I’m grateful that education and awareness are slowly growing, illuminating the cultural implications of neurodiversity in contexts that include ADD, ADHD, autism, hyperlexia, 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 inclusive of all people.
Being new to the world of so-called “special needs,” being thrown into this unknown “river”, so to speak, learning to swim in it, to navigate the current, how to weigh the right fit for various types of treatment for a child or loved one can be quite startling, mostly due to a lack of specificity about them.
It isn’t easy to find straightforward stories that resonate or that are honest about the pros and cons, especially as most prescribers get kickbacks from pharmaceutical companies based on their numbers. Don’t expect doctors to be forthcoming about any of that, either. Do your own research.
Vetting medications, services, and practitioners should not be taken lightly in a climate where too many practitioners are one-trick ponies and don’t often have open minds about finding the right fit. They are flawed humans, too, and too easily fall into the rigamarole of treating every patient more or less the same, which can make uncovering the right diagnosis and subsequent treatments no small task.
In addition, related diagnoses are often vague, too, without providing any real insight into expectations for the future of a child, for example, 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 may or may not require what one imperfect human suggests.
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.
It’s hardly an easy thing when practitioners who spend mere moments with your loved one 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 try and keep an open mind but don’t be afraid to stand up for what you believe in. Speak from the heart. Don’t regret speaking up.
Likewise, if I put myself in a practitioner’s shoes, I can imagine from another point-of-view they might feel like they have to sound convincing and assertive no matter what even sometimes to a point of muscling patients into agreement. There’s a lot at stake. Reputations build entire practices.
Besides, aren’t most parents mostly scared, clueless? They just want someone to tell them what to do, right? The decision is too much for them. The doctor takes the pressure off at least short-term by sending them on their way with some pills. The pills can be more for the parents than the child. Careful.
Also, to each their own.
When we have children, there are a lot of people who want to chime in on how to raise them. Everyone has an opinion, even people without kids, on everything from how much screen time they should have, what they should eat, how much sleep they should get, and so much more. When a child has special needs, the number of people who have and share their opinions is even greater.
I’m not afraid to ask questions and challenge strong opinions in ways I feel are beneficial to my child. While I don’t make a habit of challenging anyone’s opinion, I also don’t make a habit of accepting them willy nilly without due diligence. If your practitioner pushes back on you vs. validating and engaging in civilized discourse about a prescribed treatment, run the other way if you can. These decisions are big and shouldn’t be taken lightly.
As a parent pushing off the dock in my boat, out into the unfamiliar “river” of these diagnoses and things, which for me is the world of medicating a child for the first time and at a young age, the current of it was startling, to put it mildly. The stories licensed physicians and other practitioners choose to tell about success or failure all sound too good to be true. They resonate like market-speak rather than authentic experience. That makes the experience harder rather than easier.
I’m wired in a similar way to my child, neurologically, and I can relate in ways others cannot. I wasn’t medicated or exposed to therapies as a child. I had to find some way to gather insight into knowing if these suggestions made sense for my child or not. Kids are each unique, not well-suited for a one-size-fits-all kind of medication, treatment, story, or approach.
But it’s hard to find something authentic and reassuring. There’s little out there on the topic that isn’t slanted, many blogs are corporate-sponsored by Big Pharma and it’s not easy to tell. As a parent, I wanted to read real stories from real people about a real struggle. The stakes are as high as they get, which is why this kind of experience can be a lonely one.
I set myself to figure out a way to determine if there is indeed any value, at least short-term. I share my experience here with anyone who might be reading this in hopes it may provide you a small comfort and help you make your own decision with a sense of peace that you’re far from alone.
The Power of Analogy
A little backstory is required here. In the mid-late 90’s I was employed by a private school on Mercer Island, WA to design and build both on and offline curricula for high-functioning kids on the spectrum, primarily between the ages of 5-9. There’s 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 there used to like to say:
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: The first and most important step in finding the right “water” for each kid is about acceptance. Accept the things each child is naturally drawn to. Encourage this thing or things. Work with it. Help them bend it to their will and get even better at it, whatever it is. Their interests and natural tendencies are avenues towards helping them find their own identity, strengths, and potential.d
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’s no coincidence that I had a dozen framed canvasses on hand for them to paint before, during, and after the introduction of these meds.
For simplicity, we’ll call the first one “#1.”
They weren’t on meds of any kind yet. In fact, several of these paintings at first looked almost identical to this, painted quickly and without much thought or organization.
During “#2” they’d been on a non-stimulant, slow-release daily med for about two weeks. Non-stimulant meds are recommenddd for young kids over stimulant-based ones for presumably being more predictable. They also have shorter and less extreme lists of possible side effects.
*Full disclosure, they asked for help making the “rays from the Sun” in paintings 2, 3, and 4. Otherwise, each painting was realized and completed on their own. That they asked for help was also a positive improvement, though, as that wasn’t typical.
“#3” was done 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” was completed during the second week on both meds.
It seems thoughts and expressions are becoming more organized.
Behaviorally, in the span of a few weeks, I’d seen improvement in organization in general, such as playing turn-based games more successfully. I noticed better persistence in tasks, especially non-preferred tasks that are often a challenge.
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 ones they were less familiar with.
They seemed just as engaged with our other kids but even more, perhaps, and definitely in more appropriate ways.
Here’s arguably the best part: they did so without losing their 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’ve shown little or no 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).
Keep in mind it’s a process. Practitioners will say things like, “ADD/ADHD is a chemical imbalance, so meds will always be required to help them overcome it.” Therefore, think of medication less as a cure but rather as a tool to help manage these challenges. So, in other words, once a child starts down this path, it’s possible there’s no going back.
In my particular situation, in addition to the medication approach, there has been additional support to help build the behavioral infrastructure needed to begin learning to manage their attention challenges. There are mixed opinions about additional supports like Applied Behavioral Therapy (ABA). I’m not going to state that I’m for or against ABA. Such a choice is very personal and has as much to do with the personalities and presence of practitioners involved as it does overall philosophy. There are many kinds of ABA and a seemingly infinite number of providers. In my case, it has been a grossly positive experience but I’ve heard and read about an equal number of others whose experiences were far from positive.
These choices are personal and should be approached as such. There is no one-size-fits-all solution or approach. I’m merely reporting one experience. As I’ve stated already, vetting appropriate services and providers should not be taken lightly. Practitioners are not all equal.
It’s also easy to forget this is a growing, evolving human. Kids are evolving daily, 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, whether they are affected by attention issues or not. Kids are neurological superhighways of growth all day, every day.
It takes some refined observation to delineate between the benefits provided by medication, 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’re also learning to navigate the world on their own. Can we ever know with certainty which of these are most effective? Maybe not.
The short-term benefit seems clear, at least in my story. There’s no certainty, long-term, meds or not. There’s only one sure-fire strategy, regardless of the struggle. Mom used to say: “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.
As a parent, my role is advocate: honest, mindful, and available to share in constructive ways what I’ve observed and learned and sharing that on behalf of my child. That means often setting aside what’s most comfortable or makes the most sense to me and putting forward what makes the most sense for my child. They are not always the same thing.
As a team it’s important to be transparent with thoughts and feelings, while expecting the same from others. It requires work and intention. Learning to disagree in productive ways is important but rarely easy. The best teams work best when they can operate that way to produce good outcomes. When a child’s well-being is at stake, it should be imperative that the team doesn’t just agree because it’s easy. There’s too much at stake.
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 their life.
Thanks for reading. I hope these thoughts offer some peace to you or someone you love who may be making their way down this particular river. You’re certainly not alone. Good luck.