We helped move R into his college dorm recently. It was a sweat fest, and the lack of AC is not even fathomable to me, but he is largely loving being there and meeting new people. We still see him semi regularly; he comes home sometimes to practice on his own piano, eat home cooked meals, shower in privacy (if you cannot imagine what measures a marginalized gender person must take to ensure their safety and dignity, well, I hope you will try), and spend some precious quality time with A. As a mom, I have to say that watching R get excited about this next phase makes me feel pretty darn good, and helps mitigate how much I miss his sweet, evil genius presence.

A, meanwhile, spent the first few days deeply mourning R’s absence. He is still very needy, especially at night, but we are proud of him for managing his emotions the best way he can. He has grasped that R is doing grown up stuff, and as a result, is trying to be more mature too. We are super tired, but not so much that we don’t notice him raising the bar on himself (Why is that always cuter and more touching when younger siblings do it?!).

I’m not going to gloss over what the last year and a half have done to bring more constraints to our already fragile equanimity. My husband and I have never been so tired in our lives, and we have to keep plodding on because the pandemic isn’t over at all, and pretending the country is ready for communal gatherings doesn’t make it true. Whatever few moments of quietude we used to have, they are long gone. Every meeting has an 85% chance of interruption. A is in full throated emotion all of the time, and even the little time he spends in the care of others is very often filled with texts and calls either asking us to intervene in a crisis, or to come get him. Nights have become snatches of sleep interlaced with vigilance towards a frequently wakeful and energetic A.

I’ve been reading Michelle Obama’s book “Becoming,” and when I got to the part where Barack was an Illinois state senator and missed a crucial crime bill vote in 1999, I could feel my nerves jangling. The Obamas had gone to Hawaii for Christmas as they usually did, and Malia (who was then eighteen months old) fell ill. Michelle O writes:

“Unspoken was the fact that he could just go. He could walk out the door and catch a cab to the airport and still make it to Springfield in time to vote. He could leave his sick daughter and fretting wife halfway across the Pacific and go join his colleagues. It was an option.”

And then she writes, and I deeply relate, and my gut said Oof:

“But I wasn’t going to martyr myself by suggesting it.”

Obama took a lot of flak for missing that vote, and was pilloried, both by the press, and by his rival in the next round of elections.

I sat breathing some love into my gut after I read that part. In the aftermath of Hurricane Sandy, we had to leave our house because we had lost power, and it was too cold to stay. A was on a feeding tube, and we didn’t have a generator, and certainly couldn’t find one on the bare, post-storm shelves. He was in a constant state of stress and frenzy, scared of the dark house, but also freaked out by all the temporary refuges we had to seek out. The twelve days we couldn’t go back home were beyond difficult. The one thing that makes doing what we do a little easier is being home, and we couldn’t do that at all. I went home only to cook A’s meals, and had to stay in my winter coat to do that, washing dishes by the light of a hurricane lamp, and whimpering as the freezing water seemed to slice through the latex gloves. Then I would run through the house, gathering clean clothes for everyone for the next few days, making sure to keep moving so that the cold couldn’t seep into my bones.

Anyway, we were staying with some very kind people, but we are not an easy family to host, and their predictable routine was very much upended by our being there (which is also why we tend to feel the most stable in our house; the obvious impact we collectively have on other households is draining for us to manage; and don’t say we shouldn’t do that emotional labor, because you know very well that most of you hold neurotypical expectations of people around you, and tend to get triggered by what you would view as weird parenting or bratty kid behavior, so we can never truly relax when we stay elsewhere).

My husband had a conference to attend in a far away country, and was going to give a talk there. And I, not unlike Michelle, was not in a situation where I could afford to martyr myself by saying Oh yes, go, save yourself and enjoy the science life, while I manage two kids and a feeding tube in someone else’s house on patchy sleep, and try not to have a nervous breakdown in front of people I don’t know well. Just the thought of doing it on my own made me want to run away and change my name and start a new life somewhere quieter.

As you can imagine, our hosts, who were two professionals, were kind of baffled as to why I would not say Oh yes, go to my husband. They told me very kindly that they would help me out, and I should in no way make him feel tied to my side when his work life was equally important.

I felt like a horrible human being for not acting like I could do it. But my husband, who lives this life with me, knew how easy it would be to unravel. So he stayed. And someone else gave his talk on his behalf. He has never given me shit for it either.

That whole experience was so destabilizing that I lost a lot of ground in my own routines of self care. Knowing how easily our lives could get further knocked around just took all of my confidence and burned it to ashes. Over the years since, I have become more withdrawn, and I admit it, I don’t give people who say harsh or taunting things to me a second chance to hurt me. I just move on. We are on our own anyway, and if leaning on other people means I have to be schooled and shamed for not being able to keep this house of cards upright by myself, I don’t want other people to get too close. I know from being in various support groups that a lot of other parents feel the same. People coming at us with their theories about autism, or how we should be peppier, or more competent, or thinner–it is a full time job building ourselves back after each blow. And don’t make me laugh by contending that moms like me should be less emotional. You work on yourself over there, and grapple with why we ghost you.

I’m writing this blog post on the same night that we had to shelter from a potential tornado. There are floods all around the state, and we are not certain of the power staying on. But I’ve come some way in being able to manage my fears, and A being older does help; he screams through change, but he tries very hard to adapt. I’m so proud of him for that.

This is why we don’t generally want to do anymore home therapy for A. He’s proven that he can shift, and we have some amount of long term vision now, where we can say Okay, this might take a long while, but we will make it through. We used to beat ourselves up for not handling meltdowns correctly, but that’s really just ableism, and an urge to control everything. And the fact that parents are told all the time that we must be DOING SOMETHING. The truth is that there IS no foolproof way to handle meltdowns, and other people probably know it too, or they wouldn’t ban A from activities and public spaces. All we can do is keep him safe and comfortable for the duration, and make sure to practice consistent behavior, and respect for his innate autistic traits. He is so smart that he eventually understands what is happening, and then he wants to be part of the solution.

The pandemic has given me a gentler perspective on our choices. We are not responding wrongly to A. We are merely hanging in there. And given the fact that human behaviors are prolonging the situation, our first duty is to keep A safe. He is vaccinated, and rarely goes into public buildings except for school and etc. Society, already discriminatory to begin with, is unlikely to become magically more inclusive now, when everyone is so stressed, so I have a giant shrug for any parts of parenting we might not be doing perfectly. We have done okay. We are doing okay.

The truth is so often that people are fine with the impact of exclusion and discrimination being borne and absorbed by individuals, rather than effecting larger social shifts. One of my kids has to strategize about taking a shower in a dorm, and about whether to disclose disability to professors so that they won’t automatically penalize neurodivergent traits. Another has to grow up without a meaningful community because people would rather we manage his sounds and behaviors away from “polite” society. Any suggestion on the part of parents or self advocates that we build different communities is often met with resistance. We have to be inspirational all on our own!

Nathan Monk (whose book I reviewed last time) talks often on social media about being dyslexic, and how, when people shame him for spelling or grammatical errors, he goes into a spiral. Then he gets a bunch of people lecturing him to talk less about his disability because he’s clearly too “sensitive” for public discourse about it.

This is all nonsense ableism. Vulnerability is a gift most people don’t deserve. If you want to carry on being part of an exclusionary world, and also don’t want to feel any discomfort by knowing what impact your indifference has on the disabled, carry on, I guess. But none of us who are trying to create a more loving, interdependent world need to enable you. The time has come for you to do some work on the person you say you want to be.

Radha.

Source:

Obama, Michelle. “Becoming.” New York: Penguin Random House, 2018.