“Just” an ADHD Diagnosis (part two)

Norrine and I have often talked about how beneficial it would’ve been to have known other parents with complex ADHDers as we’ve been on this parenting journey. Neither of us had the benefit of heartfelt and telling conversations with other parents who’d traveled before us. There’s much that can be learned from another’s story. At the very least, it can remind us we’re not alone. On some days, that would’ve been more than enough.

Ali’s Story: The Long and Winding Road

It was in the toddler years that my eyebrows began to furrow more and more often. My easygoing, love bug of a baby was now exploring and adventuring in curious ways, but he was also continually pushing limits and testing me. In his pre-K classes he was loved by teachers but they would often also tell me “we’re praying for you.” He wasn’t disruptive or disrespectful – he just pushed limits constantly. He’d also walk in circles around the room a lot of the time. He did that at home also during meals. I didn’t know what to make of it.

Plans to hold him back after a stellar year of kindergarten evaporated when his teacher said he was just too smart and if he were bored it’d surely lead to trouble. He’d had an excellent year and despite some mornings of not wanting to leave me, he seemed like he was growing up in big ways. I figured his teacher, who we all adored, knew better and off to first grade he went. He had the quintessential first grade teacher we all dream of and our older child had already had her so we trusted and knew her well. Quickly we noticed major differences in drawing and writing abilities with the other children and it wasn’t too long before she called us in to say: “In my thirty plus years of teaching I’ve not seen a student with ADHD this severe.” We didn’t know what ADHD was but we listened intently because it was unheard of for teachers at this prep school to approach parents in this way. She gave us the name of a neurologist.

How could I know this would be the first of many, many doctors we would see over the next decade? We left that initial appointment being told our child was exceptionally bright and probably had ADHD. We were offered a prescription. We opted to go to our area’s flagship practice for ADHD for a second opinion. There we found the same questionnaires, a computer test for him and again were offered a prescription. We read books to gain understanding but overall I kept feeling that my child wasn’t reflected on the pages. He wasn’t hyper, destructive or overly physical and that’s what kept leaping off the pages to me as the picture of ADHD.

I remember giving him his very first ADHD stimulant. He said it made him feel like he “wanted to read a book.” Not many days later he said he felt like he “wanted to go to heaven and just live with Jesus now.” They’d said suicidal thoughts COULD be a side effect but to hear my tiny first grader talk like this was horrifying.

We’d also already begun occupational therapy after an initial consult seemed to indicate sensory processing disorder. He loved his exercise play there and it became apparent he had severe dysgraphia and some coordination issues. How did I never notice he couldn’t do a proper jumping jack? I could tell he enjoyed the giant swing and even the skin brushing the OT did but I had little understanding as to why. Later that year we moved to a neighboring city and he began second then third grade without ADHD meds after our scary side effect. Maybe continuing the OT would be enough? His super friendly and fun personality attracted lots of friends and his teachers really loved him and worked hard to keep him engaged.

He continued to work with an occupational therapist throughout elementary school. She’d never had a student go through her handwriting course more times than he did. At the end of third grade it was apparent he desperately needed to try meds again. His pediatrician started him on a new med and the side effects did NOT include suicidal thoughts so that was a welcomed plus. He saw a therapist regularly, as per the pediatrician, and after the first eval we were told: “If there were a brochure for ADHD your son would be on the cover.”

I still didn’t really understand ADHD. I didn’t even know what executive function was yet. I felt like I was relying on strangers to understand my child. The ADHD books I kept buying and reading never really reflected what I saw in my child. But here we were at our third diagnosis of ADHD.

Join us all week on the blog as we unfold our diagnosis stories. Sometimes it’s not easy to think back and recall it all – but it’s worth it to us to share it with you. We invite you to share your stories too. If you haven’t already, join our Two Moms and ADHD private page today. It’s the perfect place to share and you never know who your words may help or whose words may help you.