Next Tuesday, Kirk and I are speaking to a psychology class at a local university. A friend of ours is the professor, and we’ve spoken to a couple of her classes in the past. It’s a good way for the students to get a different perspective, and we’ll always take an opportunity to talk about Nolan.
We usually start these talks by going back to the beginning. We talk about Nolan as a baby and a toddler. And of course we talk about how we came to know that something was not typical about our kiddo.
The biggest clue for us was a developmental regression. It happened a bit after his second birthday, and it didn’t make itself obvious all at once. Strange as it seems, the change is a lot clearer today than it was at the time.
Before I take you back to that period of time, you may be asking yourself, “Is this a thinly-veiled excuse for me to share pictures and videos of Nolan as a tiny adorable boy?” Maybe… Okay, yes. I’m a mom; that’s what we do.
So when Nolan was about a year and a half old, he was in love with letters and numbers. Through the lens of Autism, I might now say that he was fixated. But then, he just really loved them. I distinctly remember being in the grocery store with tiny Nolan in the seat of the cart when he got very excited and started saying, “Sebben! Sebben! SEBBEN!!!” in this tiny high-pitched voice. When I turned to see what he was looking at, he was staring at the sign hanging above my head. Sure enough, we were in aisle 7.
As far as I was concerned, he was a genius. Don’t believe me? Here’s my proof.
But sometime in the months after he turned two, Nolan hit a rough patch. He stopped sleeping well, and his whole demeanor changed. We attributed a lot of that to his lack of sleep. But eventually, we noticed that he didn’t even seem to care about letters or numbers anymore.
I’d started having a little voice in the back of my head asking if I should be worried. Then I had a bigger voice in my face asking if we should be worried about his change in sleep (it was Kirk). When someone close to us finally asked me if I was concerned that he might be autistic, I knew I couldn’t ignore my little voice anymore. Somewhere in the depths of my subconscious I’d been worried about it since months earlier when I’d read a story about a local family who had a child with severe autism.
So I asked Kirk to schedule an appointment to see the pediatrician so that we could ask about sleep. I knew there were other questions I wanted to ask, but I knew that would get us there without letting Kirk know that I was concerned about bigger things.
I believe I mentioned to Kirk with a forced casual tone that I also wanted to ask about the fact that Nolan flapped his hands. Kirk had been a hand flapper as a child, and his mom had recounted how adorable it was. I knew it wasn’t a problem in and of itself, but I also knew that it could be an indicator of Autism. But I don’t think Kirk thought anything of it.
So I asked the pediatrician, “At what point would we need to be concerned that Nolan flaps?” The pediatrician immediately moved in to poo-poo me. “Well, I get asked about Autism all the time, and it’s rarely an issue …”
That was probably the first time Kirk had ever heard that word in connection with our son. It caught him off guard. And yes, I’m a horrible person for that. But Kirk is a worrier extraordinaire, and the last thing I wanted to do was make him worry if we didn’t need to. Did I handle it well? No. I did what I thought needed to be done.
So anyway, our pediatrician at the time pulled out the developmental checklist that typically gets used with two-year-olds. I honestly think he went through the questions thinking we were being paranoid and that this would just shut us up. I remembered he’d gone through the same questions briefly at his two-year checkup, but in retrospect I think that was more out of “check it off the list” than to actually evaluate anything.
The only questions I specifically remember were “Does he clap his hands?” and “Does he respond to his name?”. At the checkup four months before, I told the doctor that he didn’t clap his hands, but occasionally he would clap his feet. The doctor told us, “Close enough.” And did he respond to his name? No, but we usually called him Buddy, Champ, Meatball, Monkey Man, Dude or any other number of things. “Okay then. We won’t worry about that.” Now? These answers were terrifying.
In the doctor’s defense, this was 12 years ago when Autism Spectrum Disorder was just starting to come into the spotlight for its huge increase in diagnoses. Parents were coming to him with concerns about behaviors that were totally typical, and people were starting to freak out. Now, the developmental checklists are much more in-depth, referrals for diagnosis are moving more quickly, and even therapy program waitlists are much shorter.
So we left the clinic with a plan to see if we could get Nolan’s sleep back on track and come back in a couple of weeks to see if that had an effect on anything on that developmental checklist. He sent us off with a “sleep hygiene” plan, a book recommendation and information on “Ferberizing” Nolan (better known as the “cry it out” method) to establish a sleep routine.
Spoiler alert: This had nothing to do with sleep. Secondary spoiler alert: None of these things worked for Nolan. We were told repeatedly by professionals that these were the things we needed to be doing to get our child to sleep, and that Nolan’s sleep trouble was behavioral and not medical. We believed that (thinking we were terrible parents who couldn’t even give our child what he needed to meet his own basic needs) for almost two years. That’s probably a different rant for a different time, though.
So we moved on toward diagnosis and eventually gained a better understanding of just how our favorite kiddo sees and interacts with the world around him. We’ve had a diagnosis for almost 12 years, and things have gotten easier along the way. Part of that has to do with the fact that the resources are starting to catch up with the needs of the Autism community, and part of that is just that this has become normal to us.
If you’d told me then that Nolan’s sleep would never be “normal”, that he still wouldn’t be communicating verbally or that I’d still carry pull-ups in my purse today, I probably would have passed out. But I also might not have expected so many of the amazing things I’ve shared with him.
When he was diagnosed, the team of professionals who diagnosed Nolan shared Emily Kingsley’s “Welcome to Holland.” If you haven’t read it, you really should. It basically talks about how having a child with a disability may not be the journey you expected, but if you spend your time only lamenting the journey you didn’t get you’ll miss out on the beautiful parts of the journey you’re on instead.
If there’s one thing I hope we can impress upon the students in next week’s class, it’s that while our journey may be different than that of most families it doesn’t make it any less important or beautiful than theirs. Our goal isn’t to solicit sympathy for our situation, but merely to highlight our experience.
Autism or not, Nolan is the same kid he’s always been.