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
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