We all know that in the United States under the American Disabilities Act, children have the right to a public school education.
Many of us also know that what makes or breaks the success of this initiative is teachers and administrators. Some fight rules. Some hit the letter of the law but begrudge and guilt-trip. But others embrace their jobs as teachers and try to help students having a hard time to the very best of their ability.
This blog is for them.
My son’s migraine disease came like a hammer blow. He’d been completely healthy – like no absences – all through elementary school. The chronic nausea started in middle school. He left early sometimes, but his doctors eventually decided that his illness wasn’t contagious, although it might be caused by anxiety, and he wasn’t required to go home if he vomited. But things were mostly okay.
And then the migraine and pain came out of nowhere. April he had his first migraine attack – five days of sensitivity and blinding pain. By June he was experiencing them twenty days a week. By the end of the summer it was almost 24/7, with sound and light sensitivity, constant nausea, and shivering in the dark.
We were more than lucky to be near some of the best treatment in the world – thank you Drs. Rothner and Benore of the Cleveland Clinic. But the best treatment doesn’t fix an intractable disease. Not immediately.
And September marked the beginning of school.
And here is where I thank his teachers.
My son’s rehab program was what pain rehab programs are – working towards maintaining and improving functioning in the face of an onslaught of pain. It’s what the 1step2life app is designed to support.
Continuing to function through pain helps in three ways:
- It stops the muscle atrophy and increased pain that just comes from being in bed and not moving. They used to call it ‘invalidism’ – being bedridden makes you weak and tired and dizzy. Your body is meant to move. It hurts when it doesn’t.
- It retrains your brain. Chronic pain occurs when your brain interprets normal, non-threatening input as harmful and damaging. It ‘reads’ sunlight as a burn or normal sound as a damaging blast. There are more technical ways of defining it, but I think of slowly returning to functioning as teaching your brain that you are safe. Regaining its trust in the world. What you are certainly doing is developing reinforcing pathways other than those that register pain.
- It keeps you involved. Being bedridden is boring and isolating and all studies of adolescents document that being alone puts you at risk for depression. Getting up and out helps distract you from pain and builds your joy.
But it’s not easy to go to school in pain. Sometimes it would take hours for my son to get there – hours for me, for him, and for my husband. He almost never came home early, but he often was physically, but not mentally, present in class. All his attention was on not screaming from pain.
And this is where I thank his teachers. At his first 504 meeting, all of his teachers, the principal, and the special ed coordinator were there. I handed them a two page explanation of where Sean was. What migraine was. How it affected him. What problems he was running into in school.
I had requests. They had even better suggestions for meeting his needs.
No one questioned how sick he was. They’d seen him – it was obvious he wasn’t faking. They respected his trying. They talked among themselves about how he looked.
They followed through. They thought of alternative ways to help him pass – barely pass – his classes and his required tests.
They helped him limp across that finish line.
And I will always – always – be grateful for that.
Check out the 1step2life app!
Start where you are. Set your own goals. Take back your life. A tool for tracking goals, emotions, and success, not just logging pain. And the only app that has a mode specifically for parents, partners, and other carers that supports effective coaching and strong relationships.
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