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Help my daughter wont stay asleep

ineedsleep

my daughter is 11 and has Asd. In mainstream school with echp. She takes melatonin. On a good night will sleep from 10-7. (This might happen twice a week on a good week).
a normal sleep would be 11-6 this I can cope with.

often will go to sleep and wake two hours later, (sometimes with a night terror), will then keep me awake also for at least two hours sometimes the rest of the night. I might get 1 -4 hours sleep. This is okay once to twice a week but I am struggling if it is more.

sometimes she cant sleep even with meds and falls to sleep about 2am. Again i am getting 1-4 hours a night.

somenights keeps me awake all night. When i am woken more than twice i cant go back to sleep.

if she wakes up she expects me to wake up and will shout until i go in to her. I have said she needs to go into me, she is not a toddler, but all she can think of and see are her own needs, probably due to the asd. I stay calm and reassure her but inside I am crying because I am so tired. I also encourage her to settle down and sleep and say that resting quietly is better than being wide awake and disturbing everyone including the neighbours. (She does not care if she disturbs others she thinks why should they sleep if she cant).

She has ecezma we have cream this can disturb sleep. Recently she has been suffering from thrush. I went to chemist and bought cream appropriate. Then we went to dr. We have cream same as i got in chemist plus different ecezma stuff. She will not put cream on herself ecezma cream or other cream. ( she will never put cream on self i do not just mean recently). Needs me to do it, will scream for cream every half hour. Expects me to come immediately even if I am in deep sleep. Swears and yells and is physically agressive to me.
By the time I have calmed her down i am wide awake. Twice a week i have work the next day, i am finding it hard to concentrate at work as so tired. In last 7 days alone I have had less than 4 hours sleep for five nights.

not to mention she is challenging through the day.

i have cut her nails short also.

has anyone any tips on helping her sleep or help us manage the situation.

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Comments

Ami2301

Hi @ineedsleep welcome to the community!

Sorry to hear you're having a tough time!

Have you checked out Scope's Sleeping tips?

Hope this helps

Sam_Alumni

Where abouts in the UK are you? We have a Sleep Solutions service in a few places around the UK that may be able to offer some support?

ineedsleep

Hi I am in East Sussex

vysvader

Hi,

A time ago, in a bus was a 6 years old kid behind me, jumping on my seat, and shouting as noisy as possible from a 15cm distance to my ears, for good 5 minutes just to show up itself. Of course, the whole time, the kid had been accompanied by own "parent" and the kid was 100% unmannered and neuro-normal (no ASD so near, it actually doesn't play any matter why's the kid uncultivated, with or without ASD, it comes), but the kid was obviously self-grew. Just a new anti-social personality. And sometimes, you can see something similar, anywhere... I thought to myself: "Do these parents really think that someone else should grow their uncultivated kids?"

There's a genetical predisposition for the time when she's getting tired. For each one it's different. But there are a few of small Mediterranian Islands wherein the people prefer to go to sleep in the morning after the night time is completely over (their ancestry was for a few thousands of years fishing on the sea in the night time) and so on... as an example, but there are furthermore studies and they found genetical predispositions in any nationalities, very huge percentages. Either way, they can sleep at night if want or are led to do so. If they go to sleep regularly each day at the same time.

Geoark

@vysvader I am impressed that you are able to diagnose if a child has ASD or not within 5 minutes.

I am far less impressed with the hint that it is down to parenting and poor quoting of irrelevant studies. But as you are interested in studies then perhaps there is some hope.

A good starting place may be https://www.spectrumnews.org/news/sleep-problems-autism-explained/

Children don't come with a manual, but for many with parents with autistic children if children did come with a manual it would be of little use.

Geoark

@ineedsleep sorry to hear what you are going through, if it is any help it is an issue that many parents with autistic children go through.

We never used one with our daughter, however I have read a lot of possitive comments in various forums for using weighted blankets, sometimes called gravity blankets.

If you have not heard of them there is a real good article at https://www.sensacalm.com/blogs/news/how-to-find-the-best-weighted-blanket-for-autism This is an american company providing weighted blanket but the information is good, including guidance on what to look for when buying.

It is recommended for children that they should not exceed 5 - 10% of their weight. There are different types and they can be expensive, so I would definately recommend speaking to one of the health professionals involved with your daughter rather than just going out and buying one.

Just spoke to my daughter who is interested in getting one, but has waited for someone she knows to get one to see how they get on with it.

@Sam_Scope do you know if we have any members with experience of these?

vysvader

Geoark said:

I am impressed that you are able to diagnose if a child has ASD or not within 5 minutes.

And furthermore, I'm not a psychologist. I mightn't provide a formal diagnosis but instead, I might give my best congrats to the parent for the multitone voice of speech, obvious and early verbosity, extroversion, and the only minded (both, verbal and non-verbal) social-focused interactivity, interpersonal. The annoying characteristics of neuro-normal kids (ASD projects also some plus, not only minus).
I reckon the frequency (density/concentration of events within a time unit) of experience per a timeframe giving the result (amount of observations), not the timeframe itself (the equation can't be about the time, the time doesn't project any equality in any way you try to build the equation)...
Time x frequency = number of observations. Both, the "time" and "density" are variables. I didn't reckon the period of time (variable) of the equation, I spoke about the result (the quantity, number of observations).

However, it seems to be about:

Geoark said:

I am far less impressed with the hint that it is down to parenting and poor quoting of irrelevant studies.

To be honest, I don't have any children so maybe I can see it simplified, however, despite the fact that it's a possible interpretation, if I insert results of a study as you can see on the picture below or mention the genetic diversity (as before) then it doesn't automatically mean that I speak about her kid. Instead, one could see it as a hope, an example of the success of parents facing similar problems. Surely, it's not unicate.

Is the picture relevant to ASD? It's a different topic and a statistical correlation doesn't automatically mean the causation. However, what I wanted to say, there's a general solution to the problem because kids having ASD aren't the only ones. So are the solutions different from that what she can hear about ASD? In the main core of the methodology, nope, the solutions are the same despite different/multi-factor causations.

Source: Kanazawa, S., (2010). Why Night Owls Are More Intelligent Than Morning Larks. P. 1. Psychology Today. Retrieved from: https://www.psychologytoday.com/gb/blog/the-scientific-fundamentalist/201005/why-night-owls-are-more-intelligent-morning-larks

Geoark said:

Children don't come with a manual, but for many with parents with autistic children if children did come with a manual it would be of little use.

I guess so.

vysvader

P.s., I hope we're not gonna be such superstrict about the scientistic (mathematical) background. If I come for help then I prefer to read the interpretation of research, or any enriching data from medics and any other users having a good advice (even without a university like many of the staff, it doesn't matter to me, I believe in them), not only the interpretation of data/research from real scientists like physicists, computer scientists, mathematicians, etc... those have held a professionality in research and interpretation thereof.

kami24

Have you tried herbal remedies and alternative options?

Geoark

@vysvader no I'm not going to be superstrict on things like that. My point was the relevance of the studies you mentioned and the subject at hand. Your final conclusion was for the child to go to bed at the same time each night, which the poster already said they do.

A good example is your choice to insert the graph in your reply to me with no context. I am not even sure what you are trying to say or how it is relevent to the discussion with it knowing the context. So children with an IQ below 75 are more likely to go to bed earlier than children with higher intelligence when they are an adult. I don't get what this has to do with an 11 year old autie having trouble getting a full night sleep on a regular basis.

Actually yes there can be variations in advice for parents with autistic children which would generally not come up in conversations concerning neurotypical children without disabilities. Weighted blankets is one, different scents is another one I have seen discussed where parents have had success in their use.

With regards to your skills and observations, the reasons why you decided that the child was not autistic are all traits my daughters showed and why it was not until her last year at primary school that those who knew her better than most actually started to realise there was an underlying issue.

'ASD projects also some plus, not only minus' this suggests you have either not seen or recognised an autistic child during a melt down.

Please do not get me wrong, I am not saying that you are wrong in saying that the child was neuro normal, just that your reasoning for them being so may not be the best. I would certainly agree with you that there are parents with very poor parenting skills. Having been through the links you provided in general they are accurate but there are those for whome these generalalities would not apply.

'And sometimes, you can see something similar, anywhere...' and here lies a common problem for many parents with autistic children, especially at the higher functioning end of the spectrum. Something we commonly hear is, all children face these difficulties. Yes they do, the difference is the severity of impact it has on the child and subsequently often on the family.

All that said, I do accept what you say that you was offering hope to ineedsleep.

ineedsleep

Hi yes she uses a weighted blanket. I havent tried herbal remedies but have given piriton tonight on gp’s advice to try and stop her itching.
going back to dr tomorrow.
the normal disturbed sleep i can cope with the extreme is ok for couple of nights but in the last month she has only slept through (11-6) about five nights in total.

Geoark

Hi @ineedsleep

It can be difficult to find causes in disruption in behaviour with autistic children as they often don't have the skills to express what is happening. I mention this as you have said that things changed in October. Was this around the time of the autumn half term?

Secondary school is a huge transition, moving from a single teacher to different teachers for each subject, and I know for my daughter having four different teachers in one year for one subject caused her a lot of difficulties. It is not unusual to see behavioural changes in most children at this age as they are given more freedom and responsibility. As new friendships form if child is not making friends then this will become more noticeable to them, and bullying can be a big issue. As everything seems more chaotic it can be difficult for autistic children to adapt.

Also if your daughter has sensory issues these can be having a huge effect on your daughter. My daughter used to come home, stomp upstairs and play her music loudly. Once she had calmed down she would turn her music down, come downstairs and talk to us. If we tried to talk to her before she was ready she would just lose it.

Fortunately we got some external help with the music, at a local community event we went to see a couple of representatives from the local ASB unit and asked for their help to find a solution. They were able to negotiate a couple of changes, so slamming her door once was acceptable, continually banging it was not and we got an agreement on how loud was acceptable for an hour or so. As she is very rule orientated this worked. At the end I said thank you and as I was 'dad' I could change the rules. One of them gave her her card with her number of it and told my daughter if I broke the rules to call her and she would take me to prison

Stress can certainly affect sleep, and even now I sometimes hear her sobbing in her pillow late at night, early morning when things are getting too much for her.

I am not saying this is what is wrong with your daughter, however sudden changes in behaviour and patterns usually have a cause. The cause can be very difficult to identify, especially if allowed to carry on and it becomes habit. But finding a cause, if there is one, can make a huge difference in finding a solution.

Stacey found it very difficult to express herself verbally when she was this age, we had however found that she could write things down that were bothering her. Even now if she says she wants to talk about something but doesn't know how to say it or how to start I ask her to write it down and we go from there.

One thing I am grateful for was when Stacey was younger we sent her to her room to 'calm down' and this was her safe area with all the things she wanted and needed. So by the age of 11 she knew she could go to her room and be left alone until she was ready to interact with us. I would also caution that if a child chooses to totally cut themselves off in their room this is not healthy or desirable.

Hope you find a solution soon. Not much help during weekends or holidays, but are you at least able to catch up on sleep when she is at school?

vysvader

Geoark said:

My point was the relevance of the studies you mentioned and the subject at hand.

No problem, if it's yet still needed then I'll help you. From the first moment, I've explicitly expressed that the sleep problems aren't unique for ASD kids and I proved it with an irrelevant study mentioning diverse causation. So, i.e. I performed an analogy of two different things and when I showed the association between them it proved that there's also another correlation which doesn't imply causation. If you'll want science once again then in science it's called a proof of concept.

Geoark said:

So children with an IQ below 75 are more likely to go to bed earlier than children with higher intelligence when they are an adult. I don't get what this has to do with an 11 year old autie having trouble getting a full night sleep on a regular basis.

"Adult"? It isn't present in the context. You don't use in-text citation, meantime, you don't need to give the credit for own ideas because you don't paraphrase the researcher, so it's fine.

You could already read why I mentioned it (even a few days ago) but if it's not the reason why you still come back then I guess you're just interested how to apply multiple factors and I recommend you discrete mathematics, or as a short and tasty starter, I would underserve you linear equations (in some "psy/soc" programs, you might surely meet it, but not in all, some of the programs don't have any math at all).

Geoark said:

'ASD projects also some plus, not only minus' this suggests you have either not seen or recognised an autistic child during a melt down.

Geoark said:
With regards to your skills and observations, the reasons why you decided that the child was not autistic are all traits my daughters showed and why it was not until her last year at primary school that those who knew her better than most actually started to realise there was an underlying issue.

I believe that you can be an amazing psycho-analytic and helpful for your 'patients' but now, your argument is based on an emotionally attached and (even) a single subject which is your own daughter instead of quantitative researches, etc. If you will want science once again, none scientist is supposed to accept the argument without a proof of concept of the correctness of the idea. What isn't measurable (in a scientific way) that doesn't exist for any scientist. If you hold on that then we have to move into philosophy where you can (sometimes) use the intuition instead of facts.

Best regards,
J. Vysvader

vysvader

P.s.: Proof by contradiction. And... as it's a scientific method, one version is also a mathematical proof, you can find it on Udemy. Just giving away because maybe someone will like it as much as I do as you can see throughout the entire topic.

ineedsleep

Geoark said:

Hi @ineedsleep

It can be difficult to find causes in disruption in behaviour with autistic children as they often don't have the skills to express what is happening. I mention this as you have said that things changed in October. Was this around the time of the autumn half term?

Secondary school is a huge transition, moving from a single teacher to different teachers for each subject, and I know for my daughter having four different teachers in one year for one subject caused her a lot of difficulties. It is not unusual to see behavioural changes in most children at this age as they are given more freedom and responsibility. As new friendships form if child is not making friends then this will become more noticeable to them, and bullying can be a big issue. As everything seems more chaotic it can be difficult for autistic children to adapt.

Also if your daughter has sensory issues these can be having a huge effect on your daughter. My daughter used to come home, stomp upstairs and play her music loudly. Once she had calmed down she would turn her music down, come downstairs and talk to us. If we tried to talk to her before she was ready she would just lose it.

Fortunately we got some external help with the music, at a local community event we went to see a couple of representatives from the local ASB unit and asked for their help to find a solution. They were able to negotiate a couple of changes, so slamming her door once was acceptable, continually banging it was not and we got an agreement on how loud was acceptable for an hour or so. As she is very rule orientated this worked. At the end I said thank you and as I was 'dad' I could change the rules. One of them gave her her card with her number of it and told my daughter if I broke the rules to call her and she would take me to prison

Stress can certainly affect sleep, and even now I sometimes hear her sobbing in her pillow late at night, early morning when things are getting too much for her.

I am not saying this is what is wrong with your daughter, however sudden changes in behaviour and patterns usually have a cause. The cause can be very difficult to identify, especially if allowed to carry on and it becomes habit. But finding a cause, if there is one, can make a huge difference in finding a solution.

Stacey found it very difficult to express herself verbally when she was this age, we had however found that she could write things down that were bothering her. Even now if she says she wants to talk about something but doesn't know how to say it or how to start I ask her to write it down and we go from there.

One thing I am grateful for was when Stacey was younger we sent her to her room to 'calm down' and this was her safe area with all the things she wanted and needed. So by the age of 11 she knew she could go to her room and be left alone until she was ready to interact with us. I would also caution that if a child chooses to totally cut themselves off in their room this is not healthy or desirable.

Hope you find a solution soon. Not much help during weekends or holidays, but are you at least able to catch up on sleep when she is at school?

Thank you for your response. It was very helpful. After school is a melting pot and she is usually hyper. We are in a difficult home situation, where I am getting divorced but we all still live in same house which does not help things. And i think when things are settled on that front it might be a bit better. No time to catch up in the day, if h is in I stay out even if that means walking through town or just walking through streets or sitting in car was not so bad in summer not so pleasent now. I also have elderly mother who has health issues and needs support. When i am home alone i rush abt getting chores done.

Geoark

Thank you for your response @ineedsleep

I am sorry to hear of what you and your daughter are going through. Is you're daughter being seen by CAHMS? If not it may be worth asking for a referral as they may be able to support your daughter through what is going on and help her. Though there might be issues with the support offered in different areas.

Not unusual for parents in your situation but I am also concerned that you are putting your own health needs last. At some point putting your daughter's and mother's needs first means putting yours ahead of them. Some sad facts are that divorce in families with autism is higher than than the norm, as is mental and physical health problems among parents.

You need to be thinking about yourself and your own needs as well.

Geoark

@vysvader

"Adult"? It isn't present in the context. You don't use in-text citation, meantime, you don't need to give the credit for own ideas because you don't paraphrase the researcher, so it's fine.

The fact that you question my use of the word adult and then insist it isn't present in the context says it all. Here are two parts from the same link explaining the table:

Net of a large number of social and demographic factors, more intelligent children grow up to be more nocturnal as adults than less intelligent children.

For example, those with a childhood IQ of less than 75 ("very dull") go to bed around 23:41 on weeknights in early adulthood, whereas those with a childhood IQ of over 125 ("very bright") go to bed around 00:29.

By all means please feel free to respond, however I will not be replying, I would rather concentrate on ineedsleep getting the support and help she needs.

ineedsleep

Thankyou @Geoark

she is on the waiting list for Cahms.
Yes I know I must think of myself as well. It is hard with lots going on. I do try and get a ten minute slot to relax in the evening. when she is in the bath is a good time as i am on hand as in next room but she is usually quiet and calm (not always) in there and it feels like a bit if down time for me too.

vysvader

Geoark said:
The fact that you question my use of the word

Rhetorical questions make it decent, softer, but if you can't grasp it or you see the politeness as a weakness then you'll be taught Greek / new Latin terms (from foreigners) and when you breach laws (and your loved academic standards) since you either give no credit (plagiarism), insert your own ideas in the mouth (study) of someone else as it's without a proper separation, or instead of proper quantitative research, you use your daughter, shame her and misrepresent all auties.

Geoark said:
By all means please feel free to respond, however I will not be replying, I would rather concentrate on ineedsleep getting the support and help she needs.

There'll be nobody responding that the law of noncontradiction doesn't show up a relevancy or logic (I find none more indicating that Aristotle with 200 IQ was a dull piece of a bovine, because it's his law) and none psychologist prohibiting the real scientists or anyone else to talk about science (I don't mean only the math, I see that none cares...).

Well, if it mightn't be another way... but that's it. I enjoyed the chatting with you but can't force you : )) Good buy!

Best regards,
J. Vysvader

Geoark

@ineedsleep I truly understand that if you can get your daughter to sleep through the night it would help you a great deal. While you have not mentioned it, with your daughter struggling to get a good night sleep over a period of time her behaviour during the day can become more challenging. With all that is going on and right on top of Christmas is likely to add up to a very difficult time for you all.

All this is happening on top of when most services are closed.

I am also guessing that you are fairly isolated with few if anyone to turn to, based on what you said about getting out of the house and walking around or spending time in the car. Without any quick fixes at this moment I am more concerned about you.

If you know when h is going to be in over the christmas period can you arrange to spend a little time with an old friend catching up? Much nicer for you and the change will probably help you a little. Could you arrange to spend a little time at your mums so you can grab a relaxing bath, a little wine, listen to some music and just relax? (if you cannot do this at home when h is there to look after your daughter). Just little bits of 'me' time that gives you something to look forward to and is not concentrated on worrying about your daughter or other issues.

If at some point you just need to speak to someone do not forget the samaritans are still there. Their number is 116 123 and is free on any phone, and they never close. You don't need to be suicidal and having another person to speak to who is not going to judge you can itself be very helpful.

I know myself and others will be logging in and out over the christmas period, including christmas day.

Getting back to the main topic, have you had a chance to look at the links on scope and have they proved helpful?