Charles’s sleep issues started when he was a baby. He rarely napped and if he did it was a 15-minute catnap in the car. If I took him out of the seat, he’d wake up and be done with that sleeping stuff. By a year old, I was struggling for personal time because Charles was a demanding child insisting on sleepovers and playdates 24/7. He’d keep them up all night and as a result us, too.
When one kid left, he expected another to come right after and he was relentless with those spend-the-night requests. Charles never went to sleep before 9 pm even as a baby. Getting cats to line up in a row would have been easier than trying to get him on a schedule. I think he probably had a diagnosable sleep disorder at 18 months although no one diagnoses it at that age.
I wondered what I was doing wrong
I took it personally. I read all kinds of sleep books, followed the directions, and listened to our pediatrician. Still, his sleep issues prevailed. I mentioned it to the doctor and he didn’t have any answers. But in all fairness, there wasn’t much in the way of facts or details that would indicate there was a problem or what to do about it.
One time at his grandparents around 5th grade, he begged to stay up all night and I took that to mean he didn’t want to give up on the day. But that wasn’t it.
I think he thought staying up might be more fun than tossing and turning for hours. To a child who craved connection, nighttime was relentless and insufferable.
Elementary school
By elementary school, we’d put him to bed, and yes we had a routine, but he was unable to fall asleep until after 11pm. By 10pm he’d beg me to come read him another story and I was always shocked he’d not fallen asleep.
We worked on it together, going oversleep hygiene, taking soothing baths, and trying to watch his caffeine intake which was not easy. I remember buying a flashing blue light that was supposed to help. It didn’t. We had blue light blockers on all of our computers and there was no screen time during the week after 7pm. I had special blue light blocking light bulbs on all the lamps, we tried blue light blocking glasses which I wore to support him. (By the way, they made me very tired but did nothing for Charles.) By middle school, he was unable to fall asleep before midnight and we switched him to a private school that was very close and started at 8:30 am and he was always one of the last students to get to school.
A diagnosis
It was in middle school, that I finally saw a pattern and began researching and it appeared he might have DSPS, Delayed Sleep Phase Syndrome which he was eventually diagnosed with officially by a sleep doctor. Now it’s often called delayed sleep-wake phase disorder (DSWPD). I wondered if it was his ADHD, or maybe that he was bipolar, both of which were ruled out although I think the ADHD was involved somehow.
While he stayed awake at night and could be creative then, he was never manic. I took him to an endocrinologist and a sleep doctor and we tried biofeedback to the tune of thousands of dollars. I remember the doctor telling us that sometimes the biofeedback didn’t work for ADHD but it almost always made kids very sleepy. Not so with Charles. What had been 100% side effect of sleepiness didn’t happen to my son and we were crushed. He was crushed.
High school
No phones were allowed in the room once they were old enough to have one which, back then, was at least 9th grade. By high school, his circadian rhythm disorder clock had advanced again and it wasn’t until 2 am that he was able to fall asleep. Even 2 am was not a guarantee and he’d sometimes go two nights having barely catnapped. Usually, this was in response to something he was anxious about. We were able to adjust his school schedule. He’d not graduate with honors with the reduced hours, but he could still graduate. Waking him out of dead sleep at 6:30 just seemed too cruel and his getting rest was more important to me.
One day my husband and I walked in the house, a Saturday I believe, and Charles was asleep on the sofa. We stood there stunned as this never happened. Ever.
I looked at him and he at me and in unison, we said, “He’s smoking pot.” We were right and Charles thought he’d found the magic drug. Like all kids who use marijuana to manage anxiety or sleep, they think it’s the answer. While we didn’t allow it, stopping the behavior proved to be difficult despite traditional punitive measures and conversation around what it does for the developing brain. To Charles, all this was “natural” so there was nothing wrong with it. And it worked. Furthermore, it worked to help him forget his thoughts of suicide–which we didn’t know about.
Marijuana didn’t work long
And then it took more to get the same result and he was irritable and moody, falling asleep in class and his behavior became more erratic. He wasn’t oppositional nor was he a discipline problem in school, but I could tell his use was starting to affect him negatively. So when that didn’t work, he would use alcohol to help and eventually a lot of other drugs. There is evidence of some psychosis. Testimony from a couple of friends and his brother where he admitted to them he was hearing voices. But once he moved from marijuana to heroin, that subsided. I certainly thought heroin was the worst drug at the time but is it really? More accepted maybe but certainly not harmless.
His drug use started because of sleep issues. Lack of sleep and more alone time at night frustrated exacerbated his thoughts of suicide which made him more determined to find pills and drugs that worked. Both exacerbated or triggered his depression.
Why did his brain light up at night when everyone else was settling down if he wasn’t manic? His brain wouldn’t let him rest and of all his issues, this was what we struggled with the longest and could never resolve. It’s still the one piece of our puzzle for which I have the least information.
I have learned that while some new methods of shrooms, etc or ketamine may help depression it’s not recommended for anyone on the edge of psychosis. It’s best to have a full/extensive psych evaluation done first (roughly $7,500), before entering into a treatment that could potentially cause more harm than good.
They need to do these before prescribing meds. I remember asking for one and they kept saying it was “unnecessary” because charles was “obviously not depressed.” He’d get one later in wilderness that diagnosed him with major depression.
I have read ur posting with great interest and feel great sadness for the terrific loss of ur ay oy. sorry I’m missing the key between V and N. I was wondering if u were aware of the research using psychedelic/magic mushrooms/shrooms currently conducted at John Hopkins Hospital in the treatment of depression. The results look promising and I think are worth a good look. Given my experience in the past with the mushrooms I can tell u from 1st hand experience it is indeed a mind-expanding experience. In my case, I for sure felt a closer connection to the entire world in general and saw the world thru the eyes of a child once again, 4 lack of a better phrase. I would caution anyone interested to read carefully. have ur experience in nature and have a ‘minder’ on hand. The utter delight in really looking at a leaf and the intricacies of the cells and veins can take you to that new connectedness I mentioned before. I hope this information is useful. To post or not I will leave in your capable hands. Cheers
As I attempt to post I keep getting a warning about duplicate
The research on psilocybin is promising but incomplete. I have asked a cornetist who is involved in ketamine to give me feedback from a conference he will attend this month. So we don’t really know yet. But I can say that self administration is likely not to get the intended results. At least that’s what I am Hearing so far. Thank you for your kind words.