Thursday, July 12, 2012

What I Want For Ellie.

In the Down syndrome blogging world lately, therapy has been a hot topic of discussion.  I've recently read three different posts on the issue, expressing a wide spectrum of views and all by women who respect each other.  You can read posts on Meriah's blog, as well as posts by Deanna and Michelle.  Not one to be left out, I'm jumping on the bandwagon.

A quick primer for those who are not part of the disability community, or who are not part of the disability community in the United States: Children with Down syndrome and other disabilities qualify for an Individualized Family Service Plan (IFSP) that serves families, helping them to plan the best way to teach their child with special needs.  The format of Early Intervention varies from state to state, sometimes you pay on a sliding scale, sometimes it's free, sometimes you get a lot of therapies offered, sometimes it's a one provider model, etc.

Ellie receives about two hours of therapy each week, speech and physical therapy (PT).  We are in a fortunate position of loving our therapists and case manager.  We recently dropped developmental therapy as our state moves toward a one provider model, but we love our developmental therapist, too, and she is an invaluable resource for ideas.  I've written before about doing flashcards with Ellie to help her develop vocabulary skills.  We use flashcards about 5 days a week, mostly using materials from See and Learn.  We do a lot of counting and talking about big and little.

I don't see a walking toy.  I don't.  I'm ignoring it.  I don't see it.

We received both a walker and a push toy to use with Ellie for awhile to help with walking, thanks to our awesome EI team.  Ellie thus far has no interest in either, but I hope she'll change her mind.  For now, we try, they sit in our living room, ready to be explored by little hands in hopes that Ellie will feel more comfortable with her new "toys."  She's been kinesio-taped to engage her abdominal muscles.  We're doing whatever we can to help her gain new skills.

But that's not the point.

You see, I want Ellie to run alongside her peers and play.  I want her to speak well.  I want her to do basic math and be able to travel independently via public transit.  I want her to have a job she likes, and a living situation that meets her needs and provides her with a sense of independence.  But there are other things I want more.

I recently started reading Raising Kids with Character That Lasts by John and Susan Yates.  I'll be in a summer book club with some neighbors, and I'm quite certain I have the only child with Down syndrome in our group.  One passage stuck out to me as a goal for Ellie, and for all kids, regardless of chromosomes.

"What is really important in life?  It is not education, accomplishments, material possessions, health or significance.  It is character that will sustain a child, an adult, a family."

I hope Ellie walks and talks well.  But more importantly, I want her to be a woman of Godly character.

PS. This giveaway is still open!  Win free music!

I have a green belly.

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  1. Wow, I've never heard of that tape before! So cool. This was a wonderful post, Megan. Having also been one of the beneficiaries of Arlington's fantastic EI program, I can certainly say that we made the right decision in throwing as much as we could at her to get her off on the right foot, so to speak. And your perspective is very helpful - we do need to keep things in perspective. Having a child of strong character, raising a good person who loves others, is so important.

    On another note, we had Sammi's orthotics and first pair of shoes to fit them paid for by Arlington Co., too. If they're not doing that for you, you may want to ask your PT about it. We submitted the receipts for reimbursement.

  2. Ellie is one lucky girl to have an awesome mom like you!

  3. I think you have an awesome EI. I'm amazed at how much yours does. I think it is sad that the range across states is so broad. Ours even varies so much from county to county. I think with all kids, it is such a crazy balance of teaching character, faith, gross motor, reading, etc. I think Ellie will do fine!

  4. Hear, hear, Mama! Well said! Amen! :)

  5. Loved this. Kamdyn was taped when she was learning to sit. I did t know they did it for walking. Kamdyn's belly sticks out so far it may help her to tape again.

  6. Something tells me she's off to a good start in the character department ;0)


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