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Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To ask mother's of autistic toddlers to tell me I'm not a monster

54 replies

MonsterMum7 · 01/08/2023 20:22

He won't go to bed. He won't stop stimming. He is exhausted. I'm exhausted. I'm trying to get him to go to bed and then he kicks me. He laughs at me. He pulls my hair. He wants to lie on top of me and screeches in my ears. I just want to go to bed and for him to go to sleep too and get a good night. He needs it desperately. I need it desperately. I just don't like him at the moment and I feel awful for feeling like that. I'm annoyed at him but it isn't his fault and then I feel guilty. He's a baby boy with a condition he has no control over. I should be able to control how I feel but I'm so tired of these battles every night.

OP posts:
AlfietheSchnauzer · 01/08/2023 20:25

You're not a monster 🙏💜 It's the hardest thing in the world to have an autistic toddler, especially if you're on your own or doing the main care of them day after day.

Ask your doctor if they can liaise with the paediatrician to get some Melatonin prescribed. That's how my DD got some. Let me tell you, they are worth their weight in gold (although you do have to give them a 1 night break every 3/4 days as they build up a tolerance with those 3-4 days).
I tried one once and 💤

CopperSeahorses · 01/08/2023 20:26

I am not a mum of a child with autism but I do have a preschooler who doesn't sleep due to seizures and dystonia. You are not a monster and you are not alone in how you feel about the lack of sleep. Is he under a paediatrician?

AlfietheSchnauzer · 01/08/2023 20:27

*within those 3-4 days

Amitabha · 01/08/2023 20:28

You are not a monster. It's so hard. I agree with @AlfietheSchnauzer about the melatonin.

BorkityBork · 01/08/2023 20:30

I'm not a Mum of an autistic toddler, but also wanted to tell you that you're not a monster 💐 it must be so hard for both of you.

CFornot · 01/08/2023 20:32

No one can control how they feel. We learn techniques to deal with our feeling so we can behave in an inappropriate way but you can’t change your feelings.

EVERYONE has times when in the moment they don’t like their child for some reason or another.

You have it tougher than most. Maybe ask on the SEN board for coping strategies.

My oldest was a horrific sleeper but not the same experience as yours. Although we/gp are wondering if she has ASD but is very good at masking or if she is just a very anxious child.

YouCantBeSadHoldingACupcake · 01/08/2023 20:33

You are not a monster. It is unbelievably hard, physically and mentally exhausting, and honestly I'm a few years on (ds is 9) and I still don't know how to fucking cope with him on a bad day. Melatonin helps, if you can get it prescribed, at least then you can have a few hours when he sleeps.

hennaoj · 01/08/2023 20:35

Sour cherry juice is supposed to help them go to sleep, if you can get him to have it. Might be a good stop gap before you can get a prescription.

ClementWeatherToday · 01/08/2023 20:37

Our eldest isn't diagnosed autistic but is extremely high needs - except for sleep! You're not a monster, you're doing as well as could possibly be expected trying to cope with everything. You must be hugely disregulated yourself. Is there anyone who can give you a break for a bit? Is he safe to be left in his room and periodically checked on?

Nevermind31 · 01/08/2023 20:38

I don’t have a toddler anymore, and neither one of mine are autistic, but sometimes they just won’t go to sleep. They are tired, they are whiny, they need sleep, they keep getting up. It’s terrible. You are not on your own

Runningoncake · 01/08/2023 20:39

You are not a monster. I love my DS to bits, but regularly have a visceral hatred of him at times.

I don’t know if you’re looking for ideas or just need to verbalise your anger but, in case you haven’t come across them and want to try some things:

Melatonin
Black out blinds
Weighted blanket
Lumi sunset light/clock
Pre-bed massage

Eyesapple · 01/08/2023 20:40

Mine are older but I was just describing on another thread my Duracell bunny toddler with ASD. It is absolutely exhausting. We can all be unbelievable parents on decent sleep and breaks but relentless demands drain us all completely.

Spendonsend · 01/08/2023 20:42

I agree with melatonin.

Also a bit of OT support if you can get it somehow. It can help with sensory regulation so my son used to repeatedly thrown himself down in the bed for hours. He would stand and drop down, stand drop down, over and overm The OT said it was because his body had no sense of where it was in space and he felt like he was falling. They showed me some ways to help him settle.

Original poster
MonsterMum7 · 01/08/2023 20:46

Thank you all.

We have the pediatrician this month. I'm keeping a sleep diary to help support my needs for melatonin. It's frustrating. He used to sleep like a dream and then the clocks changed and well he hasn't gone to bed well since. He's falling asleep in the day which makes the nights unbearable. I was falling asleep in a meeting today. I couldn't even keep it under control. He is going to his dad's later this week so I'm excited for a night alone and then I feel guilty again. But I just want some time.

I'd be interested in the massage techniques @Runningoncake and I'm glad I'm not the only one who gets these intense feelings at times.

OP posts:
urghhh47 · 01/08/2023 20:47

Find what works for him. i had one (multiple autistic children here) that literally didn't sleep at all at night. She still doesn't and melatonin doesn't work for her. My advice is to stop trying for a bit and just find what works. For a couple of mine that's the complete opposite of what you're told should work!! But if he's getting that worked up you're fighting a losing battle - he can't possibly sleep if he's in meltdown!

Goldencup · 01/08/2023 20:47

AlfietheSchnauzer · 01/08/2023 20:25

You're not a monster 🙏💜 It's the hardest thing in the world to have an autistic toddler, especially if you're on your own or doing the main care of them day after day.

Ask your doctor if they can liaise with the paediatrician to get some Melatonin prescribed. That's how my DD got some. Let me tell you, they are worth their weight in gold (although you do have to give them a 1 night break every 3/4 days as they build up a tolerance with those 3-4 days).
I tried one once and 💤

This I would even suggest buying it online if they won’t prescribe it. I have been working with family’s like yours for 10 years, I have never seen a significant adverse reaction to melatonin. You have nothing to loose but your sanity.

bryceQ · 01/08/2023 20:49

You're not a monster I've been there. My son is very high needs. Getting melatonin was a game changer for us, that and having a really high stair gate on his door, he would eventually tire himself out jumping on mattress on the floor we removed every single thing from his room that wasn't soft.

It's really tough

raquelwelsh · 01/08/2023 20:50

Aaw you are not a monster. My child is now 12 but I remember the toddler days well and we didn't have his autism diagnosis yet at that stage.
I don't think it's that you dislike him, more that you dislike the effects of his behaviour at the moment. Which is entirely fair, you're being pushed to your limit and beyond, it is really hard work some days (some weeks, some months)
But I can promise you it will get better. You and him will learn together and you will be the most incredible team as you go through this. Give yourself a break, you're doing really well and your son is clearly loved very dearly for him to feel so safe in your company.
I know it doesn't make it any easier at all but it's true, you are doing your best and you're doing it well. Big cuddle OP.

Jl2014 · 01/08/2023 20:58

You’re not a monster. You’re in an incredible difficult situation and I bet doing a brilliant job. Don’t be so hard on yourself. No advice but I hope it gets easier for you.

Wentbacktobed · 01/08/2023 21:08

Contact the Cerebra Sleep Service - it’s free!

Runningoncake · 01/08/2023 21:12

MonsterMum7 · 01/08/2023 20:46

Thank you all.

We have the pediatrician this month. I'm keeping a sleep diary to help support my needs for melatonin. It's frustrating. He used to sleep like a dream and then the clocks changed and well he hasn't gone to bed well since. He's falling asleep in the day which makes the nights unbearable. I was falling asleep in a meeting today. I couldn't even keep it under control. He is going to his dad's later this week so I'm excited for a night alone and then I feel guilty again. But I just want some time.

I'd be interested in the massage techniques @Runningoncake and I'm glad I'm not the only one who gets these intense feelings at times.

I just get some almond oil and do repeated movements on his back. Sometimes he asks for his arms and legs to be done too. It helps regulate them as it provides deep pressure and helps them know where the various bits of their body are. I also sometimes do his face, although without oil. I read a book on massage decades ago and just base the movements a bit on that, a bit on baby massage and a bit on whatever DS asks for/says is good. Stick a towel underneath so the sheets don’t get oily then rub them down with it afterwards. On the best days DS can go from hyper to really floppy and chilled, but other times he can find it tickly and once he’s started laughing there’s no hope!

MargotMargot123 · 01/08/2023 21:17

I feel for you. My 5 year old autistic daughter has a sleep disorder, getting her to sleep is a major battle every single night. And then she's awake multiple times. It's my husband's turn tonight!

We're just waiting to hear if she can be prescribed Melatonin. Would a slightly later bedtime help? I've read for some children with autism their internal body clock are different to ours. Or that might a terrible suggestion...

Really hope you get somewhere with the paediatrian.

YakChewCrumbs · 01/08/2023 21:23

Following on from the massage suggestion, can I also recommend Special Yoga. Have a Google and see if there is a practitioner near you. The daughter of a friend of mine slept through for the first time after her first session. It's a lovely thing and suggested by the National Autistic Society.

SiouxsieSiouxStiletto · 01/08/2023 21:26

Melatonin
Black out blinds
Weighted blanket
Lumi sunset light/clock
Pre-bed massage

The other one that helped here was a light show with music but ultimately the only thing that really worked was the Melatonin.

The GP told us to try Piriton until we got the Melatonin and that helped.

Mariposista · 01/08/2023 21:27

No advice, only compassion. What an awful hand you have been dealt in the card game of parenting. Not a monster at all - in fact, you're a saint!