He grabs my sleeve for what seems the thousandth time today (and it’s only 11:00 AM), says his word approximation for “buckets,” and looks imploringly into my eyes. The single syllable doesn’t sound much like its intended word, but I understand immediately what he wants (as I have the other 999 times,) and I gently say “later” which prompts him to walk away.
Don’t worry. He’ll be back in a minute-and-a-half.
My oldest son Justin has an OCD diagnosis along with his main diagnosis of severe autism, but frankly when he’s in the throes of organizing my husband and I don’t care which disorder is prompting this behavior. As with everything else with autism, the good and the bad, this penchant for moving things, putting them at angles, hiding them (my personal favorite as my almost fifty-year-old brain can’t function without its visual cues) and throwing them down stairs comes and goes in cycles. He’s been doing this on and off for years, but it’s been more severe during this cycle, and frankly our patience is wearing thin.
His latest desire is to reorganize the hundreds of toys we’ve saved since his infancy that are stored in our garage in bins, and he doesn’t seem to care that on most days it’s -42 degrees in there (a slight exaggeration, but that’s how it feels!) In case you’re wondering we do have a padlock on the door to keep him out, but that doesn’t keep him from asking (and asking, and asking) to be let back into organizing mecca. Frankly, if we keep him out he’ll just reorganize something else in the house (he hit my desk once, I thought my head would explode,) so there are no easy solutions.
We are trying a new medication which will take a few weeks to kick in (they always do,) and we’re having the tried and true BCBA from his school out to the house in a few weeks, so we’re on top of this latest challenge.
Two things I’ve learned for sure about autism over the last thirteen years. It’s here forever, and there’s always something.
When challenges rear their ugly heads in our home my husband and I try to find the humor in the situation if we can (Justin’s approximation for buckets sounds like “butt,” a source of endless amusement for my nine-year-old and my husband if I’m honest.) There are times when this is impossible, like when he’s been in an aggressive phase, or has simply been mostly miserable. Watching both of my kids suffer at times from their disabilities has been the hardest part of this journey, has made the logistical, financial, and physical difficulties of this disorder pale in comparison.
But sometimes (yes I just said “but”) a little levity can be found, and as he requests entrance to our frigid toy haven I try to keep this in mind, and remember this too. Some things with autism are permanent, but some, at least with our kids, seem to come and go. We’ve had entire years where our house has not been an experiment in feng shui, and although I don’t ever think this desire will completely disappear, it will most likely go into hibernation if we wait it out.
At least, as I salvage my precious sticky notes, that’s what I tell myself.
The other way I get through these difficult cycles is to lean on my “autism mommy friends,” who get that when I share how difficult this cycle is what I’m really saying is “Oh my God what if this is for the next forty years?” and talk me down from the ledge. They are often the ones who remind me of similar times that have resolved themselves, who give me the hope that this period will too.
In the meantime, while I’m waiting for this “something” to work itself out, there’s always their words of wisdom (and wine and chocolate too.) So I wait, and try to find levity where I can.
And quite honestly, sometimes I like his rearrangements better.
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