Sunday, February 23, 2020

The hardest part

I hear a lot about how hard it is to be an "autism parent." And it's not wrong; parenting a child with autism is playing on hard level. There are extra things to worry about and appointments to make. Potty training may take years. Sleep might be disturbed for a decade.

But the hardest part of all, I think, is the judgment of other people. Autism looks a lot like bad behavior, especially to an older generation that prizes politeness. Autistic children scream, cry, fail to sit still, won't say please and thank you, or don't play well with other kids. And so bystanders tend to look on and say, "That child is a bad child, where are his parents? Somebody should try raising that kid."

It's easy enough to shake off from strangers. But the same comes from friends or family. If I vent about some difficulty I've had, there's always somebody ready with the standard parenting advice: have you tried punishment? Have you tried boundaries? Have you tried, you know, actually raising your kid? Because from what you're saying about their behavior, it looks like you don't know what you're doing.

I went through all of this with Marko, and because I didn't have a diagnosis for so long, I often just censored myself altogether. Better not to even say how he was acting or what we were struggling with, because I knew people would blame me. In public, I was ready to defend him at all times, because people constantly tried to talk to him and would get miffed when he didn't respond. I knew that I acted differently from other parents. I knew that not all parents went to such huge lengths to keep their children happy. And I knew that I would get judgment for behaving that way.

When we were having the autism assessment, everyone was so kind. I asked many times, in worried tones, whether it was my fault. Had I been spoiling him by not subjecting him to environments that upset him? Had I hindered his education by not pushing harder at writing and reading? And they were so reassuring. They said that I had clearly sensed what kind of parenting he needed and provided it. That he was doing really well and the reason was probably me and my above-and-beyond parenting. I could have cried. All those years of bending over backward for him, being sure I was screwing him up because everyone seemed to think so, and being told it wasn't me. That I had been doing things right all along.

It's on my mind a lot because the same dynamic is happening with Jackie. I don't know yet if she has autism or anything you could diagnose. Maybe not, because as I've mentioned, autism is diagnosed mostly as a social deficit and Jackie is plenty communicative with us at least. But I do know she's not like other kids. I know that something is up, and if there's no name for it, that changes nothing about what she needs.

She needs about three times the bending over backward that Marko did. Everything in my entire day is controlled by Jackie, what she will tolerate and what she won't. I can't wear a sweater in her presence. A shower requires significant advance planning. Leaving the house may require half an hour of preparation and outfit changes and toy collecting, and even then she might need to be packed in screaming. I'm trying to wean her right now and it's so hard. She just gets upset by so many things, and there are so few that calm her down.

Yesterday I went with her to a party, and like every time I try to socialize with her around, she didn't like it much. She climbed on my head, flipped upside down, made dozens of ridiculous and contradictory demands. By the last hour she just asked to leave, over and over.

It was embarrassing, seeing her act like that while, in the same room, another three-year-old was completely entertaining himself. And knowing that many of the other adults have high standards for kids, and maybe were thinking Jackie was spoiled, that it was my fault, that kids shouldn't be so needy. Nobody said anything, this time, but it was hard to avoid that feeling of judgment.

Even my other kids sometimes say I let her get away with too much, let her have too much of what she wants. All I can say is that I've tried it before and her behavior gets ten million times worse.

Online, occasionally I vent about what a challenge she is. How much I would like to be able to just attend a school meeting or throw in a load of laundry without having to work out how to get Jackie to handle it. How tired I am of nursing her, three years in, or how much I want to sleep through the night before I'm old. Most people, to their credit, empathize. But every once in awhile someone does judge and it hurts so much. They'll say: well, with my child, I try saying no to them. Or: you're the mom, if you are tired of nursing just stop. Or: at her age she can handle not getting what she wants.

It tears me down so much, every time I hear this. Because the undercurrent is that it's my fault. That I took a normal child and spoiled her to the point that she cannot handle existing in this world. It's an awful thing to feel, and it takes hold so much because it hits a tender patch of self-doubt inside me. Because I do worry it's me. I do worry I've spoiled her. I do worry that if somehow I had been better, she could get up in the morning and go down and eat breakfast without having a wailing meltdown because I wanted to drink a cup of tea. Heck, even if it is purely her brain, maybe it's still somehow my fault because I was such a mental-health wreck while I was pregnant with her. Or if it's genetics, isn't it then my fault for getting pregnant again?

I took her to her three-year-appointment this week. I dreaded it for weeks ahead of time. What if I was honest about our struggles and the doctor said, try actually parenting her? What if I tried to explain and the doctor brushed me off and said all toddlers have meltdowns sometimes? Maybe I should just keep all that to myself and pretend she's potty-trained and weaned and sleeping through the night.

In the end, I chose to be honest. I already had Jackie thrashing in my arms and demanding to leave the room; how could I pretend I had no concerns? And the doctor was extremely kind. She said it sounded like I was doing all the right things. She said if I have concerns, it's worth it to get an assessment. She gave me a referral to an occupational therapist, saying it sounds like I need help now and not months from now when we finally get in with the psychologist.

I could have cried. After all the judgment I've had, the surprise from people when they see how she acts, and the well-meaning "well did you try . . . " comments, there is nothing in the whole world that means so much as "it sounds like you're doing all the right things."

Because when it comes down to it, the judgment is the hardest part of the whole business. Not that I can't go to social events; not that I don't get sleep at night; not the occasional days where she cries the whole time. It's the fear that I caused it, and the judgment I get from people who assume I did. Other parents get to vent about their kids, so long as everyone's kids are doing more or less the same stuff. And if your child is extra hard, you need the support of other people all the more! But if your child falls outside the norm for whatever reason, it's hard to find safe people to vent to.

Listen to a special-needs mom today, without offering any advice. It'll mean the world.

1 comment:

ficino4ml said...

Big hugs, Sheila. I appreciate your writing here and elsewhere.

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