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The sky is broken

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I remember the sunny summer day when my daughter, Belle, stopped in her tracks in the middle of the yard. She pointed up to the sky with her popsicle and said, “Mommy look! The sky is broken!” It took me a minute to realize what she was pointing at. It was one of those white lines in the sky left behind by an airplane. She had just turned three and while I’d seen other glimpses into how she just seemed to think differently than other kids her age, this one stuck with me. It was the moment I realized she saw the world differently, too.

The following summer I walked into her four-year checkup and asked the doctor when ADHD is typically diagnosed because I was certain Belle had it. From the moment she could crawl she never stopped moving. She climbed everything. She went from crawling to running within a month’s time. Everyone who met her said “she’s so busy” after spending only a few minutes with her. Putting it simply: she was wild.

The doctor explained that a diagnosis doesn’t usually happen until first or second grade when they’re in school for full days and sitting at a desk… “this is when it becomes pretty obvious,” she explained.

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Belle was halfway through kindergarten when COVID shut down her school and she was sent home to me for what would be 6 months. Those 6 months were hard for a lot of reasons, but for Belle, they weren’t so bad. She spent most of her days playing outside. But when she went back to school full-time in the fall – to start first grade – she began to unravel.

She wasn’t sleeping well. It was next to impossible to get her dressed and out the door for school in the morning. Even the smallest ask, like putting on her knee socks, would send her into a tailspin of frustration and tears. I began to dread the 2:30pm pickup because she’d fall apart into a puddle of emotions and horrible behavior as soon as she was home.

One afternoon, I picked her up from school and she didn’t even make it out of the parking lot before the meltdown started. It was drizzling and she got a few rain drops on her. That was all it took – 30 minutes later, she finally stopped crying.

Remember that scene from Grey’s Anatomy when Meredith is holding on to an unexploded bomb inside a man’s chest cavity through hours of surgery to remove it? They finally get it out and she carefully hands it to the bomb squad guy – knowing that it’s going to explode any second. He walks away down a long corridor (and the song Just Breathe comes on) holding the bomb in his hands and then BOOM.

I was the bomb squad guy. Every day after school, waiting for the boom.

I tried everything – calming gummies, tea-time alone in the family room as a way to unwind after school – sleep gummies at bedtime – I tried talking to her about her feelings and how different school was this year. You name it, I tried it. I gave it a few months for obvious reasons: adjusting to school after being away for 6 months had to be hard on every kid, right? First grade was a big adjustment with or without a pandemic, right?

Then one afternoon in early November I took her and her sister to get fitted for new skis. Her sister, Rosie (3), sat perfectly still on the bench while the owner of the ski shop measured her tiny foot. Belle sat down, took off one shoe, saw something interesting on the other side of the store and was gone. On the way to whatever caught her eye, she stopped to try on a coat, but got distracted by the hanger. Then she saw a pair or shiny purple skis and tried to pick one up, knocking down three others. She left the pile and came to ask me a question. Without waiting for my answer, she started climbing on the bench her sister was sitting on (still with one shoe on) as if it were a balance beam.

Gosh, she doesn’t stop moving, does she?” said the owner.

No,” I said. “She never stops.”

But this seemed different. We’d been there for 10 minutes and I was already sweating. It was as if she were a caged animal who’d been let out for a brief period of time, knowing she had to go back in, yet frantically trying to figure out how to best use her time out of the cage. She was all over the place. I knew in that moment that something was wrong and she couldn’t and shouldn’t keep trying to function like this. We’d reached the point the doctor had told me to look for – the point where it had “become pretty obvious.”

More specifically, I could see that Belle had reached the point where she was frustrating herself – that’s where the daily meltdowns were coming from. When she’d cry and say “I don’t know what’s wrong” she was telling the God’s honest truth. She didn’t know what was happening and these big feelings that seemed to be taking over where out of her control. She didn’t know where they’d come from and she couldn’t regulate them or work through them on her own.

I reached out to our pediatrician the next day. Her teacher and I both filled out the Vanderbilt ADHD diagnostic questionnaire and our answers were identical.

Well,” said the pediatrician, “this looks pretty textbook.”

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So we started the long road of testing out meds. But the top two most commonly prescribed drugs (Adderall and Ritalin) proved to be a complete nightmare for her. She couldn’t sleep at all and was a zombie by day. She wasn’t eating. She complained of belly aches and headaches and feeling dizzy. She was irritable – even more than usual. She had dark circles under her eyes – because she hadn’t slept in months. She wasn’t herself and frankly I missed her. That spark that made her who she is was nowhere to be found.

It felt like the sky was broken.

Why weren’t these drugs helping? Our pediatrician was just as surprised as we were and sent us to a pediatric neurologist who would hopefully be able to better prescribe something that would help.

I gave her the whole story. There was the obvious ADHD behavioral stuff, but there were a lot of other things that struck me as off, too and I couldn’t keep making up excuses for those or explaining them away.

It wasn’t just focus issues or hyperactivity. She was mean a lot. She’d say mean things to her sister all the time and when I asked her why she said, “I know I shouldn’t say it, but I just cant stop myself.” I learned later that that was a cut and dry case of impulse control (or lack of).

She was afraid to go upstairs to her bedroom alone. Even in the middle of the day with plenty of sunlight. She wouldn’t play outside alone anymore either, even if her sister was with her. She wanted me with her at all times. Except when she got hurt. If she fell or hurt herself, she’d shut down. She’d push me away and say, “nothing happened! I’m fine!” I was supposed to comfort her and she wouldn’t let me.

She didn’t really have friends at school and didn’t seem to care. When someone would say hi to her, she’d turn around and pretend not to hear them. She’d been doing that for a long time – probably since pre-k. She was never really able to just jump right in and play or talk to other kids. She needed time to warm up and be comfortable, even with people she knew really well.

So much of this behavior broke my heart. I’ve taught both of my kids about kindness since as far back as I can remember. And now, somehow, my child was being mean and didn’t seem to care. There were so many days where I just fell apart in tears because I thought for sure I was doing something wrong.

After I’d explained this all, the neurologist said, “She definitely has ADHD. But all that other stuff you’re worried about isn’t a personality disorder, and she’s not a mean girl. She has anxiety and anxiety has a lot of complicated layers to it. And ADHD and anxiety are best friends.”

She went on to explain that because Belle was now 6.5 years old, she was old enough to realize that her brain works differently than other kids in her classroom. She could easily pick up on the fact that she didn’t finish her work on time. Or that she approached a math problem differently than the child sitting next to her. She’d been in school full time since pre-k and she’d been hearing things like “Belle, please sit down/are you listening?” for a while now. She’d glance around a classroom and wonder why no one else was having a hard time sitting and it made her anxious. And self-conscious. But she also couldn’t help the urge to move, so she'd get up and walk around. And then she’d likely get in trouble. She didn’t understand why she couldn’t control her own self and that is a scary realization for a little kid.

Social anxiety is a common symptom of ADHD as well, so making friends and interacting with kids and teachers and adults was far from easy for her. Even a friendly hello or a “Belle, come play with us” made her want to disappear – but at the same time, she wanted to play. Her mind and body were in constant conflict and she was trapped right there in the middle of it all.

After months of trial and error we finally found the combination of ADHD and anxiety meds that worked best for her. It was like a lightbulb went off inside her. She was herself again – fun, clever, thoughtful, sweet, creative. Her spark was right there shining bright. She could also finish a task and a conversation and she could sleep and play and just be a kid.

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First comes the diagnosis. Then comes meds. Then comes the long road of Now What? Followed by a heaping side of Figure It Out Yourself.

Everyone always jokes about how babies don't come with an instruction manual. But I feel like an ADHD diagnosis should. Why isn't that a thing? Even a brochure would be handy! If there is one, I never got it. Instead, the process of figuring out how we should and could support her has become my new full time job. It's complex and all-consuming to navigate through a world of stimulant meds, sensory issues, executive function delays, emotional dysregulation, inflexibility, skill deficits, meltdowns, etc...

But somewhere in the midst of research and late night google sessions, podcasts and books and teacher conferences and talking with friends and doctor visits – somewhere along the way I’ve learned the most important lesson of all: the sky is not broken. Or falling. It’s exactly as it should be – I just need to look at it a little differently in order to see what she sees.

*****

Worth noting: I don’t believe I’m violating my daughters trust by writing about her ADHD diagnosis. Some might argue that it’s her story to tell and not mine. But it IS my story, too – it’s part of my motherhood journey and this blog is about just that! More importantly, by not talking about it, I think it implies that this is a part of her that I don’t want people to know about or that she should hide. I would never want her to hide any part of who she is. Her brain is simply wired differently and the more people know that about her, the better.




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