Friday, 25 January 2013

Carter's Story Part 2: The Waiting Game

Part 1

In the land of special needs, immediacy is virtually unheard of. The short list of things that special needs parents wait for includes, answers, tests results, services, funding.

With Carter we waited for answers. Why wasn't he speaking? We waited for help. No one seemed to know what to do with a toddler that wasn't developing speech. After being shuffled through the system at our local child development centre, (we participated in the Hanen program and then received minimal speech therapy service) we were placed on a waiting list for Augmentative Communication services. We waited three years.

Nintendo DS with Tap to Talk program
While on the wait list, I was determined to do something to advance Carter's communication beyond the sign language and gestures he'd learned to use from an early age. I did some research on the internet and came across an AAC speech program that would operate on a Nintendo DS, a portable game system (this was just before iPads became available). I decided to purchase the program and the gaming device. After I figured out the initial programming, Carter had his very first speech generating device and he loved it! It gave Carter a voice, allowing him to label items and take part in basic interactions. It was a great introduction to a simple speech device but he quickly outgrew its capacity.

It was around this time that Carter came off the waiting list for AAC services. His AAC evaluation, that consisted of 4 separate visits with a speech therapist and a communication disorders assistant (CDA) got underway. The evaluation would lead to a prescription for a speech device. The prescription was required in order that Carter be eligible for government funding through the Assistive Devices Program (ADP). The funding would cover 75% of the monthly fee to lease the prescribed speech device from Ontario's Centralized Equipment Pool (CEP).

Surprisingly, upon completion of Carter's AAC evaluation, during which he had the chance to try out various speech devices, I was told by the SLP that it wouldn’t matter what system I chose for Carter, he would do well with anything.

I set my sights on getting Carter a device that was small, thinking that portability was top priority for Carter. He is ambulatory and a very active boy. I wanted Carter to easily be able to take his device wherever he went.

Before any paperwork was put in place to obtain a device, I travelled to Pittsburgh for the CASANA (Childhood Apraxia of Speech Association of North America) conference where I attended a workshop given by an SLP from the AAC Institute in Pittsburgh.

I learned some very important information at the workshop that changed my thinking and my priorities for choosing Carter's speech device. I learned that size and portability should not be my main concern. Instead, I should focus on getting Carter a device that would allow for maximum language output while fostering language development. It was suggested that I consider the Vantage Lite speech device by Prentke Romich Company for Carter.

The language on the device is called Minspeak. Unfortunately, during Carter's AAC evaluation I hadn't been given a thorough explanation about how Minspeak and Minspeak Application Programs work. My brief look at a device with the Minspeak language left me feeling perplexed. With Minspeak, the relationship between the symbol and the word(s) it represents is not always obvious. I remember feeling that if I couldn’t understand the language and symbol set on a device then how would Carter?

I am so thankful that I attended the AAC workshop at the conference. It prompted me to do further research about the Vantage Lite and Minspeak. Once I had a better understanding of the device and the language on it, my decision was made. The Vantage Lite would be the best device for Carter (read my rationale here) and I would move forward with getting him the device. 

Choosing the most appropriate voice output device for Carter was a challenge, but it was a much easier process than what I would go through to get him the actual device.

Click here for Part 3 of Carter's Story: More Waiting

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