We were out running errands on Sunday while Lil D hung out at home with a beloved care giver. I had given her different ideas of things to do to get him out of the house, since he had come home on Friday and had pretty much refused to venture out.
What’s the big deal, my husband said to me, if he just wants to stay home?
No, I stubbornly said. He should do something! We’re making our other kids get up off their butts and go out with us!
I suggested to our care giver that she show Lil D the option of going to the pool on his iPad. He’s usually all over pool-time. After presenting that option to him several times, she texted me – I showed him the pool picture and said lets go to the pool! He looked at me, laughed and said ‘no, no.’ I even asked about outside. Haha, he seems to be loving the lounging life right now.
A while later, she texted me, telling me that he was napping and should she wake him up? Seriously sleeping? I texted back. Yikes. That doesn’t bode well. Kid doesn’t nap unless he’s sick. My son has never been known to nap in the day (since he was a baby) unless he is coming down with something. This kid is constantly on the move.
Only he wasn’t sick. About 15-20 minutes later, he woke up and spent another hour lounging on the couch before getting up.
College degrees I have, but my longest-running , most useful and ever-changing cycle of study has been at the University of Lil D (and his siblings) – an infinite number of courses in his likes and dislikes, limits and nuances, methods of communication, his potential, his behaviors and what they mean and how to help assuage the numerous challenges and difficulties of him living as an autistic individual in a world that doesn’t make much sense.
Until the age of 13, I felt close to some sort of graduation in understanding Lil D’s nonverbal cues and efforts of communication. Even when we had gone through several tough months of difficulties, the months when I floundered to figure out the whys and hows and what to do to make things easier and better, when I struggled to reach my child from beneath the darkness that was pressing down upon him – even then I relied on what I knew to true about him, how he should be when he felt more calm, happier and more present. I relied on these markers to measure when we started coming out of the battle-ravaged foxhole back into the light.
But those cues and markers are changing, evolving. And I’ll admit, I’m having difficulty learning the “new Lil D.” Graduation has been pushed back. In fact, if I had been smarter in my way of thinking all along, I would’ve realized that just as it is with my “neurotypical” kids, it’s the same with D – ever changing, ever evolving, ever surprising me.He sleeps more now. Sure, some of that is because we have eliminated and changed some of his sleep supports and meds, but some of that is, well, because he is a growing 14-year-old boy. His biochemistry is changing. He tends to sleep more. Time and time again during the past several months, I’ve commented to my husband – do you know when he woke up today? Or, he’s still sleeping!
He’s also going to bed way later than he used to. That was another big thing I’ve had to adjust to. Again, due to certain sleep supports, one could nearly set an alarm by when Lil D would go to sleep. In fact, husband and I banked on these set bedtimes for all our kids – once they were all settled (often by 9 pm), we would leave my in-laws (who live with us) in charge and maybe nip out to the store or a night-time walk.
Not so much anymore. The other two still go to bed by a set time, but Lil D is sleeping later now. After several incredulous comments from me about why, WHY is he sleeping so much later and so erratically, my husband patiently told me, What did you expect? That he would be going to bed at 8:30 for the rest of his life? He’s older now. His sleep cycle is changing. We have to adjust ourselves too.
He also doesn’t want to go out with us that much these days. And yeah, a big part of that is autism and what he is able to tolerate, what makes him anxious, what sends him into sensory overdrive, what messes with his system. But let’s be real – another part of it is, well, teenagers! The dude just doesn’t want to hang out with mom and dad that much.
The past year has thrown me for many loops. You’d think by now that I would know better than to expect him, his behaviors and cues, to remain consistent. But I’ve fallen prey to that classic rite of perplexing passage that comes to all parents: The Teenage Years.
And in some ways it’s tougher on me. I am going back to the University of Lil D and taking new courses in who he is, what his behaviors mean, how to follow his nonverbal cues, when to push him, when to hold back, what to stand tough on and when to let him be the guide.
In other ways it’s tough on him. While he continues to need assistance in most things, I can see that — like any teenage boy — he wants more privacy and less presence from his mom, or any other person for that matter. And yet, he needs assistance. We still have to be there to make sure certain things are performed properly. We need to continue teaching him certain life skills and ways to deal with his changing self.
And I can see that embarrasses him. And I feel for him. I’m not making A’s these days in my classes. Maybe not even B’s. But I’m trying, son. And I’ll try harder.