Part of the reason I put this blog on hiatus was that Nikola is getting older and I wasn’t sure how much of his life I wanted to make public, especially as he wasn’t able to really give consent. But there’s some stuff going on that I do want to share.
Nikola is 8 now, and he’s in 3rd grade. He’s in the gifted program at the same school he’s been in since pre-k. He loves the school. I love the school. It’s everything that’s right about Chicago Public Schools, other than the funding issues that all Chicago Public Schools have… namely that they lose funding every year.
He also has some of the same behavioral issues he’s had since he was a toddler, namely: screaming meltdown or very loud furious outbursts when he’s frustrated or prevented from doing what he wants to; taking things incredibly personally, as personal attacks, if you, say, forget something or (in the case of people who don’t know him) pronounce his name wrong; lashing out physically; trouble transitioning from one thing to another; trouble dealing with change; some other stuff I don’t remember right now. He also doesn’t like to look at peoples’ faces when talking to them; his ideal hug is one where his back is toward the hugger; he forgets to say hello when encountering someone or goody bye when he’s leaving; he’s extremely literal; he spends much of his time at home completely unable to sit still and sometimes will literally run laps around the room; he becomes very obsessed with one or two things… for years the ONLY things he was interested in was trains and dinosaurs. that’s all. that’s all he talked about or played with; he has difficulty reading emotions like anger and frustration and responds poorly or not at all; more that I can’t remember.
I got a referral from his pediatrician to have him evaluated for ADHD. This involved a trip to the neurologist, who was a little confused as to why she was our first visit and that he hadn’t seen a behavioral therapist first.
You might wonder what’s involved in taking a kid to a neurologist to get screened for ADHD and/or ASD. I was, and there’s very little that I found online that covers it – most info seems screened at ADULTS even though ADHD & ASD are more commonly diagnosed in childhood.
We were both asked a bunch of questions, mostly related to health history. Any blows to the head? Any family history of mental health issues? Any seizure disorder? etc. The neurologist tested his reflexes and had him move his arms and legs around and walk and move his eyes around and follow instructions and basically tested his muscle tone and strength and if he was weaker/stronger on one side than the other and if he could do what he was told and perform certain physical things. He managed to, even if he was clumsy at some of them.
She said she couldn’t diagnose him with ADHD or ASD, but he has markers for both… which doesn’t mean much. She also used words like “high functioning” which… as far as I know are really frowned upon by people on the spectrum. Like, hugely frowned upon. They aren’t used much any more. She also said people on the spectrum are often non-verbal and don’t recognize or respond to emotions which isn’t the case for a lot of people I know on the spectrum. Her knowledge of/attitude toward ASD seemed really out of date. She also said his behavioral issues might just be emotionally immaturity and he’d catch up.
She said her office was sending a referral for a behavioral therapist who can both screen for the issues we’re worried about and also say if he needs therapy for his behavioral stuff. We’re also going to be getting a packet with a bunch of questionnaires for Nesko, me, and two of Niko’s teachers to fill out regarding his behavior as part of screening for ADHD. We’ve yet to hear back from the behavioral therapist, but I know for a fact that department is incredibly busy all the time because they take ALL insurance including state insurance which most medical providers no longer take because the state is over a year behind in paying most claims. If I don’t hear back from them by the end of next week I’m going to start calling every day to see if there’s a cancellation we cram ourselves into. That’s how I was able to get a CBT appointment two months before my first scheduled one. Once you’re in the system it’s a lot easier to get follow up appointments. It’s irritating and a little onerous but I’m glad people with very few options are getting care.
I’m not worried about Nikola having ADHD or being on the spectrum because they’re bad: I want him to be able to get whatever support he needs from us, from his school, from therapists. And if he has an issue, then the sooner he’s diagnosed the sooner we can get that support into place.
I might be blogging this particular medical journey, mostly because it might be helpful to other parents navigating the same waters. I also might wind up taking down or password protecting these specific posts because it might be confidential information… ADHD and ASD are both heavily stigmatized. While I’m comfortable about talking publicly about being bipolar, I can’t make that decision for him.