Blog#45~Can We Talk?
How does someone like Nick who has Down syndrome and autism communicate his needs and wants? Let me start at the beginning. When Nick was in the infant program he was taught sign language. He would sign “more, all done, yes, no and other basic words.” Using sign language gave him a voice when the low tone of having Down syndrome slowed up his speech.
When he was around 4 years old I began to snap photographs and put them on one of those blue school pocket charts. These pictures included things he enjoyed like juice, Goldfish, Thomas the Train and Barney videos. These worked great and he understood all of them.
In first grade I requested an assessment to see if he would do better with an augmentative and alternative communication device. According to About.com, Augmentative communication is an alternative way to help students and adults with language disorders use expressive language or receptive language. Augmentative communication can be accomplished through assistive technology devices such as computers or hand held devices. Low technology such as picture communication systems can also be used as augmentative communication.
The evaluator came out to the home to try some of the voice output devices with Nick. He just stimmed on the devices, hitting the buttons rapid fire like a DJ scratching a rap record.
The evaluator concluded that it would serve Nick better to use a low tech picture system to help him communicate. She gave me a handful of laminated pictures (goldfish, chicken tenders, pasta, milk, juice and Coke.) They were like rare, gold coins that I treasured. (There was nothing like Google Images back when he was 6 years old.) You either had to snap photographs, cut out pictures out of magazines or beg for icons from the speech therapist. Note that around this time, Nick was also diagnosed with Verbal Apraxia of Speech which further complicated his ablility to articulate. For years, Nick used pictures and sign language to communicate his needs.
Since Nick can’t read or write and his verbal skills are limited, he needs support. What we learned is that someone like Nick who has autism tends to see things clearly with pictures. If he can see it, he can understand it. In fifth grade the school team was trained on how to use the PECS (Picture Exchange Communication System). There is a precise protocol to the system. Once the protocol was followed, Nick made great strides in using the pictures to communicate wants and needs. He finally had a voice! 🙂
The cost of buying the software used by most schools is steep as well. A Mayer-Johnson Boardmaker program can be $400-$800 dollars! However, if you are a parent you can purchase these programs for 1/2 price. 🙂 Also if your CD gets damaged (aka, Nick dropping it from the second floor) they will replace it for no charge. Check with your support teacher, as they should have access to this software and will make any laminated icons you might need for home use. In addition, check with your local library and agencies like Easter Seals to see if they have it available to check out.
Most of the time Nick puts the pictures and icons on a velcro strip and hands it to the caregiver. However sometimes he gets a little more creative. 🙂
“Hey Mom, I’ve laid out my plan for what I want to do now”……..
Poor Kitty, nap interrupted………..
The next re-evaluation came in middle school. The team decided to try Nick on a voice output device. He was given a set amount time to just play and stim on it. But then, he began to understand that the device was to be used to communicate. There are all sizes and the cost for these can be thousands of dollars. Nick’s was around $8,000 dollars. The Dynavox V was the Cadillac of AAC (Augmentative and Alternative Communication) devices that would grow with Nick. This was provided by the school district. We found out later that the Dynavox V had major drawback. It was that it was heavy and bulky.
Dynavox V or as we named it “The Brick”……
After a few years with the Dynavox, We looked into other devices that would be more portable and less obtrusive. We ditched the “Brick” and moved to an iPod touch loaded with a program called Touch Chat. Another popular program is called Proloquo2Go. I like Touch Chat because you can upload your own pictures as well as using theirs. Both programs are excellent. The iPod is protected and enhanced with sound using a case with speakers- (iMainGo Speaker case.)
In essence, it is an electronic version of his PECS communication book. He still needs a lot of practice using it properly without stimming on it. The jury is still out on whether this will take over as his primary means to communicate.
Touch chat screen….
Finding the means to help Nick’s communicate continues to be a work in progress. If he is on the phone with you he might say hi and your name if he recognizes your voice. But mostly he will smile and wave.
He continues to use some verbal speech, sign language, Pecs picture book and the iPod Touch Chat. It’s like walking down the stairs. Sometimes you need to hold onto the handrail and sometimes you don’t. All of these communication methods are his handrail that support and facilitate his speech.
I have learned that there is no perfect way to help with speech. All of these serve him and have their drawbacks. It’s always good to have the backup PECS book in case the batteries die or the device goes for an unexpected dip in the pool. I hope this gives you some insight into the evolution of Nick’s way of talking through the years. That’s what is in my noggin this week.