
Growing up without a diagnosis
I knew I was different in kindergarten. I was clumsier than the other kids, always covered in scratches and bruises. I tripped over rocks, stairways, curbs, litter, other kids, doorways, carpets, chairs, everything. One teacher told me I was âdreamy,â by which she meant I didnât seem to see the things that happened around me. A few times I failed to register that my parents had come to pick me up even though they stood 10 feet away waving and yelling.
By the time first grade rolled around, Iâd noticed I also lost stuff more than my classmates â hair ties and brushes and books and glasses and my homework â and I got lost easily. When asked to run a single lap on the track that formed a circle around my elementary school playground, a place where Iâd spent at least an hour every school day for a year and half, I got confused and gave up.
By then Iâd learned to read. In fact, I loved reading to a degree that impressed everyone, but my timing left much to be desired. Iâd stick my nose in a thick novel as I tried to cross the street, walking toward traffic and getting pulled back by the nearest adult.
People knew a lot less about attention deficit hyperactivity disorder (ADHD) in Texas in the 90s. Or really, what they thought they knew was wrong. If anybody had asked my parents, they would have explained that I was just a little absent-minded, harmlessly weird in the way smart kids can be, in the same way they had been 20 years before. Children with ADHD, as far as all the adults in my life knew at the time, do not get straight As, do well in school spelling contests, easily memorize the content of history textbooks or obsessively read fiction aimed at adults.
But the signs were there. Not only was I absent-minded, but it was infinitely harder for me to regulate my emotions than it was for other children. I would get mad at myself for answering a homework question wrong or not being able to paint as well as I wanted to. I would get mad, then become unable to work, then melt down in yells and tears, then be even madder because I was embarrassed. I would lose it over minor annoyances that I no longer remember and find myself screaming at one of my perfectly nice teachers in some hallway, a small ashamed voice in the back of my head asking me, Why am I doing this?
Because I was so great at schoolwork, these same teachers would refer to me as âbrilliant but troubled.â But when I was upset â and I was catastrophically upset about something new on a regular basis â my work was not especially brilliant. Iâd thoroughly memorized my multiplication tables up to 12 Ã 12 = 144, but if another kid called me a name at recess (which is something that happens a lot to nerdy 10-year-old girls) Iâd forget something easy, like 5 Ã 10 = 50.
I find that when Iâm talking to other adults with ADHD, even the ones who are skeptical about my doing well in school and say things like, âbut youâre a copy editor!â my tantrums are a sort of throughline. We share the experience of being volatile children, of knowing something was wrong but not being able to put words to the problem.
Positive fixations
Unfortunately, it took me 34 years to have these sorts of conversations. First, I had to grow up.
If elementary school was hard, middle school was even harder. I didnât cry in class much, but I swore and refused to do homework or stick to a dress code. I did study, and when tested, Iâd usually do fine with the material, but my teachers were frustrated that I spent most of class doodling in the back, and even more frustrated when I managed to pass anyway.
While I was never technically kicked out of the K-12 Quaker school I attended in Baltimore, I was asked not to return for ninth grade. Going to high school at a public arts magnet was a relief. Yes, I still sometimes had meltdowns, though less often, but my teachers clearly expected the occasional breakdown from the sensitive teenage artists in their charge.
Throughout middle and high school, I had a pattern of getting deep into new topics and obsessing over them. Of course, if youâd asked me at the time, I wouldnât have recognized what I was doing as obsessing. It was just that I was the most ardent Zionist of all time, destined to move to Israel at 18 and be a soldier for the IDF, despite being a short girl with asthma. Or I would be a professional opera singer, since my voice teacher said I was good, and I therefore had to practice every day. Or, once my high school rejected me for voice and admitted me for art, I decided Iâd be a famous painter, that this was the thing that gave my life meaning, that I needed to paint in my every spare moment. But also, I loved French so much. Maybe Iâd combine my love of painting and French and move to Paris to attend art school there. Studying French was literally the most fun I could possibly have, besides painting. How did other people even focus on boring stuff like learning to drive?
Anybody on the spectrum or diagnosed with ADHD is probably nodding along by now. You see, while the stereotype about people with my cognitive disorder is weâre unable to pay attention to anything, the reality is we often hyperfocus for extended periods on specific activities. Iâm lucky that my hyperfocus brain often lights upon academic subjects that the people around me approve of, like French, journalism, creative writing, copyediting, and learning Yiddish so I could read Fiddler on the Roof, more accurately referred to as ××Ö¿×× ×ער ×××××קערâ, in the original. I ended up doing things that people find interesting and cool, like spending a chunk of my twenties working as a professional living statue or eating fire for crowds in Union Square until the cops made me stop the performance.
Iâm also deeply unlucky, because all of these so-called positive fixations have been listed back to me as reasons why I canât possibly have something called an attention-deficit disorder.
My daughter has âRock Brainâ
A lot is different in my daughter Lutaâs Michigan elementary school in 2020 from the way it was in my Texas elementary school in 1992. On Martin Luther King, Jr. day I remember I was taken to a local graveyard, where my classmates and I were told we had to celebrate something called Confederate War Heroes Day. My daughter, on the other hand, has never taken part in a mandatory celebration of slavery. Iâm also glad that while I was picked on mercilessly as the single Jewish kid in a school with nearly 600 students, my daughterâs school is all Jewish, and her classmates like her.
Unfortunately, there are parts of Lutaâs school experience that have been much harder than my own. Although I loved reading, she is powerfully dyslexic. Although my obsessions paired nicely with my classwork, sheâs far more into cats than algebra. Even though the adults and kids around me would constantly remind me I was strange, I got a lot of validation out of being good at schoolwork. Luta, like most people with ADHD, canât.
Here are the two things Luta and I have in common: high test scores and anger. Her meltdowns are every bit as epic as mine were, if not more so, shouting matches in which she assures her teachers that she wants them to die, and they try not to be too disturbed that a small child is saying that.
I remember the first psychiatrist I took her to made some attempt to comfort me by leading with her IQ score. âSheâs in the 95th percentile!â he said, showing, I thought, a little too much surprise, âbut it seems like she might be on the spectrum?â
Except the next psychiatrist, and the one after that, said she was definitely not autistic at all. They couldnât really say what she was.
Luta being weird and angry in a way that nobody could explain tracked with my own childhood experience. At first I felt resigned about it. I was a weird and angry kid who grew up to have a weird and angry kid. Now our only option was to struggle for as many years as it took for her to self-regulate enough to function in society, possibly in high school, like I did, and hope she didnât hurt herself in the meantime.
But her teachers didnât give up on her the way most of mine had, which shocked me. She got individual sessions with a resources teacher and private literacy coaching, neither of which I knew existed as a child. She even got crash courses in anger management from the school psychiatrist, who explained that a bad guy named Rock Brain was keeping her from accepting when things didnât go her way.
Luta drew a picture of Rock Brain, then another. She hasnât had any meltdowns at school this year, but the last time she came close, her classmates told her that Rock Brain was messing with her, but they knew she was strong enough to defeat him.
The teacher emailed me about this battle with Rock Brain and how supportive Lutaâs classmates had been. Teachers are, as far as I can tell, very different now. They seem to understand that bullying is bad (mine definitely didnât notice). And at Lutaâs school, they successfully prevent it, even when a child is different from others, the way Luta is and would otherwise be an appealing target.
I think Luta is happy. I think sheâs incredibly happier than I was. When we crawl into bed to watch our favorite YouTube cake decorators or when we work on a puzzle together in the living room, I think, I hope Iâm getting this right. I think, I hope she remembers how loved she was. I think, probably.
Proving myself wrong
Itâs incredibly hard to argue against the ideas we take hold of as children, especially as small children. It feels like Iâve always just known I was a girl who lost things, lost control and wasnât trying hard enough. Even now, as an adult who is only moderately clumsy and usually manages to find what I lose, I still feel that pang of shame and guilt.
Other people, Iâm aware, are much better drivers than I am. It looks different when they dance. The part of me that feels ashamed doesnât think, Iâm clumsy because I have poor executive function, but rather, Theyâre better than me. Likewise, when I lose stuff, I think about why itâs my fault. I know Iâm only supposed to let myself put things down on the kitchen table, my desk or my nightstand. If Iâd follow my own system, Iâd know where all my possessions are, but I canât because Iâm faulty.
Itâs this deep shame that keeps a person from looking at the obvious. There are words for what my daughter and I have, and those words are âattention deficit hyperactivity disorder,â or ADHD. Professionals have said these words to me many times in a variety of settings, albeit as part of a dismissal, for almost my whole life.
When my parents took me to a child psychiatrist, I heard, âShe does well in school, right? So that rules out ADD.â
When I sought counseling as a young adult who couldnât always afford rent and food and felt consumed by rage as a result, I heard, âDo you ever have trouble paying attention?â The answer was yes, but the shame had already taken hold. As a matter of reflex, I said no.
Then again, at my universityâs health center, someone told me, âI would have thought ADHD if you werenât here getting your masterâs.â And I went with that. Who doesnât want to hear that grad school can make them immune to disease and disorder?
I suspect that most people who make it into their 30s without having their ADHD, autism or other cognitive irregularities diagnosed are good at doing what I did: hate myself, feel as if I was not quite a person, and at the same time be in too much pain to admit to that anything was different about me at all. The idea of my having an actual diagnosable cognitive disorder would sometimes threaten to surface, and then my mind would go blank instead.
Turning away from my ADHD in quiet horror, forcing myself to never even think about the possibility of having it, was not working, but that didnât matter. I would have kept on doing it for the rest of my life.
But itâs different when itâs your kid.
The truth is that itâs only by googling my daughterâs symptoms that Iâve been able to understand my own. Itâs only my love for Luta that could ever make me examine the scariest parts of myself, the parts that Iâve always felt were wired wrong, the parts that engage in self-blame and self-hatred at not being able to act like a ânormalâ person, whatever a normal person even is.
So I googled. I googled everything from âangry girlsâ to âthreatening to murder babysitterâ to âwhy is my kid the worst todayâ to âchildhood behavioral disturbance maybe genetic.â These queries quickly led me to websites about diagnoses like intermittent explosive disorder and oppositional defiant disorder, and I couldnât help but notice those websites were often run by bloggers whose kids had ADHD, magazines with names like ADDitude, and organizations like Children and Adults with Attention-Deficit/Hyperactivity Disorder.
I took in this information because I had to, as a parent. And then I took action to protect my daughterâs best interests. I admitted to myself that her current therapist, a person who almost exclusively worked with younger children whoâd been diagnosed with autism, wasnât helping at all. Iâd picked this therapist, and admitting she didnât do much felt like a personal failure, like I was a bad mom. But moms donât have time to wallow in feeling like weâre bad, so I put the feelings aside and made some phone calls.
Within a day, I had an appointment with a woman who had helped children with ADHD and behavioral disturbances like Lutaâs. Now weâre on a waiting list for a new neuropsych evaluation with people who have treated girls with ADHD before.
But I didnât stop there. I couldnât stop there, because once I knew what was needed for me to be the most effective parent I could be, I had a moral obligation to follow through. If there was a way to stop leaving Lutaâs backpack on the kitchen table and taking her to school without it, to keep her safer when I drove her places, I had to do it.
And all this is how I eventually get around to my first honest conversation with a psychiatrist of my own. She quickly prescribed me amphetamine salts, which have made me feel so serene that suddenly, I can post public essays about the things I spent most of my life too scared to say, the fact that I rarely know where my phone is or what I ate for breakfast.
Iâm also a much faster worker who needs fewer breaks, but thatâs not as important to me, personally.
Whatâs important to me is I make Luta breakfast without feeling distracted or overwhelmed by the fact that I also need to find her pants. Iâm not frantic about getting ready in the morning, so I donât rush around the house or speed on the highway to her school. I take her temperature and fill out the online form her school has set up so they know nobody in our house has any COVID-19 symptoms, a task I often forgot before going on medication. I drive my daughter safely to the school where sheâs accepted for who she is, I thank her for the many ways sheâs made me better and kiss her cheek while she rolls her eyes. Then I calmly, happily watch her get out of the car and walk to class.
source https://www.programage.com/news/How_My_Child_Helped_Me_Realize_I_Have_ADHD_1605297613800481.html
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