dignity of risk

By Whitnie Trost

My son Chris is a young man who experiences Down Syndrome. We noticed early on that Chris was a bit different than other kids we had met who experienced Down Syndrome, but we couldn’t put our finger on why. We knew when he was born that there would be some challenges, but anyone who knows me at all would never have imagined that talking and communicating would be Chris’s challenge. I pretty much have a black-belt in talking and I have six kids who talked all the time, mostly at the same time, so there were plenty of opportunities for Chris to “pick up some tips” if you will, but still vocalization alluded him. We also began to notice that he was not super engaged and often, to be honest, seemed like the grumpiest kid with Down Syndrome we had ever met. He did not seem to have a desire to engage with other people or be involved in the way other kids wanted to be involved. He hated loud, abrupt, unfamiliar noises, and his most hated sound has always been a baby crying or screaming. At first, I thought it was just a deep compassion for the sad child, but I soon realized that nope, he was just in pain from the annoyance and would have done anything to have the sound stop.

Chris started school off okay considering. As his parents, we knew him best, so we shared as much information with the school team and troubleshot as much as possible when new things arose. But still, with all of that, Chris still had never spoken a word.

Now when I said Chris had never spoken a word, it definitely did not mean that he was not able to communicate. You only had to pay attention to all that Chris did to realize that he was communicating through his body language and certain behaviors. For example, one time my parents were watching Chris while my husband and I went on a quick trip. They said that Chris went to the trash and got a fruit leather wrapper and gave it to grandpa. That is how Chris showed that he wanted some fruit leather. Now before you call DHS on me, let me make it clear that I don’t expect Chris to be required to use trash as a means to communicate, it was just one of the first times that he let us know what he wanted by communicating …. with trash….. OK moving on.

We then started to really watch him to see if he was communicating in other ways. And of course, he was. There was the basic sign language, ‘more, eat, all done’. But beyond that, sign language never really connected with him.  He would bring me his shoes when he wanted to go somewhere, grunt really loud, throw his glasses or drop to the ground when he did not want to do something. We were amazed to see how much he really was engaged and aware of some basic communication skills. He just did not have a huge library to draw from so he stayed with those basics for a while.

Halfway through first grade, we got his progress notes from the school. Up until this time, he was in a gen ed. class for most of the day with push-in supports. But after this progress report, it was clear that the discussion of moving him to a more segregated setting was on the agenda. The progress note said things like, “he just does not feel comfortable with the other kids. He just doesn’t understand. We are afraid, his attention span is troublesome.” Long story short, for these reasons and many more, the school wanted him in a self-contained classroom so that his “extensive needs” could be met.

Something just did not sit right with me, so I asked the school to do evaluations and we went ahead and did our own private evaluation. This changed everything. We found a woman who not only had her own private practice but was a speech therapist in the Portland Public School system, so she understood what the school would and should be looking for. She said that she specialized in communication devices. I said, “you mean like a walkie talkie?” “No,” she said, “a language system for people who struggle with Communication.”

She started her evaluation process by showing Chris a ball that he would throw in a very small room. Anyone who has known Chris knows that when he was younger, he had a huge desire to throw anything he could get his hands on, so this was a dream come true for him. She gave him the ball and then when he threw it to her she put it on the shelf and waited for his eyes to move or give some indication that he was wanting or looking for the ball. She then got out an aug comm device that had several words on it and she found the word ball and pushed it and it said…. You guessed it….“ball”.  Chris’s eyes lit up. We were so excited.  After a few times modeling this action and giving him the ball once he said the word, he would get the ball.  He used his first Aug com device about 30 times that day and our world began to open.

I wish I could say that things changed overnight, but of course, they didn’t. We did many trials using different devices and ended up with a Vantage Lite. We started using it at home and were so excited to bring it to school and help them start using it. That did not go quite as planned and I believe it became a doorstop or a really heavy paperweight at school because no one knew how to use it, and you can’t use it if you don’t know it, and Chris needs support in using it so if the team did not train, they could not teach with it. So, it just sat.

We had several challenges with the school and ended up needing to do some legal things to get the school to have any sort of positive expectations for Chris. Long story short, we had an Independent education evaluation done and Chris was officially diagnosed with Autism, which is …wait for it…a communication disorder. My son was not and will never be “too dumb to learn” and he will not “suck the resources out of the room”. He needs, just like the rest of us, a way to express his wants needs, likes, dislikes, feelings, etc.

As we moved into Middle school things got a bit better with the change to a new SLP. The first month of school she said, “I really think Chris has so much to say, and he is so smart. I really want to work this year to help him have a voice.” I had never had anyone at school say something like that. Well, changes happen and of course, she got transferred to a different school. The IA’s who worked with Chris really did try but because the school pushed back on any formal training (and I must note that the company who makes Chris’s device provides free trainings to school, staff, and families as many times as you need) so the words that were focused on were the ones that Chris knew and liked most, which were food, specifically “pretzel”. So basically, it was a very expensive way for Chris to order food.

It wasn’t until we got to high school that we recommitted to strategically using Chris’s device again. The SLP at the Highschool loved working with Chris’s device and actually really knew the program and arranged not only for the IA’s to be trained but also some of the actual teachers. I was so amazed. The trainer put us in contact with a private SLP who not only specialized in training families and kids on the device Chris now has, which is an updated model an Accent 8000, but comes to the house so she can work with Chris in his own environment. He has grown so much. What I loved most is that the trainer, the school SLP and our private SLP focused on modeling with the device, which essentially means, we talked with Chris using his device over and over again all throughout the day and then help him respond, or correct when he needs. Just like a toddler learns to talk by listening and watching over and over several hundreds of times, Chris needs to do the same, so we model, model, model. If he uses his body or points to something or uses the one sign language motion that he created to mean every word in the English language, we say “say that out loud” or tell me about that” or can you use your talker”? Then we respond back using the device to talk as well as our voice.

A few examples of the amazing changes that have happened are Chris was watching a movie and as a commercial came on, my husband began channel switching. Chris got up and got his device and pushed the words “television Help”. In other words, he was saying “dad change it back to my show”. He, of course, loves to use it to request food all the time, but now it is not just the word pretzel or milk, it is “want eat make eggs.” Then I can model “ok, do you want 1 or 2 eggs” using the device.  The school has been awesome as well. Jeff, our learning specialist, worked with our school SLP to create a functional communication goal as well as including his device use in all of his goals. He is included in gen ed for 70 % of his day and his device now give him a way to understand the modified curriculum better. We also use it at Church. We trained his youth group and created a page with easy to find “church words “so that they can be easily modeled.

Chris is more engaged and now he looks into our eyes more and acknowledges that we get it. When we use the device to explain that we know what he wants or does not want, or to ask a question, he lights up. He is trusting that we will try, that we will validate, and that we may not agree but we will let him know we understand. When we don’t agree, he is much more patient and with modeling on the device, he will change directions and be willingly redirected.  Sometimes I get discouraged and think this is all taking so long, but then the other day, I modeled I love you. He leaned over and typed in “Thank you.” He then leaned forward and let me kiss his forehead.  I mean what else do you need, right?!