Sunday, January 4, 2015
People said Kreed would never write, communicate, type, learn academics or really do anything he is currently doing. When Kreed was younger he was lost in chaos and destruction because everyone just saw a child that was the master of destruction. They saw a child hit, spit, kick, drop to the ground, bolt in a split second, clear entire counter tops, find secret food to eat, find secret nail polish to spread everywhere, refuse to sit in a child seat in the car and throw all his shoes or anything he could find at your head while driving, step in and smear poop, and basically reduce a room to shreds in five seconds flat. In all is those actions, no one was seeing what was possible. Or why he acted that way.
It took at least five people to hold him down to do a simple x ray or any other medical procedure. He would bolt out of the room and pull everything out in a split second. Yet, seizure studies were done, blood drawn and IVIG began. None of it was easy. But all of it was worth it.
Which brings me to now when I think of all Kreed has accomplished and what is now possible. Because we never gave up. We refused to see just a chaotic "non compliant" child. He was a child without a voice and those around him refused to believe he could. We felt differently.
Three years later Kreed has a voice and he uses it loud and proud. And it has made everything possible. He now understands why we do things like x rays, MRI's or why we go to the doctor. He doesn't try to bolt or leave and for the most part can be talked through everything. (Except a blood draw- that still takes three of us ha, but we still hope!). He has done more seizure studies and even sleep studies! Check out the wires he not only let them put on, but he SLEPT like that.
Then they said he has to wear a bipap machine at night. Something even adults struggle with. Not only that, but an incredibly high pressure. And look at him now! He wears it at least six hours a night! It's possible! This child who won't even let you wipe his face with a napkin, wears a bipap mask. Because he has a voice and was allowed an opinion on which mask, followed social stories and practice rounds. None of it is easy. Every night I wake up at 2am to put his bipap machine on and again at 5am to make sure he kept it on. I run on very little sleep some nights! But it's worth it! He wears it and it helps him. This is what is possible. Even when people said it was impossible.
An MRI goes like a dream, he doesn't fight the mask they put over him and everything goes smooth!
Kreed was also a kid that bolted non stop- from the house, in the store, in the parking lot. Through a combination of his service dog and his device, he is my favorite person to shop with. He's engaged and he will go anywhere! While he still gets super hoppy haha, I'm happy that's the least of my worries. If he wants to hop through a store, so be it. But now he communicates when we are out- so instead of running to get what's in his head- he TELLS me and we have a conversation about it!
He even sits patiently while we wait for food, and will even go and get the food himself. He is also learning to pay and order himself! No one thought this was possible.
We document so much of Kreed because unfortunately autism families are often told what their child can't do, won't do or will never do. Or that their child is "non-compliant" when really they just haven't figured out how to get your child to cooperate. Kreed just wanted a voice. Now he LOVES "working", shopping, driving- you name it- all of the destruction from the past is exactly there- in the past
Because we dared to defy expectations and instead give him none, just wings to fly. While our life revolves around Kreed, I don't regret it for one second. He's made me a far better person than I would have ever been. He didn't ask to be brought into this world and to be faced with such difficulties. So the least I can do is make it easier. And happier. Happiness must come first. Kreed will forever live a life I will never experience- he lived most his life without ever having a choice and even though he has a voice now, it's still hard for him to effectively communicate. He needs help to talk, dress, shower, go to the bathroom, get food or go anywhere. He is reliant on us. I can't imagine the helplessness he just sometimes feel to be trapped in a body racked with pain and sensations he can't describe to me or have a remedy for. He can only show us with his behavior or now some words on his device. But through it all, Kreed continues to amaze us and show us what's possible and how the human spirit can endure and overcome.
Kreed will be 18 in this coming year and while that signifies independence for most of the population, I see it as an opportunity for Kreed to show the world what is possible past early intervention and that learning never ends. He will learn to write, type and communicate far beyond what anyone ever thought.
From chaos and destruction to love, happiness and learning. Kreed continues to show me every day what is possible. We will never stop believing in him. We strive for progress not perfection and we have our whole life to teach and to learn.
Kreed is my forever wingman and my right hand man. His unconditional love is incredible and his power to forgive when things are tough. My job is to make his life happy and that includes teaching him skills that will give him more independence. Kreed is so happy and proud when he can do things himself. We have our whole life to get there and I think he's done an amazing job so far. Most of all, Kreed has taught me and the world to think beyond what's possible and truly have no limits.