April is autism awareness month.
If you’re a member of an autism family and you feel like the sentence above, in the current moment, is the punchline to a sick joke, raise your hand. Higher, so we can all see each other. High-fives all around.
I can’t speak for all families because no two examples of autism are alike–there is no “textbook case,” believe you me. But I think a lot of us with both feet in the autism world have funny mixed feelings every April. We care about awareness, and we need all the help and compassion and support we can get, and we’re grateful for every bit of it. But then there are those moments where we might be in the check-out line at the supermarket, wrung out and exhausted like most people feel by the time they get to the check-out line at the supermarket, and the cashier asks us if we’d like to contribute something for autism awareness month. So we come up with a line (in our heads or out loud depending on how we roll) that goes something like um, no thanks, gave at the office. Autism awareness, you say? Oh honey. I’m aware. Wanna see a video of my son’s last haircut? Eye roll. Exit supermarket.
But THIS month? I feel like I could scatter a box of Alpha-Bits cereal on the floor and come up with something more elegant than anything swirling around in my head right now. I’m going to try, though. Because we need each other. We ALWAYS need each other, but now more than ever. Being an autism parent is isolating when the world is not on lockdown. Now that it is, I guess for us it’s more like solitary confinement.
One day in…March was it (?)…all our kids, “neurotypical” and/or otherwise, had their last day of school, for the time being. I don’t remember what day it was. (I don’t know what day it is at this moment for that matter, but neither do any of you, high-five again.)
At any rate, our kids had their last day of school, and we knew then that the closure would be for at least two weeks. And we know now that there is no end in sight. (Deep breath….let it out…ok, continue.)
So whereas I mentioned that no two of our autistic kids are the same, there is one BIG thing a lot of them do have in common, and that BIG thing is that they handle the world a lot better with some structure and routine in it. I mean a WHOLE LOT better. Times a gazillion. It’s non-negotiable, that structure, which in our case looks something like this:
Monday through Friday, Calvin (my 14-year-old, nonverbal, gentle-giant cuddlebug) gets on the school bus at 7:30 a.m. He attends a school program that feels like it was designed with him in mind. It’s called STRIVE, which stands for Structured Teaching in a Visual Environment. A well-oiled machine consisting of his main teacher, a group of para-educators, a one-to-one aid, a music teacher, a gym teacher, an art teacher, a speech therapist, and an occupational therapist all take turns helping him learn all day long how to be happy, healthy, and sane in a world that is systematically a potential living nightmare for autistic people for a hundred trillion reasons. (These educators are paid a tiny fraction of what they are worth.) Then, at around 3 p.m., Calvin’s regular school day is over and he rides in a van to his after-school dayhab program called Club Aspire, where he continues to receive structured teaching and care, but with fewer demands, and with more play and more relaxed kinds of activities. He receives this after-school care from a loving, joyful staff (who are also paid a tiny fraction of what they are worth) that shower him with affection, but also keep him adhering to some organized routine. He’s there until 6 p.m. Then he comes home, he has some dinner, he relaxes–he may melt down a little on because he’s held himself together so beautifully all day long, learning and kicking ass like the trouper he is, but that’s ok, we work with that. Then there’s the weekend, pretty much unstructured but with some respite care thrown in here and there. Then it’s Monday and we start again.
That’s how we’ve been doing it for years. Read the paragraph above again if you want. Then imagine you’re someone who can’t communicate verbally to let people know your wants and needs. Imagine that the world is full of sensory stimuli that no one else even notices but that drives you up a tree and there’s precious little anyone can do to help you with it. Imagine that you’re in discomfort, or maybe even despair, over something you can’t express to those around you, and they’re all basically running around doing trial and error things to fix it (FIX IT FIX IT GOD HELP ME FIX IT) but they’re only making it worse, maybe, they’re never quite sure. Now imagine that your regular world, the world that you’ve come to expect to be there for you, day in and day out, because why would you not, suddenly evaporates with no warning. Maybe you understand cognitively what the pandemic is and means, maybe you don’t. Nobody around you can sense with certainty what exactly you understand and what you don’t. But chances are you have no idea what the fuck is happening or why. Or maybe you do. Either way, it’s…jarring and confusing and upside down.
So imagine what that’s like. You can’t? Me neither. I’ll never know what it feels like to be Calvin. But since that day in March, with an ever-accelerating intensity, that’s what I’ve been witness to. What we’ve been witness to. Calvin’s mother, Calvin’s father, Calvin’s sister. That’s what’s unfolded in front of us. And we are fucking lost at sea.
And let me say before I say too much more–we’re not “fucking lost at sea” because of any lack of effort on the part of those structures that have been helping Calvin all these years. Holy crap, no. They are working their asses off. My guess is they’re working some exponentially ridiculous factor more than they did before the quarantine, when they were already powerhouses of professionalism, compassion, and mad mad skills. They send us materials and tools. They call us. They email us. They meet with us onscreen. They provide and provide and provide everything they can, and we can call on them anytime and they’ll be there. They will be there. But therein lies the rub. They will be THERE. They can’t be HERE. And Calvin can’t be THERE. With all they can do, and what they do is massive, they can’t recreate what Cal has at STRIVE, what Cal has at Club Aspire. Not in our home during a quarantine.
And, baby, let me tell you, neither can I.
I’ve always been painfully aware that homeschooling is something I could never ever do. Lots of people can. Lots of people have a natural capacity to create order and structure and routine in their homes and surroundings. Imagine someone you know who fits the bill. Now imagine the complete opposite of this person and also imagine him or her looking and sounding like Animal from the Muppets, wanging on a drum set and screaming unintelligibly–and that would be me. Like everybody, I have my strengths, and I like a lot of things about myself…but hear me now and believe me later because you’ll never be invited to my house to see for sure, I am an everloving mess. I am not organized. I love structure but cannot create it myself and do my best to follow the examples and guidance of those who have those gifts so that we don’t end up living in a smoking crater. But. When it comes to creating anything that can even approximate the kind of world that Cal’s programs can create for him, folks, I’m at a loss. A super colossal loss.
So what do we do? The best we freaking can, that’s what. Because guess what else. Grace lives here. Grace is a 10th grader with about 2,000 classes on Google Classroom that she’s trying to keep up on. Independently. Grace has inherited her sense of order and organization from her mother. Lucky for Grace, she’s also an artistic phenom and all around beautiful person of light, inside and out, and she’ll make her way. But this situation…it sucks for her. It just goddamn sucks. And guess what else. The two adults who live here and want to help the two kids be nothing less than brilliant successes are themselves both doing full-time jobs from home. Mike and I are working. I’m a freelance editor and I’m working on page proofs, all the proofs I can stack up, line my office walls with, because thank God Almighty there are still books being published. Mike is a wine and spirits sales rep who’s kicking ass and taking names all day taking care of his accounts, remotely, because thank God Almighty people are still buying wine and spirits. So he and I, we work from home, we spell each other, we deal with Calvin’s issues, Grace’s too. For a few hours a week we have workers who come and help us give Cal what he needs, and those services are a godsend. Yes, we’re doing the best we can.
Is doing the best we can good enough? I’m supposed to say “Yes, of course!” Right? “You’re doing your best, Mom, it’s all you can do, it’s good enough, you’re good enough.”
Well goddammit NO. It isn’t good enough. When Calvin goes from cooing happily to suddenly having a look on his tear-stained face that signals that all the sorrows of all the universes have descended onto his shoulders and he can’t tell me why–no, it isn’t good enough. When I get emails from Grace’s teachers, kindly and compassionately asking if she’s ok because so much of her Google Classroom business hasn’t been submitted and the marking period is ending and I don’t know what to do to help her wade through the endless swamp of material that’s piled up since March whatever–no, it isn’t good enough. When I hear my exhausted husband hammering on the dishwasher like he’s fighting off an attacker while he’s supposed to be getting ready for work because the dishwasher has suddenly decided to fall out of its proper space and onto the floor, and I can feel the feelings coming off him that it’s too much, it’s just too fucking much–no, it isn’t good enough.
None of it is good enough.
What’s “good enough” when nothing makes the kind of sense it used to seem to? Some weeks ago, I went to my Tuesday night chorus rehearsal. Tuesday night chorus rehearsal is one of those things that reminds me how good it can be to be a human living amongst humans. We all need those reminders, we all get them different ways. As I left that night, I waved goodbye and blew a kiss to our beloved conductor, Stanley, one of my favorite humans on the planet. I kept my distance, because we were being a little extra careful; it was early March, no restrictions in place, just exercising caution. Stanley opened up rehearsal that night saying that he couldn’t think of anything better to do for our health and immunity than the singing we were about to do together. I couldn’t have agreed more. That was March 10. Dates mean nothing anymore, but I just looked it up on the calendar, that was the last rehearsal we had before lockdown. March 10. On April 10, Good Friday 2020, Stanley died. He’d been 10 days on a respirator because of Covid-19, and then he died. I can see the sweet happy and healthy grin he had when he caught the kiss I blew from a safe distance on March 10. And now, April has flown, Stanley is gone, and I’ll never get to sing with him again, or see the joy that almost lifts him off the podium when he leads us through performances, season after season. What’s “good enough” autism parenting when something like that stomps on your heart every time you get that little shock of memory and re-memory, several times a day…March 10 was my last rehearsal with Stanley…there won’t be any more of those.
What’s “good enough” when you check your social media and see friends who are first responders and medical workers reporting on the loss of their sisters and brothers in the field, left and right, more and more every day? What kind of day-to-day achievements feel “good enough” when you and the people you care about are wading through what feels like endless sadness on a daily basis?
What’s “good enough” when you hear from autism moms like yourself, friends of yours, who have children in residential facilities and haven’t been able to see or touch them in weeks and weeks and weeks and don’t know when they’ll see them again, because no one can come in and no one can come out? What do you say to these parents who are trying to juggle the feelings of worry about their kids’ health and safety at these facilities, the pain at being separated physically, the agonizing over how those kids are coping with the sudden absence of their parents from their lives with no way to know what, if anything, they understand? Could I bear that if I were in their place? If Calvin were living in a residential program, would I be able to get up and function with all the feelings of missing him and worrying about him and not being able to touch him or snuggle on the couch with him or tickle him, wondering if he thinks we’ve abandoned him?
Is there a “good enough” anything right now? No. Just no.
But I can’t leave you this way, can I? Because you feel it too, don’t you? Whether you’re an everloving mess like me or not, to whatever varying degree or not, doesn’t matter, does it? You feel it too. Good enough. Not good enough. Good enough. Not good enough. It plays like a broken record. It did before the quarantine, of course it did. But what did the quarantine do? It turned the volume on the stereo up to eleven. That’s what’s happened. You can’t drown it out when it’s turned up to eleven.
Hmmm. What an opportunity (she types, surprising herself, like writing things down can sometimes do for her). An opportunity? Ok that’s nuts. Opportunity for what? Give me a minute. I’m not sure yet.
Ok, I’m back and I think I’ve puzzled it out a little. “Good enough…not good enough” has been haunting us forever. Haunting me forever. And now, with it turned up to eleven, there’s nowhere to run, nowhere to hide. But now that it’s so loud I just realized something. A way to talk about it, this “good enough…not good enough.”
It’s just another lie. It’s another one of those goddamn, malicious, sinister, life-sucking lies.
Is it that simple? Can something like a global crisis, drenched in tragedy and fear, turn a lie up to eleven and make it so loud that even this everloving mess of an autism mom can see the light a little bit?
Good enough. Not good enough. Says who? Says WHO? Seriously, I want to know. Who decides? What’s the standard? Compared to what? Compared to someone’s best face on Facebook? What a slippery slope that is. Good enough is a trap. Do you love the people around you and act like it most of the time? Yes, me too. Are you doing everything you can for them until you get too tired, then refueling and going in for another round? Yes, me too.
Those parents that are separated from their kids in lockdown, they are somehow getting up and functioning. And my first responder and medical worker friends, in their grief, are getting up and functioning. And Stanley’s loved ones, including the hundreds of heartbroken choral singers and music students he’s touched over the years, are getting up and functioning.
Even me, everloving mess that I am, even I am getting up and functioning. And you are. If you can read this, if you can hear me, you’re with me somehow, and we’re making it through. Getting up and functioning. And don’t say it’s enough. Or not enough. As my Aunt Jeri loved to say, “It is what it is.” Every time I think I know what that means, and why she loved that sentence so much, I learn something new and realize I had no idea what it means, but now I do. And then something else happens, and I relearn it again. Plus somehow something more than I understood before. Lather, rinse, repeat.
We are doing it. We are truly doing it. Getting out of bed and getting things done. Sometimes even putting on shoes.
Against all odds, we’re taking care of each other, the best we know how, and we are good. Hear that? GOOD. Period. Full stop. Good enough? Screw it, “enough” can go fuck itself. Also, I love you. Thank you for seeing a little light with me. I couldn’t have done it without you.
Now turn that up to eleven.
Tracy Stroh is a freelance writer, editor, singer, and stress-crocheter. She’s working on a book with a working title of Mothering Autism: It’s Not Funny & It’s not Pretty . . . Except For When It Is. She lives in utter chaos—I mean, upstate New York—with her husband, Mike, and their two kids, Grace and Calvin.