Arthrogryposis Awareness

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So yesterday (June 30th) was the first national Arthrogryposis Awareness Day! To show support, people were asked to wear blue! I loved how my facebook newsfeed turned mostly blue in the course of one day. :) We want to say a big THANK YOU to all of our friends and family who either wore blue, forwarded the arthrogryposis awareness flyer or helped other people pronounce the condition in the first place! :)

Arth = like the beginning of the name “Arthur”

Ro = like row row row your boat

Gry = rhymes with “cry” unless you’re lazy (like me) then it’s like “gra”

Pos = like to “pose” for a picture

Is = like the word “is”

So everyone all together now, Arth Row Gry Pose Is!

Yay! Give yourself a hand! Or you can head bang if you can’t use your hands!

The day of awareness was chosen because June 30th was the day, several years ago, when the support group for arthrogryposis multiplex congenita (www.amcsupport.org) was founded by a mom who had a gorgeous little girl with, surprise, AMC!   Back then there was no major support group. So I count my lucky stars that by the time Laelia was born we would be blessed over and over again by the wisdom and encouragement of this group!

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Laelia is wearing blue for Arthrogryposis Awareness Day! (The party stuff was for Tom’s 60th birthday the same day! Note the Thomas the Train party decorations! :))

In the same vein of awareness, we did our first ever meeting for Laelia’s IEP (individual education plan) last Tuesday afternoon.   From everything I had read on how IEPs can be frustrating, terrifying or depressing I have to say we had a good experience. We went into our meeting trying to think of what Laelia would need in the form of special assistance at school. All we could really think of was that she’d need daily stretches, lots of assistance eating and some help getting places. But the experts knew better and started to throw out things I had not even considered. Changing her clothes for one thing or getting on the potty for another thing.

And the child is so darn willful! I have NO IDEA where she gets that from. (Tongue in cheek. :)) But they all recognized that fact, and how that affects her willingness to use adaptive equipment, and were willing to work with Laelia just how she is, willfulness and all! :)

The biggest concern I had going into the IEP was that my daughter would be reduced to “the disability” or “the problem student.” But that wasn’t the case at all. Yes, she’s disabled and, yes, I had to face that when going over the ins and outs of how her day would be different than the typical student, but it wasn’t thrown in my face. I really am getting excited about the possibility of her going to Head Start next year and just imagining what she’ll learn and do.

We didn’t sign the IEP since it’s not finished. We’re still trying to figure out how to get her daily stretches for all those pesky joint contractures done at school. I’ll probably be training a volunteer or aide for that. But I’m very positive that she’ll thrive. And that’s so important to me.

And a big thanks to Renee (her teacher) who played with her and distracted her while the adults talked shop. :)

2 Responses to “Arthrogryposis Awareness”

  1. Robin Clark says:

    As a Service Coordinator for the Regional Center, I attend a fair amount of IEPs. Usually (unless there are major behavior problems) I have always found them to be meetings that “accentuate the positive” of the student. Most of my students have some amount of cognitive deficit as well, which Laelia certainly does not!

    If you ever do feel that her needs are not being met, there is usually one (or more in a highly populous area such as San Diego) SELPA (Special Education Local Planning Area) Advocate that will attend the IEP with you. This person is knowledgable about IEPs, education law in regard to special education, etc.

    She is just adorable singing to her dolly!!

    Blessings,
    Robin Clark

  2. Crystal says:

    I never knew there was a support group and now a national awareness day. That is great news! My son was born with the disease as well. Now he is six and doing better than ever expected but is very limited physically. Can’t wait to join in next year and wear blue for support. Sooo glad I found out. — Crystal

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