The sky is broken

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.

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.”

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.

Some kids need glasses to see better. Some kids need meds to think better. But meds don’t fix everything...and there is no magic pill. They work their own kind of magic in allowing her brain and body to function and get through the day so much easier than she would be able to without them. But she still has to get through the day and it is HARD. "Pills don't teach skills", they just give her brain the ability to learn the skills – and we have to teach them in a way that makes sense to her....and I was about to learn just how challenging that task was.

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.

Tips, resources, favorite things:

A word about meds

The process of testing out meds is HARD. I whole-heartedly believe in them because I take them myself and I know they work. Again, would you deny glasses to a child who needed them? No. I’ve also heard the comparison that ADHD kids without meds are like trying to drive a car with square wheels. You’ll still get there, but man will it be hard. Medication allows the ADHD brain to think clearly and run on round wheels.

In our experience, it was very much on me to be diligent about reporting back to the doc about how each med we tried was or wasn’t working. Trust your gut. People often worry that medication will change their child or dull their spark. If this happens, it means it’s not the right med. We tried some drugs for only 2 days at a time – that’s how quickly we could see it wasn’t working. You don’t have to try them for weeks or months to know.

Don’t get discouraged. Again, it’s HARD. We tried 7 different meds before we found the perfect combo of two (one stimulant for ADHD and one non-stimulant for anxiety). It took several months and it was draining on our whole family, but completely worth it in the end.

Therapy

Who doesn’t need therapy? Kids with ADHD have a lot of underlying “things” that can be hugely helped with therapy. Lack of self-confidence, social anxiety, understanding their own emotions and learning how to self-regulate – these are just a few of the things we’ve been working on with our therapist.

Local parents, check out Compass Counseling: http://www.socialcompasscounseling.com/individual-services

Neuropsychological Evaluation

This will teach you how your child processes information. The results of the testing can be used to inform strategies to optimize their ability to learn and build a system of accommodations in the classroom. It’s basically a deep-dive into your child’s brain and how it works. With the results, you can be a better advocate for their needs throughout every grade level. I wish I know about this testing right out of the gate. I only recently began the process of making the appointments (there are several) and the waiting lists are about 3 months long….which is typical.

ADHD Parenting Coaches

This is a thing! I repeat, THIS IS A THING. And it’s glorious. Coaching helped me understand my daughters brain better and why she did and said some of the things that bothered me most. I learned which things to let go of and why forcing something like making her dress herself was simply not worth it. I learned about her nervous system response and how it’s on high alert when we’re getting ready for school. I could go on all day about how valuable this coaching was. Now, with a deeper understanding of her and how to respond and interact with her, the tension in our home has been reduced by half…if not more. I also learned how to manage the peer relationship between BOTH of my kids so they could function better as sisters.

*I worked with Casey from At Peace Parents for coaching because she’s a friend of a friend and I loved her within seconds of our first Zoom. Casey specializes in PDA, which is a spectrum disorder, and while her expertise is not in ADHD and anxiety, there is a ton of overlap across the entire spectrum of neurodivergent brains in general. Putting it simply: she changed my entire experience as a mom in a matter of weeks. She gave me an arsenal of understanding and toolbox I’ll carry with me for LIFE. I am eternally grateful to her. https://www.atpeaceparents.com

Favorite ADHD explanation ever (I've even sent it to our principal and teachers)

https://www.additudemag.com/what-is-adhd-symptoms-hidden-parents-educators/

Useful websites

I recently found the goldmine that is The Parenting Collective:

https://thechildhoodcollective.com, as I started reading through the website and blogs I was like MY PEOPLE! And then in the same breath I was like "did I write this? Is this about my kid?" Ugh, to feel seen and heard! Am I right?! Check them out on Instagram too for a million other little nuggets of awesome @thechildhoodcollective

https://www.adhdessentials.com/services/

https://tiltparenting.com

Podcasts

I have learned SO MUCH from podcasts. Here are my favs.

Tilt Parenting: https://tiltparenting.com/podcast-about-children-with-learning-disabilities/

ADHD Essentials: https://www.adhdessentials.com/podcasts/

ADHD Experts: https://www.additudemag.com/adhd-expert-webinars-index/