Tuesday, January 11, 2011

Social Fears

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We went and looked at some walkers yesterday with Noah's physical therapist. Although Noah is not tickled about the experience I was at least able to see how he walked in it. Which was nice. I liked the kid walk that we borrowed but it always seemed like he wanted something to do with his hands, and the bike type seat always seemed a little firm for him and he's got a tiny frame (he comes by it naturally) Chris and I both really looked similar as babies. The advantage to the kid walk is a child could easily come up to something closer, where other walkers really don't allow for that because they have a larger front frame. I thought about the Bronco walker after looking at some pictures that I had seen from online friends that have special needs children too. But it would force Noah's body forward and thus causing his feet to really launch from the front, and from what we can tell Noah does not scissor when he walks and is able to walk flat footed one foot in front of the other. Which I think is a good thing. Or at least in my mind I'm telling myself that it is.

I liked the way he was positioned in the Rifton Pacer, and he would have a place for his elbows and hands to land. It's a bit bigger than the kid walk, has a larger frame, but I like it's bucket seat better, it's softer and complete fabric that can be removed should Noah ever learn to increase his walking skills, something that only time can determine. And of course I come home and look at my house and think this home is so completely wrong for a handicapped child. It's carpet to carpet except the kitchen, the entire first floor really needs pergo or hardwood for Noah to navigate such a thing. Chris and I have no money to even pay for therapies that are not covered by insurance, let alone redoing our home to make it more accessible for Noah. I don't know if there are places that help you financially to readapt your house, or we're simply on our own. I really don't know how that works. This is all so new to me. I would love it though if I could make it something where Noah could have some freedom and potential independence in some way. I don't expect him to learn to walk in a walker overnight. Yet I know I will need to give this some thought.

Noah will probably also need to be re-fitted for sure-steps again, his little feet are growing. I'm glad he doesn't need full AFO's yet, maybe he never will I don't know. It's early to tell. I still dream of him walking, but I keep these dreams guarded, I bounce back from reality to dreaming and back again all at the same time. And really it's all up to Noah, it's how far he wants to go. I can only be his guide, the rest is up to him. I will cheerlead him on, and never ever tell him that there is something he cannot do. My hopes is that this little determined person will reach places no one ever thought he would.

It will take many months to get Noah a walker, Medicaid isn't fast. And equipment doesn't just arrive in a week. We still need to measure Noah and work out all the details. Hopefully by Summer he might have his own walker. We still don't have a pediatric stroller/wheelchair worked out yet. We're constantly trying to give that some thought. And I'm assuming that Medicaid will consider his walker a stander, so I'm assuming we wouldn't be getting a stander for Noah at all. I looked at the Rifton bikes that they make for kids, at first I looked at it thinking Noah will never ride a bike, but his physical therapist thinks that Noah may be able to do it as he gets older he just has to learn to pattern his leg movements. That was encouraging. Sometimes as a mom I think about all the things Noah might miss out on, all the things I would love him to have access to. Of course Medicaid doesn't pay for bikes, but we'll cross that bridge when we get there. Chris and I can only go day by day with getting Noah what he needs. We try so hard to provide for him in all the best ways.

Today we did had therapy and Noah's sensory class. I was a bit worried that sensory class would be an utter disaster considering we've taken a break for the last three weeks due to holidays and that Noah has been struggling a bit more lately in those areas. He had some moments of gagging - an indication he's on overload, and was getting agitated towards the end, until one of the therapists bounced with him on the balls and trampoline. Noah needs that movement often times to re-group and center himself. The kids played with play dough today, but Noah just can't yet. His little hands are so far away from working to play like that. So we watched the other kids build their gadgets and mold their dough.

As I was leaving there was this group of moms that were feverishly making play dates in the hallway. I twinged, I know I shouldn't - sometimes it just happens. Over silly things obviously. I know that no one is ever going to ask Noah for a play date. Noah can't play. He's two and just lays on the floor. Other moms aren't going to invite me over for things, they aren't going to include me in their "reindeer games" and tupperware parties or whatever stay at home moms do. My child is different, so therefore I am different. There are days when I feel that distance growing even bigger. Although I'm so busy tending to Noah because his needs are much like a newborn or infant rather than a toddler, that I tend not to have the time to slow down to really realize how left behind I really am.

Parents can't invite me places, I can't travel with Noah to the Botanical Gardens, to the Colorado Springs Zoo... so after a while the invitations stop, no-one really wants to figure out what you can do, or what Noah could make it to do or what he'd like. I think in a way they hope that you cannot go, then they've done their duty of trying to include you, while still keeping their distance from "the disability". A conscience clearing technique that maybe we all possess to some degree. To say well I tried, even if I didn't really try at all.

Even though Sociology was my major, there is so much to be said that you simply cannot learn from a book. Have a special needs child and realize that's the huge social experiment. Who needs to study which way people tend to stand in an elevator? Or how they react when a stranger sits next to them for a meal... try special needs. There should be a huge book on that. My biggest wish is that people wouldn't be so frightened of it. My life isn't contagious. My child doesn't have a disease, sure people might stare at us, or ask questions, but the only person that should even affect or make uncomfortable would be me, not the person standing next to me.

"Have no fear of robbers or murderers. They are external dangers, petty dangers. We should fear ourselves. Prejudices are the real robbers; vices the real murderers. The great dangers are within us. Why worry about what threatens our heads or purses? Let us think instead of what threatens our souls."
Victor Hugo


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.