Cracking up with 5 yo DDs sleep (or lack thereof)

[Endlessdark]

DD has always been a rubbish sleeper, stopped napping shortly after 1 and in general has bundles of energy. I have a 1yo dd also and they share a room.

have had some concerns about her RE ASD, however haven’t managed to successfully get her assessed despite going down 3 different avenues. First I contacted school who said they can’t help as she masks as school but gave me the name of the local authority to contact and said also go through GP. Tried local authority who said no they don’t take direct requests, went through GP who said wait 3 months and if no improvement they will send referral. Waited the three months with things getting worse, had an appointment with the GP who sent off referral in May. Received a letter last week saying the referral was rejected because not enough info was supplied and told me to go through the school. So yep, round and round in circles. DH not fully supportive of an assessment as he thinks she’s just a quirky kid, however doesn’t get the brunt of her behaviour at all and he travels for work a lot. Despite this I contacted a private paed who specialises in ASD for an assessment, just need to find the funds for that.

basically dd will not sleep at night. It takes hours of fighting before she will go down. She’s often awake in the middle of the night anywhere between 20 minutes to 2-3 hours. Wakes up early too. I keep her very active, playground every day after school as well as playing at home. She eats a select few foods but a lot of them if that makes sense so she isn’t hungry! I’m on my fucking knees, this week has been awful. She wakes her sister up multiple times a night, I’m getting barely any sleep. I lost it tonight and demanded DH come home because I can’t cope with the 4 hours of endless fighting. I get zero time alone, house is a shithole all the time because as soon as I clean she is wrecking again. please has anyone got any advice??? As I wrote this she has gotten out of bed again. I can barely keep my eyes open I’m so tired.

Sorry for the word vomit, I’m just so over this now I can’t cope and with no support out there without having the funds, what can I do?

My son is nearly 3 he is the same goes bed after 9pm but will only sleep in my bed as soon as i get up his awake 😩...

Would she sleep in your bed with you?

I’m sorry you are going through this. It sounds so tough.

I’d go back to school and request another meeting. Can you go to the head teacher?

Do you get a break when DH is home?

Buy a trampoline. Take her swimming. Teacher to ride a bike. Find a dry ski slope. Put a scoop of Epsom salts in her bath. Feed her an extra milky cereal in the evening.

Hey @Endlessdark I am with you and in the same boat!

My DD is also 5 (y1) and I have become steadily greyer over the past year!! I do not have an answer (I wish I did) but I can share with you what has helped for us and my particular DD!! Depending on your DD, hopefully, she may find some of this useful.

Note the helped!

We have a rewards board, it's a white board & magnetic rewards chart basically. Each individual step of the day is broken down and on it. (Stay in bed until the sun, breakfast, wash, hair etc) this has helped.

I made a feelings board and it's on our wall.

I have an Inflatable wiggle seat for dinner etc if she needs to sit at the table.

In terms of not coping without support. I am with you 100%. I am so frustrated with our utterly screwed system I could scream!! Despite having been "flagged" at 2.5 years old my daughter is still not officially on the waiting list. In my area, they are currently dealing with referrals that were made in MAR 2018. My DD'S Referral has still not been submitted, despite all involved saying she desperately needs a referral.

I too tried the GP and was told it was the schools problem . Her school are very good with her and try so very hard but they're also up against it. She's nearly finished y1 and is already nearly a full year behind....it's soul destroying and I worry so much for her.

In terms of sleep, DD has always been ok-ish in terms of getting her to go to sleep but keeping her asleep is another story!! Her sleep quality seems to be poor too however this could be because she wakes up and we don't necessarily know.

I have more, some successful and some not, please PM me if you like as I too would be grateful to talk to someone in the same boat!

My niece who is also five cab be like this she is like a Duracell bunny lol keeps going and going

You need to split them up. Put the baby in with you or convert another room, but it's just not practical to have a 5 year old who struggles to sleep in with a one year old.

After that can you focus on getting the five year old to entertain herself for a period before sleep and in the morning. Will she play quietly/draw/watch a movie? Can you make her bedroom safe and cosy so she can be left in there to chill even if she isn't sleeping. Try a groclock. Use a reward chart if needed to keep her quiet and in her room in the evening and early morning.

I have every sympathy with you @Endlessdark. My DD was just like this and has been much better since taking Melatonin. I don't think it helps with waking in the night or early riding though.

I don't know how much you earn but Caudwell Children offer part funded assessments for households under £45k. Could you ask the school SENCO to refer her?

I also feel your pain OP - DTS1 is 7 and I'm still waiting for his ADHD referral! School didn't action it during lockdown (as of course they didn't see him much), the SENCo left, the paperwork took ages etc etc... again, terrible sleeper since day 1, often absolutely exhausted but can't get to sleep, wakes himself up too early and so on...

A few things that have helped:

• A weighted blanket - he finds it reassuring
• Listening to an audio book in bed whilst he looks at his football cards or similar before lights out - he's not a great reader but enjoys those
• White noise after lights out - otherwise he says the silence is 'too loud'
• Co-sleeping, at least to get him to sleep - not ideal but he likes the reassurance of someone being next to him
• Lots of exercise - otherwise he will bounce off the walls for hours
• Enough food - he doesn't eat a vast amount (and is a very picky eater) but plenty of chicken bloody nuggets yet again protein does help
• Gro clock when he was younger. "Is the sun up yet? No? Well GO BACK TO BED THEN"
• Reward scheme - depending on your DD's idea of a treat/ understanding of how these things work. I think firstly I offered him a magazine if he stayed in bed past a certain time for 5 days in a row. At bedtime, we had a box of 20 plastic counters and every time he was a pain I took a counter away - I said if there were any left by the time he went to sleep, he could choose a Lego figure from a big box the next morning and keep it for his collection - then after he'd managed that, I took away a counter so he only got 19 chances, and so on.
• And finally, no screens etc if he did get up, otherwise he would only have started getting up even earlier to watch CBeebies!!

Good luck

Goodness thanks so much for all the responses! I feel a little less alone. I don’t get a break ever really, DH not the most hands on. It’s just honestly soul destroying I feel like I haven’t slept for 5 years. We did cosleep up until shortly after she turned 4 and tbh whenever DH is away for work she is in with me but it’s still a struggle. I have to sit and watch her and keep telling her to close her eyes otherwise she just cannot switch off. She also doesn’t respond whatsoever to threats or rewards, she literally gives no shots. She knows I will take her to the playground/ swimming etc because it’s my only chance of getting her to sleep. We have no space for a trampoline unfortunately as no garden but we have like indoor climbing frames/slides/ possum play couch etc so she is constantly got physical activities to do. She won’t really play independently at all with like quieter things (occasionally will draw nicely but it’s the exact same picture over and over (… is that normal?!) and so doesn’t last very long). She has both a yoto portable player with tons of card’s including meditation etc and a tonie box but she won’t sit and listen. I bought the yoto with the hope she would lay in bed and listen to stories on the headphones but nope 😢

food wise she only eats a select few things but a huge amount of them, I don’t often give sweets/chocolate because I’m just scared of anything that could further impact sleep. The private paed I spoke to told me to go to the GP and ask for a prescription for melatonin but I was under the impression she needed a proper diagnosis first? Can GPs prescribe this? Also I read the side effects and that scared me, I hate the thought of her having headaches etc just so I can get a bit of extra sleep.

i will definitely get back on the school on Monday and see about setting up a diary. She is very smart and masks very well at school but often plays alone and is very anxious (almost finishing reception and she still cries for me) so I’m not sure why they don’t believe me. I know they system is seriously strapped at the moment, some of the waiting times you all have had are horrendous! Do you think it’s best to just go private? The consultant told me it would be £800 for a consultation and initial diagnosis but I imagine it would quite quickly add up. I’d have to sell some things to fund it but if it gave her a bit of extra support I’d do it in a heartbeat!

Also I will definitely try the weighted blanket thing, that’s one thing I haven’t tried! I’m wondering if I give up our bedroom and we can get a sofa bed. We will probably only be in this small flat for another 2 years so definitely doable.

It's terrible OP and I do feel for you. I felt murderous when DTS1 was getting by on maybe 6 hours a night (in chunks of a couple of hours) and other mums would say "oh gosh, little Tinkerbell goes to sleep by 6pm and isn't up till 8am, sometimes I worry that she's having TOO MUCH sleep!"

Much as DTS1 needs exercise, he actually sleeps better when he's done some thinking with it - so a new playground/ different activities etc - would anything like that be an option? Or joining something like Squirrels, if you have a group nearby?

I don't think the GP will prescribe without the Paediatrician prescribing it first. Our DD is on the Pathway but because her sleep was chronic the Community Paediatrician prescribed it then said that the GP could supervise which is working well so far and no side affects, well apart from she's much more pleasant to be around.

Was the Caudwell Children link of any use?

We had this (just the one child though). I massively empathise.

I think you're going to have to save up for the private assessment, although I think it's also possible to use NHS Choose and Book to get one if you're prepared to travel.

But it sounds like you would benefit from melatonin and a paediatrician needs to prescribe that.

Our DD was diagnosed at 7 and the ADHD was obvious, looking back, from about 3.

The melatonin has helped us a lot.

We'd done absolutely everything else you can imagine to try to fix the sleep and tbh it nearly broke us up.

And until you get Melatonin ask if you can give Piriton.

Get an indoor trampoline with a handle. You honestly need to tire her out. You need to do that every day. Once you’ve got her sleeping deeply it will all get easier. Can you not nap when she’s at school? Melatonin might help but it can cause terrible nightmares and I’d try everything else first.

I going through very similar with my 4yo, also suspect adhd.

I think sometimes he's over stimulated/ over tired and this contributes to him not being able to switch off. So trying to tire them out has the opposite fact. Sometimes it helps to have a quieter kind of day. But not always

So basically you are doing your very best and that's all you can do. Hugs

P.S you can buy melatonin gummies online without prescription apparently.

I've tried these (non melatonin) and they did help but he refuses to take them

5HTP Bedtime Gummies x 60 | High Stength100mg Natural Melatonin Sources | Griffonia Extract Sleep Gummies | Vegan | Gluten-Free | Chewable Melatonin Alternative | Passion Fruit Flavour | amzn.eu/d/hPsA2Uc

Hi OP your daughter sounds exactly like my godson. Never slept a day until 6 months ago and he's 11.he has recent diagnosis of ADHD. Took a while he still needs an official diagnosis from CAHMS but the school and doctor have sent this report. My friend called CAHMS couple months ago about hiss sleeping and they prescribed melatonin. What an different he falls asleep before 9-7 later at weekends. It's been a game changer for my friend. She was sleep deprived since the day he was born. Xx

My son (also autistic) had melatonin. All the well meaning advice of doing the super nanny back to bed and running him in the park and feeding him xyz before bed was useless and frustrating. I know how to get a child into a sleep routine - I have three other kids! With this one, nothing worked. The melatonin worked. He is still not a great sleeper in the sense that he wakes up at about 6, but now he is more mature he knows he must stay in his room doing something quiet and not wake anybody up. And he does sleep at least 7-8 hours a night now. If felt like torture for a while there though. I’d prioritise the melatonin. And be really honest with the GP. I found that when I was beating round the bush or ‘oh he struggles with x’ they didn’t take me seriously, but when I was flat out saying ‘I can’t cope with his behaviours, we can’t have a normal life with xyz challenges, I need help’ they were more amenable to listening.

Another thought OP, if you have any local SEN charities, they would be really helpful at providing more info about a diagnosis - you should be able to find them all through the 'disability provision' section of your local council's website (disclaimer: I'm in England, not sure if it's the same in other countries!). We have a couple of brilliant local ones who will help even if you just suspect a diagnosis, I use their webinars a lot. They run a sleep-specific workshop but so far not at a time I've been able to join, annoyingly!

ADDitude mag has lots of free downloads including one about sleep - and there's a sleep guide at autism.org.uk too which might be helpful, although it does say how important sleep is for adults too. TELL ME SOMETHING I DON'T KNOW!!

Sorry to hear you're having such a rough time. Having such poor quality sleep is the worst!
My DD has ASD and has recently been prescribed melatonin. Total game changer. Maybe that would work for you.

Sounds like my son. Weighted blanket saved our sanity here.

Not just the weighted blanket, but a self referral to Occupational Therapy to really understand his sensory needs. Keeping his sensory needs topped up (big sensory seeker) results in a happier, calmer, better sleeping child all round.

Other stuff that helps here... kots of physical activity, bath before bed every night (sensory top up again), double bed (more space to fidget and squirm about, plus space to cosleep when he wakes in the night, goes back to sleep much quicker that way), white noise.

I'm lying awake and he's still asleep, having slept by himself, in his own bed all night for about the 5th time in his life. He's almost 5.

No real tips only solidarity… sleepwalking my way into today after 3 hours sleep. My 4yo is often up for 3+ hours and just so awake. She has an autism diagnosis a few months ago. Sometimes a later bedtime (10/11) helps but not always - and if we are going to robbed of sleep I’d at least like an evening to unwind! We are still figuring out what makes a different. The day before (very active, not too active etc etc) doesn’t seem to match up with any clear connection. We tried melatonin but it made the night wakings worse for us. We’ve been taught a massage to do by the OT at her SEN school and it does seem to help get her ready for sleep (mostly legs and feet, you can see her physically calming through it - probably there’s examples online) but hasn’t been a magic wand for sleeping through

its such a depressing way to live!