Thursday, July 10, 2014

On Down Syndrome.

My friend Meriah is hosting a blog hop each week this summer, and I'm currently three weeks behind.  The topics all focus on disability as either a person with a disability, a family member of a person with a disability, or as an ally.  Instead of writing three posts today, I'll attempt to address each of Meriah's three prompts.

A bit about my friend Meriah - Her daughter Moxie has Down syndrome, so Meriah is the parent of a child with a disability, and she happens to have a disability herself.  And Meriah is going to NDSC this year for the Down syndrome conference, and I am not, so she is unintentionally making me sad, because I would love to meet up with her.

And she's super funny.  And she writes about a lot of important issues in the disability community, and works hard to connect the Down syndrome community with the disability community as a whole.

So here we go….

#1: My Connection to Disability

In college, a requirement for my major was the class Adapted Physical Activity, in which I learned how to modify physical education activities for people with disabilities.  I took that class around 1999, it was fine, and I would have put it smack dab in the middle of college classes as far as impact goes.  I remember some things, specifically about people first language and prerequisite skills, but I wasn't inspired to go and teach adapted PE or anything like that.

Later in college, I worked for a tutoring organization and provided support in several classrooms, including for special education classes and students.  I enjoyed myself and learned a lot.

Several years later, I made a career change and went into full-time teaching.  My teaching certificate is in special education, so I knew students with disabilities.

A year into my teaching career, I got the call that I would be having a baby girl…. and that she would have Down syndrome.

My connection to disability became much, much more personal.  My connection to disability is now the three year old girl who is "cooking" me chicken and corn on her plastic grill, running back and forth with her "yummy yummy" offerings.  My connection to disability is a little girl who has received disability services from birth, and who makes my world brighter.

Inspecting her goldfish at the beach.


#2: Coming to Terms with Disability

Of course, when I got the news of Ellie's diagnosis, I wasn't exactly thrilled.  Despite my background in special education, I had a lot to learn about Down syndrome in general and my daughter specifically.

I live in the most educated area in America, and education matters a lot to my family.  Come on, I'm a teacher.  I read about education theories for fun.  What would my daughter's learning look like?

The answer is that Ellie's intelligence doesn't always show up in traditional ways.  She has a lot of trouble following directions and she doesn't exactly see the need to do so.  But Ellie also has a fierce independent streak, she's a great problem solver, and she develops on her own time.

Coming to terms with Ellie's disability has meant letting go of what I want for Ellie in some ways. Instead, I've needed to consider what Ellie needs.  She will probably not be the most well-behaved child in her class.  She will likely be the most spirited.

Ellie isn't me.  Ellie isn't Matt.  She has personality traits from both of us, but she is exactly who she was created to be, with her own gifts to celebrate.  Coming to terms with disability has meant coming to a realization of what matters - raising a child who loves others, who has a faith, who contributes and brings joy to her community.

At the Children's Museum of Naples.


#3: A Letter to My Younger Self

Dear Past Self,

You will be okay.  Ellie will be okay.  Matt will be okay.

The child you pray will survive will thrive.  The little girl who makes no consonant sounds will never stop talking at age three.  The little girl who bear crawls for a year will walk and run.  She'll think she can jump.

Those things you worry about are little.  They don't matter.  And the big things?  She'll do just fine.  Heart surgery?  She'll call her scar her zipper and help put sunblock on it.  She'll give kisses and proclaim love.  She will be her own little person and you will laugh frequently and laugh hard.

She'll be a great road tripper.  You'll drive to Florida with her for fun.  Yep, you read that right.  When a friend tells you her unborn child has Down syndrome, you will not be sad for her.  You will remember the hurt, but you won't feel sad.

Your life will be good.

Quit stressing.


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