There but for the Grace

I haven’t been posting anything about Jack lately. Partly because I’m preoccupied with my own organs, but also partly because things with Jack have been pretty difficult.

Jack has always been a night owl, since birth. But since he was about five or so months old, we could count on him to sleep pretty solidly through the night. His typical sleep times are about from ten pm to eight am. It works for us, because Brian and I are both night owls, too. But last week, Jack was waking up two and three and four times every night, screaming. At first we were alarmed. We ran to his room. Had he fallen? Was he hurt?

We were taking turns with him, so it took us a couple of days to collect the data. But it finally dawned on us that Jack was always asking for his toy seahorse that plays music and lights up. And almost every time, the seahorse was right next to him on the bed. He knows how to keep this seahorse playing, which he does most of the time every day. It wasn’t out of batteries. All he had to do was push the seahorse’s tummy, and it would light up and play music for about ten minutes.

So for a while, we just turned it on for him and left. Then he’d start screaming again as soon as the seahorse stopped playing. So I figured I would just stay with him until he fell asleep. I asked him if he wanted me to stay or to go, and he always said stay. So I did. But after three nights of this, I was bleary eyed and going slowly, torturously insane. It reminded me of his newborn days, and as I had found out then, sleep deprivation doesn’t just make you tired. It makes you crazy. Bad crazy.

Brian was the same way, because even if I was the one who went into Jack’s room and stayed with him, the screaming still woke Brian from a dead sleep, and the shock of it kept his adrenaline pumping for an hour or more. So none of us was sleeping.

But this is really a minor complaint. There are autistic kids out there who never sleep. Or sleep only three hours a night. I’ve recently caught up with the Kelli Stapleton case, through Mostly True Stuff. The mom who runs that page has a boy with autism, a girl with Down’s and autism, and two more kids. She was friends with Kelli Stapleton, who a little over a year ago, tried to kill herself and her teenaged autistic daughter by asphyxiation in the family car.

Kelli’s daughter, Isabelle, had already beaten her mother so badly that she was twice hospitalized. Her violent outbursts were always directed at her mother. And one day, Kelli just snapped. She had been fighting hard for her daughter to get appropriate services and support, in a way that would not lead to any more hospitalizations. She was tired and stressed out and not getting a lot of help for herself. After Jack’s one week of sleeplessness, I was about to jump off a bridge (if they had any in Colorado). I cannot imagine having a teenage child beating me up every day. By the time Jack is twelve or so, he will be taller than I am. The idea terrifies me.

I don’t excuse Kelli’s actions. But I can understand them. Raising kids with special needs is freaking hard work, and we don’t talk about it, and no one else seems to realize how difficult and relentless it is. Luckily, Kelli and Issy both survived. Kelli has been sentenced to ten to twenty-two years of prison for her crime. Her husband has divorced her, and now he is the sole caretaker for Issy and two other children.

Jack’s now back to a pretty normal sleep routine. We finally decided to let him cry it out and find the seahorse for himself. We figured that our rushing into his room only stimulated him more and kept us all more awake for longer. So far, so good. Jack had one crying wake-up the first two nights, but both times was able to find the seahorse on his own and turn it on and calm down.

We are lucky. We. Are. Lucky. We aren’t better parents than Kelli Stapleton. We’re just lucky. When I hear stories like hers, I just think to myself, “There but for the Grace of God go I.” And I’m thankful.

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