Trunk or treat! Tornado coming through.
It’s that time of year, halloween. it’s a time of year that I have always loved, not for its scariness, but for dressing up, and being someone that you are not. You get to pretend to be a certain character, or even a natural disaster, like my son chose this year. He is fascinated with tornadoes and all kinds of natural disasters actually. Especially car crashes. I’m really glad that he decided not to go as a car crash this year.
The backstory on this costume design is that I wanted to go with it, do it yourself version. I have my mom to help, and we enjoy working together on crafts that get put to special use. Especially a Halloween costume. The last time that I made a Halloween costume was a cheeseburger that my son wore at three years old. He wasn’t thrilled with it, but he wore it for pictures, but when it came to wearing it in a pre-K Halloween parade with his classmates, mommy got to war it because he took it off. This year I was going to try that kind of costume, so he didn’t have to sit in his car seat with a big piece wrapped around him. Last year he was in Minecraft pig. It was a great costume, but huge, and definitely didn’t get to fit in the car seat. He also word for very limited period of time because it made in larger than life. He does not like the spotlight on him.
So we went to the trunk or treat hosted by my sons school, in the parking lot. If you do not know what a trunk or treat is, don’t worry this was my first Too. You get to theme out your vehicle and have kids come to collect candy. A very safe Halloween without having to go out in the neighborhood to a lot of houses. He got to see his friends and he was pretty close to the playground. Even though it was dark, the fire truck, and it’s lights lit it up so that they could play safely.
Fire truck? Yes, fire truck with flashing lights when you come in. It was sensory overload before we even started, and the DJ blasting music from the back of the parking lot with flashing lights and announcements in between his music was jaw-dropping.
For my son, it was overload before we even started. He had this costume on that we worked to put together. That could be a quick in and out. Oh. Nothing to wrap around him. I had seen do it yourself tornado costumes where you outfit a hamper, and the kid sticks his arms through the side, where you make holes through, but I could not picture my son in that. So we went for more of a poster board costume with a front and a back separate.
My mom had strong through a wire of flashing lights. That would be the lightning storm in the tornado. In the quiet of my kitchen, where we were taking pictures that was fine for my son. And he only had it on for a couple of seconds. But when it came to the loud parking lot milling about with kids and candy, and their parents in darkness with the occasional flashing light, it was too much for my son. The costume came off And he hid behind his dad. I bent down to take his hand and talk to him softly, and he seemed to be better. It took him a while, but before long kids were coming up to him and they were running around together. He would even go away from us, trying to run along with his friend. it was a lesson learned, and now we have to go back to the drawing board to design a new sensory friendly costume, this time with no lights.
Dealing with MS has its own set of challenges. Managing a child with autism that you are just learning about is difficult in itself, but when I think of all the things I deal with that are overload for me, especially clutter, and too many people to get through safely, I can get how it will be upsetting. Especially for a little kid who never had to deal with it before or learn how to manage it.
Because I manage a chronic illness, I realize that working hard to manage it helps me. We just started my son on therapy three times a week for six hours, so I know that it has to help. I’ll consider it like my own training at the gym. Which reminds me time to go!
Addendum, post-workout.: MS vs. autism spectrum disorder.
When I started this blog post, it was pretty much to summarize the events of an evening that I would not soon forget: Shaun’s first trunk or treat at his school. It was only when I got into the gym and started plowing through my exercises in the zone, in my mind woke up, it was as if I could see the subject, more clearly, and made a parallel. I realize the connection to MS that a disorder like autism has. having been diagnosed with MS, at the age of 36, I certainly did live with it for years before then, not knowing really why I was just clumsy, I would always drop stuff, and I had a recurring back issue that would not go away. I was lucky to get a diagnosed and go through rehabilitation over the years to get myself stronger with each new episode that would happen.
Having a son with autism spectrum disorder, is pretty similar to having this over arching presents that you need to manage. Unfortunately, for him, his understanding of the world is very little, let alone managing autism. He is seven years old.
When we went to the parking lot where the trunk or treat was being held, it was a dark parking lot, with much uneven pavement. That was a big challenge for me with two crutches, walking in. For my son, he was met with visual barriers, and audio disturbances. A lot of sensory clutter, and things that he would have to get around to enjoy himself.
I like it into having mobility issues, and not knowing why you just can’t manage. It’s like he is having trouble managing his world, and we have to help him make sense of it.
When he just had to takeoff the costume to be more comfortable without flashing lights on it, that he said he was embarrassed about, I realized this was necessary for him to do. There is nothing wrong with him, it’s just the way his brain is wired. There is no reason to think that the way I think is normal. There are many people who have autism who don’t even know it. Some people just may think that they’re awkward. It was thought that Einstein had it. He was an absolute genius and thought to have had high functioning autism. My son does as well, and is super smart. It’s just that he has to learn to get around his world in this shell that prevents him from enjoying it like other children, who have no problem with the lights and sounds.
It’s like me walking into a dance party, or even just a party without dancing where everybody is standing around holding drinks. I can’t hold anything except my tooth crutches. I can move, but I can’t dance like everybody else.
It made me realize that there is a definite similarities with having MS and my son, having his own challenges with autism. Lucky for him, we know more about autism than we ever did before, which is why it is much easier to be diagnosed. I am fortunate to have him enrolled in therapy, it was such a struggle during the pandemic to feel comfortable having him go to therapy, let alone have someone come to the house.
We have a six month goal, which means in the spring we will definitely see a difference in his conquering the world. And he will. So will his mom.