I remember that night like it was yesterday.
February, 2008. I’m with Howie. He’s just a few weeks shy of two years old. We’re at Children’s Hospital. It’s 8 o’clock at night.
He’s being very good as they attach about 20 wires to his head. His eyes are fixated on “Curious George” on the small TV hanging from the ceiling. He starts to squirm a bit – the smell of the glue is starting to get to him. I hold him tighter, telling him it’s almost time for sleep.
We’re there for an overnight sleep study. At almost two, he still had never slept through the night. Not once. And he wouldn’t sleep alone. After a year of trying everything possible to get him to sleep, we’re at the hospital to make sure there’s nothing else going on.
I’m told to hold him in the bed until he’s drifted off. The technician would whisper into the speaker when it was okay for me to move to my tiny bed across the room. We would do this dance 5 times during the night. It was the worst sleep of my life.
The results showed “abnormal brain blips”, so we returned a few weeks later to get fitted for a 24 hour EEG. I was six weeks pregnant with Lewis and beyond exhausted. I held my newly minted two year old down as once again wires were attached to his head. This time, he screamed. We had to restrain him.
Two weeks later, I sat in the presiding doctor’s office. He described the abnormal brain blips as “benign rolandic epilepsy”. He told me to watch Howie when he drifted off to sleep, particularly if it happened in the car. Then he told me it was nothing to worry about, and if we didn’t see a seizure by the time he was 11 or 12, then he would be fine.
Oh, and by the way, it has nothing to do with why he won’t sleep, he said. Just leave him in his crib to cry. If he throws up, clean it up and put him back. He handed me a sheet on how to change his sleep behaviors. To undo what we had been doing wrong.
I remember it all like it was yesterday. His words still make me want to throw up.
To this day, Howie does not sleep consistently.
But now I know better. At the time of our sleep study, we didn’t have an autism diagnosis or even a sensory processing disorder diagnosis. We had nothing but my anecdotal data and the belief that he woke up every time he peed in his diaper. The knowledge that he had to be touching me when he slept. The feeling that everyone judged me because my two year old slept in bed with me.
Now I know. I know that this is not a behavior issue. I can’t “sticker chart” him to stay in his bed all night. Believe me, we’ve tried. He comes in, we bring him back to his bed. I stay until I think he’s asleep, then I wait five minutes more just to make sure. An hour later, he’s back again.
Gerry and Lewis started off in our bed too. Through behavior modification, they both returned to their beds. And they sleep through the night.
I know this is something different for Howie. The melatonin has made a huge difference – it no longer takes him hours to fall asleep and when he does wake up in the middle of the night he goes back to sleep fairly easily. We’re not spending hours at 2am flipping through pictures of Story Land to calm him down.
I know that his diet plays a part. When he eats something that bothers him, he’s up for nights in a row.
I know that sensory inputs are important. He sleeps under weighted blankets and three other covers. He’s in long sleeves pajamas in the dead of winter and the scorching heat of summer. Our house is kept at a constant temperature at night no matter what the calendar says. No windows open while we sleep.
I know that he needs to fall asleep with me there – his arm “tunneling” into my neck on one side and my arm tightly wrapped around him. I’ve given up caring what the “experts” say about sleeping with your kid. I need to do whatever gets us through the night unscathed.
But I can’t always predict the triggers that wake him. And even when he doesn’t wake up…I do. Expecting him to come in at any moment.
After 5 years of this, I don’t remember how to sleep anymore either.
His sleep issues aren’t just a problem for him. It affects our whole family. I can’t remember the last time I got eight hours of straight sleep. Tim and I can’t get away for a night just us. We’re keeping our local Dunkin’ Donuts in business.
There are days when I’m beyond tired. And I’m tired of it.
Every family with a child on the spectrum has pieces of the puzzle that they want solved. For us, our missing piece is sleep.
I just want that puzzle solved.
“Whatever gets you through the night it’s alright, it’s alright
It’ your money or your life it’s alright, it’s alright
Don’t need a sword to cut thru flowers oh no, oh no
Whatever gets you thru your life it’s alright, it’s alright
Do it wrong or do it right it’s alright, it’s alright
Don’t need a watch to waste your time oh no, oh no” - Whatever Gets You Through The Night by John Lennon