In my children’s school district, the school psychologists coordinate efforts for students with disabilities who qualify for accommodations under Section 504. For the uninitiated, Section 504 is a part of the Rehabilitation Act of 1973. It’s a separate entity from special education (about which I can cite chapter and verse), so I’m a little outside my wheelhouse. Plus, dammit!, it’s my kid. Section 504 prohibits discrimination based upon disability. It’s an anti-discrimination, civil rights statute that requires the needs of students with disabilities be met as adequately as the needs of the non-disabled are met. Ha!
When your kid has a physical disability, no accommodation on earth can play as a leveler. Ostensibly, 504 plans allow for equity. As an example, it would be “unfair” for my son to be graded similarly to his able-bodied peers in physical education. It might be unfair to hold him to the same time constraint for passing between classes if he cannot motor across campus in the three minutes or so allowed for everyone.
I experienced a particularly challenging evening with my number one son last night after his first day of school. Much of the evening was spent crying in my car (me) while he railed back in frustration. I was on guard at #2’s rainy/stormy football practice while on the phone trying to talk #1 through something I believe he should have been able to cite chapter and verse. I would have loved to have been home with #1 to assist, but I worried the storm might force practice to close up early–the last thing I would’ve wanted was to leave my kid, covered in heavy equipment, some of it metal, out in a thunderstorm. But in so doing, I failed #1 in a big way. Sometimes a child’s disability cuts through the dark delight of his mother’s ignorance more like a laser than others. Last night I was sliced to ribbons.
So this is how I spent my afternoon, in response to my son’s school’s school psychologist, who’d emailed me about beginning his Section 504 referral. It’s time. I’ve managed to delay this reality for more than two years. But it’s time. She needed some background information about his diagnosis and functional effects. Laying it down in print startled me a bit. I felt a small measure of clinical detachment as I answered her questions, so why were my eyes tearing up?
We were told on January 21, 2015 that he has some type of muscular dystrophy. At this time, his official diagnosis is “myopathy” which is a general term for muscle disease. He also has chorea, which is a neurological disorder characterized by twitching, jerky, involuntary movements; in him they’re particularly notable in his hands. He has undergone some genetic testing which ruled out the 25 most commonly occurring types of Limb-Girdle MD, which is the subgroup he’s most highly suspected of having, but without a full genetic panel, he hasn’t been assigned a particular subtype yet. It may be that he is one of seven or eight people in the world with another of the incredibly rare subtypes. He underwent a brain MRI in July, and that did not return a specific diagnosis. The MRI was done because the neurologist he sees felt he may be having some problems with his brain actually firing the muscles at the cortical level. MD is a progressive, neurological disorder meaning every day is the best day he has left; there is no cure and he is very likely to progress into requiring a wheelchair for ambulation. The estimate is 10-20 years between diagnosis and wheelchair. He’s 2.5 years in.
The functional results of the MD for him are weakness, discoordination, and fatigue, affecting his legs and arms predominantly. The chorea renders his hands unstable and weak. He experiences difficulty with ADLs (activities of daily living) across the board. Walking is tiring for him; he often just needs to sit down and rest. He’s extremely clumsy and has very poor proprioception—he doesn’t know where he is in space, so walks into things and people; he misjudges steps and the pressure his body needs to change positions. Regarding fine motor, he has weak grip strength, so opening bottles or using a knife or pizza cutter for example are hard, carrying a plate of food can turn south quickly. He drops things easily and often. He needs more time to maneuver the lock on his locker or grab books or other materials and when there is a time constraint, he becomes anxious and his hands tend to work even less well. He has a splint for his left (the weaker) hand which he is to wear at night to prevent muscle contracture.
He’s followed at Children’s Hospital of Wisconsin Neurology on at least an every 6 month basis, and he has periods of occupational and physical therapy depending on how he presents at clinic.
Is this a decent start?
It was sufficient, probably more than sufficient, she replied. And again I kinda wanted to cry. Acceptance comes in stages and waves for me, but the fact remains: I fucking hate that my son has MD. The previous evening’s homework/problem solving fiasco reminded me that nothing comes easily for my kid. Can’t there be just one thing that’s a cinch? Just one??
My kid’s already pissed at me from last night, when he tells me that he and his gym teacher had a little tete-a-tete about what he could do in gym right now. Completely separate from MD, my son’s collarbone is still healing from its July break, and he’s been restricted from gym class at least until September 28. I VERY CLEARLY communicated that to his principal, homeroom teacher, and gym teacher, yet for some reason the gym teacher felt a little chat with my kid felt about what he felt comfortable doing in gym today was enough to green light it. I am so far beyond pissed right now, I’m seeing stars. I KNOW he’s in eighth grade and they’re supposed to be more independent. I KNOW that his immobilizer has been removed, so he looks fine. But the thirteen year old DOES NOT DECIDE what he thinks he can do in gym when under express orders to the contrary.
On his best day, physical education is a crapshoot. This is a child who walks into walls on a fairly routine basis, a kid who trips because he can’t quite feel where his body is. Having smashed his clavicle sure as hell did not improve that condition. The 504 plan saddens me; it reminds me that something in my genetic code resulted in my kid’s being born with MD, and I never don’t feel responsible for this shit diagnosis. I did this to him. But in a quirk of timing, starting this 504 today reminds me that I have to do what is best for my kid, because no one else is his mother. Even if he is in eighth grade. Even if he is a 6’1″ thirteen-year-old.
Even if he is so far beyond pissed at me, he’s seeing stars.