A Melatonin Muddle

Boy lying on grass in front of castle ruins

We are luckier than many, when it comes to sleep.

After a rocky start, like most babies, my boy started sleeping through the night at around 18 months. And so it has been since then, for the most part. Oh, there have been times of illness and stress, patches where he wakes frequently in the middle of the night – but generally, I cannot complain about the amount of sleep he allows us.

At 7.20 pm sharp, he exits the bath and is wrapped in a big fluffy towel. Once he is snug and dry, his father reads to him. Sometimes he likes stories – Roald Dahl and Harry Potter are his favourites – but he also likes factual books, books about castles and kings and queens and planets and moons.

At 7.30, I come in to say goodnight and I lie with him for a while, watching the electric blue stars from his space projector whirling about on the ceiling. He likes me to ask him Maths questions and talk about his day. When I leave him, at 7.40, he snuggles down with the ‘Bed Bear Guardians’, Teddy, who he had had since he was a baby, and Big Blue, who I crocheted for him this summer. They keep him safe, you see.

Two teddy bears, one brown, one blue, lying on a bed with a blue-checked duvet.

Sometimes, on the rare occasions that he does scream out in the middle of the night, it is because he has lost one of them. His father or I must retrieve a bear from the floor or the gap between the wall and the bed. He clutches them close. When we check on him, he is always asleep with his arms around one, or both, of them.

Why then, you might be asking, is this post about Melatonin?

You see, this is not the whole story. When we leave our precious boy at 7.30, he rarely sleeps right away. In fact, most nights we hear him talking to himself for a few hours. He falls asleep some time between 9.30pm and 10.30pm and the monitor finally goes silent. Again, you might think, this is not the end of the world. It is not the worst night’s sleep many children will get, neurotypical and autistic alike.

For the most part, that is true. He gets a little less sleep than he requires. He wakes up on eight hours of sleep with slightly fewer spoons that he might have had on ten or eleven. In the afternoons, he is more prone to meltdowns, and stress, because he gets very tired. But all things told, we cope.

Which is why, at first, I was reluctant to give him Melatonin. The first few nights I backtracked, wavered on whether it was a good idea after all.

But again, there is more to the story.

My boy suffers from extreme anxiety. The sources and manifestations of his fears are varied. He is terrified of death. He mentions it on most days. Between the hours of 7.40 pm and 10.30 pm, he calls me to tell me he cannot stop thinking about it most nights.

He is terrified of mistakes, finds inconsistency and difference unbearable. He calls me to his room to move books by centimetres, to close cupboard doors that are open a fraction, to move toys that look like they are in the wrong spot  – but I cannot tell the difference. Sometimes, if I cannot get the object in exactly the right position, he becomes inconsolable.

He cannot cope with the idea that he has done anything “bad”. During the worst times, he will call me over and over again in the evenings. He tells me that he moved something he should have left, or he called his sister annoying, or he watched a video that had bad words, or he forgot to wash his face. He tells me that is he is worried that he cannot stop these things, that he must be bad. He lists the catalogue of every tiny thing he has done that day that could be considered wrong in any way. Even though we tell him, over and over, that they are just small things, that he is good, that he is brilliant, still, the thoughts come.

He is worried about not sleeping. He is worried about sleeping. He is worried about everything he did during the day. He is worried about every object in his room. He is worried about every moment of his life. He is worried that those moments must come to an end.

And the distress is so overwhelming, so agonising, that the two hours or so before he sleeps become worse than nightmares.

There are times when these worries are worse than others. There are patches when he calls me every few minutes and cannot sleep until 11 pm approaches. And there are times when his worries are reduced, when he calls only a few times, when he falls asleep nearer 9 and is more peaceful.

But the quiet, lonely space of his bedroom always triggers these thoughts. The time and silence make his mind agitated. Even though we do not miss sleep, his father and I, the worry brings a different kind of exhaustion – for him, and for us.

There have been so many evenings when, despite my own anxiety, I have wished desperately that I could take his from him, that I could lie awake, terrified in his place. I have wished that I could give him peace, so, so many times.

The tiny doses of Melatonin are in our medicine cabinet, prescribed by our Paediatrician. It should settle him earlier, should mean he sleeps longer.

It should mean he has less time awake, terrified that all of us must die – without exception.

Have I not wished a million times that I could take away those hours of worry?

We gave him the Melatonin. Already, I can see he is much sleepier when bedtime comes. It has been just a few weeks, but the time when the monitor falls silent is getting earlier and earlier.

Last night, when I left him, he did not call me back, not even once. He fell asleep before he had the chance.

And so my muddled thoughts about Melatonin are not muddled any more.

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11 thoughts on “A Melatonin Muddle

  1. For us Tyrus would not fall asleep until 3am, and we were up for the school run at 7am, so it was a no brainer when the paediatrician finally offered it, but during that time he was never upset or anxious, he just couldn’t drop off to sleep no matter what we tried. I think you have done exactly the right thing, allowing him to settle peacefully without that worry will definitely set him up for calmer events the next day hopefully.

  2. My youngest son (10)suffers with anxiety and night terrors. He is neurotypical but his sister (17) is on the autism spectrum.

    I have been to our GP 3 times in 2 years as no improvement (unless he sleeps in my bed with me) and each time no referral to paediatrician or medication is offered. All I get is a sympathetic ear and ‘the look’wgich equates to being too soft, babying him, not being disciplined and that it’s all my fault. Not helpful!

    It sound as if you are reaching a turning point for your son which must be such a relief. Long may it continue 😊

    1. I am sorry to hear that. I would go to a different GP! It took quite a bit of work for us to get seen by a paed about mental health issues as at first they refused, saying it was not their area. Thank you.

  3. I am so happy its helping him. Our mixed up world has enough worries for the adults, little ones shouldn’t have worries that keep them from rest. I hope with more rest his anxiety decreases too.

    My Ben has had sleep trouble since birth. We started with melatonin and it helped for a long time. Unfortunately, his sleep problems became worse and he now at age 11 takes 3 different medications and averages about 6 hours a night.

    I love the guardian bears.❤

  4. I’m so happy that melatonin worked for you. We’ve tried it many times and it hasn’t worked for us. I now have two teens who’s sleep is all over the place. One thing I have noticed is that we just about get them into a pattern and then with every full moon it falls apart again. Just wondering if you have noticed anything similar. One of mine is extremely anxious, he’s diagnosed with anxiety, PDA and OCD along with his ASD diagnosis. We are about to try hypnotherapy as a friends son has just had it, again an adult and it has transformed his life. Obviously still autistic but now less anxious and holding down a job.

  5. I have heard lots of positives and not so positives about melatonin. I think you’ve got to make the decision that works for you and your family. My son is same about mistakes. Bed time is when everything tumbles out of him about issues at school, mass apologise for things T home etc it’s tough x.

  6. This sounds very similar to my son. Sleep was a nightmare when he was small but now we have a good routine. Having said that he too stays awake until 9/10/11 most nights. I have wondered about melatonin so this was really helpful. #spectrumsunday

  7. It obviously wasn’t a decision that you made lightly. We all worry when it comes to giving medicines to our children. I’m glad that this has worked out good for you all and I hope that you continue to have good night’s sleep.

  8. My little boy has been on melatonin for a couple of years now, hes scared of falling asleep so fights it any way he can. He has special needs, so it’s not easy explaining to him that it’s ok. Over the years consultants have told us he will be fine without it, hes older, try a break. Worst week of my life! I gave in after day 4 and gave him meds.

    Its not a miracle cure as you know, it still takes my son half hour to an hour sometimes to stay in bed and settle.

    We do what we do for a good nights sleep, so they get rest, we get rest. No one could ever understand the bedtime stress occurring when your child has anxiety. My daughter has grown up without meds and is very anxious about bedtime. Rarely goes to bed before we do and has been a bad sleep since birth! Midnight trips to tesco, mcdonalds breakfast at 6am. We did it all just to get her to sleep.

    You are doing a great job

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