To ask the PA to stop letting my daughter fall asleep on the way home?

[justamumseekingadvice]

My daughter (6) goes on the school transport bus to school (only 8 miles away but takes around 40 minutes because of picking up the other children). I cannot drive her because I have vision problems that prevent me from driving, don’t have a partner and her dad isn’t currently involved, don’t have any local family and friends either.

Daughter has autism and she really struggles at bedtime, it can take up to 3 hours to get her to settle to sleep. She doesn’t seem tired during the day and normally does get around 10 hours a night, the problem is actually getting her to sleep in the first place but then she will sleep through until the morning.

The last couple of weeks she has been falling asleep on the school bus for around 20-30 minutes and then when it comes to bedtime she’s even more hyper and unsettled because she’s had an energy boosting nap on the way home, and honestly it’s just becoming hell - I’ve had a full on screaming breakdown tonight which I feel horrendously guilty for but it’s just so draining and exhausting having to sit with a child for hours and hours every night trying to get them to sleep - it means that I often fall asleep without dinner or a shower because it’s so late.

WIBU to ask the PA to try and keep her awake on the journey? I’m thinking to maybe send her iPad with her to play on the way home to keep her awake for the journey too?

When I lived in SW, my son’s consultant agreed he needed melatonin, but was not allowed to prescribe it. He told me to buy it online and he would recommend dose and oversee it. It was a life changer. (I had tried loads of other things first including sleep nurse)
When I moved to SE, consultant was allowed to prescribe and did initially and then I could get it through doctor.
Who diagnosed your child? I would start there. Good luck, it’s worth pursuing.

It's absolutely a reasonable adjustment to ask the PA to keep the child awake.

It wouldn't be a reasonable adjustment to expect an additional PA to be employed for the purpose of preventing a short nap. The Equality Act doesn't = getting anything and everything that may make life easier! (Speaking as a severely disabled person myself.)

Anyway, sounds like the PA should be well able to manage the task under the present arrangement, so it's really a theoretical point. Very glad that that's the case since there's every reason to think it will improve things for OP and her DD!

My ds was NT but I know that even 2 minutes of sleep in a car would set him up for the evening and he could party on until the small hours - aaagh. I also know that it is so, so difficult to prevent a child from falling asleep when they are dog tired and very, very determined to drop off. A parent can prod and shake, but not a person employed simply as an escort.

Agree that if it’s just a council person with turnover they may not be bothered to keep a child awake, but there’s no harm in asking. I know someone who drives a bus for SN, and he does sing-a-longs. This would be a bit of a stretch every single day, but again even if they did it once or twice a week it would help OP with bedtimes.

@AdriannaP

You want to give a 6 year old an ipad to use on a school bus? Bad idea and won’t survive long I am sure.

I don’t think it is the PA role to keep her awake I am afraid. I think yabu to ask her.

I used to work at a special school. Over half the kids had iPads or other devices to use on transport. Put them in a protective case designed for children to drop and it will be fine. 40 minutes is a long time to expect a 6 year old with ASD to sit unoccupied

Gp’s can’t prescribe melatonin as it’s not licenced for use in children. This doesn’t mean it’s not save just that there haven’t yet been any long term studies. i went to a talk from cahms and they explained that there are long term studies into effects of no sleep which can cause long term physical effects on body so that’s why all things weighed up it is prescribed to certain children even though not licenced. If like me your child was discharged on diagnosis then you’d need a re referral to paediatrician or cahms depending on are. However as you will be aware the waiting lists are massive and they are likely to to insist you try all the traditional solutions like warm bath before bed, wind down time etc so start keeping a diary to evidence this in case you can’t sort out in short term. In short term I’d definitely try the iPad to see if that helps. Maybe you could try a slightly later time, my son is autistic and I think I got abit fixated on what a normal bed time should be when he was younger but over time I’ve actually found thst sometimes going later he will settle much quicker and he asleep earlier than if he’d gone to bed earlier. Mine still takes along time to settle but he has audible on a timer for about 45 mins and if he’s still awake I put it on again and he eventually drifts off with it. Ignore some of the comments from people with nt kids only they don’t have a clue. I don’t pretend to have the answers it’s just suggestions and finding what works for you, then remembering that when you think you’ve solved it something will happen and you’ll be back to square one! Over time ive thought sometimes you have to do whatever is right for yourselves to get through the days ignore the rule book

Hey sorry reading most of the these replies they seem to be coming from well meaning parents of neurotypical children. My eldest has Autism and adhd and bed times were a massive struggle for many years. He ended up getting melatonin to help him sleep and it’s been amazing. Would you consider something like that? As for the PA they may not realistically be able to keep your daughter awake but I would explain the problem and ask if they can try. I would also give her a well cased tablet or iPad or kindle if need be. Getting no sleep or sitting with a child who is in meltdown at night for hours is mentally, physically and emotionally exhausting so do what you have to. If your anything like our family nobody you don’t get nights off ever.

I am reading comments that people say GP can’t prescribe melatonin to kids. My sons paediatrician did but only after we worked with a sleep counsellor who put in a report to say no methods will work. We tried virtually everything. I am in Scotland though.

I think trying to keep an exhausted child awake would be cruel, I wouldn't feel comfortable doing it - although I understand what a nightmare it could make bedtime :-( I think the knowing the school are on board though the ipad is a very good idea - or perhaps a kindle which would be much cheaper to replace. I would definitely try that route.

I was an autistic child who never slept, and I feel your pain. For me, it was the anticipation of school the next day, knowing I had to get up and had to get to sleep that made it impossible to do so.
(Im the same with appointments now)

I remember watching an excellent programme on children with sleeping problems on BBC. Did you know that tired children will actually become MORE active???
A sleep clinic would hae been so helpful when I was a child. .

Wow. Some of the replies. Not helpful !!!!

My dd almost 5 isn’t sn but the odd time she has cat napped at 3/4 in car even if only 15/20min she obv doesn’t want her usual bedtime of 630

One night she didn’t sleep till 8. We swore then to never nap again 😂

Which fir her is late and was grumpy next day

Obv a child with sn esp autism if has a nap isn’t going to go to bed usual time and may take hours

Def ask pa to try and keep awake

Can get cheap iPhones and download stuff from prime ceebeebies etc on it to watch

Or simple games to play

Or ones that you colour on screen

And try the gummy bears. They worked wonders fir my friends little boy and sleep

@Branleuse

Have you asked the GP to prescribe melatonin, since she takes 3 hours to sleep even without this nap

A gp can’t prescribe melatonin to a child it’s not licenced for use on children

A gp can’t prescribe melatonin to a child it’s not licenced for use on children

There are numerous children at my school prescribed with Circadin, which is melatonin. Perhaps prescribed by a paediatrician rather than a GP, but prescribed for them, nonetheless.

Yes need. To be paed not gp

@Fundays12

I am reading comments that people say GP can’t prescribe melatonin to kids. My sons paediatrician did but only after we worked with a sleep counsellor who put in a report to say no methods will work. We tried virtually everything. I am in Scotland though.

Paediatrician can prescribe in England just not gp but most kids get discharged on diagnosis unless they are having medication at that point already and it’s difficult to get back to see a paediatrician again once discharged

@Howshouldibehave

A gp can’t prescribe melatonin to a child it’s not licenced for use on children

There are numerous children at my school prescribed with Circadin, which is melatonin. Perhaps prescribed by a paediatrician rather than a GP, but prescribed for them, nonetheless.

Yes but the post I was replying to (not sure if it was yours) said to go to gp and get which you can’t do.

So it is licensed for use on children then!

@Howshouldibehave

So it is licensed for use on children then!

It’s not licenced. It’s an unlicensed drug for children that’s why it can’t be prescribed by a gp and has to be prescribed by a consultant/ paediatrician/cahms etc. I went to a talk once and the cahms psychiatrist there explained it is not licenced as there have been no studies into long term effects on children. However there have been long term studies into effects of little to no sleep and results are not good, in deciding to prescribe they have to weigh up risks of unlicensed drug against risks of having no sleep and in cases where it’s prescribed the risk has been deemed worth it

Yes - ignore those who don't know autistic children and sleep issues.
Yes - get a tablet/ipad.
Yes - ask the PA for help, nicely.
Yes - speak to your GP about seeing the paediatrician for melatonin, or ask for an appt if you already have a consultant.

You should not feel bad for needing help with accommodations. Good luck

My daughter was prescribed melatonin from the psychiatrist who then asked my GP to prescribe and they did. Although they did on the understanding that the psychiatrist would monitor the medicine so my daughter sees her for medicine reviews.

@MrsSkylerWhite

I did, I was wondering about bus/train. 6 miles isn’t too far.

In theory, yes but if the Council’s funding isn’t there, it isn’t there. There are many vital services that are just not being provided now.

If the council doesn't provide the funding, it can be ordered to do so by the courts. In fact, a straightforward pre-action letter is often enough in itself to make them wake up to their duties.

@expat101

I would be putting her to bed later except on Sunday nights when she wouldn't be napping due to not being on the bus.

One story only rule and only for Big Girls though, ask if she wants to start trying out to be a Big Girl. Get that verbal agreement and start a new routine. Don't stay in her room after the story and make it clear its time to sleep now after the story. Tuck in etc.

I don't think it's massively helpful to post suggestions of strategies that work with neurotypical children.

@Marvellousmadness

Yabu this is not the PA's job.

Get her one of these watches that you can play games on so she can play that in the bus. Or an old iPhone/ipad.

Of course it's the PA's job.

My son has severe autism and learning disabilities,his paediatrician prescribed melatonin and,then the GP can prescribe a repeat prescription,
It doesn't always work though ,I'm sure it's great for those children who it does ,but it seemed to have a paradoxical affect on my son ,that said it's worth giving it a go
You could ask the Pa if she could try to keep your daughter awake ,but ime they are often supervising several children .

@Innocenta

It's absolutely a reasonable adjustment to ask the PA to keep the child awake.

It wouldn't be a reasonable adjustment to expect an additional PA to be employed for the purpose of preventing a short nap. The Equality Act doesn't = getting anything and everything that may make life easier! (Speaking as a severely disabled person myself.)

Anyway, sounds like the PA should be well able to manage the task under the present arrangement, so it's really a theoretical point. Very glad that that's the case since there's every reason to think it will improve things for OP and her DD!

It's not to prevent a short nap. It's to prevent major meltdowns all evening, child not getting a good night's sleep, being too tired to learn the next day. It's to help her mother have a normal night's sleep so that she too can function and work. If you look at that in contrast with the cost of employing an extra PA for an hour a day, it's totally proportionate.

In this case, I agree, with only two children to look after the PA should be fine to do this. My suggestion related to the possibility that the PA had responsibility for all the children on the bus. It looks like the council has already decided that this is an adjustment which justified the expense.

Gosh that seems hugely unfair to be flagged as a safeguarding issue for using a simple medication that is off the shelf in most of the world and can be legally bought into the U.K. It’s supplementing a natural hormone, it’s not anything weird and scary. Like you haven’t got enough battles to fight already for your children.

Anyway I use melatonin myself and find it very helpful. Way better than actual sedative type sleeping aids that are over the counter in the UK.

Btw I just found this NHS page that says GPs may prescribe melatonin for just this purpose (scroll down) if anyone is fighting this battle and not wanting to source themselves quietly, here’s some ammo! www.nhs.uk/conditions/autism/autism-and-everyday-life/help-for-day-to-day-life/