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Insomnia & Special Needs Kids

Insomnia & Special Needs Kids

By Amalah

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.

Amalah
About the Author

Amy Corbett Storch

Amalah

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Ama...

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Amalah. Also, it’s pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.

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Comments

  • Nicole

    As I was reading this question, I kept thinking DOG! Get the boy a nice big fluffy dog to lay on him at night and snuzzle his face and sigh deeply against his body all night long! And then, of course, I read Amy’s reply and the weighted blanket is also great advice, esp for allergies or if your family can’t handle a medium to big dog for whatever reason.
    Good luck!

  • yasmara

    I know it sucks for kids, but I would also add to shut off screen time earlier. There’s a lot of good research out there about the connection between lighted screens and sleep disturbances. With my difficult sleeper it definitely seems like there’s a correlation between screens & ease of bedtime. It’s partially content (he gets really wrapped up in it & has a hard time transitioning his brain to relaxation) and it’s partly the light/stimulation. Try cutting off screens by 7pm at the latest and see if that helps too.

    • Kate

      If stopping the screens earlier isn’t really doable you can get filters for the screens to mitigate the effect of the blue light. There are actual physical ones as well as apps and programs that let you adjust the color of light coming from the screen.

  • Lisa

    My chiropractor (who is big on natural remedies) suggests magnesium supplements for people w/ sleep issues.  Sometimes, lower magnesium levels keep us awake, and a small does of magnesium helps us fall asleep.  We have been using it w/ my toddler, and it seems to help her sleep longer/better.  You have to be careful though, because too much magnesium has a laxative effect.  🙂  

    • Kate

      Epsom salt baths are good for this and have the added calming benefit of warm water (and of course no screens in the tub). 

  • R

    EXERCISE!!!!

    • E

      Seconded. Can you make sure he has some really active time every day? Maybe you are doing this already but exercise is the only thing that works for MY insomnia (quiet a busy mind), and I’ve read that it is also helpful re: ADHD.  

  • Jeannie

    I second the screen time thing. My son is a bit of a problem sleeper and so we have a no screen time after dinner rule — but we have noticed that if he has no screen time at all after school, he falls asleep much easier. I know the recommendation is two hours before you want to fall asleep, but maybe for kids with sleep issues, that’s not enough, and four or more hours is more effective.

  • Jennifer B

    We do not have a kid with a diagnosis, but we suspect that she’s borderline ADHD and we have had sleep issues from almost the beginning.

    What finally helped the most for us was giving our daughter something to listen to as she fell asleep – it seemed to help her “turn her brain off” which she couldn’t seem to do on her own.

    Slightly monotone rhythmic music helped for a while but by this age she was listening to storytelling on CD’s by Jim Weiss. He has a wide variety of stories availalble from fairy tales to Shakespeare and greek/roman myths, which at the preteen age got a lot of airtime.

    I think the weighted blanket is a brilliant idea too, and wish we had been given that suggestion 10 years ago as we were struggling with this the most.

    Now, as a teen we let our daughter mostly self regulate and bedtime is OK.

  • Chiara

    If money is an issue, there are lots of tutorials online for how to make a weighted blanket (here is one: http://www.ashleyannphotography.com/blog/2013/10/08/weighted-blanket-nana-to-the-rescue/). 

    • Ros

      Oh, man, THANK YOU – I’m making one for myself. I have the worst time sleeping in summer because I can’t sleep under my super-huge duvet and don’t sleep well when I don’t feel wrapped up.

  • Kay

    Highly recommend the kid’s workbook “What to Do When You Dread Your Bed.”  

  • Lindsey

    I second the music suggestion. Even as an adult, I need white noise in order to not focus on the random noises of the world as well as my worries.

    My other suggestion would be some lights with dimmers or red bulbs, which would allow the light to still be on, but don’t signal awake to your brain.

  • Meg

    My phone just ate my longer comment, but I would suggest splitting up at bedtime, with one parent going to tuck in the 7 year old, and the other the 9 year old. Turn off the lights, or dim them way down, and plan to just sit and talk calmly to him for 15 minutes about whatever is on his mind, and then leave him with the lights off (or only a nightlight). With 4 kids, he might just want some 1 on 1 time, and it also sounds like he can’t handle reading until 8:45  and being trusted to turn out the light and sleep on his own, so you need to do it.

    Also, instead of the 10 minute checks, could you do it CIO style, where you make the time between longer as long as you dont hear any obvious signs of him up and about? Popping in ever 10 minutes might just be riling him up.

    Also, if sleeping in a nest of blankets works, go with it. We’ve found with my son going with a “I don’t care what you are doing in there but no lights other than the nightlight and you have to stay in your room” policy works. Sometimes he winds up sleeping on the floor in a nest of blankets, but whatever, he’s sleeping and not bothering us.

  • My son is super anxious and bedtimes often involve him working himself into a panicked tizzy over things I can’t change (like the placement of a heating vent or the kind of bed his sister is sleeping in). Lots of other great suggestions in the comments (and I’m looking into those weighted blankets, maybe my kiddo would benefit from one!) but just wanted to say that if you’re okay with the melatonin, that has really been a life saver with him. I know from personal experience with melatonin supplements that not all of them are created equal (the kind with additional herbs in them gave me crazy dreams, and unless I used a time-release formula I’d wake up a few hours later wide awake again) and I know with my son that when he grows his dose needs to be adjusted. So if you’re not seeing any effects from it, you might want to try a different kind or find out if the dose could be higher. But good luck! Terrible bedtimes are terrible for everyone :\

  • J

    I’m a little surprised that this hasn’t been mentioned yet, since it seems like the cheapest, least hassle solution that you already know works… If your son does better when sleeping in the same room as the 4yo, then just move his bed in there. It’s perfectly normal to prefer to share a room (the majority of the world shares rooms/beds either out of necessity or choice – humans were never meant to sleep alone!). I suspect that just hearing his sibling breathe and move about is very reassuring.

    Something that I love for my son is the Drift Light. It dims over 37 or so min, and is the perfect amount of wind down time and great for kids who don’t want the lights off when the parent leaves. It’s like a sunset for those winter months! Inexpensive, simple.

  • S

    Huh, just talked to the docs about this today, too! We already do weighted blanket and melatonin. A sleep study was suggested to rule out seizures and sleep apnea. 

  • Christy

    Just wanted to stop by and suggest that you do research on anxiety vs. ADD and ADHD. I have a kid with what we originally thought was ADHD and had been diagnosed with an anxiety disorder now as a teen. Through all of my research, I’ve discovered that anxiety can present JUST LIKE ADHD or ADD and stimulants may appear to work at first but actually cause more anxiety problems in the long run. Just do some research and talk to the psych. Good luck!

  • OP

    Hi, I am the original letter writer. I just wanted to say thanks so much for everyone’s suggestions. What a lovely and supportive community. So many good suggestions that I need to consider.

    Since I wrote the letter several days ago, I’ve had some time to try some things a little different that have helped a lot. I just want to share them in case they help someone else is in the same position. Basically, we end screen time as early as possible, usually no screen time after dinner. Then at around 7:45, the whole house goes pretty much dark. We turn off nearly all the lights, use some electric candles and keep things extremely quiet. We talk quietly and keep the kids from getting wound up. We read a couple quiet books, eat a snack quietly, and then quietly get them to bed. This has helped so much. If we notice any anxiety or stress starting to happen, we try to defuse it very quickly. He has actually been falling asleep almost every night between 830 and nine. It has been wonderful. We spend a few more minutes then usual right before turning off the lights, sitting and talking quietly, rubbing his back, etc. I think he would actually do awesome with a dog or in his brother’s room but it just doesn’t work right now for a variety of reasons I won’t get into.

    I really appreciate everyone’s input. I will be mulling over the suggestions to see what else we can incorporate. He’s an extremely active boy who plays on a competitive soccer team, and the end of the regular-season coincided with the sleep issues getting a little worse. So I think physical activity is important. Thanks again everyone.

  • Morgan

    I have a friend who makes weighted blankets – http://hippohug.ca/ . Just an option if you do go down that road.

  • Liz

    This sounds like great advice. I’m probably being a worry wart, but I want to add that weighted blankets are not safe for tiny babies who are having sleep problems. (Pretty sure I read once on the google about a baby that suffocated under a weighted blanket while at day care.) Sleep deprived parents of babies, this is not your answer. Keep looking!!

    OP, best of luck. I hope this helps your family sleep better asap.

  • Lauren

    Some aromatherapy/essential oils may help calm him at night. Lavender and frankensence are both safe for children (when diffused or highly diluted) and are super calming. We use them on our 4 year old of crazier nights or if she has trouble sleeping. The website http://www.learningabouteos.com is a great resource for using the oils safely.

    Good luck!!

  • Kim too

    I fight this with my kids all the time – bedtimes absolutely suck, despite routines, despite everything.  But it’s a family problem – neither my husband not I get to sleep easily, either. Between the four of us, three of us have ADD, two have sleep apnea, tow of anxiety, and my youngest has all three.
    Couple of suggestions:  a. a sleep study to rule out sleep apnea, which can mimic ADHD. b. both my child and I have an extremely hard time falling asleep on extended release formulations. We do much better on short acting meds, although taking the second dose can be a hassle.