When you ignore my son’s invisible disability, you ignore my son.
Written by Jackie Linder Olson
Sometimes when your child’s disability is invisible people don’t see the magnitude of how simple things can affect our kids in a big way. With autism, sensory processing disorder, and severe anxiety, my son’s kryptonite is PE. Yes, physical education. He will stress about it all summer, perseverating on what they’ll have to do in each upcoming year.
People running towards him.
Kids yelling at him.
Being made fun of for not understanding the game rules.
Flag football, dodge ball, any ball.
The list goes on, and it sucks.
Since he has absolutely no interest in sports, it’s a daily hour of torture. Add changing in a locker room, and you’ve pretty much described his idea of Jr. High Hell. He does not qualify for special education PE, and regardless of IEPs or 504 plans, there seems to be no way to remove physical fitness from his learning experience. Believe me, I’ve tried.
This year, we learned that if he took over ten hours of dance at a private studio, which is his obsession, he could take Independent PE. This means he could get out of school early and skip running the mile in 100 degree heat altogether. Hallelujah. I transported the Independent PE form required from the school to the dance studio with the speed of an Olympian racer passing the baton.
The form sat there for weeks. It was visible on the Studio head’s desk with all the other junk mail and parent requests. I called. I stopped by. And still the form stayed empty. Blank. Haunting me. I didn’t want to badger, but the stress started escalating with my son.
“Do you have the form?” He asked for the 596th time in July. He thought about it constantly. By the beginning of August, he was in full panic mode.
“What if the form is never filled out? I’m going to die.”
The pacing started, then the rocking. The nail biting to bloody pulps.
“How can I help get the form done?” I asked again. “Would you like me to call your insurance for you?”
“No, we will do it this week for sure” they smiled, completely oblivious to the turmoil they were causing.
“You’ll have it Friday.”
“Monday,” she sang.
“We’ve misplaced the forms. Do you have another set?”
“Wednesday! We promise!”
More smiles as I gritted my teeth.
Meanwhile, my son paced his feet raw. Panic set in, and he frothed like a rabid dog. I debated medication for the millionth time, but
why when I knew he’d be fine once we got the forms.
I vowed to teach him to meditate. I’d talk him off the ledge.
As school registration approached my inner mama bear started to growl. I wasn’t asking for special treatment. This is a service the dance studio provided that I paid for, and it wasn’t cheap.
Fill out the form!
The next day I stood in front of the other moms at the dance studio, refusing to budge.
Fill out the form!
I called. I texted. I sat in the studio. Fill out the form! I felt myself turning into Aurora from Terms of Endearment. I wanted to scream, “Don’t you realize my child won’t sleep at his dad’s because he’s so stressed that he’s puking at night? He has stopped eating and is in full meltdown mode. Please, for the love of God, just pick up the pen and fill out the form!”
Then, the studio head went on vacation. My head spun three times and fire came out my ears.
If only people realized that my son was critically impacted for weeks over something that was so easy and effortless to others, like filling out a form. I wish they knew how much overlooking this impacted our lives. A simple, one page form could make all the difference in his world.
We finally received the form three days into the new school year. All is well. There will be no PE this year. His anxiety is at a manageable level, he’s eating again, and he feels good. It only cost me a small fortune to pay for the 10 hours of dance monthly, so I’ll work overtime. It’s worth it for his peace of mind.
This was one problem I could fix, now there are only 1,435,763 that I can’t.
Invisible disability awareness is greatly needed. In 2014, the CDC estimated autism prevalence to be 1 in 68 children (1 in 42 for boys) in the United States alone. The SPD Foundation estimates that 1 in 6 children are impacted by Sensory Processing Disorder. The ADAA lists that 1 in 8 children are affected by anxiety disorders. We have to keep shouting until we are heard.
Who is with me?
Who needs to fill that form out for someone, too?
No, stop everything and do it. Now!
As a mother and an advocate, I’ll keep using my voice to explain how something as simple as a form being filled out can deeply affect our children with invisible disorders.
You can make a difference. Be aware. Be kind. And please, fill out the form.
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About the Author: Jackie Linder Olson is the co-author of book series Sensory Parenting, and author of The Waiting Pool . Jackie blogs at peaceautismandlove.com, primarily about sensory processing issues, raising a teenager with autism and on mindful parenting. Prior to Sensory Parenting, she created an award winning series of instructional occupational therapy and sensory integration DVDs with Britt Collins, OTR/L for parents, teachers and caregivers of special needs children. Find her on Facebook.