We were off to Noah's warm water session today, when he re-opened a wound that he acquired on the back of his heel last week. I knew they wouldn't let him go in the water with an open sore, so we went and did other things today at the school instead. He sat in on a music class, and learned to walk like an Egyptian to the 80's song by the Bangles. Then he got to play on sensory equipment the school has, which I might say is some of the better equipment I've seen around. I'm very impressed with what they have to offer children there, especially those with special needs. It of course is a private school, so this is proving to be a very expensive venture for us. I've heard lots of feedback of why don't you just let public schools get a hold of Noah, or participate in early intervention programs and so on, but the thing is as a parent you have to find the right match for your child. And we've done that. This school is amazing for Noah and he's doing and learning so many wonderful things. He's responding remarkably well to these instructors. We've tried lots of different things with Noah and not all of them have been successful. And when you feel like you found exactly what he needs, you want to hold onto it the best you can. This school is the perfect match for Noah.
Long-term I really don't know how we'll financially continue to afford to do this, we wouldn't have even gotten this far for this semester had it not been for Noah's fundraiser. It's been extremely hard for Chris and I to put aside our pride and realize that when you have a special needs child you cannot do it alone. Children like Noah cost millions over their lifetime. And that is an honest statistic. No exaggeration. Insurance companies aren't there for us, the government certainly isn't there for us - we are on our own just like most other special needs families out there.
But to see Noah making these tiny improvements that he otherwise couldn't do on his own, makes us push to find a way. Chris and I are trying to do without everything we can to provide for Noah. He is our first priority. It doesn't matter if our clothes have holes or our shoes have no soles... we will give everything to him always. That's what any good parent would do. Even if you are starving you give your last piece of bread to your child.
I wish there were sponsors for children like Noah, you can find sponsors for race cars, sporting events, and groups. But no one ever sponsors a special needs child, unless you happen to subscribe to sponsor a child in another country that is starving and needs help from a television ad. They are really forgotten members of society in a lot of ways. I shutter to think about all the physical, mental and emotional gains all of these special needs children could have if only they had access to every single possible form of treatment and therapy that was financially obtainable to all these families. So many of us are limited in our options.
Noah started displaying a gag reflex while holding objects in his hands the last few weeks, something that is new, that we haven't seen before. His therapists tell me this is quite common for children with sensory problems. I feel like there really isn't a problem that Noah does not have. Neurological issues, sensory issues, physical issues. The brain is a terribly hard organ to fix. Yet I continue to cling to hope that the brain can change itself, build new bridges, and make connections. There are days when I do get discouraged that Noah still cannot do anything children his age are doing. He isn't sitting, cannot crawl, cannot get his head off the ground, still lacks total head control, isn't walking, can't hold a bottle, can't self feed or even hold food, he can't even hold a toy. But I still have hope that maybe one day, just one day he might.
I know that his two-year deadline is fast approaching. The date that most therapists and physicians measure is the end all be all of skills. If you don't crawl by two, you never will, if you don't walk by three you never will and so on... it's such doom and gloom. I don't think the medical community really realizes what a negative impact that has on both the child and the parents when you basically tell them give up hope, accept reality and realize that this is as good as it gets.
I was very fortunate in my childhood. I had so many people that believed in me, and continued to believe in me. They built my spirit and carved my confidence. They shaped me into what I consider a really great person. Most of all my parents never ever told me I couldn't do something, even things I wasn't good at. I never could hit a baseball, never could do a cartwheel, never could climb a rope, but no one ever gave up on me. No one ever said she'll never do it. I could probably hit a baseball now... well maybe after many tries, I can guarantee a cartwheel will never be in my future, and I might be able to climb a rope if there were alligators nipping at my feet... but the point is, no one ever says to a typical developing child you will never amount to anything and you can never do these things, so why do we instill in special needs children that they will never or can't do something? How terribly unfair that is to write them off so prematurely.
I want to run from those who say Noah won't or can't ever do something. I don't think that is positive energy for him to be around, it will never encourage him if he feels someone doesn't believe in him. He doesn't need people in his life that are going to give up on him. I don't want Noah to be just another number in the system. Another quota for a public school, another dollar sign for a government program. He is a person, and he deserves to have people in his life that genuinely care about him with all their hearts, that don't just make him a job. But a priority as if Noah was their child.
"Don't listen to anyone who tells you that you can't do this or that. That's nonsense. Make up your mind, you'll never use crutches or a stick, then have a go at everything. Go to school, join in all the games you can. Go anywhere you want to. But never, never let them persuade you that things are too difficult or impossible."
Douglas Bader.
Love,
Noah's Miracle by
Stacy Warden is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
.jpg)
