So, I pondered a lot about writing this post–what to write, how to write it, when to write it, and if I should even write it at all. But on Friday, when The Boy was formally diagnosed with ADHD, and I shared that on my personal Facebook page, and I had so many people comment and ask questions and say supportive things, I just knew. I knew I had to write this post, and write it right now.
Let me give a little background about me, because otherwise, what I write isn’t going to make any sense and you’re gonna think “Wow, she’s really not processing this very well, I think she’s in denial.” Oh man, do I do denial well! Seriously, that’s how I survived the NICU. But in this case, I know exactly what an ADHD diagnosis means for The Boy. You see, I’ve been a disability rights advocate for a long time. In law school, I worked for a disability rights agency that represented people with all kinds of disabilities, including people in institutions (like mental hospitals, and institutions for people with developmental disabilities). I started a student group that focused on disability law. I know exactly how our systems work, or don’t work, for people with disabilities, including kids. Especially kids.
So, when The Boy started to struggle in school, and the word “distractible” came up about 100 times during his teacher conference this fall, and when she said how much he continued to struggle with reading and writing despite her best efforts, I knew what probably came next. I knew his teacher would probably do a referral for him to our school’s Student Intervention Team (SIT) to discuss his struggles. I knew we’d need to take him to his pediatrician for an ADHD evaluation, and that we might be looking at a learning disability too, which would require testing by the school psychologist. I knew that then we’d reconvene, this time as an IEP team, to make a decision about whether The Boy qualified for special education or any other services or classroom interventions. I could see it all unfolding.
I was a little sad, because nobody wants to hear their child is struggling, but I knew the process, and I knew that The Boy’s school is outstanding at this stuff (I’ve seen enough bad teams to know an outstanding one when I see one), and that in the end, outcomes for kids identified as young as The Boy are pretty darn good. It’s when a kid doesn’t get identified until they’re much older that the train tends to come off the tracks, or when they’re at a school that sees kids with disabilities as problems instead of as little people. Our school kicks butt, and we’d caught it early. I knew he’d be fine.
So, sure enough, when the SIT referral did happen a couple months later, I called the pediatrician’s office to set up the ADHD evaluation, and figured out what testing I hoped the school would do for learning disabilities. We brought donuts and coffee to the SIT meeting, because the first rule of parenting that NICU families learn is “Be good to the people taking care of your child,” and we sat down as a team to talk about The Boy. I watched the team work as beautifully as I hope every school team works (though I know they don’t)–they brainstormed ideas for interventions, they asked questions, they listened to each other, and then they easily came to consensus on a plan to figure out what The Boy’s needs are. Without me even having to ask, they proposed doing all the testing I would have asked for on the learning disability front, while we pursued the ADHD testing with our pediatrician. I left the meeting feeling elated.
I know that’s not normal. I know most parents, including The Hubs, leave a meeting where their child is referred for special education evaluation feeling guilty, frustrated, scared, overwhelmed…but not elated. I’m not your average parent, though. My perspective is definitely unique, especially for a parent at the beginning of this process. To me, a learning disability and ADHD are just not a huge deal. Do you want your kid to have them? Of course not. But they’re not life-ending disabilities–The Boy is not going die from this. I’ve literally watched him stop breathing and his heart rate dropping…so, I can’t get worked up over his brain working differently than other kids’ brains. And if you approach a condition like ADHD or a learning disability properly, as our school’s team is, they’re not even life-limiting.
Back to the process…so, to diagnose ADHD, the pediatrician’s office gave us and his teachers surveys to fill out about The Boy’s behavior. And then we met to discuss the results, which were not shocking. He scored extremely highly inattentive, and moderately hyperactive, and it’s much worse in an academic setting than at home, since we don’t expect him to sit still and focus at home the way he needs to at school. It took about two weeks from our initial consult to the diagnosis, which happened on Friday.
We’re putting him on meds now and seeing how it goes. I hope they’ll work and he won’t have side effects, and so far (a very short so far!), so good. I know some people have strong feelings about medications. I don’t. I think if I can give The Boy a pill that makes it possible for him to succeed at school AND doesn’t make him sick or a zombie, then fuck yeah, I’m giving him the pill. And if the pill makes him sick or a zombie or just doesn’t work? Then fuck no, I’m not giving it to him. I also think people who judge other parents for doing it differently are assholes, which is why I wouldn’t ever say someone is a bad parent for making a different choice than me. Consider this a warning for those of you thinking about being an asshole in the comments.
And now we wait to see how the meds work and what the results are for the learning disability evaluation, which we’ll meet as a team to discuss in about a month. The Hubs has dyslexia, and it tends to run in families, so it’s entirely possible he has both going on. I’m looking forward to having answers, because not having answers means the best we can do is a shot in the dark at what’s best for him. After we have answers, that awesome team at school can come up with a plan that makes sense.
I know there are a lot of you out there who are struggling with a diagnosis like ADHD or a learning disability or ASD or all sorts of other disabilities. When you had hopes and dreams for what your child would be like, and they don’t turn out to be the people you imagined they’d be, it can be hard to come to terms with that. It’s a loss, a loss of the future you imagined. It’s OK to grieve that loss. And while you’re grieving, I hope it helps you to know that you’re not alone, and that you don’t have to feel shame about your child’s condition.
Because, I feel very strongly that we shouldn’t treat disabilities as something to be ashamed of. They don’t make people less-than. They just make them different. Just like being black doesn’t make you less-than, or being gay doesn’t make you less-than. It just makes you YOU. I know the rest of the world doesn’t act that way…and that’s partly why I am writing this blog. I don’t feel sad about The Boy’s diagnosis, and I don’t want anyone else to either. Especially The Boy. I don’t want him to think there’s something wrong with him, because there isn’t. He is perfect just as he is.