I Have a Message for All My Son’s Labels


Dear Down syndrome and autism,

I love learning new things.

When I found out about you, I took on the challenge of learning everything I could about each of you.

We’ve been on this journey together for 21 years. First, I read everything I could find on Down syndrome. Some things didn’t seem to fit, but then the autism was uncovered. So I started learning about autism, but that didn’t quite fit, either. Then I found out Down syndrome and autism could exist together, and it became a whole new ball game.

Somewhere along the way while I was busy learning all these things, my younger son was calmly and steadily teaching me something much more important. I learned that you, Down syndrome and autism, are just labels. Now, labels are practical and helpful: hot, cold, danger, stop, walk, don’t walk. There’s nothing wrong with labels — for things. But when it comes to people, labels don’t fit.

That’s what my son was teaching me about you, Down syndrome and autism. You’re nice, helpful labels that point me toward research, advocacy and finding appropriate services for my son. But, no offense — you’re limited. You can’t describe my son. His name is Joe. He’s a unique person. Down syndrome and autism describe him in the same limited way blue eyes and 5’3” describe him. That description helps you pick him out in a crowd, but it can’t tell you who he is.

Joe.CU.2

But I do want to say thank you for all I’ve learned about you both. Learning has made me a better advocate. When I talk to new parents meeting you for the first time, I always share what my nonverbal son told me: “Look beyond the label. See me.”

Sincerely yours,

Barbara Carson

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

TOPICS
JOIN THE CONVERSATION

Related to Down Syndrome

The Choice I Make When I Start to Compare My Special Needs Journey to Others’

I’m constantly overwhelmed by what my son’s future will look like. He requires daily emotional and physical work like I’ve never known. Now, this is no pity party; I’m forever grateful for my son’s life, and I know parents that carry a much heavier load than I do. But I guess that’s where the story begins… There are [...]

We’re Facing Autism’s Challenges the Way Our Favorite Team Faces March Madness

Last week I was challenged to answer this question: “If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it?” My first thoughts? “Expletive you.” (“You,” being as a personified version of autism). “Expletive off.” Let’s be honest, though. I’m not the cursing kind. [...]

I Took This Photo for My Best Friend’s Family. Then I Found Out Why.

Dear breast cancer, You’re a bully. You walk around like everyone is afraid of you. You think because you’re unpredictable everyone will cower in fear. Sure, you’re scary now, but your days are numbered. There are teams of researchers across the world funneling thousands of hours and millions of dollars into curing you. What will [...]

This Mom Is Creating a Documentary That Asks What the Future Means for Teens With Autism

Melissa Collins-Porter is a filmmaker and film studies professor in La Costa, California. Her son, Liam, is a 14-year-old high school student with autism. Liam lives a fulfilling life at home with his parents. But what will happen when he turns 18 and finishes high school? Collins-Porter set out to to help answer the question on her and countless other [...]