The last post I wrote was describing all the hassle I was going through to get insurance funding figured out for Samuel’s therapies. This was prompted by a few months worth of progressively worse behavior – meltdowns, tantrums, etc. It wasn’t that every single day was awful, but 90% of the time, a meltdown lurked under the surface just waiting to be triggered by the smallest of sparks. Of course, after a few days of hunting down services and making appointments, the booger-head had a good day. Not just a good day, a GREAT day! Don’t get me wrong; I’m not complaining! Though I do find it ironic that after going through so much trouble, bibbity-bobbity-boo! and all the troubles seem to disappear. Good thing I know better, otherwise, I’d cancel all the efforts in motion.
It’s a scientific fact that when people are sick, they are actually contagious before any of the symptoms of the sickness appear. So by the time you get a raging fever and begin tossing your cookies, you’ve already spread your yicky germs all over the place unbeknownst to you and your innocent victims, who don’t know they’re already spreading their germs all over and won’t realize it until their head is on fire, and they get to know their toilet in the most intimae of ways. Comforting, isn’t it? (Where’s my hand sanitizer and Lysol wipes?!?!!) But the point is, even though you can’t see it because the symptoms aren’t yet visible, the sickness is still there.
Before anyone gets their panties in a bunch, I am NOT calling autism a sickness.
The above description is meant only as a metaphor.
Autism is not a disease. It is a disorder because of dysfunctions taking place in the brain.
Disorder, NOT disease.
Autism is a funny thing. It plays unsolicited games of hide and seek, or peek-a-boo. Sometimes you go looking for symptoms to prove validity for a doctor (or insurance!) and they hide when you wanted them to present themselves. Sometimes they jump out at you when you were not expecting them (Peek-a-boo! I see you!) But autism itslf is constant. The symptoms, on the other hand, are fickle. They seem to have a mind of their own, and change it at will, much to the severe confusion of parents and the person experiencing the symptoms.
This is noticeable in Samuel and how he seeks and/or avoids sensory input. There are times when a slight touch does him in, and he jerks away yelling not to touch him. Other times, he lays himself all over his brother, or me, and wants to be rough-housed and tickled. One moment, a light touch is too much to handle, and the next, he wants to be swung and thrown onto the bed and wrestled. I never know what’s okay on a regular basis. But I am blessed that I can know what’s okay and when it’s okay because he lets me know in his own way. I know when he slides out from underneath my arm in a little hug or scoots away from me on the couch that that is not the moment for input. But when he come barreling into me and climbs all over me trying to wrestle me on the ground, he’s ready for some good, heavy sensory input that’s okay for him to receive from someone else. And what I love about those moments is not just the fact that he wants it, or even that he specifically sought it from me (if I happen to be the object of his desired sensory input); it’s that he trusts me. My son, who couldn’t trust me moments ago when I tried to hug him on my own volition, now trusts me. Because he chose to trust. And he trusts me.
It is in those moments when regardless of how the autism is presenting itself, whether symptoms are severe or cleared away for the moment, I have my son. He is the constant in the autism. He might act differently at different times, but he’s always the same person. He’s still my sweet Samuel. Even if he’s acting out of the need for sensory input because his neurons are vibrating and the synapses connect in that split-second to result in his action of fulfilling his sensory needs (or whatever is happening in his brain at that time due to the autism), I don’t care the how or why of it. I’m not stopping him to analyze why he wants a hug at that moment after refusing it a moment ago. I simply oblige, and gratefully fold him into my arms to squeeze, swing, throw, wrestle, tickle, laugh, and connect with my son in a way I won’t be able to 5 minutes from now.
It’s those moments that give me hope. I know that with the passing of one moment, another one won’t be far behind. Even if it’s a couple days from now, it’s still coming, and it’s a date I wouldn’t miss for the world.