I would go so far to say that he has insomnia. He goes to bed fine, and is usually there around 8 PM. He is happy and content. But the kid cannot go to sleep. If he was asleep before 10, we considered that a victory. Most nights I couldn’t tell you when he went to sleep because I would go to bed around 11 and he would still be awake. There have been nights that I know for certain that he didn’t go to sleep until around 5 AM.
At first we wrote it off to adjusting to the new time zone and to his new life. At one point, I thought it was somehow behavioral. And I also thought that he was just trying to “work” us. After all, we were told that his normal schedule in Korea was a midnight bedtime. We weren’t bending though.
I am a part of an online group that centers around schizencephaly and had been reading that many of the people affected by this disorder struggle with sleep. So I called Matthew’s neurologist and asked if there was anything we could give him to help with sleep. After learning that he cannot tolerate Benadryl (giving him that is like giving him a 6-pack of Red Bull), they prescribed a prescription sedative.
At first I was relieved to be getting some (doctor approved) help. But sedatives? For a 3-year old? It really made me uncomfortable. I filled the prescription and waited. I was scared–after all, Matthew had a bad reaction to being sedated in the hospital. He stopped breathing. Even though I was told it was safe, it took me weeks to try it.
The night I decided to give it to him, I administered it at 6 PM, thinking he would be passed out by 7:30. I put him to bed and waited. I was scared. Every so often we would sneak upstairs and listen outside his room. I kept telling Jason to make sure he was breathing. The child managed to stay awake until 9:45. There is no way medically that he should have been able to do that. Also, I didn’t consider that a huge success. And I didn’t want to give those sedatives regularly (and according to the label I wasn’t supposed to give those sedatives regularly), so I scrapped that idea.
Then about 10 nights ago, Matthew was awake until 4 AM. That was it. I couldn’t take it anymore. Not just him being up, but the fact that we have dealt with the aftermath of a sleep deprived child every day for almost a year. I knew he couldn’t help it and I knew he was even more miserable than I was, but I still didn’t know how to help him. When I would go to bed at 11 PM and hear him still up in his room, I would experience what I call the “snowball effect”. My inner monologue would go something like this–great, there’s no telling how late he will be up. He has to get up at 6:30 for school tomorrow. I can’t just keep him home, he needs the therapies. No wonder he is always in a bad mood, no wonder he is having trouble learning. He is sleep-deprived. He will probably never grow past 27 pounds because the body needs sleep to grow. Now I can’t sleep because I am so wound up about this. GAAAAHHH!!!
So I decided to forget the neurologist and I called our pediatrician, who I love. I poured out all of our problems into the phone and asked if melatonin was an option. I had done some reading online and found a number of parents of autistic children singing its praises, saying that now that their children were getting sleep they were so much calmer and even-keeled during the day. I wanted it. And I wanted it now.
After the nurse checked with the doctor, they explained an appropriate dosage to me, and they gave me the thumbs up to try it. When I saw it on the shelf at the store, and the label said clearly, Not for children under 12, I almost chickened out. (The only extreme sport I play is extreme rule following.) But I repeated my mantra as I walked to the cash register: the doctor said I could, the doctor said I could.
We gave it to him that night. After putting him to bed we stayed downstairs for about 30 minutes and then we thought to check and see if by some miracle he was asleep.
AND HE WAS. At 8:45. A bona fide miracle!!!! He was even on his pillow and under his covers. Usually it takes him so many hours to fall asleep that he is hanging off the end of his bed when his body finally gives out.
Wow. I have been worried that it was a fluke, but it has been going well for a week now. And we have seen such a difference in his attitude. A HUGE difference. I am hoping his teachers are noticing the difference too.
It is definitely making a difference for me too. And not just in how I relate to Matthew. You moms out there will understand that there is a switch that you can almost turn off when your kids go to sleep, whether it be naptime or bedtime. You can relax to an extent that is completely impossible when they are awake. That is why when Isaac doesn’t nap–even if he stays in his room the entire time–I can’t get as much done as I can when he does nap. A part of my mind and my energy are still with him. That was happening to me at night and I was never getting to turn it off because I knew Matthew was awake. My relief at night, now that he is sleeping is almost palpable….not to mention my joy at the good attitude and smiling face I am now experiencing in him during the day!
I am hoping that now that he can experience consistent good night sleeping, we will see a snowball effect of another kind–language growth, social and emotional development, happiness….who knows, maybe he will even start to grow out of his 24-month pants. The possibilities are (hopefully) endless!