“Now So Much Makes Sense”: One Mom on Her Son's ADHD Diagnosis

Hi, friends! When family life starts to feel like it's coming apart at the seams, parents naturally start asking themselves questions. That's what happened to one of our readers, whose son traveled a pretty long road before he got his ADHD diagnosis. Here's everything they went through.

Hon, your son was diagnosed with ADHD last week. As his mom, how did it feel to finally have the confirmation in black and white in front of you?

On the one hand, I was relieved, because I knew he could now get the support he needs at school. On the other hand, it brought up some worries and fears. Would we be able to support him as a family and give him what he needs to thrive? Does he have co-occurring conditions like autism or dyslexia, and can we protect him from others, like depression, anxiety disorders, and addiction?

I'm chronically ill myself with long COVID, so I worry that I won't be able to support him enough, or that I'll give him everything I have and my own health will get worse from the strain. But I'm trying not to let those worries take up too much room in my head. Right now I'm reading up thoroughly on ADHD. That helps a lot, because suddenly so much of my son's behavior makes more sense to me. It also gives me more ways to respond to him, and that's already making everyday life a little easier.

How old is your son, and what made you think about having him tested? 

He turns 7 in May. He's always been very wiggly, fidgety, and constantly on the move. But he could also sit quietly and listen to stories, and he could concentrate really well when he was building with Legos or doing puzzles. So for a long time we figured he couldn't have ADHD.

Back then I didn't know that with ADHD there's something called hyperfocus, which is exactly that kind of intense concentration. At daycare it became clear that his development wasn't age-appropriate in a few areas (speech, motor skills, social interaction), so we signed him up at our local developmental pediatrics clinic (the SPZ).

We wanted someone to look at his developmental delays in general and figure out the reasons behind them. But the wait at these centers is often a year to a year and a half. He's been in occupational therapy since he was 5. But at that point, nobody had pointed us toward ADHD.

Then something stood out in the daycare's preschool prep sessions…

In his last year of daycare, he had preschool prep sessions two mornings a week. It quickly became clear that he couldn't work on a worksheet by himself. He was always distracted. If someone sat next to him, though, it worked. Since he was doing well cognitively, the daycare teachers suggested applying for a one-on-one school aide instead of holding him back a year before starting school. The first application was denied because we didn't have a diagnosis that qualified him.

After that, we put him on the waiting list at every SPZ within driving distance. The first one still hasn't gotten back to us, two years later. Our son was behind in several areas of development, and he also had other issues (like severe farsightedness at -6.5 diopters, plus hearing problems) that might explain some of his difficulties. So at first we didn't want to have him tested for ADHD alone.

We wanted someone to look at the whole picture, so we wouldn't end up with a wrong diagnosis. That's why we only signed him up at the SPZs and didn't look for a child psychologist. But once he started school, the problems got much more obvious, very quickly. From day one, he had no desire to go to school and barely participated. He couldn't stay in his seat, didn't listen, and was constantly fiddling with things in his hands.

His teacher, thank goodness, was very understanding, and together we tried lots of different ways to support him. She clearly saw ADHD in him and asked us to apply for an aide again. But since we still didn't have an SPZ appointment or any further diagnosis, that application was denied too.

At daycare it hadn't all been so bad, but now our son was clearly suffering, and something had to change fast, before he ended up refusing to go to school at all. We were already having to coax him or fight with him every single morning to get him there. So we started calling child psychologists in our area, and we were lucky to find someone who works a lot with ADHD and didn't have a wait as long as the SPZs.

Do you feel like his brain has always worked a little differently from other kids' brains, or were there specific moments that stood out?

There were actually several moments where we had that feeling. We just never connected them with ADHD back then. He was a very fussy baby who cried a lot, and from birth he slept only 10 hours a day. He was extremely sensitive to stimulation.

In baby classes and in the postpartum recovery class I took with him, we always had to leave early because he'd start screaming. As soon as we were outside, he calmed down. As a baby he never went through a stranger-anxiety phase, and as a toddler he almost never did pretend play, with or without toys. Real play with figurines didn't start until he was 5. That could also point to autism, which still needs to be evaluated, but we haven't gotten that far in the process yet.

And then there were moments that impressed us, but we don't know whether they come from his brain not being neurotypical, or from his intelligence. Maybe it's a bit of both. At just one year old, before he could talk, he showed us with gestures that he recognized places and knew where we were driving. As soon as he could talk, he always told us which direction the places he knew were in. (That way is the hardware store, you turn here to get to my childcare provider's. Mom, if we're going to Grandma's, we have to turn here, and so on.)

When he was 4, I taught him the hours on a clock by moving the hand and telling him which hour it was. A few weeks later he saw a written number four somewhere and said to me, “Mom, that's a four!” At that point he didn't know any numerals, not from home and not from daycare. So I asked him, “How do you know that's a four?” “You showed me on the clock!” I had thought he'd only memorized where the hand pointed, but he had actually memorized the names of the numbers.

He also taught himself simple addition before he started school. And now when he's doing math and can't get the answer, he finds other routes to the result on his own (for example, if he doesn't know what 8+8 is, he does 7+7 first and then adds 2).

When he was learning to read, he memorized whole syllables from the very beginning, even though his class doesn't use a syllable-based method. He also has an enormous vocabulary for a kid his age and an unusual way of expressing himself. We hear all the time, “He talks like a grown-up.” And that's even though he had major trouble speaking until he was 3½.

So how did you go about getting the evaluation started? And how did you explain to your son what was coming up? 

It was important to us not to go to just any doctor or psychologist who “also” does ADHD evaluations, but to find someone who really knows the subject, so we wouldn't end up with a rushed or wrong diagnosis. I searched online and we found a good child psychologist near us. It took 2 months to get the first consultation, though, and another six months until the diagnostic appointment.

We haven't explained the term ADHD to our son yet. He's already noticed on his own that school is hard for him. So we told him the doctor would see how well he can concentrate and how smart he is (because an IQ test is part of it), and that the doctor wants to help him concentrate better. It also made things more interesting for him that the tests were done on a tablet. He felt comfortable at the practice and with the therapist, and he did the test as well as he could.

On the ADHD test on the tablet, according to the doctor, he was too quick pressing the buttons. Apparently he often said the right answer but pressed the wrong one. That made the test impossible to score. But according to the psychologist, that very impulsivity is a criterion and hallmark of ADHD, and based on the questionnaires and his own observations, he was still sure our son has ADHD.

After the diagnosis, I started reading more closely about ADHD. And every time a typical behavior of these kids is described, I recognize my child in it. So the diagnosis makes sense to me, even though the “official” test couldn't be scored.

Now we're facing the challenge of explaining to our son what's “going on” with him. We've held off because we wanted to get better informed ourselves first. Only if we're well informed can we answer his questions. I also came across an explainer video for kids. I think it'll be a good way to show him what ADHD is. What matters most to me is that he doesn't come away feeling sick or flawed. 

How will you go forward from here? Do you have an idea yet whether you'll try medication or not? What will your decision depend on? 

We have an appointment at an SPZ this summer. We're going to keep it, because if he does end up needing medication, that's the appointment we'd need, since a child psychologist can't prescribe it. They may also be able to repeat the test that couldn't be scored.

We're not automatically against medication. We want to hear what the doctors recommend and then see what we think makes sense for our child. What matters to us is that he doesn't suffer because of his ADHD, and right now he mostly does at school and with homework.

It might make sense for him to have medication support in the morning, but maybe not all day long. But we don't see it as a must. If he can get through class well in the future with a school aide, then in our view he doesn't necessarily need medication.

We'll also be submitting another application for a school aide, which this time, with the diagnosis, should actually be approved. Last semester our son already had a lovely staff member from the school's after-school program, who was assigned to his class for a few hours of support.

He got along well with her, she likes him, she does a great job, and she's agreed to take on the aide role if we get approval. We're so lucky to have found someone so quickly, and on top of that it's someone who already knows our son well, and the two of them understand and like each other.

Will you talk to his teachers about this new development?

In our case, it was actually his homeroom teacher who pushed us to get him tested for ADHD as soon as possible. The other teacher in his class already knows too, because she was at the official parent conferences. I should mention that before I got sick, I worked at this school as an elementary school teacher, so I know most of the teachers well and get along with them. That means most of them know my son, too. And once he gets a school aide, every teacher will know he's getting extra support anyway.

What worries me more is family and society. I don't know who we'll tell, because some people in our family already voiced prejudices when we told them what we suspected. There's a lot of ignorance and prejudice out there about this diagnosis, and some people think it's just a trendy diagnosis and/or bad parenting. Meanwhile, there's now scientific evidence that the brains of people with ADHD work differently from the brains of people without it.

What are you hoping for in the next steps?

We hope the school aide gets approved as soon as possible and that we'll get recommendations for other kinds of support for our son and be able to put them in place. Hopefully that means less frustration for him at school, and we'll handle everyday situations better. 

To finish, tell us a bit about what makes your son who he is, apart from his diagnosis… 

I wouldn't separate that from his diagnosis at all, because there are definitely some aspects of ADHD you can see in a positive light. Besides, I'm still too new to this topic to say which parts of his personality are shaped by ADHD and which aren't.

What we love about our son is that he's so open and friendly with everyone, loves to cuddle with us, and gets excited about things easily. He loves to talk, a lot, loves audio stories, and is a fan of Spider-Man and detective stories (The Three Investigators, TKKG, the Famous Five, and so on). He likes to swim and recently started jujitsu. He's a great kid.