Practice what you preach.
The words came unbidden to my mind this weekend as I watch my eldest son, who has severe autism and OCD, rearrange the pile of books on the kitchen table for the hundredth time that day. I know to you this behavior may sound benign. However, along with the rearranging comes a penchant for moving things to a new location, which can include the bathroom or shoving an important piece of paper underneath a pile of Justin’s therapy “stuff,” in other words a place where it will never be recovered. We are back where we were three months (and really two years) ago, and it literally happened overnight. One day he was fine, the next not. Once again either my husband or I need to be in the room with him, or take the risk our belongings will be trashed, or worse, hidden.
And I can tell you people, I’m just not up for it.
Of course his OCD just happened to rear its ugly head on a weekend where I have to be out of the house for the good part of seven hours with my other son, leaving my husband to stay within a five foot radius of Justin for the better part of a day. I admit, the entire time I’m at church and a Cub Scout affair only half my mind is there. I am channeling the stress my husband feels, as he can’t leave the room where Justin is on the computer (he did for two minutes Sunday morning, and came back to find my numerous sticky notes and papers in the trash,) so while I’m physically in these places, part of my heart is back home.
I hate that my son goes through this. When he’s in the throes of it there’s no joy on his face, none of the happy smiles he shares with the world when he’s on the computer, or playing the same segment of a movie on his DVD player, or watching one of his Baby Einstein movies on TV. Honestly, sometimes we feel like he’s not even really with us, and at his best, our boy is totally with us, engaged, loving.
Watching his suffering literally breaks my heart.
I know people reading this will have some heartfelt suggestions. We’ve gone the BCBA route with an excellent practitioner. We’ve tried numerous medications, and found one that for the last six months has worked. He may just need a medication adjustment, which of course means harassing his neuroped until I can get the slip for lab corp, making the appointment, telling his nurse and his teacher not to give him his lunchtime med, and picking him up early at school (because of course there’s only a one hour window in the day when the blood can be drawn to be most effective). Frankly, I am so worried we’re heading back to the travails of 2016 that I welcome all the annoying details, am happy to have something to do to move forward.
But in the back (and hell, the forefront of my mind), I know that upping his medication as we’ve been doing every three to four months might not work, or we may not even be able to up it as he might be at therapeutic limits. There literally may not be anything to do other than ride out the storm.
And despite my saying “I’m just not up for it,” the truth is I have no choice.
There are little things we can physically do. His returned desire for rearranging has force me to purge some items, which is always a good thing. We can try a few tricks that sort of worked in the past, but we’ve noticed he fixates on different things every time he goes through a period like this, and it’s impossible to predict what he’ll focus on next. Sometimes we’ve found the phone buried under a mound of trash. Furniture can be dragged into the middle of the room in an attempt at remodeled feng shui. His OCD is like playing wacamole. We never know where it will pop up next.
We can however do some things for him, and hopefully we’ll hit the jackpot of sanity like we did late last year.
But the truth is what I really need to do is remember my own words.
Even with autism and OCD things tend to come and go in cycles.
My husband and I need to tag team this so that every waking minute he’s home the “watching” doesn’t fall entirely on me.
While we’re going through this, and ALL of us go through this, we need to remember to take care of ourselves too.
I’m going to try not to get overwhelmed. I’m going to try to still revel in the moments our boy is truly here with us.
I’m going to practice what I preach.
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