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For parents of children with visual impairments

Raising a Child Who is Blind and...

Looking Ahead

I’m beginning to realize how easy it is to get stuck in the present. Our family goes about each day in our own typical fashion. I expect things from Eddie that I know he can do, but I forget about the things I want him to learn. Some behaviors, and poorly learned habits, are overlooked because it has become what others have called our “new normal.”

I don’t even realize some of the areas he needs greater skills, because I easily accept him for who he is today. I forget to look ahead to tomorrow and where I want him to be. When I forget about tomorrow, I simply let Eddie “off the hook” and don’t show him that my expectations for him are high.

At school, during the IEP meetings, we talk about goals for hours. We disagree and agree with teachers, we discuss our own goals, and we work as a team to come up with the best measures of our kids’ progress. Unfortunately, at home, we are the only ones to set goals. We don’t get to collaborate with educators, and we have to set them based on what we can achieve and fit into our daily lives.

When Eddie was an infant, I often made lists of goals and called it “Eddie Boot Camp.” I envisioned I’d spend weeks in the summer teaching him countless self-help skills and that he’d have so much of my attention he’d get sick of me. I set hundreds of goals…became overwhelmed by the list…and then quickly forgot about it due to mental overload.

When Eddie got a little older, I realized that I had to pick one main goal and stick with it until he successfully achieved it. For example, eating with utensils was one goal; which we worked on for months. Eddie now can do it, but we still have to reinforce it daily. However, by seeing his growth, I was comfortable moving onto the next area.

This summer, I want to push Eddie to work on a lot of his pre-braille goals. I feel if I put in a lot of work, it will pay off greatly in the fall. I had many different activities and goals in mind (and a lot of work for me), and a very smart friend gave me some great advice. She reminded me that I can work on goals, but that I can find fun ways to do it for Eddie and me. She also made me feel like I didn’t have to kill myself, and that I didn’t have to feel guilty if we also just spent time enjoying summer.

I simply need to remind myself to look ahead and not get used to where Eddie is today. If I expect Eddie to remain his 8-year-old self, I’m not giving him enough credit. I hope to think about his “tomorrow” every day, and continually set goals (even small ones) to keep him learning and growing.

I’m wondering if any of you ever find yourselves forgetting about the future. Or refusing to think about it? Do you have any goals (immediate or long-term) that you focus on? If so, please share! I’d love to know that other parents do a better job of looking ahead than I do…and your ideas will likely inspire me, and possibly others.

To Include Or Not To Include

The end of the school year is filled with many different opportunities to step outside of the educational box and simply have fun. Field trips are scheduled, performances are planned, and parties are enacted. For every opportunity in Eddie's life, we have to consider whether he should be included, or not included.

In May, Eddie's 1st grade classmates were going on a field trip to a farm. When we heard about it, we knew Eddie had to go. What could be better than touching farm animals and smelling the fresh (?) outdoors and discovering all that farms have to offer? Eddie walks to school, so even the prospect of riding a school bus sounded like something Eddie would like. We wanted him there, and his school made it happen.

The next function wasn't so easy. Eddie's general education class was performing a series of plays for the end of the year. There were scripts to be memorized and songs to be sung. The kids had been practicing for weeks and Eddie had begun singing songs from their practice sessions. The problem was, we didn't recognize the songs, and didn't know any event was being planned.

To our disappointment, by the time we realized Eddie would not be involved, it was too late. The question was asked..."to include or not to include" but was never posed to us. For reasons outside of my understanding, the decision had been made to not include. I know that Eddie is not always a "picnic" and that he likely didn't care that he was not included...but, I cared.

Finally, as a teacher of the visually impaired, I heard about an event being planned in our adjacent city for students with visual impairments. Immediately, I thought, INCLUDE!!! I brought Eddie, another student, and their aides on an outing that included a carousel, a water fountain, and pizza for lunch (Eddie's favorite part I'm guessing).

Eddie wasn't sure about the carousel, but with encouragement and after a temporary meltdown while waiting in line, he had a blast. I loaded him onto the horse as he was saying, "no, no, no," and when the ride was done he said, "more, please...Go!" Success!

The point is, when asked to include or not to include, I don't even always know the best answer. However, I always want to try because by not including him we are simply leaving him out. We are saying that he "can't" without even giving him a chance.

We're not only telling Eddie he "can't" but we are telling all his peers the same thing. The more Eddie is left out, the less they will consider him a classmate. Before we know it, he'll just be that blind kid down the hall that spends all day working alone. He'll be considered a fixture, but nobody will "own" him.

Imagine living without anyone wanting to take ownership of you. To be nobody's parent, sibling, spouse, or friend? To have nobody say, "She's my ____." How sad. I won't let that happen to Eddie. He is my son. He is my daughters’ brother. He is my mother's grandson. He is YOUR student. He is YOUR classmate. He could be YOUR friend.

Signs of Growth

In the world of parenting Eddie, nothing ever seems normal. A family outing, a parent-teacher conference, a visit with relatives, and even watching T.V. have a twist to accommodate my son. When Eddie is involved or included, nothing would be considered “normal” by anyone peering into our lives. I’m not saying bad…just not…typical.

This is even more obvious when you track Eddie on a daily basis as we do. We know that he measures the things in his life on a different scale. We know that his joys are irregular and his upsets are unpredictable. We know that he isn’t comparable to his peers in most ways. Because we are so aware of all the things that make him different, it completely throws me off guard when something happens regarding Eddie that is typical.

When Eddie was 5, I found one morning that he was missing a tooth. This completely blew me away. Here was this child that was developmentally a toddler, and he had lost a tooth. My first question was, “Where is it?” Obviously, it had gone the way of his breakfast…down the hatch. Luckily, baby teeth are very small.

Suddenly, I was forced to realize that even though he wasn’t acting like a 5-year-old, his body was still 5 years old. A year or so later, when the two front teeth were gone, I was again reminded of Eddie’s physical age. Aside from being surprised by this normalcy, it also struck me with fear that time would not slow for Eddie to catch up. Not only would his body not wait for him to act 5 or 6…but school would not wait either.

Again this weekend, I was reminded that Eddie is moving through time, and we cannot slow him down. We finally had to move him from a twin bed to a queen. Not because he couldn’t fit in a twin, but because he wanted room to move (and we needed room to lay down with him when the nights got long). Seeing him upgraded to a larger bed, had me picturing him filling that bed, and realizing those days would be here too fast.

Even though Eddie hasn’t hit a “developmental” milestone to date, he is still hitting milestones. He is losing teeth on time. He is starting school on time. He is fitting into bigger clothes every year. I’m sure one day I’ll turn around and he’ll need acne wash and a regular shave. Wow…that is frightening.

Because his growth cannot be slowed, and because he is typical in so few ways, I’ll enjoy looking for missing teeth. However, even more so, I’ll celebrate his unique signs of growth.

Just like the pencil marks on the wall for other children, we have a pile of canes; from the tiniest, adorable, white cane to his current one with blue on the end. They are all covered in marks where he found curbs, or possibly his sisters, and bent in ways that show lots of use. Watching that pile grow as my son grows is just about the coolest sign of growth I think I’ve ever seen.

That Wicked Kitchen

Due to multiple medications, and lack of physical activity due to an orthopedic impairment AND laziness…our son, Eddie, is always at risk for obesity. He puts on pounds fairly quickly, and doesn’t lose them quite so fast. Even though he has not yet become overweight, the chances for him are much greater than for other kids.

The main thing that really increases his chances of excessive weight-gain is that he LOVES to eat. When given his “choice board,” he would pick “snack” all day if we didn’t intercede. We have to quickly hide that choice after every meal or snack so he doesn’t immediately request it again. The great thing is that this is a situation we can control, and we do. We have yet to take control in other areas that need attention.

We have pushed Eddie to be independent in whatever ways he is physically capable. As he gets older and stronger, and since he’s walking independently, he is required to (for example) get the milk out of the fridge when he wants some. Watching him slowly becoming self-sufficient is amazing, but now he can open the fridge; which means…potential grazing.

This kid is the ultimate grazer. When unsupervised anywhere near the kitchen, he finds his way in, and inhales everything on the counter. He’s been known to eat almost a whole loaf of bread. He has polished off a bag of candy. He’s finished a bag of chips. He will also clear off any plates left on the counter. (Having two sisters…he can find lots of “scraps” remaining after any meal.)

Not only will Eddie eat anything he finds, but drinks are on his menu as well. Any unfinished beverages are gulped down with minimal hesitation. His biggest risk is drinking a gallon of juice, or Kool-Aid, or random soda. Another potential risk, is that he’ll locate one of the “adult” beverages. It hasn't happened yet, but we have to be very careful about where we leave our cups.

So we find ourselves at a point where we are likely going to start stashing away the food and being more diligent. If we catch him, and tell him “no,” he will quickly exit the kitchen. The problem is that we don’t always catch him. With more mobility and skills, he is simply going to have more access. I don’t see fridge-locking in our future, but I haven’t taken it off the table either.

Aside from getting into ALL the food, we also worry about other things in the kitchen. For example, we have a gas stovetop. When Eddie comes across the knobs, he likes to turn the gas on, and then wander away. Due to this “charming” behavior, we now pull all the knobs and keep them in a drawer next to the stovetop.

There is always a desire to push for more independence; in this case, it’s in the kitchen. However, how do we keep him safe without going over-board? It is a constant balancing act that I perform every day. I don’t want to limit him, but I also fear for his health and safety.

Keeping the kitchen in mind, how do you promote self-sufficiency and also safety? Do you have any kitchen safety tips that still allow your kids with visual impairments to access the kitchen? I’m hoping my gas-knobs tip may be helpful to one of you…and maybe you’ll have some great tips for me (and others).

Uh-oh…I literally hear Eddie clearing countertops. Time to go save the bread!

Mother-Son Night

Our kids’ elementary school has a bi-annual event where the kids get to bring one of their parents. Last year there was mother-daughter night; followed by father-son night. (Eddie and his dad missed it last year due to illness.) This year, there was father-daughter night in the fall, and mother-son night this spring. I of course knew the event was coming, and debated whether or not to attend.

All of these events include games, an opportunity for pictures, and finally…cake and punch. I knew that of all the choices, Eddie would only really enjoy the cake. This is what had me wondering if it was worth attending. It came down to one question…if Eddie and I went, would it be for me or for Eddie? If I’m going to be honest, it would be mostly for me.

After coming to that conclusion, I still wanted to go. I wanted to participate with my friends and their sons. I wanted to have a night out with Eddie. I wanted to bring Eddie so the other kids could see that he has a mother, too…and is a part of the school. Above all else, he REALLY loves cake.

The night of the event, I worried about how we would even get there. The school is one block from our house, but if we walked, he might think he was headed to actual "School"…at 6:30 at night. Likely, he’d think, “I already did this today.” “I’m too tired for more school!” “What is going on?!?” So, to avoid the inner monologue that would likely end in complete meltdown…we drove.

I grabbed Eddie, he grabbed his cane, and we climbed into the van for a one-block drive to school. Honestly, this worked great. He was happy we were going out…just the two of us. He walked into school totally content. We also beat the crowd by arriving ten minutes early. We went right in and got our picture taken, which in itself is always an adventure.

I’m always so worried about Eddie, that I can’t even begin to worry about my hair, or my smile, or even if I’m drooling. Luckily, the cameraman reminded me (on the fourth take) to at least look at the camera. The pictures came back today and they aren’t too bad; aside from the fact that my teeth are a little clinched because I was trying to say “Swing batter…batter…batter” while smiling and not moving my lips. (This was the key to Eddie smiling on this particular day.)

So, after pictures, I moved over to a table and looked around for cake. That is when I remembered that cake wasn’t going to be served until towards the end of the event. Hmmm…I knew that wasn’t going to fly. I stealthily snuck into the kitchen and asked if Eddie could please have his cake and punch now…and I mean right now. Yes, I played the “Eddie Card,” and nobody cared.

You know what? I decided that if he was going to get dressed up and have his picture taken for me, I was certainly going to get him his cake. Our window was very limited, and he was never going to make it another thirty minutes until the cake was served. Due to this minor advocacy for Eddie, we had a mini-night out without one outburst…until the end.

We went to leave the cafeteria, and Eddie took an abrupt right and headed towards his classroom. When he reached the door, he tried to open it, but of course it was locked. That was not a happy turn of events for him. Typically after leaving the cafeteria, he gets some free time, which I'm sure is what he was after.

Going at all was a risk, but I’m glad we took it. Why shouldn’t we have attended? Eddie deserved mother-son night like all the other sons…and I deserved it like all the other mothers. It’s easy to forget, but above all else, I am simply a mother.

Simply Sad

Because I recently stated to friends that Facebook is really only snapshots of the best days of our lives, I feel that I need to make this blog a little more realistic than that. I love that Facebook gives us a platform to share special moments with our family, or to share a favorite recipe or book. However, have you ever noticed that when someone posts something sad, or even depressing, it can simply be awkward? Like reading a diary? Well, get ready for feeling a little bit awkward.

I need to admit that I’m writing today on a grand total of two hours of sleep. I guess that is reason enough to feel sad. That lack of sleep was due to my son, Eddie, being up all night moaning and crying with no explanation. Again, that is reason enough to feel sad. He also continues to tantrum today with no rhyme or reason. Again…pretty good reason to feel sad.

When I’m exhausted, and down-hearted, I go to this very odd dismal place that is sort of “out-of-body” for me. It isn’t my general demeanor, but I can’t help but find myself there from time-to-time. The chances are good that I’ll wake up tomorrow as optimistic as ever, but right now I simply can’t feel that way. I feel like there are endless mountains to climb, and a million problems to solve in regards to Eddie, and I don’t even know which way to look.

I think of the growing list of questions, and the even greater list of solutions not tried. Obviously, we can’t try every educational program, or every medical solution, or even every non-traditional approach to his medical and emotional needs. Knowing that in itself is simply sad. How do we know what to try? How do we know what might work? How do we know if we’ve missed the obvious? How do we know?

I’m not going to continue this depressing monologue, because tomorrow morning, with some god-willing much-needed sleep, I’ll have a change of heart. But, for now I’m simply sad, and I feel I can have those days. We all can. I’ll pick myself up tonight by making dinner for the family, by getting extra hugs from the kids, and eventually will sit down with a good book (or a movie with my hubby) and a glass of wine. I will do those things because that’s how I cope.

So now a question for you…how do you cope? When the day is longer than normal, or the tears come faster, or the reality of raising a special needs child seems thicker…how do you cope? We all need strategies and I’d love for you to share yours.

Already my spirits are lifting a bit because I can hear Eddie in the next room splashing in the bath and laughing. He is also singing along to the sweetest song. (I have no idea what it is because it is on a Pandora playlist.) Anyway, that is how Eddie copes. He, too, has had a bad day. A long bath and Pandora are how he copes. I may have to try that next.

Recreation?

Warmer weather has arrived in full force around here. Inevitably summer is on the way. This means no school for the kids and lots of free time around the house. Hours...and hours...and hours...of unallocated down time. Does that freak any other parents out, or just me?

My two daughters have no trouble passing away the time riding bikes, playing video games, occupying the swing set, playing in the sprinkler, etc., etc. However, for Eddie, my child who is blind, it can be really difficult keeping him happy all summer long. During school, his day is regimented into perfectly sequenced activities that keep him busy, learning, and entertained. That just doesn't happen in the summer.

I understand the importance of routines, especially because he's autistic as well as being blind. Routines can be the only thing keeping him together some days. The problem is that I don't like routines in the summer. I like to get up and see where the day takes me. I like to grab the kids and find a lake, or go on a bike ride, or even watch a movie with the shades drawn. (I don't like to be too hot...) The complete lack of a routine is our routine.

I think that Eddie does get the hang of it, but to keep him content with no literal schedule, I have to keep him busy. This weekend was the first attempt at warm weather entertainment. He sat on the swing set until the shade shifted from his favorite spot. He sat in the grass and listened to his favorite music. We went on a short bike ride; Eddie has a miniature chariot he gets to ride in. We even watched his sister's play some baseball; he's becoming a professional spectator.

So, in a few short days, we had pretty much run through our top summer activities. Aside from swimming and camping, we've covered all our potential options. Eddie does have an orthopedic impairment; so long walks or hikes are out of the question. He also doesn't regulate his body temperature well; so too much sun puts him over the edge. Can't you tell already? I'm full of excuses for our minimal recreation activities…

This is where I need some help. I want to have not only a handful of summer fun ideas, but a whole list. What are you doing with your children with visual impairments when the weather is good? What are your favorite recreation activities? How do your kids like to spend their summer days? Eddie and I are both dying to know.

Whether you share here by posting a comment, or by posting on Facebook, please just share your ideas. I say there isn’t anything too grand or too small to offer. If I’m not the only one nervous about the upcoming months of summer (and I’m guessing I’m not), your ideas could be just what someone (including me) needs to hear.

Shifting Focus

This week, I was able to shift the “blind” focus away from Eddie a little bit and move it to his older sister, Molly. Typically, when it comes to Eddie’s disabilities and significant needs, his sister isn’t too involved. She is aware of his needs to an extent, but has her own life and her own hierarchy of needs that don’t have much to do with Eddie, which I think is healthy and appropriate. However, this week she got immersed into his world, via indirect routes.

April 25th was “Bring Your Child to Work Day,” and I opted to bring Molly along with me. As I’ve mentioned, I’m a teacher of the visually impaired. I work as an itinerant, meaning I travel between a variety of schools and districts on any given day. I thought it would be great for Molly to tag along to see what it is I do all day, but also to see other kids that have visual impairments.

On that particular day, Molly was able to meet four of my students. She helped plan lessons, and participated in every activity. She was amazing. She was attentive to these kids in ways I’ve never seen at home. She enjoyed every student, regardless of their vision loss or whatever additional disabilities they may have. The surprising thing was, that it translated to her life in ways much greater than I expected.

Since that day, she is more interested in the braille in our house; she’s even trying to learn braille. She pays more attention to her interactions with her brother. She’s showing him greater affection and consideration. It’s like she realized he is just like all the other students she met on her day with me, and he isn’t as intimidating as she thought.

We had so much fun spending the day together, and it really was mostly about her and including her in my life. However, it also was a sneaky way for her to learn more about kids with special needs. To add on to that great day, I added another outing into her week that seems to have paid off. Yet another way to help her understand that Eddie is unique, but that he also makes her unique.

There was a day camp near us specifically for children who had a sibling with a disability. Molly has a buddy that also fits that description, so I carted the two of them off for the day. They got to interact with each other, and kids that have families like ours. They made crafts, and talked about their siblings. Even though Molly was there because of Eddie, the day was about her, which was as it should be. The girls had so much fun and hope to go again next year. I believe they are making connections that will support them now and in the future.

I do think it is important that Molly can understand her brother as much as anyone can. I think she should be able to tell others about him, and be confident in how to interact with him. I think she needs to have an understanding that because of him, our family will be different, but that isn’t a bad thing. Just because there are days when he is all-consuming for me, every day of her life shouldn’t be consumed by Eddie.

Yes, she has a brother with special needs, but that isn’t the only thing that makes her unique. She is an individual herself and the most unique 9-year-old in the world as far as I’m concerned. We always say we are blessed to have Eddie, but I believe with equal resolve that we are just as blessed to have Molly. I only hope I can remember to tell her that every day.

Eddie Turns Eight

Another year has passed since I wrote the captivating piece, "Mr. Eddie Turns Seven." Sarcasm aside, it is amazing how fast the time goes. I'm sure we all feel ourselves racing against the clock in our personal lives, but that feeling grows ten-fold when you have a child with a disability.

As another year passes, we find ourselves celebrating the successes, of course, but also terrified at how big the list has gotten of the goals yet to be met. Another year forward means another year lost towards "catching up" with peers. When he was a baby and I was told that Eddie has Optic Nerve Hypoplasia, I was also told that Eddie would likely "catch up" by the time he was seven. This is a very optimistic opinion that I clung to, and is true for some children with his diagnosis, however hasn't been true for Eddie.

Within the last few years, it has sunk in that Eddie will not be a typically developing child. He cannot be compared to the "norm" in his age group, and likely will never be compared to the "norm" as an adult. Understanding that, and truly accepting that, has given me freedom to embrace who he is and will likely be.

Yes, Eddie is eight, and he isn't playing little league. He isn't riding bikes. He isn't reading. However, that isn't bothering me because I'm no longer waiting for him to "catch up." I'm simply very excited that he IS using his long white cane. He IS communicating. He IS looking for braille in every book he can find. He IS absolutely adorable. Like I've said before, I'm choosing to focus on the things that he IS and accepting the things that he isn't.

I realize that every day we can't be so optimistic, and there will be moments when I long for a future he was never meant to have, but I don't wallow there. Instead, I continue to push him to get more "IS" in his life. I know that I have to accept 8-year-old Eddie for who he is to support him in whatever goals he can accomplish, and to provide him with the absolutely best resources I can find.

This year, I was celebrating his eighth birthday without him. I was attending the AFB Leadership Conference in Chicago, which in the end is because of him and for him. At this conference, I learned a multitude of things that will help me as a mom and also as a teacher of the visually impaired. I'm taking back knowledge that simply can't be achieved without the face-time provided by true leaders at this conference.

Even though I missed having face-time with Eddie at his birthday breakfast, he was taken care of by his dad and sisters. They decorated for a king and I'm sure the girls helped open every last one of his presents. I talked to Eddie on the phone and sang him "Happy Birthday." He replied with, "Yes! Birthday today! Yay!" Then I got to hear his unique and unmatched laughter that simply makes me happy. "Yes!" Eddie is 8, and I'm as grateful for him now as I was at the day of his birth.

Reading the Signs

Recently I was visiting Eddie at his school, and he was having an abnormally rough morning. I noticed when he awoke that day he wasn’t thinking at his typical speed. When asking him simple questions he usually responded to quickly, he couldn’t come up with an answer. You could see the wheels spinning, but his thought train was not moving forward. This foretold of a potentially bad day at school.

So, when I showed up to work with his teachers, and to discuss his braille progress, I thought I probably wouldn’t get much work out of him. We started by heading off to his regular education classroom, which he does each morning. While going down the hall he tried to enter his classroom from last year. He was adamant about revisiting kindergarten, and threw a tantrum when prompted to continue on. Again, this demonstrated that things just weren’t “clicking.”

We decided to let him choose between going to the 1st grade class, or the braille room. He immediately said, “braille room,” and we turned around. Most days, if he is throwing random tantrums, we stick to the routine because we don’t want him to think he can call the shots by getting upset. But today, he had demonstrated multiple times that he was struggling, and we simply had to take the cues from him.

It is so easy to get caught up in what goals must be accomplished and what schedule needs to be followed, that we forget our kids can simply have bad days…just like us. By realizing right away that Eddie was having a tough time, we were able to quickly adjust his routine and activities in a way that would work for us all. We simply had to meet him at his current level, or we’d all be frustrated.

When we got back to the braille room, we gave him two choices right away…book or calendar. He chose book…and we gave him two more choices…”Corduroy” or “Gruffalo,” He picked “Gruffalo.” He listened to the whole story, reaching sometimes for the braille, without an incident. We weren’t pushing him, but he was being educated (even if he didn’t know it).

Next, I wanted to show his teacher the SMART brailler I discussed in an earlier blog. It has voice output, and I thought she would love to see it. Eddie immediately became upset when I asked if he wanted to “write” and I pulled out the brailler. So, I knew that if he was going to have anything to do with it, I’d have to spice things up. With a few simple adjustments, this was easy to do.

First, I made sure the voice output was set to “Graham,” the British male option. Eddie and I both love that. Who doesn’t love a British accent? Next, I gave him choices about what songs to braille. While I was typing, he put his hands on mine and helped push down the keys. I sang the words along with “Graham” as we went. When finished, we pulled out the paper, and sang the song together while he felt the braille. Simply put, we were both having fun.

Eddie’s bad days come at the drop of a hat. There is no rhyme or reason that we have discovered, so we have learned to roll with it. We absolutely have to read his signs and take our cues from him. Some days he will accomplish a lot, and on other days we simply have to make learning more “fun” than functional. Besides, regardless of his mood, he is always capable of learning. Sometimes it just takes the magic of something like “Graham” to make learning happen.

Flashback

I was recently asked by another mom raising a child with a visual impairment about when we were first given our son’s diagnosis. She was interested in what it was like for us in the beginning. Because this is Eddie’s birthday month, and I’m feeling nostalgic, I feel like a short summary is in order. As with all parents raising special needs kids, our story is unique, but I’m sure will sound oddly familiar…

When Eddie was born, he was over a week past his due-date, and weighed in at almost ten pounds. At first, things seemed mostly normal, but within hours he developed some medical complications that required us to be transferred by ambulance to the nearest NICU (neonatal intensive care unit). We stayed there for almost three weeks. This original medical struggle had to do with his liver, and its lack of function.

Every possible test that could be run on Eddie’s liver was completed. He was required to donate a few drops of blood at least twice a day for labs. With every test, we were given no answer. On the day of his scheduled liver biopsy, Eddie’s liver just simply “kicked-in.” A reason for his liver delay was never given, or explained. That same day, we were released to go home.

We spent the next few months caring for Eddie like a typical newborn. We saw no reason to be concerned, and thought the worst behind us. Even though I learned later that a few friends questioned his vision during that time, it didn’t worry us once. Even though we had an 18-month-old as well, we never noticed a problem. Never knowing anyone who was blind, I really couldn’t comprehend the idea of a baby being without sight. It wasn’t anywhere on my radar.

At Eddie’s four-month well baby appointment, his doctor noticed a problem with his eyes. He wanted us to see an ophthalmologist the very next day. His urgency worried me, but he quickly explained that vision delays can be caused for a number of reasons and that I shouldn’t be concerned. I left there really not feeling too alarmed. The doctor didn’t look “freaked out,” so I didn’t feel it.

The next day, Eddie visited his very first ophthalmologist. After dilating Eddie’s eyes, it was immediately clear that his optic nerves were barely there. The doctor told me he had Optic Nerve Hypoplasia in pure medical jargon, which I didn’t comprehend. Then, he looked me in the eyes and said, “Your child is blind. Do you understand that your child will be severely disabled?” Um…what?!? I guarantee that I didn’t understand anything, and thank you for putting it so nicely.

When asking for answers, and what to do next, I was given a phone number. That phone number was for adult rehabilitation services for the blind. Luckily, they weren’t as misinformed as the doctor, and they quickly connected me to our state school for the blind. After calling them, my contact information was given to the best teacher of the visually impaired I have ever met. She came to meet me within days, and our journey began.

After leaving the eye doctor, I remember heading straight home. My husband came home from work, so that we could discuss what I had learned, and what this might mean for Eddie. I remember crying very little, and Eddie’s dad didn’t cry at all. I’m not sure if that was due to our normally optimistic traits, or if it was due to sheer ignorance about having a child with any kind of special needs. Really, I don’t think we had a grasp on what this meant for Eddie’s future, or our own. Even now, after almost eight years, I’m still struggling to grasp it all.

Later, I remember talking to family and friends, and feeling almost outside of myself. Through tears, I told my closest friend that I was worried he would never see my face…never make eye contact. My mother-in-law tried to comfort me by stating that she’d be here for us. Instead of graciously accepting, I barked that in the end we would be the ones primarily responsible for Eddie, and from that I felt there would be no relief. My immediate shock of his diagnosis was met with mood swings, sadness, and more than anything else…questions.

What was his diagnosis? What caused it? Were there other complications expected? What other specialists did we need to see? Would he go to a school for the blind someday? How does somebody learn braille? Would he need a cane, or a guide dog? Would he ever have a job? Would he ever be married? How do we take care of him? What do we do…what do we do…and what do we do?

I’m still asking questions. I still find myself regressing to mood swings, and even sadness at times. However, I’m also finding some answers. With each answer, I find joy, accomplishment, and happiness for Eddie…and for his family. This child has completely changed my life. Because of him I have changed my career, reprioritized my life, and have been given an education only he could provide.

So, looking back eight years ago, and to the day I heard that my child was blind, I can’t say that I feel sad. Instead, I feel really blessed…truly. Finding that inner peace may be the best thing that could have ever happened for me, or for Eddie. I know it can be hard to relinquish, but I realize that continuing to question the past simply won’t help anyone in our family, Eddie included. We need to focus on how we can help him today, and tomorrow, and next year, and in ten years. Those are the days we have to look forward to, and that we need to embrace.

Lessons Learned at the Beach

This past week was Spring Break for our family. We headed out on our 2nd annual beach camping trip. Like last year, we stayed in a yurt to secure dry, warm conditions in case it rained. Since we were staying at the ocean in April, rain was inevitable, and we wanted to be prepared. Here are a few lessons I learned during our trip:

1. A wide-open, sandy beach is perfect for traveling blind. Eddie was able to use his cane with reckless abandon and wasn’t at risk of hitting anyone or colliding with large obstacles. We had a chair for him to rest, but he would spontaneously rise up and walk in large circles singing and dancing at whim. We could be yards away and knew he was perfectly safe to explore and enjoy the beach.

2. When all goes south, find the nearest pizza and/ or ice cream…quickly. When Eddie lost patience with us and our tourist activities, he got upset very fast. He spent a few hours of quality time sitting in our van with his dad or myself listening to his favorite CD when we simply couldn’t keep him calm. The only way to get him back involved with the family was to bribe him with his favorite foods. Luckily, tourist towns are always stocked with pizza and ice cream.

3. The ocean offers something for all the senses. When I go to the ocean, I rely on my vision to watch the waves, take in the panoramic views, and to comb the beach for treasures. When Eddie goes to the ocean, he can taste the salt, hear the waves, and feel all the beachcombing treasures. He also can smell the sea-soaked seashells stinking up the back of our mini-van…he couldn’t stop smelling them even if he wanted to…none of us could.

4. While sleeping as a family together in the yurt, any kind of rest is a gift not to be taken lightly. We stayed at our campsite for three nights. The first two, everyone slept all night long, and didn’t rouse until 6:30, which is unheard of for our kids. The final night, my husband and I tested fate by staying up until 11:30 at the campfire enjoying each other’s company. We went to bed, and a half-hour later, Eddie was awake. Not just for a few minutes, but spontaneously crying every 15-20 minutes until dawn broke. Thank goodness we had two good nights before that, or we would have been beyond help the following day.

5. When travelling with special needs kids, always make a list before packing. We walked out of our house without two very important things. The first was Eddie’s medical “binder” full of important information in the event of an emergency. Luckily, we didn’t need it. The second was the communication system we have in place for him made out of tactile symbols. That forgotten item I quickly referred to as an “epic” parental failure.

Imagine leaving for a trip without your voice. That is exactly what we did to Eddie. This is the downfall of a communication system outside himself, but for now, it is the best he has…and we forgot it. As soon as we realized our error, Eddie leaned forward in his car-seat and said, “Make a choice.” Yep, his key phrase for his communication board. I wanted to cry…which was quickly followed by actual crying coming from my son.

When restating this “failure” to my sister, she quickly corrected me and said, “lesson.” By that simple revelation, I felt better. I’m not perfect; none of us can be as parents. We learn from our greatest achievements…and our self-perceived failures. So, for the sake of keeping a positive outlook on my mothering skills, I’ll chalk it up to another lesson learned at the beach.

More on Choices

A few posts back, I talked about choices and how we made Eddie a tactile “choice board.” For children that have communication delays, we have to give them some control over their lives. Imagine if you were starving, or were thirsty, but you didn’t have the words to tell anybody, and you didn’t know how to take care of it by yourself. Personally, I would quickly find myself demonstrating “problem” behaviors. Therefore, it is no wonder that Eddie has some behavior concerns.

By giving him choices, he is able to make some decisions about what he would like to do in the time he wants to do it. I don’t have to keep presenting him with ten ideas and hope I hit on exactly what he needs and/ or wants. Even though the choice board is great for that, I also try to give him choices throughout most every part of his day.

When he gets up in the morning, he immediately says, "I want gum please." This works great for bribery. I simply state, “IF you go to the bathroom AND take your medicine, THEN you can have some gum.” This typically works like a charm. The tantrums can show up in the time after this because he has to wait an hour before eating breakfast due to his medicine, and he is usually HUNGRY!

We’ve made this process a little easier by giving him choices about his hour of starvation free-time. I ask questions like, “Do you want to go to your room or upstairs?” “Do you want your light on or off?” “Do you want the hammer toy or the music toy?” “Do you want music on or off?” He can usually answer us verbally because we just spoke both choices. Even though I am only offering him two choices at any given time, I’m letting him make choices, which helps him feel in control.

Recently, Eddie has added a new twist to my simple choice process. It appears he has fully grasped what the word “or” means and has infused it into his daily vocabulary with great ease. I might say, “Eddie do you want milk or water?” and Eddie will immediately say, “Or...” I may even say, “Eddie do you want music or a book?” and I’ll hear, “Or…”

The first time I heard him say, “or…” I thought I misheard him. After hearing it a few more times, I realized my choices weren’t good enough. Well, I know that I definitely want him to make his own choices. I’m blown away by how quickly he understood that a simple word like “or” could widen his options. Again, I feel I’ve underestimated him somehow, and only hope that I can fulfill every “or” in a way that works for us both.

Special Needs = Special Products

When you have a child with special needs, you can’t simply walk into Toys R Us and pick up the most popular toy and know that your child will love it. This is not a news-flash for parents of special needs kiddos. In that same regard, teachers can’t pick up a catalog and select a curriculum tailor made for our children. Even teaching tools especially for kids with visual impairments cannot be counted on all the time. Especially if your child, like mine, has additional disabilities.

This weekend, while attending a regional AERBVI (Association for Education and Rehabilitation of the Blind and Visually Impaired) conference, I had the opportunity to check out many of the latest devices and methods for children with visual impairments. I sat in many sessions that shared great information…but not necessarily tailored for a child like mine. Even though some were very helpful, not one felt like a perfect “fit” for him.

While walking through the vendor exhibits, I saw some fascinating tools. However, as I travelled through the booths, I felt many weren’t necessarily going to do anything for my child who is blind AND autistic. He simply doesn’t learn like other sighted children…or like a typical blind child. Due to his lack of vision, low vision tools just aren’t applicable. Just when I felt the exhibit hall may not offer anything for him, I came across a new device known as the Perkins Smart Brailler.

When it comes to learning braille, I think he needs something that isn’t too technologically advanced, but also gives him greater feedback than the traditional Perkins Brailler. (A brailler is a tool used to write braille.) I had heard of the “smart” brailler, but had yet to really get a chance to use one yet. The great thing is that they have text-to-speech, which gives immediate feedback. If he were to braille an “a”…the brailler says “a.” For a child that may need a greater incentive to write (like Eddie), this tool may be just the thing.

When it comes to Eddie’s education, I often feel like I’m piecing it together one lesson at a time. I have a hard time seeing the “big” picture or finding the perfect teaching tools to use with him. I often feel that the field of blindness simply doesn’t offer as many answers for him as it does for children who are blind, yet more typically developing. Yes, there are some great books and resources, but they are not as numerous as I would hope.

However, after my experience with the “smart” brailler this weekend, I feel a little excited about opportunities for children with visual impairments AND some other diagnosis. It appears I’m not the only one thinking about those kids. Obviously, the developers of the Perkins Smart Brailler are, but also are many teachers of visually impaired children.

I listened in and participated in multiple discussions this weekend revolving around children with cortical visual impairment (CVI) and children with optic nerve hypoplasia (ONH). Those two eye conditions are on the rise, and I’m happy to report that educators are concerned, and looking to address their needs. I can’t wait to read a future literacy program geared for my son. I have every reason to believe that someday I will.

One for You, One for Me

If you’ve read my previous postings, you know that my son Eddie is blind due to Optic Nerve Hypoplasia, autistic, and has mobility issues. (Just FYI: he's also quite a character.) What that means for us in the scope of day-to-day living is that every task for him takes at least three times as long to complete. In reality, it can often take ten times as long. So, even though we talk about pushing him towards independence, it simply doesn’t happen all the time.

Throughout the day, the little things we take for granted have to be treated like a mini-lesson. When we ask Eddie to even wash his hands, we have to remind him what each step is in that task, and then supervise and prompt as needed. This process that takes a minute for most, takes us five. Take this one thing that happens multiple times throughout the day, and you can easily see the minutes in a day being used up very quickly.

On top of simply the time it takes, one must also consider the patience. Not just the patience it takes for the adults in his life, but also the patience required of Eddie. He’s thinking, “I want to listen to music. I want to dance. I want to go sit in my bean-bag chair…and you’re making me think about washing my hands!!!”

In the meantime, I’m thinking, “I need to pay that bill. I need to finish that report for work. I need to check on your sister’s homework…and instead we’re teaching the hand-washing lesson again!!!” You can see how two people completing a normally simple task can get easily frustrated.

Even though I would like to have the time and patience to help Eddie complete every task as independently as possible, I’m also realistic. I have limits, and so does Eddie. I know that perseverance and routine will help him learn faster. However, we both need breaks for our own sanity. In the spirit of sanity, it has come down to “One for You, One for Me.”

I may require Eddie to participate in a hand-washing “mini-lesson” one time…and the next time, I wash his hands for him. Sometimes, on the weekend when there is more time, I may push him to do it himself more than normal…and when days are crammed with one-hundred other things…I may wash his hands for him more than usual. It is basically a give and take relationship that keeps us both happy, but still promotes some learning.

As an educator, I want to teach him as much as possible. However, as a wise man recently told me, at home he is on a 24-hour I.E.P. There is no “magic bus” to take him home so I can get some rest. At home we both have to do some work…and we both have to get some rest. Therefore, I will continue to meet daily skills with the “One for You, One for Me” methodology. While I admit I am enabling him some, I’m also giving him a break, which we sometimes both need.

Special Treatment

The last time I wrote, I explained a recent situation where we chose to ask for special treatment due to Eddie’s unique special needs. The comments I received were varied and brought up an array of new questions that I was asking myself. Should we do everything we can to give our children a boost in life? Should we ask for special treatment when we also ask for equality?

As a teacher of the visually impaired, I want to expect Eddie to follow the same rules as everybody else. I want him to know that he isn’t the only child in the world, and that he also has to be respectful of those around him. I want him to be seen as a capable kid by his peers, instead of somebody that always needs assistance.

In my teaching role, I see students and adults become overly helpful with the kids that have visual impairments, which can hinder the child’s own independence. For example, it is nice for you to bring him a Kleenex, but if he doesn’t have to get it himself, he won’t know where the Kleenex is kept. The more we assist our children with special needs, the more we can keep them from finding their own way.

However, as a parent, I sometimes weep inside at the daily struggles my son has to face. I watch him spend five minutes trying to complete a task that takes us ten seconds. I watch him throw a tantrum when asked to use a spoon because it just isn’t as easy as using his hands. When those tears start falling, it takes everything I have to not step in and tell him to take the easy way out. But, my expectations are simply too high to always make his life easy. What is hard now will someday be less difficult if I continue to push him.

That being said, I’ve come to realize something else recently. There are times in our lives when we ALL need special treatment. That can be an extra hug from someone that loves us. It can be a coffee purchased for us “just because.” It can even be an extra minute, hour, or weekend of quality time with someone to help us through hard times. Our children need that special treatment on occasion in the form of a break in a long line, a closer parking spot, or even a helping hand to get the milk open.

We all struggle at times. Our children with visual impairments can face difficult struggles every day. Even though I expect a lot, I also expect to give assistance now and then. If for no other reason, than simply because I love my son. We all need a little special treatment for our mental health and overall well-being. Receiving and accepting help from others is good for the heart and soul, and shows us that we are loved. Above all else, our children need to know that they are loved.

Playing the Disability Card

I have had a hard time asking for “special treatment” for my son, Eddie. I firmly believe that we should push our children to be treated like other children whenever possible. To get equal treatment, we need to have equal expectations. For example, if I want Eddie to be treated like everyone else in a movie, he needs to sit quietly. If he is throwing a tantrum, or crying, or making a lot of noise, I don’t expect equal treatment. Instead, I expect angry spectators. (This is why we don’t go to movies yet.)

Whenever we are out in public, I ask the same thing of Eddie as I do my other kids. He’s expected to behave, to speak when spoken to, and all the other basics of a polite society. If there is a line, he’s expected to wait in it, just like everybody else. I don’t want special treatment, because he also has to learn patience.

This weekend, I stepped off my soap box and asked others to give Eddie special treatment. I played the disability card, which I absolutely hate admitting. We had taken all the kids to an indoor water park, with lots of slides, fountains, and water. Eddie was having an absolute blast playing in the water and going down the “kiddy” slides. However, there was one slide I really wanted him to try.

This particular park had a large family ride that allowed us all to get into a giant inner tube and go down a great, big slide together. I knew Eddie would love it. I knew that we’d all enjoy a family activity. What I didn’t know was how to get Eddie up the 5+ flights of stairs. I also knew we had to try.

So, we made it up two flights before Eddie started crying, pinching, and screaming. Not only was it hard physical work, but we were stopped in line…waiting. There were people in front of us. There were people behind us. We’d be like this for at least fifteen minutes, and the claw marks were growing on my back.

My husband and I made a quick decision to ask to “cut” the line. We approached every family separately, while Eddie was in his Dad’s arms crying. I quickly said, “My son is disabled, and we’d really like him to try this ride once. Can we please cut ahead?” I had to state those same words over a dozen times. Every time, I was embarrassed, and ashamed to ask for special treatment.

By the time we reached the top, we only had one family look at us like, “Are you kidding?” Truthfully, that really hurt my feelings, because I didn’t want to ask for special treatment. I’d much rather Eddie waited patiently in that line like all the other children. But also like the other children, I wanted him to have fun.

For a blind child, I can’t think of anything greater than zipping down a swift tunnel in a giant tube with your two favorite parents by your side. Those twenty to thirty seconds of joy, followed by the world’s biggest smile, made our card-playing entirely worth it. Now, I can climb back up on my soap box, and require that he wait in line for lunch…just like everybody else.

Learning to Wait

Children with special needs, whatever those needs may be, often need additional time to process information given and requested from them. This is therefore true for many children that have visual impairments. When we tell them something as simple as “goodbye,” they may need many seconds (or longer) before they process what we’ve said and respond with an appropriate “goodbye” of their own. This additional processing time is often referred to as “wait time.”

Eddie certainly needs “wait time” consistently. When we ask him a question, we have to wait ten seconds or more before we can expect a response. This used to be much longer when he was younger. If we forget to be patient, and we re-ask the question, the “wait time” starts up all over again. It’s like the timer is reset every time we push him and don’t allow him to think at his own speed.

This is true not only for conversations, but also transitions. We need to tell him five minutes in advance that we are changing locations or activities. Then, we have to give him at least two more reminders before the move takes place. If we don’t allow him this processing time, he falls apart when we take him from a preferred activity.

Sometimes, we joke about rushing him out of bed, into clean clothes, through breakfast, and into the car without giving him anytime to process. Because we run late and we move fast, we expect him to move fast. Then, we can’t help but think he is in the car wondering what the heck just happened to him. Asking himself, “Why is my bed moving?”

I don’t know about you but “wait time” just doesn’t fit at all with my personality. I like to give the appearance of having limitless patience, but it is only for show. As I patiently address my children, including my son who is blind, I’m often reeling on the inside about what I need to do next, what they need to do next, or even wondering how I can move them even a little bit faster.

Today, as I was driving home from work, I was being tailgated by somebody in a much bigger hurry than myself. I thought, “This is what Eddie feels like.” He’s happily moving at his own speed, enjoying the scenery, and we’re annoyingly riding his bumper. I hate it when people drive right on my tail. I’m guessing Eddie hates it, too. I’m going to try to remember that the next time I feel myself pushing him to move at my speed. Instead of racing, I’ll try to slow down and enjoy the scenery, too.

Continuing Education

From the moment you hear that your child has a visual impairment, you realize there is so much to learn and so little time. Yes, a cliché, but still very true. I felt like I wanted to get my hands on every book that had anything to do with blindness. I bought quite a few on Amazon, I borrowed whatever I could from any specialist my son saw, and I checked out anything at the library remotely related to vision loss.

Once I had my stash of books, I was surrounded with knowledge and felt they held all the answers. Then, I found that along with holding answers, they could hold a lot of dust. Those books just sat on my shelves, on my end-tables, and on my desk for months on end. I looked at them every day and thought, “I should read those.” Then I thought, “Why aren’t I reading those?” Then I felt that creeping guilt sensation that every mom feels on occasion.

What I realized was that it is really easy to gather. It’s really easy to ask for advice. It’s really easy to want to know more about our children’s visual impairments and their implications. However, it is really hard to read those dry books full of great information. They are really boring.

I love to read. I’m in book clubs, and I enjoy the escape a good book brings. Books about my son’s eye condition do not offer me any escape. In fact it’s the opposite. I find that I’m living these books, and sometimes don’t want to be reminded of the difficult paths ahead, or the paths I’m already treading.

However, it can’t be ignored that there is extreme value in educating ourselves about our children. Nobody is going to force-feed us information…but, wouldn’t it be great if they did?!? I’d love to get the author of some of these vision “must reads” to present directly to me in my home. How will this information affect us? How can your book help us? Please…apply it directly to Eddie for me. Obviously, that isn’t going to happen, but I can dream can’t I?

After recognizing that these books are somewhat dull, a favorite educator of mine suggested I use one like I’m in a book club. She thought that if a close friend read it at the same time as me, it’d be easier to dive into. This was a truly inspired idea. It worked like a charm and my friend and I really enjoyed the “project.”

The first book we tackled many of you likely have. It was “Children with Visual Impairments: A Parents’ Guide” edited by M. Cay Holbrook, Ph.D. We assigned ourselves one chapter a week, and then discussed it when finished. Not only was I being educated, but I had somebody close to me to discuss it with. Every topic brought new emotions, and I didn’t have to examine those on my own.

Eddie is now seven, and we read this book together when he was probably two years old. So, it’s been awhile, and I’m not sure why it came to mind today. I just felt like it was such a great idea, and one I hope some of you would be able to duplicate. I try to remember that I’m not the only one that needs educated. If I include a family member or friend on my journey, that will also benefit me, and my son.

Make a Choice

As always, communication is a huge hurdle when it comes to our blind son, Eddie. Even though his language has improved greatly over the years, he still struggles to get his message across. When he is overly upset, he simply can’t get his brain to talk to his mouth. His frustration escalates until he is screaming, crying, and absent-mindedly hurting himself or others.

For children with vision, they often rely on their sight to help them communicate. First, as we see in toddlers, they will point to what they want. They may not be able to say “cheerios,” but they can direct you to the box and point at it. They literally control us with their little finger.

Older children with delayed speech are often encouraged to use pictures to communicate. They are shown multiple images, which they can select from to make their needs or wants known. This is truly ingenious when working with a sighted child, but completely inaccessible to children like my son.

Therefore, we have adapted the picture model to accommodate him. Instead of pictures, we use objects. When we began, we would have whole objects representing certain needs. He could select one, and hand it to us. For example, a spoon meant “hungry.” When we were handed a spoon, we knew that he wanted to eat. Simple as that. Over time, we’ve progressed to our latest system.

We have moved from whole objects to parts of objects. In our kitchen, there is a black piece of foam-board. Velcro is attached to it and holds parts of objects on thin, wood circles. For example, there is part of a straw glued to a circle meaning, “water.” There is a cap off a milk carton meaning, “milk.” There is part of a spoon meaning, “snack” or “hungry.” There is also a piece of gum glued to one for “gum.” Along with a few others, these provide the most common choices Eddie makes.

Over the past few days, we’ve been implementing his “choice board” even more so. He has been very frustrated, and unable to communicate effectively verbally. Whenever he gets angry or overly upset, we simply say, “Make a choice.” He then gets up, walks over to his “choice board,” pulls off a “choice,” and returns it to us. We are able to still push for him to communicate with us, even when the words can’t be found.

The obvious downside of such a board is that it limits his choices. We have to forecast what his needs and wants might actually be. Therefore, we are limited to a couple of his favorite things, and the basics like bathroom, eating, and drinking. Due to the limitations, he was unable to tell us his latest problem.

My husband took him into the doctor yesterday for his annual “well-child” exam. After looking him over, the doctor asked if Eddie had been overly angry and frustrated lately. Of course, his dad replied, “yes.” The doc explained that it was likely due to the raging ear infection we didn’t even know existed. Whoops. We didn’t have a tactile symbol for “ear infection.” All I can say is that we’re not perfect, but we try really hard every day…well, almost every day.

Quality? Time

If you read my last post, you are well aware that we recently had the stomach flu in our house. It travelled through most of us, which unfortunately included Eddie. He and I came down with the bug on the same day. I recovered in twenty-four hours, and Eddie just couldn’t snap back that fast. Eddie eventually got so sick, that he stopped drinking fluids of any kind, and we had to take him to the doctor, and from there to the hospital.

Eddie is generally a healthy child. He gets minor illnesses easily, but rarely has to go to the doctor other than for routine care. He has been admitted to a hospital once before, and we quickly learned that because he has other medical complications, his labs are pretty funky. Therefore, doctors are fast to admit him, and slow to let him out.

Parents of special needs kids know that your average doctor understands very little about your child’s specific medical conditions. How can they be experts in everything? After being admitted, Eddie was seen by four doctors in three days. None of them knew how to treat him, and often referred to myself and his dad for any decisions. We were asked, “How should we administer medications?” “Do you think he’s ready to go home?” “Do you want me to order any more labs?” “Do you want to add any orders to his labs?” I was beginning to wonder if I should be getting the doctor fee.

Due to the general confusion surrounding how to treat this little guy, Eddie and I were in the hospital for three days, which I do feel he needed to fully recover. The best part of being at the hospital was that I had “quality” time with my son. I got to give him lots of snuggles, order him milkshakes, and cue up the iPod with his favorite songs. I also got to spend some time with my husband. He pointed out that the nice thing about the hospital is that it’s really easy to ignore the rest of the world and we can be 100% focused on getting Eddie better.

The other “quality” part of our hospital time was that I got to brush up my mom skills. I was able to advocate for my son, and educate many people about blindness in general. My husband offered to stay during the night, and I just couldn’t leave. It wasn’t that I didn’t trust him, but I was in full “mom” mode. In a medical situation, I simply cannot give up control. I like knowing what is happening at all times, and being present to call the shots.

The hardest part about being at the hospital was the last night. Eddie decided he was recovered at midnight and simply stood up straight out of bed and said, “All done.” He didn’t understand why we had to stay. He didn’t understand where we were and why we were there so long. Tears streamed down his face as he repeatedly said “all done,” begging to go home in his own way. He didn’t want his I.V. He didn’t want any more blood drawn. He didn’t want his blood pressure checked and he didn’t want to be in that bed anymore.

My heart broke at the communication barrier that he fights. All I could do was cry with him and give him lots of hugs. In these difficult situations, I glimpse his prison created by Autism. You can see the wheels turning inside, and the struggle to understand and to be understood. I am just so proud of him. He is trying to break free. I can’t help but admire him and I’m grateful for having had three days to absorb my awesome son. However, I’m certainly hoping future “quality” time is spent outside the hospital.

Taking a Risk

A weekly event in my pre-children life was attending church. After we had our first, I continued going with her up until Eddie was born. She was only eighteen months old, and was still happy to sit in my lap with minimal complaint. After Eddie came along, my church attendance dropped greatly. Then, after we had our third, I pretty much only went to church for major holidays.

When Eddie was little, I tried to keep up with church functions, and with friends I had through church. However, as we all know, having young children can be very isolating. Eventually, taking the kids to church seemed overwhelming. Even the thought of requiring them to sit quietly for an hour caused me anxiety. Aside from that, wrangling children during church took all of the spiritual meaning out of it for me. I didn’t find the calm, peacefulness there that I once did.

When I started having children, I envisioned attending church with my family. I pictured us all lined up and happily spending Sunday morning together. After I actually had kids, and as Eddie grew older, that perfect church family image dissipated quickly.

I couldn’t even imagine him tolerating church for any amount of time, let alone a whole hour. I pictured tantrums, behaviors, screaming, and embarrassments galore. As I was personally struggling with my own faith, I was feeling great anxiety about taking my children to church AND the fact that I wasn’t taking them to church.

After much inner-debate, and after speaking with the leader of our church, I decided that I simply needed to try. I needed to get our little family in there and give an honest effort. So, despite the anxiety, and potential embarrassment, today we prepared for our first family church attendance in years.

This morning I gathered up everything I could think of that would keep Eddie happy. Water bottle…check. Sensory toy (soundless)…check. Headphones and music (just in case)…check. Small snack…check. GUM…check, check, and check. We drove (three whole blocks) just in case Eddie decided the walk was going to make him mad. Little did I know, after all that planning, that Eddie was the least of our problems.

We walked in as a group, and greeted friendly folks whom I’ve known for years. We met up with my mother, who also attends, and was willing to help with our kids. We then found a nice spot in the middle, AND close to an exit. Everything was going great, and I was excited that my family was looking very close to the image I had as a young mother. The music started, I went to stand up, and my youngest threw up all over both of us.

We quickly ran to the bathroom, cleaned up as much as possible, and then we went right out that back exit. The rest of the family sat through all of church, with minimal issues. Eddie was even told he was “good as gold.” We took a risk, and it was completely worth it. (Minus the stomach flu mishap)

I cannot wait to go back next week and try again. Who would have thought that after all those years of anxiety, Eddie did just fine. Sometimes it is so easy to get nasty scenarios in my head, that I can’t find my way around them. I know Eddie won’t be in the mood for church every Sunday, but now I know that he will be sometimes. That is enough for me.

Sounds of the Season

Like many kids, my son is a sucker for Christmas music. Starting with the first blip of a holiday tune heard over the radio, he is literally addicted until January. He wanders the house singing carols all day long. If a radio, or holiday show on TV, is playing in any room of the house, he will track it down. Once located, he will sit, stand, or dance while listening to the sounds of the season.

Eddie doesn’t seem to love every holiday song…and even has a love-hate relationship with a few key ones. For example, “Silver Bells” will turn on an immediate tantrum. Eddie loathes “Silver Bells.” All he has to hear is, “City…” and he is done. Through tears and screaming, we hear, “Change songs, please.” Then, we do it as quickly as possible.

Eddie also expresses his emotions openly through music when upset. He has a stirring rendition of “Jingle Bells” that we lovingly refer to as “Angry Jingle Bells.” He sings it with such malice, that you almost hate those jingle bells as much as Eddie does. The rest of the year he prefers the “Angry Alphabet,” but not in December. At least his angry songs coincide with the right time of year.

In spite of the couple songs Eddie sings angrily, it is really a treat to hear Christmas music coming from him all month. He really loves these songs, and attempts to sing along often. When all is quiet, you can hear his sweet voice singing “Winter Wonderland,” “White Christmas,” and many other classics. This child cannot easily ask for anything using age-appropriate language, but knows every lyric to every holiday song he hears.

New from him this year, are quotes from holiday movies, and particularly catchy one-liners. Some of you may recall Frosty the Snowman saying, “Happy Birthday!” in a very specific way. Eddie has that nailed. You may also have seen the Polar Express with your children. Eddie could have been the voice saying, “All Aboard!” If you ask Eddie about Santa, he will quickly say, “Ho, Ho, Ho!” It isn’t that he’s seen these movies a hundred times; it only takes once for a favorite line to squeeze into his repertoire.

Gum...is...Everywhere

Eddie has some sensory deficiencies that are very common with kids that are blind and/ or autistic. One accommodation he makes is putting things in his mouth. This is sometimes to explore different parts of an item, see what something tastes like (sometimes food…sometimes not), or to bite down for some “sensory” input though his mouth and the muscles in his jaw.

Last spring, while at an autism lecture, I heard about using gum as a replacement behavior for biting, chewing, and “mouthing.” I thought it sounded like a great idea. Not only could Eddie get some feedback through his mouth, which he often craves, but he can also be participating in age-appropriate behavior. What kid doesn’t like gum?

So, this fall, we introduced him to chewing gum. At first, it was like the best thing we ever did. His mood improved, and he really enjoyed the simple activity of chewing on a piece of gum. He even added new phrases to his repertoire like, “More gum, please.” We were so excited, and decided to send gum to school as well. For the most part, the gum is still working well, but it does have its drawbacks.

First of all, he goes through it at record speed. We are spending money on gum that is simply insane. He has become a true gum junky. He will chew a piece only long enough for the flavor to deteriorate, then we hear “more gum, please.” After weeks of him handing us his gum, and us sticking it anywhere handy, we finally taught him to throw it away himself. Duh, right? Wish we’d come up with that one sooner.

That led to some great orientation and mobility lessons. Not only did he learn where all the garbage cans are in our house, but he has learned them in every location he visits. After one time of showing him a new trash can, he finds it again completely by himself because he knows that he can’t have a new piece until he throws away the old one. We quickly learned that he has a knack for orientation and mental mapping; all thanks to gum.

The second problem was noted in my title: the gum…is…everywhere. It isn’t that he doesn’t always find the garbage, but he often accidentally gets it stuck to himself. Sometimes he tries to put another item in his mouth, and gets gum on that. His shoelaces were covered in gum, his sisters doll’s hair was covered in gum, and we occasionally find gum stuck to his pants. Sometimes, he pockets the gum in his mouth at night, only to wake up with it stuck in his hair, or on his arm, or all over his sheets, or like last night…on his lower back. What?!?

You’d think his parents would be smart enough to check for gum EVERY night, but that just doesn’t seem to happen. This is another case of taking the bad with the good. He loves the gum. It makes him happy. It often calms him and distracts him when necessary. So, for Eddie’s sake, and a little peace from a piece of gum, we will simply put up with gum…being…everywhere.

The Gift of Normalcy

Recently, our family had a festive holiday outing in our nearest city, and it left us feeling…normal. We put our three children in their precious holiday attire (Thanks Aunt Kristi and Uncle Frank!), paraded them onto Santa’s lap, cruised around the mall, enjoyed the tasty options provided by the food court, swung by the store on our way home, then enjoyed a nice evening watching a movie and drinking hot chocolate.

All of this was accomplished over the course of many hours without one sibling blow-out, and without the uncontrollable outbursts that sometimes take control of Eddie. After the kids were tucked in, my husband and I looked at each other and were simply astounded. He spoke my thoughts as he asked, “Is this what being a normal family feels like?”

This feat was not accomplished without the help of many throughout our day. Eddie’s physical therapy office offered the Santa pictures, goodies, and holiday activities like decorating cookies (which Eddie’s sisters loved.) At the same time, they had every therapy swing in their office hanging, which kept Eddie entertained for as long as necessary. They even had Santa in a private room, so our family could get a photo without the chaos of other children, and without the stress of waiting in line.

Eddie certainly took his time tactually exploring Santa. He sat down on his knee, and then checked out every piece of his costume that was within reach. First, he found his belt, and checked out every fine detail of his buckle. Next, he found Santa’s hat, and promptly tried to remove it for closer inspection. Finally, he spent a great deal of time quietly exploring Santa’s beard, and may have left a small piece of gum behind. (Shhh…)

After the blessing of a holiday event catered to kids like Eddie, we decided to tackle the mall. Eddie has some challenges walking great distances, so we didn’t know how long he’d last. He managed to walk for over thirty minutes, but we knew our time was short. We also knew his sisters were certainly not done “cruising” the mall. Luckily, we came across the security office, which was happy to loan us a wheelchair.

I must say, the idea of a wheelchair doesn’t sit well with me. I feel, if he doesn’t use those legs, he isn’t going to get stronger. My instinct is to push Eddie very hard, so he knows we believe in him, and that he can do it. However, in the spirit of continuing our outing, I was ecstatic to plop him in the chair. This indulgence granted to him, gave us two extra mall-hours, and allowed us to sit and eat dinner without utter chaos.

Going to town, is an outing that we hardly ever take on with all three children. The stress level gets high, Eddie’s mood swings wildly, and we come home feeling that family time for us will never be enjoyable. This past Saturday was a true gift. Maybe the best gift I will receive this entire holiday season.

For one day, we enjoyed the gift of normalcy. Funny, that to achieve normalcy we had to see Santa at a physical therapy office, and then push our son around the mall in a wheelchair. I guess that doesn’t sound very normal. But in reality, we were able to simply get our children dressed up, sit on Santa’s lap, and stroll through a mall on our own time. That sounds pretty normal to me.

I feel blessed to have been granted such a day, but still grateful for all the uniqueness in our daily lives. I wouldn’t have wanted to spend a holiday outing with any other kids, or in any other way. I’m thankful for this gift of normalcy, and that the “normal” I speak of is still on our terms, and with our son.

Calling All Gift Ideas

How is it already December…again?!? Yep, it is the holiday season, which means many of us are purchasing presents for our children with visual impairments. I have searched high and low for the perfect gifts for my unique child, and have instead come up with some options that will work, but may not be absolutely perfect.

I have stocked up on some new clothes, a few braille books, and sensory-stimulating devices. I have gone to my stand-by resources for children who are blind like the National Braille Press, Seedlings, and Future Aids. I even found some good buys on Black Friday. (Yes, I was a crazy person wondering the mall at 2:30 in the morning.) Sadly, I have yet to hear of a fantastic option for my blind, autistic son that he probably just couldn’t live without.

So, as a plea for assistance, and for the assistance of others also searching for the perfect holiday gifts…Help! Please, tell me (us) what you found to give your adorable child this season. Did you find a great buy? (Since I didn't win the Powerball jackpot, I could use a deal.) Did you find a unique gift that you can’t wait for them to open?

Please share your ideas, so the rest of us can use them to make our holidays remarkable for our children with visual impairments. There is pressure to not only pick a gift from ourselves, but the grandparents need ideas, too! By sharing, we can certainly expand our options.

As a final note…I feel I must make this comment every year. Don’t forget to take your toys out of the packages before wrapping them. For our children who are blind, working that hard to remove paper to end up with plastic and cardboard just isn’t fair. Give them the gift of not having to then tackle packaging. As we all know, it can take hours to free those toys from their plastic prisons.

Thank you in advance for your fantastic gift ideas. Happy shopping!

Giving Thanks

I’m not sure I’ve ever publicly given thanks to the many people in our lives that have been there for Eddie…and for us. I’m not very good at voicing my appreciation as often as I should, so in the spirit of Thanksgiving, I think I’ll speak up today in honor of Eddie’s staunch supporters.

To our family: thank you for simply being there for us in whatever capacity is necessary. This has meant childcare for a weekend away, childcare for siblings while Eddie travels to doctors, a needed hug during a rough patch, slipping us some cash when life’s expenses were excessive, or a pat on the back when all is well. We have taken many risks knowing that we had you as our safety net, which has allowed us to say “yes” to any opportunity for Eddie. Even though it’s important to know we can count on you, it’s even more important that Eddie knows he can count on you. You have earned his love and trust, without even trying.

To our friends: thank you for making us laugh, and for loving our family. You accept Eddie’s special needs, even when you suffer his wrath when he can’t help himself. Pinch after pinch, you still risk it for a nice big Eddie hug. You’ve never thrown us a pity party, or allowed us to tread down that dangerous path. You’ve watched me submit to unattractive sobbing, and helped me “get it together” when I was done. You’ve asked countless questions about Eddie’s doctor visits, cane usage, and learning braille. You’ve forgiven me when I can’t manage to remember to ask you about your own children, due to the life that sometimes consumes me.

To his teachers and therapists: thank you for being willing to try new roads, and for acknowledging that we’re an important part of Eddie’s school “team”. You push for independence, when it certainly isn’t the easiest route. You expect more of Eddie every day, without us having to remind you that he is capable. You just know that he is, and that he can. Even though some of you have never worked with a child who is blind, you act like you always have.

To his doctors: thank you for always speaking to us like equals. You don’t treat us like we wouldn’t understand, and the extra time you’ve given in explanations has been a blessing. You’ve answered a hundred questions, and returned every call regardless of its rating on a severity scale. You’ve enforced our decision to not just accept any doctor, but to seek out the best.

To fellow “special need” families: thank you for reading this blog, and for sharing when your life parallels ours. Some of you have broken ground that has allowed the rest of us to face greater challenges with our children. Thank you for living your lives out among the general public, so they can see that our children exist, too. You teach lessons every day that can only be taught by example. Knowing that there are thousands of families like ours, is a comfort. You can understand, and relate to us in a way nobody else could.

Lumping everyone into a category seems unfair, but I could write a book about what is done for us by each individual. This Thanksgiving, I recognize that we are surrounded by people that have never seen us as outcasts, and embrace the differences in our family. There are always some that don’t appreciate Eddie, and are uncomfortable around us, and I understand that. I’m just grateful for everyone that is not.

From Eddie’s family to yours…Happy Thanksgiving! Let’s all remember what we have to be thankful for each day, and count the many blessings in our lives. Most importantly, let’s remember to be thankful for our children who are blind. They have the most unique, and lovely, gifts to share.

Doctor Travels

Due to Eddie’s medical needs, we typically have to travel 3-4 times a year see medical specialists. Every three months he sees a pediatric endocrinologist to monitor his medications, every year he sees his pediatric ophthalmologist to monitor his vision, and every other year he visits a pediatric neurologist to monitor his brain.

Like many of you, I never mind loading up the car and heading anywhere to get the professional opinions that I value. Eddie has seen too many doctors that I either didn’t like, or that I felt were not giving him enough credit or minutes in their day. Unfortunately, in every profession, money is tight and time is limited. In the medical field, there can never be too much time given to our children.

Last week, Eddie and I took a three-hundred-mile road trip to see his neurologist and ophthalmologist. Both professionals I feel are highly capable, and extremely knowledgeable. We were lucky enough to find a great neurologist when Eddie was four-months-old and have stuck with him. The ophthalmologist took much longer.

Eddie saw five or six eye doctors before I was impressed with anyone. We heard many times that Eddie’s vision would never improve. We heard there was nothing anyone could do. We even heard that he really didn’t need to go to an eye doctor ever again. Most people know that an annual eye exam is important for general eye health, if for nothing else.

We knew that Eddie was blind. We knew that he wasn’t going to miraculously gain vision. We just wanted somebody that was willing to give him time to mature and possibly meet his fullest vision potential. If that meant he saw complete darkness, we were fine with that. We just wanted to make sure that it was an opinion based on evidence and exams; not lack of time or interest.

From his current ophthalmologist, we learned that Eddie did have some usable vision. Not for print, but for mobility. That kid can get around an unfamiliar room without any mishaps and he’s a genius when it comes to finding an exit. We also learned that he did need glasses; however, keeping them on his face is another story. He prefers to use them as a chew-toy.

The point is, by being selective of our professionals, we have found care we rely on and opinions we can trust. Our most recent medical journey didn’t uncover new information, but did provide me with peace-of-mind that Eddie is moving forward; even if at his own pace. I knew I was again in the right medical offices with the parting words from each professional we saw.

From his ophthalmologist, “Let me know if you feel Eddie’s needs aren’t being met at school. We’re here to help if ever needed.” This isn’t something medical professionals typically say. Usually there is a line between education and healthcare. However, when you need to qualify for services, you better make sure your doctor is on your side.

From his neurologist: “You forgot to mention one of Eddie’s strengths earlier. He is absolutely adorable and endearing.” That did it for me. The trip was definitely worth the time and money. If you call my son endearing, you are definitely on Team Eddie….for life.

What Is Your Perception of Blindness?

Before we know anybody who is blind, or find ourselves raising a child with a visual impairment, we have a preconceived notion of what it means to be “blind.” We hear stories from others, we watch people in the street, we see movies and watch television, and we read accounts in books of people who are blind. All of these images and concepts help us develop our perception of blindness.

I know when I was less-educated, I felt that people who were blind were often helpless, and without a future. When I would hear of a person who was visually impaired doing almost anything, I thought it was “amazing.” “How amazing, they get their own mail!” “How amazing, they can ride the city bus all by themselves!” Thinking back, I’m embarrassed by how narrow my scope of blindness was, and how little I understood people with visual impairments.

We must be careful to remember that whatever bias we carry into our relationship with our child, and whatever perception we have developed, will carry onto them if we don't change. If we tell them they’re “amazing” for taking out the garbage, we’ve just lowered their expectations for themselves. If we tell them that they are “amazing” because they complete an average task, we are telling them they can’t do better than average.

I'm not saying we shouldn't praise our children, but save the big cheers for the completion of goals you'd find "amazing" for any child. If you hear yourself saying, "That was fantastic...for a blind kid," you're probably lowering your expections. I'm suggesting you expect the same of your child, as you would from a sighted peer.

Recently, with friends, we asked ourselves a variety of questions about blindness. These included, “Would you have a person who was blind babysit for you?” “Would you use a hairstylist who was blind?” “Would you date and/ or ever marry a person who was blind?” “Would you ever go to a blind doctor?” (Yes, there are some.)The point is, would you answer "no" to any of those questions based on only their lack of sight?

Having now acquainted myself with many adults who are blind, I feel comfortable answering yes to any of those questions, but most don't feel the same. As a parent, I know that whatever limitations I place on people who are blind, I’m passing onto my son. Would I trust Eddie in any profession if he proved capable? Yes, I would. Would I want him to be second-guessed all the time simply due to his lack of vision? No, I wouldn’t.

I suggest we all take some time to analyze our own perceptions of blindness. We need to truly understand what bias we bring into our relationship with our children, so we can attempt to change what may limit them. Our children are just like any other, except without vision. That certainly doesn’t equate to ignorance, or lack of ability. They can achieve whatever they aspire to, and without limitations, imagine how far they could go.

When Is It Time?

One major question comes up constantly in relation to Eddie. It has been posed many times by me, his Dad, his educators, therapists, family, and friends. It appears in many contexts, within many topics, and in a variety of settings. This question, which you probably guessed by my title, is “When is it time?”

“When is it time to start solid foods?”

“When is it time to potty-train?”

“When is it time to start school?”

“When is it time to tackle camping?”

You can see the list is endless and ongoing. Most children come with a built-in estimation of milestones. They’ll walk around one. They’ll lose the diapers around three. They’ll begin kindergarten at age five. Our children, children like Eddie, have to create their own timeline. There is no checklist we can use for measurement, and no criteria we can compare to; we have to make it up as we go.

The latest question that has been posed by me, and many others that care about Eddie, is “When is it time to teach braille?” This is not a question that would ever be posed to your average child. “When do we teach them to read?” “When is it time to start literacy?” The answer is always…as soon as possible.

We have held this opinion when it comes to pre-braille activities. Our house is littered with braille labels, and Eddie’s collection of braille books rivals any child’s print library. Eddie has his own brailler, and spends time “scribbling” at school. We talk about braille constantly, and due to my career choice I am proficient in reading and writing braille.

We made sure that Eddie understood that braille meant something…even if he didn’t know exactly what it meant. You see, sighted children get to experience print from the moment they see a McDonalds sign, or even a traffic sign. Children who are blind need literacy presented to them. That is exactly what we have tried to do with Eddie by providing braille throughout his environment.

However, Eddie is now seven, and in the first grade. His peers are learning to read, and Eddie just hasn’t been “ready.” There are many lower-level skills that he has yet to reach. I have looked at every pre-braille checklist available to me as a teacher of the visually impaired, and Eddie appears to have a long way to go before we would be directed to start braille instruction. There’s that word again: checklist. I think I’ve already made it clear that checklists don’t apply to Eddie.

So, I have come to a solution that could be debated by some educators, but feels right to me. Eddie needs to start learning braille. He is seven, and if I wait for every pre-braille checklist to be marked off before he starts learning to read, he may never have the chance. Literacy is the foundation we build our education upon. I refuse to not give my son an opportunity to access that foundation.

Will Eddie ever read for fun? Will Eddie ever read textbooks? Will Eddie ever request a braille copy of a magazine? I don’t know. However, I do know that he needs braille in his life to ever have the chance to ask. So, to answer the question, “When is it time to teach braille?” The time is now. I’m marking it on Eddie’s timeline. First Grade: Began braille instruction.

If you happen to be asking yourself, “When is it time?” It probably already is. Our kids need opportunities to be successful, and high expectations. If we continue to ask questions, and never act upon them, they’ll never move forward. We need to push them, so they can succeed and mark all the boxes on their self-created checklists.

I'm Sorry

Eddie has been a child of few words his whole life. When he did begin talking, he used mostly echolalia, which means he repeated what he heard. This didn’t mean just copying words; but intonation, pauses, and even pitches. He still talks mostly this way, but will state phrases taught to him for certain situations instead of copying things he heard at random.

This weekend, I was able to witness a bit more language that tore at my heart-strings. A good friend of mine and I headed out on a road trip to visit a mutual friend. We loaded up the car with all our kids (five in total), and headed to a neighboring state. The kids all did great in the car, and really all weekend. However, travelling in such a crowd had Eddie a little bit on edge.

He was quick to be upset and was basically attached to my hip for three days. He slept very little, and his fuse was very short. The kids that were with us were curious about Eddie, so often crowded his personal space. They also were playing loudly from time-to-time, which Eddie didn’t really like. Honestly, he was like a grumpy-old-man, insisting on quiet, peace, and certainly no fun.

Sadly, when Eddie has an outburst, he often lashes out physically to pinch, hit, and sometimes bite himself or others. I suffered some battle scars that brought us both to tears. Not only do his outbursts physically hurt, but they hurt emotionally because we never want our children to hurt us. I want him to know how much I love him and care for him, so he doesn’t have any reason to hurt me. However, when it comes to Eddie, there is no “reason” involved.

Due to being autistic, he simply cannot “cope” sometimes and doesn’t know how to handle it, so he strikes out angrily. I try to just help him find the light at the end of the tunnel of rage he can fall into. Usually he falls apart, and then will want to be hugged while his sobs become a whimper. I hold him until the world is right with him again, and often he will then take a deep breath and move forward in his day.

This weekend, after the anger, and the sobs, and the quiet whimpers, he also found his words. Without prompts and without hearing me say it first, he quietly said, “I’m sorry.” All I could say was, “I know.” Now that he is learning that he hurts others and himself, he is apologizing for what he can’t control.

I know, Eddie. I know, you’re sorry, and so am I. I’m sorry that you have to face those demons every day. No matter how often I get hurt, or worse, you hurt yourself, I’m never going to blame you. Instead, I’m going to continue finding ways to avoid the meltdowns whenever possible, and bring ever more peace to your life.

Miracles and Cures

Previously, I posted an article about other people’s perception when it comes to children with disabilities. Not only how some people tend to put their foot in their mouth, but also why they believe these children have differences, and where they think blame should be placed. In response to my blog posting, I received some wonderful comments from parents just like me.

One such comment reminded me of the internal struggles I faced on the topic of religion. Like myself, I’m sure many of you have been approached about the power of healing, and that somebody was praying for your child to be “cured.” If you’ve ever read any portion of the Bible, you’ve probably seen many verses referring to the blind being healed, or somebody receiving the gift of sight. These verses are easy to find, and often easy to quote.

Due to the repetition of such religious stories and beliefs, it is not surprising that many of us have been approached about prayers for healing. Aside from religion, I’ve also heard countless times that “technology is always advancing,” and “you never know, they may find a cure,” and “he likely won’t be blind forever with all the scientific breakthroughs.” Every time there is new information in relation to any eye condition, I am informed by somebody that the day is near when Eddie will be “cured” of his blindness.

My responses mirror the comments made on my previous posting. Upon being approached about praying for healing this mother said, “If I had that mindset that something was "wrong" with him, I would see him that way. I had to love him the way he was.” Another parent stated, “I feel God was giving me a blessing - helping me on a path with a purpose and rewards not everyone is privileged to receive.” Finally, another woman said, “All children are miracles of varying abilities, as are their parents.”

The point is, we can’t spend every day praying for miracles and healing and still accept the children we are raising. I know that prayers are a gift. I am grateful for every prayer spoken in Eddie’s name. Prayers and hope give our loved ones something to do for us, when most of our road is travelled alone. They often can’t assist us with the daily struggles and fears, so they offer their hopes and dreams instead.

I certainly am not asking for my friends and family to stop praying for Eddie, myself, his dad, and his sisters. I simply suggest you pray for his continuing growth and development. You pray for us to be strong parents with a keen understanding of his needs. Most of all, pray for Eddie to be the happiest little blind kid anybody has ever seen.

Some People

Even though this may be hard to believe, there are still some people in the world who think it is the parent’s fault if they have a child with a disability. Some believe the parents participated in risky behavior while pregnant. Some even believe that a past wrong or horrible deed done by the parents, have doomed them to raise a child with a handicap.

Whether these inaccurate beliefs come from culture or religion, they can sting when voiced openly to those of us labeled. Last week, an offhand comment reminded me that there is much ignorance surrounding disabilities. I was speaking with a teacher, and she was commenting about another student with multiple disabilities.

While looking at the child in her class, she stated that while pregnant she did everything right. She ate all healthy foods, prayed daily for a healthy child, didn’t work too hard, and apparently was a general model citizen. She stated that she did all those things to make sure she had a healthy baby because she just knew that she would never be able to handle a child with a handicap. She stated that she had to make sure she wouldn’t have a baby “like that” because she wouldn’t be strong enough to raise them.

My first comment was that of course she would be able to take care of any baby, because that’s what mothers do. My second comment was that I had a child with a disability, and I did all the "right things" during my pregnancy as well. There wasn’t anything I did, or didn’t do, that caused my son to be different. She followed my comments by restating that she just couldn’t have raised a handicapped child.

She didn’t take back her remarks, or state “Of course you didn’t do anything wrong!” Not that I needed her to for my own confidence, but her words still bothered me. I was reminded again that I am a minority. There are more mothers without children like Eddie, than there are mothers that know exactly how I feel. The odds that she would’ve made those comments to a woman with “typical” children are much greater. She didn’t mean harm…but, in a minor way, she did harm me.

I know I didn't cause Eddie to be blind. Even for women that did make mistakes during their pregnancy, there is no blame to place. Our children are who they are, and we should be proud of them, and help them achieve great accomplishments. Looking backwards is no way to be an advocate; we must carry on regardless of our history.

I want people in the world to be cheerleaders for us parents that, in most cases, have a tougher road. I don’t want to see sideways glances, and wonder if I am being deemed guilty by an uneducated bystander who may have never known a child like mine. I want to be embraced by my community, and feel acceptance in place of judgment. Maybe I’m naïve, but a mother can dream. Some people will never understand, but I’m going to surround myself with the people that do.

Just Hang On...Literally

As I’ve talked about before, when Eddie wasn’t independently mobile it was hard to introduce him to new things. He wasn’t seeking out new environments, because he wasn’t able to look outside of arm’s reach. Therefore, everything he explored was presented to him, or happened to end up near him.

Now, he is walking around the house by himself. He is able to navigate all the rooms in our home, and will happily go through cupboards or examine countertops. With this new sense of adventure, he also will seek us out often, and then want us to either play a game, or help him with something.

In my previous blog, I explained how I often encourage him to go off by himself if he is just looking for an escort. However, if he is looking for something to do, or somebody to play with, I can’t always drop everything to attend to Eddie. This dilemma I find myself in has led to a new teaching experience for me, and a new learning experience for Eddie.

If I am doing the dishes, sweeping, folding laundry, or simply picking up the house, I am on a roll, and really don’t want to stop. I also realize these are all chores that Eddie needs to learn. My thought recently was that the teaching of said activities should commence. So, instead of being redirected by Eddie when he tracks me down, I simply tell him to “hang on.”

Eddie will grab onto my shirt, or sometimes the broom handle, and I explain the chores as they are being done. He can help when able, and I keep chatting while I'm working. This is a drastic change from him just sitting in the kitchen while I talk. He is learning that I move all over the place while cleaning up, and that each task involves a lot of steps that make up one chore.

This is yet another push towards independence, and it helps me get some things done around the house. I found out that when Eddie gets bored with the task at hand, he simply lets go and wanders off to do his own thing. He really just wants to be mobile, and often with the company of an adult. By letting him “hang on,” we are both getting our needs met.

My next step is to implement this new activity into Eddie’s own “chore chart.” My daughters both have a system for earning stickers, but Eddie has yet to benefit from my new found chore strategy. I think if he sticks with me for the majority of a chore, and listens to me chatter, he should earn a sticker for himself. He is starting to learn some life-long skills, and I can’t think of anything more sticker-worthy than that.

Eddie Can Do It

Today, I was in a movie theatre comparing myself to a clown fish. That doesn’t happen every day. I took my two daughters to see maybe one of the best animated films of all time, in my humble opinion. Most of you can probably guess by now that I’m referring to Finding Nemo. Just in case somebody reading this hasn’t seen the movie, it is a story about a very dedicated and over-protective father and his son…who happens to have one underdeveloped fin.

I have watched this movie over a hundred times on video cassette, and never once pondered how I was and was not like the father in this story. Maybe it was the impact of the large screen, or the fabulous 3D, but today I found myself relating to this clown fish as a parent of a child with an impairment of some kind. In the beginning of this movie, the Dad tells his son that he just can’t do certain things. With a look of sheer determination, the son immediately proves him wrong. I have seen that look.

That is when I started thinking about all the times I give Eddie more assistance than he needs, or discourage him from trying things that I’m not sure he can do. I want him to be successful, and therefore steer him away from struggles and greater challenges. However, by doing so, I am telling him by my actions if not by my words that he isn’t capable. I am breaking down his confidence instead of building it up.

Lately, I’ve been encouraging Eddie to do even more things independently. He often seeks out an escort, or simply someone to hold his hand as he moves around the house. Often times, he gets exactly what he’s looking for because we want to help him. Well, I’ve stopped being his personal escort, and instead push him to go forward alone. Instead of asking, “what do you need,” or “where do you want to go,” I don’t ask any questions. I simply say, “Eddie can do it.”

Amazingly, with those four short words, Eddie often turns around and moves forward alone. There isn’t a fight. He doesn’t cry like he used to when I’d say, “Eddie, I’m busy,” or “not right now, Eddie.” He just must be thinking to himself that if mom said I can do it, than I must be able to do it. As success keeps coming with that short phrase, I can’t help but kick myself for not starting to use it sooner.

Even though I had been leaning towards asking for more independence from Eddie, I am grateful for the movie that confirmed my suspicions today. Who knew that I would actually learn something from a movie date with my kids, and that I would find one thing in common with a fictitious clown fish? My new goal for myself is to remind Eddie daily that, “Eddie, can do it,” and then we will “just keep swimming.”

A Visit with Peers

When school started this year, I knew that I wanted to sit down with Eddie’s class early on. I wanted to explain those unique attributes that Eddie possesses due to his blindness. Sometimes, out of learned politeness, children are afraid to ask questions about Eddie because they don’t know if it’s “OK.” I wanted to make sure, from day one, that there was always an open dialogue about his blindness and his autism behaviors.

I began by explaining the obvious differences. We talked about braille and tactile graphics, and the kids passed around some of Eddie’s favorite books. Then, we talked about his cane, and how it is a helpful tool. We also had to talk about guide dogs, because kids naturally go there next. One child even brought up the concept of a guide pony, which surprisingly does exist.

The kids that shared Eddie’s classroom last year were quick to add knowledge that they had learned by observing him over the past year. For example, when I began discussing some of Eddie’s behaviors related to Autism, I mentioned that he throws tantrums sometimes. One student said, “Yeah, and he’s really loud.” I had to agree, because Eddie can get really loud.

I then explained that he gets so upset because some things that we don’t even notice, can be painful for him. I said that when he usually gets mad, it is because he can’t tolerate a certain sound, or something is hurting him that we don’t understand. I told the kids that it wasn’t quite the same as when they got upset if they didn’t get their way; that Eddie was actually hurting sometimes and he just can’t tell us why.

It is hard enough to explain Autism to adults, so I wasn’t sure how to easily explain it to the kids. However, when I mentioned that sometimes Eddie hurts, one little boy looked at me like I was missing the obvious. He quickly added, “Why doesn’t he just take an ibuprofen?” I couldn’t help but laugh as I told him that it just wasn’t that easy for Eddie, however, thanks for the advice.

Even though I know these kids won’t fully grasp the extent of Eddie’s differences in the first grade, I think it’s important to get the conversation started. Not only did I explain some things, but I added some tips for them to use to talk to Eddie. For example, I explained that he can’t see them on the playground, so it helps if they say “Hi” to him first. These little ideas will help them realize that Eddie is just a kid like them, and will give them opportunities to include him, when maybe they don’t know how.

Back to School

Eddie’s first day of school is now only two days away. I’m not sure who is more excited, Eddie, or me. One of the reasons I haven’t been up-to-date on my posts lately is because the last few weeks have not only been busy, but also pretty hard on Eddie. If your child is anything like him, they also may be struggling with the end of summer, and the sheer lack of a routine.

When school let out in June, I knew that we simply had to have some sort of routine to maintain Eddie’s sanity and general happiness. However, as much as I knew that to be true, it became impossible to provide. When every other week, day, or hour a new activity was upon us, it was just too difficult to set a schedule any of us could depend on. Also, we simply weren’t ready to give up our summer adventures to make sure Eddie had some predictability. Maybe we were being selfish, but we were also modeling the “real world.”

Aside from utter chaos, Eddie also has suffered some regression during the summer. For example, he is still able to walk independently, but instead of choosing that mode of travel, he’d rather scoot on his bottom. I’m not sure if this is truly regression, or simply laziness. Both can be characteristics of summer. I guess the answer to that will be upon us during the first day of school.

As a teacher of the visually impaired, as well as being his mom, the first day makes me nervous. If he shows up and isn’t willing to do anything, I’m afraid his teachers will think we sat around all summer eating ice cream and soaking up the sun. Yes, we did do quite a bit of that, but we also tried to maintain a respectable level of expectations. However, to be honest, I am his mom before I am his teacher, and I want us all to enjoy the summer. We don’t make Eddie submit to boot-camp, even though maybe we should.

As I sit on the edge of glorious time off, I feel butterflies in my stomach for the school days to come. I hope for great things during Eddie’s first grade year, and accomplishments that will amaze us all. I hope for growth in leaps and bounds, and for goals met that maybe weren’t even realized. Above all, I hope for his success; in whatever form that takes. All these desires come with the realization that he is who he is, and no matter what kind of year he may have, I’ll be proud.

Domestic Explorer

One of the first things you learn when you have a child with a visual impairment, is that they have to access the world through touch. They can’t sit back and observe siblings, parents, and even the television to learn what things are, how they work, and what their purpose might be. For our children to learn, they need to be active participants in their environment. Within their possibilities, there is always a hint of explorer, and sometimes a full-fledged adventurer.

It took Eddie awhile to tap into his inner explorer. He was scared of most things outside his reach, and waited for the world to be brought to him. We were always handing him things, and helping him access new information, but he just wouldn’t seek it out on his own. Within the last year, that has all changed, which is especially evident in our home.

We can tell where Eddie has been because the room looks like it has been robbed. Most of the cupboards will be emptied. If there was food to be found, it has been eaten…or at least tasted. If there is a sink, the water will be running. If there was anything on the counters, they have been either moved around, or simply swiped onto the floor. His characteristics mirror those of the Spanish Conquistadors looking for gold. He definitely leaves no “stone” unturned.

In Eddie’s wake, I don’t mind following and picking up. Yes, I know. I should be making him clean up after himself, which I do on occasion. We all know he has to be independent, and the additional step of cleaning helps him really learn where things go. However, I don’t want to discourage his new sense of discovery. Over time, we can develop a better method for searching, but for now, I simply love that he is willing to search.

Though most of Eddie’s missions are held within the house, there are times when he is outside that he also gets adventurous. This weekend, while with friends, he found his way to a fire pit. He got out of his chair onto the ground, and scooted right over to the rocks surrounding the pit. Luckily, there had been no recent fire, so there was no heat to contend with. Once near the rocks, he lifted his legs over and put his feet in the ashes.

I heard somebody ask if he was going to get in it, with a hint of disgust mixed with amazement in their voice. My answer was simply, “probably.” Eddie did just that. He climbed over the side and sat right in the remnants of last night’s fire. Then, he tasted the ashes, and quickly learned that was a bad idea. Before the taste I did hear, “Is he gonna put some in his mouth?” Can you guess my reply? “Probably.”

Even though daily playtime in a fire pit may not be a great idea, one excursion inside is just what Eddie needed to develop that concept. Think of all the information he received by being within the circle of rocks. He learned that it was a circle, that is was surrounded on all sides by rocks, and that after the wood burns it ends up a pile of icky tasking ashes that are gritty, and stick to your clothes and skin. Those are all things he wouldn’t have gained by sitting in a chair and basking in the heat of a fire, which he also loves to do.

I couldn’t be prouder of Eddie’s willingness to reach out, and access his surroundings. When he lacked obvious curiosity, I was jealous of parents whose children were always asking questions and into everything. I didn’t know how to bring the entire world to Eddie, if he was not interested enough to seek it out. It appears it only took time, and patience I don’t always have. Well, I’m off to see what my “Domestic Explorer” has gotten into now, and I can’t wait to see what discoveries he will make next.

Swimming, Riding, and Emotional Roller Coasters

Having a summer packed with activities has been fairly overwhelming for me, so I’m guessing my kids, including Eddie, are feeling the same way. Constantly being on the move has been fun, but also very exhausting. Yesterday, to add to the constant state of exhaustion, we went to our local theme/ water park. Eddie and his older sister had won complimentary tickets for doing a large amount of reading. Eddie’s was completed via audio books and listening to his parents, but still counted, as it should.

I knew we were going to be pushing our limits by taking him to a water park AND attempting carnival-type rides all day long. However, there was a large group of friends going, and his sisters were so excited to go. We wanted Eddie to have a chance to participate as well. The potential for fun was just too great, and there were so many things there he could enjoy.

The water park went very well, probably because it was first. He enjoyed floating the lazy river, and playing in the wave pool. It was over ninety degrees, so it just felt good. After the water, we wandered over to the rides.

Eddie’s first perk came with a courtesy bracelet that would move him to the front of most lines. I was a little nervous about taking advantage of Eddie’s multiple impairments, but was quickly justified. We cut to the front for the log ride, and he cried while we waited a mere two minutes. I can’t imagine standing in a hot, long line with him for over half an hour. He would’ve never been able to participate. Just to hear him laugh as we plummeted into the water was enough to tell me the courtesy bracelet was a good choice.

After that, Eddie only made it on one more ride. He was agitated, hot, and nobody was moving fast enough. We got him some snacks, but when the food was gone he was immediately mad. He threw multiple tantrums that involved screaming, pinching, and crying. This left me feeling sad, helpless, inadequate, and desperate. It was obviously time to go.

Maybe because my brother and his wife recently had a baby, I related my emotions to those feelings I had when my kids were newborn. Remember when you have that sad, tiny baby in your arms and you can’t do anything to make it better. They cry, and cry, and you try everything you can think of, but nothing is good enough. You feel like as their mother, you should have all the answers, but you’re failing. You end up crying just as hard, if not harder than your child, because you simply don’t know what to do. Do you remember?

That is exactly how I feel sometimes having a child who has very few ways to express himself. Yesterday, it took all I had not to burst into tears. When I really could think of no other method to calm him, we left the park. Though I was sad to leave, he had been there for seven hours, which was outstanding. There were a hundred smiles, and multiple spurts of laughter throughout the entire experience. There were also countless tantrums towards the end, but the more positive moments made it all worth it.

As usual, we just went for it, and decided to make it a family outing. We didn’t want to go without Eddie, so we didn’t. This morning, he is sleeping in, which is very rare but well deserved. Today, we are off to camp for two nights. Regardless of the suspected ups and downs, I also suspect it will be lots of fun.

Finding the Button

It seems that this summer I am living in hotels. This week, I am lucky to be attending an International AER event. This acronym is truly a mouthful, but for those who are curious it stands for the Association for Education and Rehabilitation of the Blind and Visually Impaired. It is mostly for professionals in the field of blindness, but there will be one session specifically for parents.

During the opening ceremonies, the keynote speaker was an entertainer, who happens to be blind, by the name of Tom Sullivan. While giving his motivational address, he made a comment that stuck with me. He said that a mother had once told him that her child could be motivated, she just had to find their "button". My first thought was that the parent was a positive thinker, and her observation was insightful. My second thought was that she may have been a tad naive if she thought there was simply one button.

If I envision Eddie as a devise that simply needs to be switched on, I most certainly don't see one big, red button. Instead, I see the panel on an airplane with more than a hundred switches, lights, dials, and indicators. It seems that every goal requires its own button and every milestone its own indicator. Just because we have successfully found the switch for potty training, doesn't mean we have found the switch for eating with a fork. Thinking about the complicated dashboard that is Eddie, I feel like I need the equivalent of a pilot's license to successfully navigate his way through life.

The positive outlook that one mother had, is not an easy attitude to carry every day. However, it is an important attitude to have with the professionals surrounding our children. All of us have been told at some point that our child would not do something. For example, I was told Eddie wouldn't walk, and he has found that button. If I had believed that diagnosis, I wouldn't have pushed for the services that demanded him to be mobile.

Simply believing there is potential motivation for any task, is the first step in believing our children can be successful. No matter how many buttons we have to find, the search must continue. The mother who mentioned the button was right on target. There always is a button, but somebody has to find it. As parents, we have to make sure the search goes on...even when we might be the only member of the search party.

Learning by Example

Last week, I had the opportunity thanks to a program called “Teachers of Tomorrow” to attend the National Federation of the Blind convention in Dallas, TX. It was the first time in my life I had been anywhere where the people who were blind outnumbered those that were sighted. I went to multiple classes and meetings, but learned the most through observation, and by getting to know some adults that happen to be blind.

I am in awe of the people I met, and what they have accomplished. I am not saying that those who impressed me were amazing “for being blind.” They were simply amazing, regardless of being with or without sight. There were university professors that I could’ve spent days listening to, some sighted, and some blind. There were workshops geared toward children with multiple disabilities, which were led by phenomenal teachers, some sighted, and some blind. I ate meals daily with lawyers, experts in technology, heads of businesses, parents, and students…some sighted, and some blind.

There were a group of students who were visually impaired that had earned college scholarships. We were able to hear a little bit about each one of them, and what they had accomplished in their lives. They also spoke of their future aspirations. Some were working on graduate degrees, some were raising families while attending school, and the range of future professions was across the spectrum. Many of those students made me feel like I had been standing still all my life. From community service to educational achievements, I was in their dust.

Like most parents, I often wonder what the future will be like for Eddie. After this convention, and the examples I learned from, I don’t worry about him being blind. I never did much anyway, but I’m even more convinced that it will not hold him back. Yes, I worry about the autism, and other medical conditions he has, but not his blindness. Last week, I saw an entire cross-section of the population of blind adults. Not all of them were without other disabilities, but all of them had a level of independence that I respected.

As a parent, and a teacher, it is very important for me to be involved in multiple organizations, with multiple people that rejuvenate my passion for educating children with visual impairments. I left there filled with stories of success, and to be honest, stories of failure. I learned that not every child with a visual impairment is given a good education, or given access to tools they need to succeed. I want to make sure I provide those tools. Not only to my students, but most importantly to my son. As we all know, our parents are our first educators, and I aspire to be nothing but the best for him.

I Like That

To date, most of Eddie’s language has been echolalia, or simply repeating something he heard. He does ask for certain things, but in a manner that was “fed” to him. For example, when thirsty, he ALWAYS says “I want water, please.” He never varies it by saying, “Can I have water?” or “Mom, please get me some water.” He sticks to a script that gets the job done.

During the last week of school, we started hearing something new from Eddie. It was dictated to him, but he was using the phrase in a variety of settings. This new phrase was, “I like that ___.” The blank was filled in with the word “book”, first. Then, I heard him fill it in with the word “song.” It seemed Eddie was trying to express himself. This was a very different thought process than simply asking for his needs to be met.

Just a few days ago, we were at a birthday party for very close friends of ours. Their son, a boy in Eddie’s class, was turning six. He had a party with a group of boys from school, and Eddie was there along with the rest of our family. He didn’t participate with the boys, but sat in a chair where all the action was happening. Even though Eddie appeared to be in his own world, a couple of the boys came up, and said hi to him. When we arrived, I even heard one of them say, “It’s Eddie!”

While at the party, it didn’t appear that Eddie was taking much in, or that it seemed to matter that we were at a party. He liked when we sang, “Happy Birthday,” and of course liked to have cake. After a couple hours, we went to leave and Eddie said, “I like that party,” followed by, “I like that birthday.” Well, I was pretty floored. The fact that he was acknowledging where we were, and that he liked it, was a big jump from the kind of speech we typically here.

Sometimes it is hard to tell how much Eddie comprehends. I often get asked, “Does he understand me?” “Does he like this, or does he not like something?” Often times, I reply with a standard, “I don’t know.” In reality, their guess is often as good as mine. So, the idea that he can start truly expressing some feelings is outstanding.

Last night, I was surprised to hear something new, but a little defeated to learn that maybe Eddie didn’t quite comprehend his new phrase. As we do every night, I was giving Eddie an injection that he takes regularly. He usually tries to fight it a little, but has been getting it daily for five years, so he is very familiar with the routine. Once I was done, Eddie said, “I like that shot.” It appeared that Eddie didn’t really understand what it meant to “like” something.

From his behavior and experience, I know that Eddie does not like “that shot.” This means we have some work to do. Today, I decided to work harder to teach him what “like” and “not like” mean, and how they are different. If Eddie has the language, the first step is already done. Now, I just need to teach him to apply it. I think the next big success will be when he says, “I don’t like ___.” I hear that constantly from his sisters, and now I can’t wait to hear Eddie say it, too.

Outsmarted

I enjoy being right. I tend to have strong opinions that I often don’t back down on. Even though I feel I excel at knowing everything, my husband may disagree. In fact, he gets downright giddy when I slip up, and becomes ecstatic when I admit it. Every once in a while I give him the pleasure of admitting I’m wrong, but secretly I usually think I’m still right. Maybe I am being a little sarcastic, but who doesn’t like being right whenever they can?

This trait I have, good or bad, seems to have been passed down to my oldest daughter, Molly. She argues with almost everything we say, and we have to provide real proof if we want her to take our side. For example, when I was pregnant with our third child, Molly knew without any doubt that we were having another girl. Lucky for us, she was right.

However, in case she had turned out to be a boy, we took Molly with us to the ultrasound. We knew that if the doctor himself didn’t tell Molly it was a boy, she would most certainly not believe us. When the announcement was made that we were having a girl, she turned to us and said, “See, I told you.”

Just the other day, Molly had the nerve to outsmart me in a car full of other kids. We were moving down the highway, and Molly’s cousin leaned forward to ask me if Eddie would ever drive a car. I said, “No, he probably won’t do that.” I told her that cars weren’t set up for people who were blind to drive them. Molly then asked about the car that is made for blind people. I had been telling her about a car that has been developed, and can be operated by a person without any sight. This car does exist, and men who are blind have driven it, but research is still being done to perfect it.

When Molly brought up this new technology, her cousin said, “Yeah, why can’t he drive that car?” I told them that yes, he might be able to someday, but that I imagined such a car would be very expensive. I said that even if people who are blind could drive it, we wouldn’t be able to afford it. I sat there thinking that the conversation had ended. I had advocated for Eddie by explaining that he could drive a car, but that it probably would cost too much. In my mind, I hadn’t lowered my expectations, or their own.

Molly leaned forward in her seat a couple minutes later and said, “Mom, what if Eddie ends up being a rich blind person?” Huh. It appeared I was outsmarted. I hadn’t limited Eddie’s abilities, but I had limited his future income, and therefore lowered my expectations. I felt like an idiot. I always talk about “setting the bar high,” and I myself lowered it. I couldn’t help but laugh out loud and announce that Molly had a very good point, and that I hadn’t thought of that. Not only did she surprise me by her insight, but she also made me extremely proud.

Another Opportunity

Due to the unforeseen gift of having a son who is blind, I was provided yet another opportunity this last weekend that I probably never would have had otherwise. I recently completed a graduate program for teaching students with visual impairments, and my graduation was on Sunday. I had applied, auditioned, and was accepted as one of two student commencement speakers. An honor that I think requires a person to have a unique circumstance, and a story they are willing to share.

Obviously, my unique situation is that I have a son who is blind, and because of that sought a degree to help him. What makes me appear unique to a general audience, doesn’t feel very out-of-the-norm to me. How I feel about myself, is that I am just a mom like millions of other moms. In general, mothers will do whatever it takes to care for their children and to have their needs met. In my case, that simply required going back to school.

In my speech, I was hoping to get across a few things. First, I wanted to mention that children who are blind are still just children. Second, that there is a large need for more teachers of the visually impaired, and by stating that, maybe I brought light to a profession that is not widely known. Third, I was hoping to inspire graduates to pursue opportunities to help others whenever possible. I originally went back to school simply for my family, and for Eddie. Luckily, I am now able to help other children that wouldn’t have access to appropriate educational services.

Due to my brief public appearance, I was able to spend the weekend discussing children who are blind, and the need for greater services. I brought light to the fact that many leave high school illiterate because they didn’t learn to read braille, or how to use low vision aides. Also, that the unemployment rate for adults who are visually impaired is much greater if they are not able to read and write. I was asked many times if technology has made braille obsolete. As I avoided rolling my eyes, I stated that we would never consider to stop teaching print to the sighted child, so why would we stop teaching braille to those that need it.

This experience was so rewarding because I was able to speak for myself, parents, and other educators that may or may not agree with me. However, I had a chance to reach an audience of greater than twenty thousand, and if they had given me all day, I would have spoken for hours in the hopes of improving the education of visually impaired students everywhere. I felt like I was given this moment for a reason, and even though I may never know whose life it affected, I hope that it did positively affect at least one.

The day after graduation, I was brought down to earth with a giant thud. I had to rush out of town to get Eddie to a doctor appointment halfway across the state. Not only did I have my three kids, but also two of our nieces. On top of that, my husband stayed behind to visit family. A ten hour road trip, with an appointment in the middle, and five children under the age of ten, quickly put me back in my place. I was again reminded that I am blessed with simply being a mom, which above all is my most important job.

Outstanding Effort

Last fall, we had a very respectable doctor from a very respectable hospital tell us that Eddie may never walk independently. We were seeking an orthopedic consult, and instead were offered a free wheelchair, and a possible Cerebral Palsy diagnosis. I don’t even have to say that we were crushed by this appointment, and the information we were not prepared to get.

Luckily, the doctor’s forecast was inaccurate, and Eddie continues to make great strides in mobility. For example, this past weekend we went camping with some friends. We were surrounded by great canyons, drop-offs, and natural hazards. (Just like any good camping trip.) For the first time, I was concerned that Eddie may walk off all by himself. I have never had to worry about that before…ever. Eddie never felt comfortable enough to walk off without a parent. Now, he strides towards that independence more every day.

Also on this trip were multiple opportunities to hike. We had recently thought about getting a wheelchair with heavy duty tires so Eddie could join us on family hikes. Even though we thought about it, neither of us has yet been convinced that he needs such a device. This weekend, we simply decided to put his hiking legs to the test. Eddie joined the group just like all the other kids, and walked until he just couldn’t take another step.

Taking Eddie on the hike brought up a hundred teaching moments that wouldn’t have occurred had I sat and waited with him at the campsite. We talked about the slope of the trail, and how it continually went up and down. We talked about the sounds around us of birds, marmots, and the gigantic waterfall nearby. We were able to discuss the weather, and how it was very windy, which Eddie loved. These were all discussions he would have missed if he hadn’t experienced them.

In light of Eddie’s drastic growth for mobility this year, he recently was acknowledged in front of his whole school. He was given an Outstanding Effort Award and an Academic Excellence Award in orientation and mobility. At an assembly in front of the entire elementary, he walked to the front, greeted the principal, and accepted his award. Even though it took him at least three times as long as the other kids to walk up to the stage, the whole audience was patient, and applauded him greatly when he arrived.

Again, I am a witness to what can happen when we don’t put limits on our kids. If we decided to not give him opportunities based on safety, or concerns, or any type of low expectation, Eddie would not blossom. If we had given in, and accepted the wheelchair, he’d be using that right now instead of a simple white cane. It is frightening to think that every decision we as parents make can affect our children so much. I just hope every day that I make the right choice, and that Eddie will forgive me for a few blunders now and again, which are simply part of life.

Educated By Life

When Eddie was born, I am not exaggerating when I say he really was the first blind person I met. To me, our situation was very unique, because I knew absolutely no other person I could talk to that could relate to our new parenting adventure. Not only could I not call up a parent of a child who was blind, I didn’t even know anybody that had a child with special needs. I am sure many of you found yourselves in the same situation.

Now, when I look around my life, I am surrounded by people that have children like mine, or similar to mine. I know people with children that have visual impairments, and we laugh about similar experiences that happen to those in our special club. Even though my education in the world of blindness has grown immensely, I remember when I wasn’t so “worldly.”

There was a time I would have been the annoying stranger that was gawking at your children. I would have seen a little boy or girl with a cane and felt a mixture of sadness and maybe even pity for that child. I think of that person I was, and I was extremely ignorant about the world of special needs. I had no experiences, and therefore could not relate at all to other people raising these unique youngsters.

Now, I have surrounded myself with parents, teachers, and friends like me. Sometimes, when I enter a room and introduce Eddie, and state that he is blind, I will hear, “my child, too.” Suddenly, this kid who used to be extremely unique in my eyes is just like many of the kids I know and work with every day.

Even though I now feel just as comfortable with children that have special needs, as I do with those that do not, I try to remember a time when I was less knowledgeable. When strangers seem to be gawking, or asking too many questions, I remind myself to be friendly and honest about Eddie. Instead of being bitter, which I sometimes am, I decide to be an educator.

If Eddie was the first blind person I ever met, he certainly will be the first blind person many other people meet as well. His blindness may not be unique to me anymore, and those in my circle, but he will always be unique to somebody. Hopefully, the memory he leaves with people, and we as his parents leave with people, will be a positive one. That way, the next time they see another child with a visual impairment they won’t be intimidated, and maybe will be brave enough to simply say, “Hello.”

What is the Question?

Having a child with special needs sometimes means over-thinking every decision throughout your day. I wake up and wonder what his mood will be like, and how he is feeling. Once that is determined we have to decide if Eddie will go to school, or stay home. His daily health means possible medications changes, which is yet another decision. This is just the start of judgment calls we make on a regular basis.

When we get invited to a function out of our normal routine, we first decide if we are going to go, and then decide if Eddie will go. I do this all the time; birthday parties, holiday gatherings, field trips, and even family vacations. I have been going through the same thought process since Eddie was born. Asking myself, will he have a good time? Will it benefit him to participate? What will be the drawbacks of him going? What positive outcomes could there be? Finally, is there anyone to babysit Eddie if we decide not to take him?

You can see that a simple decision is turned into an over-analyzed fiasco. Recently, yesterday in fact, I decided to change the question I ask myself when I am unsure about Eddie joining us on any occasion. Instead of asking "Are we going to take Eddie?" I am going to ask, "How are we going to take Eddie?" It takes the same amount of thought, but changes it to a positive light. I can focus on how Eddie can have fun instead of how I am going to leave him home. To be honest, I hate leaving him home. By deciding he will be included, I can relieve myself of the heartache I feel when he misses out.

Does this mean Eddie will always be glued to my hip? Um, no. When we have date night, he can stay home with the other two kids. When my oldest gets invited to a birthday party, that doesn't mean Eddie gets to go, too. But, when we decide to go to a parade, or camping, or out to lunch as a family, I will do my best to always choose to have Eddie go, too. There are days I need to put some space between us, but really I feel that way more toward my 3-year-old than Eddie. Toddlers are trying, aren't they?

If I continue to ask "How?" instead of "Will?" all of us will benefit and become a stronger family unit. This is something my husband does all the time. He never over-thinks these decisions, and always assumes Eddie goes everywhere we go. Not to stereotype, but like some men, he just doesn't over-analyze. Some days, it drives me crazy, but other days I envy that train of thought. I guess I am aspiring to be more like my husband in that way; which frankly, is a little scary. However, the end result will certainly be beneficial to Eddie.

Mutual Appreciation

Yesterday, Eddie attended a field trip at a park. He had a chance to explore a variety of things in an entirely new environment. Of all the things at the park, I was most excited to have him ride the carousel. I thought he would enjoy the sensation of going around and around, and the carnival music that always accompanies the antique horses.

We had a lot of walking to do, and he did throw a fair amount of tantrums, which we simply worked him through. I kept thinking, if we could only get to the carousel, he would have a marvelous time. His balance wasn’t quite good enough to ride a moving horse, but I knew they had benches he could utilize. So, I just kept saying, “Wait until the carousel!” I figured with all the built up excitement, he would be thrilled to give it a try.

We did eventually make it to the carousel. Luckily, the attendant let us climb on to claim seats right as we arrived. After that, a flood of middle school students burst through the gate and crowded onto the horses. The noise level was unbelievable. Eddie was comfortably seated, next to a peer, with his hands clamped tightly over his ears. Then, the ride began to start.

I have to say I was waiting for shrieking, or some other form of protest. However, Eddie surprised me by staying quiet and attentive, with his ears adamantly protected. I did expect big smiles, and huge laughter. It turned out, I was just happy for him to sit quietly, even though there were no smiles or laughter of any kind. It turned out the carousel was pretty much a bust. Again I was reminded that Eddie is just completely unpredictable.

As we left the park, I was sad that the day appeared to be uneventful for him. I had built up the carousel in my mind, to something he would want to do repeatedly, and he didn’t even seem to enjoy it. I thought about how we had embarked on another adventure that didn’t grab his attention. Just as I was wallowing in a little bit of pity, we came across a street musician, and Eddie stopped abruptly in his tracks.

The musician was playing an acoustical guitar very softly. Eddie turned ninety degrees to face this man, and was about two feet from him. Eddie stood very still, and the musician began playing a blues rendition of “Row, Row, Row Your Boat.” Eddie slowly began to smile, and within seconds he was dancing, and laughing. When the song was over, I gave the musician a dollar, and thanked him. The man said that Eddie’s attention was a true gift, and thanked me.

I am reminded that the most enjoyable moments in Eddie’s life are always a surprise. No matter how hard I plan for a big event, or a momentous outing, he will always find joy by thinking outside the box. Other people walk right by this man without even a glance. Eddie took the time to stop, face him, and really attend to his music.

Does that happen very often for the guitar player? That he is really “seen,” and appreciated for the musical gift he brings to that street. Not only did the musician brighten mine and Eddie’s day immensely, Eddie brightened his day as well. Next time we visit the park, or any part of the city, I’ll be listening for street musicians. I’m sure Eddie will be, too.

Mothers' Day Crafts

Most moms look forward to finding out what creative gifts their kids will bring home for Mothers' Day. It seems that a majority of teachers, at the elementary level, make sure to have a class project designed for the big day. As a parent of a child with a visual impairment, art projects make me a little nervous. I want my child to participate in activities that are meaningful to him, and art can be a tricky subject if you have a teacher that is not perceptive to a child's particular needs.

Recently, I was talking to another parent of a visually impaired child, and we were laughing about the projects that travel home in our kids’ backpacks. Occasionally, you will see a perfectly colored drawing, or something made out of construction paper that is precisely cut and accurately placed. I realize that some projects can be done with assistance and still be enjoyable for our kids. However, if it is too perfect, and way beyond my son’s current art level, I really don’t feel like gluing it in his baby book.

I would much rather see a plain white paper with a bunch of scribbles than anything produced by a teacher. I want art work to come home that Eddie completed. It does not have to be perfect, as long as it is done by him. So last week, with Mothers' Day looming, I knew classrooms were making cards, and I wondered what Eddie would do, or if he would participate at all.

On Mothers' Day, I received a beautifully painted coaster that my daughter made in her class. That was a good example of a project Eddie would not have liked, but she absolutely loved. From Eddie, I received two very tactile projects. One was a jar covered in tissue paper that had been glued on, which was made into a flower vase. The other was a piece of clay he had molded, added glass rocks into, and then silk flowers were stuck into the clay. It appears to be a decorative center piece that was most definitely made by Eddie.

What a great gift, to have items obviously made by my son. It turns out the classroom project was very visual, so Eddie's aide came up with something else that Eddie could do, and that he would enjoy. That is the kind of thinking that I truly appreciate. Now I have two uniquely homemade gifts that were created by my son. Because they were made by him, I can be reminded of what he can do, instead of what he can’t.

Have Cane, Will Travel

A year ago, we could not get an orientation and mobility instructor to work with our son. He felt that there was not any progress to be made and wanted to wait until he was more independent. I kept telling him that Eddie was constantly making gains and if he was moving at all, he needed instruction in orientation and mobility. Well, I didn’t stay in that area long enough to wage a battle on this front.

As I have discussed, we ended up moving to another state. I was able to get an orientation and mobility instructor involved that was more than enthusiastic about working with Eddie. She immediately was trying out different canes and helping him feel confident about walking without holding anyone's hand. While she was not at his school, his aide was exceptionally diligent about always keeping him on the move.

I would visit him at school and hear multiple times, "Cane on the ground," "What did your cane find?", "Use your cane." Within three months, Eddie was striking out on his own. Something he had not been willing to do for three years of being on his feet. It is hard to know if he started walking freely because of the increased instruction, or if it was just because he was ready. Either way, I am still grateful every minute that he has found some footing.

This week, I was walking Eddie to school, and was able to witness him astound me yet again. We were covering the routinely travelled two blocks slowly, but surely. At first, he was walking on his own, but kept veering down the natural slope of the road towards somebody’s yard. Since we were making time that was geologic at best, I grabbed his hand so we’d get to school by lunch.

As we reached the intersection just before the school, I was moving us both forward. Eddie stopped abruptly, and pulled me back to his side. He very clearly stated, “Listen.” Next, he said, “Car.” Sure enough, a car was coming up the road in our precise direction. Imagine that, only a year after being denied orientation and mobility services, he is safely navigating traffic.

I was so angry when he was denied those services, that I decided it was not worth the energy to fight. Honestly, I felt that if he did not want to work with Eddie, he shouldn’t be a part of Eddie’s team. Well, I think Eddie definitely showed him. I can state with certainty that this won’t be the last time I feel like calling someone and saying, “I told you he could do it!!!”

Mr. Eddie Turns Seven

Every time a birthday comes around, I find myself shocked that it has arrived. Can Eddie really be seven? Have I really been writing for Family Connect for over a year now? I remember writing about Eddie’s last birthday and the good and bad things about coordinating a birthday for a child with a visual impairment. This year, I found the same difficulties and new successes.

The biggest obstacle is deciding what type of birthday party, if any, to hold for Eddie. First, Eddie loves the song “Happy Birthday,” and especially loves the day his name is added to it. Aside from that, he doesn’t understand the birthday concept. He doesn’t wait all year for the day of presents, or cake, or the grand birthday party. Instead of a party outside of school, we decided to incorporate his birthday celebration with his kindergarten class.

There is always the typical snack time; when parents bring cupcakes or something similar. We went along with that theme, but also added treat bags for the kids. We included some candy, a minor toy, and a card with the braille alphabet. Eddie gave all the students a brailled Valentines’ card in February and they loved it. So, we decided another braille gift would go over well. Even though we didn’t have a “party,” the kids in his class knew that Eddie has birthdays, too, and they were all included.

Eddie does not seek out peer interaction, and often literally runs from it. We know that he doesn’t seem to care who knows it is his birthday, and has no concept of friendship. However, the other kids know all about that stuff, and we want them to see Eddie as a peer in whatever capacity he can participate. I think it is important to remind his classmates that he isn’t all that different from them.

Aside from our bribery with treat bags, Eddie has some exceptional teachers that work hard to include him as well. Today, I came home to a great surprise. Those teachers, along with his class, created a unique birthday present for Eddie. What travelled home in his backpack today was a book made just for him by every kid in his class titled “Happy Birthday, Eddie.” Each child had a page to color, and then they were given puff paint to outline every image. The best part was that they had artistic freedom. It was phenomenal. Eddie has never received a better gift and I have rarely been this touched.

If I ever thought he wasn’t being included by peers, the next gift proved me so wrong. Along with the book was a picture drawn by an older student. Under the picture it said, “I like to play to you.” On the drawing there was a swing set and two stick figures. One of them was holding a cane.

Spring Break 2012

This year, we decided to have an adventure during spring break. We reserved a yurt in a state park campground on the ocean. If you do not know what a yurt is, it is a round hut-type dwelling that is quite small. Ours was big enough for a set of bunk-beds (queen size on bottom), a futon that could be folded down, and a small table. The best part about choosing this option over tent-camping was that the yurt was heated, and fully enclosed to keep out any spring rain.

As you may have read last summer, we love to camp. Before children, what seems like decades ago, my husband and I camped quite a bit. After children, we found that camping with young kids was tricky, and camping with Eddie was downright difficult. While tent-camping last summer, he spent much time in the van with the air conditioning on and music playing to drown out the sounds of his little sister. The a/c was required because Eddie doesn’t regulate his body temperature very well, but the music was simply for coping. Even though we made it work, the situation was not ideal.

That is how we decided on the yurt. We needed somewhere with heat and warmth so Eddie would not get sick. We also needed somewhere he could have alone time behind a closed door that didn’t feel like punishment to us. For those reasons, the yurt was a perfect fit. Also, simply by having beds to throw our sleeping bags on, everybody slept well every night. This doesn’t even happen in our own home.

Over the course of our trip, Eddie had multiple meltdowns. That is typical anyway. My husband and I decided that he wasn’t any more upset than he would have been at home. Based on that comparison, we felt like he had a good time. Someone recently commented on another posting of mine about setting different expectations for our kids to gauge success. We certainly had to do that for this trip.

For our girls, we knew they had a good time because they played in the ocean, collected numerous sand dollars, flew kites, and smiled all day long. For Eddie, his tantrums were comparable to home, he walked independently on the beach with his cane, he sat by the fire and ate marshmallows, he tolerated long car rides with the family, he had his fair share of smiles, he slept through the night, and he ate every meal provided. For those things alone, we think yurt-camping with Eddie was a success.

It isn’t about setting the bar at a different height; it is about setting the bar on a different scale. We weren’t lowering expectations, but changing them instead. The next time, we’ll expect more, and he’ll be ready for more. Based on this camping excursion, there will certainly be a next time and I can’t wait to go.

Jealous...Not So Much

A common struggle in my life is not being jealous when I see other boys Eddie's age participating in sports, birthday parties, and other "age-appropriate" activities that he shows no interest in doing. My best friend's son is in Eddie's class, and I often watch him play sports thinking that Eddie would be doing the same thing if it wasn't for autism. Honestly, if he had the single disability of visual impairment, I'm sure he'd be up for much more.

Eddie just doesn't seek out social interaction and certainly would rather not spend time with peers. So, I go to event after event, watching other kindergarteners, and can't help but think, "What if?" It isn't that I want Eddie to be somebody different, but I do sometimes crave a normalcy to his childhood that does not exist.

This week, I attended an event and for the first time was not jealous one bit. In fact, the sadness that comes with jealousy was nowhere to be found. I only recognized the idea of being jealous because for once, I just wasn't at all. This was again at a sports event; watching my friend's son in wrestling practice. We were in this small building without ventilation that I could discern. There were young boys everywhere sweaty and stinky, and I was so glad I didn't have to attend this regularly.

It was great watching the boys and their enthusiasm, and they were certainly in their element. I can see why they sign up, and why their parents support it. For once though, I was glad not to be sitting there week after week. When I finally stepped outside, I felt like I had been deprived of fresh air for years. You would think the jealousy might arise due to the camaraderie amongst the boys, but...not so much.

As many of us know, wrestling is a great sport for those with visual impairments. There are many successful blind athletes in the wrestling arena. So, is there a chance I may have a wrestler in the future? I suppose there is always a chance. If he went down that road, I would be his biggest fan. In the meantime, am I grateful to spend my afternoons doing something else with my kids? You better believe it.

Accidents Happen

This weekend, Eddie had a fall down our one and only staircase. It is not a carpeted stairway, but does have walls on each side to keep him contained. Eddie was crawling up the stairs, which is his only way of independently making the climb at this time, and somehow ended up going down instead of up. He was near the top when he fell, so I can imagine it was very scary.

My husband heard his loud descent, and quickly ran to his aide. (I was not home at the time.) He scooped Eddie up and comforted him until he stopped crying. After a recuperation period of less than ten minutes, Eddie calmed himself down. His dad checked for bumps, bruises, and broken bones, but none were to be found. This was a huge relief.

The uneventful end to this story may have you wondering why I felt like sharing this misadventure. I wanted to share to tell you what we, as parents, did next. There were a few choices we could have made in relation to Eddie and the stairs.

2) We could have insisted that Eddie only travel on the stairs with an adult, and never independently.

3) We could have decided to let Eddie keep his current level of independence in our home, without restrictions.

Instinct makes us want to protect our children from any accidents or the chance of being hurt. However, if you have read any of my earlier postings, you will know that sheltering Eddie was not what we chose. We picked option number three, encouraging him to continue his strides towards independence. We hoped he would be courageous enough to tackle the stairs again, which he did that same day.

When Eddie first began climbing stairs, we didn't just let him do so with complete freedom. Instead we taught him skills and techniques to allow him to safely travel up and down. We knew he needed specific tools to travel alone, and we gave them to him.

Every obstacle he decides to overcome may have challenges. We know that he can, and will, get hurt from time to time. However, we are going to be the last people to tell him he cannot do something, especially if it is a step towards independence. Frankly, Eddie's sighted sisters have fallen down the stairs many more times than Eddie. Maybe Eddie could teach them a thing or two about safe travel.

Brainwash Attempt

The ongoing saga of Eddie and his little sister continues to this day. He often struggles to be around her in any capacity. She has started saying, "Eddie doesn't like me." As a parent, you expect your children to squabble from time-to-time. However, you don't expect their disagreements to alter every aspect of day-to-day living. At least, that is certainly not something I expected.

CC is 3 1/2, and Eddie has lived with her for over half of his life. Sadly, all that time they have spent together has not helped him adjust to his younger sibling. There are moments they have fun together. This is usually adult-facilitated play, and a game Eddie really likes. Making these moments fun takes a lot of orchestration on the adult's part.

I recently attended an autism workshop and they spoke highly of "social stories." Many of you may be familiar with them. It is a way to teach a child appropriate social behavior, by telling a story about how to behave correctly in a given situation. I believe the idea is that if you teach a desired outcome through the "social story," the student will apply that same outcome to their own life.

On a whim, I am taking the "social story" idea and applying it to my struggles with Eddie and his sister, CC. I wrote a poem (loosely applied term) in print and braille, applied some tactile stickers, and two scratch-n-sniff stickers to really get him interested. I made two copies; one for home and one for school. This is my parental attempt at brainwashing him into believing that CC is actually a lot of fun and not as overwhelming as he thinks. Honestly, I would try almost anything to end this family saga. For the sake of sharing, here are some verses from the story, to demonstrate just how desperate I've become...

CC is your sister, she plays and plays all day. She likes to run around a lot, and has a lot to say.

CC is only 3 years old, she is your little sister. Molly is 8 years old, she is your big sister.

Little sisters are very busy, and they can be lots of fun. Sometimes they are a little scary, because they run, and run, and run.

CC is a good friend, to play with every day. She is always up for fun, in every kind of way.

Eddie loves his little sister, and his sister loves him. When they play nice together, everybody wins.

Trash Compactor

Eddie is constantly testing boundaries and pushing to have things his way. Luckily, the educators that work with him are aware of his motives most of the time. This week, he decided he wanted the teacher's chair instead of his own and was met with a surprise.

Apparently, every time they were at his work table, he would inch towards the right, trying to sit in his teacher's chair. Each time, she would remind him that he couldn't sit in her chair, and that he had to find his own spot. Eddie would reluctantly move towards his seat and plop down. However, he finally decided to push the limit even farther.

Eddie, as usual, walked up to his work table and began moving towards the right to find the desired chair. She said, "Your chair is to the left," but Eddie kept moving right. A couple more times she told Eddie to move left, but he insisted on continuing to the right. Upon hitting an object with his cane and then his feet, Eddie promptly sat down. He sat right in the garbage can. To his surprise, he found himself with his seat in the can and his feet in the air.

He insisted on doing things his way, and found himself stuck in the trash can. This is what I lovingly call, a natural consequence. I absolutely love when these moments occur in Eddie's life. When children who are blind don't have an opportunity to make a mistake, or are guarded over constantly, they don't understand that accidents happen. We tend to move obstacles from their path, and grab their arm when they might trip, and even clean up their spills. It is easy to forget that everyone makes mistakes, and we all learn from them.

A couple years ago, we had to stage a very real natural consequence to get Eddie's attention. We have a gas fireplace, with a glass front that can be very hot. Eddie kept playing by the fireplace and we kept telling him that it was "HOT!" and that it could hurt him. Eddie continued to stray near it even with multiple warnings. We decided to swiftly touch one of his fingers to the glass front to teach him what "HOT!" meant. Eddie jerked his finger back immediately and scooted away from the fireplace. There was no damage done, and he hasn't played near the fireplace ever since.

I'm guessing I could spout information to Eddie and his sisters from now until forever, and may never see retention. I also think that nothing sticks better than a natural consequence. Hopefully, Eddie will choose listening to his teacher over being a trash compactor the next time he sits at his table.

Family Vacations and Trepidation

For some reason, when I think about planning a family vacation, the only word that comes to mind is trepidation. Since I don’t use that word very often, I decided to look it up in the dictionary. The definition stated its meaning as “a state of fear or anxiety.” Well, that sounds just about right.

I used to picture our family taking long road trips and joining the crowds of tourists at Disneyland. However, since we were blessed with Eddie, the family vacations have been kept to a minimum. When he was a baby, we traveled to Hawaii and Alaska to visit family. He was an avid traveler that kept his cool on every flight; unless of course teeth were popping in. Now, I’m not sure how he would react to a vacation that might include plane travel or days in a car.

My oldest is eight and her best friends are making the maiden voyage to Disneyland. She brings it up frequently wondering if she will ever get to meet a princess or shake hands with Disney royalty. When she was younger, I had planned on taking her right along with her friends. Now, I long to go as a family, which means I am waiting for Eddie to be ready.

I know that it is perfectly OK to go on a vacation without Eddie, but I’m not ready to count him out just yet. Today, he is not ready for Disneyland, but he might be in one or two short years. I think waiting for that determination is fair to him and to the rest of us. We unfortunately can’t manage a trip to Disneyland multiple times in our children’s youth. The trip will probably only happen once, and I want to give Eddie a fair shot at joining us.

The big question is whether or not I am being fair to his sisters, and I think that I am. My oldest may disagree, but when she does finally get to go, she will forget all the times she complained of not going. I think she will simply be happy to be there. As for now, we’ll be sticking to trips a little closer to home with less at stake if Eddie has a horrible time.

He loves carnival rides and grand adventures. I have no doubt big family vacations are in our future, but we need to wait just a little longer than most. For those of you that don’t know, Disneyland does have an amazing descriptive audio program for children who have visual impairments. At least, that is what I have heard. Someday, Eddie and I are going to find out for ourselves.

Even Hot Dogs

In a New Year’s posting, I discussed my resolution to get Eddie to eat with utensils. As I’m happy to report, we are still working on that daily. He is now willing to use utensils, with help, instead of just getting really mad when we put one in his hand. This is one more step towards independent eating. However, I did have a psychological set-back earlier this week.

I made Eddie lunch, and decided that since it was a hot dog, eating with his hands was appropriate. I set the plate in front of him and watched him immediately pull the “dog” out of the bun and eat it with his hands. Next, he tore the bun apart and ate it a little at a time. As you can imagine, before he was done eating there was ketchup all over his face and hands. The whole event was not pretty to watch.

When I think about all the things Eddie needs taught, I often get overwhelmed. This is why I pick one big thing at a time to focus on. While I had my radar set on using utensils, I had been neglecting to see how inappropriately he was handling food we all normally eat with our hands. I started to think about sandwiches, fried chicken, nachos, and all the other yummy things we don’t eat with a fork and spoon. He doesn’t eat any of those items in a way that is appropriate in public.

Our ultimate goal is to eat in a restaurant as a family and to see Eddie eat just like everybody else. I can see that this is going to take some serious time. For now, the focus is still on utensils, but I’m going to pay attention to other eating habits as well. At six you can get away with a lot of things. At sixteen, you can get away with nothing. Constantly looking forward is important, no matter how daunting it can feel.

When Eddie was a baby, an amazing teacher told me about a mom who realized she had to teach her child who was blind how to eat an ice cream cone. As we know, if you don’t lick evenly around the sides, ice cream drips everywhere. The story pointed out that the mom was overwhelmed at the prospect of teaching one more thing step-by-step and that few things would be learned incidentally.

Now I know exactly what that woman felt like. We don’t only have to teach Eddie how to eat a bowl of soup, or mashed potatoes, but we also have to teach him how to eat finger-foods…even hot dogs.

Incidental Learning

Those of us that have therapists in our homes and/ or have had our children in the educational system for any amount of time understand what incidental learning is all about. Basically, it defines the type of learning that happens when we aren’t trying to teach anything. It includes good things, like our children putting their dishes in the sink because we did. It also can include not-so-good things like those curse words that slip out while we stub our toe, or get a surprise bill in the mail.

One of the first things I learned about having a child with a visual impairment was that incidental learning is almost a lost cause. He isn’t going to learn how to do the dishes simply by being around somebody else doing the dishes. He needs to get his hands in the sink and be operating the scrubber. Every step of every procedure needed hands-on training. This is the most crucial when pushing him towards independence.

I’ve learned that he can’t pick out his own clothes until he learns what purpose clothes serve, where the clothes come from, how the clothes get clean, and why clean underwear is a must. Does he have these things down? No. Will he someday? I like to think so. For now, it is just important that I know he needs that brickwork laid before we can get to the bigger issues in life.

To my delight, I was surprised to find this morning that there is indeed incidental learning taking place in our house. We often forget that Eddie isn’t the only kid around here that needs an education. We focus so much on his independence and working towards him doing things for himself, that our daughters are overlooked. We hope every day that they are learning in a variety of ways that don’t take our complete undivided attention.

Lucky for us, our daughters are learning incidentally. Apparently, our oldest has spent so much time watching us push Eddie to do things for himself that she has learned to grow some wings of her own. Molly greeted us this morning, before we were out of bed, at 5:45 am. She proudly stated, “I’m ready for school. I’m all dressed, my hair and teeth are brushed, and I already ate breakfast.” Well, OK then. Yes, it was too early for sure, but I was so proud. I turned to her Dad and stated, “Next stop…college.”

Feeling Isolated?

The greatest benefit of FamilyConnect is hearing that there are families out there with the same types of children as me. It is a way to connect with a population that is few and far between. Just the other day, a mother commented on one of my blogs that her daughter was my son’s twin. Wouldn’t I love to meet them!?! Even though we are not connecting face-to-face, we ARE being connected. That feeling of isolation minimizes every time I hear those types of comments.

I purposefully said minimizes, because it never really goes completely away. Since my son was born, I have struggled with the lack of connections in the regions where I have lived. Previously, I have tried to help start-up local organizations for families that have children with visual impairments. Everyone was very excited in the beginning to form strong bonds, but that excitement faded quickly and support mostly died out.

Initially, I thought this was the nature of a rural area, but it seems to be happening in urban regions as well. I have had many conversations about why that is. We are a small community of families that have a great thing in common. Why aren’t there “support” groups and organizations popping up all over the place? To answer that question, I do have a few theories.

First, our children are VERY unique. Blindness is usually a small thread that links them together, but often multiple disabilities make them all individuals. We’ve all heard the saying, “If you’ve met one child with autism, you’ve met one child with autism.” That exact saying is true for children with visual impairments. Their needs are great and varied and one child’s strengths could be another’s weaknesses. When we first meet with another group of families connected by visual impairments, we are looking for our “twin.” However, the likelihood of that is slim to none. That realization can be disheartening, and can keep us home when the next event rolls around.

Second, just because we may meet other families with children like ours, doesn’t mean they will become our best friends. In the big picture, our child with a visual impairment is a very small part of who we are. We also come from different backgrounds, cultures, beliefs, and personalities. We may have some common struggles, but overall we are as unique as our kids.

Third, much of our life can be taken over by a child with a visual impairment. Even though the idea of forming organizations with similar families sounds great, it also sounds like a lot of work. When we are compounding therapies, school, extracurricular activities, and doctor visits we really don’t want to add another thing to the list. Life can already be too busy and overwhelming.

With those thoughts in mind, I am still not giving up on the idea of a local family organization in my area. I think there is value in it beyond measure for not only my son who is blind, but also for his siblings, for myself, and for his Dad. That being said, I have to own up to my third reason listed above. I am SO busy!

Even though I cannot make it happen today, or even this school year, it is a personal goal of mine. Next fall, I hope to work towards a local organization that will minimize that feeling of isolation even more. To be honest, I want to vent or cheer to somebody else that has been in my shoes (or at least in my shoe size), and I want to do it in person. So, for those of you that are members of local organizations as great as FamilyConnect, tell me how it’s done. Share your secrets of success so when I get my feet under myself, I can run with it.

Go Team!

This winter, my eight-year old, Molly, has been playing on a club basketball team. Upon signing her up, we knew we’d be travelling on Saturdays to games throughout the county. We also realized we’d be introducing Eddie to a new environment of loud gyms, sitting on bleachers, lots of kids, dribbling basketballs, and cheering crowds. Since Eddie can be adverse to loud noises, we were a little nervous about how this would turn out.

So far, he has been to two games and has done amazing. He sits in the bleachers (with snack in hand) and takes in all the sensory input a basketball game has to offer. We bring noise-cancelling headphones, but he must feel adventurous at times because he occasionally takes them off. As long as his younger sister is entertaining herself elsewhere, he is happy to sit with us until the final buzzer sounds.

Since he was doing so well enjoying the minor league (very minor) players, we decided to raise the bar. Friday night, we took him to a high school girls’ basketball game. Molly’s team was playing a mini-game at halftime and we thought bringing the whole family was the way to go. A high school game is quite a step-up from the club games. The elements are the same, but magnified by ten. On top of typical game sounds, there were also a dozen cheerleaders and a pep band.

When we stepped into the gym, Eddie quickly covered his ears. He had a hard time walking with his cane and trying to put one hand on each side of his head. After seeing his initial response, I was scanning for the nearest exits. Our friends were at the top of the bleachers, of course, so we made our way up there. I only hoped the noise level would stay loud, so a screaming 6-yr-old could be evacuated in the event of a sensory overloud emergency without causing a massive scene.

Thankfully, all my fears were unfounded. We made it through the entire 1 ½ hour game. Eddie made good use of his own coping strategies. He covered his ears when needed, buried his head in our laps for extra protection, and generally took in his surroundings. There were moments of laughter, pep band dancing, and often he had the look of “Where the heck am I?” but didn’t protest once.

As usual, Eddie surprised us. I was so glad we included him in the social outing. Yes, it is easier to let him stay home in peaceful surroundings, but that isn’t the life I want for him. I want our neighbors, friends, and school community to know Eddie and to interact with him. Only by attending social events as a family, can we help him grow in our community. Now that we’ve conquered basketball, who knows what will be next? I can’t wait to pick out our next sensory adventure.

The Master of Pinching

Over the years, we have struggled with multiple behaviors that involved Eddie hurting himself or others. In the beginning, he often would mostly cause injury to himself. He would hit himself in the head, hit his head on the floor or on a wall, or use objects as personal weapons. Watching this behavior was very upsetting and we struggled with ways to deter it. Over time, we redirected this behavior, and see it less often.

However, we are now seeing him lash out to others, which is in some ways more unsettling. The first time we saw this was through biting at the age of two or three. It came to a point where we were nervous to have him rest his head on our shoulder because we anticipated getting bit at any time. It doesn’t matter who you are, when you are bit at the nape of your neck, the first instinct is to through or drop the child. Luckily, Eddie fared better than that, but the sheer anticipation was enough to make us edgy.

He has moved past biting, but now is the master of pinching. Every time he becomes upset, he reaches out for the nearest flesh. It can be a parent, a teacher, a sibling, or an innocent bystander. He is an equal opportunity pincher. At school, his poor aide has marks on her hand from his daily abuse. Even though she tries to be on the look-out, he can be as quick as a snake and get her before she even has a chance to flinch. Hearing about that, and witnessing the behavior, is extremely hard for me.

I understand that his sensory impairments make it hard for him to stop himself, but that doesn’t make it easier to witness. My son is the cause of pain for people that love and care for him, and making him see reason has been useless. We continue to work on different approaches, including alternative coping mechanisms, but the progress is slow and painful…literally.

Yesterday, Eddie pinched me so hard it brought tears to my eyes. After evaluation, I realized it wasn’t the pinch that caused the damage; it was mostly that he hurt my feelings. Even though I know he doesn’t always understand his behavior, my own child hurt me and I couldn’t help but feel sad. I think those of us with children who have special needs often encounter problems we can’t solve quickly that cause us emotional pain, if not more.

Even though his behavior cannot be ignored, I try to remember that his motivations differ from the typical child. He does not want to hurt me out of anger, but out of his personal frustration and agitation. I continue to reach deep inside for patience that must be there somewhere. Right? I do not see myself as overly patient in general, but I think I’ve learned to dig some up when I need it. That is maybe the best coping skill us parents can have, patience. With that, we can handle almost any situation, no matter how painful it can be.

Hi, Eddie

Earlier today, I was working in my office when the door slowly opened and I heard a voice say, “Hi, Eddie.” This is how my son greets people. He is in the process of learning how to talk to others, but often his references are confusing to those that don’t know him. When he says, “Hi, Eddie” I know he is trying to say hi to me. So, I say, “Hi, Eddie,” can you say, “Hi, Mom?” Usually, he immediately says, “Hi, Mom.”

Eddie’s tricky way of communicating can make it hard for him to be understood. For example, when he says, “Want some lunch?” he means he is hungry himself. He says, “Are you all done?” instead of “I’m all done.” When he is trying to make a statement with a question, I usually cue him with, “What do you say?” Following that, he will sometimes say, “I’m all done” or “I want lunch.”

This is not an uncommon step in delayed talkers. Instead of coming up with his own words, he is using ours to get his needs met. This is an exciting time because he is talking more daily, even if it isn’t always using proper grammar. If you are like us, and you have waited years for words, you’ll take them any way they come. He may not ace language arts anytime soon, but he is reaching out to others and giving himself a voice.

Right now, his school staff is working on improving his speech so he does learn how to speak properly, which requires cues and prompts when he’s at home as well. Sometimes, Eddie’s other “language” is hard to follow by those that don’t know him. They may think he is actually asking them a question, when he is asking for help, and miscommunications can be very frustrating for Eddie. Therefore, we try to educate those around him so they can understand what he’s trying to get across.

What I’ve always tried to do is acknowledge every type of communication. If words come out of his mouth, I want him to know right away that they mean something. This has turned into a favorite game of ours. He sings often, and when I recognize a song he is singing, I try to add the next verse. I like to think this has helped Eddie increase his communication skills. He goes from being in his own world, to sharing a conversation with me through music.

I’m learning so much about Eddie all the time and acknowledging his way of communicating, no matter how unconventional, has been so important for our relationship. I’d say if you sometimes struggle understanding your own child, try to meet them on their level. It’s not much different than mimicking the sounds of an infant, and equally effective.

Resolution Time

Happy New Year! It is time to make some resolutions. My understanding is that the more you share your resolutions, the more likely you are to keep them. I don’t always find this effective for me, because I can’t remember one resolution that really stuck in my life…ever. However, this year I have an opportunity that I have never had before. I get to share via FamilyConnect, and throughout the year, I’m sure I’ll have a chance or two to answer for what I write today.

Of course I have personal resolutions that relate to losing a few pounds, balancing my budget, and in general being a better person; but these are not unique to Eddie and of no interest to anyone but me. So, I’m going to talk about a resolution that relates directly to my son with a visual impairment. I’ve decided, I am going to push Eddie to do more for himself, and to complete whatever parts of any activity he can. For example, he might not be able to put his shoes on, but he can certainly Velcro them. He may not be able sort the silverware, but he can put them in the drawer.

It seems that because I am his mom, I can’t help but enable. Isn’t that in a mother’s blood? We see our children struggle, or run into obstacles, and we want to help them. We want them to succeed at whatever cost. The problem is with children who are blind, our assistance is often to their detriment. If I never let Eddie try to do anything, he will never learn how to do it. That is SO easy to forget when we are surrounded by children that simply see and do.

My biggest struggle in this department, seems to be eating with utensils. I’m guessing this is a battle in many homes. For at least three years, Eddie has eaten independently with his fingers. Therefore, he has no desire to use utensils. We have created a monster. A child that stands out in the cafeteria, stands out in restaurants, and stands out at our own dinner table. This is not OK with me, but I allow it to continue. Why? Well, it is easier…and faster. If I make him use utensils, it becomes a struggle that takes three times as long and I have to eat before or after he’s done because we work as a team throughout the meal.

Even listening to my explanation makes me cringe because I have talked about this before; many times. I know better. I know I don’t want him to eat with fingers forever, and I don’t want to work “as a team” during every meal for the rest of our lives. I know that if I diligently work with him during every meal at home he will eventually be independently eating with utensils.

That is what has led me to my New Year’s Resolution. In general, I resolve to push Eddie towards independence. The measure of this resolution will be him eating independently, with utensils, by this time next year (and hopefully much sooner).

Since I’m feeling brave enough to share my resolution, please post yours as well. What will you strive for this year for yourself or for your visually impaired child? Maybe by going public, we’ll all find more willpower to “stick to it.” Here’s to an exciting 2012!

Walking Tall

Finally! At the age of six, Eddie is taking some completely independent steps. For over two years, he has walked with a hand held, or even a simple touch on the back of his neck. Within the last week, he has begun walking without any type of touch or support. We stay within close range and when he starts to feel insecure, we just let him know we are still there. With a few words, he marches off again.

I can’t explain how long it feels like we have waited for this to happen. We have taught him to hold his cane, but he has had little use for it when an adult was always guiding his steps. Now, he needs a cane because he is guiding himself. That is extremely exciting for me! I can’t wait to send videos to all his previous therapists to show them what they have helped him achieve.

Last night, Eddie took about fifteen steps totally independently in front of his 8-yr-old sister. She leaped out of her chair and exclaimed, “Eddie!” “Eddie, you are walking by yourself!” She startled him so bad that he fell to the ground; then, she started hugging him and he was laughing hysterically. For one thing, I didn’t know she hadn’t seen him do it yet. For another, I didn’t know she was also anxiously waiting for the day he could walk by himself.

I tear up thinking about how many times I’ve wished for him to come this far. When Eddie was six months old, his neurologist told us that he would walk by eighteen months. Well, he didn’t even crawl until he was three. I began to wonder when Eddie might strike out on his own, and now I finally have my answer. At six and a half, Eddie is walking.

I find myself staying close, worried that he’ll run into things or maybe fall down. I have to remember that I want him to be independent and to give him freedom to explore. Yes, he falls down, but he simply gets right back up. He has a knack for avoiding obstacles while scooting and crawling, and he has maintained that skill while walking. I have to remember that this isn’t the first time he has had independence, just a different way of executing it.

Honestly, I can’t think of anything I’d want more during the holidays than for this gift Eddie has given us. He is walking! Alone! I am beyond happy and quite easily moved to tears at the sight of him. All the tears of frustration and sadness have been worth it for these recent tears of joy. He has reminded us that he can meet our expectations and that if we keep setting the bar high, he will clear it.

Holiday...Parties

Yes, it is another holiday post. This time of year certainly gives me a lot to talk about when it comes to my son with a visual impairment. Today, Eddie’s kindergarten class had their holiday party. Because Eddie participates in class whenever he can (which means whenever he is not throwing a tantrum), his Dad and I wanted to attend. I mean, why wouldn’t we? This is his class and these are his peers; in the small town we live in, they will always be his peers.

First off, we walked through the front doors of the school and we heard Eddie wailing down the hall. I think to myself, what a great start! (Insert sarcasm) The other parents, siblings, and students are moving into the classroom and we are moving down the hall to find our loud son. Come to find out, he simply was mad and tired because it was almost the end of the day.

I left Dad to wait with Eddie while his sister and I went to his classroom. The other kids were singing for their parents and I was surprised that I didn’t feel upset. Sometimes, the sight of his peers acting in a typical way makes me sad. Nothing is more typical than a class of kindergarteners singing Rudolph. This time though, I didn’t mind; maybe because I see him included whenever he is willing and maybe because my friend’s children were in this class. Either way, I was happy to be there enjoying how adorable these kids were, even if Eddie was not with them.

Once word spread to Eddie that there were cookies and snacks in his classroom, he immediately appeared. My son isn’t one to miss out on a treat. He wandered right through the classroom with 26 children and their parents and happily sat at his desk eating a cookie. I was surprised that the sheer crowd didn’t get to him and proud that he participated as much as he did.

Just like the other parents, we were given special gifts made by (or with) Eddie and Eddie was given a present from his teacher. Nothing happened that didn’t include him, except for what he wouldn’t participate in. I was so happy for the inclusion I saw from the staff and his peers. No, it wasn’t a typical holiday party where my son stood alongside his friends and sang songs. But he did sit with his peers, eating a cookie, and laughing along with a holiday video. That sounds pretty typical to me.

Holiday Letters

Being December, it seems I can’t get away from writing about the holidays. Besides buying presents, another thing that comes up annually is our holiday letter. Not everybody participates in this tradition, but many of my family and friends always send out cards and often letters this time of year. I’m sure you’re familiar with the holiday photo card and possibly an insert about what loved ones have been doing over the past year. This can be yet another hurdle for those of us with children that are as unique as ours.

After Eddie was born I did not send out a holiday letter or card for a few years. It was just too hard to write and stay 100% positive. It wasn’t so much that I didn’t have anything good to write about Eddie. It was more the realization that I couldn’t write all the things I wanted to say. I wanted to brag on about his first steps, his first words, his sense of adventure, and other typical milestones. The hard part was that I couldn’t. His milestones did not match his peers and I felt few people could really understand our annual accomplishments.

I wanted to say “He crawled!” when he was three and that “He said his first word!” when he was three and even that he “Adventured outside on his own!” when he was four. These were all great things in our lives, but I was afraid they'd be met with pity from others. In hindsight, my worries were unfounded. The family and friends that I cherish enough to send out holiday greetings to have been nothing but supportive over the years.

I think they would have been happy to hear all of our news, the good and the bad, and would have felt blessed to be included in our lives. So, for the second year in a row, I am writing and mailing holiday pictures and a letter. Trying to keep it to a page, I don’t elaborate on every little thing, but simply let people know we are happy, healthy, and proud of the life we have.

For those of you that are struggling through the season, or maybe finding it hard to reach out for support from others, remember that everyone struggles at some point in their lives. We may be struggling with what to write about our kids, but others could be struggling with personal tragedies they endured since the last holiday season.

Remembering that we all need support in some way is reason enough to reach out this holiday season. Even if you don’t share with everybody, share with somebody. What are you thankful for this year? What do you wish for in the New Year? By giving words to your emotions and deepest wishes, you may find courage to make them come true.

Searching for Presents...Again

Well, here we are again. Those of us with children who have visual impairments are desperately searching for the best holiday present ever. The only problem is that we have no idea where to start. I look at my son’s room full of musical instruments, funny sounding stuffed animals, CD’s, and braille books galore and do not know what direction to take next. It seems I’ve already covered most categories.

It isn’t simply his blindness that makes him hard to shop for, but also his developmental age. He doesn’t grow by leaps and bounds annually, so he still likes the same types of things that he did last year. It isn’t like my 8-year-old who wanted Barbie toys last year, and this year has moved onto teenage stars of Disney. Her new preferences give me new present ideas, but I can’t use that strategy with Eddie. He loves all the same things now that he did when he was three, and I’ve purchased about everything I want to in that age category.

Yes, I try to push him with toys that will expand his horizons and expect more of him, but I also want to get things he’ll really love. None of us wanted a stocking full of math books when we were kids, and constantly buying toys for educational purposes simply sounds wrong. Of course, I’ll sneak a couple in, but there should also be some things that are “just for fun”.

If he could communicate his wants better, I’d simply ask him what he wants this holiday season, but this is yet another struggle with my darling Eddie. He is learning how to ask for basic needs like food and water, so I think asking for a Drum-set may be beyond his capabilities at this time. I must say, after listening to his sisters constantly asking Santa for everything they see on T.V., I’m sort of grateful I don’t have to hear that from Eddie, too.

Even though shopping for Eddie is hard, it is also a joy when I find the right thing. Here are a few things that I have gathered so far this shopping season: lap harp from Toys R Us, shapes and sounds puzzle from Exceptional Teaching, t-shirt with a Drum-set that works when you beat on it from Old Navy, a talking clock from Perkins, a Mickey mouse sing-a-ma-jig from Wal-mart, and some books from National Braille Press.

Now that I’ve thrown my list out there, I’m begging you to do the same. If you find a great holiday gift, or simply have an idea that worked for you and your child in the past, then PLEASE SHARE! I will be so grateful for any new ideas, and I’m sure other parents will feel the same. Hopefully, there will be many comments on this posting to help make the holidays unforgettable for our children with visual impairments.

Jam Session

I often worry about Eddie and his other two siblings and what their relationship will be like. To date, he shows little interest in them and often irritation at their efforts to include him. When talked to, he often says “goodbye” or covers his ears and drowns out their voices. As a result of his quick irritation, he always prefers to be in his room by himself than with the rest of the family. During any group activity, including meals, he finds the quickest escape route and makes his exit.

Today was a pleasant deviation from most nights. My oldest, Molly, needed to get in some reading time for school. Instead of finding a quiet place for her to read to me in seclusion, I decided to have her read to me in Eddie’s room. As usual, he was in there, and I simply hate seeing him spend all night alone. Molly was up for it, so we made ourselves at home lying on Eddie’s bed while he sat on the floor in a beanbag chair.

After Molly started reading, Eddie slowly moved closer to us until he was up on the bed. He perched himself on the edge and bounced to the rhythm of the book she read. Luckily, it had a very steady verse that made for a great beat. Not one time did Eddie say goodbye or try to escape. He was enjoying the reading as much as we were. To my amazement, Molly began verbally describing the pictures. She turned to me and said, “Mom, I have to do that part for Eddie.”

I practically burst into tears. I was so proud of her for recognizing the adaptation Eddie needed for the story and for automatically giving him that information. Even though Eddie probably wasn’t really following the story, she was trying to make it meaningful for him. That is a simple point I try to make with everyone in Eddie’s life; adapt activities so they are meaningful. I guess Molly is one gal that I won’t have to teach that to, because she was perceptive enough to pick it up herself.

After she was done reading, she asked if we could all play “band”. She told me that Eddie would play the keyboard, she would play the guitar, and I could play the bongos. Yes, all these instruments are set-up in Eddie’s room, along with some other ones. What can I say, he loves music! Anyway, we all grabbed an instrument and “jammed.” I tried to stay with Eddie’s awesome rhythmic beat and Molly did her own thing and we had a bonafide rock band. What a great way to end the day; a Coleman family jam session. Today rocked!

Trick-or-Treat

About two weeks ago, Eddie was sitting on the couch next to me and randomly spouted “Trick-or-Treat.” Amazed, I ran to the kitchen, found him a piece of candy, and handed it over. As you might expect, this happened four more times in less than two minutes. It seemed Eddie was getting the concept of Halloween. Then, I had to tell him candy was “all done” and as you can imagine, he really didn’t like that answer.

Since then, we have heard him try “trick-or-treat” a few more times, but unless candy quickly appeared in his hand, he gave up the request. Tonight, we were really playing up the whole concept of Halloween and trying to teach Eddie how much fun it was. This required lots of candy placed in his hot little hands, and lots of candy eaten by him. When we finally got all dressed up to head out-of-doors, I’m sure Eddie was wondering what was about to happen, but due to his sugar-high probably didn’t care.

What I quickly realized, is that Halloween resembles most speech therapy sessions with Eddie. If he verbally makes a request, we fulfill it as fast as possible so he sees a connection. This tactic can turn ugly fast on Halloween and also can end in Eddie having quite the stomach ache. He quickly understood that “trick-or-treat” would result in candy. However, he has no patience and demanded that any candy he received be eaten immediately.

Due to his urgent desire for chocolate, he would sit back in the stroller and gobble up his candy within seconds. After two houses, we decided he didn’t need to go to as many doors as his sisters. He was really happy to relax, listen to some music, and breathe in the night air. Of course, when I decided to let him venture up to another home, they handed him a king-sized candy bar. Trying to pry that out of his hands was quite a feat that pretty much ended his night. I refused to let him finish it, and he refused to be happy after I took it.

Once we got home, the group of kids we were trick-or-treating with all pitched in a couple pieces of their candy for a “stash” for Eddie. They weren’t going to miss two pieces and they were happy to share with their buddy. It also made me happy to see this “stash” of chocolate instead of the cheap rejects that could have ended up in Eddie’s pile. In the end, we successfully made it through another holiday, with Eddie participating, and enjoying the finer aspects. In the case of Halloween, that means chocolate.

Eddie is Nice

I have been talking a lot about kids lately and how they perceive and interact with Eddie. It seems when grown-ups are uncomfortable, or thrown off guard by Eddie, other children seem to step right up to the task. Adults often talk around him or misinterpret his behavior, or sometimes even ignore him. Kids won’t be bothered by all that nonsense and simply accept Eddie.

I think adults that are unfamiliar with special needs children struggle with many emotions when it comes to kids like Eddie. They want to interact, but aren’t sure how. They want to talk to him just like any other kid, but don’t know how he’ll react. With Eddie, many questions are left unanswered and conversations are left one-sided. Those of us that are used to it keep on talking anyway and ignore the silence or echolalia coming from our blind, autistic six-year-old. We keep on talking because every once in a while we do get an appropriate response, and that is simply awesome.

The other thing that many adults worry about is offending the parents by not acting “the right way”. I want to tell everybody that there is no “right way.” We piece our relationship with Eddie together day-by-day and expect nothing else from others. Eddie is complicated, and so are the millions of children around the world with special needs. My advice it to talk to him like he’s a kid and let him respond in his own way. He may not answer your questions, but by recognizing him you are showing him affection that he needs, just like everybody else.

I thought about this while I was reliving an interaction I had with one of Eddie’s classmates yesterday. I knew he was in Eddie’s Kindergarten class so I told him I was “Eddie’s mom.” He said, “Really? Eddie is nice.” I had never heard Eddie described as that before. I know that Eddie doesn’t show enough empathy yet or understanding of social interactions to really be “nice,” but this 5-year-old didn’t care. To him, Eddie was “nice.” How cool is that?

In reality, Eddie is definitely nice. It is amazingly “nice” to have him in our family and interacting with him daily is a “nice” addition to everything I do. He also has a “nice” way of making me a better mother and a better teacher. Kids are great for pointing out the not-so-obvious to us adults that must interpret everything in the literal sense. I can’t wait to learn more from the peers in Eddie’s school and I can’t wait for him to be able to cultivate all these wonderful little friendships.

Master Manipulator

From an early age, Eddie figured out ways to get out of activities he simply didn’t want to do, or that were hard for him. It didn’t seem to matter what developmental milestones he wasn’t hitting, he was mastering all the milestones of manipulation. This was especially true when it came to avoidance tactics. Just when we thought we had him all figured out, he’d come up with another strategy.

We first noticed this skill when he was six months old. His physical therapist would come over and work with Eddie for about ten minutes and then Eddie would fall asleep. He literally went limp with his eyes closed. Of course, after trying to wake him without success, his therapist would pack up and say, “See you next week.”

After the third or fourth time of this happening, his therapist left early, and I looked over to see a grin spread across Eddie’s face at the same time the front door closed. What a turkey! He was faking sleep to get her to leave. From that point forward, we continued to keep him moving through his pretend slumber and eventually he would open his eyes and participate. Immediately after he knew we were on to him, he gave up this tactic.

Once Eddie moved to pre-school, he realized his growing size was on his side. When asked to walk alone with a walker, he would simply drop like a sack of potatoes onto the floor. It took months of teaching him to use his walker before he trusted it enough to use it alone. At first, we were able to muscle him off the floor, but as he got bigger, this just wasn’t possible. He still pulls this trick from time-to-time, but we simply wait him out and eventually he is on his feet again.

Also in pre-school, Eddie worked on the tantrum strategy to avoid work. At first, he probably got away with it many times. Once we knew the tantrums were task related we simply waited for him to pull himself together. It wasn’t too long before he realized this wasn’t getting him out of anything, just prolonging the inevitable. We still see tantrums for sensory reasons, but rarely for task avoidance.

This year, as a kindergartner, he has discovered the ultimate strategic action for avoiding unpreferred activities. He snuggles. He crawls right into anyone’s lap that will let him and he hugs, and he grins, and he makes himself so adorable that all work is forgotten. Luckily, they figured this out quickly at school. However, even at school and home, this strategy still works from time to time. I find myself giving in often and then I almost have to slap myself out of it.

Curious Kids

One of the greatest things about Eddie being at a new school this year is the outpouring of curiosity. His school has about 600 kids in grades Kindergarten through 12th grade. It is a small, rural community that may have never had a student with Eddie’s level of visual impairment. Because of this, the kids are so curious about his cane and blindness in general. It is so fun to field questions as we walk through the halls with Eddie.

The first week of school, a student came up to us and asked me if Eddie was blind. He said he had never known a “blind person” before. I said, “Well, now you do. This is Eddie. What’s your name?” I love to introduce Eddie to other kids because it is good for him to learn about the social world around him, and it is great for other kids to know more about him, too. While sharing information about Eddie, I also try to make it seem like blindness isn’t a big deal. Overall, I want these children to know that he is “just a kid”.

Because I am working now, my husband takes Eddie to school and picks him up every day. He said that kids are still asking about Eddie almost daily and that they frequently say “hi” to him. Eddie really has been embraced by these students and it is so fun to see. The student’s attitudes are also helped greatly by the teachers and school staff. They’ve also worked hard to make Eddie feel welcomed and to make him an active part of the school.

On one hand, I hope that as Eddie gets older students continue to ask questions about him daily. On the other hand, I hope they stop asking questions because that might mean he is no longer a novelty but simply one of them. I think as Eddie’s social skills improve this will be the case. In the meantime, until he becomes more verbal, or tries to reach out to his peers, it is up to us to answer for him; to ultimately be his spokesperson.

Because Eddie can’t do it yet, we need to always permit time when questions are asked because it is up to us as his parents to help people get to know him better. He’ll always be changing and growing, which will spur more questions, and Eddie’s “image” will be redefined. However, once those initial questions are asked and answered, and the mystery surrounding his blindness is removed, nobody will be able to keep Eddie at arm’s length. He is simply too loveable…and he does that all by himself.

You Just Do It

A couple weeks ago I was able to attend a two-day event filled with motivational speakers. It was not meant to have anything to do with special-needs kids. However, one of the first speakers was telling her life story and sort of just “threw out” the fact that her son was blind. It really caught my attention because that is exactly how I refer to Eddie. It isn’t something that sits at the front of my mind, and it isn’t something that I feel I’ve “overcome”, it is just a simple fact about my son.

The speaker told of great tragedies she had been through and dealt with. She spoke of the trauma that took her son’s sight, but didn’t even mention it left him blind until she was telling another anecdote about him. She went on to explain that she went back to school because that is what she needed to do for her son. She didn’t expect praise for this; it seemed to her a simple fact of what a mother would do for her child.

I listened to her story and thought about how similar our feelings were in regards to our children and their blindness. I thought about how many times we were given another diagnosis or prognosis and we simply said, “What do we do next?” We moved forward parenting Eddie because we had no other choice but to just do it.

After her presentation, I had a chance to speak with her very briefly. I told her that her story connected with me because I had the same attitude about raising a child who is blind. I said, and she said almost in unison, “you just do it.” There is no complaining, there is no second guessing, and there can be no wishing for something else. These kids are unique and wonderful and we learn how to teach them, encourage them, and take care of them because we are their mothers. Simply put, we just do it.

Tips for Teachers

At the start of this school year, I'm reminded there is a pretty steep learning curve when it comes to understanding visual impairments. Everything that we know about children and how they learn is turned on its head when you apply those same principles to students without 20/20 vision. With that in mind, there are a few quick tips I'd like to throw out there for classroom teachers first experiencing a student with a visual impairment.

1) Forget about incidental learning. A statistic I have quoted many times is that 80-90% of what a typical child learns is visual and is often through incidental learning. They see an older sibling eating with utensils and they think, "Hey! I'm supposed to use a fork." Children without visual clues won't automatically pick that up without being told that everyone eats with utensils, without being shown what utensils are, and without being walked through the process step-by-step. In summary, if you want to teach a student with a visual impairment something, let them get their hands on it. Give them extra time to explore tactually and have first-hand experiences most children only need to view.

2) "HAND-UNDER-HAND." Our first instinct with children who are blind is to grab their hands and manipulate them through an activity we want them to do. Having your hands moved for you is a very invasive tactic, especially for young or multiply impaired students (like my son) that may not understand what you are doing. A very wise friend of mine demonstrated how this feels by doing a lesson with teachers entirely in French, while they were blindfolded, and grabbed their hands to have them complete tasks. Take a moment to imagine that and I'm sure a panic attack will set-in.

"Hand-under-hand" is a more polite way to introduce new things. Allow the students to place their hands on yours while you show them how to do something or explore. It's amazing how fast those little hands will begin to reach out on their own and how quickly they will trust you to teach them new things.

3) Make sure there is braille everywhere. In a classroom with students that are sighted, there are posters, words, and books surrounding them. They see language everywhere. Children with visual impairments don't benefit from these everyday sights. They need to come in contact with braille (large print for some) as much as possible.

If a teacher places braille labels throughout their room, provides access to braille books, and makes sure materials are in braille, the students will begin to realize that there are words everywhere and that reading might be a great skill to have. Braille literacy statistics are frightening and we all know if you can't read, it will be nearly impossible to find a job. As a teacher, you should hope for all your students to become literate and early experiences are the key.

4) Treat them like all the other kids. Students with visual impairments can be intimidating to a teacher with minimal experience in this arena. However, I like to emphasize that they are simply kids, too. My son has his quirks (obviously), but he is just a kid. If he's not paying attention, call him on it. If he's throwing a tantrum, tell him "That's enough." If he does something well or is participating with his peers make sure to say, "Eddie, great job!"

If you want him to feel like part of your class, make sure you treat him like he is in the room. It requires a little more effort because you can't just smile at him or make eye contact. However, the more you use his name or pat him on the back, the other kids will realize he's just like them and that he is one of their peers and not an outcast to be ignored. Some teachers pick this up fast but others may need reminders and polite suggestions.

5) Mainstreaming is important. This is a concept that many teachers are now open to even though that wasn't always the case. However, they may not understand its importance or meaning. Mainstreaming doesn't mean you just allow a child who is blind to sit in your room while you lecture. Just like any other child, you wouldn't expect them to simply "soak up" the knowledge. Often these kids are the quietest and most polite, but that doesn't mean they are learning.

Eddie is an expert at doing nothing. Often, when a child who is blind is sitting quietly in your classroom while you speak, they are simply doing nothing. They are not being bothered and they are lovin' it. Having them in your room requires work and that phrase some teachers dread, differential learning. You will have to adapt assignments and provide more hands-on activities and allow them to use their "loud" Brailler in your room, but that is just how they learn.

Providing them equal learning opportunities isn't the only thing accomplished by mainstreaming. Remember when I mentioned how much is learned visually; this includes social experiences. Students with visual impairments need to be with their peers to learn about friendships, to learn about appropriate social behavior, and maybe even to learn how to raise their hand. Eddie lives in a world that revolves around him, and patience is a virtue he doesn't have because people love to cater to his every need. When he is in a classroom with twenty other students, the world suddenly doesn't move on his command and that is an extremely important thing to learn.

I realize this blog is more like an article and much longer than normal, but these are things I find SO important and universal no matter who the kid is and what their academic level might be. I invite any of you that may read this to comment and add more "tips for teachers." Our children are such a small and special group of kids that we need to share advice as much as possible to set the bar high and continue to raise our expectations for them and for their teachers.

First Day of School

Last week, Eddie started Kindergarten at a new school, in a new town, with new teachers, new hours, and new classmates. That is way too much “new” for Eddie. His Dad and I dropped him off in his room and we left him completely overstimulated sitting at a table. He was covering his ears and making a sound I can only describe as whimpering. It isn’t quite crying, and a little like whining, but basically he was letting us know he was upset.

This may cause a parent of a typical Kindergartner to linger and make sure their child is OK and that they aren’t going to be emotionally scarred from being abandoned at school. This was not the case for us. Eddie had visited the school previously and had been talked to at length about going to school so this wasn’t like we were dropping him off “cold turkey.”

We made sure he had all he needed, gave his teacher some last minute tips, and then got on out of there. Honestly, hovering would not have improved the situation. With everything being so new to Eddie, we expected this behavior to continue for days and we certainly couldn’t set up camp at school.

As expected, he had a couple rough days last week, but by the afternoon on Friday he was beginning to explore his surroundings. This is usually a good sign. It showed us he had realized that he wasn’t going anywhere and should make himself at home. This is the first year he is attending school full-time so the faster he gets used to the idea the better the year will be for him.

It is pretty hard to have a child like Eddie that you can’t ask, “How was school today?” “How was lunch?” “Did you have fun at recess?” His behavior is our only indicator of how things are going. Sadly, that can be so skewed that it is often unreliable. He could love his teacher and his new school, but if there is a toy that makes a sound he can’t stand he’ll cry all day long. If there is a student whose voice is hard for him to tolerate, there will be repeated tantrums. His own parents have trouble reading his signals, so it must be really hard for the staff at his new school.

There is a steep learning curve when it comes to Eddie and the only choice is to keep climbing up it. Every day Eddie will try to communicate multiple messages and every day his teachers will work on deciphering them. The best part about teaching Eddie is having those moments when you understand each other completely. I don’t get those constantly because I’ve learned his communication methods right along with him. However, his new teachers will get to experience those breakthroughs and triumphs daily. For that, I am totally jealous.

...Has Cerebral Palsy

When I began writing this blog there was so much about Eddie we didn’t know that it seemed so appropriate to title it “Raising a Child Who is Blind and…”. With him, there is a surprise lurking around every corner. I had mentioned previously that he had an orthopedic impairment that we were going to have looked into; that research turned into a new label “cerebral palsy.”

This “label” was suggested by a specialist who spent a grand total of twenty-five minutes with Eddie. Isn’t it amazing how one person, playing such a small role, can make such a large impact? My husband, who actually took Eddie to the appointment, broke the news to me. The first thing I did was mentally flash forward to Eddie as an adult and what that might look like. I saw Eddie in his twenties, in a worst case scenario vision. That lasted five seconds, and then I was luckily transported back to reality.

Reality is that Eddie is the same kid he was before a new diagnosis was thrown in the mix. Honestly, being somewhat familiar with Cerebral Palsy, this label doesn’t give us any new information. The characteristics indicated by this are ones we already knew about Eddie. This is all wrapped around the same diagnosis he’s had all his life. So, he has a new label… but nothing has changed. I mean that. He is the same kid no matter what is in his medical file and maybe it will be a piece of information we can use for better services, or proper methods, but it doesn’t change Eddie.

This peace of mind comes from years of having a child full of surprises. I take it as it comes and sort out the details later. Do I like the fact that someone diagnosed him with minimal information and minimal time with him? Absolutely not. However, if after discussing this with doctors that have known him longer and they concur, I’m not going to wallow in self-pity.

His Dad and I are going to work harder with Eddie to overcome possible obstacles to his independence, but we’re not going to let this label be an excuse. We’re going to push Eddie just as hard tomorrow as we did today, because doing anything else would be a disservice to him. Now it’s time to move forward to the “getting-things-done” phase. Eddie needs a good physical therapist, and since we’ve just moved, my job will be to find him one. Here we go down yet another path…one unsteady step at a time.

BIG Changes

The last couple weeks have been a little hectic in my life which is why there has not been much posting. We decided to move our family because I was offered an exciting position as a teacher of the visually impaired. Taking the job required moving to another state and uprooting our family, which is never an easy choice to make. Making such a drastic change is even harder when you have a child with special needs.

To move Eddie required verifying insurance needs months in advance and determining new services and new people to provide those services. He had a phenomenal team for six years that loved him and I had to wonder if we would find that again. Even though we have only been moved a week, I’ve been met with enthusiasm from his new school and growing support from a small community. Being generally optimistic, I expected good things, but it is always a relief when it happens.

Moving Eddie takes so much thought, that I have to remind myself how hard it is for my oldest as well. She is leaving behind friends and a school she loved and even though she won’t admit it, I believe she is terrified. I just expect her to adapt and make friends quickly, which she probably will, but I can’t forget to be there for her, too. I realize I can’t always spread my time equally among my children because Eddie requires so much, but this should not be obvious to my kids.

Needless to say, we are in a state of disarray at the Coleman residence. I’m sure this chaos will breed many new posts about change and adaptation. I used to love big changes but not-so-much anymore. I used to feel like a “free-spirit”, but that has changed some with parenthood. Routines and stability now make me feel safe and big changes are scary. Obviously, they are scary because they affect my kids now, too, and not just myself. Eddie is a stickler for routine and I’m shaking up his world. I think it will be good for him, though, because life is all about change. This may be his first major “life lesson”. You never know, I might even learn something, too.

Another Waiting Room

This afternoon I found myself in another waiting room with my dear son, Eddie. We traveled hundreds of miles to see his ophthalmologist today and his endocrinologist tomorrow. This is a fairly routine trip for us, no new concerns, but one that must be repeated fairly often. As we sat in the waiting room, I realized I was not modeling very good parenting as a mother of a special needs child.

I really try to hold Eddie accountable for his behavior and squeeze in as much incidental learning as I can when we’re in public. I try to stop any repetitive behavior that wouldn’t be considered “appropriate” and I ask him to use his “indoor voice” when he insists on singing as loud as he can. I also try to explain everything he comes into contact with and encourage him to use his cane properly.

Today, I did very few of those things. We had been in the car for hours before we arrived at the doctor. My main goal was to leave him alone as much as possible so I didn’t push him over the edge. If I “nagged” too much or insisted on talking to him nonstop he would have been completely over-stimulated before he ever saw the doctor.

I knew there was a high risk for a complete meltdown when we walked in the door. We were checking in at the counter and Eddie was standing right next to me. He started complaining about the wait, because he has zero patience for anything that isn’t his idea, and then he leaned over to bite me. I jumped about a foot in the air and told him not to bite because it really hurts. The lady sitting behind us said to her companion, “Something is wrong with that kid.”

I’m not sure exactly how she meant it but something was wrong with him. He had been stuck in a car for a long time and was now being asked to be quiet and patient. Any child in his situation would have “something wrong” with them. I certainly didn’t take it personally; meaning the comment, the bite I took sort of personally.

Anyway, the appointment went great and Eddie behaved extremely well for all he was asked to do today. Even though I wasn’t being the educating mother, I was being understanding, and that was what he needed. On a funny note, when we left the doctor Eddie stopped and said, “Thank you for the birthday party.” I’m still not quite sure where that came from, but we all had a really good laugh about it. If Eddie thinks the doctor’s office is a party, I really need to try harder for his next birthday.

Bad Way to Start the Day

Already today, and it isn’t even two o’clock, I am totally wiped out. I knew this morning would be busy because we had a full schedule, but why did the first appointment have to be so exhausting? I had to take all three children into the dentist because Eddie and Molly both needed about fifteen minutes or less of attention. Molly went in first for a few sealants and I was in the waiting room with CC and Eddie. I knew that having them in such close quarters was risky, but if I’d known how risky, I’d have desperately tried to find a sitter for CC.

Every peep uttered by my youngest had Eddie possessed by demons. He threw tantrum after tantrum which culminated in hitting himself and trying to pinch me multiple times. CC would wander to play with a toy for a bit and we would have peace, and then she would simply sit by us and utter a syllable and all peace was lost. I tried to have them “hug it out”, which worked the first few hugs, but then Eddie wanted none of that either. He would smile and laugh at first, then push her away, and then just start screaming.

I can’t even imagine what we looked like to all the other families in the waiting room. I had zero control over the situation. All I could do was pin Eddie’s arms to his sides to prevent him from hurting himself, me, or his sister. I knew I couldn't yell at CC to stop talking or to stop hugging her brother, but I desperately wanted to do just that. In the midst of the hysteria, a hygienist came out to talk to me and I was holding back a flood of tears. Times like this don’t always get to me, but today it certainly did.

It really makes me sad that Eddie struggles so much with CC and I desperately want to find a way for our family to be together without watching Eddie completely unravel. I understand that he can’t help it, but it doesn’t make it easier. Once he was in the dentist chair for his post-work exam, he was happy and laughing and totally over the waiting room fiasco. This kid can swing a mood like nothing I’ve ever seen.

Thankfully, our busy morning is over, and now I plan on sitting down and reading a book. Eddie is at a lake with an amazing summer program for special needs children and I am thankful for this time. I know he is having a lot of fun and that it’s considered “respite” for me, but it is equally “respite” for him. I wish I could hit a reset button for this morning, but it looks like I’ll just have to hang in there until bedtime. There is always tomorrow where I can hope for a better start to the day.

Campout

Yesterday, I was accused by my husband of planning family events just so I’d have something to blog about. Even though that isn’t true, I can’t help but admit that any type of family time can usually be posted about because it is always an experience worth sharing. This weekend was no different as we decided to take our three kids camping for the first time in six years. We loved to camp pre-children and were anxiously awaiting the day when we could put our tent up again and give it a try.

The biggest obstacle over the past few years was consistently having a child that wasn’t independently mobile on their feet. Nothing against crawling children, but they aren’t the best campers and usually end up eating way too many things off the forest floor. Eddie still isn’t totally independent, but he’d rather sit in a camp chair and relax then explore the ground on his own. So, with our youngest turning three this weekend and nothing on the calendar, we headed into the great outdoors.

Before I discuss the challenges, let me first say there were a few great moments we had as a family that made the trip a success. We went on a 6-mile family bike ride to the nearest town and enjoyed ice cream and a used bookstore. We also had a great time by the river swimming, splashing, and playing in the mud. We had the opportunity to see multiple deer and eagles and simply enjoyed sitting and eating by the campfire. The girls also really enjoyed fishing and Eddie spent that time getting a “break” from his siblings.

That brings us to the first obstacle of camping with Eddie. He still struggles with his younger sister and has a tantrum almost every time she speaks at all. We’ve discovered by having her give him a hug he seems to relax a little, but he still needs time apart which we allow him when he asks for a “break”. Finding alone time on a campsite is pretty tricky. We either had to take the girls and do something or put Eddie in the van for a bit.

It may sound mean to put him in a vehicle, but it was pretty hot this weekend and Eddie doesn’t regulate his temperature very well. So, by putting him in the van with the AC on and his favorite music for 15 – 20 minutes, we were adjusting his mood for the next few hours and keeping him from getting a fever.

The second biggest obstacle was Eddie’s irregular sleep patterns. He frequently wakes up before 4:00 in the morning and we weren’t sure what we’d do if that happened in a tent with all five of us sleeping together. Sadly, the first night, Eddie was up at 2:50 am. I woke up to Eddie trying to crawl over the other four of us and giggling the whole time. I managed to corral him for the next two hours on his own sleeping mat, but then we had to move to the car where he listened to music and I tried to sleep a little bit more.

Meanwhile, in the tent, the airbed had deflated and James and the girls weren’t sleeping either. Thank goodness the next night we all managed to stay in the tent until seven, even if it wasn’t the best sleep we’d ever had. We actually awoke to thunder, which Eddie thought was hysterical.

Overall, the weekend had its ups and downs, but we are definitely going to try again. We came up with some ideas that will make the next trip better and it will probably be a never-ending process of trying and then adjusting. We are definitely becoming skilled problem-solvers thanks to Eddie. Planning family activities that include Eddie are not always easy, but they are almost always worth it.

King Edward’s Coronation

When we named Eddie, we realized that “Edward George” had a very English royalty ring to it. In fact, many close friends referred to him as “King Edward” for the first few months of his chaotic life. However, it wasn’t until Friday that he was officially crowned. Actually he was crowned four times, on four different teeth.

Dental work with a special needs child is turning out to be an unexpected complication in a life that is never ordinary. With small kids, usually a trip to the dentist includes a quick cleaning with possibly a filling that provides little trauma and then a new toothbrush and a token prize on the way out the door. Of course, not with Eddie; why would anything be so simple? He has never sat still for x-rays, so the cavity we knew he had was due to its sheer size, but I had no idea he needed so much dental attention.

Friday, we checked into our local hospital for some general anesthesia and at most an hour of dental work. I thought, in at eight-thirty and out by noon. Why was I so naïve? Has that ever happened in a hospital? I think the rule is you must stay at least eight hours so you can get your money’s worth. We arrived on time, his dentist promptly visited with me, and then we didn’t see another doctor for three more hours.

Here I am sitting in a hospital bed with Eddie, who hasn’t eaten in over 12 hours, hasn’t had water in over five hours, and who is bored out of his mind. For the most part, his demeanor was superb. He was enjoying quality time with mom, and inside I wanted to scream out for someone to get the ball rolling. In fact, I’d say my behavior was worse than his. Yes, I caught myself excessively checking the clock, looking directly at nurses, and even pacing a bit. Finally, the anesthesiologist came out to talk to me.

My goal was to matter-of-factly tell him about Eddie, with the smallest amount of niceness, to get things moving. I felt like our time had been wasted and that Eddie was being ignored. However, after spouting facts about Eddie and his meds, that doctor had the nerve to compliment me. He said I was an inspiration to him because I was such a good advocate, knew my son so well, and that I seemed to be well adjusted to Eddie and the conditions he was born with. He said that I had “made his day” and that I was an “inspiration to all mothers”.

Huh. That wasn’t what I expected. Ok, I guess three hours isn’t too long to wait for somebody to make my day. I often go through life doing things for Eddie because I think it is right; because I feel it is my job as his mom. Rarely does a stranger recognize that I put a lot of time and effort into it. Even though the day ended with Eddie getting four crowns, three fillings, and a tooth pulled (medications wreaking havoc with teeth) it wasn’t the worst day ever. Eddie slept the next 18 hours and happily woke up pain-free; and I got a nice big pat on the back. So, thank you Dr. Anesthesiologist, for recognizing me, and more importantly, for taking such good care of my son.

What Would I Be Doing?

As I continue working my way through a graduate program to become a teacher of the visually impaired I often ask, “What would I be doing if it weren’t for Eddie?” Here I am pursuing a career I didn’t even know existed until Eddie was born. When I received a secondary teaching certificate nine years ago, there was no way I would have ever gone into special education. I thought I didn’t have enough patience, enough experience, or enough understanding of disabilities to work with children in special education regularly.

Here I am, three kids and a few years later, heavily involved in this field. What I think happened, is that Eddie took away my “fear factor.” I didn’t know any children with disabilities, had never interacted with any, and really didn’t understand that they are just kids. Isn’t that the truth? They are just kids and it takes really knowing one to grasp that knowledge. Now I’m so excited to spend my days working with children that have become so endearing to me.

On top of my schooling, I also find myself blogging to people like me for Family Connect (which I feel SO lucky to be doing) and I am often given opportunities to attend events that constantly keep me connected to the field of educating those with visual impairments. Probably 90% of my time spent not with my children is spent thinking about or learning more about visual impairments and blindness. Really, what would I be doing without Eddie?

I think I would ultimately be unfulfilled. I have developed such a fondness for this field, and for the people I’ve met through it, that I cannot imagine being without it. From experience, I can say that parents of children with visual impairments are so blessed. They are surrounded by a population of highly educated professionals that are passionate about their children and really care about improving their futures.

For those of you that haven’t had an opportunity to meet any of the leaders in the field of visual impairments; know that you are in good hands. I find comfort in the fact that even if I hadn’t been pursuing this education, many others spend their time looking out for Eddie. They don’t know him personally, and they often work behind the scenes, but their continuous research and support will assure that all students with visual impairments are not overlooked and that they deserve the same opportunities as all children.

Fun in the Sun

The kids and I are staying at my mom’s this weekend and we were able to enjoy some great sunshine yesterday. Usually on hot days, Eddie tends to stay indoors because he doesn’t regulate his temperature very well. He gets hot pretty fast; not just his temperature, but also his attitude. Therefore, we try to keep Eddie as cool as possible. So, per our normal routine, the girls, Grandma, and I were playing outside in the sun and Eddie was happily playing alone in the nice cool basement.

After a little time outside, and realizing how much fun we were having, I decided to risk the nice afternoon and have Eddie join us. I say “risk” because everybody was perfectly happy, and bringing Eddie into the heat with his loud sisters could spur a tantrum that would drive us all indoors for the rest of the day. Luckily, with some tactical planning and a bit of luck, all went well.

My mom had just purchased a slip-n-slide for the kids and the girls were loving it. I wanted to give Eddie the opportunity to love it as well. I brought Eddie outside and walked him down the length of the plastic, so he could determine its size, and then sat him in a pool of water that was forming at the end. After a brief moment of whining, he got right to splashing and laughing just like he always does in the bathtub. Once he was comfortable, it was time for his sisters to join in.

The oldest, Molly, took a running slide right towards him that created a tidal wave, which Eddie was caught up in. He was totally startled and then busted out laughing. Eddie quickly learned that when he heard Molly hit the start of the slide, he had about 2-3 seconds before the water would hit him. It was so funny watching him brace for impact and then laugh when Molly eventually slid right into him. He even let the youngest, CC, get up close and personal. She wasn’t a fan of sliding, so she slowly crawled from the start of the slide all the way to Eddie and then simply said, “Hi, Eddie.”

What a great afternoon! We were all able to participate outside in the sun and everyone had a great time. I think this lasted for over two hours before all the children were shivering and a small pond was forming in the backyard. I’m so glad I brought Eddie outside to join us. Sometimes I limit our family time because I don’t want to upset anyone, but by doing so I only limit Eddie’s opportunities and my expectations for him. I’m looking forward to a couple more months of summer and more opportunities for family fun in the sun!

New Perspective

I have been thinking a lot lately about how Eddie has changed my view of the world. Many things that used to be very important to me, or would cause me to stress out, seem so insignificant. The daily grind of life now seems like something I need to keep doing, but not the purpose of my life. If I spill coffee on myself on my way to school, oh well, I’ll wash it when I get home. If a favorite item is misplaced, I think to myself I’ll either find it later or I won’t.

I’ve wondered why being Eddie’s mother has affected me in such a way? Why is it that because of him I don’t get easily worked up? What I’ve decided is that I cannot change the fact that Eddie was born with a disability and that is simply why my perspective has changed. Even though I wouldn’t change Eddie if I could, the fact is I have no choice. This may sound confusing, but the reason Eddie and his disabilities have changed me is because I can’t change them.

Every other problem seems to be small because it can be changed, or fixed, or because I did it to myself. I spent a lot of time when we learned about Eddie feeling sad that he would always carry his diagnosis. During that time, I realized how many things we can make better for ourselves if we choose to do it. We can’t change Eddie’s disabilities and that makes everything that can be changed seem like something to be done, not an insurmountable problem.

I also have come to realize that there are other things that happen to people that can’t be changed. Having a child with a disability is just one example, but so is the loss of a loved one, or suffering a personal disability. These things can change people and their perspectives forever and I’m not sure anyone can really appreciate that until they are faced with it.

Overall, I feel we are blessed that Eddie taught us how to let all the little things go and embrace the meaningful parts of life. All the time I used to spend worrying, can now be spent happily enjoying time with my family and appreciating all the great things that we have. I’m sure this is a realization many parents like me come to when they think about it. I feel that Eddie really gave me a tremendous gift when he was born; the gift of a new perspective.

Just Can't Get Away

I am currently spending some time away from my family working on coursework for my graduate degree. I’m staying with friends while my children are enjoying quality time with dad and their grandmas. The time I am away is significant enough that I am able to catch up on sleep, work on tasks I haven’t been able to fit in, and enjoy a tiny bit of leisure reading. However, as any parent would agree, there really isn’t such a thing as total time away.

I have gotten good at letting things go a bit and allowing my husband to be in charge. Realizing that I am hundreds of miles away, I have decided not to micro-manage what is happening at home. As I’ve said before, I am a bit controlling, and I have to mentally make a decision that I will not try to run things from afar. James is an exceptional dad, which makes the decision easy. Even though I relinquish my crown, as I imagine it, I am still constantly thinking about the kids and receiving calls on their behalf.

Yesterday, during my first class of summer quarter, I received a call from Eddie’s dentist and another from his pharmacy. During my breaks, I was quickly returning those calls. This required me to order prescriptions, dig up doctor information from my memory, and go over dental symptoms that I have not witnessed for a couple of days.

As you can see, I really can’t just get away. I can’t slip into college life and leave my parenting behind. Luckily, I would never hope or intend to do such a thing. I feel sort of grateful that I am still needed and relied upon even if I can’t be physically with my children.

As I move forward in my classes, trying to be fully engaged in “student” mode, I am just going to be grateful for the extra sleep. If I have to return multiple calls and tend to other miscellaneous tasks in between assignments, I am happy to do it. My reward at the end of the day will be a night of uninterrupted sleep and unexpected phone calls from the kids. Nothing sounds better after a day of hard work then, “I miss you, Mommy.”

Exhilaration and Exhaustion

Well, we are at the end of week two of potty training and Eddie is doing amazingly well. We are so excited about how fast he caught on and the support we’ve had through this process. In the past week, he has only had one accident and that was due to our negligence.

We take him to the bathroom every 1 ½ - 2 hours and he knows that is when he should do his business. However, sometimes we get distracted and forget to take him. We are hoping our absence of mind may eventually result in him deciding to ask to use the bathroom. It would be nice to see a slip-up on our part turn into something great like self-initiation.

Again we expected Eddie to be successful and he has been. We now find ourselves asking, “Should we have pursued this sooner?” and “What else can Eddie do?” I’m not going to pretend that this process has been easy, but it has been well worth it. We are exhausted from the overall routine of this endeavor and from this new task at hand.

Honestly, it simply is easier to have a child in diapers. Not only are we complicating Eddie’s life, but also our own, by removing diapers. We are adding multiple trips to the bathroom in our daily routine that simply can’t be put off. I really believe that is why we have waited so long to pursue the task. It has me wondering what type of “boot camp” we can embark on next. Eddie’s “to-do” list is quite long but tackling it one obstacle at a time is not so overwhelming.

So, even with the total exhaustion that comes with Eddie waking up bright and early and now taking him to the bathroom instead of continuing to sleep, we are truly exhilarated. Eddie has impressed us and we feel invigorated with another job well done by him. Successes like these are what motivate us to keep teaching him and helping him grow towards independence.

Operation Potty

This week we have embarked on potty training boot camp for Eddie. Once again we acknowledge how different teaching Eddie is then teaching our other children. For our oldest, she woke up one day at 2 ½ and decided she would no longer wear diapers. From that moment forward she was potty trained and has only had a handful of accidents since. Eddie, at 6, was showing absolutely no interest in using the bathroom. This is also true for our almost 3-yr-old, but that is another story.

This spring, we decided to devise a plan for potty training Eddie. We had to wait for school to be out to fully take it on. What it has come down to is five adults, a kitchen timer, twenty pairs of underwear, jelly bean reinforcers, endless cleaning supplies, paper towels, wipes, and a multiple page behavior plan. I really had no idea that such potty training existed. It truly is a full blown mission.

We started on Monday and have had multiple successes. He isn’t ready to venture out into the world, but every day we’ve seen progress. I’ve had people suggest that maybe Eddie wasn’t ready or they asked if I actually thought he could do it. I constantly told them, yes, he could. It is all about expectations. If we didn’t expect him to ever be out of diapers, he never would be. We try to set our expectations high, and most of the time Eddie can meet them.

I know it is easier to set low expectations because you are never disappointed. But true success really comes from setting the bar high and meeting those expectations others think are out of reach. So, here we are fully invested in staying home with Eddie until he can finally be potty trained. It might take many days and lots of supplies, but the end result is going to be SO worth it.

Only Sometimes

This past weekend my family (and two grandmas) had the opportunity to attend the annual “Family Learning Weekend” at our state’s school for the blind. This is an event that we have missed once since Eddie was diagnosed and that was only because he was in an intense therapeutic program at the time. When we get any invitation to learn more about Eddie and talk with other parents like us, we just can’t turn it down. I’m definitely a “support junkie”.

This year, we were again asked to be on a “parent panel”. As I believe I’ve mentioned before, multiple sets of parents sit in front of the group and share stories about their children with visual impairments. I never turn this opportunity down because I hope to help someone in the audience through sharing. I always learn from the other parents, and I hope someone can learn from us as well.

Upon returning from our trip, my husband and I reflected about the whole weekend and especially the “parent panel”. We thought about what we mentioned, but also all the things we left out. I know it is supposed to be an honest portrayal of what we’ve worked through, but it is also supposed to be positive. The audience included many new parents to this “club” we are all members of, but never thought we would be. It is hard to look into their faces and explain that it doesn’t always get easier.

When Eddie was a baby, we longed for him to grow older so times would get better because we’d know more. What we’ve found, is that it does get harder. Every year, month, or even day comes with new expectations and obstacles we must face. I’m not saying that every battle isn’t worth it, but some days are truly a battle. The kind of scrimmage that leaves you emotionally drained and wondering where you’ll find the courage to fight again tomorrow. Those are the days that are hardest to share and that don’t provide the boost many new parents need and seek from the “parent panel”.

Truthfully, discouraging others isn't the only reason we don't share the hardest things. We also don’t share them because we can’t. We can’t admit to ourselves and others that we’re not always at the top of our game. We can’t admit that we don’t always find our situation a blessing because, on occasion, it is too hard to embrace. As I’m typing with a few tears in my eyes, I’m still having trouble openly stating that I can’t always hang my head high and hope that things work out. Sometimes all I can do is cry…a lot.

Because we couldn’t say it “live”, I am saying it now. I have said before that raising a special needs child isn’t easy, and I’m saying it again. Frankly, I’m saying it is hard. We need help from those close to us and we need support from all the other parents like us. It is hard…and it is sad…but thank goodness not all the time. Only sometimes. That is the real truth that I hold on to when I can’t get a grip. Yes, it is hard, but only sometimes. 98% of the time, parenting is fascinating and worth every bit of energy and love we put into it. However, I will continue to admit for my own mental health that some days I can’t win…but only sometimes.

Another Sleepless Night

Children with visual impairments often fall into crazy sleep patterns, which is pretty much common knowledge. After having Eddie, I learned that those with Optic Nerve Hypoplasia seem to be infamous for their sleep habits. The amount of sleep he requires is sometimes unsettling. I’ve seen him sleep for one hour and then be up for twenty-four. I can say I’ve even seen this more than once.

Needless to say, Eddie is not allowed to nap. When any napping occurs, his entire sleep schedule is thrown out of sync. It is bad enough that he often gets up around 4:00, but to have him up all night is usually not a treat. Unfortunately, this happened the night before last. I will admit…it all started with a nap.

Eddie woke up at 3:00 on Tuesday morning. When Eddie gets up, he usually spends time exploring the house and playing in his play room. He doesn’t require us to be up with him, but I don’t really entirely go back to sleep either. After opening his bedroom door, changing his diaper, and giving him his first medication of the day, I go back to bed; at least my eyes are closed.

Well, after getting up at 3:00 Tuesday, he fell asleep in the afternoon from 2:00 – 4:00. We woke him up for dinner and some playtime and then he went back to bed at 8:00. Hoping to see him in the morning, we dozed off just before 11:00. Sure enough, at 12:00…yes, midnight…Eddie was knocking on his door hoping to be let out. I looked at the clock and sadly realized I only had one hour of real sleep.

So, Eddie was up, and I was sort-of asleep with one ear open. I’m sure many parents can relate to the fact that I wake up with every loud noise, sudden cry, or loud song he sings. I’m still on alert even though I should be sleeping. By 9:00 Wednesday morning, I was totally exhausted and we were just starting our day. Eddie powered through until noon and then napped until 4:00. I woke him up and kept him up until 10:00 and he finally got back on schedule waking at 6:00 this morning.

It amazes me that due to one earlier than normal morning and a brief nap, it takes 48 hours to get back on track. Eddie seems to be “good to go” but I’m still chugging coffee. He is now six and it has been at least that long since I’ve had regular sleep habits. On top of it all, I decided to phase out the pacifier with his younger sister this week. I figured if I wasn’t going to sleep, I might as well accomplish something. Now, please excuse me while I make another pot of coffee.

The End of an Era

Stating that a child’s graduation from pre-school is the “End of an Era” may sound a bit dramatic, but for me that phrase seems very accurate. On Thursday, Eddie had his final day in a pre-school program he has been attending for three years. It was a very emotional day for me and for all of the pre-school staff.

I remembered back to his first IEP meeting to set-up this program and how nervous I was about everything. Would he get the services he needed? Would they provide braille and O&M? Would he like pre-school? And most importantly, would they take care of my son not just out of duty but out of love? All of the answers turned out to be yes; even the last one, which was the most important.

The staff at this program easily loved my son; my son who can be highly frustrating and knows how to go from giggling to raging in under five seconds. I always knew he was adorable, but I used to worry that people couldn’t see through the behavior to find the adorable. The group of women that have taught Eddie for three years proved that my son is not only capable of being loved, but that he is quite easily loved.

So, I find myself again cycling through the grief process. I’m mourning the loss of his pre-school, the loss of the amazing staff, and the loss of the comfort zone we’ve lived in for three years. It feels right to shed some tears for something that was such a blessing for us. However, as I weep through the end of this “era” I am also slowly preparing both of us for new school days ahead.

Now, I have to confront a word that many parents hate, but especially parents of special needs kids, and that is “transition”. For me it is so hard to find normalcy in our life with Eddie and for three years we had that. Now everything changes as we enter the realm of Kindergarten.

Eddie and I both have to adjust to a new routine, new teachers, longer school days, and tougher goals. I feel like I am enlisting in some specialized boot camp to begin late August. While pulling on our boots, his Dad and I will also pack high hopes for the staff and high expectations for our son. If we can keep those goals in mind, I know that instead of a battle we’ll be preparing a treaty that could see us through many positive life-changing years to come.

Fun, Games, and Minor Back Pains

For the past few years, Eddie has been invited to attend an event called the “VI Games” at our state’s school for the blind. At this annual event, activities are planned for children with visual impairments from the ages of 3 to 21. Kids are broken up by age group, and then participate in multiple events including gymnastics, swimming, bowling, and track and field.

In the past, when the invitation arrived I always declined to go. I thought that because Eddie wasn’t walking independently yet, and because he may not fully understand the event, it would be easier to stay home. I imagined all the other children fully participating and enjoying themselves and thought it might be hard for me to get in the spirit while struggling to physically assist Eddie through the events.

This year, with encouragement from the school, I took Eddie to the games. I have to say that overall it was a great experience. Admittedly, we did get off to a rocky start. Eddie wasn’t impressed with some music being played and the loud applause in the gymnasium was a bit much. The first few events I had to help him participate while he was also covering his ears and intermittently crying.

Even though I was fighting back a few tears because he was struggling with the noise, Eddie ended up grinning and enjoying the movement and even the attention. I wasn’t sure if I’d be able to stand up straight at the end of the day, but his smile was making it worth all the effort. Hysterically, a younger child followed me around all day telling me to, “Leave him alone!” I suppose it may have looked like I was torturing him more than helping him.

Once we got into the swing of the day, we were both having fun. I had to approach this with a good attitude and the knowledge that I would be fully participating as well. Giving myself a pep talk before the day began really helped me to not compare him to others, but to enjoy the abilities he does have. I also decided that my number one goal would be his enjoyment, and some of my “pushing” had to be set aside. This day I would simply be his mom.

I am so glad that I decided to give it a shot. When Eddie received his ribbons and award, the crowd cheered his name, and I could tell that he gained a lot from that day. Even though it wasn’t all easy, he was able to participate with his peers in multiple games and take away the thought that he, too, can get out there and have a good time. Personally, I was able to set emotions aside and be a part of this great community. I even have the minor back pains to prove it.

Serendipity

Last week lightning struck and I happened to be in the right place at the right time. My family was out to dinner and Eddie drew a little bit of attention as he walked in with his white cane. We were quickly approached by a man not much older than me who was dining with his parents.

He introduced himself and his mother and immediately I was aware that he happened to be blind. He said his parents pointed out that our son had a cane and he wanted to meet us. I was so grateful that he came forward because I don’t know that I would have been brave enough to approach him.

After brief introductions, we quickly swapped e-mails. A few days later, I received a message that they wanted to get together. I was invited to his home because he and his mom wanted to share their stories with me and were very interested in Eddie. Of course, this was an offer I would not refuse. Being in training to become a teacher of the visually impaired, I spend a lot of time studying methods and best practices, but now I was going to get a chance to ask the experts.

While visiting, I learned about his experiences in school and also in college. He willingly discussed his job and gave me a tour of his home, which was in a great neighborhood. Because I am not completely new to visual impairments, his success alone was not amazing to me. This was an intelligent, successful adult. Of course he would have a job, a home, a great family, and multiple interests.

What I loved about visiting with him was discovering his methods for organization, thoughts on technology for those who are blind, and firsthand knowledge of the life he has led. I am looking forward to having him over to spend time with Eddie, and he stated he’d love to bring some stories to read the kids because he has a passion for writing. I’m sure they will love it.

I am so grateful for this opportunity that I simply had to share. I think interactions with adults that have visual impairments is extremely important for parents that are guiding their own children down the same path. Also, learning from their parents is a gift because they have successfully done a job many of us have only started. The pool of knowledge is infinite and so valuable.

I’d like to suggest that all parents who have an amazing child at any age that they’d like to share should definitely do it! Every one of us is proud of our children for multiple reasons and we should be. Each and every success is made with a lot of work and we can’t let that knowledge dissipate without passing it on.

Serendipity will not always bring us together, but we can seek out other parents like us. I try to reach out to those that have just learned about their child’s visual impairment and I implore others to do the same. We all know this whole process is easier and less intimidating with backup. I admit that I need support from others and I truly find that most often when I offer support as well.

Annuals and Anxiety

Recently, Eddie had his annual well-child check-up with his pediatrician. This is the only medical appointment that sneaks up on me every year. Eddie has to see a specialized physician every three months so I never really feel like he is short on doctor visits. I understand that checking in with the pediatrician is important, but it always brings up old feelings and sometimes new issues.

The thing that I have always hated most about these annual check-ups is the ritual of running through developmental milestones. Since the time Eddie was nine months old he has missed virtually everything on the list. His first doctor insisted on going through them every time no matter what. I’m sure there could have been liability issues if he skipped it, but after saying “no, he doesn’t/ can’t do that” two dozen times I could never help but feel beaten and depressed.

Eddie has had his current doctor for two years and he also has gone through the milestones. At this latest appointment, I was met with a happy surprise. He brought out the 6-yr-old fact sheet, looked it over, and stated, “This probably isn’t relevant.” Thank you. I was prepared for the onslaught, but did not have to go through it. I was able to laugh over some of the safety concerns for 6-yr-olds and how they’d apply to Eddie. A moment that often has me in tears had me grinning. All I can do is embrace Eddie for who he is and not get wrapped up in who he isn’t.

The second dreaded part of the exam came up next, “Do you have any concerns?” If you have a child like Eddie, you understand the weight of this question. If I bring up something new, I bring upon Eddie more testing and appointments and I bring upon myself more stress. If I don’t bring up a concern, I am left questioning my judgment and will probably call his doctor next week anyway.

So, I opened my mouth and expressed our worries about Eddie’s foot and hip structure and his inability to walk independently. He has been in physical therapy for 5 ½ years and wears foot orthotics but his gait is still terrible and he won’t walk alone. After a quick exam, we decided to move forward with x-rays, orthopedic consults, and a trip to our nearest Shriner’s Hospital. This is what I knew would happen but really I’m surprised it wasn’t addressed sooner.

I think with kids like Eddie, there are so many caretakers, that crucial items are easily overlooked. All the doctors on a child’s “team” often assume another doctor is addressing an issue when they aren’t. Parents feel like the “team members” will say something if they think there is a problem, so if it isn’t mentioned, great. It is obvious how things slip through the cracks.

I was recently asked who managed all of Eddie’s care and which doctor would be the best source of global information for my son. I confidently stated, “That would be me.” If there is a problem, it is up to me and Eddie’s dad to have it addressed. Eddie counts on us to take care of him and there is no way we are going to let him down. It is true that we have always liked adventures; so, off we go traveling down another new road titled “Orthopedic Impairment.”

"Who's Your Best Friend?"

Eddie has participated in therapeutic horseback riding since he was eighteen months old. I have heard miraculous accounts of what children could achieve when riding and the language that can be discovered. Just today I heard a story of a young rider whose very first words happened on a horse and that type of story is not uncommon. Because Eddie has been riding for 4 1/2 years we have expected our own tales to tell of great discovery and achievement while riding. The reality is that Eddie's progress has been slow...steady...but slow.

It was less than a year ago when he began to communicate verbally with Bob and Timi who run the organization. Even so, they would only get one word or maybe two words together at best. Even though we weren't seeing major breakthroughs, we never thought of discontinuing the riding. We knew it was still helping him in all areas and Eddie really enjoyed riding the horses and the camaraderie with the couple that works with him.

Besides language, horseback riding has greatly improved Eddie's posture and "trunk control." Due to his low muscle tone, he started out lying down on the horse and progressed to a sitting position over time. His posture on the horse immediately translated to the rest of his life and he still sits up straighter than I ever have.

Anyone that has ridden a horse will quickly admit it is a work-out. At our first visit, Eddie cried the whole time. After asking for my permission, Bob told Eddie he couldn't get off the horse until he stopped crying. It was almost three hours later, in the middle of which was a transfer to a barrel, before Eddie stopped crying. However, he never did that again. That type of follow-through is a rarity because of time, patience, and low expectations. I knew, and Bob and Timi knew, that Eddie understood. No matter how hard it was for all of us; if we had given in, Eddie would have cried twice as long the next time.

Today, Eddie had a breakthrough like none other we had seen on the horse. Bob has asked Eddie since day one, "Who's your best friend?" His favorite game is getting his riders to say "Bob" as an answer to that question. Bob has received all kinds of responses from other children but Eddie has never answered. Bob doesn't take it personally, as Eddie rarely answers a question. Even then, Eddie only answers when given choices. Today, that changed.

Bob posed the same question he does every time, "Who's your best friend?" Immediately Eddie said, "Bob is my best friend." I thought Bob was going to pass out. His face flushed, he had tears in his eyes, and Eddie had just made his day and probably his whole week. Eddie had not only answered, but used a complete sentence. I was astonished. All those years of brainwashing paid off for Bob and for Eddie. All joking aside, now I am grateful to Bob and to Timi, because I too have a story to tell about a great discovery on the back of a horse.

Happy Birthday, Eddie

Yesterday Eddie turned six. Birthdays to us are all about finding a meaningful way to celebrate and generally assuring that Eddie has a fabulous day. Basically, two major tasks comprise my planning.

First, let’s start with the presents. Some of you may have read the article I wrote about purchasing toys for visually impaired children for Family Connect. It is always a difficult process; especially when I feel like I have purchased all the great toddler and preschool toys and he has not developmentally progressed to the next step.

Another difficult part about presents is that most of our family and friends want my advice on a great toy. What does Eddie need? What does he like? What does he want? This isn’t an easy question when I can’t just ask Eddie. I left everyone to their own devices this year and Eddie received presents I had never thought of and I was grateful they were thought of for me.

The other major task is planning a party or at least some way of making his birthday into a big deal. Eddie’s idea of a great birthday would be leaving him alone in a room with his very own cake…and a side of pancakes. This does not scream “birthday” to me or to his sisters. The question then is whether we force Eddie to have a party, when the chaos might be too much, or let him have a solitary evening.

Being a mother, and because on this night I was babysitting four other children, we had a party. A full disclosure would mean stating that Eddie didn’t participate much in the party. He was allowed to also spend some quiet time alone listening to a new CD, which he loved. All the other children, including his siblings, were still able to enjoy decorations, treat bags, and the general “party” atmosphere.

Due to Eddie’s solitary preferences, this party was more for the children in his life. It gave them an opportunity to bring Eddie into “their world” and to understand that he is a kid just like them. We still celebrated Eddie and he ate cupcakes and enjoyed multiple renditions of “Happy Birthday to You.” When it came time for presents, Eddie wouldn’t participate. I decided to give every child here a present, counted to three, and they all opened one for Eddie. Then, we went around the table and each kid told Eddie what he got.

It will take Eddie days to fully explore each gift, and even longer to understand what each gift is for, but we can’t simply ignore a birthday. Eddie had a great time at school and I felt like he knew the day was about him. It was important for us to bring that same feeling home. On the way to bed, he was sung to one more time and he complimented us nicely by stating “Excellent Job”.

Feeling a Little Guilty?

Do you like to read? Do you have a favorite hobby? A favorite TV show? Do you like to have a “date night” with your significant other, or a “girls night out” with all your best friends? Every time you indulge in your favorite activity do you happen to feel a little guilty? More than a little guilt? Well, if you answered yes, I can relate.

I think all parents feel some guilt when they do something for themselves and step out of the parenting role. This can be intensified when you have a child with a visual impairment. I spend a lot of time teaching Eddie and simply being his mom and I often think about the goals yet to be accomplished and how much teaching and parenting sits ahead of us. Really thinking about that “to-do” list could surely trigger a full-out panic attack.

There is one way that I avoid these melt-downs. I do something for me. I admit it openly and honestly. I have a few hobbies that I cherish, especially quilting. I love to read for leisure…that’s right…leisure. This means ignoring my dozens of books about parenting, self-help, or tactics for special-needs children. I set that pile aside and break out my latest “book club” read. Yes, I am in a book club, a quilting group, and occasionally enjoy an evening with my friends.

These activities do take up some of my time that could be devoted to my children, but honestly I think that is OK. My aunt, and close confident, once told me openly that her love of quilting also took away time from her children when they were young. She also said, “I was a better mom because of it.” I completely agree with her.

There are days when I am up to my ears in diapers, therapy goals, phone calls, doctor appointments, teacher conferences, etc. and I feel myself becoming overwhelmed. When all I want to do is either cry or take a nap, I know it is crucial to have some “me time”. Anxiety and stress is not easily hidden from children and as I’m sure most of us know, they pick up on it fast. Pretty soon all our emotions are escalating and nobody is happy.

In the interest of my children, I will stop feeling a little guilty. I will enjoy my favorite things and know that one day I can share those hobbies with my kids. I will keep my own identity for myself, for my children, and even my husband. Frankly, sometimes he’s begging me to go to my sewing room. He also understands that to be a good parent, sometimes we have to step back and do something for ourselves.

Eddie and "CC"

Today I feel like finally discussing our biggest struggle. My husband and I are lucky enough to have three children, as I’ve mentioned. Eddie is the second child, only eighteen months younger than Molly. Eddie adores Molly and thinks she’s hysterical. Anytime Molly laughs, Eddie laughs. Molly has just started really cueing into Eddie and understanding why his life is different from hers. They used to act like two “only children” but now she seeks Eddie out and helps bring him into our world, whether he wants to be or not.

Eddie’s younger sister, Cindy or “CC” as we call her, is a very different story. As of right now, Eddie views “CC” as the thorn in his side. She is 3 ½ years younger than Eddie, weighing in at 2 ½ years old. For the past year, Eddie has decided he wants nothing to do with her. “CC” did not instigate this behavior and for the most part, stays out of his way. It appears Eddie just woke up one day and decided he wasn’t going to tolerate her.

For a family that spends most of our time together, this is extremely hard. When “CC” comes within six feet of Eddie he starts crying, yelling, and hitting himself in the head. If he simply hears her voice, even if she’s in a different room, he behaves the same way. This means we can’t sit down for a meal without a raucous. We can’t go out to dinner. We can’t take them in the double stroller anymore. This one thing has us sitting on edge every moment we are all in the house together.

We have tried ignoring the behavior and redirecting the behavior to no avail. In most cases, we could remove the “trigger”, but not in this case. Sorry Eddie, “CC” isn’t going anywhere. We recently spent four days with only Eddie because his sisters were with my parents. Eddie did not throw a tantrum or hit himself the whole time. “CC” was back in the house five minutes and he was in total meltdown mode.

For us this is heartbreaking. I’m upset about this more than anything else because I want Eddie to find the benefits of this relationship. He does allow her to play with him if an adult is present and completely running the activity. He loves when she kisses him goodnight (probably because she’s going to bed). Why does he overreact to her even though she virtually avoids him now (sadly)? Why does he not react to any other children this way? I don’t know.

I can say that now I am on a mission. Eddie, we are going to solve this and you are going to find joy in your whole family! As we all know…this will pass. Sibling rivalry goes back to the dawn of time; Eddie just takes it to a level most families don’t have to deal with. Having talked to other parents like me, I know I’m not the only Mom in this boat, so please, throw me a life-preserver if you have one.

Music Class Part II

I knew Eddie was going to have an “on” day from the moment he got up this morning. He crawled into our bedroom and then stood up next to the bed. As he was climbing into our bed (which he sometimes does) he said “I love you.” Instantly I was ecstatic because he had never said that to me directly. However, being the “turkey” that he sometimes is my excitement was quickly diminished a bit. After waiting long enough for me to be thrilled, Eddie quickly added…“Daddy.” Of course.

Since I knew this was going to be a great language day, I was ready to take him to another music class. For those of you who read my previous post about the infamous “head-butting” incident in music class, you can understand why I was a little anxious to go back. Luckily, the music teacher had agreed to some private sessions with Eddie for a while until he adjusted to the music program and classroom.

Today was to be his first private session, which would only be thirty minutes. I hoped that Eddie would be cooperative and enjoy at least half of the class. Well, that little “turkey” exceeded all my expectations. He was extremely attentive and willingly participated in all the activities.

Eddie has great rhythm, which he rarely uses while listening to a song, but instead “drums” on his own. Today he kept beat right along with the music. The teacher started singing specific tones and while I tried to mimic her, unsuccessfully, Eddie was patiently listening. The second time through the tones he took over for me and with great success. I had rarely seen him respond so quickly to an activity. His language, reciprocal play, and attentiveness were supreme.

What a great success! I am so glad I continued to pursue the music lessons even though last time I left highly embarrassed and sort of upset. This was a fun activity for Eddie and Mom that could offer him great benefits. Eventually, I’m sure he’ll be able to join back up with the class. It is frustrating that he can’t enjoy all the extra-curricular activities his sisters do, so finding something like this class for us both to participate in is truly outstanding.

What is up with that kid?

Three times since Eddie was born I have been asked to participate on a "parent panel." This is a great experience to share with other parents our story from the moment Eddie was born until where we are today. I can honestly say I was a pillar of strength twice and a sobbing mess once. Admittedly, the time I cried the whole time (which wasn't pretty), I was 7 months pregnant with my youngest. I have no idea why I even agreed to share on that occasion.

The last time I was on a "parent panel," I was asked by other parents how we handle stranger's questions and stares in relation to our son. I'm sure we all find ourselves daily subjected to questions, comments, and stares that we have to deal with. This was particularly true for us when Eddie was in the toddler stage. He wasn't talking, walking, or looking at anybody that tried to interact with him. Because nobody could pinpoint what exactly was "up with that kid," they simply stared and wondered.

My answer to how I deal with these situations was simply that it varies depending on my mood or how my day is going. I have often thought the next person that said, "He is SO sleepy," may be the victim of my building frustration. I wanted to have t-shirts made for Eddie that said, "I'm not sleepy...I'm just blind." I longed for the day he could use a cane so at least people would know "what was up with that kid."

Ultimately, I tried to stay positive. Days I felt like it, I would educate strangers that seemed interested and days I didn't, I simply said, "Yes, he is SO sleepy." I've heard of other parents carrying business cards of their child's condition with a website to find more information. I thought this was great because you don't have to share your child's life story, but you are educating your community, which your child will benefit from as they get older. One day when I am organized, I plan to make up such cards for Eddie.

I've found the greatest way to share about Eddie is with other children. Kids are so curious and they aren't afraid to ask questions. One child recently asked when I was going to take Eddie to the doctor to get his eyes fixed. (Like we just hadn't made time in the last six years.) Through talking to him about Eddie and that he would always be blind but that was OK, I was educating his friends and his parents.

Simply put, I try to realize I always have a bigger audience then just one person and how I portray Eddie will be how others see him as well. It is best for strangers to remember that blind children do exist and are highly capable; instead of remembering the child's crazy mother who yelled at them in the supermarket.

The True Inspiration

Today I was thinking again about when we learned Eddie was blind and where I turned first for inspiration. Because I didn't know anybody who was blind I clung to books and stories about adults with visual impairments. I read every story knowing that Eddie could be just like them one day. I thought Eddie will be adventurous; he will downhill ski, he will climb mountains, and he will be highly successful and inspirational. I felt like I was reading about our own future in those amazing books.

Now, I still expect great things from Eddie, but I don't expect him to be all the same things those men were. I suppose it is like saying because my daughters are sighted they will be exactly like Julia Roberts or Barbara Walters because they are successful women that can see, too. Really the books I read were about blind "superstars," comparable to the rich and famous all little children aspire to be like.

The stories I read were truly amazing and filled me with hope for the future, which was exactly what a new parent of a child with a visual impairment is seeking. I wanted to be told about success stories. I wanted to know what blind people can truly do, which is pretty much anything any of us can do and then some. As time has passed, I now see that in reading those stories, the blind individual was not really what inspired me. The true inspiration was the story of their mothers.

That is what stuck over time. What stayed with me was the devotion, strength, confidence, and patience of women that raised these incredible individuals who happen to be blind. These were women that had faith in their children and often raised them alone. These were women that always said yes; yes to riding a bike, to playing a sport, and playing with the neighbors. I'm sure they were scared for their children, but they refused to let that get in the way of teaching their children to be confident and independent.

Now that I am again seeking stories (this time about autism), I am not looking for "success stories" like I once did. I do love reading about Temple Grandin and find assurance in her stories, but I am not reading her books picturing Eddie to be just like her. I realize her story is not my son's, and that I can't read about other people and know that will be him one day.

This time I am knowingly looking for more stories about mothers that will be my role models. Mothers that will do anything for their children, try anything, and take risks. Mothers like that can take any child, and turn that child's life into a success story. True inspiration from mothers like that will help me push Eddie to achieve his maximum potential. Then after he does that, I can't wait to watch him surprise me by achieving even more.

Friends = Cookies

Eddie struggles with peer relationships and doesn't typically enjoy other children unless with an adult. It seems the only purpose of the adult is to keep the children at least 2-3 feet away or out of his personal bubble. If touching is involved for the purpose of the activity that is OK, but certainly puts the other children's safety at risk. I almost feel like having parents sign a disclaimer before playing even "Ring Around the Rosie" with Eddie. It might read something like:

"Yes, we will be playing a traditional game and in most cases all children enjoy the activity. However, in the event of pinching or scratching please know your child will not die. Eddie does not intentionally mean harm; your child was just closest to him at the time of his meltdown."

Now, can Timmy come over?!? Luckily, I have a few friends who always say, "Yes!"

Today, Eddie found a benefit to friendship that showed signs of promise. I was watching my friend's kids this afternoon. She has 4 children, and with my 3, that makes 7 kids in the house. In some states, I probably need a daycare license for such an event. Eddie was sitting at the table listening to some music and there was also a bag of cookies near him but out of his reach. Being an outstanding caregiver, I was pretty much letting the kids have free reign over the cookies.

Every time a child came to the table, they would take a cookie for themselves. Upon hearing footsteps, Eddie would say "cookie." Very faithfully, every single one of them would give Eddie a cookie when they got one. This meant each child had a few cookies and Eddie had that multiplied by about six. When a cookie was placed in front of him and he didn't realize it, they would even move his hand on top of the cookie so he could find it. The kids range in age from 2-11 and they all offered this help without my guidance.

I was so impressed by this interaction that I did not intervene. I realize Eddie should not have a couple dozen cookies in one sitting (even though they were small), and that if this goes unchecked he could quickly outweigh me. However, he was interacting and talking to those kids in his own way and acknowledging their presence instead of seeking isolation.

I was so proud of him and of all the kids for helping him, even though Eddie usually ignores them. Once he has the importance of friends down, then I'll tackle the idea that friendship is a two-way street. This is a concept his 7-year-old sister has yet to grasp.

Why are you hearing from me?

My name is Emily. My husband and I are parents to three unique children including my middle child, Eddie, who is blind with multiple disabilities. For what I can only say were therapeutic reasons, I recently began writing short "journal" entries about the interesting aspects of raising Eddie.

What I quickly realized was that my intended audience was other parents like me. Parents that had children with visual impairments and could relate to my stories without feeling anything but understanding and familiarity. FamilyConnect has given me the opportunity to reach that intended audience.

If you happen to read some of my entries now or in the future, you will see that I am a person with few secrets. I like to share. I am generally optimistic, but also have days where I just can't get there. I will openly admit that having a child with special needs isn't very easy.

In my real life, I am often too proud to say that I need help and I like everyone to think I have my act together. It is simply too hard explaining to friends without a child like Eddie that some of my days are extremely difficult. I feel that when I meet families like mine, I can let my guard down, and that is what I hope to do with this blog.

I am opening up my life to others in the hope that parents like me will be inspired to share, to reflect, and to ask for guidance. Also, I hope that family members of said parents will be able to grasp how complicated and exciting our lives can be. Please comment on my posts to support or question my opinions and actions.

Remember, I am only one mom from a rural town practically in the middle of nowhere. Your stories and insights are equally as important as mine and just as interesting if not more so. With that being said, I hope you enjoy the humorous, sometimes difficult, look into my life. I am anxious to begin this online relationship and know that through supporting each other, we will be better parents for our children.

Apples and Oranges

When we were first told that Eddie was blind, I could not stop comparing him to other children his age. As many parents will tell you in my same situation, you almost have to disconnect yourself from your child's peers. Most of us hide out in our homes and make midnight jaunts to the grocery store. This time period of isolation varies per parents...it can be days, months, years, or sadly, forever.

For me, it was somewhere between days and months when I realized that if I wanted friends at all, for me or Eddie, I had to come to grips with who my son truly was. Living in a rural town, I was never going to meet a young mother with an infant son who happened to have Optic Nerve Hypoplasia. I certainly met other parents who had children with special needs, but we didn't fit quite right with them either. Just because another family was in the "special needs club" didn't mean we were automatically going to be best friends. My old friends truly were my best friends and I had to make a decision to embrace them.

This meant not just embracing them, but also their children. It is incredibly hard to listen to your friends discuss the "terrible twos" when your child isn't even moving independently at all. At first you want to shout, "Quit complaining...you have it so easy!" This will probably clear out a room and your social calendar in record time. What I had to realize was their children's mishaps were just as big a part of their lives as Eddie's developmental delays were to me. I had to stop comparing our horror stories because it truly was like comparing apples to oranges.

You see, we all have struggles in our lives. To be a good friend, I had to appreciate things from perspectives other than my own. I had to realize that every mom gets overwhelmed, and for reasons just as valid as mine. Many times, I'd rather deal with the mishaps in my own parenting adventure, which I vaguely understand, than those of my friends, which can completely astonish me, just like Eddie.

Labs and Crocodiles

Every three months, Eddie is required to have his blood drawn to check on hormone replacements he must take. The day begins by fasting (starting at midnight)...no food OR water. For Eddie, the water is the hardest part. From the time Eddie wakes up, he follows me around the house saying, "drink of water". "Drink of water." "Drink of water." It is horrible because he doesn't understand why Mom is being so stingy with the water. I'm sure he's thinking, "It's just water. I'm not asking for pancakes!"

After a few hours of feeling like a horribly negligent parent, I am finally able to take him to the hospital for the blood draw. I must say, I was so proud of him today because he walked all the way to the car and back with me in one hand and his cane in the other hand. It is a LONG walk to the back of the hospital and he marched right along not dropping has cane once. I could tell even the random onlookers were impressed (with Eddie and with his Mom's patience).

The only good part about labs is the language Eddie comes up with. Last time he said, "goodbye, thank you" repeatedly until we actually left. He won the hospital staff over even though he was so upset. Today, he started by saying "goodbye", "goodbye", "goodbye." After he got poked with the needle, he had those giant crocodile tears that immediately trigger my "mom" tears.

I was trying to keep it together, when out of nowhere he says, "See you later, alligator." Followed quickly by, "After a while, crocodile." Just like that, we were all smiling, the blood draw was over, and Eddie was enjoying a nice tall glass of water...followed by, "Goodbye, thank you."

Overwhelmed...sort of

Wow...what a week! It was pointed out that Eddie is a vessel for Autism...how's that for positive spin? :-) Then, Friday, we had his IEP meeting. For those of you not in the know, that is an annual (at least) meeting at school where we discuss his progress, goals, objectives, etc. It can be a little intimidating and a lot overwhelming.

Eddie's meeting lasted over 3 hours and over a dozen people attended. It can be hard to hear all the things your child isn't doing yet, goals that haven't been met, and milestones that are yet to be checked off. What am I saying, "it can be hard"...no, it just is hard. I left feeling emotionally exhausted. I'm lucky he has an incredible team of caring, knowledgeable professionals. I can't imagine having to go in and fight for what he needs...they willingly seek it out.

So...besides his IEP meeting...I took him to a music class today for a trial run. He did...OK. Of the 45 minutes, I'd say he enjoyed at least 20 minutes...tolerated 10 minutes...and had it with 15 of the minutes. In fact, we left a little early due to his meltdowns. Why is it that I am the only parent that gets "head-butted" by their child during a music class? I'm sure it has happened before, but why can't it happen to someone else WHILE it is happening to me. It would be so much less embarrassing that way.

Come on, Eddie. You like music! You like dancing! You like spending time with Mom! These are all the perks of going to music class. How can I help you realize that you can and will have fun there...the whole time? I guess that will be a new goal for me...another one.

...Autistic

When I began this blog I knew Eddie was blind and I knew he had significant developmental delays but the reasoning for that wasn't clear. Well, now it might be. Yesterday he was officially diagnosed with Autism. For many months we had considered the possibility but had run into problems in assessing him.

First, many evaluators didn't know how or were afraid to diagnose a blind child with Autism. Second, many blind children are misdiagnosed with Autism. Third, we weren't sure what would change or how it would be changed with an additional diagnose. Finally, many of his therapists were already using autism methods with Eddie. So after deliberating over each issue, we pushed to move forward with an assessment.

What does this mean? Well, Eddie hasn't changed since we found out. But, now we know we need to approach him differently and from a new direction. We don't only need to teach Eddie how to communicate, but also why he would want to communicate. We have to help him become a part of our world and to engage in social interactions. Maybe with this new diagnosis we can find a path perfect for him.

Are we sad? Not really. Admittedly, I was when I first considered the option. Now, we are truly excited about where to go next. Eddie has always been unique. Eddie has always been tricky. However, even the evaluators fell in love with him within minutes. He is truly a gift...and now we continue to unwrap the present that is him.

He Made a Funny

Eddie told his first joke yesterday. It was awesome! This is the kind of thing that is always great when your kid does it, but for Eddie it was monumental. We weren't just excited about it, but we were proud of him. Of course, I'm not sure he knew it was a joke, but he does now. He always gives the punch line when prompted and laughs hysterically right along with us. It isn't the same without sound effects but here it is just the same:

His Dad, "Eddie, how did you sleep last night?"

Eddie, "I went...(insert snoring sound effect with eyes closed)."

I know, maybe only a simple joke a parent could love, but we are VERY excited about it!

School: To Go or Not To Go

Trying to decide whether a child is sick or not when they can't tell you themself is very difficult. When said child also has a tendency to be a trickster to get out of unpreferred activities, it makes it even more of a guessing game. For the most part, Eddie loves going to school, but on occasion he knows it is a lot of work. These days I have to decide if he is really sick or acting sick to take a "personal day."

Today was one of those days. He didn't really want to wake up. Yes, he did have the stomach flu over the weekend, but yesterday he was fine. No, he didn't have a fever, or any symptom signifying impending doom. However, he really didn't want to get out of bed, or to eat breakfast (which is really unlike him).

After rethinking the morning, I decided that he didn't really go to bed when he was put there since I did find him sleeping in the middle of his room (not in bed). That is usually a dead give-away that he wasn't sleeping all night. After deep thought, I decided to send him to school.

This means the whole time he is there I worry about the phone ringing. Sure enough, it rang. Eddie had thrown two major tantrums, but it was the same part of the day he threw tantrums the last time he was at school. Here we go again!

Is Eddie throwing a tantrum because he doesn't feel good? Or...is he trying to get out of another unpreferred activity? The ongoing dilemma...

Grieving

As I work my way through school to become a teacher of the visually impaired, which I'm doing now, I keep running into information about "grieving." Most often we think of grieving as the actual death of someone, but we can actually grieve a great many things. Through brainstorming at school, different types of grief were mentioned including grieving a lost job, lost marriage, lost friendship, and even lost dreams.

As a parent of Eddie, that last one "lost dreams" is something that I have to realize and work through on occasion. When we were pregnant with Eddie we had a lot of hopes and dreams for our son and envisioned a future that we didn't know would not come. At least, not exactly as we dreamed. This hasn't been a grieving process that I went through once and now I'm healed. Many times I am thrown back into the realization that our life with Eddie is not "typical." That doesn't mean it is worse, but that it is much different.

Large milestones that are missed tend to bring about the hardest times for me. I grieved when he was 1 1/2 and still not walking, I grieved when he turned 3 and still didn't talk, and most recently I grieved when school started this year and he didn't go to kindergarten with all the other 5 year olds. Children who I watched stretch their Mom's tummy's while Eddie stretched mine walked into that school and I witnessed it because I was taking my 1st grader to school. This was extremely hard and still brings tears at the memory. A prime example of grieving the future that never came, even when I thought that was behind me.

As a note to parents like me, these days are few and far between. I don't always miss those "lost dreams" but now have found new dreams for Eddie. So much focus is placed on bigger milestones for typically developing children, but the small steps are important, too. Many times celebrating the successes of small steps is what keeps us moving forward instead of "grieving" the larger ones.

Choice Words

Meaningful words have been few and far between for our son, Eddie. He literally can sing hundreds of songs, but has yet to put together language for functional purposes until recently. Over the past six months, we have began hearing words that are direct requests from him and are giving us the first look into not only his needs, but also the things he really likes. What we have come to realize, is this boy really loves food.

Our early-rising son likes to get up between 4:00 and 5:00am and work his way to the side of our bed. He sits down there on the floor and a cascade of food requests pour out from his newly found vocabulary. To us, this is solid gold:

"pancakes"..."cookies"..."pancakes"..."crackers"..."pancakes"..."banana bread"...etc.

As you can see, "pancakes" is his favorite word and food. After he is told (politely) that he should keep dreaming if he thinks we're getting up at 4:00 to make pancakes he solidly requests, "drink of water." There you go, Eddie, we can definitely get up for that (because we'll be back in bed in less than 1 minute).

Happily, he moves on to find more toys to play with, we go back to sleep, and almost exactly one hour later (curious that he can eat one hour after his first morning pill and "drink of water")...we hear coming from the side of our bed..."pancakes." Of course.

Shoes

Shoe shopping with young ones...oh, the joy! Trying to find shoes for little feet is very complicated, especially when they have to be just the right color, or the right character, or they need lights, or wheels, or plain...oh yeah, and Mom says they have to be the right size, too. Good grief.

All the gadgets is certainly not a problem for Eddie, he doesn't care. However, my dear son does have foot orthotics so I have to buy him a shoes 2-4 sizes too big, they have to be wide, and then I immediately rip out the insole and cut off the tongue sometimes. It seems wrong to take a new pair of shoes out of the box and then dissect them, but this is usually what is required.

After getting fitted for new orthotics today, we made a dash to Target with his 2-year-old sister, CC, in tow. Picture this...I have him sitting on the floor, surrounded by shoes in multiple sizes, while he is complaining as loud as he can to stop this "foot-torture." In the mean time, CC is sitting in the cart, complaining as loud as she can, yelling, "Out...out...out...out...out!!!" Doesn't she understand that the whole purpose of the cart is containment? Possibly...

So, after 1/2 hour of subjecting the Target shoppers to our family symphonics, I pick out the EXACT same shoes he had with his last orthotics, just a size bigger. Yes, my husband asked for a different shoe this time, and yes, he did offer to take Eddie shoe shopping, and yes, due to my control issues I didn't let hime. Well, honey, next time this job is all yours!

Just the Beginning

Introductions...I am the mother of three children. I have two girls with a boy in the middle. My son would be the "Special Needs Child" I'll be most often referring to; he is five years old, loves music, has a great laugh, was born blind, and also is developmentally delayed as a result of??? He has autistic tendencies, but an autism diagnosis has not been given officially.

The reason for this blog...I often feel the need to complain or even to get excited about parenting my son, Eddie. What I've found is that it is really hard to share these sentiments with people who aren't in my unique situation. EVERY parenting situation is unique, but not everyone understands medication mishaps resulting in multiple diaper leaks from your 5-year-old son. Most five-year-olds don't even wear diapers let alone need medication. (There was a little insight to my morning.)

A good friend of mine has a great blog where she shares the joy and pain of raising a toddler, which is why I decided to start writing about my husband and I, Eddie, and our other two children. This will hopefully be therapeutic for me without having to family and friends every time I need to vent...or cheer. Of course, I'll still do that too, but it is nice to share without receiving immediate feedback or sometimes pity. Pity I can do without and it doesn't make me feel better. This will be my place to share, and maybe pity myself a little, but mostly to provide insight into my regular, somewhat unique, life.