When I hear thunder, then I wonder / Is the rain above, or am I under?
~ Winnie the Pooh
Little darling, I see the ice is slowly melting
Little darling, it seems like years since it’s been clear
Here comes the sun, here comes the sun,
and I say it’s all right
It’s all right
~ The Beatles
As soon as people find out that you have a child with autism, it seems that their most common response is to try to hook you up with someone else they know who does too.
In the very beginning, I relished those connections. I jonesed for them like a junkie in need of a fix. I was desperate to find anyone who spoke the language, understood the angst, had a roadmap, might know of resources, or at the very least could prove by their very existence that this was survivable. I needed other parents. I described myself back then as the chick who was way too cool for a support group who desperately needed a support group.
One day I reached my saturation point. I needed to talk about something else. I needed to breathe. I needed to remember who I’d been before all of it. I needed to compartmentalize it for a while and just live. I couldn’t keep reliving the process day in and day out.
During that time, people started to ask me to be a resource for their newly diagnosed friend (or long diagnosed and still clueless friend) or their cousin/ sister/ aunt/ old girlfriend from high school/ grocery bagger/ fellow church member/ guy they just met at the gym who needed someone to talk to. I suppose it looked like I had my sh!t together. (Please stifle your laughter. It’s not nice.)
I felt awful, but for a while I couldn’t do it. I just couldn’t. Every time I lived through someone else’s story I was reliving my own. It was too raw. It was too fresh. My demons were too close.
Above all, I was stuck in all the anger. Every time I thought I’d managed to escape it, it turned up again around the next corner. So I had to learn to say no. Or at least, not yet. (I know many of you will not believe that I said no; but I did. Really.)
Over dinner with cousins this weekend, they mentioned an in-law whose son had just been diagnosed at the age of 9. He needed help. He needed a connection, someone to talk to. He was fighting himself. He couldn’t get past the guilt, the anger at himself for all the times he’d been hard on the boy because he didn’t understand. I flashed immediately to the same tired memory of raising my voice at Brooke years ago as I held her by the shoulders, angry that she just wouldn’t comply. Comply with what? Does it matter anymore? I don’t remember. I don’t care. All I remember was the anger. I was so angry.
I welled up. I went there. Just for a moment. I went to the rage, to the guilt, to the grief, to the utter bewilderment.
But it was different. For the first time it felt different. It was as if I were looking at it all from the other side of a glass window. I was fighting the wave that always comes, but it was contained by the glass.
As we talked about this man’s anger at himself for missing the signs for so long, his pain at denying what his wife seemed to know, his confusion – I realized that the anger was there, but it wasn’t mine anymore – not the same way.
I recently saw pictures of the house I grew up in online. It was for sale by its latest owner. I knew its layout intimately. I had lived in it for so long. It was achingly familiar. But the colors were different. The furnishings were different. It was smoother, brighter. I couldn’t claim it as my own anymore.
It was an odd feeling. I’ve carried that anger like an extra set of clothes for two years now. The anger at Luau for talking me down off the ledge when I just knew something wasn’t right early on, the anger at the doctor who dismissed my concerns about thimerosol in Brooke’s flu shot, the anger at the preschool teachers who never told us that she sat with her back to her circle of classmates or that she spent so much of her time chasing cobwebs into the far corners of the room, the anger at at the teacher from another class who called me at home to tell me not to worry – “Brooke just needs a little extra attention – she’ll be fine,” the anger at my genetic makeup, at the history of depression and mood disorders in my family, the anger at all the missed opportunities, all the birthday parties that she was never invited to. And of course, the anger at myself. I don’t need to tell you I saved the worst of it for myself – for letting anyone talk me down or dismiss me or deter me or placate me – how could I? – for letting my baby down.
I still fought back the wave. The wave of raw emotion. I felt such pain for this man, knowing so intimately the process of grief and anger and mourning and fighting, staring down an impossibly steep learning curve – the feeling of being completely overwhelmed, impotent, helpless, ignorant – all of it – that is coming for him.
But the wave was for him, not me.
And that was different.
It was like thunder from a passing storm. I could still hear it, but it had moved into the distance. The rumble was no longer threatening, or at least it wasn’t threatening me.
Maybe, just maybe, I thought, my experience getting through my own storm can help him get through his. I can teach him how to tape the windows and doors, how to stock up on some of the things he’ll need and how to avoid some of the things he doesn’t. Because even though the thunder’s not over my head, it’s still out there for someone else to contend with.
And maybe I’m just sitting in the eye of the storm, blithely thinking that it’s over. But please leave me be. I’d rather believe that I made it through. That doesn’t mean there aren’t more coming. This road ain’t without its storms. But I can handle them.
By my very existence I am proof that we all can.