Today’s post is the second in a series inspired by Doug Conant (my leadership hero), who every year makes a point to write a letter to each of his children. He uses this annual practice to capture what is going on with each child, who they are at this age, and to reiterate how much he loves them. Today’s post will focus on my son, Zachary Arthur, as he turns six and is a rising 1st grader.
The primary audience for this post is my son years from now, when he can look back with more maturity and realize we were doing the best we could to do right by him. It’s a letter my husband and I have been thinking about writing for over a year now.
The secondary audience, of course, is you as the reader. In being vulnerable and transparent about our own journey raising Zachary, my hope is that it encourages those facing their own struggles, particularly those super parents blessed with special kids.
My sweet Zachy Zoo,
To fully appreciate your growth and successes this last year as a kindergartner, I need to tell you a little bit about what we’ve been through as a family in the years leading up to this point. Circa 5:00 am on the day after Christmas, 2017, I sat at the computer in the lobby of the AmericInn in my tiny hometown of Grafton, ND under a taxidermy Bison head completing an application to have your evaluated for speech therapy. You were three and a half and while your vocabulary was quite advanced, your speech articulation seemed to be increasingly delayed. In many ways, the complex, sophisticated ideas you were trying to communicate made it more pronounced; not being fully understood was very frustrating to you.
Having required speech therapy myself as a kindergartner, I wanted to have you assessed by the school district. If you qualified, it was a free service. I thought it would be easier for you to gain ground as a preschooler rather than wait, given the academic rigor of modern-day kindergarten. Little did I know where this path would lead us.
Six months, 100+ pages of forms, and a gamut of in-person cognitive, behavioral, PT/OT, and speech assessments later, we received a concerning packet of information that revealed that while you were cognitively very advanced, you likely qualified for much more than speech therapy.
I received advice from other mothers who had gone through the process, warning that due to tight school budgets, parents needed to heavily advocate for their children to receive services. The next step was going before the Committee of Preschool Special Education (CPSE). As I sat in an empty hallway on a folding chair waiting to be called in, tears welled up in my eyes as a quote by Elizabeth Stone ran through my head.
“Making the decision to have a child -it’s momentous. It is to decide forever to have your heart go walking around outside your body.”
– Elizabeth Stone
What happened next was surprising, having read your file the women conducting the meeting painted a portrait of you that was uncanny, given they hadn’t met you before! When I remarked on how well the Committee had captured your strengths and the inherent challenges, the response was simple “We’ve seen a lot of ‘Zacharies’ over the years.”
I walked back into the hallway after the meeting, processing that we had not only received approval for the services we were seeking, but services we didn’t even know were an option. This time tears poured down my face, trying to process the outcome being a good thing, yet wishing you didn’t need all those interventions.
A few weeks later you failed the hearing test at a routine Pediatrician check-up – another piece of the puzzle. The next 18-months contained countless doctors’ appointments searching for answers.
You being our only boy and so young, we had no clue what normal looked like, whatever that means. Sure, we looked around at other families and wondered why their kids seemed to sit and listen when you (and Natalie) didn’t, but you never know if a given snippet is representative of the whole picture. You were kids!
You kept getting in trouble at preschool for impulsively running ahead of the line leader, knocking down other kid’s towers, and secretly taking preferred toys home in your backpack. Knowing you weren’t “a bad kid,” I wondered if perhaps there was more going on that might explain these behaviors, but the overwhelming message I was internalizing was my failure as a disciplinarian and a mother.
You were internalizing the barrage of negative feedback as well. It was heartbreaking to hear you tell me on multiple occasions during bedtime prayers that “you wouldn’t go to heaven” because you “weren’t good.” I’ve been adamantly working to undo that message in your heart ever since.
Two rounds of audiology testing and three ENT visits later, we got your ears cleared of the bi-lateral blockages, caused by impacted earwax of all things! We also sought out the NYU Child Study Center for a behavioral evaluation, and ultimately pursued intensive weekly Parent-Child Interaction Therapy (PCIT) where Dad and I brought you into Manhattan and learned best-practices to most effectively shape down disruptive behaviors and shape up positive ones.
Incredibly blessed with ready access to World-class experts and amazing insurance benefits given my employment at NYU Langone Health, those factors were not barriers as I know they are for many. Concurrently, I wondered how I might possibly juggle my job and what felt like a second full-time job of getting everything lined up for you. In reading posts by parents of other kiddos with special needs, I know I am far from alone in these insecurities. I was grateful for a supportive boss and the flexibility I needed to do both – and do both well.
Your clinical psychologist, Dr. Yamalis Diaz, went slow in making any formal diagnoses, waiting until you were six months past having your hearing restored to see how the situation might improve. With age, an increased ability to hear, and the weekly behavioral modification sessions, you made tremendous progress.
The scarier diagnoses on the table fell away and you presented as a clear cut case of ADHD – combined type, which Dr. Diaz fondly describes as “a snooze-fest.” Falling in love with your charm and curiosity, Dr. Diaz dubbed you “her little nugget.” You, in turn, adore her, extending the ultimate seal of approval at your last visit – an invitation to your birthday party.
We learned a tremendous amount about this hereditary condition (as inheritable as height!) from our sessions with Dr. Diaz. ADHD is not only a collection of behavioral tendencies, but characterized by neuro-structural differences in the brain’s underlying formation. While still poorly understood in the general population, advancements in neuro-imaging and sixty years of longitudinal research have produced well-documented causes, symptoms, and medical treatments.
We learned that the ADHD brain has up to four times more processing capacity than a non-ADHD brain, and that there are many positives associated with its characteristic hyper-focus on preferred tasks/subjects when harnessed and nurtured. ADHD tends to cluster in high-performing individuals. Still, there are also many ways the associated behaviors can derail success when not addressed.
The knowledge we gained of the condition de-stigmatized this “super brain” that you were born with and gave us a clear charge as your parents on how to support you. Dr. Diaz described it as a superpower you would need to learn how to harness and control, much like Spider Man needing to learn how to utilize his webs, lest he get tripped up in them.
While you were showing improvements at home, parent-teacher conferences revealed that those preschool early interventions were not being as effective as we all hoped, given the impact ADHD was having on your ability to focus and attend to instruction.
Nearly every adult who interacts with you for an extended period of time comments on how bright and clearly intelligent you are, still your mastery of the fundamentals was lagging as was your ability to take direction in the classroom. Ahead of kindergarten, we wanted to optimize your readiness to learn to put you on the best footing ahead of Elementary School.
As parents, we were deliberate in making the decision to try medication. What convinced us was the overwhelming evidence supporting positive longitudinal outcomes for individuals with ADHD when the best-practice combination of 1) school-based accommodations, 2) parental behavioral modification techniques in the home, and 3) finding the right medication and dosing are used together.
When this combination is implemented in early childhood and continued through early adulthood, it supports optimal neuro-development of the prefrontal cortex, which is responsible for decision-making and executive functioning. Keeping the underlying structural advantages, interventions significantly decrease the negative implications of commonly underdeveloped areas of the ADHD brain.
It was powerful to hear stories of adults with ADHD who described going on medication as life-changing, wishing they had done so sooner. Your dad and I thought long and hard about what YOU would ultimately have wanted us to do for you. We hope that you will understand the decision as one made in love and in wanting to give you the best footing for your future. And boy, have we seen a difference since taking this step!
A common misunderstanding of medication is that it changes or flattens personality. Dr. Diaz helped us understand, when optimized ADHD medication enhances personality, allowing an individual to more fully embrace the person he was created to be. This couldn’t be more true for you, Zachary, and we sure do love that person.
You are one of the most loving, charming, and thoughtful individuals I’ve ever met. A natural helper, you look for opportunities to jump in and lighten one’s load. More than once, when I’ve driven up with a car-full of groceries, you come out and help me unload the car, insisting on carrying in the heaviest bags. Earlier this spring, your dad and I were planting in the garden. Turning off your favorite show on TV, you came outside and helped us open bags of mulch and spread it. We commented that we’d pay you for the help you provided. Your quick retort was that you didn’t want money, you just wanted to be with us and do your part in the family.
You are playful, witty, and charming, quick to share a laugh. When you get interested in something you are all in. Your most recent obsession is Beyblades, a line of spinning battle tops first released in Japan. You’ll talk for hours about the various characters, unique powers of each Bey, and battle anyone willing to accept your challenge.
Our babysitter, Gabi, has endless patience and bought you a Beyblade stadium as a reward for positive behavior. She earned the status of a “top boss” in your Bey Club, and is your first major crush. You have threatened to pop her tires to prevent her from heading off to college next month (I literally had a wrestle a thumbtack out of your hands) and you gave her a Paw Patrol Walkie Talkie to stay in touch.
You are a protector, always looking out for the safety of others. I was sick this past week. In your concern, you not only brought me medicine, but fetched me a cup of cold water, lent me your baby blanket and stuffed animal “lambie,” and checked in on me multiple times.
Your kindergarten teacher shared with us that each morning you offered to help her “watch the kids” if she needed to step out to take care of things. And there is no six-year-old that takes wearing a mask and protective gloves more seriously during COVID-19 to stay safe from “the virus.”
Remote learning brought with it the need for me to step into the role as being your teacher. You are an imaginative, curious learner, but it is night and day clear what subjects and tasks are preferred vs. non-preferred.
We are both early risers, and as such, Kindergarten commenced at 5am and ran until about 7:30am when I needed to hop on my first work call of the day, a COVID-19 Executive Leadership Team daily check-in. What a crazy Spring semester it was!
Once your teacher got daily Zoom sessions going, you stood up for yourself and perhaps every little boy who has loathed forcing singing in elementary school, slamming your Chromebook shut without hesitation whenever your teacher launched into the “Good Morning Song.” We’d wait about 5 minutes and log back in to join for the remainder of the lesson.
That behavioral training has been immeasurably valuable to me in building point structures and an associated prize box full of Bey Blades and Transformers to help motivate you to complete the necessary worksheets. Each night we watch your favorite YouTube channel, Aumsum Time, before bed learning curiosities of science or researching favorite animal superpowers. Your ability to retain and regurgitate facts is truly incredible.
Zachary, you are a complex and amazing person. You are so much more than a diagnosis. While better understanding ADHD helps your dad and I provide you with the structure you need and perhaps to have more patience for those difficult associated tendencies (e.g., waking up to water pouring through our kitchen ceiling light fixture because you accidentally forgot to turn off the sink faucet in the bathroom above), ADHD does not define you.
You have grown and matured so much. You enjoyed Kindergarten this past year and made some wonderful friendships. A deep introvert, you have also relished all the family time at home. Your future is bright. I cannot wait to see how you’ll utilize your talents and pursue your interests in the years to come.
You are incredibly loved and such a good boy. You tell me daily that “you love me more than anyone in the whole entire world.” You like to pretend that we are married, and you’ve repeatedly proposed. My heart melts with the tenderness that you ask, “Will you marry me?” and then pucker up to give me a kiss. Some lucky someone someday will have a terrific life partner. Raising you requires more patience than I knew I had in me and is probably the hardest thing your dad and I have ever done together. Still we cannot imagine a better son.
I love you, my prince. Mommy
