What a tale your thoughts could tell
Just like a paperback novel
The kind the drugstores sell....
"If You Could Read My Mind," Gordon Lightfoot
What would Alex tell us if, suddenly, he were able to communicate his deepest thoughts?
That is something I wonder daily. I remember the first time I heard the expression "not being able to speak is not the same as having nothing to say."
People sometimes assume that because of Alex's disability he does not have deep thoughts, or maybe they just don't think that much about it. Those are the people who comment with amazement after spending time with him their realization that he has "a lot going on."
We try to read it in his face, in his body language, and with the communication he does possess. We've tried so many ways over the years to help him communicate. Although we've had break throughs, his communication is still quite limited and confined mostly to requests and commenting about concrete things through the use of his communication app on his iPad.
When he was about 8, his teacher suggested we try a communication system called "PECS." This Picture Exchange Communication System involved creating small, square icons and teaching him to exchange the pictures for concrete objects. I attended a two day training along with Alex's teachers. I was so excited that I started working with Alex as soon as I got home. You start with something concrete and motivating. I taught Alex to request Doritos.
Within days his communication exploded and he was able to string together words to create sentences such as "I want Doritos and Hi-C and swing." He would look all over the house for his dad or me to make the request. PECS showed him how to initiate communication and that part of communication was having a communication partner. It was a huge break-through. I learned to love the sound of velcro as we could hear him putting together his sentences.
I bought a laminator and a scanner and created PECS boards for home and school. This was circa 1998, and we didn't have the internet to find pictures or digital pictures. I remember scanning actual packaging from Doritos and Mac and Cheese and whatever he liked to make the pictures. I also used icons from a program called Boardmaker. At the training, they said students were significantly more likely to be successful if they used the PECS system at home and at school. I made the pictures and set Alex up with everything he needed. John and I have always had the philosophy that we wouldn't ask school to do more than we were willing to do ourselves at home.
Alex did great with PECS, but eventually his book was large and cumbersome and we could tell he was ready for more. He used it primarily for requesting food and activities, and his communication was basic, but he had learned what communication was.
Next, his teacher suggested an AAC device. We had to go through an agency, conduct a trial and collect data to prove he could use the device to let us know if he were sick or injured so that his doctor could write a prescription for it so we could get insurance approval. It took about a year to go through the whole process, but we were able to acquire an $8,000 DynaVox MT4.
By today's standards, the unit looks heavy and clumsy. In the early 2000's, it was amazing. We could have layers of pages and hundreds of vocabulary choices. The unit had a voice output, so Alex could communicate more independently. It was, in its day, considered portable. He carried it back and forth between home and school and we tried to take it everywhere we went. We took it out in public, and he learned to order food in restaurants and we tried to integrate it into our daily lives. It wasn't perfect, but it made a difference.
We took Alex to visit his sister, Jessica, at MIT her junior year. While we were there, we had the opportunity to visit the MIT Media Lab and meet with some grad students working with Dr. Roslyn Picard. They were developing biometric devices for use with people on the autism spectrum. They spent a couple of hours with us, showing Alex some of the devices they were working on. It was an incredible experience.
It was about this time that apps for iPods were beginning to explode. On our drive home from Boston, John and I kidded that what we needed for Alex was a communication app. Once we got home, I starting looking for something and discovered an app called Proloquo2Go. It was in beta testing, and we bought it for Alex the day it was released. That was in spring of 2010.
Alex would be described as someone with "complex communication needs." The whole area of AAC is undergoing a great deal of change, and I'm doing my best to keep up. I was trying to figure out how to help Alex to the next level of communication when his cancer was diagnosed, so new communication ideas took a back seat to cancer treatment. Now we're back to trying to help Alex expand his communication.
My hope and my goal is to someday make that break-through to help Alex communicate beyond asking for pizza or for a ride in the car.
We've been practicing with his P2G (Proloquo2Go) on his iPad mini and he's made some interesting comments lately.
At a recent chemo appointment, he was talking about his blood draw and labs. Then he exited that screen and found the button for "new topic." This was not a word I had modeled and it was on a page I hadn't seen him access before. Coincidence? Perhaps. But I like to think it was purposeful on his part.
Alex has shown many times that he has the persistence necessary for communication. He has learned to try to repair communication breakdowns. I really feel he is ready to take a next step. And I know I am so ready to finally hear what he has to say.
Despite his communication challenges, Alex manages to make his point, often in interesting and amusing ways. We have some favorite stories of his communication attempts, particularly when he had to persevere because his family was too thick to catch on.
White Chocolate Almond Bark - when Jess and Alex were much younger, maybe around middle school age, the three of us travelled to Door County for the day. This is a tourist area in Wisconsin with beautiful scenery and lots of small towns with a variety of shops. We were in a candy shop, and Alex started pointing at some candy in the display. It was white chocolate almond bark. He doesn't like nuts and, to my knowledge, had never had white chocolate. You should also know that Alex is someone who does not try new foods easily. It can take a year to entice him to try a food that he is curious about, and it's almost impossible to get him to try something new that he isn't interested in.
So I told him no, he didn't want the white chocolate almond bark. Well, we went to several more candy shops that day, and in each shop he asked for the white chocolate almond bark. He couldn't verbalize it, but each time he found it in the glass display case, and touched the glass and looked at us. Finally, I relented and bought him some. He ate it most enthusiastically. The boy who never tried new foods ate all of this candy I didn't think he'd ever seen before. That day still stands out to me as a time when I learned that Alex was in fact capable of knowing his own mind and finding a way to get his point across.
Jessica and I still laugh about this today, in part because we were so thick and didn't listen to him, but also because we visited so many candy shops that day.
Firefly by Joss Whedon - another favorite family story is how Alex introduced our family to the series Firefly by Joss Whedon. We were in Best Buy, and Alex chose a random (or so we thought) DVD off the shelf. It was a box set of a tv series we had never heard of. Once again, we told him "no," he didn't know what he was asking for. Over several months, each time we visited Best Buy, he would go to the display and find Firefly and take it off the shelf. Eventually, we decided to let him buy it. We thought for sure he would lose interest and that he didn't know what he was asking for. Even though our family already loved Joss Whedon and were big Buffy the Vampire Slayer fans, we didn't know about Firefly.
We watched the series when we got home. It is now a family favorite, and watching Firefly cemented our love of all things Joss Whedon.
I still don't know how Alex knew about the series, but I no longer think his choice was random. I believe he knew what he was asking for.
Two by two, hands of blue - my third story happened just recently. Alex and I were at a craft store, buying supplies for my classroom. He saw something that caught his eye, and made a bee-line for a display. It was a paper mache hand. He took it off the shelf, looked at it, then put it back. We went to another part of the store and I was looking at items I needed for my project at school. Suddenly, he turned and bolted away. I followed him, and he went back to the display of the hands. He took one, then tried to take all three from the display and put them in our cart. I only let him buy one. We then went and met John for dinner.
I told John the story, and after dinner I went to do errands and he took Alex back to Alex's house. On their way, John had to stop at a store to pick something up. It happened to be next door to the craft store with the hands. It was a good thing I had filled John in on Alex's apparent obsession with the creepy hands, because as they walked toward the tool store, Alex tried to divert John and pointed to the craft store. They did not go buy additional hands, but we do have the one at home that Alex got.
When I told Jess the story, she reminded me about the Buffy episode called Hush and "two by two, hands of blue." I'm not sure what Alex's purpose with the hand was, but I bought some craft paint and I'm going to see what color he wants to paint the hand.
Someday, I hope Alex can explain to me what he was thinking in all of these situations. I hope he can tell me how he felt about his cancer treatment. I hope he can tell me his hopes and fears. I'd even be okay with him telling me all of the times I got things wrong.
In the meantime, I'll keep doing my best to pay attention. I'll remember the lessons I've learned when I assumed that I knew better, even though Alex was doing his best to tell me what he wanted. And maybe, just maybe, someday, we'll help him unlock all of those thoughts I know he has inside.