The Challenges of ADHD: What I Want Others to Know

One might think that in the land of medical diagnoses, Apert syndrome may be more challenging than ADHD. One would be wrong. (In some ways, anyway.)

Sometimes we go days without giving Apert syndrome another thought. When surgeries aren’t looming and social interactions are positive, I may even go as far as to say we “forget” Aiden even has a rare craniofacial condition. But ADHD? It’s a giant struggle each and every day.

I don’t often talk about the challenges we face with it because it seems so commonplace. Everyone either has a child with ADHD or knows someone who does. However when I think back to before we got the “formal” diagnosis and how I was at my wits end thinking “what am I doing wrong???” I decided that sharing some of the characteristics might help someone else who may be where I was 4 years ago.

Just the other day, while sitting in the waiting room of my child's psychologist, I thumbed through the book "Smart But Scattered"[1] that I pulled from the resource library. After reading the first few pages it was as if they had written about Aiden himself! The authors describe a familiar scene - telling your child to clean their room - and how that plays out for someone with ADHD. Not only is the room a disaster to begin with (because it's ALWAYS a mess), but the amount of time spent in there is minimal before they become completely overwhelmed and beg to do it later.

Okay so you may be thinking “what kid enjoys cleaning their room and does it without a fight?” True, it’s not an uncommon family struggle. But the key difference is that it is not limited to just the task of cleaning his room. It could be something as simple as telling him to brush his teeth or hang up his coat that would elicit a full-fledged foot stomping, throw-himself-to-the-ground meltdown. The more complex the task, the bigger the response.

Dealing with behavior like this is exhausting - for both parties! I would try to reason, reward or redirect each time to no avail. And I would always end up thinking “how can I be raising such a brat?” or “what am I doing wrong???” My other kids were able to regulate their emotions and follow simple commands with far less push-back so it did not make sense. I would seek feedback at school in the early years, sure that his teachers would recognize the same behavior problems we dealt with at home but they would always say he is a good kid who listens well. Good news for most, but so frustrating for me as it was proof that he COULD behave for others and yet was CHOOSING to misbehave for me.

Something had to give.

When Aiden was in 2nd grade, his teacher and I discussed the possibility that we could be looking at ADHD. I was never one for jumping into medication as a solution and still wasn’t educated enough about ADHD to know if that’s what we were dealing with definitively. At one point, however, his teacher suggested it may be a good idea to have him formally evaluated. I scheduled an appointment with a child psychologist who specialized in ADHD.

The testing consisted of a few questionnaires - one to be completed by his teacher and one by a parent - as well as a full day of evaluation in the psychologists office. There were online assessments, IQ tests, and observations of emotional and social reasoning skills. A couple weeks later the results were calculated and a follow-up appointment was set to discuss. I remember walking in and asking “well, does he have ADHD?” I’ll never forget her response. The psychologist said “Not only does he have it, the severity is pretty significant”. I burst into tears and she put her hand on my shoulder to comfort me. “It’s okay,” she said, “we will

figure it all out.” However I wasn’t crying out of fear or disappointment. I was crying in relief. All this time I wondered why he couldn’t just behave! And now I knew it wasn’t his fault or mine. The diagnosis meant there would be a course of treatment to improve things. Amen!

Right after the relief, I immediately wondered "where do we go from here?" Still hesitant to medicate, I began researching ADHD a little more. By the time 3rd grade rolled around, we had  updated his IEP to include the diagnosis, implemented fidgets in the classroom, and put a clear plan in place as to how the teacher would help redirect Aiden when he would get off task. It worked for a while, but it became clear that those measures simply wouldn't be enough. His grades were being negatively impacted due to attention and focus issues and he was becoming a distraction to his peers. We collectively agreed that perhaps medication was the next step. 

I started to research again and came across information about a genetic test that would help determine which ADHD medication would be best suited to Aiden's particular genetic makeup. Unfortunately, most of those tests were not covered by insurance and the out of pocket cost was more than $1000! One of the labs I spoke with directly told me to look into an over the counter version that was offered at some local drug stores. I called around and found that Rite Aid had the test! It was a simple swab, done right there in the store, that was then sent off for the genetic results. So I hurried to Rite Aid and had it done immediately for just $75. (Which was a good thing because I heard shortly after it was discontinued there and wouldn't be offered anywhere).

A few weeks later the results were received! It clearly labeled each type of ADHD medication and color coded them according to which ones were recommended for Aiden. This gave us a perfect starting point on which medication to start with. I say starting point because as I would learn very quickly, even with this extra information, ADHD medication is highly individually sensitive. What works for one child will definitely not work for every child. And furthermore, what works for one child may not work for that SAME child several months later. Getting the type and dosage right would prove to be quite an ongoing challenge. 

Aiden is currently on Vyvanse daily and a small dose of Adderal Monday through Friday at school. We recently added a new "medical food" supplement called Vayarin as well. We have to monitor the potential side effects - trouble sleeping, weight-loss (he cannot afford to lose any at all as he is currently on the very low end of the growth chart), moodiness, etc. and with frequent communication with his teachers, we are doing our best to manage ADHD in a way that will help him succeed both at school and at home.

I share all of this so that others are aware of and able to recognize some of the characteristics of ADHD in their own children or in others and to help people understand that:

1) ADHD is a neurological deficit - it isn't "made up", it isn't meant to excuse poor behavior and while some may say it is "overdiagnosed" that doesn't mean it isn't a very real condition for many.

2) Medication isn't a cure-all for ADHD, but it certainly can help. Don't be afraid to try it! I was hesitant for YEARS...and then once I saw how having the proper medication helped Aiden reach his potential in the classroom I felt guilty that I waited so long. 

3) Treating ADHD requires a LOT of patience and isn't an exact science. There is no one-size-fits-all solution. It will take a combination of doctor visits, therapy, interventions at school, medication and diet changes and the amount of each needed will constantly change.

I continue to research ADHD so that I can learn how to best help my child. One day he will spread his wings to fly and building the foundation now to give him the skills he needs down the road is the least I can do. Most importantly, Aiden will always be more than his diagnoses. Apert syndrome has never defined him, and ADHD will not either. No matter how frustrated I get every time I tell him to clean his room...

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[1] Peg Dawson, EdD, Richard Guare, PhD. “Smart but Scattered: The Revolutionary "Executive Skills" Approach to Helping Kids Reach Their Potential.” New York, NY: The Guildord Press, 2009.

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