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When People Say My Son With Invisible Disabilities 'Looks Fine'

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My son is 12. At first glance he looks completely typical. He’s athletic, muscular, handsome, and quick to smile. Gymnastics are his favorite sport. He was thrilled when I signed him up for classes. He’s good at gymnastics because running, jumping, and strength training come easy for him.

What no one can see is the PTSD he carries from years in an orphanage. No one knows he just learned to speak English; his accent is hardly noticeable now, but expressive-receptive language disorder presents the same in any language. Severe dyslexia that went undiagnosed and without intervention for most of his life can make reading and writing a colossal task for him. He feels “dumb” and struggles with self-esteem. I am trying to boost his self-image by involving him in things he is good at.

Auditory processing disorder is invisible, but the effects are not. It often looks like “not listening,” but his brain is scrambling to figure out what you want him to do. He wants to please, but sometimes he cannot compute what is said in what is considered a reasonable amount of time. I homeschool him now because in public school, his anxiety and fear of getting things wrong became overwhelming. He is terrified of disapproval, but could neither read nor clearly understand what was being said. The “simplify instructions” and “repeat instructions as needed” accommodations in his IEP didn’t seem to matter if he was raising his hand to ask just one.more.time. Frustrated at the lack of proper accommodations, he often had meltdowns after he got home.

“He looks fine” is a phrase I came to hate. Looks can be deceiving. He is smart, funny, and amazing, but the challenges he deals with are far from “fine.”

A gymnastic coach told him last week in front of the class, “You have slow listening.” He was really crushed by it. The place where he excels most pointed out his weakness.

It hurt me to hear that. Yes, he does have slow listening, but it doesn’t mean he is not listening. It left me angry, and confused. Do I speak with his coach? Do I ignore it?

Auditory processing disorder. Dyslexia. Expressive-receptive language disorder. Does anyone really take the time to look these up and understand what they mean besides parents? I write diagnoses down on forms, yet watch my boys get called out for aspects of their disabilities as if they are at fault.

Invisible disabilities are both a blessing and a curse. There is no parking tag, no hearing aids, no wheelchair. People with invisible disabilities blend in and are expected to act like everyone else. When they do not, the first action often isn’t to offer help, but to shame.

My daughter with cerebral palsy takes gymnastics at the same gym. The coaches are fantastically accommodating with her physical limitations. They are encouraging and push her to be the best she can be. There is no comparing her to the typical kids in her class. No one would ever tell her she has “slow running.” She already knows that, of course, just like my son with auditory processing disorder knows he has slow hearing. Criticizing a child for an invisible disability is no less devastating than if they were in a wheelchair and someone demanded they walk faster.

Parenting kids with both invisible and and physical disabilities is a difficult balance. I sit and watch as time after time, people are openly sympathetic and accommodating to my daughter who is fiercely independent, yet ignore the not-so-visible needs of my sons who just want to do well. This parenting journey has opened my eyes to many things I never knew existed. Daily, I witness the struggle of looking the same when everything works differently. Sometimes I want to explain it to the world, and some days I just wish I didn’t have to.

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Originally published: January 3, 2017
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