Sunday, September 18, 2011

Apraxia Walk 2011

Yesterday was an emotional day for me...we headed up to another state to walk in the 2011 Walk for Children with Apraxia of Speech.  Our state doesn't have a walk, so I chatted with Sharon from CASANA and she asked if I would like to start one in our much as I would love to not have to drive an hour and 15 minutes out of my way, I don't have the time to do organize a walk.  So instead we headed up and met with over 100 other supporters at a beautiful park on the ocean.  It was comforting to know that there were other kids just like "Cha-cha" (what our proud son now calls himself - a wonderful nickname for the blog instead of "Little Man").  There were parents, siblings, and family members there who had been through the same stuff like us - the testing, the waiting, the therapy, the tears, the cheering, the tantrums, the questions...very overwhelming.

We had some wonderful family members there to help support our "Chatterbox" team - Hubby, Bee-bee and Cha-cha, Nana-bee, Great Auntie J and Uncle P and their dog, Pepper (or Pep-pep as Cha-cha calls her), Gramma and Grampa K, and Auntie K and our cousins V & E.  It was great that they could all join us!

At the beginning of the walk, Cha-cha grabbed my hand and started off...and a beautiful monarch butterfly flew over us and that's when I pretty much started to lose it...butterflies and bees appear at very random, yet significant times of my life (I'll never forget seeing a bee in Bee-bee's nursery a week before she was born - in December, or having a bee go up my veil on my wedding day and to have a butterfly land on my wedding bouquet an hour later)...of course I would lose it again at the end when they read the book, "My Brother is Very Special" - I book written from a sister's point of view about her younger brother with CAS.  Hearing about how kids don't want to play with him because he can't talk, hearing about the obstacles the brother has to face - like other kids taking away toys because the brother can't tattle, going to therapy instead of football practice - this is the long road ahead of Cha-cha. (Although secretly, I'm excited that this could coincide with football and he won't be able to play)  It was good to hear from other parents who are also working through their struggles of accepting and dealing with CAS.

The mile walk itself was pretty uneventful - lots of bright orange shirted big and little people walking, running, biking, riding in wagons and strollers, going around a beautiful common by the ocean.  Bee-bee pushed her stroller with her baby Jewel and Cha-cha pretty much walked and ran the whole thing with only a short neck and shoulders hold-y from Daddy.  I think his favorite parts of the day was collecting rocks, going down the twirly slide and digging in the sand.  I don't know if he knew we were walking for him, but later on in the day, I asked him my routine of questions..."Who's mommy's boy?"  "Me!" he yells..."Who does mommy love?" "Me!", I glanced at hubby before asking the question I've never asked before and asked Cha-cha, "Who has Apraxia?" and he beams and yells, "ME!" 
Cha-cha walking - he wanted to show off his new digger shirt instead of the Apraxia orange one :)
A touching moment for me was observing the mothers of the children with CAS.  Despite the fact that their child has difficulty speaking, the mothers are very in tune of what the child's needs and wants are...I met other mind readers like me!  One of the coordinator's son, who has CAS, was fussing and someone called out, "What's wrong?" and she knew that the little bit of marker on his hands were bothering him.  Another mother who was speaking in front of all of us just glanced over to her son and said, "Can someone please take him to the bathroom?" into the microphone.  I don't want to take away from the fathers or other supportive family members - but mothers always have a sense of intuition - even if your child doesn't have a disability.  Thankfully, that intuition kicks into high gear when you have a non-verbal child and you start to possess that mind reader-rockstar quality to the 10th degree.

It was a beautiful day...I appreciated spending time with our family, taking in the fresh air, and seeing other families just like ours. 

Thank you to all of you who made donations on our walk page - I was actually the third place "winner" of the most donations...the Chatterboxes were the 4th place team over all!  CASANA will use most of that money to train SLPs, public schools, and other professionals about Apraxia and how to help treat children who have it.  Sadly, many SLPs do not have the proper training in the techniques to help children with Apraxia.  CASANA hopes that not only can we find a way for kids to not have apraxia, they also want people to be educated about it and know how to treat it.  Thank you for your support.

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