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It’s Only a Cabbage

Running errands can be tricky with any children, anytime. I like to be efficient and purposeful when getting things done, and kids don’t really work that way. I recently had a high need for food and more and ended up taking my two youngest to town, including my son who is blind.

Eddie sitting outside at a table eating a brownie with a dog drooling over the food in the background

We started at a bakery due to gathering Mother's Day treats for my pregnant sister, and it was a good excuse for baked goods. We found a parking space near the front, a manageable line, a gluten free brownie for my son, and an open table near a window. Eddie loved the snack and a dog passing by had to stop and drool too. We then headed to the mall.

The mall was a challenge; loud, unpredictable places always seem to be. After about a good hour of putting up with shopping, Eddie was ready for some down time. We headed to my sisters, with her treats in hand, and I decided to leave the kids with her while making the dreaded Saturday run to the grocery store.

Afterwards, I gathered the kids and headed home when I quickly realized I’d forgotten cabbage. I tried to tell myself it’s only cabbage. The additional store stop probably wasn’t worth it. But, I was making pulled pork sliders, and the thought of them without homemade coleslaw was almost unbearable.

Was it worth unloading the kids? Was it worth pushing them when they were already tired of errands and each other? Was it worth making an unplanned stop and throwing a wrench in our planned routine? Yes, I decided, yes it was.

While driving towards the store, I conjured up a plan. I made a big deal about forgetting cabbage and asked Eddie if he would help me. I said I had to stop by the store, and I was too tired to push the cart by myself. “Eddie, would you please help me,” I asked. Eddie quickly agreed and probably wondered why his Mom was SO lazy.

Eddie holding a bag of rolls while leaning on a grocery cart

The plan worked like a charm. Eddie happily pushed the cart while his sister grabbed the goods. We talked about the grocery store, the aisles we traversed, and the scents in the air. While waiting in line, Eddie checked out the conveyor belt moving the cabbage and had a surprise visit from his Grandma’s friend. We were in and out in under 15 minutes even with a bit of learning mixed in.

My grocery store/extra stop worries were unnecessary. Yes, it’s only a cabbage. A cabbage that happened to make my slider delicious, and a cabbage that proved I overthink everything.

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3 Helpful Tips When Taking Eddie Somewhere New

Having a child with special needs can wreak havoc on your social life. Invites may come in for parties or more and the energy it takes to attend is sometimes too much. We often beg forgiveness from our friends when we turn down invitations, but fostering our friendships is important. Instead of always saying no, I’ve found some ways to make a new outing more enjoyable for us and Eddie.

Not long ago, I took the kids to a friend’s house for a dinner party. My husband was elsewhere, so I knew it would just be me and our three kiddos. From the moment I told Eddie we were going to a party, he just kept saying, “No. No Party.” Because he can become fixated, I heard “No Party” for almost the whole 20 minutes it took to get there.

When we arrived, I spent the first half hour making sure Eddie was going to be content. I knew that if he was settled, I’d be able to enjoy the social event, and so would his sisters. If he became too nervous or bored, his behavior would ruin everyone’s time, including his. When expectations aren’t set, or he doesn’t know what’s going to happen next, his anxiety gets the best of him.

Helpful Tips for Taking Eddie Somewhere New

To settle him in, I utilized these three steps:

  1. Oriented him to the location. I walked him around and into all of the rooms that he was allowed to visit. We found all the stairs, and I guided him up and down stair cases. We talked about the rooms with closed doors and how he wasn’t allowed to enter. Most importantly, I showed him where to find the bathroom.

  2. Found a quiet space for any needed “time-outs.” I asked our host if this space could be in her bedroom, and she quickly agreed. I let him know he could go in and close the door. I showed him the bed and let him try it out, so he had a place to lay down and just be alone if he needed a break at any time.

  3. Showed him some preferred activities. Eddie loves to be on the move, and this involves going up and down stairs. After finding the stairs with him, I made sure he could safely maneuver them independently. He also loves to rock, and there was a rocking chair he spent most of the night in after he was shown where to find it. Sometimes I even bring the hammock (shown in this picture below) just in case we need it. Music is another favorite, and we brought his tablet so he could enjoy his tunes.

Eddie outside sitting in a hammock

After a little time dedicated to lowering Eddie's anxiety, we had a great evening. We were able to visit with friends, enjoy dinner, and relax—this was true for all of us, even Eddie. We talk about pre-teaching at school, so kids know what to expect, but we also have to take time to teach in the real world.

By simply making sure Eddie’s needs were met from the beginning, he could enjoy an unpredictable night out as much as the rest of us. The adults aren’t the only ones that need to get out once in awhile; Eddie and his sisters do too. An added bonus is that every new outing provides a learning opportunity, and we never want to miss out on those.

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How Edward Came into the World

Last week, Eddie turned 12, and it didn’t knock the wind out of me as it has in year’s past. I wasn’t met with fear about his future, anxiety about how much he has to learn, or any measure of grief over the life I once envisioned for him. Instead, it felt very much like a birthday for any kid... a day of celebrating Eddie. At one point, I even browsed through his baby book where I rediscovered the narrative of his birth.

Basically, I went to the hospital with his Dad and my sister, was induced because he was late, and had my water broke because it wouldn’t go on its own. Eddie was big; my doctor and a pediatrician were on hand, and after the delivery, everything seemed to be good. All the grandparents rushed the hospital room, we were moved to recovery, and Eddie’s stats were recorded as 21.5 inches long and 9 pounds, 12 ounces.

Besides being huge, and a moment during delivery when they thought his arm had been hurt because of that, Eddie came into this world in much the same way all other babies do. Starting only 12 hours later, we were met with uncertainty when they discovered he had low blood sugar. Next, a non-functioning liver kept him in the NICU for 17 days. This of course was followed by his optic nerve hypoplasia diagnosis four months later, and an autism diagnosis five years after that.

The few hours that followed his birth was the only time in his life where things were going as planned. Within 24 hours, I’d learn that none of us are in control of our destinies. I’d learn that months of planning his future, and years of planning my family, was fruitless. I’d learn that at the end of the day, we don’t make our future... our future makes us.

This is why my favorite word is “serendipity.” Merriam-Webster defines it as “the phenomenon of finding valuable or agreeable things not sought for.” Oxford’s meaning states, “the occurrence and development of events by chance in a happy or beneficial way.” To me, Eddie was a serendipitous event in my life.

I’m not saying that a higher power wasn’t at play, yet I’m not traveling that reflective road today. What I’m saying is that Eddie is somebody I wasn’t looking for, wasn’t planning for, and yet he was the finale in a “development of events” that has brought me and my family great happiness and value. My favorite word is “serendipity” because that word means “Eddie” to me.

So, happy 12th birthday to Eddie. I look forward to years of surprises and unplanned happiness that he continually brings. I would hope for everyone to experience some measure of serendipity in their life, and even better, some measure of Eddie.

Eddie holding a cake in a pan with two candles on top for this 12th birthday

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Gaming Day with Students Who Are Visually Impaired

Last week, we took Eddie to an accessible gaming day sponsored by the Washington Talking Book and Braille Library for students who are blind or visually impaired. The event was organized by a local Teacher of the Visually Impaired (TVI) and included tactile board games, Legos, Play-Doh, lunch, and more. Eddie had a blast, as seen in this overly joyous picture of him.

Eddie at school in a bright red shirt laughing with his hands in the air

Because blindness is such a low incidence disability, many students in rural districts have never met another kid like them. Even within larger schools, being a student who is blind is very unique. When organizations like our state’s talking book and braille library offer events to get these kids together, it’s best to take advantage.

Due to Eddie’s additional disabilities, I didn’t really know if he’d even participate with the other kids. I wasn’t sure if he’d fit in or if he’d get too upset with his routine being out of whack. As I worried about all the “what ifs” for a few days, I decided asking his school if he could participate would be worth the risks. When the district’s teacher of the visually impaired and paraprofessional agreed to take him, I was impressed with their dedication to Eddie and looking forward to the benefits for all.

Attending with my “work” hat and my “mom” hat on helped me take it all in. I was most impressed with the level of empathy and acceptance shown by all the kids. Many of the students had additional disabilities or were separated by many years of age, and yet, they connected and had fun. Eddie enjoyed spending the day playing games with older kids, and with some coaching from his TVI, I think the older kids enjoyed him too.

Kids were directed to explain to Eddie what they were building in Legos by saying his name often so that he knew they were talking to him. Eddie was then willing to explore creations and listen attentively to those around him. Other students played music or sang songs, and Eddie soaked that right up too. He even played a game of Connect 4, and with some peer support, he continued to be engaged without the guidance of an adult.

Finding Eddie’s peer group isn’t an easy task. However, I couldn’t have been more proud of the kids we met that day. Their willingness to accept him and adapt for him resulted in an excellent experience for them all. Now, if we can only get Eddie to adapt for them... which we will get to, I’m sure.

Again, I’ve had another example of Eddie rising to and surpassing my expectations. It seems I’m always reminded to give him a chance even if I’m unsure. I’m grateful there are dedicated educators and programs out there offering unique experiences like this. As parents, we all need to participate more often, so our kids can reap the rewards.

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Accessing an Inaccessible World

Last month, my book club read “The Rosie Project” by Graeme Simsion. In short, it’s the story of an adult man seeking a wife. A man who presents as autistic and struggles with social connections. There is a scene in the book where he is considering a relationship and wondering if he will find “satisfaction.” The author wrote, “Another world, another life, proximate but inaccessible.”

As I read that sentence, I instantly related it to Eddie; partially because he is autistic, but also because he is blind. This character in the book is wanting happiness, connectedness, and relationships like other people. Knowing that he sees it happen every day, going on all around him, and yet, he is unable to access it himself. Just like Eddie.

I jokingly call Eddie a “lingerer” because he likes to be around people; he seeks us out, but then he just...lingers. It’s like he is proximate to us at all times, but our world is inaccessible. There are moments where he joins right in an activity or a game. But it’s always because he knows the routine. He knows what is expected, what is going to happen, and how he is going to enjoy it.

He knows when Dad yells, “Let’s get Mom!” that all the kids will now try to tackle and tickle me until I’m screaming for mercy. He knows that if his sister, CC, starts wadding up newspapers, we’re going to start throwing them at each other all over the house. He knows that if I’m playing the piano, he’s welcome to sit down and join me, and I always love the company. He knows because we’ve shown him.

For Eddie, accessing an inaccessible world is left entirely up to those who surround him. It’s up to his teachers, his parents, his siblings, and his peers. It’s up to his community to make sure he isn’t left out and to include him in our world. He will always be in our proximity, but proximity alone isn’t good enough.

Eddie and his father standing in front of a fence on a ferry

For children who are blind, we need to find ways to help them access the lives they want. To teach them how to carry on relationships, so they have choices and ultimately satisfaction. I’ve often said I don’t know exactly what I want for “Adult Eddie,” but I know I don’t want him to be lonely. We have to teach him how to access an inaccessible world because the alternative is simply not an option.

Resources for Your Blind or Visually Impaired Child

Multiple Disabilities: When a Blind Child Has Other Disabilities

Family Life When Your Child Has Multiple Disabilities

Parent's Perspective: Becoming Part of the Community

Give the Gift of Equality