Even though Gracie is getting better and better at walking, she still tires fairly easily. It makes sense; her body does not work the way it should, so she has to work harder to do basic things like standing and walking. A few months ago, her OT gave us a referral to a durable medical equipment company, and we ordered her a new wheelchair/stroller. It came today and it is awesome! Gracie is sitting in it right now, watching “Sofia the First.” She loves it. I love it too – I can’t wait to go jogging and take her with me in her new stroller. It rolls very well, so it will be a big change from our old stroller that made me feel like Sisyphus.
We have come a long way since the first time we ordered an adaptive device for Gracie. When she was just a baby, her physical therapist wanted to brace her, practically over her whole body, to encourage proper posture. I resisted; it didn’t feel right to me. At that time, we didn’t know that Gracie couldn’t feel pain, but had we known my resistance might have been more well-founded (Gracie is prone to pressure sores). As it was, though, I was not ready to accept that she needed braces, and strongly resisted the therapist’s recommendations. Maybe it was just because she was so pushy and not very easy to work with. Either way, I found out a few weeks later that she was going behind my back and bracing Grace at daycare when I wasn’t there to object, so we fired her. Our new therapist worked with Gracie for a few months and again recommended that we try orthotics to keep Grace from twisting her ankles so much. Still hesitant, I eventually agreed. Chad was heartbroken because it reminded him of his childhood—he spent several years in a full body cast after extensive hip surgeries, and more years after that in braces, learning to walk. I was heartbroken because it meant she was different, she wasn’t normal, she couldn’t do it like everyone else.
Those little orthotics didn’t last long. Sure enough, she got wicked pressure sores each time we tried to use them. Plus, it didn’t stop her from trying to twist her ankles. In fact, she was pushing against them so hard her therapist was concerned she would fracture her tibia. She told us to stop using the orthotics. It was a relief to toss them aside, even though it meant we would have to look elsewhere for solutions to keep Grace from twisting her ankles. We tried taping instead, which worked for a little while. She soon learned to push through the tape, though, and again we were at a loss for what to do to protect her feet. It would make us cringe to watch her twist her ankles around, or put all the weight on the side of her ankle. It is amazing that Grace made it through those years without an ankle fracture.
By the time she was 2, we wondered how she would ever learn to walk. We knew by then that Grace had no response from her sensory nerves, so she was not getting any input from the ground. It explained her severe ataxia – imagine trying to walk without being able to feel the ground! We knew that if she would ever learn to walk, she would have to figure it out herself. The only thing we could do was keep encouraging her to try, so that eventually she might work out new neural pathways and learn the impossible task. We ordered her a reverse walker – like a little old lady walker but the open part is in the front, so it encourages proper upright posture.
The day the walker came was another sad day. We had to accept at that point that our daughter was (is) disabled. It’s not that we didn’t know before, but that shiny metal frame was a glaring reminder of her disability. It was awkward and cumbersome, and it was difficult for her to use it in our small house. We would try to get her to use it to take walks, but she tired out so quickly that we would end up carrying her AND the walker – a difficult task indeed.
Soon after the walker came, we found out about Gracie’s visual impairments. We regretted ordering the reverse walker instead of the regular one – a regular front-bearing walker would have also acted as a cane of sorts to keep her from falling down stairs or curbs. But at that point, we had already committed and Gracie was getting used to using the walker. We brought it to her old school for blind kids, and something amazing happened. In the school’s wide and brightly-lit hallways, Gracie learned to walk. She had plenty of room to navigate with her walker, and she formed those new neural pathways – she learned how to hold her body while she walked – and it wasn’t long before she ditched the walker and took steps on her own. It truly is amazing; without peripheral vision and without any input from her feet, she should not be able to walk, and yet she figured it out. That bright metal frame was the key to her success, and she still uses it. It gives her stability, so she can navigate the hallways at her new school without us worrying that she will lose her balance and take a hard fall.
When Gracie started at her new school this fall, we were so apprehensive. It is the school district’s only non-inclusive school, and I’ve been hearing about it since Gracie was a baby (mostly not-good things). I was afraid of sending my girl who has come so far to a school where everyone is disabled. I didn’t want to hurt her self-esteem – and I didn’t want to hurt mine, either. But when we got to the school for our tour, something amazing happened. The school is fully accessible, including the playground. The accessible playground opened my eyes. Grace can’t play on a regular playground unless there is someone right there waiting to catch her if she falls. But with the accessible playground, she doesn’t need a helper – she can’t accidentally fall off the side, she can get up all the ramps with her walker, there aren’t any ladders or ropes or all those other things that make regular playgrounds off-limits.
After that school visit, I realized that even though she’s disabled, she just needs a little help and she can get around like everyone else. A few pieces of adaptive equipment could change her world – could give her the independence we never dreamed of before. I started visualizing what adaptive equipment could help her in our house. I wanted to get her a frame for the toilet, so that she could start to learn to get her own pants off if she needs to go potty (she doesn’t have the balance to stand up and pull her pants down, but with bars to hold she might be able to do it). I wanted to get her a sturdy step-stool so she could use the sink without us worrying that the little toddler step-stool would slip out from under her, or that she would slip off the side. And, I wanted to get her a wheelchair – the kind that looks like a large stroller – so that she could go to parks, the zoo, and other places that require more walking than she’s capable of. This time, it wasn’t sad or depressing to order the equipment – it was exciting! My girl might be able to live a fairly normal life after all, if we only got her a few things to make it easier for her.
So today, the wheelchair arrived, as did the “handlebars” for the toilet. It wasn’t depressing at all! I’m excited to see if we can get her potty trained now – or at least, get her to the point where she can change her own pull-up. I’m excited to be able to take her places that were inaccessible to us before. I’m grateful for the opportunity to provide her a bit of normalcy. We have come a long way since that first sad orthotic delivery, and I’m so happy for her.