Thursday, August 19, 2010

Noah & Equipment

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Noah's new car seat was installed. It gets five thumbs down. Noah not only hates the fact that he sits lower and cannot see traffic or me in the rear view mirror, but doesn't like his head boxed in, his legs spread apart, or the fabric that made him sweat like he just came out of the bath tub after only a seven minute drive.

Noah isn't a fan of most special needs equipment. We've found ways to try to rig regular baby items to accommodate him. His kidcart still remains a hated thing in the basement, even after it's foam modifications, arm rest removal, foot restraint removal, and crisscross harness disablement, he still thinks it is the worst creation on earth.

The bath seat I think might be the only thing we have that he will give a valid chance at, and I say that now since we haven't officially submerged it in water with him sitting in it. It may be fine now, but could be a disaster when used. Noah is simply particular in what he likes. Granted I know that some changes can be good, but for a special needs kid like Noah, things have to be introduced slowly and I can't force anything upon him or he'll just shut down and I'll wind up breaking his spirit. Noah is so driven, his determination so strong - that if I tell him to do something otherwise, it will be counter productive.

And in making that statement I know that we've had professionals in the past that would have said, if you take on that point of view, that you're doing a disservice to your special needs child, that they need to be disciplined and forced to do things. Noah understands the word no, he also understands words like clock, light, airplane, mamma, dadda, grandma, puppies and Elmo. He'll look when requested to find each object you ask him to find them (or at least the objects that he knows thus far). Noah isn't going to run rough shot on us or sass us back (although if he sassed me I'd be a bit pleased to know he could). Just because I'm not forcing Noah to engage in a type of therapy doesn't mean that he will not grow up to be a good child. Instilling values and therapy are two entirely different things.

It's hard because you balance recommendations from therapists, trying to incorporate what you can, knowing what won't ever work even you push your child beyond all limits, knowing in your heart you'd like to see the most recovery you can get, but knowing in the end a thousand people could have various opinions and you'll still come out of things right where you started. Chris and I do our best to follow what I call our inner compass. God doesn't give you a rule book with any child and he especially isn't going to hand you one for his greatest gift and challenge; the special needs child. For those who have been presented with this journey, you have nothing but your heart and love for that child to help you along the way, and of course this inner compass that you try to follow the best you can.

Is there a pass or fail to this? I don't know. If I do this over something else will Noah walk? I don't know. There are many schools of thoughts, and therapy methods out there. Each one of them is going to market their way is the right way. I try to gravitate towards what Noah responds to, what he seems to be receptive to. Every child is different, even in the special needs world. No two brain injuries are alike. One of my most favorite phrases; each so beautifully different just like snowflakes.

There is so much weight already on our shoulders, our minds swell with things that could potentially help, things that may hinder, or ideas that will simply be a flop. We have to chose a road and go with it, we can't look back and say maybe the other road was more scenic and flip a u-turn without knowing for sure. This path makes it especially hard for people designed like me; the planners. Flying by the seat of your pants all the time is an awkward feeling when you feel there is no ground beneath you. Maybe there is a right or a wrong way. But I don't know that any of us can really judge that for another. We can only follow Noah's lead and hope that he helps us guide him towards all the right avenues on his behalf.

Where hope grows, miracles blossom
-Elna Rae


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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.