Maybe it wasn’t my lowest point recently— there are other moments that come to mind— but there is one in particular that stands out in stark relief in my pandemic-addled brain. The one where I stood in my bedroom, a puddle of vomit on the floor before me, a bottle of extended-release stimulant pills in one hand, and my 8 year-old having a meltdown over his inability to swallow them. This moment, these pills, were the culmination of several heartbreaking years of watching my child struggle and gradually withdraw, and several stressful months of zoom appointments and therapy and psychological testing. They held all my remaining reserves of optimism for a better future, during a time where we have all found ourselves repeatedly grasping at specters of hope, waiting, wishing that maybe this thing will be the turning point, this is where things might get better. And three of those pills were half-melted into the puddle of vomit on the floor, in some kind of cruel metaphor of the past year and a half.
Only a few days remained before my arbitrary deadline, the first day of 3rd grade, to see how my son would react to this medication, to see if this glimmer of hope was real or just another illusion, and I was determined to see it through. He had swallowed pills before and this was an obstacle I hadn’t anticipated. The reality that my perfectly calculated plan had hit a snag was settling over me like a dark storm cloud of panic.
Panic. Look, I would never claim to know what I’m doing most days, but over the years I have gained some minimal level of confidence in my parenting experience to at least be able to trust that things will work out. To not panic over minor hiccups like a little vomit on the floor. But this was a jarring sense of helplessness I hadn’t felt in a long time. It was a rare, uncomfortable and overwhelming feeling of being unmoored.
I realized, the next day, exactly why it was so jarring and unsettling. It was eerily reminiscent of having a newborn for the first time, when you don’t have the perspective to understand how fleeting every moment is and are sure you’ll never sleep again. And you find yourself googling about newborn sleep or weight gain or breastfeeding at 2am and are struck by (and a little skeptical of) the advice so casually reassuring that this is not, in fact, the end of your life, that you will get past this, somehow. And maybe that is why that moment, where I found myself googling all the pill-swallowing advice the internet could summon and panic-buying every single suggestion, much like a new mom might panic-buy all the pacifiers, is so vivid in my mind.
Because I was, I realized, a new mom, all over again. Eight years into this gig, standing before a puddle of vomit, I was now a Special Needs Mom, and this was my baptism.
There are a lot of reasons I feel weird about the label Special Needs Mom. For one, there are a lot of people who will tell you ADHD doesn’t really exist. That it’s over-diagnosed by doctors negligently indulging parental neuroses. That it’s caused by too much screen time, or withholding recess at school, or too many standardized tests, or having a boy with a summer birthday. And I’ve probably internalized that message that my son’s ADHD isn’t real and is something I could have prevented, that it’s all my fault, that I’ve failed him somehow.
And because I’ve internalized that this is maybe a fake disease, a result of the ways I’ve failed him as a mom, I feel like I’m not entitled to grieve about it, that it’s not that bad, that it’s fixable, that I should be grateful it’s not worse. There are a lot of parents of kids who have really profound disabilities, who, even with the most intensive therapies, may never live anything close to a typical life. I wouldn’t exactly call my son’s disability “invisible,” but, the challenges of medication notwithstanding, he can take a magic little pill every day that can allow him to pass as a mostly neurotypical child. And I want to acknowledge this privilege he has, and I feel a little guilty including myself in this group that represents so many diverse and all-encompassing struggles that aren’t so magically resolved.
But at the very same time, I will never feel like I can ever really relate to parents who don’t have kids with special needs, who don’t have to deal with a daily onslaught of psychiatry appointments and med refills and occupational therapy and IEP meetings and those awkward moments where your kid is just acting disruptive and you feel the compulsion to over-share and then feel guilty about it later because, can I just not accept him for who he is? Just the constant, draining mental and emotional labor of building and rebuilding the scaffolding your child needs to function in daily life that parents of typical children will never understand.
And mostly, right now, I feel weird, because I am a New Mom but also an Old Mom who, between 3 kids and 17 parenting-years under her belt, is extremely aware of how cringe I’m being just by talking about this. It’s like when you already have a toddler and the New Moms who are all the first people ever on earth to have a baby want to talk nonstop about things like how “no one tells you how hard the postpartum period is!!!” And you can barely keep yourself from rolling your eyes and responding, “are you fucking kidding me! We talked about that all the time! You just weren’t listening.”
Because, the truth is, I wasn’t listening.
I have an occupational predisposition to be cautious about environmental exposures. I avoided all medication during my pregnancy, up to and including childbirth. I breastfed my son for over a year. I don’t use nonstick pans and screen the ingredients in my personal care products. Against the advice of my realtor, I had my home, water and soil all tested for lead and took all the precautions to ensure none of my kids had measurable levels in their blood. In other words, I thought, to a certain extent, this was something I could control. This wouldn’t happen to me.
I had a stereotype in my head of what ADHD was, and it was mainly just one thing. Toddlers with ADHD climbed and jumped off furniture. Kids with ADHD were the “bad” kids who acted out and got in trouble at school. Because my child— my precious, delightful child — was not like this, the possibility of ADHD — that ADHD could look like something else— never entered into my brain. In retrospect, it’s easy to see that his physically cautious nature was a symptom of his motor challenges, a not-uncommon comorbidity, and that his hyperactivity expressed in other ways. It’s easy to see in retrospect all the ways his inattention was obvious even as an infant. For instance, I didn’t know, until my second child was born, that babies really can just sit on your lap and listen to you read a book. All the experts tell you this is one of the most important things you can do for your baby. I thought it was just another way I was failing at parenting, but it should have been a sign. I should have been listening.
His kindergarten teacher told me that he really resisted writing, and that maybe I should work on that at home. It should have been a sign. I should have been listening. But that’s ridiculous! He’s in kindergarten! Kindergartners don’t need homework! They need more time to play! That’s the real epidemic. I’d heard it in the news, in the popular media, in the highly-hyped parenting books about how American parents are doing it all wrong. All that noise validated what I wanted to hear while I tuned out the signal I should have been listening to.
When you think everything is in your own personal, individual control, everything that happens to you or your child is just the sum of parenting books and discipline techniques and mom-influencer Instagram accounts you follow, it absolves you from having to listen for the external forces in the universe sending you signs. People with disabilities (and their parents) are talking, telling you to listen to that signal, but are also very aware of how you tune it out as noise. How you want to hear what validates your prejudices. How you don’t want to confront the possibility that any of this could happen to you, too. We know you don’t want to hear that maybe you will discover in a few years that your bright preschooler has learning disabilities. Or even your healthy, typical kid could have an accident and be permanently disabled. Or get cancer.
And we also suspect that deep down you secretly resent the way accommodating our child in the community inconveniences you.
The school year was about to start, and the parent group chat was blowing up with new parents asking new parent questions, all heightened by the return to in person school in a pandemic. Another mom posted some concerns about how these changes in procedure might impact the safety of her preschooler with a disability. A few parents began to respond. I will graciously extend them the benefit of the doubt that they had good intentions in trying to assuage her. But, quite frankly, their advice was dismissive and ableist.
I’m not really one to sit idly by while I witness an injustice in the world, so I couldn’t let it go without saying something. I decided, at first, to be diplomatic— I have to coexist with these other school parents, after all— and not call the ableist parents out directly. I simply replied to the mom, to let her know that I saw her, she wasn’t alone, to offer her some help. I suggested she could look into invoking section 504 for accommodations, and that I didn’t think it was too much of a burden to let her escort her daughter in the building, breaking normal covid protocol, as a disability accommodation, since they lived in the same household anyway. It was a pretty boring, non-controversial statement.
Which is why I was taken aback by how another parent— a parent I know and respect— replied to my message. Letting another person into the building puts all the kids at risk of COVID, she said. Our teachers are professionals and we should just let them do their jobs. These are just normal new-parent jitters and she needed to get over herself (in so many words).
I should have replied: I understand your fear, these are scary times. But all children are entitled to an education, including children with disabilities who need accommodations to get that education. We are just a bunch of moms on a group chat; whether a child is entitled to an aide or an escort is determined by a legal process involving the family, medical professionals, and the school. Let’s let that process play out and in the meantime do our part to embody the inclusive and welcoming school we all hope to be.
But I couldn’t. I panicked and deleted my original message, retreating back into hiding, horrified and full of shame. It had dawned on me, in that moment: this was a preview of my future, and that future was bleak.
I had prepared myself mentally for the possibility of an adversarial process with the school to get my kid the education he is legally entitled to. And while I’ll never not be shocked by it, it is, objectively, not shocking how completely the American healthcare system fails kids (and adults) who need psychiatric healthcare. I should have guessed that other parents would actually be my worst enemy. Until that moment I was blissfully ignorant.
But very suddenly, the leaves within the swirling, steaming cup of tea that is a parent group chat had come into focus, revealing their prophecy. My kid may be a delight to me, but to everyone else, he will be a burden. In the zero-sum game of American education, parents will see the extra attention he receives not as a wholesome example of inclusiveness but as a threat. They will see him, my sweet, delightful child, as the personification of all the attention and enrichment their child isn’t receiving. I felt so naive and foolish for not realizing this earlier. And I felt ashamed that I had probably been guilty of the same ableism myself; that I had, without even realizing, internalized this idea that my kid’s privilege would insulate him from judgment and discrimination.
And once you see it, you can’t unsee it, and it colors all your interactions with parents of typical kids from then on. Every time you hear someone complain about That Kid in the class. The one who has behavior problems and disrupted the Montessori number rods lesson their attentive and well-behaved daughter was receiving and HOW will the children ever learn math with this disruptive boy in their midst. I think your perfect child will probably learn math just fine! On the other hand, I do worry about her learning empathy. Or when another mom innocently complains how the bus’s tardiness to school will impact her child’s future acceptance to the gifted program. Oh, how nice it must be to even worry about things like getting accepted to a gifted program. What is that even like! My kid’s on adderall & has no executive function skills, and I’m over here driving him to weekly therapy to get him to write just one word. Anyway, That’s why I’m worried about him being late to school! It’s not something I’m proud of. These are valid complaints, too. Our teachers are too busy and our schools are under-resourced. But it is, I realize, another line on the lengthy list of mental burdens I’ll always carry: filtering all the unwittingly hurtful small talk we encounter, for myself, but also on behalf of my son.
My son, who is doing really well, by the way. After a lot of googling and trial and error, it turned out that swallowing his medication with applesauce did the trick. He has responded well to the medication and it’s like a veil has lifted. He is like a new person who now can exist in this realm with us mere mortals. He is so proud of the things he is suddenly able to do. But he’ll always have ADHD, and while things are going well now, I’m mindful that this is all very new, and there will be challenges we haven’t even anticipated yet.
Which is why I feel the need to conclude this essay by reiterating that this all feels so weird to me. That I’m still brand new at this. I have no idea what I’m talking about compared to seasoned, battle-weary special needs parents. That I don’t even know if “special needs” is still acceptable terminology or if I’m supposed to say “disabled kid” or “kid with disabilities” or something else entirely. That I can’t even really complain because my kid has many privileges in this world; he’ll be fine, one way or another; he won’t endure nearly as many challenges as families with far more serious or life-threatening disabilities, or who are trying to navigate this morass and are non-white, impoverished, immigrant, single parent.
But I also wonder if my need to over-explain and over-apologize is just reflective of my own internalized ableism. If I’m really, deep down, just feeling shame, and am going to pass that shame down to my kid. I don’t even know. I have no idea what I’m doing. I’ll let you know when I find out.
Bounteous 