Me at the door: Monkey! For the love of the lord, stop bouncing on your bed. You have school tomorrow, bud.
Pause outside the door. Not a breath too loud. Can’t let him hear me. He needs to think I’ve returned to my chair.
Not a stir. The room falls silent. Have I won? Is it over? Is it the spirit of labor day present giving me my gift?
To my chair. Slowly, as not to make a creak…. ever so slowly…. and I sit.
Silence—-silence—-sigh of relaxation—–Thump—–Thump
This is what can last up to two hours a night. It is either let him bounce on the edge of his bed non-stop, or literally get up anywhere from every half hour or so to every two minutes. You need some sort of mechanism you can turn to when you hit those bad nights. The ones where you literally get up right after you sit down over and over again. I’ve tried every suggestion and every method I could think of over the years to reduce how long it takes for monkey to settle down and go to sleep at night. Nothing works. He is a beast that can’t be tamed— he is Zuul.
So what I have learned isn’t that I should give up and just let him hop around until he passes out. I have simply learned that this is something we do in my home at night. It takes the surprise out of it, and in the process, it makes it nearly stress free believe it or not. Tiring, but not too stressful. I hope for the nights where he simply chills out and doesn’t jump. When they come, I appreciate them. I sit for like whole half hours at a time! It’s what I imagine cruises are like. The other nights (the majority of our nights) I use my mechanisms that have slowly developed over the years. They’re not for everyone but they keep it light, and that’s the point right? Keep the stress low to endure the many years of slow progress and household habits that would be so odd to the outside world.
What I do on nights like tonight is tease him. To I do this by begging him to stop kicking my ass. I do my best impression of Jim Carey and beg for mercy.
“You’re kicking my ass, do you mind?!”
He giggles, gives me a hug, I re-tuck him in for the umpteenth time, and then I return to my chair awaiting duty.
The trick is to match the tone you want when dealing with my son. I treat him like a mirror. If I want something then I need to be cool and collected, and almost insistently suggest what we should be doing as oppose to being too demanding. Now during the day hours I can push him and be demanding, but not at night. Those precious hours will determine how well equipped I will be the next day due to sleep deprivation. At night you have to play the long game. If I walk in all forceful and start telling him what to do as if I’m somehow allowed to question his holiness, during bedtime hours, I will get Keyser Soze. (I give a lot of nicknames to his different behaviors; my mechanism at work:) We get a Monkey that is gonna show me what will really is. Annnnd we will be up all night, and angry, and stressed as a group. So that’s not the best option. Instead you need a strategy, right? For me it is based on boundaries and my mechanisms to keep it comical and/or lighthearted.
What makes it ironic for me is that I am a strict parent. My son Mater and I have a great relationship and a lot of trust between us. It takes work, and in my opinion, expectations. As a result my son listens very well, helps when I ask for it, and will raise hell when he hits his teenage years lol. I can accept that. That being said, it was a very hard thing to adapt to at first with Monkey. Here I am, an old school, strict father, that expects children to mind, and I get a child that has problems he can’t control which ultimately make my desire to be listened to as a parent, impossible. Such as tonight’s topic. It wasn’t hard to motivate myself to look for ways to cope with this stress over the years. It was a matter of acknowledging that he has it worse than me. Yeah I’m up all night, but I don’t live in mental solitude like he does. That’s always rule one. And secondly, he literally doesn’t remember that I told him to stay in bed some nights. Now, when he is up every two minutes, yeah, the kid is kicking my butt and liking it. But when he slowly roars back up from a slight giggle or laugh here and there, to full-out laughing and bouncing on the edge of the bed— he worked to that. He was laying there and slowly built up with one goofy thought after another, or one funny page in his Spongebob book after another and couldn’t help it (the kids reads in the dark, I don’t know how as he has only one eye, but it works). As a parent I am going in there to tell a kid that has very little that makes him happy to stop and go to sleep. And if we have a bad day then it makes for an odd emotional issue as a parent. It’s been a difficult day and now you’re little angel comes out and wants to smile and hug, and you have to cut it off?
Because, boundaries. They’re just as much for me as the are for him.
Autistic kids do all seem to need one common thing, and that is order and repetition. In the end I keep it goofy and lighthearted for me and for my boys. Mater doesn’t need to see a stressed out father his whole childhood. He needs to see that you care for your family regardless of difficulty. Meanwhile, Monkey needs someone who will take the stress for him at times to make up for all of the times in the day that no one can. The hardest part for me as a parent is I never think I am doing any of this right. I know I keep an open mind and reevaluate our progress and methods on a regular basis. So I should feel good about that. However, you still feel like you fall short of their needs more so than not. It’s the stinging reality that you simply can’t make it better; no matter how much you love them, you can’t save them from the life they live. The aggravation that I experience from this disorder is that nothing is clear-cut, nothing makes sense from one case to the next. You have to learn at a slow grueling pace and hope that you are meeting the needs of your children in the meantime. There’s no way for me to ever rest and think I am doing it the right way, because his needs never quit changing like any other child, but more intensely.
Not sure what the point would be for a catchy summation to tie this up. If there is anything I have learned over the past decade or more it’s that patience and personal discipline will take away so much stress from life with autism. For me it is my way of using humor to keep it light. For others I can’t say. However, I have yet to meet anyone that lives with this disorder without humor. Us autistic parents are some tough people who know how to laugh at life. One thing I would suggest if you are new to someone with this disorder is to research all you can, and then still be ready to know nothing. Each case is different and nothing is more frustrating for a parent of an autistic child than some backseat driver that read an article telling you how you should be doing life. Research so you know, and then be patient so you can learn. For me it’s movie quotes, sarcasm, and hugs.