10 Years After the ADHD Diagnosis: Lessons, Insights and Gratitude

December 3, 2018

It’s hard for me to wrap my head around the fact that it’s been 10 years since my son was diagnosed with ADHD — partly because I can’t believe he’s 16 (or that I’m old enough to have a 16-year-old), and partly because the early months felt like quicksand. Those first four or five years were a darkness we couldn’t seem to climb out of, if I’m being truly honest. Our days were long, intense near-repeats of each day before. Sure, the diagnosis offered reasons for behavior, but it offered no clarity on how to truly help my boy. That I had to figure out largely on my own.

But figure it out, I did. I’ve spent the last 3,650 days learning about ADHD, learning how my boy’s brain works, and learning how to help him become the man he wants to be. I’m a much different person ten years later, and so is my boy.

The Early Years

When my son was diagnosed with ADHD, he was barely six years old. He was in first grade, and much of the nightmare of kindergarten had followed us to a new school. I could no longer blame the school or the teacher for my boy’s struggles (although I will steadfastly maintain that they made it a whole lot worse, until the day I die). We quickly realized that his challenges were internal when he was in a new (much better) school environment and had a truly awesome teacher, and the same issues persisted. He still couldn’t sit still. He still had no awareness of personal space. No regard for risk and danger. No internal regulator. This kid still couldn’t succeed at school with all the right things in place. We were in the pediatrician’s office the day after that revelation, and at the developmental pediatrician’s office two months later.

I was worried. I didn’t want anything to be “wrong with” my sweet boy. What mama does? But, I had done some reading and concluded that he must have a learning disability. ADHD didn’t fit (ha!) and autism was years away from being on our radar.

Of course, it was ADHD. It was the one thing I was most uneducated on and the least prepared for. I dove in, head first, like any loving, fix-it-minded mama would. Head first… into a brick wall. You see, my mind was focused on “fixing” it. My heart was focused on “fixing” it. My mind was closed to any other outcomes. For years, I kept obsessing about ADHD, on a quest to erase all my son’s struggles. And, for years, I kept ramming my head into that brick wall.

You see, ADHD can’t be fixed, and there’s nothing that needs to be fixed, anyway. My boy is a wonderful human being, who simply doesn’t fit easily in a neurotypical world. But, I’m getting ahead of myself. That realization didn’t come for years. Years, ya’ll.

In keeping with that effort to “fix” it, we jumped onto the ADHD medication roller coaster. It was a much, much bumpier, whiplash-inducing ride for this kid. Medicine would work astonishingly well for 60 days, then stop working altogether. We tried one stimulant after another and constant dose changes. We simply couldn’t sustain the near-magic outcomes, no matter which medicine. It was three or four years of trial and error before we found a med combo that helped some sustainably. Of course, that didn’t last long-term either.

The Middle Years

About this time, I read The Explosive Child, by Ross Greene, PhD. “Kids do well if they can,” I read. “Behavior is communication, a symptom of something deeper.” My world was rocked. The understanding we gained, alone, completely changed our family. Implementing his approach to behavior changed everything. It changed my mindset, my understanding, my parenting… and my child. The yelling in our home became the exception, not the rule. We had more room for fulfillment and joy. Huzzah!

Now, don’t get my wrong, life with my boy was still full of really, really hard times. Understanding him better and addressing behavior better didn’t change his brain and it didn’t change the hearts and minds of all the other people in his life.

School avoidance and refusal began in the spring of fourth grade (his second fourth grade year). It was a weekly battle for years, and one that gave me PTSD. It all started one morning when dropping my boy off at school. I pulled up to the curb, stopped the car, told him “I love you — have a great day,” and he jumped out and closed the door, just like it happened every other day before. As I drove away from the curb that particular day, the cars behind me following suit, I heard a blood-curdling scream. I looked up in my rear-view mirror to see my own child screaming and crying as he ran in front of the moving cars to chase my car down. I probably don’t need to explain how horrifying that was. Thankfully, the car line was just rolling and everyone was able to quickly react to a child darting through the line.

I pulled over and rolled down my window to see what was going on. I assumed he left his lunchbox in the car or something. It was so much bigger than that. He couldn’t even tell me what was wrong. Said he didn’t know but couldn’t go into school. We sat in the car in the parking lot for over an hour that morning. I finally agreed to take him home for a while and come back and sign in later. He agreed, but it didn’t play out that way. In fact, we came back, it took 45 minutes to get out of the car, and when the school doors opened he fought like hell to not cross the threshold inside, and he never did. He ended up having a meltdown right there on the sidewalk, and I took him back home.

We’ve battled this, refusing to leave the house, administration trying to physically carry him into the school, and even my boy trying to open the door and get out of the moving car in a busy intersection as we turned toward school (age 10 by then). His school avoidance has been the toughest piece. And I still, more than five years later, watch him go into the school building after he gets out of my car, my heart pounding and my body tingling.

Social struggles were the second biggest struggle of the middle years since diagnosis. In sixth grade, my sweet, friendly boy was coming home from school every day yelling, slamming and throwing things, and saying that his friends were bullies and he should call the police. I knew they weren’t bullying him — he was carpooling home with some kids in our neighborhood and I knew the parents driving wouldn’t let that happen, or would at least say something. You see, preteen and teen boys tease each other to build camaraderie. I know, it’s twisted, but it’s reality. And my kid couldn’t see it. His super literal brain took every word at face value, his heart got broken, and then he raged at the injustice of it. And he’d be stuck there for hours.

This was when I began to suspect autism. At age 12, these social instances would have improved, instead of deteriorating further, if it were simply ADHD. I couldn’t explain his wicked “stuckness” on so many seemingly trivial things, nor his growing emotional intensity by ADHD alone, either. He certainly didn’t have the stereotypical autism symptoms — looking away, having one-sided conversations, or long-term obsessions — so it took three clinicians and two autism evaluations before someone was able to put their assumptions aside and do a thorough evaluation. In her report, the psychologist wrote, “He’s a clear example of autism hiding in plain sight.”

That diagnosis is still dismissed by people who don’t spend much time with my boy, or don’t understand the autism spectrum, but it was illuminating for our family, and finally completed the puzzle that felt incomplete for the six years prior.

The Past Year

The last twelve months have been remarkable. Remarkable! I feel like I’m seeing my child again. He’s coming out of his shell, finding his way in the world, and is truly happy. When he was diagnosed with ADHD ten years ago, he was a very sad little guy. He was always in tears, never feeling like he could meet expectations. Never understanding why he couldn’t meet expectations.

The transformation this year started with the realization that his ADHD stimulant medication was making things a lot worse. It was keeping him stuck and perseverating. It had him feeling like he was constantly under siege, teetering on the edge every moment. He was super anxious, sensory sensitivities were at an all time high, and he couldn’t stand anything going on around him, only feeling ok when he was alone and it was quiet (which is impossible in a high school with about 2,000 students).

It got so bad that he began texting me constantly to come get him and then hiding in the school bathroom when I wouldn’t pick him up early. In January, I requested that he start doing half days in person at school and half days of school at home, through virtual online public school. School administrators agreed and we’ve been doing that ever since.

While that has addressed his challenges with the environment, a great deal, he was still perseverating intensely to the point of making really bad decisions to alleviate the discomfort of obsessive perseveration. Then I had a revelation. If perseveration is an intense focus on one thing, and stimulant medication increases focus, the medication could be making the perseveration much worse. In June, once he completed his freshman year, we decided to try life without ADHD medication.

I’ve been a huge advocate of ADHD medication for a decade. I know it can improve lives. I was terrified to try life without ADHD treatment, frankly, but I knew we had to test this hypothesis. And so we did. And my boy hasn’t taken ADHD medication since. Not once. While he does struggle with a racing brain and distractibility some (much less than when he was first diagnosed), he’s a much happier kid. Now, instead of getting stuck, he processes and moves on. Weekly intensities have waned to a few in a year. He goes to school willingly, even though he hates it. He shows love and appreciation and offers to help others regularly. This was his personality all along, mind you, but the medication was intensifying the edginess and perseveration to the point that he couldn’t be that boy.

Am I anti-ADHD medication now? No way! It’s a truly helpful tool for so many kids and adults alike. I simply have an awareness now that it can cause more problems than it alleviates for some people.

Now that my boy’s personality can shine through again, now that he can enjoy life again, space was freed up to find his talents and passions and pursue them. He’s joyful and we all have true hope and optimism for his future. Will it look like his peers’ futures? No. Will it be without struggle? No. (He has C’s, D’s, and F’s in school. despite a very gifted IQ, for one thing.) But, his future will be bright and fulfilling and happy. I can clearly see that now.

The Lessons Learned

A decade of obsessing about ADHD (and learning differences and autism) has taught me so many things. Here are my top five:

  1. The greatest lesson is that there’s nothing to “fix.”And that’s assuming ADHD/LD/ASD can be “fixed,” which it can’t. Our kids have more challenges than most, but they are wonderfully unique and have their own place in this world. Yes, they need our help to adjust to being atypical in a neurotypical world, but that’s totally doable.
  2. This is part of getting your mind right for parenting atypical kids. I recognized that my parental mindset is the wheel that guides the direction of the ship — my mindset has the most power in my parenthood. When you have a victim mindset, you feel that everything has happened to you and you can’t change it. It holds you in a negative space, stuck. But, when you have a survivor mindset, you know things can and will get better and you fight to move forward. Positivity and negativity are both contagious — which do you want to teach your kids? Plus, the positive mindset helps you manage stress and cope with your more challenging parenthood.
  3. Another crucial lesson has been the recognition that my child doesn’t need to change — I, the parent, am the one who needs to change. In American culture, we’re taught that traditional crime and punishment parenting is the only way to be a “good” parent. We’re taught that kids who deviate must have “bad” parents. We’re taught that good grades lead to a good college, and a college degree leads to life success. We’re taught that American success is defined one way and that any deviation will preclude any success. This simply isn’t true. As parents of kids with ADHD, we must change the narrative for our kids. When can redefine parenthood and we can redefine success for our kids. We must.
  4. Calm, empathy, and validation are our most powerful parenting tools. Our kids have a lot of challenges and big emotions. Understanding how my child’s brain works helps to provide reasons for these challenges and is extremely illuminating. When the emotional center of the brain — the amygdala — gets fired up and intense, it cuts off access to the frontal lobe, including logical thought and reasoning. This is often called an amygdala hijack. When a child is having a meltdown or is in the throes of an intense outburst, there’s nothing a parent can say to make it stop, because the thinking part of the brain is inaccessible — the child can’t process information at that time. The only thing you can do is provide a safe space, stay calm, and ask your child how you can help. Providing a feeling of love and security during those times is the most effective.
  5. My final lesson is that we are stronger together. Raising challenging kids can be very isolating. You often feel like you’re failing as a parent and failing your child. You’re left to learn everything about this parenthood the hard way, the painful way. Yet, together, we know we’re not alone, we learn from each other, and support each other. Alone, we may chip away a few bricks, but, together, we can tear the entire wall down.

Notice that I didn’t talk about specific symptoms of ADHD and/or autism. While that knowledge has been helpful, of course, it’s not what’s most helpful to us and to our children. Focusing on the bigger picture is how you raise happy, successful, fulfilled adults, who just happen to have ADHD and/or autism.