This morning my son Benny's first grade teacher called in response to a concerned email I had sent regarding his AAC device that we call his "talker". He had been coming home with the volume turned down so low that we could barely hear him in a quiet room, and I was worried that he was being silenced in class. His teacher reassured me that she made sure that he always had his talker available and turned up loud enough to be heard, and she told me a story that for most parents would be so commonplace as to not be remarked upon, but for me brought tears of joy to my eyes.
She told me that the previous day it was Benny's turn to be called upon during storytime. She said that he had his talker ready and his response was exactly right. Everyone was happy and excited for him which prompted him to use his talker to continue talking, but when she let him know that it was time for the next student to have their turn he quieted down.
This is the kind of interaction that students in a general education classroom have all the time. For most students it is not a big deal to answer a question in class, but for our family this interaction is the result of years of hard work.
When Benny was diagnosed with Down syndrome prenatally, we knew that he would most likely have to work a lot harder to gain speech than a typical child. What we weren’t expecting was that Benny would gain speech and then lose it again. After years of standard speech therapy Benny was struggling to gain speech only to slide back again. A speech pathologist with experience in apraxia gave him a diagnosis of childhood Apraxia of speech. This diagnosis is different than a typical speech delay because it is a motor speech disorder in which the child's brain is unable to communicate appropriately with the muscles of the mouth and tongue, leaving the child unable to articulate clearly and consistently.
We knew that Benny could understand what we were saying and that he had a lot to say himself, he just needed help saying it. We had taught him sign language as a baby, but unfortunately very few people know sign language, so although this helped mitigate some of his frustration this was not helping him be able to communicate outside of our home. We asked for an AAC device assessment through the Department of Developmental Disabilities, and after looking at a variety of different devices decided on a Tobii Dynovax AAC device.
We were fortunate enough to receive training from a speech pathologist focused on the use of AAC devices. In addition, Tobii Dynovax has a robust customer service program with local reps available to answer questions, and we were fortunate that they happened to be having a training workshop in our area that I was able to attend. All of this was very helpful to get us started on how to support Benny in learning how to use the talker. Even with all of this support it took years for him to get comfortable and confident enough to be able to have an interaction like he had in class yesterday.
For a child like Benny to be able to raise his hand in class and successfully answer a question there were a lot of steps we had to take. Acquiring and learning how to use an AAC device took a lot of time and effort. So did finding a school and teacher willing to have Benny attend the general education classroom with his peers. A few years ago I wasn't sure if it would ever be possible for Benny to raise his hand and answer a question in class. There were so many steps to take for him to get there. Now that I have seen how beneficial the AAC Device has been I am excited to continue to work to support Benny in using it, and other tech that can help him overcome his challenges so that he can continue to participate fully in his community at school and beyond.
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!