Insomnia & Special Needs Kids

Amy,

I’ve been reading your column and enjoying it for years. I don’t know if this is appropriate for your advice column or the new teens/tweens column [from the editor: this is written by contributor Mir Kamin], but here goes. We are at our wits end!

My darling, silly, fun-loving 9 year old (almost 10) has had a hard time falling asleep for his entire life. He is our oldest (of four) and his bedtimes have always been more difficult than any of our other kids. He needs a lot of attention at night and has a very hard time settling down by himself. However it has recently become even more of an issue. Some background: About a year ago he was diagnosed with ADHD which made so many of his other behaviors make sense! We spent a few months getting the right med and dose, and are at a really good place right now. He doesn’t seem to be having any obvious side effects, except the sleep problems which may or may not be related. His psychiatrist said his stimulant could be causing sleep initiation problems and gave us the go ahead to give him low dose melatonin. Initially we would just give it to him if he couldn’t fall asleep but then he wouldn’t fall asleep until close to 10pm, so his psychiatrist recommended we give it to him every day at 8pm, which we have been doing.

Bedtime routine is thus: all screens off by 7:45 at the latest. He gets a healthy snack (and his melatonin) from 7:45-8:00. At 8 we do a prayer with the kids that are awake (the baby’s in bed by 7:30). He and his 7 year old sister head to the (very nice, non-scary finished basement) to brush their teeth, wash their faces, and get in bed where they read. My husband and I spend some time getting our 4 year old to bed, and at 8:30 one or both of us goes down to the basement and spends a few minutes talking softly or reading to the kids (they are in separate bedrooms), before turning off their lights and leaving. The 7 year old’s light goes off shortly after 8:30 and she falls asleep without any issues. A few months ago it seemed like the 9 year old didn’t need quite as much sleep so we let him read until around 8:45 or 9. We recognize he needs more hand-holding at night so we will check on him every ten minutes (quick hug and a “good night”) until he falls asleep. Occasionally this nice soothing bedtime routine works just fine.

But! Most nights he’s in and out of his room until at least 9:30 and sometimes until 11. The reasons vary: he’s hungry, he’s lonely, he’s scared. Some nights he is sobbing and in tears as we repeatedly take him back in his room. He wants every light on which obviously doesn’t help him feel sleepy. He sometimes gets very angry and throws fits, sometimes throwing things around the room. He’s become increasingly “scared” lately and so we have allowed him to make himself a makeshift bed out of blankets on the floor of the 4 year old’s room (which is right near ours) and he ends up sleeping there at least half the time. We’ve tried taking away privileges for bad bedtime behavior (usually taking away his beloved Minecraft) or doing some sort of reward system for good bedtime behavior. I bought a CD of relaxing bedtime visualizations and play it in his room, which only sometimes works. We talk about and have even practiced some techniques to relax and fall asleep. But still at least once a week he is up until nearly 11, inconsolable, refusing to lay down and sleep, and honestly making us so crazy we end up screaming at him. Eventually he gets exhausted enough from all his carrying on that he will fall asleep. At that point my husband and I are so agitated and frustrated that we can’t fall asleep!

I know it’s easy to blame the stimulant for these issues, but honestly he did this even before he was on the meds. Before we got the right diagnosis and treatment, his behavior was so frustrating in general that the sleep issues just blended in with the other challenges we were dealing with. Overall his behavior is so much better with the meds, that now this problem is more noticeable, if that makes sense. He wakes up at 7:30 am most mornings, even without an alarm. He occasionally wakes up at night and comes into our room needing a little comfort and we walk him back to his room, but this really isn’t a major issue.

We have been big fans of the early bedtime for our kids. We need down time to relax in the evening sans kids and this is truly decreasing our quality of life. Plus, since the baby goes to bed at 7:30 and the 9 year old doesn’t go to bed until 9:30 at the earliest, we are doing bedtime for two hours and it is wearing us out especially since we go to bed at 10 usually.

I really miss the days when we could have the kids asleep by 8. I recognize that as the kids get older their bedtimes will move later but I assumed they wouldn’t be so painfully frustrating. If he would just stay in his room chilling out, I really wouldn’t care if he stayed up late, but he is right in our faces crying and carrying on. Part of me thinks maybe he just needs more love and reassurance at night, but honestly he’s already getting more love and assurance than any of our other kids at bedtime. He seems to just want more and more no matter how much we give him.

Any advice? We have a visit with the psychiatrist & psychologist coming up and I will obviously be asking about this. But some real mom advice would be wonderful.

Oh my God, we just went through this. We are still going through this, although I BELIEVE we’ve finally hit upon our own personal solution.

Difficulty falling asleep is a really, REALLY common issue with ADHD/ASD/SPD kids. Both medicated and unmedicated. My son’s doctor floated out the idea that his sleep issues weren’t actually caused by his medication (although it can definitely be a side effect), but by the fact that it’s completely out of his system by bedtime. My son’s issues are more the fault of his various disorders being out in full-force. His nervous system is all on its own, and predictably going absolutely haywire right when he needs his brain and body to calm down and sleep.

Besides the melatonin, we also tried a second “mini-dose” of ADHD medication to kind of take the edge off his morning dose wearing off — something to keep him more regulated through homework and bedtime. I know several other parents with kiddos like ours who do this and have GREAT GREAT success with it, so it’s something to discuss with his doctors.

For my son, unfortunately, we didn’t really see any marked improvement in the sleep department, and my husband was super uncomfortable keeping him medicated almost round-the-clock like that. I believe going on the medication really has changed everything for the better, overall, but I still respect that these are powerful medications that can cause some unwanted side effects. Like…insomnia, which can create a lovely chicken-or-the-egg dilemma for parents trying to solve their child’s sleep issues. Even if my son’s insomnia was being caused more by his ADHD/sensory symptoms, I do think he gets some sleep-related side effects from his medication as well. So once we felt it was clear that the second dose wasn’t fixing anything, we started over and tried to find different solution.

We also use melatonin, but AGAIN, my husband can’t stop fretting over possible dependence, or at the very least cementing this idea that taking a pill = sleep, still can’t sleep? Take more pills. We’re completely fine offering it occasionally, as needed, but once my son started expressing anxiety/panic at the mere SUGGESTION that he try falling asleep on his own before taking the melatonin, yikes. What else can we dooooo?

Prior to our latest lightbulb moment (which I promise I’m getting to), we had some success with a change of scenery. If he couldn’t settle down after a reasonable amount of time in his room (usually spent reading), he was allowed to go sleep in the guest room. Similar to what your son does with his pile of blankets in your room.

I thought maybe he just needed the environment reset when it dawned on me: He kept talking about how much he liked the bedding in the guest room. It used to be on his bed when he was younger, and the quilt is thick and heavy and substantial. He currently has a light fluffy duvet cover and a regular blanket.

OH MY GOD. HE NEEDED A WEIGHTED BLANKET.

Weighted blankets are a really amazing thing for children and adults with ADHD, ASD or just general sensory issues. We’d inadvertently provided Noah with one for years, when he slept with a quilt that was relatively heavy compared to his body weight. His sleep issues actually started when we swapped the kids’ rooms/beds around and got Noah new, lightweight bedding from Ikea. (He sleeps on a top bunk and was also complaining about being hot/sweaty, so I thought I was doing him a favor by going lighter.) We were blaming the meds, when actually we’d taken away an important self-calming tool.

So I ponied up the money and invested in a real, proper weighted blanket for his bed, one that would provide the calming sensory input he needed without having to pile under a ton of heavy fabric. Given his weight (and the fact that I would definitely classify his sensory issues as severe), I ordered a 16-pound, twin-sized blanket. (As the Forbes article points out, there are just a few companies that make them, so they are pricey and typically made to order. I went with the Magic Blanket.)

It’s early, but I really think we’ve found our go-to solution. My son has been so miserable for so long that anytime I offer him anything that might help him sleep he jumps at it, which isn’t a common occurrence with a kid who can be rigid and resistant to change. He crawled under the blanket right away and sighed a deep, contented sign because it felt so good, “like a big hug,” he said.

So if you can afford to splurge a bit on a weighted blanket, I highly HIGHLY recommend you try one, especially before worrying too much about changing his bedtime. His sleep troubles probably have very little to do with being tired vs. not-tired, but are more of a manifestation of an unregulated nervous system that can’t calm itself down. (Which is why, even though it didn’t work for us personally, I mentioned the possible second mini-dose of medication. That has worked like gang-busters for other kids. So obviously still talk to his doctor about that.) Good luck! Let us know how it goes, even if the solution is NONE OF THE ABOVE, AMY.