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To the People Who Ask If My Child Is 'High-Functioning'

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It happens every time my daughter’s Down syndrome is brought up. The intent behind the question is almost always well-meaning — but it still gives me pause. I don’t know how to answer the question.

She has her strengths and her weaknesses, just like anyone else. She works harder than most people I know on a daily basis. 

How would you classify my other kids? If one were struggling in a subject, would it somehow make them less of a person? Am I high-functioning? Are you? Does it even matter?

What if I came out and said, “She’s low-functioning.” What would that do for her? What would be assumed? That it doesn’t matter how she’s treated? She’d be treated as though she were incompetent in all realms, and most likely, not even given a chance to try something new, because there would be assumptions that she wouldn’t catch on, she wouldn’t know how. I believe I’d be giving permission for everyone to sell her short before she even had a chance. As a mother, I can’t do that to my child.

Author's daughter riding a toy bike.

My daughter is prone to fits and tantrums when she doesn’t get her way. She has hit her siblings, and bit them, just like any toddler. I have already been on the receiving end of confused and even dirty looks for scolding her and making her give a hug to say sorry, as well-meaning people try to brush it aside and make excuses for it by saying she doesn’t know any better. It’s sweet that they’re willing to look past these behaviors and beyond to my beautiful daughter, but it’s also misguided.

That poor little girl who is too “low-functioning” to “know better” will one day be a grown woman, and if she isn’t held to the same standards of behavior as anyone else, what kind of woman would I have raised? She may not understand entirely yet, but she’ll never learn if she isn’t taught.

I understand that a lot of people equate functioning with level of independence, and they worry for me, that I’ll be caring for a child forever. Maybe she’ll live at home forever, and maybe she won’t, but rest assured, my children are my children forever, regardless of where they are. I know adults with Down syndrome who live in their own apartments at 22, and I know typical adults in their 30s who still live at home with their parents.  I have no guarantees that my other children won’t either. I have yet to meet a single person who has grown evenly across the board and never struggled in an area, be it academically, athletically or socially.

Still, it seems we hold people with intellectual disabilities to a different standard than we hold ourselves. Why do we allow ourselves the time and room to practice and get things right, but when it takes someone with an intellectual disability longer, they are written off?

My daughter knows a lot of signs, and her speech is awesome. She’s not anywhere close to walking; she’s happy to crawl to get around. She loves baby dolls and Fisher Price Little People. She loves hugs and kisses. Her favorite song is “Itsy Bitsy Spider.” She is “functioning” just like anyone else. Down syndrome doesn’t mean she’s broken, but when you ask, it’s what you imply. It’s just another label, blocking the view of a wonderful child.

Instead of asking, if you’re curious — spend some time around her. Watch her. She’ll blow you away.

Author's daughter with food on her face

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Originally published: November 13, 2015
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