Wednesday night was a doozy for us. As happens so often with Liam, one thing didn’t happen as planned and he went full nuclear. He fell asleep not long after, but it was harder for Michael and I as we struggled to make sense of things, feeling the weight as we so often do, of being challenged with our little boy. Our little boy who has changed everything we thought we knew, not just about what makes a parent, but about what makes a person.
“I feel like he’s the biggest roadblock to his own happiness,” I told Michael. “His fears, his inflexibility. It’s like he has no sense of trust, no sense of wonder. Sometimes it’s like he’s missed out on childhood.”
It was a pretty dark moment for me. I don’t think that happiness is this thing to attain, that you can just make yourself happy. But Liam just seems so unhappy with everything, and his moments of joy are so fleeting, that it’s hard to bear as a parent. Being an inflexible kid in a fluid world must be terrifying for him, and starting at a new school–no matter how much they “get him”–is still beyond difficult. If only he’d reach back to me when I put out my hand…
But we had some wonderful updates from his teachers and director today. Even though he had some rough spots, which even he admitted, he’s making progress on the macro level. Public schools just aren’t equipped to give him this kind of attention, to step back from the noise of his misconduct and anger, anxiety and opposition, and look at the whole child. It isn’t going to happen over night. Liam’s not going to wake up one morning loving school or understanding authority or grasping the importance of respecting others. But we need experts to help us see the landscape and not mistake it for the shadows.
In a very long and detailed email from his classroom teacher, this bit gave me a profound sense of relief: “He is making unquestionable progress, and just today showed several steps in a positive direction–which are just the start of many, MANY more!”
The day wasn’t over after school, though. I picked him up early for an assessment over at TEACCH in Chapel Hill. It came highly recommended from Liam’s psychologist, but as we’ve found out, getting in and getting started took a while. We hadn’t found the right fit for him in most of their programs, but one came along that dealt primarily with high-functioning ASD kids and their fear and anxiety.
Liam was observed for an hour while I answered a long questionnaire conducted by two of their professionals (who were wonderful and warm and had a sense of humor, something that you can’t do without when dealing with this kind of diagnosis). I know so much of what he goes through is because of fear, but seeing it all on paper and hearing my own answers was a bit overwhelming. His fears really do get the better of him. Fear of failing, fear of disappointment, fear of the world ending, fear of being left alone, fear of bees, fear of costumed characters… it’s like the world is a labyrinth for him, stocked full of horrors. I do hope we get selected for this group, because their focus is on developing strategies to help him cope day to day. In and out of school, he certainly needs it.
It’s just part of the puzzle. There are so many layers to living with and working to nurture a child with autism, regardless of where they are on the spectrum. Every day is a fight. Every day is a surprise. We’re adapting every day and trying to anticipate frustrations–we’ve recently stocked my car with a shoebox of snacks so he has access to food as soon as he gets out of school since he’s often too hungry to let us know. Then he loses it. We’ve bought a new backpack with less frustrating zippers, along with a small fleet of Crocs, which are the only shoes he’ll wear right now. It’s a balance.
While we were waiting at the TEACCH office, I was reflecting on what I’d said to Michael about Liam’s happiness. For whatever silly reason, the song “Don’t Worry, Be Happy” popped into my head. That song came out when I was roughly Liam’s age, and I loved it. It celebrated the ability to detach from hardships–like my dad’s illness at the time–and be happy no matter what. It was infectious and joyous. And that sense of ebullience is something I hope, at least in a small part, he can start to understand. I started tearing up just thinking about the song. Of course, Robin Williams was in that music video, and that seriously didn’t help matters for me. But I got myself together. I took a deep breath, and moved on.
Worry less, not worry-less. I think it’s a lesson that we can both learn.