Ah, the silence.
It is the first day back after spring break, and I am reveling in the absence of sound, the dearth of requests for juice/snack/world peace (okay, maybe not the last one, but it felt that way sometimes). Both kids are healthy and safely at school, and maybe their mommy can begin to dig out after the last three weeks.
Spoiler alert- if I put the last twenty-one days on a tv drama it would be canceled for its absurdity.
My trials began two weeks before break with my husband traveling, during which of course we had a snowstorm (thank God for good neighbors with snow blowers!). After a calm weekend I got a call on Monday from my youngest son’s school saying he had stomach pains, forty-eight hours before he was supposed to perform three times as Gaston in the school play. There ensued two trips to the ER in six hours (no, not appendicitis, which I think they could have checked for the damn first time), and an emergency call to my mom to sleep over and take care of Zach the next day. Six hours after my husband got home from the ER we were in a car to Baltimore for a round trip to see a catatonia expert we’d waited two months to meet. The next day my boy rallied and performed his heart out several times, and the following day his elder brother and I took a seven hour round trip to see his neurologist. We capped it all off by starting spring break with Justin catching a stomach flu and living in the bathroom for three days, with a spectacularly violent episode (I’ll spare you the details) on Easter morning.
I know. I couldn’t make this all up if I tried.
After Justin lost about five pounds and finally rallied we had our first “healthy/calm” day in almost a month, and my body rebelled. I haven’t been able to nap since my thirties (more than a few years ago), but the day after Easter I found myself stretched out on our couch almost all the way into slumber, to the point where Zach felt he had to hold his hand up to my nose to see if I was still breathing.
There’s not a lot of “alone time” when the kids are around.
The truth is my body just collapsed, and it took me several days to recover. I find this to be immensely annoying, as for decades I was always the girl who if she got a half-decent night’s sleep could keep going indefinitely.
I know, welcome to aging.
For once, I listened to my annoyed body and took care of my needs. The kids spent most of their vacation at home, Justin on the computer and Zach reading and watching movies with me. Of course the weather sucked which helped in my decision, but we probably could have squeezed out a day at the boardwalk or at Great Adventure. We didn’t. They were fine with it. I got (most) of my mojo back.
And it all reminded me how important it is for all of us caregivers to take care of ourselves, not just our kids.
This sentiment is not just limited to caregivers of autistic children by any means. We are a generation of parents burning the candles constantly at both ends, ever accessible to everyone with our smart phones, with a lot of pressure to do more and more for our kids. Often I’m simply overwhelmed by the sheer logistics of it all, and don’t have time to even contemplate the more daunting aspects of our lives with a severely autistic teenager. Sometimes I forget to recharge, and it always comes back to bite me, either with my falling sick or lacking patience or losing sleep over thinking about what I have to do the next day.
And for those of us contemplating lifetime care for a child or children, the stakes are even higher and much more complicated.
This is autism awareness month, and as much as I am utterly and completely aware of autism and how it affects my kids, I am also aware of how it affects me and my husband. It is imperative that we take breaks sometimes, recharge, remember who we were before autism and children came to call. I know some of you are probably thinking “how the hell can I do that when I can’t leave him/her with a sitter”. I was at that point many years ago when Justin was younger and so intensely difficult, but we kept persevering, and eventually our hard work paid off. We did find one or two brave beings willing to watch our boy no matter how challenging he became, and my husband and I would get out and have a few hours of normalcy together where we could reconnect, and oh my God, have fun.
Getting help is imperative to your physical, mental, and emotional health. Don’t stop trying until you find someone who can give you that break.
Whether your child is just getting diagnosed or is approaching puberty, caretakers’ needs are the same. Sometimes dealing with an autistic child is absolutely grueling. We caretakers have to attend to our needs so we can be the best parents possible for our children, but also, and I feel this message often gets lost, because we deserve to be happy and live our best possible lives too. Keep trying to find that person who can handle your kid for a few hours. Any time someone offers to help take them up on it, even if you’re nervous about it. At the worst you’ll get a few hours off from parenting, and at best, you might have found someone willing to come back.
Keep trying. You and your sanity are worth it.
Don’t give up.
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