Read more about Ewan's journey with language in the new book Brains, Trains & Video Games: Living The Autism Life now available at Amazon and Barnes & Noble.
I thought it would be nice to share our son’s experience with augmentative communication in this section. I do have my son’s story basically all over the site, but here’s a quick way to find out the problems we’ve encountered with communication and the strategies that we’ve used to deal with communication problems and roadblocks. >First of all, when my son was evaluated for early intervention services at 13 months, he did show a marked delay in speech development. He did not refer to me as mama although he did have a
I thought it would be nice to share our son’s experience with augmentative communication in this section. I do have my son’s story basically all over the site, but here’s a quick way to find out the problems we’ve encountered with communication and the strategies that we’ve used to deal with communication problems and roadblocks.
First of all, when my son was evaluated for early intervention services at 13 months, he did show a marked delay in speech development. He did not refer to me as mama although he did have a one syllable sound for da for dada. Most of his speech was in that fashion, one syllable and would often change. He grunted and growled a lot and did a lot of screaming and laughing. When we went to meet our new speech therapist, she immediately started getting Ewan to use sign language. The first sign my son learned was ‘more’. He picked up very quickly on the signs and we added several more to our repertoire.
I was learning sign language too though and I needed to have a way to remember the sign and use them at appropriate times with Ewan. I made these sheets for Ewan and I to use. These also came in handy when he went to grandma’s house and he happened to use a sign, and guess what grandma did not know them. This way grandma could quickly look through his sheets to see what he was telling her. Now this only worked because we started with so few signs. It certainly has its limitations but it’s a great way to learn new signs and to begin learning signs with your child.
I will say that I was completely unaware of how severe Ewan’s speech delay really was. I kind of thought that with a few months of speech therapy, my little guy would be back on track. I did not understand the scope and severity of his speech development at that time. I remember going through my son’s goals with his speech therapist and asking her, ‘oh how long do you think that will take’ when talking about getting my son to do a two word utterance. She tried to impress upon me how difficult it was going to be but I just didn’t grasp how complex the issue was.
Unfortunately, we moved to another town and we had to get another SLP despite the great progress Ewan had made with his first speech therapist. When we started working with the new therapist, I kind of wondered about it being the right ‘fit’ for Ewan. This particular therapist was highly recommended by so many people, that I thought it must just be us! But we finally realized that Ewan just wasn’t making the progress that we had hoped for and we decided that it just wasn’t going to get any better. It was also at this time that we saw our first doctors about Ewan’s development and we were encouraged by all the doctors to push alternative forms of communicating with Ewan. We had used some pictures but certainly not extensively and we were using signs but less than 50 different ones. Finally, we decided to find another speech therapist to see if a change would help us out of stagnation.
Amazingly enough, the change in therapists completely changed how Ewan progressed in terms of communicating. This new therapist pushed signs and every time she came we learned a few new signs. I would sit down with her during therapy sessions and follow her lead and practiced the signs throughout the sessions. We quickly moved to 80 then 100 signs and then more. Around this same time we started taking photos or some pretty common stuff and people and using them with Ewan, although he still wasn’t using them 100% of the time and I think he found them somewhat frustrating. We only had so many photographs and he still couldn’t express his wants and needs and thoughts.
In the middle of all of this, Ewan’s developmental therapist suggested that we get an augmentative communication evaluation done. We had no idea what that meant but it seemed promising if it was going to help us reduce Ewan’s frustration level (which was going through the roof!). When we went to the eval we were shocked to find out what augmentative communication meant and honestly, I had my doubts about all of it. I didn’t like the voices and I didn’t like to think of my son having to use them. Then while we were at the eval he used a device to tell us he wanted to eat pancakes and every bad thought about him using a device left me immediately. My son had never been able to tell me what he wanted without me having to guess and now he could. It was like a whole new world was opening up for him and for us.
But the process to get the device was still several months away. We also moved out of state at the time and had to complete the funding process of getting a new device in the new state. We started with a new speech therapist when we moved and Ewan had to get comfortable with someone new. I will say that God must have had a hand in putting Ewan and this therapist together because we have seen so much progress with her, she’s so amazing I can’t even put it all into words. You know who you are Stacey!! She was able to help us get all the paperwork finished and to send off to the manufacturer within a month of moving but it would take some time for the insurance company to go through the claim. Finally though, about 3 months before Ewan’s 3rd birthday we received a rental Dynavox MT4 for us to use on an extended trial basis. In other words, the insurance company really wanted to make sure this was the device for him. So I thought that since we were basically judging how well or not so well Ewan was going to do with the device that I should keep a journal. Keep in mind Ewan did have some natural speech at this point but it was very limited and he was not able to ask for hardly anything or to answer any questions at all using his natural voice. Here is what I wrote in my journal. We started using the 8 button preschool pages.
Received the device at 4:00pm. We programmed the personal info into the device and made a few changes. Ewan watched every thing we did—VERY interested in what I was doing. Made a button that said “I like trains” and he used that and smiled at me. Then he just explored the device till bedtime.
Tried to get Ewan to ask for milk but he hadn’t explored the device enough yet. He ‘played’ with the pages and words and explored the device. I made a train page with Thomas the Tank Engine characters. He explored that page a lot with obvious pleasure. He liked the family page since I put pictures of his siblings, Skye and Vaughn in. Did this ALL day. By the evening the device froze up and we couldn’t use it till Saturday morning. He has completely mastered moving from page to page and back between all the pages.
Took device with us to grandma’s house. Ewan used it to talk about blocks since he was playing with blocks there. Used phrase ‘make it tall’ and ‘clean it up’. Asked his grandpa for a cookie and chocolate milk using the device.
Ewan practiced using the device all day. We programmed many more pages and changed some stuff around. He asked for chocolate milk, cookies, chips with the device. He talked about trains using the train page. He likes the social page and said ‘hi’ and ‘see you later alligator’ (he really liked that). Continued to explore different pages. I programmed a Gameboy page with all his favorite game boy games and things to say like ‘it’s not working’ or ‘we need to charge the battery’. He LOVES it!
Ewan woke up and went straight to the device without so much as looking at us! He then asked for a cookie with the device. I got him a cookie and he was SO happy! Little bit later he asked for chocolate milk using the snacks and drinks page. I programmed ‘I’m hungry’ into the device and ‘I want ice’ and he started to use those immediately. Took device with us as we ran some errands. I put the MT4 on his lap while he sat in his car seat. We passed by McDonald’s and he asked for fries and chicken nuggets using the device! Later that night he asked to COLOR and when I got out the supplies his face lit up. I programmed in Pizza Hut pages with video game requests and some stuff about dad and he actually said “Oh YEAH”! And he understood! Went to Pizza Hut but it was very busy and he got upset and wouldn’t use the device while we were there.
Woke Ewan up for therapy but it went very badly. He was tired and therapy did not go well. He did not use the device during therapy, but did the rest of the day. He did more ‘I want to color’, used to ask for food, drinks, ice, and said ‘I’m hungry’ using device—we’ve never known this before for certain!! Later that night explored all the feelings buttons. Told me each one ‘I feel’, ‘sad’, ‘happy’, ‘mad’, all of them and did facial expressions with each one. He pretended to be asleep like the person in the symbol and would say ‘wake up’ with the device. Wanted me to act out all emotions too and pretend to be asleep so he could use device to say ‘wake up’! We have NOT been able to get Ewan to understand emotions this way before! Then he pretended to be sick after pushing ‘sick’ button and used a crayon as a thermometer! WOW. I gave him a real thermometer and he said, with his own voice, “OH YEAH, OH YEAH”! We did this for approximately one hour.
Ewan woke up for therapy and immediately used device to ask for chocolate milk and a cookie. Used device entire time during therapy! Told therapist he wanted to color using device and then used shapes and color pages to tell her what to draw and what colors to use! Explored numbers page and toys and bedroom. Used the ‘my bedroom’ page to tell therapist he got a new bed. Later during the day he used the device to ask for chicken nuggets, sprite, and fries at McDonald’s. At night, I told him he had to go to the Doctor’s office in the morning and he went to the Doctor page and explored ‘something hurts, it’s my __’ and used different body parts to fill in the blank. Practiced ‘hello doctor’ and others. Used band-aids to practice and asking using the device and listening to his heart.
Went to doctor’s office. Using the device to ask for all food products and gameboy requests. Now saying “I want” with his natural voice as he pushes the button about 60% of the time and used to be 0. Took device into doctor visit and he used device to say ‘hello dr’ and ‘something hurts it’s my __’ but only to play around with the doctor. We used device concerning the elevator and he told us all that he wanted to do. Used the device to say he saw cars and trucks on the skywalk at the hospital. Still talking with the device, about these cars and trucks several hours later. Took Ewan and the device to the mall. He used it to say he wanted to ‘go to the car’ and ‘time to get the mail’ (his favorite thing to do). We came home and he explored the device off and on and I think he was trying to describe seeing the elevator and the cars and trucks since he kept pushing those buttons. Used to ask for all needs.
Found the ‘I want candy’ button and he used it A LOT but also used device to ask for Gameboy and even told me with the device ‘it won’t work’ and ‘charge the battery’ when the Gameboy stopped working. Repeatedly asked for popcorn with device. Used ‘I want fire truck’ then ‘I want video’ to ask for his favorite fire truck DVD!! WOW!! Used color and shapes page to practice as well as the numbers page. Still talking about elevator and cars and trucks he saw on Thursday.
Used to ask for all needs. Used for talking about the weather and explored weather page. We were watching TV show where there was a volcano erupting and the falling ash looked like rain. He used his device to tell me ‘It’s raining’. He discovered the ‘book’ pages and ‘I want to read a book’ button. We read several books and he used device to say ‘read it again’ and ‘turn the page’ and ‘the end’. Did this REPEATEDLY when we read each book—about six books and he brought them all to me SPONTANEOUSLY! Never done that before! Used the ‘time to’ page a lot. At night he told me ‘it’s dark outside’, ‘it’s raining’, and ‘it’s cold outside’ and it WAS storming!
Used to express all needs. Used to say ‘I want to color” and asked me to draw shaped, faces, and use different colors. He explored the holidays pages and told me ‘Halloween’ and ‘Christmas’. Explored doctor page again. Explored the getting dressed page and after bath he used device to say ‘I want pajamas on’.
Went to hospital and had a BAD day. After preschool he used and explored all kinds of pages. He now knows and has mastered all the screens and moving back and forth. Used device to ask where Skye and Vaughn were.
Went to grandma’s house and used to say ‘I want to go to grandma’s’ in the car. When we were there he asked for all needs and when he wanted to leave he used device to say ‘time to go to the car’ and ‘time to get the mail’. Also used ‘I need my blanket’ and ‘I like trains’ in the car (we got stopped by a train on the tracks).
Used to express all needs and wants. Talked about weather again. Used the ‘I want to call’ button and then pushed ‘dad’! GREAT! Asked for his cat with the device. Later asked to go to Pizza Hut and then when we were there he said ‘I want Daddy’ and then ‘I love you’!!! Asked for video game on Pizza Hut page and ordered by using ‘pizza’ and ‘sprite’ buttons. Later that night he played with ‘something hurts’ and showed me each body part. Told me repeatedly ‘mom and ‘I love you’!! Used at school to say, ‘it’s time to get the mail’.
In the morning he heard me say to his dad to go the store and get me some things. Ewan went to his device and used it to say ‘Grocery Store’ and ‘I want’ and then got to go with his daddy!!
That’s where I stopped with the journal and soon after sending in all that with the other professional reports, Ewan got his own MT4. We made sure that his device was always available to him at home and he would even get to the point where he would want to sleep with his device! He took a very protective stance to the device and with adults he would proudly show them his device. Now, when it came to other kids he didn’t want to use it as much around them, but he would if he had to. We used it extensively in therapy (with our amazing speech therapist, Stacey!) and we began using the device as a way to prepare Ewan for transitions or events by downloading digital photos into the device. As Ewan used the device he would repeat what the device would say and used it as a model. Eventually, he was able to use his natural voice to say “I want” and many other things but it always took using the device first. His natural speaking ability took a huge jump forward as he used the device and modeled language after it spoke. The device provided him with a great visual cue and an auditory prompt.
About six months after we got the device we noticed Ewan didn’t want to use the device as much and his natural speaking ability kind of hit a roadblock. So his therapists and I decided it was a good time to move up from the 8 button preschool to a more complex pageset. Ewan independently chose the Gateway 30 when he was offered different screen choices. So we moved him up to the 30 button pageset. I will say that I created a completely customized version of the 30. It looks very, very different than what comes preprogrammed on the device and I was able to use the semantic power strips available on the 40 (and create my own) with our own version. This took some practice and some time for him to find everything but he loved all the new choices in phrases and vocabulary. He was able to play around with individual words like the, a, and, to, and others. He was also able to play around with adding –ed endings to words and –ing endings as well.
As we changed him to a more complex page system, his natural speech took off again. He extended his vocabulary, both in what he could say and understand. He was able to connect to more concepts and to learn about more things because he could understand what we were talking about. Ewan now needs the device less and less for requesting things, making comments, or to label objects as his natural speech has developed to the point where he can do this on his own. However, we still use the device when learning new vocabulary, when he has bad ‘speech’ days, and to fill in the gaps speech wise for him. He also uses his device to teach him how to respond appropriately to questions like “What’s your name” and “How old are you?”. He has to practice using his device until he can work it out and use his own natural voice.
Over the summer we also used the device to help him with repetitive questioning. Ewan like to ask the same questions over and over, especially when we are going somewhere. So we created a page that helps him deal with that. He can basically ask and answer his own question until he’s able to figure it all out. We also created a series of pages that use digital photos and sound effects to help him understand the bigger picture or what something like ‘winter’ means or ‘storms’ or ‘sports’. So for winter, the picture is a man walking in the snow with a big, warm coat on and the sound effect Ewan hears is the sound of snow crunching beneath his feet. Ewan absolutely loves these pages and this has been one way to connect for him with other kids his age. All the other kids think these pages are cool and for the first time, Ewan was proud of his device with children his own age.
When we saw the feeding team out of Springfield, Illinois they had suggested we make a story about eating and the process that goes into getting ready to eat. We decided to put all this on his device as a page set instead of just a paper and picture kind of story. This has helped him tremendously. He is able to rate his food using the device, which helps his team find out what foods will work for him and what foods to wait on. He is also able to understand that it is ok to touch his food, smell his food, and lick his food before taking a bite. I cannot say enough how much this has helped Ewan in terms of eating and feeding problems.
But I want to emphasize that during all this, we never stopped using the photos or the sign language. We used all three of them, and we still do. We create photo stories for Ewan, we used signs on the playground, in the pool, even when we have the device right in front of us. We try to use whatever works wherever we happen to be. When we were learning new page sets or vocabulary on the device that I had added we would play games around the house like basketball and in order to take a shot, he or I, had to find the page and the symbol of something. We made using the device fun and functional, cause if you’re three if it’s not either of those two things, most kids will just not be interested.
All along we have tried to make our communication strategies functional for Ewan. That means we take pictures of whatever he’s having problems with, things he likes, things we want him to try or do, and tie it in with sign language, his device, or watching videos or reading books about the same things. Everything is very integrated or else he loses sight of what’s important. He’s come a long way but we also know that we’ve got a long way to go. We were prepared for this device to be Ewan’s voice and to treat the device as if it were a part of him. The device was never put in the closet; it was always out on the table where he could reach it. The device never stayed at home when we left the house, it always comes along too. We are never ashamed that our son uses a device like this, in fact, we’re quite proud of him. The fact that he is using his natural voice now is great but it’s also great when he uses his device, we’re happy with whatever works best!