When Tate was a toddler there were many things that caused him anxiety. Taking an alternate route to a familiar place could set him off. A power flicker would guarantee a meltdown. There would be crying, hyperventilating, and lots of stimming. I did not understand the real issue behind the anxiety when Tate was small. I assumed he was afraid of the dark or afraid of thunder as many young children are. He seemed so terrified at the first sign of raindrops. I wondered if he could be afraid of the color orange because detour signs seemed to cause him pain.
Because Tate did not really have conversations but mostly just talked AT us, it was hard to understand what he meant when he tried to tell us things. It was also hard to reason with Tate about anything. I was often left scratching my head, playing detective to decipher what he was trying to tell us.
Being so anxious when it looked stormy left me wondering if maybe Tate had a fear there might be a tornado since we do live in Kansas and have warnings fairly often. I also assumed he was afraid of the dark because of his reaction to a power flicker. I bought flashlights that charge in the outlet and stay lit so if the power went out it would not be completely dark. I wrote a social story about storms and the dark. I reassured him anytime he seemed anxious about the weather that our home was very safe. Yet, I could not see we had really helped him at all.
I eventually discovered Tate’s anxiety was not really about the darkness or the storm outside and definitely had nothing to do with the color orange. As I watched him react to detour signs in the road and light switches that would not respond, I came to realize Tate was really afraid of the unpredictability a power flicker or a detour sign brought. He had to be able to COUNT ON the lights when he flipped the switch. He needed to be able to COUNT ON the road that took us to his school or to the store. Tate’s world revolved around routine and sameness. When we drove a different route to a familiar location, he panicked. When the lights went out, the television stopped and the video games stopped it was all out of his control. The meltdown was not out of anger and never about the fact that a power outage had caused his movie to prematurely end, as it might have been for a typical toddler. The meltdown was out of anxiety because he did not KNOW when the power would come back on or the road would open back up. Tate could not handle the fact that the television and lights were no longer reliable or our route to the store had changed. Tate has to KNOW what comes next in order to feel secure. He needs to be able to hit “play” on the DVD player and know it will play. He needs to know we take two rights and then a left to get to his school. His world is much smaller than yours or mine.
Tate is 13 now and barely has a reaction these days when our power flickers or goes out during a storm. He never becomes anxious if we see a detour sign now either. I am elated at the progress he has made. The last few times we have had power outages at home, he retired to his bed with a flashlight and a battery operated game. He stims a little more but he does not cry or panic. There is light at the end of our dark tunnel… pun intended.
Tate still has anxiety often and sometimes there is little I can do to help. The last nine weeks of this past school year, Tate’s bicycle was at school. Bike riding was incorporated into Tate’s P.E. class at my request. Having his bicycle at the school upset Tate. His anxiety level skyrocketed and his number one topic of conversation for three or four weeks was about his bicycle. And then he stopped obsessing as if it had never been a problem. That is progress.
Our school district’s Extended School Year (ESY) began recently. ESY is just another name for summer school. We actually do not call it by either name at our house. We call it math camp. Tate does not go to SCHOOL in the summer but he is willing to participate in MATH CAMP. And as every other child is walking through the school doors to have summer school, Tate is going to “math camp.” Anything to avoid the anxiety.
Ten years with the autism diagnosis and I am still learning. The same week ESY was to begin I was going to be away from home for four or five days. I needed to prepare Tate for what to expect while I was gone. I explained he would be escorted to Math Camp by an older sibling. I showed him I had bought his favorite snacks. The more I talked the more he stimmed. His eyes were beginning to water and his face was going splotchy. I assumed he was upset because I was leaving or because summer school was starting but that was not the problem. Tate reminded me the new Sponge Bob movie would be out on Tuesday while I was gone and I had promised to take him to buy it. As soon as his older sister assured him she would take him straight from the school to Walmart, his face cleared up and his stimming stopped. It was all about the movie, of course!
A few years ago the conflicts and the anxiety were much harder to manage. Tate’s communication and my detective skills were not as developed a few years ago. Tate could not calm himself as quickly then as he can now. That light at the end of the tunnel keeps getting brighter!
If you liked this one you might like to read: Don't Touch My Skin