Evenings With Autism

The reason I titled this post "Evenings With Autism" vs. "Evenings With Aaron" is because we don't typically get to spend evenings with Aaron. Autism in all it's shitty glory takes him over in the evenings...so in the spirit of venting/catharsis/stress relief/autism awareness blah blah blah...but not venting specifically about Aaron...I will vent etc. about autism.

Daddy gets home from work around 510PM. Up to that point in the afternoon my daughter is napping and Aaron is watching Special Agent Oso which he does while she naps...we call that "quiet time". We had to stop giving Aaron naps because the waking process (either us waking him or him waking on his own) ALWAYS resulted in a meltdown...not slang meltdown, oh someone made me angry ...autism meltdown... (panic/crying/screaming/inconsolable)/superfun!!), and it would take hours upon hours to get him calmed down. This was a daily thing and it was f'ing ridiculous, something in his brain does not respond well to napping. Unfortunately it took months and months of this daily torture on my precious child for me to figure that out and eliminate naps. The lesser of 2 evils became "quiet time". Aaron is shown a picture on his visual schedule of some woman with her finger to her lips "shooshing" you in to silence...and he is told that his sister is sleeping and he must either play quietly or watch TV until she wakes up although this rarely changes his level of noise....whatever, I try, she has a white noise machine while she's sleeping. The down side of "quiet time" vs. napping is that he is especially tired in the evenings.
Since he is already neurologically challenged thanks to autism, adding exhaustion to the mix adds more autism related behavior to the mix and ultimately changes Aaron's personality for the remainder of the evening.
It really starts off when Daddy gets home. We have *accidentally* created a routine of sliding Aaron across our dining room floor multiple times and then he gets chased around and tickled for about 5 minutes. We did it enough times that it became a routine and if we don't do it every single day we get about 3 hours of whiny sounds (love those annoying noises out of my non-verbal child) and American Sign Language harassment on an Everest level scale. Distractions only work for a short time. My husband recently hurt his wrist and still had to slide Aaron across the floor a bunch of times. That is not an easy task when you are impaired on one side. He simply doesn't understand that Daddy hurt himself, he doesn't understand the concept of injury he's never really injured himself...I don't know whether that is a blessing or a curse at this point...at least a past injury could have been a learning experience (lemonade out of lemons?? ha). I would do the sliding but since I have severe migraines almost every freakin day I can only do it when my head doesn't hurt or my head will literally explode all over my pretty new house...try explaining that injury to Aaron. Plus Daddy can slide him farther and faster so Daddy is better.
Now here is the part where some people would say "discipline more" "just say no" blah blah blah...and those people know nothing about autism and when I try to explain, they just don't get it and then I want to smack them. Autistic people at any age are all about routines. In the same way we make brushing teeth a routine and expect Aaron to be okay with brushing his teeth every single day at the exact same time...the reasons why are irrelevant to him (cavities/dentures/root canals/things he will never comprehend) this routine is the exact same thing as far as he is concerned. All routines are important to him, regardless of the reasons for them. His reasons for doing something are equally important as our unknown reason for wanting him to do something. Routine, routine, routine. Aaron doesn't like brushing his teeth, but if I am being lazy and try to not do it one night he will get pissed about it. If that doesn't prove the importance of routines, nothing will.
Okay now on to the personality change. This would happen anyway every day because Aaron is only 4 and has autism and is not napping, but the sliding/tickling speeds up the process for sure. We are overloading his system with stimuli and he will become overstimulated just like an infant (one of the perks of autism). When the tickling time is winding down for us, it is because Aaron is practically hyperventilating. He is like a wind up toy that you could wind up for infinity. At a certain point we decide that Aaron is just waaaaaay too wound up and we have to halt the shenanigans. We do a "3 more times, 2 more, 1 more" thing with him so he isn't just cut off...just cutting him off is the worst thing we could do. That would be like taking me in to Disneyland and 5 minutes in to it someone coming up and saying "Okay that's all for today! Get the F out!!"
He is usually upset after "1 more time" that the fun is over and has to be directed to go play with his trucks or he will just throw himself around on the floor or palm smack the windows a bunch of times. When he does finally go and play, it is usually with some aggression. He slams his cars and trucks around, his sign language signs are more exaggerated in gestures out of annoyance, he randomly walks up and pushes his sister for no reason even when she isn't trying to take his stuff, he interacts with us less on a "play" scale, stims more physically and verbally, I am definitely not allowed to sit down at all...it fills him with anxiety for some reason and he freaks out so I get to stand up until bedtime (good times), and he takes less pleasure in things he likes, he just goes from thing to thing and barely interacts with anything for longer than a few minutes which is abnormal for him. The worst thing though is the look in his eyes. He looks different, like he is just plain angry and he isn't the same Aaron. He is autism...it takes over. He very often is just "in space" checked out from reality. If Aaron reappears for any length of time it is usually short and it isn't hard for him to slide back in to his autism land.
The part I feel the worst about is that after the fun sliding/tickling time this is the Aaron that his dad gets to see most often. It's not really fair to either of them. Some might say regardless of how long it takes to break that sliding/tickling routine just break it. Yeah...I could do that after about 167 days of hyperventilating Aaron repeatedly signing the words "more please" for 3 hours every night until his knuckles bleed while I repeat the word "no" until we are all in straight jackets...and then guess what? He ends up in this mood anyway because he is 4 years old and he is just tired and autism kicks his ass, especially at the end of the day. Or we could give Aaron and Daddy this daily gift of bonding and laughter because they don't get very much quality time together. As much stress as it causes me personally, I vote for the latter.
When Aaron goes to bed I stand at his bedside...he is usually far off in space by this time...he is softly verbal stimming and I ask him to look at me. Sometimes he will sometimes he won't. The best feeling in the world is when he will and I can make this brief connection. I try not to even blink because when he does look at me it is fast and I have a limited window to get this out. I smile as big as I can and tell him "I love you, you're my best friend." I've said that to him every night since he was born. If he is still looking at me he will briefly smile back at me. Best. Feeling. Ever. I choose to believe that is his way of saying "I love you too."
So that is what evenings with autism are like.