“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. For the first time since he was a newborn, he was peaceful. Not restless or perseverating or labile or distracted or angry or out of control. And not sedated or high or out of it or drooling in the corner. He was himself but peaceful and calm. How is that even a thing? No meltdowns the first day. And none the next. And the next. And before you know it we’re three months in and I’m saying to my husband: remember how he used to have metldowns everyday? And he’s saying, oh yeah. That’s so weird. He hasn’t had one in a while. No, I say, he hasn’t had one in three months. And then it’s six and then nine and then twelve…
And we go to the park on the fourth of July and he grumbles but he spends all day sitting in his chair in the sand reading books about world war 2 and going in the water and eating hot dogs. And he sleeps now. For the first time in fourteen years he sleeps. Melatonin and sleeping pills and sleep hygiene and yoga and calming sounds and stories and weighted blankets didn’t do jack. And now he sleeps. And so we sleep. For the first time in fourteen years I sleep.
He is not restless and he does not ask the same question over and over and over and over and over. He seems happy and he plays with his siblings and they play with him. And you fill out all those damn behavioral questionnaires at the beginning of the school year where they ask you the same questions a million different ways and have you circle numbers with 1 for Never and 5 All the time. And you look at your answers and say, shit. This is crazy. This isn’t my kid. This is amazing.
And he’s so damn calm he starts making progress in school in things he’s been working on for a decade. And something incredible happens: you go out to dinner. And he annoys his brother but it’s fine. Its’ like other families who go out to dinner and the kids annoy each other. And you decide to do the impossible: you plan a family vacation for the entire family. And there are a lot of things you can’t do on this vacation because he’s still autistic and a lot of other things, but who the hell cares? You’re going on a damn family vacation. With the whole family.
There is an autism we don’t talk about in our culture: concussions and bite marks and locks on bedroom doors and windows to prevent night time eloping and fifteen foot drops to the pavement below, PTSD and homes that are prisons and friends and family that are traitors. These families are offered inpatient psych stays and antipsychotics and a whole hell of a lot of looks of pity and thank-god-it’s-not-my-family and wow-how-does-she-do-it-now-pass-the-popcorn-and-look-at-this-picture-of-my-little-jimmy-getting-his-award.
And there is marijuana and it helps. And I thank God and his angels for that. Because the neurodiversity of autism is not a blessing, but our children and medical marijuana are.