Before I could talk

It was March of 2001. We had been planning another spring break vacation. We decided to go back and visit some friends that we visited in March of 1999, just after receiving Lukas’ diagnosis. They are old friends of Michael, which meant we were to be around a lot of loud Italians speaking in fast paced phrases and it also meant that there would be a crowd complete with food. We told Lukas of our plans.

For the first time ever, I saw real anxiety in his face. His eyes welled up and he was silent. I was puzzled.

Amy, a tutor who had been working with us for three months, had a session with him the next morning. Lukas enjoyed Amy’s company and I think that Lukas had a small crush on her. When she arrived, Lukas followed with her into the bedroom and he shut the door.

They seemed to be working together just fine. I relaxed. I had spent the previous night worrying that he was developing some sort of social anxiety. There are times that my mind finds itself imagining that autism is like Kudzu vines. One small vine might peek its way out of the soil and before you know it, this pervasive weed has taken over an entire garden. I worried that this was leading to something worse.

Just as my worries seemed to ease, Amy came into the kitchen.

“I thought I would let you know that Lukas is in the bathroom throwing up.”

“huh? Throwing up?” I asked.

“yeah. It was the strangest thing. He has been working well all morning. He has sat still and listened. We were doing the Fluff Instructions Program and he was on the fourth step when he passed by the calendar on the wall. He stood there a moment and then he came over to me and asked me if I was going to Cincinnatti too. I told him that I wasn’t because I was going somewhere else for spring break. He just looked at me and said ‘oh’ and then went to the bathroom and threw up.”

I told my tutor about our plans and about Lukas’ reaction to them. I then told her that she could do our ICPS program that we had set up. One target item was to play a game of tic-tac-toe. You would state a problem and before each player could put an X or an O on the board, they had to come up with a solution to the problem. The idea was to teach a child how to problem solve and come up to multiple solutions to a single problem.

Lukas came out of the bathroom and Amy took him to the living room. They sat down and played the game. “ He seemed to be better after that but he spent the entire morning in a sedate mood.

Cindy then arrived for her afternoon session. I told her that he was in a bummed out mood but I didn’t go into details. They worked quietly in his bedroom. It was tea time. Tea time was an afternoon event that Lukas generally enjoyed. I came in with the tray and set the tea pot and plates on his table. Lukas perked up.

It wasn’t long before Cindy came out of the room.

“What is wrong with Lukas today?”

“Why?” I asked, already knowing what the answer was going to be.

“well, we were sitting drinking the tea and he looked up and started staring at the calendar. I asked him what he was doing and he told me that he was reading it. I then looked at it with him and all I said was ‘boy, you sure have a lot of things to do. ‘ He then said ‘yeah but look. Look here. I have to go to Cincinnatti.’ He then walked out of the room and threw up.”

I told her to take it easy the rest of the day. Nothing seemed to cheer him up the rest of the day. He did his work and his compliance was better than ever. He was simply unhappy.

The next tutor for the day was Laura. She was planning on taking him to the library. On the way to the library, he stopped and looked at her. “I will miss you while I am in Cincinnatti” he said.

Laura came back from the library, frowning.

“I am so depressed. I can’t believe how sad I am. He was just so.. so.. down. He was just like Eeyore in Winne the Pooh.”

“Was it bad?” I asked.

“no. Not bad. I mean, he listened. He was so calm and quiet. It was just… sad. At one point, out of no where, he said ‘what if I can’t understand them?’. I wasn’t sure what he was talking about.”

That night, I put Lukas to bed and I began to go over reasons for his anxiety. I remembered all those internet essays from adult autistics with social anxiety. I didn’t want that for Lukas. It just did not make sense. Lukas loved to travel. He had no fear of other people’s homes or new hotels. One of Lukas’ problems was that he tended to talk too much to strangers. I would have described him as being a bit too gregarious. None of it made any sense.

I finally fell asleep. Ever since the birth of my twins, I have never slept well. I don’t fall into a deep sleep. I have often blamed this on the maternal instinct to listen for your children in the night. I heard Lukas get up from bed and use the bathroom. He then ran into our bedroom and jumped in the bed and snuggled against me. I finally got up for the day. As I got out of bed, Lukas asked if he could read some books in my bed. I went into his room and got him some books. He pulled the covers over his head and began reading. He was there for 20 minutes. I knew that the morning tutor would arrive by 8:15am so I decided to encourage him to get out of bed. I layed his clothes on the bed and told him to get dressed. He yanked the covers back.

“okay.” He said and he promptly got out of the bed and walked into the bathroom and began throwing up.

“Why are you throwing up so much Lukas?” I asked.

“I was just thinking about Cincinnatti.” He replied.

I sighed. I sat on the bed and asked him to sit next to me. I wanted to talk to him about it. I thought that perhaps we needed to come up with things he can do while there to calm himself.

Out of nowhere, Lukas interrupted me.

“mom? Remember when we first went to Cincinnatti

and I couldn’t talk?”

“couldn’t talk?”

“yeah. I couldn’t talk. I tried. I just couldn’t talk.”

It all finally made sense. Our first time in Cincinnatti was just after the diagnosis and before any meaningful intervention had begun. I often call the time before we started ABA as his “preverbal” time. Lukas was never nonverbal. He had words and he used the words he had to convey a message. I spent so much time contributing the anxiety to his autism that it didn’t even occur to me that it could be do to something else.

I was dumbfounded. Lukas remembered things from before he could communicate in complex sentences. Of course Lukas could remember those times. He may not have been able to tell me about his entire day at preschool but he could remember it. His anxiety was because Cincinnatti represented a time when he couldn’t talk. How frustrated he must have been.

I was then horrified.

“Oh My GOD!” I thought to myself. “He remembers the times when he couldn’t talk.”

I shutter to think of all the careless words that adults, especially professionals said with Lukas standing right there. When Lukas received his autism diagnosis, it became even worse. Adults chattered away about Lukas as though he couldn’t possibly understand what they were talking about.

We made the trip to Cincinnati and it was a success. He was able to talk and communicate. We paired some reinforcing activities with the trip such as a trip the nearby aquarium. Now, Cincinnati isn’t the place where he couldn’t talk but the place where he saw sharks and played video games.

Over the next year, Lukas would begin talking about m ore and more experiences.

The one that really struck me was the time he was working with his OT in our living room. He suddenly told her about the time he was stung by a bee. He told her about how it happened in Italy. How it happened in the sunroom. He told her who was in the room and what I did to help him.

I stood in the kitchen eavesdropping. It sent chills through out my body. I hadn’t thought about that moment in years. He was only three when it happened. He was crying so hard and was unable to tell me what happened. It took a neighbours child to explain.

Lukas told this story to the OT with such clarity and details. He told her how he didn’t know how to tell me what happened.

I felt for Lukas. It must have been so frustrating to live in a world where you can not communicate and to live among others who felt that this lack of communication meant that you couldn’t hear or understand. How wrong it was for me to brush off his anxiety as just another symptom of autism. There was more too it than that. I needed to learn to listen to Lukas better.