Thursday, 7 February 2013

Carter's Story Part 4: A Device for Carter But Who Will Help Us?

Part 1      Part 2      Part 3

When Carter’s voice output device finally arrived, it would have been icing on the cake if he had tapped the buttons to tell us what's been on his mind all these years. Unfortunately that's not how things went. Carter would essentially be learning a new language now that he had his device. It would require a lot of practise and repetition in order for him to become competent in using it. We were going to need help, but finding support would prove to be the biggest challenge of all.  

I would soon find out that speech therapists who specialize in AAC are few and far between. It would only be through the government funded childhood development centres that we would find a therapist knowledgeable about high tech voice output devices like Carter's. Ironically, as a result of purchasing Carter's device we were no longer eligible to receive AAC speech therapy services at our local centre (read more about that here).

Throughout Carter's childhood I've gratefully accepted whatever services and professional help that's been available to him. I've done my best to work with those supporting him, but the truth is, some of the services have been inadequate and some have simply been inaccessible.

Perhaps the problem lies with budget cuts or a lack of funding for programs, or the fact that Carter has complex needs in specific areas. Or perhaps it's due to the people we've had to deal with. Whatever the reason, I've found that when asking, "Who will help us?" I've very often felt like I was a part of the children's fable, The Little Red Hen because of the answer I kept receiving, "Not I."

Carter working with his siblings & the SLPS at the AAC Inst.
I couldn't accept that answer so off we went to the AAC Institute in Pittsburgh, Pennsylvania. Carter received services there over the Christmas break and again at March break that year. The support continued via web conferencing after that, but even with the strategies and suggestions provided by the Institute's speech therapists, we were missing a vital piece to the puzzle. We still had no local support. We were at a standstill. 

Just over two years ago, my husband and I became so frustrated with Carter's school situation, combined with the lack of support around his communication needs, that I decided to research other alternatives. What would it take for Carter to be challenged academically while receiving support with his talker?

My search began within our local school board, but I quickly realized that they could not provide what Carter needed. I decided to investigate private schools and I found a few that warranted visiting.

One school in particular stood out from the rest and after sitting down with the school's administrators to hear about their mandate, about the services Carter would receive, and about the supports that would be put in place if he were to attend, I came away feeling elated by what I'd learned but at the same time feeling like I wanted to cry.

My husband's reaction after the meeting was one I will never forget. He shook his head, then looked at me and said, "Now what do we do?"

Of the schools we'd investigated, this one was a good fit, no, a great fit. We both knew it, but there was one major problem - the school's location.

Click here for Part 5 of Carter's Story: The Big Move

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