WIBU to ask him to contribute to this?

[ECJW93]

DD is 7 and has autism, to quite a moderate extent. For the last few months, she has had awful problems with sleeping, waking multiple times in the night and then refusing or being unable to go back to sleep, sometimes for another 24 hours or so. Before the summer holidays, it had gotten to the point where she was missing school quite regularly because she was so tired (she goes to an SEN school so they are more understanding about this and allow her the time off).

We live in a part of the UK where melatonin prescriptions for children have stopped due to funding issues, so I buy them from a reputable website instead, but they are the gummies and instant release rather than the long release tablets, therefore they help her go to sleep but not keep her asleep. We have been under CAMHS for a while now, tried every sleep hygiene tip in the book and nothing has worked, if anything the problem is just getting worse. We have tried without any luck whatsoever to get a community paediatrician for her to be able to try different medication options, but I genuinely would have had more luck getting blood out of a stone.

I’ve now found a private autism consultant for children, who can offer different medication options, but at a price. We’re probably looking at £300 for the consultation and a regular cost of £150-200 per month for the medication, minimum. Now onto my AIBU - DD’s dad doesn’t see her due to legal restrictions but still has a legal responsibility to pay for her, and does so, when he can be bothered to actually stay in a job long enough. I know that he can come up with the money when he needs to as his family are very generous and just keep him financially whilst he sits on his backside all day doing nothing.

I could probably afford it by myself at a stretch, and making some sacrifices every month, but I already pay for absolutely everything for DD as a single parent and not being able to work FT due to my own health issues, but I would make those sacrifices because of how bad this sleeping issue is for DD, it’s just becoming increasingly frustrating paying for everything myself all of the time. WIBU to ask him to see if he can contribute towards these medical costs for DD?

Well, it's not unreasonable to ask for a contribution, but I think you have other options that may get you to a better solution and without it costing anyone because the actual issue is your DD's sleep rather than your ex's contributions to maintenance, right?

If you are under CAMHS then they can prescribe. Ask for a 'medication review' with one of their pscyhiatrists and be specific about why it is needed. Then, explore with them whether promethezaine may be a better option for your little one rather than melatonin; we found that melatonin didn't work for either of our twins, but promethezaine has - they still find sleep tricky, so we need to provide a lot of regulation and connection before bed but, once asleep, they (mostly) sleep through now.

If they will not agree to a review, then put in a complaint to PALS about being left for so long without a review and with sleep disturbances that are affecting school attendance and impacting upon carer wellbeing.

As an alternative, you could request a review of your DD's EHCP and request that CAMHS attend this and use this an opportunity to look at DD's needs around sleep and the impact on her attendance at school, impact on wider care needs, etc. While school is being supportive, I would make the most of this and get them to amplify your voice that sleep is, at present, an unmet need.

I would be very, very cautious about mentioning to school, GP, or CAMHS that you've bought gummies off the internet as this can trigger a safeguarding concern - melatonin is not licensed for over-the-counter use in the UK for children.

I would also recommend looking for some online workshops about neurodivergence and sleep to better understand why sleep can be really hard for differently wired brains. Neurotypical sleep hygiene ideas are rarely helpful, but things like Occupational Therapy, natural tryptophans in the diet, increased connection and co-regulation make a big difference with and without medication.

I know you've tried everything but just in case have you tried phenergan or magnesium

From experience - the lack of sleep aspect of a child with ASD was a killer - for me and for my son.

CAMHS can prescribe Promethazine (Phenergan). This got my son to sleep but didn't keep him asleep (frequent night wakings of 1-2 hrs at a time). Round here, prescriptions for Melatonin were stopped when a young person reached 18 (because as we all know, ASD is magically fixed the day after their 18th birthday) so I found Melatonin (slow release) on the American Amazon site. Never had a problem having it sent here although shipping sometimes cost more than the tablets.

Completely agree with PP, neurotypical sleep routines just don't work for ND young people, I got sick to the back teeth of "professionals" opinion on my parenting because my teenager just would not sleep. It was only when he was admitted to a teenage mental health unit that they realised this kid could stay awake and alert for 72 hours at a time (by that point he'd be completely off his trolley).
He's 22 (today actually) and still struggles massively with sleep but he doesn't want to be medicated and doesn't need supervision at 3am so I just let him take responsibility for his own sleep hygiene now.

I'd be really hesitant to ask her father to pay. If he's already flakey with maintenance you could be left footing the bill.

It’s perfectly reasonable to ask just as it’s perfectly reasonable for him to refuse. I would probably expect him to refuse regardless and ensure you could afford it by yourself moving forward.

Can your DD’s school refer her to someone for additional support or do you have anyone else who provides help in your area of the country like a family support worker or similar who can ensure a referral is sent through to someone who can and will help?

I would also go to your GP and beg for another refer to paeds for some help. There are some other medical options that can be used. One of my autistic children has amitriptyline in a low dose.

I’m guessing ex pays the bare minimum he can get away with, if yes, it’s perfectly reasonable that he should pay to enable his child and her primary carer to sleep at night.

You should definitely ask. Tell him about the toll the lack of sleep is taking from dd.

I would say that in my personal experience, and in the experience of the many people I know with autistic kids, the prescribed Melatonin is exactly the same (sends them off to sleep, doesn't keep them asleep). For some reason (which I don't fully understand) Melatonin doesn't seem to work when given at the point of one of the middle of the night wake ups either.

One of my DC has a very similar sleep pattern to your DD and it's painful but honestly no Melatonin or sleep strategy has ever worked.

What medication is this sleep consultant actually suggesting?

You can buy time release melatonin from biovea.com. I can’t imagine it will prompt a safeguarding concern as a gp friend asked me where I got mine from so he could recommend it to a patient for their child.

Theres little more dangerous than a severely sleep deprived parent 🤷‍♀️

I buy slow release melatonin for an adult on pipingrock.com. It is relatively inexpensive.