“This is what he did to me last week,” she said, rolling up her to sleeve to reveal extensive bruising on her left arm. “I’ve been wearing long sleeves to work all week even though it’s ninety degrees outside.” She wasn’t referring to an abusive husband or partner. She was referring to her child, her son with autism. “This is our last chance. If this doesn’t work…”
It’s a story I’ve heard in many variations as a doctor, one I’ve told myself as a mom. The details differ but the thrust is the same. If this doesn’t work: they’ll take him away, he’ll have to go on psych meds, I’ll have to put him in placement, he might hurt his little sister (even worse), I don’t know what I’ll do.
We had a padded room in our basement that we soundproofed. It was for when our son had his meltdowns which occurred daily, sometimes multiple times a day. It was for his own protection, and for ours. Something small would set it off: telling him he had to stop playing army and come to the table for dinner, asking him to take out the recycling. Sometimes it seemed to come out of nowhere. Screaming, falling to the floor, biting and kicking, banging his head against the wall, flailing, wailing and gnashing of teeth, tearing of clothing. A deep guttural cry of biblical proportions. Primeval and without words or rational sense. From a depth of pain that predates civilization. Beyond and before language.
We could not do things that most families take for granted: go out to eat, go on vacation, have a pleasant family dinner. Ever. Everything revolved around trying to maintain some semblance of calm. The rages terrified his littlest siblings. His brother, who is only a year and a half younger, was just used to it. It was his normal. It didn’t phase him except to annoy him. And that was saddest of all.
There was nothing you could do once it started. I could spot it coming better than anyone else. I could feel it the way you see people in a natural disaster movie, noticing the quite and calm right before the tsunami hits. If I was lucky, I could get him to his room before it started. Most of the time it was too late. When he was little, we’d pick him up and carry him out. As he got older and bigger, we had to count on intimidating him into going willingly. We’re lucky he did most of the time. A lot of families aren’t so lucky. I’m lucky my husband was handy enough to build a padded, soundproof room. Lucky.
When he had his meltdowns, my husband was frustrated. He tried to protect the younger kids. His heart didn’t break for my son like mine did. I was worried for my other kids; I was frustrated and overwhlemed by the sheer volume of it; I was protecting myself; but deep in my core I was crying with the sadness of Rebecca. The noise and the violence of this five foot ten person was coming from a place of fear and sadness and helplessness and despair. From my baby. Out of control and lost and suffering and crying out in the wilderness.
So, we fought. My husband and I fought. We should go on vacation without him, my husband argued. No, I said. He’s a member of this family and we’re not doing that, I countered. It’s not fair to the other kids, he said; not fair to us. He said I was allowing one child to take precedence over the other kids. I said, this is all our cross to bear, not just his. He said, he wouldn’t want to go on the trip anyway. He needs structure. He’d be happier staying behind in camp. And so we went. And I was sad the whole time. My husband was right. My son didn’t mind not going. But I was still sad the whole time.
The bigger and older he got, the more worried we got. Who will he hurt, how will the police react to him melting down in public. He hurt a three year old neighbor girl, the daughter of someone I was working with. I cried when I called her to apologize. He was upset afterward because he was afraid he’d get in trouble. He didn’t understand why it wasn’t okay to attack someone ten years younger.
And then came medical marijuana. We hoped it would help some. Take the edge off maybe. But it didn’t. It did so much more than that. The meltdowns stopped. Stopped. They. Stopped. Fo