Published on 12, July, 2020
Hi,
I'm not sure where I'm going with this but l would like people opinions. Please be kind.
My daughter has just turned 6. Since l can remember we have always had issues getting her to sleep, she struggles to relax and switch off and becomes quite restless and agitated. As a result she sees bedtime as a negative thing. She is reluctant to sleep alone and wakes every night at least 3 times. On occasions she refuses to go back to bed resulting in meltdowns. Due to our own lack of sleep and mental health we do allow her to sleep in our room but not in our bed. She always starts off in her bed. We try our hardest to stick to a strict routine. Every night is a battle to get her to bed, some evenings go well some don't. This has been going on for years.
Her social skill are good as far as I'm aware and her speech is good. She struggles to play independently at home and always has to be within sight of us. She's quite demanding. For example she wouldn't go in the garden without us or play upstairs or go to the toilet alone. I've just had to go to the toilet with her. Our garden is safe with no other access other than our front door.
She struggles to follow instructions at home e.g getting dressed. She can get dressed but doesn't. Not sure if this is just her being difficult/lazy.
As far as l know she's doing ok at school, perhaps falling a bit behind with her writing. She's been at school since June.
The other thing we really struggle with is the meltdowns. She suffered bad as a toddler to the point l went to see HV as l was struggling to cope. I was told she's quite intelligent and doesn't know how to channel it. I'm a childcare practitioner so I'm quite used to them. We still have them but less frequently but more aggressive. She will roll around on the floor, scream so loud it hurts your ears and she's quite aggressive and will throw and lash out at me. She bites her older sister. These can carry on for 20-30 minutes. We try to ignore her as the more we interact the worse she gets. On the odd occasion she's wet herself. She doesn't have these at school apart from the couple of occasions she refused to go to school. These are usually caused by not getting her own way and quite often food related.
Food....She's a good eater, likes to snack but isn't too fussy. Always hungry.
No sensory issues with clothing etc.
She does really worry about being alone. In the past she's talked about us dying and she'll be left alone when we've gone.
We've spoken to the schools support worker, nursing team and she's seen a counsellor. As soon as we mention there has been some improvement they think job done! It's so up and down its never done. School support worker recommended this site but didn't say why. The nursing team said we've to do a diary and if the meltdowns don't improve we may be able to get her assessed through school or our GP.
This all may seem like nothing to some people's struggles but it has affected our family life and my mental health greatly. I think it also affects my relationship with her and we've struggled to get support.
Just wondering what people's thoughts are?
Many thanks
I'm not an expert, but I'm also a parent. My advice is to address a neurologist. Some children can have hyperactivity during the day (most parents find it normal) and can't relax. Also, they find difficult to concentrate and sit long enough to learn. Also, it is possible to try relaxing massages before bed. They work good for my son.
Hi, your struggles are real & you are not alone! I know you posted this a couple months ago now bit I wanted to reply because your daughter sounds like a mix of my 2 girls! One 13 diagnosed with Asperger's the other 5 undiagnosed but I'm pretty sure she has asd also. Both my girls have had & continue to have problems with sleep. My eldest had sleep therapy at 2 - 2 1/2 that didn't work, I had to stay with her until she fell asleep but I started moving further away from the bed every couple of nights, only by a couple of inches until I was in the hall & by then she would go to sleep by herself pretty quickly. That wasn't until she was around 5 though, it took months to get out the room but I did it...it was exhausting for us both. This time round with my 5yo I haven't even bothered trying, she needs me to lay with her to fall asleep & I do because thats what she needs to feel safe. The nights I've tried not to she's had a meltdown & kept everyone awake. She has nightmares a few nights a week. She gets in my bed almost every night & I'm fine with that because at least we all get to sleep! Anxiety is worse when you're tired so sleep is extra important when anxiety is an issue. Her anxiety is awful & she is scared of absolutely everything...red lights being one of the weirdest scary things!
Do what works for you as a family not what you think you "should do" is my one advice on that one. If she NEEDS to sleep in with you then let her, she'll grow out of it one day & then you'll get your bed back! I'd rather have sleep than stress & meltdowns, at least that helps manage the other issues!
You say she has no sensory issues, just because she doesn't seem to have an aversion to certain clothing doesn't mean there aren't sensory issues going on affecting her. Try calming the environment down, turn the TV off, turn the radio off, all the different noises in a household can be very stressful without you realising. Noise is one sensory issue that causes meltdowns in all 3 of my children & I myself become incapable of functioning & can get very moody. Try changing the lightbulbs to a lower wattage or use lamps in the evenings so the lighting is softer. Is her bedding cotton? Check its not scratchy. She may be irritated by the bedding but not be able to verbalise it. Do you use plug ins or smelly candles? Does she ever mention the smell? Is she better when she's wearing socks/not wearing socks? Take 5 minutes yourself to stop & pay real attention to your surroundings, it may be noisier/brighter/smellier or more visually overstimulating than you think!
You say she doesn't have any problems socially, to the outside world my 13yo looked like that when she was younger but looking back with the knowledge I have now there were issues with social interaction. Yes she played with other children sometimes but always on her terms. She was very bossy & always taking over & if the other children wouldn't play what she wanted she'd have a strop & walk off. My 5yo will do the same, she'll try to change the game or force others to do what she wants. She also doesn't play with toys properly, she looks to everyone else like she's got a really good imagination playing with her dolls but she's actually acting out what she's watched on YouTube of other kids playing with their dolls! It's not what they play it's how they play.
I would really look at her behaviours in more depth if you haven't already & see if there are underlying causes for the meltdowns. If you make some changes to the sensory input from her surroundings & that doesn't change, look at routine. Make sure everything is predictable, she may be reacting to minor changes you haven't even thought of like a visitor randomly turning up, driving a different way home or fish on a Wednesday..."but we only have fish on Fridays!" the possibilities are endless & often (in my house anyway) so random & extreme that it sounds made up! My son once used to have terrible meltdowns & after about 3 months of horrendous meltdowns in the mornings on a sunday I realised he didn't like my perfume! He was unable to tell me that though as he didn't realise it was such an issue.
My 5yo has atleast 2 a day, sometimes they're done in 30 minutes, a particularly bad one can last 3 hours & result in a trashed house, missing hair from her pulling it out, almost broken voicebox from screaming at the top of her lungs & her being in pain from hitting & kicking the floor & thrashing around or biting & pinching herself. I've managed to figure out most of what's causing them but sometimes even though I know it's going to happen I literally cannot avoid it so just have to brace myself & get her through it as best I can. A lot of the times her meltdowns are over me not doing what she wants when she wants like taking her upstairs because she won't go by herself, taking her to the toilet, sitting with her while she watches YouTube...she doesn't do ANYTHING by herself! I'm stood cooking dinner...I literally can't leave a pan on the stove just to walk upstairs to spend x amount of time looking for a particular hair clip when dinner is already an hour late because I had to spend over an hour sat on the bathroom floor voicing 75 lol dolls going to the toilet & brushing their non existent teeth! Sometimes they're sensory, sometimes it's because something is different & sometimes it's unknown to me why. Sometimes I think she's just doing it to get her own way...who knows. It's like she's stuck as a toddler. I haven't figured out completely how to handle it yet. They're getting less frequent & not lasting as long but they are more aggressive & she is now showing aggression towards others rather than just herself. She screams & screams so loud & for so long that she hurts her throat & everyone else's ears! I'm surprised she's not torn her vocal chords or burst her own eardrums!
Also neither of my girls displayed many if any of the common symptoms at school. My 13yo wasn't diagnosed until she was 11 even though I thought she was since she was around 3, it took me 4 years to convince people to take me seriously & a further 3 on the waiting list. I'm now having the same problem with my youngest because she behaves so "normal" at school they think she can't possibly have Autism! Absolute bs to think just because you can hold a conversation with another human you can't be Autistic!
Your daughter may not have Autism but thought I'd share some similarities as it may give you more insight into Autism. Also be aware that girls can present very differently to boys so if you are going to read up on it try to read about girls with ASD to get a more accurate description.
Anyway, sorry my reply was so long...one day I'll learn how to be direct & to the point without going into detail about everything...or maybe I won't haha
I hope you get some answers & some support with your daughter. Feel free to add as a friend to private message me if you want to chat
Hi there, I am in a similar sitation as you. My daughter was referred to paediatrics at the age of 2, and has been under them since. She was only accepted by CAMHS in November and has had her initial assessment but we are now waiting for an assessment date. Since lockdowns first began, she has drastically gone downhill, and very similar issues that you are having. She has regressed at bedtimes, and after two years of her self settling we are now back at what we had to do with her as a toddler, staying in the room, she has meltdowns extreme all hours of the night, even after a few nights sleeping in with us she is now doing it in our room when we are with her. We let her in with us purely so that her brother can get sleep (they share a room), and so that she can calm with us, its survival for us too as that’s the only chance we get to sleep, and even then it’s only 3 hours a night if that. She has severe anxiety, and is frightened of anything and everything, CAMHS turned her down three times last year, and she masked at school so was never problems there, however now there is battles with the build up to school, and also when she gets home she is having meltdowns. After spending all day there that’s understandable, but the amount of sleep she is getting which is very little i cannot understand where she gets her energy from, we are exhausted mentally and physically. Doctors tried her on melatonin, however she will not take it, and on the off chance she does, she sleeps for around 3 hours and then wakes as if shes had a full nights sleep. She was very early speaking, communication is fine however when in a meltdown she has selective mutism. She is very strict with routine and the slightest change can cause chaos, she relies on sensory items but with the nighttime thing its definately worse, so you are not alone! She has also become more physically challenging, and tries to self harm, and also lash out at us at times which is something we have never seen before. I share the Same frustrations as you, as soon as there’s the smallest improvement with something they assume that all is fine and hold back support. My daughter is six, seven in September, and i am also bipolar so it can be really really difficult to deal with. We feel so helpless, and hate not knowing how to manage it sometimes, a lot to people i talk to have much older children so i cannot really relate. She often talks about not wanting to grow up or be an adult, as she doesn’t want to be on her own and has mentioned about dying a few times before. We are currently waiting for a property to become available so that her brother does not have to share bedroom and can sleep without being disturbed, but it feels as though everything just takes so much time. I hope you get support with your daughter soon xxx
Hi @NAS71653.
Our daughter has always struggled to sleep. She would wake us every time she woke until she was about 8. She’s better now after lots of reassurance, but doesn’t go to bed until after 10, so we’re still exhausted.
She does very well in school and is a model pupil. She has a small group of friends. However, it is clear she is very insecure in these friendships and often worries about fitting in. Sometimes she feels these friends are teasing her. It’s difficult knowing whether these are normal difficulties a lot of prepubescent girls go through, or more about the way her behaving differently, socially.
She is exhausted after a day at school, behaving well, and tends to shout at me and hit me on the walk home. On the other hand, she does not want me out of her sight. She has never played alone, but wants me alongside her or watching her (she loves to dance, draw and sing).
She has violent outbursts at home when she just cannot control her emotions. This results in her throwing things, hitting furniture, attacking me or her brother and occasionally banging her head against the wall. These outbursts only happen at home.
She recently read two brilliant books written by an autistic girl, Libby Scott. She immediately identified with the main character, Tally, and started asking me if I think she is autistic. This is the first time I had seriously considered this, but it seems quite a likely explanation for her behaviour.
A very long answer to your question, but rest assured, you are not alone and you are not imagining things! I would suggest keeping a diary, so you have some evidence if you go down the assessment route. Even try to get video of your daughter, if she will tolerate it (My daughter has broken two cameras as a result of me trying to do this).
Good luck!
Thanks for your reply. We are not sure if she's just strong willed or if there is an underlining issue. We feel we have to think of how to deal with her to prevent meltdowns and sleep issues. It's a constant battle, some days are good some aren't. Feel like I'm making it up though as people don't see what we see. She never gets tired! Austism has such a wide range of symptoms and l don't know enough about it. I always thought it affected their social skills, speech, meeting milestones etc but she's ok in these areas.
If you don't mind me asking what are your struggles?
This is so similar to us! Our daughter is now ten. Same mixed picture as yours, but same pathological fear of being alone and she particularly wants me with her whenever we're at home. We had not considered autism until very recently. Now we're thinking a diagnosis before she starts secondary school might be very beneficial. She herself thinks she may be autistic and is positive about being assessed. Because of the mixed picture and the fact she is a high achiever at school with no behavioural issues (I suspect she is masking very well), I am concerned we will just be regarded as anxious parents. Are we?!!
It's probably worth putting your thread from Introductions to Parents and Carers as you may get this seen more. Have they talked about when they are going to refer your daughter - because to me it sounds like you need to get some more help right now.
I don't know what the waiting times are like for NHS Neurodevelopment Assessments, but I can imagine with Covid they have got even longer.
Like NM I am an Autistic Adult and didn't get diagnosed in childhood, but I thought if I posted at least I could bump you post again.
She sounds anxious to go to bed, she can't be anywhere alone (in the garden, upstairs, bathroom, dressing up, she has to have others there to feel safe). She's scared of others dying and she will be left alone, which probably makes her feel vulnerable and afraid. She might not feel a sense of security on the inside, and wants others to protect her and watch over her.
A method my family taught me for going to bed when I was young, is to get two stuffed animals, and tell her that one of the stuffed animals is going to be a guard that protects her and watches out for her, and face that one away from the bed so that it can "guard" her. And the other stuffed animal is just there for her to cuddle with and feel safe, and if she's still feeling anxious she can hold onto it tightly. Hopefully she will feel a sense of security and be able to fall asleep.
I mean, it's not an uncommon thing for young children to have safety blankets and stuffed animals to give them a sense of safety and security. Hopefully your child learns some good coping methods so she can feel safe, and then she can start building confidence and doing things independently and on her own.
No
she has been diagnosed with autism, right ?
I think you use the more button
Sorry l can't figure out how to edit it?
I wouldn't belittle your struggles. Yes, some people will have it worse, but this is what you're going through and it's hard for you, and your daughter. There isn't a hierarchy to suffering.
Your situation sounds like what many parents go through. I'm an adult AS So haven't got experience of dealing with this I'm afraid.
I'd edit your subject header to reflect your posts content so that other parents will notice it and reply. And then add a comment here so that the post comes back to the top of the stack. I'd also browse old posts on this topic using the search function, eg searching for bedtime, meltdown, etc.