Thursday, 30 August 2012

The Little Red Hen: Special Needs Version

Once upon a time there was a boy named, Carter. Things that came easily to other children did not come so easily to him. He did not develop speech in the way that other children do. Instead, he learned to communicate using gestures and sign language.

One day, after 3 and a half years of waiting, Carter came off a very long waiting list and was eligible to receive services in augmentative and alternative communication (AAC) at the local children's development centre.

He was prescribed a high tech voice output device and his family was very happy that he would finally have a voice.

"Who will support my son in learning the constructs of language so that he can become a competent communicator with his speech device?" his mom asked.

"Not I," said the speech pathologist at the local children's development centre. "I am here to help you obtain a device for your son. Then I will provide some basic support with device programming but because our waiting list is so long your son will then be discharged from our services and his school will be responsible for supporting his communication needs."

When Carter went to school that fall with his talker, his mom had a meeting with the school board speech pathologist and the classroom teacher to talk about how excited she was that Carter finally had a voice output device. She provided lots of information about the device as well as suggestions on how Carter could use it during class activities. Carter's mom remembered that a communication disorders assistance (CDA) had worked with Carter the previous school year so she asked,

"Who will support my son in learning the constructs of language so that he can become a competent communicator with his speech device?"

"Not I," said the school board speech pathologist. "I will consult with his teacher and make suggestions,  but then it will be up to her to help your son learn to use his device within the classroom."

Carter's mom looked to the teacher.

"Not I," said the teacher. "Your son's device is very overwhelming and complicated. I am a new teacher and I have all these other students to worry about."

Carter's mom was not happy with the answers she received. She asked about whether the communication disorders assistant (CDA) would work with Carter and was told that he would receive very few, if any sessions with a CDA. She asked if the Educational Assistants could help Carter with his device but was told that their time would be divided equally between all the students in the class with special needs so Carter would not receive any one on one help.

"We will do it ourselves," said Carter's mother and father. "We will do whatever we can to help Carter learn to use his talker. But there must be someone out there who can help us support our son so that he can develop functional communication skills."

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Throughout Carter's childhood I've gratefully accepted whatever professional help that's been available for him and I've done my best to work with those supporting him. But the truth is, the services provided have not always been adequate.

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 too often the answer to my question, "Who will help us?" has been, "Not I."

Just over two years ago, my husband and I became so frustrated with Carter's school situation, and 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.

So, 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 as we got in the car after the meeting was one I will never forget. He shook his head, then looked at me and said, "Shit. Now what do we do?"

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

After weighing things out, and exhausting all possible scenarios (and ourselves in the process), my husband and I came to a decision. We had to try to somehow make this work for Carter. We did not want to look back in five, six...ten years and say, "If only we had..."

And that's why, just over one year ago, our family moved from our home town; the area where my husband and I grew up, where our family and friends live, where my husband's business is located, to a place an hour and a half away - on the other side of Toronto.

Some might say that it was drastic to move away from all that we know and love, and from our family's main source of income. Maybe that's true. But, we felt we had to give it a shot.

We've lived here for just over a year and Carter has been attending his new school for that long as well. He even attended during the summer months.

Is the situation ideal? As ideal as it can be. Five days a week my husband commutes back and forth across Toronto for work, to and from the place we used to call home. What should normally take an hour and a half can often turn into a three hour drive (or longer), depending on traffic. Enough said.

Has Carter found success at his new school? So far, yes (thank goodness!). And he is being challenged academically while receiving support with his talker.

I got tired of the "Not I" response that I received when asking for help. But I didn't know where to turn for support. So, my husband and I took things into our own hands to try and solve the problem ourselves.

In an effort to improve the support system for those who are experiencing similar issues, I'm involved in a project created by Kilometres for Communication to develop an AAC network. The network will bring the AAC community - parents, AAC device users, and professionals (SLPs, OTs, CDAs, etc.) together.

Although the project is in its early stages, once up and running, the AAC network will be a place to turn for anyone who has a family member or close friend who needs, but does not have, adequate access to AAC services. For those out there asking, "Who will help us?" the answer will be a resounding "We will!"



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