When SB was diagnosed with autism at 20 months old, he still had no words. Nada. None. Zilch. Zero. Oh, he made plenty of vocal sounds. He said things like, “Ti-ka-ti-ka-ti-ka” and “Eee-eee-eee” all of the time. We pointed this out to the Developmental Pediatrician that diagnosed him, desperately trying to convince her that our little boy was talking a little bit, and did not really have a language delay. She called these sounds “gibberish,” and informed us that, sadly, they were not actual words.
By the time he was 22 months, SB could say 3 words. For some reason, they all started with the letter “B.” They were “bye,” “ball,” and “baby.” “Bye” was first. As we were leaving a family gathering at Christmastime, lots of people were saying “Bye!” to each other all at once. SB chimed right in. “Bye!” he yelled. We were thrilled! “Ball” and “baby” followed soon after. Little did I know how hard it would be to get a real, functional word.
Mimicking “bye” was a good first step, but he wasn’t really communicating with us. He was just copying us like a parrot. The much more challenging step was to get SB to speak a word that truly showed he was trying to tell us something, share something, or get something from us that he wanted. You see, children with autism often do not understand that vocal sounds (words) actually have meaning. Typical children seem to understand this intuitively without being taught. For children with autism, this is a pre-talking concept that you have to teach them before you can begin to teach them to talk. And boy is it tedious!
To help you understand what I mean, here is an excerpt from an essay by Jim Sinclair called “Bridging the Gaps: An Insidie-Out View of Autism.” Sinclair has autism and is a co-founder of Autism Network International, an autistic-run self-help and advocacy organization for autistic people.
“Because I didn’t use speech to communicate until I was twelve, there was considerable doubt about whether I would ever be able to learn to function independently. No one guessed how much I understood, because I couldn’t say what I knew. And no one guessed the critical thing I didn’t know, the one missing connection that so much else depended on: I didn’t communicate by talking, not because I was incapable of learning to use language, but because I simply didn’t know that that was what talking was for. Learning how to talk follows from knowing why to talk–and until I learned that words have meanings, there was no reason to go to the trouble of learning to pronounce them as sounds. Speech therapy was just a lot of meaningless drills in repeating meaningless sounds for incomprehensible reasons. I had no idea that this could be a way to exchange meaning with other minds.”
As I mentioned in my last post, SB’s first therapist was called an Infant Educator, who was a combination speech therapist/occupational therapist specifically for babies and toddlers. When he was around 20 months, she created a game for us to play with him that she called “Blanket Swing.” We put a large blanket on the floor and placed SB on the blanket on his back. Then my husband and I would each pick up one side of the blanket and swing him back and forth. He loved it! Because we are both musicians and wanted this to be somewhat entertaining for ourselves, we also made up a little song that we sang while we swung him. The song required us to insert a new phrase every time we sang it, and then take turns rhyming back and forth. Like I said, the song was just to entertain ourselves. When the song was finished, we stopped swinging SB and put him back onto the floor. Of course, he wanted more! The therapist wanted us to encourage him to say, “Go!” to ask us to swing him some more. Not surprisingly, he said nothing. But there we stood, trying to get him to say “Go!” We looked right at him and spoke the word that we wanted to hear, over and over again. “Go! Go! Go!” Nothing. The therapist encouraged us to keep trying, and since we were at Phase One of this process, she said that we should do more swinging as soon as we heard ANY vocal sound coming from his mouth. After a couple minutes of laying there on the floor, all of us getting frustrated, he grunted something that sounded like “Unh!” We cheered, we praised him, and then we swung him in the blanket more while we sang our silly song.
We only had a therapist for one hour a week back then, which left just my husband and me to work with him for the other 6 days. She gave us assignments each week that she wrote down in a notebook. We played Blanket Swing every day. At first his success was random. Sometimes he made the grunting sound, and sometimes he just stared at us, and then cried when we didn’t swing him more. Over time, he got more consistent, and after about 3-4 weeks of daily games of Blanket Swing, he seemed to finally understand that when he said “Unh,” he got more swinging. At that time, the therapist felt that he seemed to get the concept, and decided to up the ante. “Unh!” was no longer acceptable. Now he had to say “Guh,” or some form of the letter G sound.
It felt like we were starting all over again. Every day, we would play Blanket Swing. We would start by swinging him (still singing our silly song,) giving him a freebie before we started demanding sounds from him. He would lay there on the floor, shouting “Unh! Unh! Unh!” and get more and more frustrated that we weren’t swinging him. We stood over him, saying, “Guh! Guh! Guh!” and got more and more frustrated because what seemed to be such a simple concept to us was just so hard for him. After a couple of days, he finally copied our “Guh!” There was much praise and cheering! And of course, more swinging. (And more silly singing.) After about 2 weeks of accepting “Guh!” as a request for more swinging, the demand was increased yet again. Now, his therapist insisted that we make him say “Go!” before we give him more swinging.
And again, it felt like we were starting all over. It was frustrating, but we kept at it, because we so desperately wanted our child to talk. And again, after several days of not getting it, he finally did. “Go!” And go we did. Two months after our very first game of Blanket Swing, our son finally understood that if he used his mouth to form the word “Go!” then his parents would swing him in the blanket some more. He finally knew that he could use vocal sounds to get something that he wanted.
I remember sitting on the couch and staring out the window one rainy afternoon during this time. I should have been happy about this breakthrough, but instead I was feeling sad. Was every single word going to be this tedious and frustrating? At this rate, how long was it going to take before SB could actually communicate? If we had to teach him every word like this, he would be in 20’s before he could put together a simple sentence.
Thankfully, we did not have to teach every single word like this. We encouraged every new word with enthusiasm, and the concept finally did stick. One Saturday morning, I got out some pretend fruit, and I held up each piece and told him what it was. “Orange,” I said. “Banana.” “Plum.” “Apple.” Then, unexpectedly, he said it back to me. “Apple.” I was so excited! “Yes! Apple!” I replied. I had to think quickly. How could I reinforce this, right now? I grabbed his hand and pulled him to the kitchen with me and took an apple out of the fridge. I showed it to him and said it again. “Apple.” Then I grabbed a knife, cut off a piece, and gave it to him. This was during his pickiest eating phase, so I wasn’t sure if he was even going to eat it. He turned it over in his hand a few times, and then put it in his mouth. “Apple!” I said. “Apple,” he replied while chewing. Every time he said the word “Apple,” I gave him another piece. We did this all weekend. My husband and I were thrilled! Here was another word that he was appropriately using to get something from us. On Sunday night I spoke to my mother-in-law on the phone, and told her about our Apple Breakthrough. She expressed concern that if we gave him too much apple to eat in such a short time, it might give him diarrhea. I really didn’t care. He was TALKING TO US!
Probably the most humorous lesson here is this: Be careful what you wish for! If you met SB today at age 7, you might have trouble believing this story. The little dude never STOPS talking! Just this afternoon, our whole family went to Panera Bread for lunch. He stopped every person he saw to tell them, “Welcome to Panera Bread!” He’s our little unpaid greeter at every store and restaurant. He talked about how he was going to order a peanut butter sandwich. He talked about going to the restroom. He talked about how the milk boxes they sold at Panera Bread were the same as the ones sold by the Noodles and Company restaurant. He was fascinated by the little pagers that light up and buzz when your order is ready. Whenever a pager would go off at another table, he would point and yell, “Yay! Your food is ready!” (Thankfully, most strangers seem to find his quirks endearing.) The most ironic thing of all is that one of his current therapy programs is called “Silent Play.” Last fall we started to notice that he was truly, literally, ALWAYS talking or making some sort of vocal sound, and it was distracting in certain places, like in school and in church. So now one of the things he has to work on in his therapy sessions is to do an activity, such as a puzzle or a page in a workbook, while being completely silent. He started with one minute, and can currently do 2 minute intervals. But it’s REALLY hard for him! Some days, when it seems like his little mouth hasn’t stopped all day, I think I just might scream if I have to hear, “Hey Mommy! Watch this!” one more time. Whenever I’m feeling like screaming, and wishing he would just be quiet for a minute, I try to remind myself how far he’s come. I make myself think about the Blanket Swing game, and how long it took to hear the word “Go!” And then I’m happy to hear his voice.