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Down Syndrome Awareness Month Was a Bust. Now What?

posted Thursday November 2nd, 2017



Down Syndrome Awareness Month was a bust this year. For Sophie and me, anyway.

Okay, that’s not exactly true. In a lot of ways, October was a terrific month, particularly when it came to educating others about Down syndrome. I got a piece published on the New York Times parenting site, and I traveled to California to speak to several English composition classes at Taft College. The month was bookended by two performances by Detour Company Theatre, the musical theater troupe Sophie is a part of; she traveled to Tucson and Tempe to perform in “Beauty and the Beast.”

And a letter I wrote on my blog to to the teachers, staff, and students at Sophie’s high school got great response — shared all over Facebook and republished on The Mighty, a high-profile site devoted to issues surrounding disability.

But Down Syndrome Awareness Month was a bust because as far as I can tell, no one who mattered — no one at her high school — read the letter. (You can read it here.)

I emailed it each of her teachers, the principal and the district superintendent. I Xeroxed copies for Sophie to hand out to classmates. It’s possible, I suppose, that someone associated with the school has actually read it, but not a single person has said so.

I had high hopes. The principal (I really like her) was kind enough to call to let me know she’d received it and that the public information officer for the district was going to send it not just to staff at Sophie’s high school, but to everyone in the district.

A few days later, I received a note from the PIO. (I really like her, too — our paths crossed years ago when she had another job and I was delighted to learn she was working for the district where Sophie attends school.)

She wrote:

“I didn’t end up sending the blog out to all of our staff. I am SO SORRY. I love the writing but I explored your site and some of your blogs use one of my favorite words – the one that starts with f and ends with k. I would be read the riot act if a teacher found that and I had sent it via the district newsletter.”

I get that. That’s why I Xeroxed the letter itself separately for Sophie to hand out. The note continued:

“However, I did write this about you and another mom that I recently interacted with and included it in my staff newsletter. xoxox”

This is what she wrote:

[IN] my World

As the parent of 23-year old daughter, I struggle with my role in her life. I still want to protect and teach as I did when she was little, but being the parent of a young adult requires that I limit these actions. So, when I recently interacted with two parents in our district who reminded me of an important role that a parent must play, I took this experience to heart. Their passionate efforts to advocate on behalf of their children reminded me of the advocacy role required of all parents, no matter the age of the child. I have already used their example to be a better parent to my 23-year old. And, the next time I take a call from an upset parent, advocating on behalf of their child, I will use my experience with Lorie and Amy to also be a better public school employee.

As I told her in my reply, that’s a lovely sentiment and I really appreciate it.

But it doesn’t do anything to educate anyone at Sophie’s school about Down syndrome. I thought about making more copies of the letter and bringing them to the principal and asking her to hand them out — I even told the PIO that’s what I intended to do (she never responded) — but (and this is not really like me) I lost steam and never did it. October ended. Down Syndrome Awareness Month is over.

Of course, as I’ve always been fond of saying, it’s Down Syndrome Awareness Day every day in my house. I’ll regroup, I’ll figure something out. (And I’m open to suggestions.) It’s too important to give up.

In the meantime, for better or worse (some days are definitely worse, high school has proven to be a challenge so far) Sophie is educating everyone around her.

And I take comfort in the fact that she’s the best teacher.

I know that, because she is mine.

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4 Responses to “Down Syndrome Awareness Month Was a Bust. Now What?”

  1. Beautiful letter. Well-shared sentiments. I am with you friend. You are making a difference — even when no one seems to hear. You are.

  2. it’s never enough . . .the hearing, the understanding, the open hearted wanting to know, nor the love of peers .(we so desperately want for our kids) .never enough . .Somehow – in a very cactus like world – we need to make do with what is and keep ourselves growing, healthy, full of mystery and fully self sufficient . .I’m proud of your Sophie and so proud of your Anabelle . .who they are is just fabulous . . that people don’t recognize this month or last month sounds pretty normal . . we’re just now recognizing we can’t let our whole country fall apart. Keep fighting Amy . . your pebble”s ripple effect informs the world. Sophie’s pebble’s ripple effect reaches out to touch the hearts of us all . .

  3. So no-one read the letter and the six points?

    Dommage, dommage!

    And could there be a non-swearing version?

    My response:

  4. It’s so easy to feel as if no one is listening, and to lose hope. Don’t lose hope. You and Sophie have made a huge difference and educated so many — with your book, with your blog, with all of your efforts. Even if no one has personally responded to the letter, I’m sure that doesn’t mean no one read it. Just today I read an article I loved, and I emailed it to several people to share it, but I didn’t post an online comment. I bet you’re reaching more people than you think.

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