Much like the game, life with Asher has been an almighty struggle up those damn ladders, just to be tossed back down again. Sometimes the regression is small, sometimes it brings us back further than my mental wellbeing can handle.
We're having a summer of slides. As in, we're really struggling with Asher. I know this is part of it, but knowing that, never makes the sliding backwards easier. The knowledge that the regressions will happen, looms over you like a dark cloud, even in the good times. It is always there. You'd think that it would prep us for when the whole sky turns grey and opens up in a cold wet downpour, but no, we are still cold and wet.
The ramp up to this happened slowly. It started with Lola being born and the end of the normal school year. We were away from speech, OT, and Farm therapy for a while. School closed for the summer and a very abridged summer school began. And Boom! Good bye consistency.
You could feel the pressure building, so much so, that Phill and I actually fought over going to the fireworks. From the first uttering of his diagnosis, I have sworn up and down not to hide Asher from the world and to go out of my way to include him in normal life....which includes celebrations. I'm slowly ebbing away from that resolve, but dammit Asher deserved to see the fireworks.
So I brought him. Phill stayed at home with Lola and I brought my little guy to the fireworks, knowing full well that the fireworks by nature of what they are, are a sensory overkill wasteland waiting to happen. I brought him anyway, because I am too proud not to and more selfishly, there is a part of me that dreams of watching my child experience things as a normal child would, maybe this would be his moment.
The reality of how this all went down still plays through my mind. We met my sister, brother in law and Asher's cousins. The kids were all really excited. Both boys were overstimulated from the start. Like a real cheapie, I stocked up on glow sticks and swords from the Target $1 section so we wouldn't have to buy a $15 substitute when we got there. Of course, swords for the boys, hindsight really, just a bad choice. Because those damn swords.....I was poked in the eye twice, Michelle once, and Kylee jabbed in the side of the neck. Bad choice Mama, bad choice. I suppose they were marginally better than the seizure causing, light fests in a tube that other children were wielding...but I digress.
We got there early, because otherwise, NO SEAT FOR YOU. I hate getting places early with Asher. The anxiety caused by anticipation on both our parts is just agony. I was constantly aware of Asher's place in space, but part of my mind I allowed to wander and scope out the scene. The scene in front of me of other children, sitting on blankets, patiently waiting for the fireworks to begin, chatting with siblings, laughing with parents. Asher?..... shit I blinked, where the hell is he?!? Asher was so stressed by all the people, that I had to take him to pee 4 times in the 30 minutes we had to hang out before the first boom lit up the sky. 4 Times. And no we couldn't wait in the crazy long line for the porta potty each time. People in line rolled their eyes when I walked by them for a third and fourth time, leading my child to the wooded area so he could pee. Suckers, you've been in line for 30 minutes.
And this is pretty much how it went down, Asher overstimulated, me holding him down to calm his body. He needs to pee. We come back to the blanket, he is calm for two minutes. He gets up and runs off, I find him, he has to pee....rinse and repeat. It was exhausting. And meanwhile, I am acutely aware that I'm one of the only moms there having to do this. And then even worse, I'm thinking "crap Phill was right, this is going to suck"
So the show starts. We sit on the blanket, I have Asher wrapped in my arms and legs tightly, and I snuggle in close to him. I watch as the colors in the sky play across his face and I wonder for maybe the millionth time how he sees what is in front of him, how his very special brain is taking it all in and experiencing it. And I also wonder, who is getting the short end of the stick...him? Or maybe it is the rest of us. Boom boom....and I whisper in his ear, "did you see the red one and the one that looked like a smiling face?" and he tightens his hand around mine twice to say "Yes" but no words. But he is entranced with the exploding energy in front of him, I could feel the energy in his body and wonder again what is it like to actually live in Asher's body. But still in all that, I see the wonder of childhood in his eyes, the happiness, the memories forming, hopefully happy memories of a time he came to the fireworks with his Mama. Hopefully he remembers me being loving and patient. Hopefully he remembers me smiling too.
In the past 4 weeks since then, summer has just sort of gone down hill. We decided to throw him a late birthday party since I was way too pregnant in April to even consider it. The party itself went well. He played with others and seemed to have fun. Except he decided he couldn't handle anyone singing Happy Birthday. And you know, at the time I didn't think much on it, but that was the start of his auditory tolerance breakdown. Since then, every time the baby cries, you see him crawling out of his skin. It is almost like her cry hits him somewhere in his central nervous system and slowly tortures him like the scream of a banshee or a slow dragging of nails across a chalk board. And to boot, Lola is teething, so she cries a lot. Sometimes he cries too because he just can't handle. But most often he screams "Stop Crying" or he'll try to make louder noises to drown it out. The hardest for me to watch, is when he rolls on the floor crying and covering his ears. It makes me sad.
And sleep? We thought it would be the baby that kept us up all night and tortured us with good old fashioned sleep deprivation. But no, she wakes every few hours to eat, but like a real easy baby, goes right back to sleep. Asher? He can no longer sleep for more than 2 hours at a time. And it is really draining me. Every night, he crawls into bed with us at least 10 times. Each time we walk him back to his bed and take turns snuggling him until we think he is asleep...only to find him in our bed again not long after. We used to give up and let him stay with us, but he isn't sleeping even in our bed anymore and he tosses and turns and kicks and flails. He is like a zombie child during the day, he even has dark shadows under his eyes.
So we've upped the melatonin and come to a dark enough place once or twice, where we've been tempted to give him Benedryl....but no we haven't gone there. We always promised we wouldn't drug him. I think about things like Trazadone all the time. I took it for insomnia as a child. I don't know. I hate these decisions. I want to make the right choice for him, not do what is easiest for us. But this slide down, it has been long and steep....I'm exhausted. And the kicker is, as much as I want out of the downward spiral, I know climbing that next ladder is going to be HELL. I'm tired. But we move on. Eventually someone wins this fucking game right? Historically speaking, it has never been me, but hey...stranger things have happened, so I'll just keep rolling the dice and see where it takes us. Hopefully the next roll brings on a great school year, progress with ABA, speech, OT...maybe some new friends, a breath long enough that allows me to enjoy my baby before she is no longer a baby. Even if the roll just brings us to an in between space, the consistency would be nice, I'm really starting to miss that in our lives.
