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How My Expectations Impeded the Growth of My Child With Down Syndrome

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I received a call the other day from an occupational therapist (OT) who assists Tayler, my 14-year-old daughter with Down syndrome. The phone call went something like this:

OT: “Hi! I’m your daughter’s OT. I was calling to do a quick review and update. I have been seeing her for a while now, and she’s had the same goals.” (True.)

Me: “Yeah, her teacher and teacher’s aide work really hard with her. Fine motor skills are just really tough for her.” (True.)

OT: “Well, I was going to suggest that since she still has the same goals, how do you feel about terminating services?” (Nervous.)

Me: “Oh, that’s fine.” (Lie.)

OT: “She is really an awesome girl. So sweet.” (Definitely true.)

Me: “Oh, thanks. OK, that’s fine. Have a great day.” (Silent, invisible tears.)

Tayler’s occupational therapist seems like a nice woman, but I knew what she meant. I know that doctor and therapist’s reports are necessary, but good grief, to a mom, they can be quite horrible.

When I was pregnant with my daughter at age 22, I had no clue she would be born with an extra chromosome. Once she was born, she seemed to receive a ton of services: speech therapy, physical therapy and occupational therapy. We even had a service worker from Tennessee’s Early Intervention System to help her reach milestones.

When she was younger, I can remember hearing her therapists and other people say things like, “She’ll talk when she’s ready” and “She’ll be running around and be independent in no time.”

Now that she’s 14, I don’t hear those phrases from professionals as much anymore. Sometimes I wonder what her doctor and therapists think behind closed doors. Do they feel like improvement may never happen? Have they given up on her?

It’s taken me a while, but now I realize my daughter’s lack of progress is my fault. It’s my fault because I’m still grappling with my concept of how things should be.

It’s my fault because I’ve had a hard time ridding myself of certain preconceived expectations. Society has given us this idea that any deviation off of the traditional path equates to a lack of progress or a “detour” of some sort.

There’s this idea that once we turn 18, we’re adults and need to choose a career path by going to college or getting a job. Then we have to find a place to live, pay bills and form appropriate social bonds with others. Anything short of this can be considered a “failure.”

I can’t change society, but I have to acknowledge my personal definition of “progress” needs to be stripped, broken down and reconstructed.

Before having my daughter, I imagined she would go to an awesome college of her choice, eventually marry and I would cry at her wedding. In my mind, we should be further along. In reality, we aren’t and she just may not be ready for certain milestones.

It’s my fault because I need to calm down, breathe and just relax. My inclination towards perfectionism says I need to work hard until my daughter is able to live independently and be a “productive member of society.”

My calm, rational self says my love for my daughter has no end, and my husband and I will support her until my last breath on earth.

So I’ll stop impeding my daughter’s growth by not placing my concept of progress upon her. I’ll try hard to dissolve any negative thoughts and will focus and be grateful for the simple things. And I’ll continue to be thankful for my daughter’s encouraging hugs.

And the next time I read a report on what she “can’t” do or say, I’ll try my best to combat those thoughts with reminders of previous victories.

My goal is to allow my daughter to just be.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

Originally published: May 26, 2016
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