Raising a Child Who is Blind and...
by Emily Coleman
I’m going to share a little secret that is often hidden by my mostly positive writing; raising a child like Eddie is pretty hard. Multiple times a day an overwhelming feeling of anxiety starts to build, and I do my best to block it, but it is always there under the surface. I could easily focus on the struggles he faces every day…and the fear that I can’t help him. Honestly, sometimes I can’t help but focus on that…but not today. Today, I’m focusing on being thankful.
I’m thankful for his ridiculously contagious laughter, which comes out of nowhere, and makes us wonder if he’s possessed.
I’m thankful for his hugs, and air kisses, because he’s never quite patient enough to make it all the way to my cheek.
I’m thankful for his willingness to use a white cane, even if he hasn’t quite figured out its intended purpose.
I’m thankful for the dedicated staff at his school, and their willingness to work hard for Eddie, when I know I’m not always a picnic…and neither is Eddie.
I’m thankful for a certain occupational therapy “guru” who has just agreed to evaluate my son, even though she has no time, and owes us nothing.
I’m thankful for a foundation in our area, which awarded Eddie a grant, so we don’t have to deny him what he needs.
I’m thankful for my husband, who is the best father I have ever met.
I'm thankful for my daughters, who surprise, amaze, and entertain me every day.
I’m thankful for having so much family that we simply can’t be with them all on Thanksgiving…and I’m thankful that they all want us there, and accept Eddie for who he is.
Finally, this Thanksgiving, I’m most thankful for having known my Grandfather-in-law, who we unexpectedly lost last weekend. He was without a doubt the biggest fan of this blog, even though he never got on the internet. Family printed off copies of my postings, and he faithfully stowed them chronologically in a binder and referred to it as his “book.”
He often spoke about Eddie, and knew Eddie really well because of reading the “book.” He had a greater understanding of my family, because he always took the time to read…ask questions…and simply care. He was a generous, loving man…and thanks to him, so is Eddie’s dad.
So, on this day, the only overwhelming anxiety I feel, is that I won’t be sending a copy of this article to him…and his “book” will remain the same. But as with all anxiety I face, I’m not going to focus on that, because he wouldn’t want me to feel that way.
In honor of him, I’m going to instead continue to focus on being thankful. Thankful for Eddie, for our family, for support, and for a man that I’ll continue to think about every time I write…and that I know is still reading every word.
If you have a child with a visual impairment in your family...please comment below. What are you thankful for...how do you keep being thankful?
by Emily Coleman
I look at this picture from last Christmas and wonder, “How can it already be that season again?!?” Every year, literally every year, I am asked to consider Christmas gift options for my visually impaired son. Friends and relatives are looking for a great idea that Eddie would enjoy. As a parent, I’m more concerned about what Eddie needs. Most days, due to developmental delays, Eddie doesn’t communicate what he wants; however, I’m always aware of what he needs.
Eddie needs to be more independent. He also needs more activities that incorporate sensory stimulation. He needs more physical activity, and needs social interactions with peers. Like always, he needs more opportunities to learn and interact with braille. After compiling that list, I started thinking about how to make those needs into gifts that he’ll enjoy getting, and that everyone else will enjoy giving.
Since independence was my first thought, I’m going to start there. What I’ve learned from Eddie, is that he will perform more independently when motivated…so, what motivates him? The first thing that came to mind was music. Eddie loves music. He seeks it out and asks for it daily. In fact, many of his demands of us include turning music on…or off…or changing songs. He asks for our help…but does he really need it?
That helped me come up with my first gift idea; any musical device that he can operate on his own. When he was younger, this would have involved some simple toys that play the same song repeatedly, and are easy to activate. Now, the same song over-and-over drives him crazy, so I have to think a little harder.
He definitely needs more technology in his life, because that is how visually impaired students become successful in the “real world.” The obvious gift idea is a CD player, MP3 player, or other device that is easily operated by a child who is blind. Any of those options would increase Eddie’s independence.
Gifts that are sensory related…or involve physical activity…are a little bit harder to come up with. One thing Eddie enjoyed in the past is horseback therapy, and it isn’t often covered by medical insurance. Another family I know had everyone pitch in to buy horseback therapy sessions. I thought that was a fantastic idea! Other sensory items that always come in handy are new swings, trampolines, therapy balls, and I’m sure we all have something unique recommended by somebody.
Finally, social interactions and something with braille are always nice to have. This can easily be combined if you find a game…with braille. You can order games online that even come pre-brailled. I’ve seen this with games as common as Monopoly. Because I also know braille, I can pick up a game like “Uno” at the store, and add braille myself. If your child uses low vision aides, like magnifiers, I even recommend buying games off the shelf and encourage them to use their aides…which will only help them with skills needed for school.
Like every year, I really try to encourage gifts for Eddie that will build his skills…and make him more independent down the road. And when in doubt…I simply suggest braille books. The more he is exposed to braille, and has stories read to him, the better his auditory and tactile skills will become.
As usual, I’m speaking from my experience alone. Every year is new for me as I try to find gifts for my son as a toddler…as a pre-school kiddo…and now as an elementary aged child with a visual impairment. If you have any gift ideas…or any suggestions for Eddie…I’d love to hear them. Please take the time to comment on this post and share your own experiences and knowledge.
If you want more information and tips for the holiday season, check out the FamilyConnect Holiday Guide. You’ll find a lot of ideas and suggestions for families with visually impaired children. Be sure to check it out at www.familyconnect.org/holidays.
by Emily Coleman
Every year (or more), we have to travel across our state to visit some of Eddie’s doctors. When he was a baby, we decided that a little driving for some expertise was always going to be worth it. So, we have managed to keep him with the same specialists over the years, no matter where we live.
This time, since it came at the front of a three-day weekend, we decided to make a family trip out of it. We have many relatives near his doctors, and we always have a place to stay. Also, we simply love to see them, so quality family time was great to fit in. If we were going to submit Eddie to further medical review, we might as well have some fun along the way.
His first appointment was at the crack of dawn, so my husband took our daughters to breakfast during the appointment. They had a blast, and visited a fancy bakery that made sweet treats compatible to Eddie’s diet, so they brought Eddie back a gift. After that, we had four hours before the next doctor. To the girls’ delight, we headed to a mall.
Eddie recently received a handicap stroller due to his orthopedic impairment. He just can’t walk for very long without getting exhausted and upset. We put it to good use at the mall. The girls jumped in and out of their favorite stores, and Eddie was happy with a smooth ride, and some mimicked “roller-coaster” adventures along the way. Eddie likes to ride fast…and Dad likes to push fast.
Following the mall, we headed to the ophthalmologist. He has, by far, the best waiting room I’ve ever seen. There are toys to play on, ride on, play with, and simply enjoy. The girls, and Eddie, loved their time there. Oddly enough, Eddie was hysterically giggling when he got the drops to dilate his pupils. That has never happened before, but made the wait time until the doctor was ready go much smoother.
At the end of our doctor run, we spent the night at my brothers, and woke up ready to head to my in-laws. For the first time, we were going to take a different route, and it involved getting on a ferry. Once on board, we immediately got out of the van and headed upstairs to the outside decks.
We first moved to the front of the boat, and it was very windy. Eddie was covering his ears, and simply wasn’t sure. He quickly asked for a bathroom, which I think was an evasive maneuver. After that, we headed to the back, which was nicely enclosed by a high fence so Eddie could explore independently, and the wind was minimal. As the city skyline was growing smaller behind us, Eddie’s grin was growing exponentially larger.
These appointments are educational, but not fun. We meet with doctors that confirm and reiterate conditions Eddie has always had. We fixate on the concerns, because that is all there is time for…and it can be disheartening. Some distractions along the way help make these trips easier.
By spending time with my family, I’m reminded that I wouldn’t want my son any other way. Even though the doctor trips cannot be avoided, we can certainly make the most of it. As you can tell by Eddie’s grin, the main event was the ferry, and the doctors were just something that happened along the way.
by Emily Coleman
My daughters always want to help me in the kitchen…well, not always. They like baking and helping make dinner, but not necessarily doing the dishes. Usually, that’s when they disappear. However, while cooking, they see me moving about and getting into all the cupboards and their natural curiosity draws them to my side.
My visually impaired son, Eddie, is often drawn to the kitchen, too. The smells of dinner may bring him in, or simply the sound of cupboards opening and closing. To him, this all means that there is food happening, and he doesn’t want to miss out. The problem is, once he arrives and finds nothing is quite ready to eat, he gets really mad.
This weekend, I decided to have him help me make some muffins. I realized that if he wasn’t part of the process, he wasn’t going to understand what was involved. This is easier said than done because he doesn’t like to be put to work…and he generally doesn’t like to be “made” to do anything.
I could make him help me in every step of the process. I could hold his little arm with a spoon attached and make him mix the ingredients. I could force him to stay with me in the kitchen until every last part of the recipe was complete and then insist he wait with me patiently for fifteen minutes until those muffins were done.
I could have done all of that…and then we both would have been angry, irritated, tired, and hating cooking in general. Instead of forcing Eddie to participate in every aspect, I simply thought, “What CAN he do?” And also, “What would he like to do?”
Eddie enjoys tasting the ingredients, so sampling would have to be allowed. Also, he knows the location of the main parts of our kitchen…the refrigerator, the pantry, and the sink. So, if I asked him to do things in relation to putting items away, he could complete the task with little assistance…and therefore minimal irritation.
I had him stand at the counter as I brought out each item. To keep his attention this required lots of cheesy singing to the tune of “Row Your Boat” that sounded something like this:
“Making muffins in the kitchen...can be lots of fun! Eggs, oil, mix, and water...that is how it’s done!”
You’d be amazed how good I’m getting at making up songs.
Anyway, as I added each ingredient, I politely asked him to put it away. “Eddie, please put the oil in the pantry. Eddie, please put the eggs back in the fridge. Eddie, please put the dirty dishes in the sink.” You see my point. He was helping, he was learning where things go, and he was actually happy to do it.
We finished the lesson with only a couple of minor meltdowns from either of us. While we waited for the muffins to cook, we had some quality time playing his favorite games. In the end, we had delicious muffins, I felt like we’d accomplished something, and I was again reminded of what Eddie CAN do.
Time well spent.
by Emily Coleman
Children with visual impairments are often categorized by how much vision they have. Are they totally blind? Can they see light? What can they see? Can they read print...or do they need braille? Everyone wants the answer to the question, "How much vision?" Obviously the parents want to know, but so does every other person we meet...friends, relatives, educators, therapists, etc.
When Eddie was a baby, he was categorized as totally blind. We were even told by his first ophthalmologist (whom we didn’t see very long) that he would never have vision, and we didn't need to see another eye doctor ever again. Eddie not only was diagnosed as totally blind, but he behaved like he had no vision as well.
As he got older, we began to realize that he seemed to maybe have some vision. He was lifting up his head to see toys. He was reaching for items in his periphery. He was quickly finding the exit in every room...even if he'd never been there before. These were things it didn't seem like he could do without at least some vision.
However, as his parent, I still clung to the concept of totally blind. I couldn't assume he had aspects of vision, without any reliable proof. I had already built his life in my mind around a person who was totally blind. Everything had to be tactile, and vision was to be disregarded in my mind.
Now, at the age of eight, he has quite a bit of usable peripheral vision. He avoids obstacles entirely, he willingly explores new rooms, he visually scans the floor when he drops something, and he searches the refrigerator for his favorite foods. Even with all of these skills, I have a hard time seeing him as partially sighted. To me, he is simply blind.
In general, it doesn't matter how I see him, but it does change what I expect from him. Because I have ignored his visual skills for so long, he may not be using the vision he has as efficiently as he should. I now have a goal for myself to encourage Eddie to "look" as well as tactually explore.
I craved any information about Eddie when he was little, and now, I have a harder time wrapping my brain around new information. I painted a picture of Eddie, and that picture isn't easily changed. This can make it difficult for me to accept evaluations from professionals that disagree with what I have come to believe.
It took a teacher of the visually impaired updating my son's functional vision evaluation to change my perspective of him. The amount of sight certainly has nothing to do with how much I value Eddie. I loved him when I thought he was totally blind, and I love him today knowing he does have some functional vision. What does matter is that this may change how he can be educated.
Now myself, and his team, know that we have another sensory mode to tap into. If he isn't grasping a concept tactually...or auditorially...we can now try visually. It is simply another tool that may benefit him in his life. This potential benefit has reminded me to be open to change. My picture of Eddie should remain fluid, because if I'm not willing to accept change, I'm taking that opportunity away from him as well.