Tuesday, January 21, 2020

Everything we grew up thinking about kids with disabilities was wrong

A mom I met this weekend who has a teen son with Down syndrome was telling me what happened after his birth. As she sat there, sobbing, a doctor asked, "Didn't you have chromosomal testing?" We both agreed how mind-boggling awful that was, and discussed how things had shifted in recent years, with more and more women choosing to have babies with Down syndrome.

It got me thinking about how perceptions of disability have changed since I was a kid and how my Max, who has cerebral palsy, has transformed my thinking. The stereotypes—that people with physical or intellectual disabilities are helpless, incompetent, clueless, pathetic—are still around. But society is increasingly beginning to accept and understand that:

Kids with disabilities are not tragedies
When you have a baby who's born with a disability, you may struggle mightily. Our culture does not prepare parents for the possibility of having a child with disabilities—if anything, it makes you fear having a child with disabilities. Yet I grew to learn, as so many parents do, that our children may not be what we expected and they may not be what is considered "typical" but in the end, they are children who are as full of of life, love, happiness, curiosity, brightness, sugar and spice and everything nice as any children. And they are children every bit as loved as our other children.

Kids with disabilities are not happy "despite" their disabilities
There have been times when strangers have commented how amazing it is that Max is so happy, as if it is mind-boggling that anyone with cerebral palsy could be happy. It's true that Max is a naturally cheerful sort, but CP is also a natural part of who he is. While there are times when he gets frustrated because his arms or fingers don't do what he wants them to do, he doesn't feel sorry for himself. For years, when he said something and people couldn't understand him, he'd lean closer and say it more loudly. He didn't think anything was wrong with his speech; he thought that there was something wrong with other people's hearing. My boy Max is content with who he is.

Kids with disabilities have all sorts of abilities

Looking at a child in a wheelchair, some people see only a child who cannot walk. Looking at a child with Down syndrome, some people see only a child with intellectual disability. But our children are multi-faceted; their disabilities are one component of their being. They can sing, dance, make art, ace tests, perform in shows, win spelling bees and beauty pageants and athletic competitions, you name it. They just do it their way. Here's Max singing Let It Go with his music therapist. Here's Max booking at the Special Olympics race he participated in. Once you stop thinking that there is a "right" way of doing things, you can see all the abilities that exist in this world.

Kids with intellectual disability are bright
The thinking that kids with autism tend to have phenomenal recall, particularly for numerical facts—baseball stats, birthdays, phone numbers—is largely based on the 1988 film Rain Man. Only a minority of kids with autism have so-called savant syndrome. The others can possess all kinds of smarts, and the same goes for children with intellectual disability. We were told from the start that Max, who had a stroke at birth, would have severe cognitive challenges; you wouldn't know that when he reads. Math is not his strong suit; mine, either. He has extremely high Emotional Intelligence, which is more than I can say for some adults I know. He quickly perceives when someone is upset, and tries to console them. He also has an amazing sense of direction, and has let me know when I'm going the wrong way—Dave and I joke that he is our human GPS. You can look at smarts as the kind that get people into Harvard. Or you can open your mind and consider all the kind of smarts there are in this world.

Kids with disabilities can have loads of personality 
You know those people who walk around unsmiling but who, when you talk with them, turn out to be really funny? The same can go for children with disabilities: you can't figure out their personalities (or anything, really) just by looking at them. Sometimes, their expressions may seem dour, perplexed or out of it. Sometimes, they do not verbally communicate. Some kids won't make eye contact. But once you do connect with them, in whatever way, you discover their playfulness, sense of humor, intelligence and the other traits that make them who they are.  Oh, and don't mistake them for sweet little angels—they can be naughty, frustrating and exasperating. Just like any children.

Kids with disabilities do not lead sad lives
They have families who adore them, joke with them, tease them affectionately and love them up as much as—wait for it!—any child. Most things that typically-developing children can enjoy—activities, music or dance lessons, sporting events,  parties, summer camp, seeing shows, trips with their families—children with disabilities can enjoy. It may take effort to ensure that places are accommodating and accessible, or to find ones that are. Some parents need to figure out how to calm a child with sensory needs. But it is possible.

When I met that other mom this weekend, we were on a Girl Scout winter camping trip. I found out that the camp offers a family camp weekend in the fall, and asked the director how Max could join in. He walks well, but can't do long hikes or climb. "Oh, no problem, we have all-terrain wheelchairs," she replied. Maybe that wouldn't have been true decades ago, or even when Max was little, but now children and adults with disabilities could be included in hikes. I felt happy and hopeful. It reminded me how far inclusion has come in recent years. People just need to make an effort...and, of course, see the possibilities.


  1. Love this. Thanks for sharing what so many of us feel every single day.

  2. You're a beautiful mother Janelle, with very special gifts.Love you sweetheart!

    Aunt Diane

    1. Diane, you sound like a lovely aunt but I am Ellen, not Janelle.

  3. Thank you for this Ellen! You and your family continue to be an inspiration and source as we navigate this world. Because of you I am slowly putting my own fears aside and learning not to hide for my sake or hers. To be out and doing things so my others get to experience life as our unique family as much as she can tolerate and we can enjoy. Thank you.

  4. The doc offered us this test way back 16 years ago. A big ass needle that would puncture the sack just to get some amniotic fluid to test for Downs. But side affect was a possible miscarriage!! We turned it down right then. Plus some times there are false positives!?! So some people actually aborted a non DS baby! We were appalled by that. We would take our baby as is. He doesn't have DS but he has ADHD and he is on the autistic spectrum. He is very high functioning. Very intelligent, particular about food and schedules�� a few other quirky items that we find to be endearing. Even his older brother does!

  5. This is all true and beautifully written!


Thanks for sharing!

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