Made of Gray

Caleigh's Communication

A Letter to Caleigh on Her 10th Birthday

Raising the Rare ChildHolly D. GrayComment

Dear Sweet Caleigh, 

Today you turn Ten. You're a pre-teen now and you are so completely excited to have that title. I've spent the last month trying to convince you to stay nine forever. As stubborn as ever, you jumped ahead another year.

How is it possible that a decade has passed? I'm still trying to wrap my brain around it. You blew past early predications and continue to stretch the rules. You break barriers and will forever be our strong girl. You push when Daddy and I are tired and ready to quit. You push and survive when your body is tired and complicated. You keep everyone on their toes at all times. You made me a mom ten years ago and you continue to make me a better person everyday. 

Every time I look at your sweet face, I see my tiny fragile NICU baby. Your flowing curls, soft pale skin, and beautiful brown eyes amaze me. I see all the knowledge and wonder in those eyes. Your'e the smartest kid I know. As your mom, I feel every feeling you have. Each movement, expression and sound speaks to me more than any verbal words could reach. I feel that we are connected on a level very few understand. I know when your sick, sad, overwhelmed, exhausted, happy and excited without a single word. You are growing up so unbelievably fast, but we will always have this unwritten connection. 

Mommy and Daddy are forever proud of you. Keep giggling, sassing off and moving mountains. We love you, pumpkin.

Happy Birthday! 

I LOVE you, 

Mom

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Presuming Competence

Holly D Gray2 Comments

What would you do if you were told that your three year old didn't understand the difference between yes and no? That yes and no were too complex for a three year old to understand? You knew in your heart that she did. You daughter could blow her tiny nose on request and utter "uh uh" for no. You had a way of understanding your child so deeply that it hurt to hear those words not presuming her competence just because she was non-verbal. 

For me, this was the conversation I had with a speech therapist one cold Tuesday morning in January of 2010. I was completely taken aback, and at that point I took on a new role in my child's life. I was to work every ounce of my energy towards finding a way for my daughter to talk, however that may look. 

I went to work researching, and honed in on the upcoming release of the world's first iPad. April 3rd 2010 came and went. We used our occupational therapist's new iPad with Caleigh during therapy appointments while at the same time looking at funding options. 

One month later we took the plunge. We went to the Apple store, purchased the iPad, downloaded Proloquo2Go and started making vocabulary sets for Caleigh. The next day our three year old was telling us when she needed her diaper changed precisely when she did in fact, need her diaper changed. I cried tears of pure joy. My daughter was speaking for the first time in her life. This was life changing on so many levels. 

Her vocabulary grew with each day and week after that wonderful weekend. Not only was she understanding of so much more than we anticipated, she was ahead of the curve on many levels. 

Caleigh was featured in the Wall Street Journal http://on.wsj.com/1lk9003 in October of that same year. The article discussed funding options and issues related to the medical uses of the new iPad. It was uncharted territory then. We were on top of the world.

With all things wonderful come dips and hills. 

Caleigh's apparent physical challenges became an issue for those that wanted to criticize the iPad and Proloquo2Go as a viable communication device. Remember those days? Skeptical therapist and teachers scoffing at an amazing invention. Scared of change and afraid to think for themselves by having their own opinion. The general public loved Caleigh using Proloquo2Go. The iPad was amazing to them, but the people that we needed in Caleigh's life weren't as receptive as we had hoped. 

Public school came at age four. The people in this area believed that we, as Caleigh's parents, were "talking" for her. They were very much involved in this early skepticism, and there was no changing their minds and the way things were at the time. 

My husband and I decided to homeschool Caleigh due to many reasons, but a huge component was her communication needs. We started educating at home and never looked back. It was the best decision that we could have made. Caleigh is reading at age level, ahead in mathematics and loves history like no child I have seen. She devours books at a high rate of speed and shows no sign of slowing down. All because of Proloquo2Go. 

I trust in Caleigh's intelligence because that is my job as her mother and because Proloquo2Go gave me the tools to help her. Taking the negativity out of our lives and replacing it with confidence opened up doors for Caleigh that otherwise wouldn't have been there. Therapists that are Caleigh's best cheerleaders, doctors and nurses that believe in our girl became the positive influences that have pushed her further. 

Our local community has been an amazing piece of this puzzle. Shopping at the grocery store and having complete strangers talk to our daughter instead of about her, makes my heart smile. Restaurants are a playground. Playgrounds are left without frustration. We know Caleigh's wants, needs and feelings; which have medically helped us keep a close eye on her conditions. 

Coming up on her fourth year of using Proloquo2Go, there are still days that we struggle with positioning, medical ups and downs, mounting options and fine motor challenges, but overall Proloquo2Go has given our daughter a voice that the world didn't know she once had. A voice that grows stronger each and everyday. 

Today a portion of Caleigh's story was shared on Assistware's (Proloquo2Go) Blog and Newsletter.

You can see it here: http://www.assistiveware.com/blogs and here:  http://us2.campaign-archive2.com/?u=4901d93f301cfabb0cf41992a&id=77fb9732f5

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