Confessions of a confused special needs parent

When a child has “special needs” he/she is not the only one who gets a label.  Suddenly, the parents are “special” too.

You’re expected to be so many things: teacher, therapist, advocate… the list goes on and changes from day to day.

“Special needs parent” can be a heavy identifier.

One of the good things about that label is that with it comes an entire extended family.  If you chose to, you can reach out to others who are traveling the same road and share the trip.  If you’re lucky, you’ll find a few fellow travelers that understand where you are and are willing to help you navigate.

Belonging to a community doesn’t mean that you’ll always agree.  In fact, we’re usually each other’s harshest critics.  But, when someone within the group suffers an injustice, we’re usually the first ones to rally around and offer support.

For example, when Ethan Saylor was killed, other parents in the Down syndrome community were there to help.  We all wrote letters, made phone calls, and spent countless hours on social media getting the word out and supporting the cause of #JusticeForEthan.

Part of the reason why we did this is because we could identify with Ethan’s family.  We could empathize with them.  It was easy for us to imagine a similar tragedy happening to someone we love.

Earlier this year I heard some shocking statistics.  I was devastated to find out that life expectancy for people in my community was based on the color of their skin.

Mortality associated with Down's syndrome in the USA from 1983 to 1997: a population-based study

At first I didn’t think it was true.  Special needs parents are used to taking statistics with a grain of salt.  After all, when my son was born, doctors were still telling parents that their children with Down syndrome would never learn.  Back then (27 years ago) my son was only expected to live to age 35.  Or at least that’s what I thought.  It turns out, if the doctors had realized that my son was bi-racial, they may have warned me that he wouldn’t survive to be a teenager.

After doing my own research, I found out that the numbers were legitimate.  The study quoted was a decade old, but since then, no one had tried to discount or explain it.

Naturally, I expected my extended family to be equally concerned about the news I’d heard.  I held my version of a family meeting – I wrote about it in my blog.  Certainly, or so I thought, as soon as other parents heard the news, they’d rally around and help me figure out what was going on.

That didn’t happen.

Yes, a few people were sympathetic.  A few were outraged.  A few passed the information on to alert other parents.  But for the most part – there were crickets.

I continued my own research and reached out to a few experts.  The news didn’t get any better.

I was stuck being afraid by myself.  I had lots of questions and no way to get answers.  Why? What could possibly explain the data?  Is there something I can do?  Have the national organizations been working behind the scenes to change this?  Why hadn’t I heard this before?  None of the other parents I told had heard it either.

Last month, I finally heard someone say something about it.  Supermodel Beverly Johnson mentioned the statistics in an interview.   She’s used to stepping out on the ledge by herself; she was the first woman of color to be featured on the cover of Vogue.  Now, she was standing up for her first cousin, and her niece who have Down syndrome.

“There’s a remarkable disparity between children of color who get Down syndrome — life expectancy is age 23 — and non-black children with Down syndrome — life expectancy is 63 years old,”

I had hoped this would be the spark that would start a bigger conversation.

I wrote again.


I started a petition.  In it, I asked four of the national Down syndrome organizations to help us address the issue.  My main goals were 1) to find out what had been done to address this since the data was published, and 2) to let them know that the parents who signed the petition were ready and willing to help.

So far, we’ve gotten 60 signatures.  My slice of the community, who usually “gets it” when it comes to injustice, wasn’t moved.  For some reason that I don’t understand, the community of “special needs parents” who want so desperately for their children to be accepted as full members of society don’t seem to think this issue is worth talking about.

This isn’t just about free appropriate education.  We’re not talking about access or savings accounts.  It’s even bigger than people in our community being locked away in an institution or a sheltered workshop.

We’re talking about life and death here.  We’re talking about half of our “family” living half as long.

Down syndrome doesn’t discriminate.  It affects each race equally.

Special needs parents have fought long and hard for so many things – why not this?

I don’t get it.


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