I’m grateful that education and awareness are slowly growing, illuminating the cultural implications of neurodiversity in contexts that include ADD, ADHD, autism and more. While some people are affected in more subtle ways than others, it’s fair to say we still have a ways to go to reach a level of awareness that is optimal, however, for the time being, there are things like chemistry (medication) and behavior modification therapies (ABA), somewhat tested by time, methods that have relatively large, if vague, bodies of knowledge surrounding them and that are somewhat familiar to the average bear.
While the knowledge base of these are indeed quite large, conversely, when we are first thrown into this unknown “river”, so to speak, learning to swim in it, the current of weighing the right fit of these for a child or loved one, can be quite startling due to a lack of specificity about them. It isn’t easy to find stories that resonate or that are honest about the pros and cons.
In addition, related diagnoses often ring out vaguely without providing any real insight into expectations for the future of a child and their relationship to medication and other treatments. This ambiguity can often leave the uninitiated grappling with questions, with how to know we are doing the right thing on behalf of ourselves and/or those we love who are faced with these kinds of challenges.
Suddenly, Everything Has Changed
That’s how it felt to me, at least, accompanied by a certain kind of worry and sadness when it was first suggested that my child begin taking meds at the ripe old age of 5 to help them with an impulsive nature, which I fondly refer to as “curiosity disease” or “enthusiasm disorder”.
Truth is, I am biased because I relate to him all too well. As a child, I was exactly the same: my curiosity often reached disruptive levels in classrooms, especially. I was consistently described as “bright” but that opinion was usually quickly qualified with: “but we don’t know what to do with him.”
I struggled but made it through a time when there was far less education and awareness of neurodiversity than there is now. It is my sincere hope that my child’s is a smoother journey met with far less adversity.
Even as there is more awareness and more choices now, they remain decisions to be made. I continue to struggle with these decisions as any parent would, even as we may be resolved to give the suggested programs a try and commit ourselves to being open to it, receptive to the guidance of practitioners through what is to come.
Truth is, it’s hardly an easy thing when others who know so little about your child take so much latitude in making decisions that affect them in such large ways. Trust is important in these cases. My humble opinion is to give it a chance but don’t be afraid to stand up for what you believe in. Speak from the heart. As a parent, I don’t want to ever regret not speaking up.
Likewise, if I put myself in a practitioner’s shoes, I can imagine there is no other way to go about it than to sound convincing and assertive sometimes to a point of muscling us into agreeing with them. There is a lot at stake, including reputations.
When you have kids there are a lot of people who want to chime in on how you should raise them. Everyone has an opinion, even people without kids, on everything from how much screen time kids should have, what they should eat, how much sleep they should get and more. When your child has special needs, the number of people who have and share their opinions is even greater.
I try not to be afraid to ask questions and challenge those with strong opinions in ways I feel are beneficial to my child. I don’t make a habit of challenging anyone’s opinion but at the same time I don’t make a habit of accepting them willy nilly, either.
As a parent pushing off the dock in my boat, out into that unfamiliar “river”, which is the world of medicating a child for the first time and at a young age, the current of it, the stories the doctors and other practitioners have to tell about success or failure with children on meds, all sound a lot like market-speak. Rather than sounding authentic, they sound too good to be true.
I needed something authentic, something not crafted to set me at ease. I had to find some way to gather insight into knowing if these suggestions made sense for my child or not. Kids are way too snowflakey for any one-size-fits-all kind of medication, treatment, story or approach.
Which brings me to my point: When it was first suggested my child be medicated, I wanted to be sure that it was the right choice. I wanted due diligence because it is so hard to find something authentic and reassuring. There is very little out there on the topic that isn’t slanted in some way. As a parent, I wanted to read real stories from real people about a real struggle. The stakes are indeed as high as they get.
It can feel quite lonely and daunting.
So, finding a lack of other stories I could relate to, I set out on behalf of my own child to figure out a way to do this, at least for the short-term. I share this now with you, dear reader, in hopes it may provide you a small comfort and help you make your own decision with a sense of hope and confidence.
The Power of Analogy
A little backstory is required here: Back in 1998 I was living and working in Seattle. I was employed by a private school on Mercer Island to design and build both on and offline curricula for high-functioning kids on the spectrum, primarily between the ages of 5-9.
There is no way I could have known then that everything I was learning from those kids I served and the teams I served on would translate into real value nearly 20 years later when I became a parent to my own, neurodivergent child.
A wise mentor of mine there once taught me:
If you’re trying to teach fish how to swim, it helps if you put them in the water.
One of the most important things I learned from that experience is this: Find the right “water” for each kid and you’ll begin to help them unlock their own potential.
So, prior to my own child’s embarking on this odyssey of being medicated I considered finding the right “water” to begin with. Since they love art, especially painting, it is no coincidence that I had about a dozen framed canvasses on hand for them to paint before, during and after the introduction of these meds.
For simplicity, we will call this first example “#1.”
They were not on medication of any kind at this time. In fact, several of these paintings at first looked almost identical to this. Obviously, these were painted quickly and without much thought or organization.
During “#2” they had been on a non-stimulant, slow-release daily med for about two weeks. Non-stimulant meds are recommended for young children over stimulant-based ones for presumably being more predictable and also a shorter and less extreme list of possible side effects.
*Full disclosure, they asked for help making the “rays from the Sun” in paintings 2-4. Otherwise, each painting was realized and completed as independently as possible.
“#3” is during the first week, with the presence of the non-stimulant, slow-release daily med but now in combination with a stimulant-based med (only a small dose in the morning that wore off by lunchtime).
“#4” is the second week on both meds.
In this context at least, it seems thoughts and expressions are becoming more organized.
Behaviorally, in this short span of a few weeks, I think it’s fair to say I’d seen improvement in organization in general, such as playing more turn-based games and more successfully. I noticed better persistence in tasks, especially non-preferred tasks that are often a challenge when they are transitioning away from preferred ones.
I observed that physical movements of the body were slower and more controlled, too. I observed less deflective behavior when challenged with new tasks that they may not be confident in or may not be the most familiar.
They seemed just as engaged with our other kids as ever, but even more, perhaps, and definitely in more appropriate ways and without losing unique traits. My little one is still very much who they are: curious, energetic, enthusiastic, engaging, imaginative and fun. Yes, and wild and crazy sometimes, just the way I love them and just the sort of whimsical spirit I’d expect from a healthy, spirited 5-year-old.
While this preliminary news is good, even better is that they have shown little sign of side effects like decreased appetite, sleeplessness, irritability or otherwise degraded signs of being as they are. That could change. I’ve personally seen it change in some of the children I worked with all those years ago. I can only trust in our approach. (update: October, 2017 – it does change and dosages will likely be recommended to be increased by practitioners in order to maintain effectiveness).
It is a process. Practitioners also will say things like, “ADD/ADHD is a chemical imbalance, so meds will always be required to help them overcome it.” Therefore, it is important not to think of medication as a cure but rather as a tool to help manage these challenges. In other words, once a child starts down this path, there is likely no going back.
Fortunately, to that point, and in addition to medication approaches, there are also other factors that can be in play and that can have a positive impact. One of these is applied behavior analysis, which is important for having added support to help kids build the infrastructure they need to begin learning to manage their attention challenges.
It’s also easy to forget this is a growing, evolving human. Daily kids (whether affected by attention issues or not) are learning and picking up on new cues and getting dozens upon dozens of questions answered that all lead toward greater emotional, intellectual and social understanding. Kids are neurological superhighways of growth all day, every day.
It takes some refined observation to delineate between the benefits provided by the medications, the behavior therapy and the natural outcomes of their own development. Through their own social interactions with others and as they evolve in each their own social-emotional understanding of the world and those around them, they are also learning to navigate on their own, in addition to these other complex and moving pieces. Can we ever know with certainty which of these are most effective? Maybe not.
The short-term benefit seems clear. For the long term, however, there is no certainty. Meds or not, there is only one sure-fire strategy for our kids, regardless of their struggles. As my Mom used to say: “Just love ’em.”
What advice is more solid than “just love ’em”? Pay attention to the things they love and help guide them deeper in, towards finding their own identities. Help them on their way. And just love ’em.
As a parent, my responsibility is as an advocate, honest and mindful of what I’ve observed and learned and sharing that on behalf of my child. As a team it is important to be transparent with both thoughts and feelings, while expecting the same from others. It requires work to be on these kinds of teams and takes intention. Learning to disagree and be productive with that is important but rarely easy. The best teams, however, work best when they can operate that way, producing the very best outcomes. When a child’s well-being is at stake, it should be imperative that the team doesn’t just agree willy nilly.
More than anything, I’m grateful for my sweet child’s incredible motivation to be creative and for consistently sharing gifts of inspiration and innovation. There are no words to transmit my gratitude for the opportunity to be just one of the many who love, support and play a positive role in such a wonderful young life.
Thanks for reading. I hope these thoughts offer some value and/or reassurance to you or someone you love who may be struggling with some of the same challenges. You are certainly not alone. Good luck.