There is a calendar function on “Rethink Autism” that allows a family to track therapy sessions. It was very satisfying to look back on the months of March and April. The calendar was full of color and each day was full of completed activities. It was tangible progress.
Let me stop this for a moment. I’ve found that dealing with Autism is a very emotionally charged and subjective experience. A single event can impact your entire week and will distort your view on the prognosis. Some days, you’ll feel as if you are on the right track and others it will feel like you’ve spun your wheels for months. This makes it absolutely critical that you track progress in an objective manner and take video of milestones. Similar journaling tactics can have a positive impact for almost anyone, but I can not stress it enough for a parent fighting Autism. Someday, you’ll be depressed out of your mind and need to look back to remember how far you’ve come. It helps to even out the ups and downs to focus on the “trend.” Back to the story.
Looking back at the calendar for May and June is much more sobering. The first two weeks with Dalton were spotty and the frequency continued to decay until it eventually faded into complete blank. We still did unstructured teaching, but didn’t have time to track it. Cailyn was continuing to regress and rebel. She began to fight sleep at night and would scream, waking us and her brother. She was still refusing to do tasks that were basic to her before and she was hitting herself and biting more frequently.
Children that hurt others can be easily dissuaded from their actions, but how do you separate a child from herself? Watching the frustration and pain in her eyes as she bites into her own flesh was torture to us. We were helpless to stop it. The teeth marks and self-inflicted bruises that lined her arm were reminders that the joy was fading from our relationship with Cailyn. We needed something more than ABA alone. We needed to try to calm her behavior.
Amber had been reading all of the Autism material she could get her hands on. That included success stories of children with Autism. She was determined to try anything to help. As a result, she started Cailyn on a Gluten-free diet.
I’m not going to profess to know details about all of this. I’ve had conversations with my wife and medical professionals about any things we try with Cailyn. I enter every decision knowing potential benefit, risk, and risk mitigation. I will not, however, try to convince anyone else to try something for their child. I only serve to bring up things that helped us, so that you may also decide to have a conversation with someone much brighter than I.
Within a week of going completely gluten free, we observed Cailyn’s behavior to improve. We began to doubt what we were seeing. Was it placebo effect? Maybe. Then she started to grasp communication through sign language, which was never successful, before. Then, one day Amber was blowing bubbles for Cailyn and asked her to say “bubbles.” This was no different from an aberage day’s sequence but what followed would leave us with mouths agape.
Cailyn responded “bubbles.”
As you know, Cailyn had been making sounds and even saying full words to identify certain things. Primarily, this involved flash cards, letters, numbers, and colors. It also always happened on her terms. We could never get her to repeat anything, nor could we convince her to make a sound. We just had to be ready to react, when the sound came. By far, our longest running therapy test was to get her to repeat a simple sound on request. We went for months with almost universal 0/10 failures on that activity. She never passed a trial.
We blew some bubbles and tried again. Again, she repeated “bubbles.” We started asking her to say a ton of other things, “hi”, “happy”, “pretty”, “love”, “shoes”, “please”. She could suddenly do it all. It was like a light “flipped” on. We took a video and posted it on Facebook for the world to share in our triumph. July 9th was one of the proudest and happiest days of my life.
A few weeks later, I was in New York for work. After a week away, I came home and was greeted enthusiastically by my daughter. I began to sing. As terrible as I am, I sing to her because I had discovered that she would maintain complete silence and eye contact for certain parts of particular songs. I started with her favorite:
“Someday, I’ll wish upon a star and wake up where the clouds are far behind me. Where troubles melt like lemon drops, oh way above the chimney tops. That’s where you’ll find me. Somewhere, over the rainbow blue birds fly. If birds fly over the rainbow, why, oh why can’t I?”
A second after I finished, Cailyn’s voice breaks the silence.
“So where owa wa waybow bue bird fly.”
Amber, Cailyn’s grandparents, and I all sat there in stunned disbelief as Cailyn just smiled.