When you have a child with severe Cerebral Palsy, you are reminded of Plato’s precept constantly. Countless physical and occupational therapists, orthopedic surgeons, physiatrists, neurologists urgently repeat it weekly, monthly… yearly.
“We have to get him rolling over by ________ months, or he’ll never bear weight on his arms.”
“We have to get him to up from his belly by _______ months, or he’ll never sit or crawl.”
“We have to get him to crawl by _________ or he may never crawl, and if he can’t crawl, then he will never walk because everyone knows you crawl before you walk.”
The seven therapists and 9 doctors Will had those first three years never stopped talking and their dire script combined and ran though my head continuously as one voice and I visualized it as Munch’s agonized face in The Scream. Actually that’s probably what my face looked like those first few years. I wouldn’t know. I never had time to look in the mirror.
“If he can’t roll over! If he can’t crawl! If he can’t get himself in and out of sitting! If he can’t get into a tall kneel! If he can’t learn how to motor move, then he can’t walk. And there is evidence that shows that often when they can’t walk, they won’t eat independently and may not even talk! And if he can’t walk, he will be totally dependent on a wheelchair, on you, on outside help, and he will get bigger and heavier and how will you manage? And this will be forever, do you understand? F-o-r-e-v-e-r. We have to get him moving now or the opportunity is gone. And if he can’t move, it will impact his lung health and he will suffer more pneumonias and the number one killer of children and adults with Cerebral Palsy is pneumonia. Do you understand? We have got to get him moving!”
“YES, I UNDERSTAND!!!!,” I would scream back, again in my head. On the outside, I kept a poised, postured, and put together game face that instead said, “Yes, we understand, and we are continuing our home regimen to support your work here in the clinic.”
We rarely played with Will without trying to manipulate him to move. I regret that now. Everything was a staged and planned therapy to attempt to get him to move. We would “act” like we were reciprocally playing with him by stacking his favorite blocks, which he loved to knock over, but then we would refuse to stack them back up until he could crawl forward to reach them. And this might take him 15 minutes and he would sweat and drool and cry, struggling to get there.
He put up with it so he could play with us, to spend time with us because so much of his day was spent with therapists and in therapy. But we kept straight faces. We were going to save his life from being confined to a wheelchair. Tough love was the only love. We were just like the therapist and what he needed was a soft spot to fall, a reprieve.
We got Will to roll over. In fact, once he started, he couldn’t stop. He once crawled 100 times in a row all around the house. Jim followed him and counted. He actually learned to take steps in a gait trainer before he could crawl. He gaited at 1 and crawled at 2 and a half. He was making these great strides and then he began to grow, like inches at a time. Will was almost 19 inches long and over 6 pounds when he was born at 33 weeks, not your typical preemie. We always knew he was going to be a big and tall kid. And once kids with CP start going through growth bursts, they often stop progressing or even regress. Hamstrings tighten, adductors shorten, and hips displace.
Will stopped gaiting. He stopped sitting. And his crawl was slow and difficult. Tendon and adductors were lengthened, therapies were increased, and an intrathecal baclofen pump was placed. But once you take away spasticity and you change the dynamics of how your major muscles move, then you start over. At age eight, Will had to relearn to roll over, to sit , to crawl, but he never did regain the ability to gait in a walker.
And that’s okay and after 8 years, Jim and I were tired and Will was exhausted. And yes, the screaming voices were unfortunately right. He can’t walk. And he can’t feed himself. And he can’t talk. In hindsight, I don’t know what we could have done differently for Will. Maybe I should have worked less and taken him to more therapy. Of course, we couldn’t have afforded what therapy he did have had I not been working. Maybe we could have done more therapy with him at home in the evenings after school but he was usually so exhausted from school that he would barely even play. “Maybe’s” and “what if’s” are a dangerous mind game to play when you are parent to a child with special needs.
So, we gave up his stroller wheelchair and ordered him a custom wheelchair with wheels so he could propel himself. We were determined that he would learn to have some independence.
When it came and we placed him in it, he kept looking behind towards us, like, “Hey, aren’t you going to push this thing like you always do?” And we again acted like we were playing with him, tempting him with a new game on his iPad. He would roll it a few feet, take a few turns on the iPad and then like old times, we would move it so he couldn’t play with it unless he moved himself another few feet. After the third attempt, He looked at us with such disappointment and indignation and if he could talk, he probably would have said, “You, assholes. This again?” And he refused to play along. Smart kid. For a kid who can’t talk, he sure can communicate.
So, after weeks of trying to get him to move his wheels and him refusing, we were beginning to wonder if this would happen. The truth is that Will is smarter than us and if he doesn’t want to do something, he won’t. His will is way stronger than ours. He can stare you down and make you blink. If he doesn’t want to sleep and wants to stay up all night, he will. If he wants a toy, he will make you cave until you give it to him. He doesn’t accept bribes or the idea of “if you do this, then later we will do this…” This kind of parenting doesn’t work for a kid like Will. And unfortunately we conditioned him to behave this way because in trying to manipulate him to move, we taught him how to not be so easily played.
So, imagine my surprise when his teacher sent home a note concerned about Will’s recent “behavior” at school. He got into trouble for being insubordinate because for the last two days, he had been rolling himself out of music class as soon as he was wheeled in. He didn’t want to be there and he didn’t want to participate so he unlocked his brakes and turned himself around and left. “We didn’t know he could do this,” part of the note said.
My reply was, “Neither did we, and frankly, we are thrilled. We haven’t been able to get him to wheel himself at home or in therapy. Please understand that for the first time in Will’s life, he is in charge of his mobility so whether we approve or not, he is functionally moving and communicating which are two of his primary IEP goals.”
Of course, this was immediately followed by more ideas of intervention strategies for Will to learn to follow the rules, blah, blah, blah. My husband suggested that the music teacher improve her lesson plan and make it more engaging so Will wanted to stay. This was not met with a positive response.
I have never been so proud of my kid. He speaks the truth. Unlike typical 10 year olds who have already been conditioned to sit still and do what the teacher says even if they aren’t engaged, interested, or listening, Will, like any good activist, Will protested and walked out, well, rolled out.
I am so proud. I think he will be much more independent and higher functioning than the screamers ever gave him credit for. And now that he has figured it out…in the words of Seuss, “Oh the places he will go.”
Roll along, sunshine boy, roll along.