My son has autism.
These are very hard words for me to write, let alone to say. Initially, we’d say Asperger’s. But now that it’s not even a thing anymore, we say ASD. Somehow the initials feel less grave. Less final. Less life-altering. But the truth is, everything is different now, and no new phrase or abbreviation is going to change that.
Life with Liam has not been easy. After recently turning down a great (non-freelance) job offer to stay home with him, concerned with his catastrophic and violent outbursts, difficulty adjusting at school, and day-to-day chaos in the family with the new baby, my husband and I found ourselves at our wits end. We really didn’t want to take him to a specialist. We didn’t want him to be labelled. I think we both feared for what we might find, that our son–who we’d always thought of as brilliant and tenacious and stubborn and clever–would be held up to scrutiny and found… different. Sure, every kid has their quirks. But any parent going through a situation similar to ours knows there’s a point where you break. Where you stop blaming yourself for being a bad parent and you get clarity, perspective, and everything stands still.
It became clear to me that Liam might be something altogether different when my husband and I started watching the television show Parenthood. In the show, for those unfamiliar, Adam and Kristina Braverman start out the first season with their son Max’s diagnosis of Asperger’s. After watching Max’s story unfold, and seeing his behavior acted out on television, I started to see a more clear picture of my own son. The tantrums, the obsessions, the violence, the black and white thinking, the anger and frustration over changes of plan, the patterns. Michael and I would get really quiet as we watched his scenes, and things started to come together.
And in some ways that’s expected. Nothing, so far, has gone according to plan with Liam. He spent the first ten days of his life in the PICU with sepsis. His temper is legend. He’s obsessed with cars and Minecraft and Keane. He “sees” music when I play it, and that’s distracting. Even the simplest excursions out of the house can turn into a catastrophe. This September the school had an open house, and we were all excited to see his classroom and learn what was in store. We even had a hand-written note from him, and he couldn’t stop talking about it. We all went along, even the baby, and everything was fine until Liam discovered the presentation wasn’t going to be in his classroom. Cue epic meltdown. It was so bad, and he was so inconsolable, we had to walk home and didn’t get to see any of it. I knew something was wrong, that we were missing part of the picture. But I still wasn’t sure what that was.
This is part of the problem. With other spectrum kids, I always imagined they were missing something, as if they were somehow incomplete (which is stupid and wrong of me, I admit). With Liam, I’ve been with him almost every day of his six years here on earth. When I look at him I see a complete person, with faults and flaws like everyone, but I never thought him to be diagnosable. Sure, he never liked to sing songs on his own. And he would get mad at me for singing his favorite songs because they didn’t sound perfect. And he talks constantly and has no internal monologue. And he’s had a hard time making friends. And he’s grown up for his age in many ways, prefaces sentences with, “Clearly…” and “as you can see…” but struggles with zippers and buttons and eye contact. But I just thought it was going to get easier. That it was a phase. That he was just a kid.
So we started putting the puzzle together after talking about it and doing research online, and finally made the dreaded appointment. The day before the big day, I met with the guidance counselor and vice principal at his school. Liam’s first year, kindergarten, was a challenge. He had some pretty colossal outbursts in school, which required that his teacher move his whole class outside to get him to cool down (and for their safety–yes, that was my kid throwing chairs and screaming from under the table). This year he started to express to me that he hated school and didn’t want to go. Every morning is a challenge to get him from bed to the school, which is only across the street.
The meeting with his teachers was important because I had almost no window into his daily activities. Whenever I’d ask him about his day, I’d get a very rehearsed, “Great!” which I follow up with “how many time-outs did you get?” to get the full picture; on bad days, the response was: “I don’t want to talk about it! I don’t want to talk about school ever!” I knew he was struggling in gym, and I was worried he was having a tough time in the classroom. According to his teachers and administrators, they were “managing” him. I had a problem with that word. I don’t like the idea that the school is “managing” my kid. I want him to excel, to feel part of school, to enjoy it and be thrilled to walk in those doors every morning. Maybe that’s a stretch, but I loved first grade, and the fact that he already expressed such hatred of school at that point was extremely worrisome.
I didn’t tell the teachers what I was thinking, that my son had autism. I couldn’t even wrap my head around it yet, and chalked it up to being a bit of a hypochondriac. But the next day, when we met with Liam’s new doctor, I realized very quickly that my fears weren’t unfounded.
Three hours. Lots of tests. Lots of questions. Follow-ups. I could hear myself answering all the questions in the check list. “I think he gets sarcasm… oh, wait… I mean, not really. If it’s a sarcastic phrase he’s familiar with he gets it, but not otherwise. He gets mad when we tease him.” “He has no internal monologue. He has no indoor voice.” “All he talks about is Minecraft and cars. It’s how he measures everyone. He makes friends through Minecraft, but cars are his personal therapy.” “He struggles with buttons and hates jeans. And he prefers to wear polyester gym pants. He calls them ‘slick pants’.” “He sleeps well, but he gets scared by things sometimes. Rushing thoughts.” “He worried about death at a very young age.”
Liam and my husband went out to do some more tests while the doctor looked over her notes. She had a pained look on her face, and struggled to share what she was thinking. She said that it’s not going to be a diagnosis with a first meeting, but he’s showing strongly the markers for high-functioning Asperger’s. She said it like, well, as if she were delivering news of cancer.
I thought I was prepared. That’s what I had suspected. I’d done the research. But a part of me was just expecting her to say, “Ah, he’s just a rambunctious boy.” But she didn’t. She said, “He tests very strongly into high-functioning autism, or Asperger’s.” (She followed up by basically telling me that there was a ton of work ahead, that moms, more often than not, are the heart of their children’s success, and indicated that there was a long road ahead for all of us.)
The knowledge, in many ways, has been a blessing. I know my husband, in particular, has found more patience to deal with him. Yes, Liam is still maddening at times, but we know his outbursts are not just because he’s being spoiled or stubborn (though he can be both sometimes). It gives us a sense of relief.
But what I haven’t been prepared for is the sense of mourning. Someone wrote on my Facebook wall that autism isn’t a death sentence. Yes, I get that. I haven’t lost my kid. With the news lately I couldn’t be more grateful for him every day. But the kid I thought he was going to be, the one I’d made up in my mind… that’s never going to be Liam. Yes, he’s going to be something else, and wonderful and perfect in his unusual way. (My husband overheard him last week lecturing his teacher about Saabs, for instance. Always the informative car geek, my son.)
But since his diagnosis last month, I’ve been walking around in a bit of a fog. I don’t know what I would do without the GeekMom community support, because this is really, really hard (not just the diagnosis–it’s compounded by a baby in the house and my husband’s recent layoff). Knowing your child has autism means you’re going to have to fight for them every day. It means that nothing is going to be easy. Not tying shoes. Not picking out dinner. Not getting out the door. It’s hearing the same stories a thousand times. It’s being perpetually late. It’s picking your battles. It’s learning to love beyond the boundaries you ever imagined, and opening yourself up. And it’s learning to change your expectations radically. As Liam’s autism specialist wrote me last week, “sometimes you have to redefine success.” And that counts for us, too. I’m going to have to redefine my own success as a parent, and will be redefining it again and again for years to come.
We did have one breakthrough recently. As Michael and I are pretty tireless geeks, we’d been waiting for the right time to read The Hobbit. My expectations were very low. There are no cars and no trains in The Hobbit. Up until this point all attempts to make dragons appealing had failed. But with our persistence, working every night to read together and talk about the story, he’s fallen in love with it. Yes, he wants the Lord of the Rings Lego set, and he’s certain to put his own spin on it. For an average parent/kid combo, this might not be groundbreaking. But for Liam it was amazing. He’s been learning to think beyond the borders of his comfort zones, and even such a small step feels like a huge triumph. Like Bilbo, Liam has taught us that it’s about each step you take, and the successive ones after, that make up your journey. Sometimes you just have to take a different path.