5 facts about Nick:
he loves NASCAR
he will hug you
he screams – ALOT
he fixes mac-n-cheese
he is severely mentally retarded (MR)
Nick is my daily challenge. Some days he wakes up and is as happy as a hermit crab being released back into his ocean, and we sail through with smiles. Other days, the only sound emanating from our home are Nick’s screams and our frustrations. He screams about pain, but also about transitions. “Time to brush your teeth” WAAAAAAA! “Time to get dressed” WAAAAAAA! You get the point.
Added to his preferable mode of communication (screaming instead of making his mouth form words or use his hands to sign) is his extreme MR. Simple conversations cannot be exchanged with him. “How was your day? Did you play with your friends?” Every time the answer is a flat, “Yeah.” It would be “yeah” if we asked, “Did you fly a space shuttle to the moon and simultaneously find the cure for cancer?”
It is overwhelmingly frustrating at times. And it’s not just that he can’t answer “How was your day?”, it’s that this is reality. He will NEVER be able to answer “How was your day?” He can’t think or understand that abstractly. We all find ourselves vacillating furiously between celebration for moments where “he gets it” and extreme despair for what this child’s future holds.
This week on our way to Nick’s PT, OT and speech sessions, Allen and I tried to explain to Nick to pull his shirt up over his left shoulder. He will let it slide off and his tiny body will eventually start to make it’s way through the neck of the shirt. Part “I don’t care”, part left-sided hemiplegia with his cerebral palsy. The situation was ridiculous. Allen and I are in the front seats, I’m trying to drive and look at Nick through the rearview. Nick is in the third seat, unreachable. “Pull your shirt up! Nooo, the other side. The OTHER side Nick.” This went on for at least 2 minutes and when Nick finally performed the requested task, I cheered like a crazy woman and assigned a name to the task, “Good job FIX SHIRT!”
Nick started with speech that morning and immediately launched into his “I’m MR therefore I can do what I want” routine with his rag doll impersonation. Great….. Yet another professional who will not like my kid because of his behavior….
As a parent, you take ownership of your child’s behavior. Society says that he must be the way he is because of how you’re raising him. Society doesn’t stop to ask, “Is this child adopted? Did this child suffer imaginable abuse and trauma that may never be overcome?” Society doesn’t get down on the child’s level, attempt to look him in the eye and ask, “What do you want? How can I help you?” Society simply gives the proverbial hairy eyeball and turns away thinking, “That mother can’t make her kid behave. SHE must be doing something wrong.”
Putting it in raw terms, society places shame on why Nick is the way he is. Nick doesn’t know shame (either that or he’s followed along with me during my e-course on Ordinary Courage with Brene Brown), so he’s not at all worried. By default, the shame falls to us as the parents and probably a little to the other children. We’ve learned, though, to take a Nick-led approach and just let the disapproving glares roll off our backs as best we can. What those narrowed-browed people don’t realize is that this world without Nick would be a world without simple accomplishments, without a day full of hugs and slobbery kisses, a day without grace. Carrie, from daysofwonderandgrace.blogspot.com, shared this relevation recently:
…the invisible attributes of God may be more clearly manifest in the lives of people with disabilities and those who surround them because it is so patently obvious that grace emanates from God, not people.
Back to the story. Allen and I had errands to run and when we returned, I quietly slipped into the pediatric therapy room and watched. The OT was bringing out a game Nick recognized, so he was willing and excited. During the game, she methodically and gently held his right hand while encouraging him to use his left.
Pause, as his brain tries to tell the left hand to move. My breath catches and I try to hold back the tears of this reality for me. I know he can use that left hand (he was reigning champ last weekend on Mimi’s Kinect system in boxing!), but to see him struggle reminds me of just how much his CP affects his life. To see him struggle reminds me of the degree of MR he lives with.
And then he made a motion, may have taken all of a second, that makes me smile. He pulled his shirt up over his left shoulder.
He did it without my “official word” prompting. He did it without someone calling his attention to it. He did it without cue cards on the wall or someone signing to him. He did it without an encyclopedia’s worth of IEPs and a lengthy conversation with a professional on positive reinforcements – all things I’d spent the last hour worrying about. AND he did it with his left hand.
I’m watching from the other room feeling frustration and grief and anger when the lightbulb over my head flickered on. I need to just KISS when it comes to Nick. Keep It Simple Stupid. In this situation, the stupid applies to ME. Me, the one who over-thinks and worries too much. ME, his mom.