In the world of special needs there is a great deal of focus on all the things your child can't do. We go to physical therapy because they can't walk or run or kick a ball. At occupational therapy we're told they can't clap their hands or stack blocks or properly hold a spoon, as if maybe we hadn't already figured that out. And stringing beads or sorting shapes? Well, for some of us that's just not in the foreseeable future. Or maybe not even in the forever future. The speech therapist helps out when they can't say "R" or "L" or, in our case, they can't utter a single word. The feeding therapist, who happens to be the same as the speech therapist, draws our attention to the fact they can't move their food from side to side. I'm willing to bet most people are blissfully unaware that a child is supposed to move their food from side to side. But if they can't, a feeding therapist will be sure to tell you. And the developmental therapist? It seems like she should be all of the above mentioned therapists wrapped into one, but she's not. She's there to tell you that your child can't play right. He can't make eye contact with other kids, or take turns rolling the ball (the ball that he can't roll in the first place) and he most assuredly can't stand to have his hands in the grass. The list goes on and on. He can't. He can't. He can't.
I appreciate all of these therapists. They are an invaluable resource who help us reach for the stars. But at times it's discouraging. No. It's discouraging all the time. We really don't need anyone to tell us most of the can't do's. All we need to do is go to a playground or a church nursery or sit in the pediatricians office to know that most three year old's dance circles around your 13 year old in the area of development. And if you thought maybe your two year old was catching up, that notion is quickly squelched when the nine month old sitting next to you is doing things your kid can't even think of doing. But as mama's we can't go there. We can't allow ourselves to get into the funk of discouragement. So we work. We push. We encourage. We dust off the creativity that's been shelved in our mind and we find things that they can do. And we never give up. We never, ever give up.
Kruz can't roll a ball, but by golly he can crawl backward like lightning. He can't say please or thank you but he can blow raspberries so hard his eyes cross. And toilet paper? Oh man, this boy can play with toilet paper like none other.
He's rockin' that push toy and if this mama has anything to say about it, he'll be dancing the macarena soon.
Kruz makes slow but steady progress in pretty much all areas of development. He's delayed. No question about it. But on a normal day, when we're busy playing at home, who's keeping track?
Moise, on the other hand, is not progressing quite so steady. Two words sum it up. He's Blind. All the things that we taught him to do with his vision are no longer useful. Now that we have come to terms with his vision loss and he has too, I think, we are struggling to find things he can do. He needs some of his independence back, that sense of self worth that comes from doing something for himself. He also needs something to occupy his mind and his time. His list of can do has been dramatically reduced as a result of the vision loss and the wheelchair confinement. Winter is quickly approaching and without being able to take him out much in the cold temperatures, it has potential to be a very long and unpleasant season. I'm trying to be proactive, to come up with things he can do from his wheelchair and without his vision. And what I am finding is amazing. He can do lots of things.
There is that game of Perfection that had been stuck up on a shelf because "he can't" see the shapes. But he can feel them and he can still match the shapes with the holes. The process pains me slightly as it takes five times as long as it took with vision but he's meticulous and persistent and he can do it. We set the timer after he's done and the shapes popping when time's up still elicits a giggle.
He can still work with his vegetable men. The feet may or may not end up on top of the head and the ear may protrude from the mouth. But, hey, we live a life of things that aren't always exactly right. He's the creator, constructing them exactly as he thinks they should be. And so.......they're perfectly imperfect.
Without my girls home to help out with the cooking and baking, I'm missing my kitchen help. The electric mixer is a new favorite for my boy. A master chef in the making. We have to make some minor adjustments for the wheelchair height but bar stools serve the purpose and he hangs on to that bowl as if his very life depends on it. We won't mention the frosting that flies all over the kitchen because he can't see it and I'm not looking.
Moise is no different than any other 13 year old. Emptying the dishwasher is not his favorite chore but he is diligent. Putting the silverware away is his new after school job. After careful hand washing he places each utensil exactly where it belongs. When he's done everyone knows it as that drawer closes with a loud bang. I'm working at figuring out how to let him empty more of the dishwasher but the wheelchair does pose some challenges.
He loves his baby brother and he's careful, so careful to hold him tight. He sits there and smiles as Kruz yanks his glasses off and tugs at his shirt. It turns my heart to mush every single time.
For awhile, I lost my vision for Moise. The world felt upside down without his vision or mobility. It felt like life had knocked us down flat and kept kicking us. But we're getting up now and finding that these boys are just as wondrous as ever. In spite of all they can't do's, there are so many things they can do.
For those of you reading, especially other special needs mama's or educators, I'm open to suggestions. I would love any thoughts on things a boy can do from a wheelchair without his vision. After all, we all know it takes a village to raise special kids. We're all in this together.
God is good, all the time.