Mourning the Loss of the Child I Didn't Have - and Loving the One I Do
Sometimes you get lucky, and you can introduce your kids to a couple of your hobbies so that you can pick them back up. For example, my son loves watching movies with me and every now and again I can talk him into a craft night. In fact, just tonight we painted little ceramic Halloween figures. I like to encourage his artistic/creative side, but I also just like to paint, so it's really the best of both worlds.
One hobby that I cannot really share with him right now though, is writing. He's got a really great mind, and a fantastic vocabulary. He's also wonderful speller. I know he'd be able to sit down and write great things if it was something that interested him. Unfortunately, I think he'd just get bored after a sentence and find a Roblox to play. Before you come at me about allowing my 8-year-old on Roblox, I had my husband lock it all the way down and he's not allowed any friends he doesn't know in real life, and we regularly check and will remove anyone who isn't. He also cannot play without being in our eye site so we can keep an eye on him. Hey, I witnessed gang activity in Southern California when I was his age, I think he'll be fine.
Anyway, one thing leads to another, and I find myself never making the time to write. And all of a sudden 5 years have gone by. My last blog was about my sweet little 2-year-old who still woke up in the middle of the night and needed me to get him back to sleep. Five years later, I still put him to bed each night, but thankfully, he no longer needs me in the middle of the night. Reading about those early days made me reflect: What would I give to have known then what I know now? I wonder if parents ever stop looking back and thinking, "If only I had known."
If only I knew then that my sweet little two-year-old boy was going to have 5 of the hardest years ahead of him. If only I knew then that I was going to have 5 of the hardest years ahead of me!
What would I do differently? Would I do anything differently? Would it even matter if I had known sooner? What could I have done better the second time around?
You see, my son was the best baby. Sweetest, happiest, cutest, little pumpkin of a baby. Easy to care for and easy to love. Everyone loved him and said he could have been a baby model, he was so perfect. And I couldn't get enough time with him. I worked only to go home to him at night. He was my world.
Although he was a bit slow to hit his milestones, I wasn't worried. I knew from my child development classes in college that it's perfectly normal for kids to develop on their own schedule. While other, younger children were already walking or putting sentences together, he wasn't truly behind—he was just taking his time. Most importantly, his doctor wasn't concerned, so neither was I.
He found his voice at three years old and then never stopped talking. Around the time he turned four, I started noticing he was different as certain behaviors became more recognizable. I realized some of it stemmed from his environment; he had gone from a small, quiet in-home setting where the daycare worker handpicked the children, to a large daycare center full of kids from all ages and walks of life.
This new environment was a lot for an only child from a quiet home to navigate. Suddenly, he was surrounded by children from diverse backgrounds, with different demeanors and, I now realize, various undiagnosed conditions. He began to act out, saying and doing every naughty thing imaginable. It wasn't long before he befriended the other most challenging kids in his class—who I now suspect were his undiagnosed peers—and together, they became both the best of friends and the teacher's biggest problem.
Every morning at drop-off, his dad had to handle full-on meltdowns. It got so bad that the teacher had to create a distraction just so his dad could leave for work. The challenges continued at the end of the day. When I came for pickup, I was almost always met with a bad report—another story about something he had said or done. Each time, I had to find a way to explain his behavior and promise we would address it at home.
That was only the beginning.
I started to suspect he had ADHD, so I called to get him tested. The wait list was a year long. What the hell was I going to do in the meantime? I knew if he had ADHD, there was no other option than medication. I know me, I know my husband, and I know our capabilities within the home. Having learned about mental disorders in college, I've always been pro-medicated therapy. I know that the brain can be wired in a way that doesn't let you function in society the way society says you should. Is it right to have to medicate yourself to function in a society not created for you? That's a blog for another day.
We spent years having bad reports and meetings with teachers over his behavior and their concerns with it. It got to the point where I was so frustrated with the school and how they were handling things that I tried to open enroll him into another school. That didn't work by the way. My guess is they don't want to transfer the "troubled" kids with "records."
So, we got him into therapy which didn't really do anything, in my opinion, but I was able to tell the teachers "we have him in therapy!" He has been in and out of it for years as we have tried to find therapists on our healthcare plan available after normal business hours. I'm convinced the therapy was more helpful for me than it was for him. Each session, I'd take the first 30 minutes to explain all his recent behaviors so we could work on strategies. But I was the one telling the therapist about new techniques I found in books or online half the time. What was I even paying them for?
During the wait for testing, I continued my research and learned a questionnaire could sometimes be used in lieu of a formal evaluation. His doctor agreed to do it, so after she received the completed forms from me, his dad, and his teachers, she diagnosed him with likely ADHD. She started him on a non-stimulant (not comfortable prescribing a full-on stimulant), but it backfired completely, making his behavior worse and causing him to become intensely angry and mean.
After a year of therapy, a failed experiment at non-stimulant medication, and many more behavior reports, we finally got the call he was able to be scheduled for testing. I took the day off work and drove 45 minutes to the nearest site with hope in my heart that we'd finally have answers and be able to move forward with an actual treatment plan.
Sure enough, he was diagnosed with ADHD and Level 1 Autism. The doctor explained that based on my answers to her questionnaire (yes, another one), she had already suspected as much. Reading her assessment of him was overwhelming. All the things she wrote were things I already knew, but finally, an expert was confirming my feelings. My intuition was validated, and it was a profound relief to have answers and know that my son wasn't just "being naughty."
For a couple of years, I had shared my suspicion that he might have ADHD with friends and family. Though I'm sure they meant well, their responses were often dismissive comments like, "Oh, he's just a boy." But my intuition, supported by extensive research into the symptoms, told me a different story. I've always trusted my understanding of my own son, and it was clear to me that his challenges were more than just typical childhood energy.
Once we had an "official diagnosis", my next move was to go immediately to the school district and request an evaluation. It was clear that he was going to need it documented so that teachers could have a better understanding of his behavior and we could put a plan in place that would make everyone's lives easier based on what works well for neurodivergent children.
As I sat in a room with two special ed teachers, a school counselor, a psychologist, and his first-grade teacher, my heart sank listening to their evaluation. They explained that despite his behavioral challenges, he didn't qualify for an IEP or a 504 plan. The reasoning was frustratingly simple: he's too smart. Because he isn't struggling academically on their tests, the school concluded that he doesn't need formal assistance. Instead, they felt it was best for him to simply participate in the behavior plan they created. I suppose it's working—he hasn't been suspended yet this year. Then again, it's only early October.
If you know me, you might be shocked to know that my son has been suspended from school several times each year since the day he was in kindergarten. Let me tell you that nothing prepared me to get phone calls from the counselor and principal telling me my son's behavior was not acceptable and I now have to leave work to pick him up as he's not allowed to finish out the school day. This ongoing struggle often has me thinking about my school years and the striking difference between my record and my son's.
My mom cleaned out a closet and gave me some old report cards today. I had one from the 4th grade, which is just one year older than my son is now. Mrs. Steuben from Citrus Elementary School wrote, in the finest cursive, that:
"Alicia is a very capable student both in reading and writing. Her stories are creative. Alicia is a very responsible student. She has demonstrated an aptitude for language and art skills. She has demonstrated artistic ability."
And the coup de resistance? She writes, "Alicia demonstrates a genuine interest in school and all her assignments are done to the best of her ability. Alicia is very consistent and hardworking, always on top of things. Alicia is capable and responsible. She is a pleasure to have in class. Alicia is a very cooperative and responsible student. She had the desire to learn!"
I mean, if she's still alive, I'd love to thank her and ask if she'd be willing to write my next annual work review!
That should tell you all you need to know about who I was in school. So you can imagine my surprise when that capable, responsible 4th grader grew up to be the mom to this kid. The mom whose 3-year-old gets in trouble for saying "motherfucker" at daycare. The mom who was warned her son's behavior was so disruptive he might get kicked off the bus and jeopardize the daycare's partnership with the city.
Growing up, I always imagined I would have a daughter, but in truth, I hoped I wouldn't. I know how difficult the world is for women, and that's a struggle I would never wish on anyone. My own painful experiences with self-esteem as an early-maturing, curvy girl in the 90s convinced me I wasn't equipped to parent a daughter. It's a daily challenge just to love myself as I am; the thought of teaching another young woman to love herself while also preparing her to battle the misogyny and patriarchy in our country felt like a task I simply couldn't face.
I was so happy when I found out I was having a boy. As someone who was single until I was 34, I had always dreamed of being surrounded by men who loved me in my old age, so having both a husband and a son was a dream come true. For a while, it was perfect; he was my sweet baby boy and my funny little toddler. Then, everything seemed to change at once. The world turned to shit when the COVID pandemic hit, and right in the middle of it all, my son’s difficult behaviors began to emerge. It was then that I started to lose the dream of the child I thought I would have.
When you have a kid, you always play the "What will they be like?" guessing game. Which traits of mine will he get? Which traits of his dad's will he get? Will he be smart like me? Will he be good looking like his dad? Will he like music? Will he enjoy watching baseball? Will he want to draw and paint? Will he be good at sports? Will he be popular in high school?
And you only ever think about the best of both of you. You never really imagine that your child is going to get some of the not-so-great parts too.
Overdramatic? Me? Never.
Long story short, I got straight O's (for Outstanding) in every category on my report card, except in "Controls talking." No surprise there. So I fully expected that my child would be another perfect student. I really did. Given how incredibly smart he was and how quickly he learned new things, I felt certain he would do well in school. What I didn't realize at the time was that his own mind would be the very thing working against him every single day. Because that, I now know, is what ADHD is: a brilliant mind at war with itself.
The "Level 1 autism" diagnosis is just the icing on the cake. It means that on top of being hyperactive, impulsive, and easily overstimulated from ADHD, he also faces another set of challenges. He has difficulty understanding the nuances of social situations and needs a strict daily routine to feel secure. Everyday sounds, lights, textures, smells, and tastes can easily overwhelm him, making a difficult situation worse. On top of all that, he will struggle with executive function and regulating his emotions.
Maybe I should find Mrs. Steubens and see if she can put a positive spin on my son's traits the way she did for me back in 1992.
In my mind I'm thinking, "But that's not fair! I was a fucking angel child for my teachers and my parents. I did everything right. I made the good choices. I followed all the rules." I did everything they said I needed to do to succeed, and my years of report cards reflect that. Year after year, I earned A after A. The high praises followed too. In 6th grade my teacher, Mr. Utley wrote, "Alicia is a bright and creative student that will take on any challenge that confronts her. She seems to have self-motivation and determination to succeed in all she does. Way to go Alicia."
Yes, way to go Alicia. Shit girl, you were every teacher's dream!
So why did I end up with the opposite in my child? I did everything right. I did everything they told me to. I was a good kid and I made the smart choices. I picked a good husband and father. I gave my child a good stable home. He's got everything he would ever need and far more than he'll ever use. He has the quintessential happy home with a set of successful married parents, a dog, two cats, and a backyard with a fence. Why, if I provided him this perfect life, did he not become the perfect child?
The ADHD parent groups on Facebook are filled with so many desperate people. We're all just out here trying to survive the meltdowns--the screaming, kicking, hitting, and worse things that you never thought a child could do or say until you see it firsthand. We run to online forums to ask "WHAT DO YOU DO WHEN..." because we're on our last fucking straw. We've tried everything, nothing works, and we're about to go out for carton of milk and never return, just leave it all behind.
In these online groups, it's not uncommon to see parents ask, "What's the point of it all?" We feel cheated out of a "normal" parenting experience, forced instead to go to battle with our kids every single day--often several times a day. We are exhausted from it. The guilt we feel after losing our cool and letting our kids see it, or worse, feel it, is too much. Parenting a child with special needs is an incredibly hard, yet hidden struggle. Friends and family don't talk about it enough, and in the support groups, most of the pleas for help are even posted anonymously.
We all dreamed about our children before they were born, dreamed of them growing up, dreamed of the life we would have and what kind of parent we wanted to be. And once the signs started showing that our kids were "different" we lost those dreams. It might hit you all at once, or just slowly over time, but you realize that your dreams are unattainable. You will never have that kind of life. You will never have that kind of child.
It's the sanctimonious posts in parenting groups that get me these days—the ones that say, "Just have another one, you'll figure it out!" I feel compelled to respond because there's a crucial distinction they miss: you may not regret the child, but you can certainly regret the circumstances. No one plans for a child with special needs. When that becomes your reality, all your original plans are thrown out the window and you're forced to make a hard pivot. There's no time to grieve the child you thought you'd have; you're too busy fighting for the one you do.
You ask yourself what you ever did to deserve this only about a million times. And even though not everyone believes in karma, a lot of us will look back and try to find any possible explanation for what we did that got us here. Is it genetic? Is it the environment? Did I do something while pregnant?
It was a really hard realization to come to that I will probably never get a report card that talks about my son the way my teachers talked about me. Every child deserves someone to speak highly of them and praise them for who they are. I know not all children act in a way that deserves praise, but often I think adults forget they are--in fact--just kids. Kids who are told they are great often grow up to be.
The author of The Explosive Child talks about how kids are just trying their best--that we should assume positive intent and remember they want to be good kids. We have to believe we didn't spawn devils who were put here to cause havoc. All behaviors are communication from the child. Because their brains are wired differently, we need to learn their communication and then basically translate it for them into something more acceptable to the world. We need to find the root cause of the behavior and do what we can to mitigate it.
For me, it was a diagnosis, and medication. That's what works for us. I don't doubt that people can regulate without medication and have their own paths. I'm not here to argue about what works or doesn't because every child and family is different. I can't pretend to know everyone's specific diagnosis and dynamic. I just know that our lives changed the day we finally found a psychologist to prescribe a stimulant. Teachers who knew him before medication always make comments to me about how much his behavior has changed. Some of that is growing up and maturing, but most of that is Focalin.
Things aren't perfect. He's not perfect. He's certainly not like me. Teachers aren't writing me a page full of glowing remarks on his behavior. He doesn't like to sing or dance. In fact, he hates my music and complains about my singing. He has a mid-amount of fun playing sports. Not much of a shopper unless he's getting a toy.
But at the same time, he is like me. He's super smart--even if his teacher never comments about how capable and determined he is to learn. He enjoys painting, even though he tires of it much sooner than I do. He loves his stuffed animals and blankets. He enjoys decorating for the holidays though he doesn't help much, he likes to watch me. He loves marshmallows and bananas, and I know that comes from me because his dad hates both!
He loves with his whole heart, unconditionally. He enjoys being around friends and telling jokes to make people laugh. He's always trying to be the center of attention. He feels very deeply and can get his feelings hurt very easily. When he gets upset, it's hard to get him out of it.
He's definitely an extrovert (or extroverted introvert). He loves going to the movies and will sit and watch his favorites over and over. He is now learning he actually does like music--just not mine. I worked hard to help him discover music, because his dad and I both love it — there was no way he wasn’t going to grow up in a house filled with it. But more than anything, I wanted him to find his own sound.
I didn’t get the child I always pictured in my head and accepting that was hard. But I got the child who challenges me every day—to show up, to grow, and to never coast through motherhood on autopilot. When I hear other moms say, “Just keep having babies, you’ll figure it out,” I can’t help but think they probably don’t have a kid like mine. We only have one, and honestly, I’m grateful for that every single day.
Regardless of any diagnosis, we were always only going to have one. I decided that when I was pregnant with him. I hated being pregnant—I was too old, too uncomfortable, and it completely wrecked my body for years. Sure, there were a few sweet moments, like feeling him kick, but honestly, they didn’t make up for the rest of it. I’m genuinely happy focusing all my love and energy on one child. If we had another, I know they wouldn’t get the attention they deserved. My son is a lot—in every possible way.
I've read a lot of books on parenting children with ADHD, and the chapter on siblings is always a tough one. I can’t even imagine raising more than one child with the diagnosis, as some families do. (Lord Jesus, just take me now.) I don't know how I would manage multiple children, let alone multiple neurodivergent ones. Honestly, any parent who successfully raises them into well-adjusted adults has earned a level of sainthood I can't even comprehend.
Being his mom has been the hardest job of my life. And I'm an Director in HR who oversees 11 staff hiring 1200 people per year. Coming home to manage my household is harder than what I get paid to do for work.
Our bedtime routine perfectly captures this exhausting, beautiful challenge. It still consists of stories and backrubs. It's been years, and I sometimes fear we've created a monster who will need this forever. But I know it won't always be this way. One day he'll just tell us good night, close his door, and we won't see him until morning. That idea blows my mind, just like every milestone he's hit as he's grown.
Tonight was a perfect example of why I cherish these moments. While I was typing this, he opened his door and said, "Mom, you have to come in here and see this," and then played a funny sound from his phone he wanted to share with me. It wasn't a big song and dance, just a simple connection. After that, I put on his sleep stories, turned off his lights, and rubbed his back like we do every night. In moments like that, I know I am doing something right.
In my last blog, he was just 2 years old, still needing his mommy to rock him back to sleep. Since then, he’s grown so much—it’s been incredible to watch him develop. Seeing how far we’ve come has been the wildest ride of my life, and I’m amazed at how well I’m learning to navigate it all. It has been the hardest damn thing I've ever done, but also the most important. We're raising a person who will be out in the world with other people. A WHOLE person. We can't fuck this up. We can't send out a psychopath who wears people skin.
I've spent this entire blog describing a difficult journey. As I wrote in my last post, it started with me holding my 2-year-old boy, filled with hopes and dreams for his future. This post tells the next chapter: the years of struggle that followed and the fading of those original dreams for his childhood. Even so, I know he's going to grow up to be a great person. His childhood will be tough. Our whole family will struggle, and some of the hardest parts have just begun.
But I also know this: "Always makes a real effort" Alicia is not going to fail.
I've always told a self-deprecating story about my career, chalking it up to a series of lucky breaks that somehow landed me in a director role. But looking at my old report cards recently, I was reminded that my success wasn't an accident. Teacher after teacher, from fourth grade on, commented on my effort. The truth is, I worked hard. My real "luck" wasn't in finding the right jobs; it was having a brain that fit neatly into the school system, allowing that hard work to pay off. That combination of effort and conformity is what got me here, not a random walk through the right doors.
My son may not have been given the same "luck" I had—a brain that fits neatly into the world society has built—but he has me, and I will be his advantage. Through every struggle, every negative report card, and every time his behavior upsets the people around him, I will be his fiercest advocate and his constant defender. I will not let the world underestimate him, disparage him, or define him by its assumptions. His path will undoubtedly be harder, but for as long as I live, he will never walk it alone.
Ever since my child’s diagnosis, I’ve treated learning about the disorder like my post-grad work — studying how to parent a child with ADHD in the best way possible. I share what I learn with my husband, explaining new discipline strategies. I pass along tips to his teacher to help him focus in class, and I give guidance to his daycare providers on effective discipline techniques.
We need to be talking about this stuff and sharing our struggles. We need to know we're not alone, and we need to work together to help these children grow into successful adults. What's one piece of your own story that you've been afraid to share?
I'm committed to educating anyone who will listen—sharing my experiences, the strategies that have worked for us, and the insights I've gained from books, podcasts, and research. And I'm committed to giving my son all my love and support, unconditionally. I know that love will be the foundation he uses to build his own successful life.
Having a child might not allow you to be the parent you always thought you would be, but it allows you to be the parent you were always meant to be.
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