Showing posts with label ADHD. Show all posts
Showing posts with label ADHD. Show all posts

Friday, September 2, 2022

What You Didn't See

 "Why fit in when you were born to stand out?" Dr. Suess 


To the woman who turned and stared at my son at the zoo,

  I know, I know. Open letters on the internet are so overdone. Nevertheless, I couldn't let this one go. You are just one of many, but you are the most recent. We were near the zoo exit when you witnessed my eight-year-old son have a meltdown. 

Your back was turned when it started. I guess you were waiting for your food as we were near the stands. You spun around when you heard the screaming. Sure, that's a reasonable, knee-jerk reaction. When you see the source of the screaming is a struggling child, when you see a mother struggling with her child, you could politely look away and mind your own business. Your other option is to offer a sympathetic smile and/or encouraging word. Those are the only two acceptable options I can think of.

You chose neither. You stared. No, I'm sorry, that's not accurate. You glared - a full-on, mouth opened, eyes narrowed, intense, shaming glare. You gaped at my son like he was one of the wild animals on display. Your glare was meant for me, too. Your judgement was written all over your face.

I could see the scene from your perspective - I know what you saw. You saw a mother who couldn't control her child. You saw a bratty big kid throwing a fit over ice cream. You saw a kid who was "too old to be acting like that." You saw a child who needed a firm hand and a harsh warning rather than help coping and gentle understanding.

You stared hard but you stared blindly. You saw wrong.

I know what you didn't see.

You didn't see the meticulous preparation that went into that seemingly simple zoo trip - and I don't mean just packing a backpack. With a neurodiverse child you can't just pack up and go. You need to show visuals and clearly outline expectations. You have to be hypervigilant in case of elopement or impulsivity. You have to have a backup plan and an escape plan in case it all gets to be too much. 

You'll silently but joyously celebrate every second of success, because you remember the days before diagnosis and in home therapy when you couldn't safely leave the house with your child. 

Yet, those things are not the biggest obstacle when it comes to outings with my child. The biggest difficulty we face as a special needs family is people like you.

I know what you didn't see.

You didn't see my son's autism or his ADHD because these are invisible disabilities, which left me to wonder - would you stare at a child in a wheelchair? Maybe you are the type of person who would do that, but I'll give you the benefit of the doubt and assume you're not. I truly hope you're not. The point is if you wouldn't stare at a child (or adult, for that matter) with a visible disability, you shouldn't stare at a child with an invisible disability. How would you know? How about this? Don't stare. Period. Unless you're looking at the animals at the zoo, but when we're talking about people going about their day, I really can't fathom a situation in which it's appropriate to stare. If your life is so mundane that you feel an insatiable need to stare at people, do yourself and the rest of us a favor and stay home watching reality television. 

You didn't see my son's autism, but more importantly, you didn't see him. You didn't see his excitement for the zoo or his voracious love of animals. You didn't see him defeat his anxiety to leave the house. You didn't see him carefully studying the map with his beautiful brain and successfully guiding us where we wanted to go. You didn't see him saying "hi" to the birds and imitating their unique sounds. You didn't see his determination to find the wolves or his bravery crossing the high bridge even though he's afraid of heights. You didn't see how he made sure to patiently navigate me to the elephants even though he was so anxious to see the wolves, because he knows how much I like the elephant exhibit. You didn't see him stoically navigate his disappointment when we finally reached the wolves and they weren't out. You didn't see him transition to the next animal. You didn't see him share the map with his brother. You didn't hear him laugh at the antics of the monkeys. You didn't see him handle the crowds, managing his anxiety and the sensory stimuli. 

Where there was a day full of successes, you, in your ignorance, saw only failure. You saw a failing parent and a failing child at the end of a long, hot, successful day.

You didn't see him grapple with another (small, in our eyes) disappointment when the stand was out of his favorite ice cream. You didn't hear what he heard when I told him we'd check other stands we passed to see if they had it. He expected something that didn't happen, and for a person with autism this can be the lynchpin. Perhaps to you or me not seeing wolves or the stand not having a particular ice cream bar is not a big deal. Allow me to open your eyes a bit. An individual with autism often relies on knowing what to expect and what's coming next. For my son, even a small change in plans or shift in expectations can dysregulate him. Therapy helps and he works hard at it, but he still struggles. You saw a tantrum when what you were really watching was a meltdown.

You didn't see my son's autism, but more importantly, you didn't see him. Honestly, I feel sorry for you. Your world must be very small. You stare but you are blind - blind to neurodiversity and difference. You're missing out on getting to know the outliers who have struggles, victories, and entire lives outside the periphery of your narrow vision. 

Let's replace assumptions with tolerance. Let's replace ignorance with knowledge. Let's replace judgement with compassion. Let's open our eyes and look beyond ourselves.

I feel sorry for you.

There's so much you didn't see.



Thursday, April 4, 2019

What Receiving My ADHD Diagnosis In My 30's Did for Me


They called me slow. Funny that I even remember that. Yep, I’m in my thirties still lamenting on the indignities of grammar school bullying. Sigh.

Seriously, though, that’s a cut-throat world. I couldn’t keep up with the cliques, the social cues that hovered just over my head, the expectations and assignments. I was in a foreign land feigning fluency in the language. My peers knew it, too.

I was the last to get my milk at lunch and the last to clean up. I was always behind on assignments or forgot them altogether, to the point where my teachers required me to have my Pepto-Bismol-pink assignment notebook signed. I forgot a lot of things, actually. On free dress day, I was the kid who showed up in uniform. I forgot to get my tests and permission slips signed. My fifth grade English teacher threatened me with detention if I forgot to bring my red pen to class one more time. She said she was doing me a favor and teaching me responsibilities so that as an adult I wouldn’t forget important things (like always having a red pen on me?). Spoiler alert: it didn’t work.

Ask anyone in my life if Mrs. M scared me straight in the fifth grade. Anyone who’s ever asked me (and rightfully so) if I called that person yet, saw that they called, or if I remember to bring X, you know what I’m talking about. In my “grown up” life I forget things. My keys aren’t where I swore I left them. Laundry hovers in various stages of completion, the dirty sometimes converging with the clean. I start things that I don’t finish. Making phone calls makes me squirm and I’m ALWAYS late. You might be thinking every busy, tired, frazzled, mom, insert-situation-here does these things. We all have our moments and our “stuff”. Nobody has all their shit together off of Facebook. At the risk of sounding dramatic, though, since kindergarten I’ve noticed that I struggle with things that most people can accomplish without so much thought. I’m not late because I don’t respect time and I’m inconsiderate. I don’t miss calling you back because I don’t care about you.

Detention didn’t teach me to stop forgetting things any more than those pink walk-of-shame tardy slips taught me to get it together and be punctual. Why didn’t these punitive measures work? Was I a kid who just couldn’t learn her lesson?

On the contrary, I was compliant to a fault. I wanted to do what I was supposed to do. I feared getting in trouble and I wanted to please people and meet their expectations. Spoiler alert number 2: that hasn’t changed much either. I didn’t start remembering things or better organizing. It wasn’t that I didn’t want to do theses things; it was because I couldn’t.

My peers were right; I was “slow”. I froze up timed tests. I stayed after school to finish my work. I looked around in a panic when the teacher announced five minutes left to finish the project, observing my class mates gluing on the last pompom or flipping over worksheets, when I wasn’t even half way through.

“What were you doing all that time?” the teacher would ask. I didn’t know. I still don’t

A child knows when they’re different. Instead of denying that difference, our task is to create a world where differences are recognized as assets. It’s a tough sell when peers can be so cruel, homing in on any difference they can sense. Some girls dream of becoming princesses, movie stars, dancers. I dreamt of becoming “normal”. I tried to learn the language, but the accent grew thicker as the years passed and the demands increased. I concluded I was just stupid.

I was wrong. None of the labels I was given by peers or that I gave myself were accurate: Slow, stupid, inconsiderate, flaky, absent-minded. It took nearly three and a half decades to discover the correct label for my penchant for daydreaming, inattention to detail, forgetfulness, and overwhelm-shut down cycle. Three and a half decades to find a label that fits, that explains everything. Now I know this label is ADHD (Attention Deficit Hyperactivity Disorder, inattentive type, previously known as ADD).

ADHD runs in my family, so it’s not like I didn’t know what it was. I’d even suspected it on and off throughout my adulthood, every time I reached the next arbitrary age by which I predicted I’d “have it all together”. But whenever I mentioned it, I’d hear some version of “Oh, you’re just a busy mom. It’s called pregnancy brain. It’s called ‘mom brain’. You’re just tired. Cut down on caffeine (wait, what?) You just need to get more organized and just do it. Oh, everyone thinks they have that nowadays.” In fact, when my counselor presented the diagnosis, calling me “textbook”, I was hesitant to accept it. Wasn’t I just making excuses? Not because I in anyway think ADHD is an excuse (or used as one), but years of internalizing the message of, “if I would just try harder” …. made me second guess. Was I claiming a diagnosis that I didn’t “earn”?

That last paragraph might sound really strange. I’m making an ADHD diagnosis feel like a gift or a badge of honor. Well, it is. Finally, my counselor got me to recognize and accept that I’ve been struggling with ADHD for my entire life. The struggles came to my attention when I started kindergarten and was met simultaneously with new responsibility and exposure to the development of same-age peers. By first grade I was behind, and they wanted to send me to a “special school;”. Yes, that’s really what they called it. I hate even typing it. My parents kept me at my grammar school. I’m very fortunate for my parents’ endless patience. Even without a diagnosis or much understanding of special needs or outside support surrounding them, they didn’t blame me for my difficulties. They saw how hard I tried and encouraged me to do my best.  

Let’s circle back to why I’m referring to my ADHD diagnosis as a gift and a badge of honor.

When I was diagnosed my first thought was, “So I’m not just stupid?” The diagnosis, once I “claimed” it, was nothing short of validating. My peers ran both literal and figurative laps around me (sometimes armed with pinesol spray and spit balls, but that’s another story for another day. Or not.) not because they were smarter or more enlightened. Their brains worked differently than mine. My brain worked differently from theirs. The teachers were annoyed with me not because I was a pain in the ass kid (although you might have to confirm that with my brother) but because I couldn’t keep up with my lessons. I fidgeted with my pencils and erasers, and I was always staring out the window. The math examples on the board didn’t make sense not because I wasn’t paying attention, but because I am part of the 20 percent of auditory learners. I don’t run out of mental energy after social engagements because I’m antisocial, I don’t forget thank-you cards because, I’m ungrateful or show up 15 minutes late because I’m rude.

I don’t love these things about myself and if they were easy to change I would, but that’s another way my ADHD diagnosis has freed me. I can now work on treating my ADHD so it doesn’t interfere so much in my day to day life. I can use systems to help me focus and keep things straight. I write and color code everything in a paper calendar because the notifications I set on my phone fly out of my brain the second my screen dims. I check and double check appointments. I make definitive plans and try to follow a routine. Everything must be gotten together the night before. I team up with other homeschoolers for accountability. These tools and others are just that – tools. It doesn’t mean I magically have it all together (who does?). I still have ADHD and I’m still trying. That’s where the badge of honor comes in. All those years I struggled to get through school (and life) thinking I was just dumb and slow, I had legitimate difficulties to work with. I was trying plenty hard enough even when it didn’t seem like it.

My ADHD diagnosis answers my life long question of why can’t I just do it? It helps me understand why I would flip through the science project syllabus given at the start of the school year, get knocked over by a wave of overwhelm, shut down and shove it into my backpack where I’d try to forget about it until after Christmas break Inevitably, I’d wind up cramming a semester-long project into a week, complete with many late, tearful nights. Rinse and repeat year after year. I turned in a lot of tear stained papers in middle school. Breaking down projects into more manageable tasks doesn’t happen in my unmedicated brain. I see and think about EVERYTING I HAVE TO DO, LIKE ALL THE THINGS. Then I don’t know where to start so I start with reading a book and blocking it out. The cards I write sit on my kitchen table so long it would just look weird to send it now. I mean all the steps required to write a card, seal an envelope, address it, and put it in the mail box.

I asked my therapist why I wasn’t diagnosed if I was so textbook? Sure, when I was growing up there was less awareness and accurate testing, but through college and adulthood I questioned. I’ve had psych evals that showed major depressive disorder and generalized anxiety disorder, but not ADHD. She postulated that current testing doesn’t necessarily “catch” ADHD as it presents in adult women, especially without the hyperactive peace. We’ve learned, to a degree, to compensate. Now I take a low dose stimulant and work with my therapist on coping skills. Sometimes I wonder which came first: depression and anxiety or ADHD. I’ll never know, but I do know years of being bullied for something you can’t control, and thinking you’re stupid and falling behind (no matter how many times my parents told me otherwise) does things to your psych.



Which brings me to my final point. Parents, teach your kids about differences and special needs even (especially) if it doesn’t affect your inner circle. Parents of kids with ADHD, you’re doing fine. It’s not easy, but the most important thing is your child knowing home is always a safe place where they’re loved and accepted. Parents of kids with ADHD, you may struggle with whether to medicate. You know your child best and don’t do anything you’re uncomfortable with, no matter what anyone says. Maybe for your child it won’t be called for. But if it is and you do go the medication route, please, please DO NOT FEEL GUILTY! Don’t worry about what people think. They don’t know your situation. I know giving your child a controlled substance isn’t easy and it’s not a decision you’d take lightly. But for some people with ADHD therapies simply aren’t enough. They NEED medication to level the playing field and give their brain the stimulation it is biologically unable to produce on its own. And you know what? That’s okay! If that doesn’t convince you to send your guilt packing, parents, how about this. I wish I’d had access to this medication throughout grade school, and not because of my grades. It would’ve put me on closer to level ground with my peers and maybe protected some of my confidence. Homework and tests wouldn’t have taken long if I could focus, limiting anxiety. My parents didn’t have access to this. If you do and your child needs it and your enduring some trial and error and you’re doing it, good for you. You are giving your child a precious gift. Pat yourself on the back. If you’ve chosen not to medicate your child and you’re using other therapies, good for you. You’re a fierce advocate and your child will know you always have their back. Pat yourself on yours.

Labels can be harmful if they’re over-identified with, or worse, incorrect. But the right label offers a map. It offers answers and validation. So, I truly am sorry when I don’t return your call and you still haven’t gotten your birthday card, or you’re left to wait for me yet again. I promise I’m working on these things, but in the meantime please know that it’s not you. My brain just works a little differently. It’s still my responsibility to work on these things and it’s not an excuse. But it is an answer to the “why” that I’ve been asking all my life. I have ADHD.