Disabled or Typical – The Balancing Act

Boy with Hemiplegic Cerebral Palsy Riding BikeLet me be clear. My son is fine. And if you don’t believe me, ask anyone around me.

“Your baby had a stroke? Really? Thank goodness it didn’t really affect him!”
“Well, you can hardly tell he doesn’t use his hand, I never would have noticed if you didn’t point it out!”
“I’m sure any classroom would be able to meet his needs, frankly I’m stunned you even need to have an I.E.P.* at all.”

And, even after three and a half years of getting these comments from the most well-meaning of people, I still don’t know how to react. I feel like I’m caught somewhere in between, the Not-quite-as-special-Ed program if you will. In this balancing act of selling him as capable when I’m listing his achievements to his clinical therapists, all of the accomplishments and progress we’ve made since our last visit, and pointing out his limitations to his teachers and our insurance providers as I try to make a case for including him in the Early Childhood classroom or begging them to cover any of his therapies. Is he truly a special needs child? Does he deserve to be included in that program or can I trust that the parochial school my daughter attends can also meet his needs? Do I even know what his needs will be at that stage of his life? That’s the most frustrating part for me. I’m extremely optimistic that he will be able to dress himself someday, to button his shirt, his pants, on his own. To someday cut his own food using a knife and a fork. To someday drive his date to prom. But he’s 3 and a half, and all of those somedays seem to be really far away right now. I struggle, trying to parent the child I have, the toddler, and not the child I’ll someday have, but it’s a constant struggle for me. Made worse, or at least emphasized but the idea that I have to constantly, and repeatedly, advertise that he has a disability.

He can walk. During the summer, he’s really only barely wearing his orthotics. He falls a little more when he’s tired, as his scraped knees can attest, but he’s three. And it’s summer. And most three year olds have scraped knees in the summer. He can pretty much do anything you ask of him, he just does it with one hand. He does it with such efficiency that you may not even notice it was one-handed. He can carry plates, books, the ipad, just like a server would carry a heaping tray of plates, carefully balanced as he walks over the pillow fort his sister left in the living room. He wedges things under his right arm to open them with his left. He throws. Everything. Mostly at his sister. He talks nonstop. Dramatic stories full of battle and laughter. He loves knock-knock jokes and cracks himself up. He laughs. He is everything I hoped for.

And yet…every night, we work on increasing his core strength and lengthening his muscles. Every night we fight the increasing spasticity and tone in his right hamstring with full body stretches until we can’t fight it anymore. Then we go in for Botox, he gets 12 injections in his tiny body every six months or so, and start all over. We think about everything differently, forcing him to choose his affected side to shoot those “angry birds”, hold the book open, give us a high five. We have a steady string of exercises that are part of our routine, and are vigilant about making sure nothing is falling through the cracks. (Well not that vigilant I guess, our last clinic appointment she pointed out that his SMO** was cracked down the middle. Lord knows how long it’s been like that.)

So that’s the thing. Could he attend school with his sister? Sure. But the kindergarten classroom is on the third floor and stairs are tricky for him, especially when he’s tired. Could he be part of a totally mainstream classroom? Absolutely, and he should be, but please recognize that he’ll likely need more time for things like putting his boots on when going out in the snow for recess, or getting his homework out of his backpack. He’s so capable that right now he’s a placeholder, and his teacher is extraordinarily transparent about that. They have the ability to serve X students, and hadn’t reached that number, so are happy to include Henry. Should a needier child arrive, he’d be the first to get bumped. In spite of the more than $10,000 in annual health care expenses, he may never qualify for any kind of additional insurance based on his disability (like Medicaid or SSI). We’re playing this balancing act. That of the typically developing, cognitively normal but still special needs kid.

Our insurance company denies us Physical Therapy (PT) and Occupational Therapy (OT) because it’s deemed “developmental” and not related to an injury. Should he be more disabled, and qualify for Medicaid, those services would be covered. We go to clinics (Gait Clinic & Cerebral Palsy clinic) that are covered by insurance, and are told that we are missing a step, we’re just getting evaluated and don’t have the ongoing therapies on which they are evaluating us. Like taking the test every six months without studying the subject matter. Henry qualifies for OT through the school district (he was denied PT because he’s ambulatory (can walk), and can do the things asked of him on the evaluation—he just does them with one hand), but the OT is only provided while school is in session. We benefit greatly from having him in the Early Childhood classroom as they incorporate lots of PT, OT and Speech Language Pathology into their everyday activities, but we could never afford them on our own. We couldn’t afford them should a “needier” child come along and Henry get bumped from the EC program.

The irony that as parents of children with hemiplegia we are constantly unstable, dependent on services we only barely qualify for with our fingers crossed that getting into ”the system” is going to keep us in “the system” is not lost on me. As Henry teeters down the road with one hand on his bike, pushing with all of his might on his left leg as his right goes through the motions, hoping to ride the momentum long enough for the left to pick up his slack I wonder how far we can push, how long we can go, before someone brings all of this to a screeching halt.

Note from the Founder of CHASA and Hemi-Kids:  Unfortunately, Beth’s story is a very common one. CHASA was founded because so many children who have hemiplegic cerebral palsy or pediatric stroke do fall between the cracks. It is difficult for parents and later for young adults to make those very complicated decisions about whether to enter the system (Medicaid, Supplemental Security Income (SSI), Department of Rehabilitative Services, etc.) to cover much needed therapies, surgery, medications, and workplace modifications or not to enter the system and risk catastrophic medical costs, inability to work a full time job, and costly workplace modifications. There is a need for a system which will bridge the gap for these individuals who do not fit into the “typical” or “disabled” world.

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Article written by Beth. Beth is a mom of two, Charlotte (7) and Henry (3) in a small town in rural America. Henry had a stroke in utero and as a result has Cerebral Palsy and Right sided hemiplegia. Beth still regularly Googles how to correctly spell Cerebral Palsy. She would describe her parenting style as somewhere in between desperately hopeful and cautiously optimistic, and is tremendously excited to blog about her parenting adventure on CHASA.

*IEP – Individualized Education Plan
**SMO – Supra-Malleolar Orthosis (a foot brace)