It's Sunday and this is always my hard day. The day that God meant for rest ends up, inevitably, being a hot mess. I think the devil must have a heyday. I can just see him now, clicking his heels, pitchfork in hand, whispering to my little guy, "go for it, she's worn down. It's totally fine to eat Instant Breakfast right out of the canister with a spoon in her bed. She's too tired to fight it!" And, sadly, I am too tired. And, finding sandlike chocolate material under the covers is not the way you want to end a long day.
With autism, the developmental milestones are not always met at the lightning speed that you would prefer. There is a reason that children develop on a continuum. Once you have had it up to your ears with one phase, they shift into something new. Not so much with autism. The rate of change can be painfully slow. I find that I have been repeating myself for quite some time now. I am saying things that would normally be dealt with in the toddler phase, but to a much older (and stronger I might add) boy. This is part of the reason autism is so exhausting, and causes me to consider an IV drip of Morphine.
When I got the diagnosis of Pervasive Developmental Disorder-NOS, I was relieved in some sense because it gave me a name for some of the harder behavior problems we were having. Even though the NOS stands for 'Not Otherwise Specified', I sometimes wonder if the psychologists behind closed doors call it, 'No Opportune Sleep', or even more so, 'Not Our Situation'. I have had some positive and negative experiences with doctors and psychologists, but no one truly gets your situation like you do. And, no one really prepared me for the side effects of PDD which are lots of repeating instructions, cross-eyed parents, high anxiety, and road rage. (okay, road rage might be a separate issue)
But, maybe it is because I am so close to it. Much like waiting for the pot of water to boil, every day can seem like an eternity. I can see change, but only when I take a few steps back and look at the bigger picture. Case in point, when Liam was in kindergarten, he became obsessed with a little boy in his class who had in Liam's words, 'straight hair'. This little boy had really thick hair that was kept pretty short. This thick hair resulted in it 'not moving' when he ran. Liam had beautiful, blond hair that had cute waves at the end. Even when cut into a little boy's haircut, there was still some movement. Each morning, it became more and more distressing to Liam when he would look in the mirror and move his head from side to side and see it 'move'. So, I had the brilliant idea of lightly spraying his hair with hairspray. Seemed harmless enough. Man, was I an IDIOT. The hairspray was a portal into maniacally needing to have hair that was pretty much glued to his head. He became so obsessed with his hair being 'straight' that if one hair was out of place, he would throw a tantrum and be out of commission for a really long time. I was now having to send hairspray to school in his backpack. He would get off the school bus with the most shellacked hair you have ever seen. It looked like a plastic wig. I won't even talk about the nightmare it was to wash it out every night. (ever had hairspray in the eyes?) So, one day I decided that this had gone a bit far. I decided that the hairspray was overtaking our lives and something had to be done. I had gotten us in this mess, so I had to get us out of it. I thought about the fact that Liam loved the calendar and remembered dates really well. So, I woke him up one morning and told him that beginning ten days from today, on May the 1st, all hairsprays would be unavailable at the stores. He blinked at me a few times and asked me why. I made up a story about how everyone was tired of hairspray and they would no longer be carrying it at any store in America. And...he bought it. We circled the day and I made sure he understood that on May the 1st he would no longer be using hairspray to make 'straight hair'. May 1st arrived, and we threw our bottle away (I prayed to God he wouldn't look under my side of the bathroom counter and see my stash). Small victory, but I took it!
Sometimes this is what I need- a big picture moment. I look back on that time and think, okay, I made it out alive. He no longer mentions 'straight hair' and only gets mildly annoyed at the occasional bed head. And, hopefully the things he is doing today will be something I can laugh about later. Here's hoping because that Morphine drip could get a little cumbersome.
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