Learning to walk the tightrope of motherhood...

Friday, September 4, 2015

Why Walk in the Buddy Walk?

Why walk for Down Syndrome awareness?
It's Buddy Walk time! If you would like to join Mer's Bears at the Lehigh Valley Buddy Walk on Saturday, September 26, at 2 pm, sign up now!
If you're not sure WHY we do the Buddy Walk, you're probably not alone. In fact, there are times when I wonder too. Here's why I am walking this year:
I am walking for health! We are extremely fortunate that Meredith has not had any major health concerns related to Down syndrome. Unfortunately, this is not the case for many children, many of who undergo heart surgery at a very young age. The Eastern PA Down Syndrome Center helps parents manage the medical concerns associated with Down syndrome from the beginning and serves as a resource for questions and connections to therapists as developmental questions arise. We also walk because we CAN walk! Did you know that one of the major challenges children with Ds encounter is hypotonia, or loose, floppy muscles? This is why children with Ds need the support of physical, occupational, and even speech therapists (because the tongue is a muscle!) to develop skills typically developing children pick up much faster. It was not so long ago that new parents of children with Ds would be told that their child would never learn to walk or talk...and thus many were institutionalized. The early intervention of therapy (beginning as early as about 6 weeks!) has played a major role in helping kids with Ds develop these skills more much so that Meredith could probably dance her way through this walk! 
I am walking for advocacy. As Meredith enters kindergarten, in a mainstream classroom in our community school, with a one to one teaching assistant, I can't help but think we have won the educational jackpot. She is getting the supports she needs in the social and academic environment that is appropriate for her! I also can't help but think about what special education was like when I was in students with any disabilities were isolated from their peers and often not even exposed to the academic curriculum...and how their parents might have been thrilled just because they were allowed to BE in school at all. Today, we benefit from their fights, their tears, their work for inclusion in the schools and in the community. We walk gratefully for the advocacy done by previous generations and with a promise to do more for the next generation.
I am walking for community. Being a child with a disability can be lonely. Being a parent of a child with a disability can be lonely too. The Eastern PA Down Syndrome Center builds a network for families of children with Down syndrome to support each other with issues specifically related to this aspect of our lives. The other community is more important though: we are so lucky to have friends who include our family in birthday parties, play dates, dance activities, and chatter after school. If you don't know us well, yet, come join us at the walk!