Climbing Fences, Breaking Stigmas: An ADHD Journey
I remember the first time I felt my son kick me from inside my belly. It was somewhere around the half way mark in my pregnancy and KICK! I jumped and felt both surprised and excited. He kicked again, and again, and again, and again. He never stopped. (!!) He kicked so much he bruised me internally. We lovingly called him “the kickin’ chicken”. The nickname stuck for a long time.
My son has always had a lot of energy. I don’t think that’s distinctly different from most other boys. Raising him has been a wild and amazing ride. My friends have stories about him and his hilarious antics as a young child. “Is that a good decision?” I ask screaming as I catch him in the middle of scaling our 8 foot back yard fence at 3. He was always an adventurer at heart.
As he’s grown older, some of those wiggly antics have created some challenges. And like clockwork around week 3 of a new school year, I get a call from his teacher. “Just wanted to connect and share that I’m noticing that he has a hard time focusing and sitting still in class. Is this something you’re aware of?” I am never surprised and instantly reminded of him scaling the fence. “No,” I say. “This is not surprising.”
He’s 9 now, and school is getting harder. Around 3 months into 4th grade, he came home and told us that he was really struggling in class. He was starting to realize that his inability to be still and focus was inhibiting his learning, and he was starting to judge himself negatively as a result. “My brain never stops,” he said to us one night at dinner. “It’s like my thoughts are rain and it’s always raining. It makes it hard to focus and sit still.” My husband (who likely has undiagnosed ADHD) understood immediately.
His grades suffered and the school recommended their after school tutoring program. We took the opportunity, but still saw no improvement. We had always believed that he had some form of attention challenge but had never had him formally assessed. And in order to 100% qualify for an IEP / 504 accommodation plan in schools, you must have a formal diagnosis from a mental health professional. We wanted to provide him with that offering, so we started down the path.
My husband and I were both hesitant. We should have listened to our instincts. We believed our son was made exactly as he should be, but there was such significant dissonance in his ability to learn in his current school environment. They are expected to sit still and attentive for long periods of time. Movement is discouraged. Plus, many schools now engage laptops which create distractions, and children are allowed access to personal devices while in the classroom. We were hopeful that by engaging this process, we could get him the additional support and accommodation he needed to remove the dissonance and allow him to thrive. This was our hope, but we would come to realize is that this entire process made everything much, much worse.
The first step is getting a formal diagnosis. It takes months to get an appointment with a child psychologist, and it costs $4,000. Yowza. When our appointment date finally came, our son was excited and hopeful. The school experience had become one he dreaded and the entire family was ready for support and a more positive experience. At the end of the second and final assessment day over dinner, our son broke down. His cries were deep. A wound had been created. “Why did you make me do that?” he cried. “What’s wrong with me? I thought you loved me no matter what. Why do you want to change me?”
Brutal to hear, and not the intention we had AT ALL. It was at this point, we should have reversed course, but hindsight is 20/20, isn’t it?
“We love you just as you are,” we said. “We are only trying to help you get the support you need in school.” We were able to calm him down, but unfortunately the damage was done. Our son now believed he was broken. We didn’t know how deeply he felt this way, but over the next month or two it became clear.
We started low dose medication with his pediatrician with the hope it would be the turn for him to unlock new confidence in the classroom. We engaged the school leadership to kick off a 504 plan. At first, he was excited. His teacher told us he was more focused. But over the first month, we saw his personality change. He was sadder. He was angrier. His confidence plummeted. His appetite declined significantly. After several nights of tears before bed and an actual anxiety attack, we knew this wasn’t working.
We stopped the meds. After two weeks, he was eating constantly. His mood improved. He was joyful again. We saw glimpses of our son returning. This was good, but his confidence was still bruised. He started using his diagnosis as a reason why he couldn’t do things. We realized that this entire experience had changed his worldview on himself and his abilities.
I received a call from his teacher one afternoon. I got calls like this a lot. “He has been a bit wild in class the last two days. I’m not sure why, but wanted to check in with you.” As we talk she references something small. “I know this rain isn’t helping either.” A light bulb lights in my mind. “Have they been able to go outside for recess this week?” I ask. “No,” she says. “Might that be a contributor?” I ask. “Yes, I’m sure,” she says.
Let me say that I do not blame this teacher. She is operating within a system. But I might argue that the current system is broken. And as a result, new side systems like $4,000 diagnoses and drug prescriptions have popped up to support it’s deficits. And who wins in this environment? I can assure you, it’s not the child.
Let’s play a game called DID YOU KNOW.
- Did you know that kids need at least 60 minutes of moderate-to-vigorous daily movement for their health and wellness?
- Did you know that on average, elementary students only get 27 minutes of recess per day?
3. Did you know that ADHD diagnoses for children are skyrocketing in recent years?
4. Did you know that the rise in ADHD diagnoses has created $13 billion dollars in revenue for pharmaceutical companies?
So let’s connect these dots.
Kids (and especially boys) need to move. They need breaks. They aren’t getting this in schools. And then, their inability to sit still and focus prompts a need for accommodations. To get these accommodations, they need an ADHD diagnosis. They are prescribed meds. Many take these med for the rest of their lives.
It starts to look a lot like an industry, doesn’t it? A thriving one with good intentions but sometimes harmful results. Both of these things can be true at once.
Important caveat: This is our family’s experience. Not every family’s experience will look like ours. For some or many, perhaps this journey works beautifully, and that is amazing. I share our experience in the hope that maybe it could help even one other family avoid the specific experience that we have had. Every child is different, and every parent knows their own child best.
So back to our son. We are now working to reverse the negative impact created by this process. We are looking into alternative schools that promote more daily movement. We have met and engaged an AMAZING tutor. We are removing the word “ADHD” from our home. Our son is capable and we want him to stop using this diagnosis as a way to say “I can’t”. We want him to say, “I do things differently, and it’s cool.”
With these changes, we are already seeing his confidence returning. He’s charming, smart, and creative. Yes, he wiggles. Yes, he struggles to focus over long periods. But some of the best and most creative and talented minds have shared the same struggles across history. My little kickin’ chicken is different, but different is beautiful. I’ll keep telling him that.
(Additional note: My son read and consented to the sharing of this story. His exact words were “I hope sharing my experience can help someone else.” ❤)
