which services can I access for help with AS son

[jordansmum33ok]

Hi been having a few more problems recently and just wondered what services I can access

ss have visited in the past and said as I cope really well and dont know what help I need they dont do anything.

 

Problems I have are :

Son does not sleep or sleeps just few hrs so is constantly waking me up to ask for this that and anything

he is 13 but is more like 8 or younger in that he be skipping round front room singing at 3am

or gets angry at computer or people on it and will shout at 3am..

 

In his room I found alsorts and yes even stuff that belongs down loo.. he wont let me in to clean it. but I have too

 

He cant dress himself properly in that I have to give him trousers, boxers, t shirt.. keep socks/shoes until he needs them or they vanish.

He will only wear certain clothes too.some of these go on back to front, r inside out if i have not put them right way rd.

His bed is broke, I let him sleep in mine an now thats broke

his carpet is ruined.

 

He likes to tear up paper into small bits and this gets everywhere..puts big holes in the walls too, plus is heavy handed and broke back door window, bathroom door window all of which ive had to pay for twice now

 

Trouble is too me most of this is normal

I have to fill in a DLA renewal form and I really dont know where to start.. Its hard to concentrate and sometimes im so tired

Also was thinking of applying for a grant too but what can I ask for?

 

Is there any service that could help me with forms and sleep advice?

 

thanks[i][/i]

[Chloes mum]

Have you tried any medication to help him sleep? I know not everyone wants to go down the medication route, but sleep is very important for both of you. My daughter is only 7 and she is prescribed Melatonin to help her sleep. Before she was put on it she would be up most of the night running about or just staring out the window. She has improved massively since she started taking it.

[jordansmum33ok]

Have you tried any medication to help him sleep? I know not everyone wants to go down the medication route, but sleep is very important for both of you. My daughter is only 7 and she is prescribed Melatonin to help her sleep. Before she was put on it she would be up most of the night running about or just staring out the window. She has improved massively since she started taking it.

 

hi I would consider anything but maybe a problem getting him to take it though. Does it have any side effects that you know of?

thanks

[justine1]

Hi

 

Melatonin is quite good,saying that it does not work for everyone,and you will need to be firm and stick to a proper bedtime routine.I mention being firm because from what I can gather in your post he is using computer at 3am this can be overstimulating him and cant be much help.Does he have a proper routine that is up on the wall,so he knows what he has to do before bed and at what time?? All meds have side effects of some kind,I think the main problem is people may become overly reliant on it which won't solve the problem long term,best to tackle it now.

 

You can get help from the family fund to get new beds,and towards repairing any damage.Again I think you need to be setting clearer boundaries of what is and is not acceptable.Remove things he likes and restrict telly and computer time,these should be used as rewards for positive behaviour he needs to earn that. My son broke his bed and he slept on the floor for 6mths as I could not afford a new one,I definatley would not have given up my bed for him it wasnt my fault he broke it I also removed everthing from his room,including duvet covers and pillows,as he had damaged a few in a year.Then after the 6 mths I got him new things and painted his room and everything since then he has never damaged anything.I still keep things in his room to a minimum,I think its too overwhelming for him anyway.

[KezT]

your local Citizens Advice Bureaux shold be aloe to help you complete forms and also let you know what grants are available locally as well as nationally

[baddad]

Hi

 

Melatonin is quite good,saying that it does not work for everyone,and you will need to be firm and stick to a proper bedtime routine.I mention being firm because from what I can gather in your post he is using computer at 3am this can be overstimulating him and cant be much help.Does he have a proper routine that is up on the wall,so he knows what he has to do before bed and at what time?? All meds have side effects of some kind,I think the main problem is people may become overly reliant on it which won't solve the problem long term,best to tackle it now.

 

You can get help from the family fund to get new beds,and towards repairing any damage.Again I think you need to be setting clearer boundaries of what is and is not acceptable.Remove things he likes and restrict telly and computer time,these should be used as rewards for positive behaviour he needs to earn that. My son broke his bed and he slept on the floor for 6mths as I could not afford a new one,I definatley would not have given up my bed for him it wasnt my fault he broke it I also removed everthing from his room,including duvet covers and pillows,as he had damaged a few in a year.Then after the 6 mths I got him new things and painted his room and everything since then he has never damaged anything.I still keep things in his room to a minimum,I think its too overwhelming for him anyway.

 

Hi Jordansmum -

Just wanted to say I totally agree with the above. It is / can be incredibly difficult, I know, but medication can only ever be part of a solution, and should always be a last resort even then. At thirteen, he's going to be pretty set in his ways, so you're going to have to 'fight' much harder to establish routines/boundaries/expectations etc than you would have needed to when he was younger, but if you don't want him to be calling all the shots in the future it's a case of needs must. Can fully appreciate what you are saying about him being emotionally 'younger', but it is not really any more appropriate for an eight year old to be playing a computer at 3.00am in the morning that a thirteen year old (or a three year old, come to that). same applies to him 'not letting' you clean his room - that's not his decision to make...

You've said 'trouble is to me this is normal', and I think that's probably the biggest problem you've got. The family dynamic is turned on its head, with him dictating what you will do, when you will do it and even from what you have posted where you will sleep. That's not a situation that should be nor should have been allowed to become the norm, and respite, melatonin, extra DLA payments/funding aren't going to get to resolve the fundamental problem, which is one of him being in control when you should be in control.

You've not given much background on your son's actual levels of functioning - is he profoundly autistic, non verbal,severely learning disabled etc? If so these are additional factors that need to be considered in the approaches you take to behavioural management. If he is more able, then you really need to accept that these kinds of behaviours are not just 'part of' autism, and that labelling them as such becomes a self fulfilling prophecy because it undermines expectations of anything better.

 

I hope that's helpful, but honestly 'access to services' isn't the problem here (though i can fully appreciate why respite might be an absolute necessity at this point!)

 

L&P

 

BD

[trekster]

Hello

 

i found avoiding benzoates in my diet helped with the angry outbursts. Also getting the gluten and dairy out helped

me learn more acceptable ways to behave and understand others better.

 

Could he for example tear up old newspapers into the recycling box in return for you cleaning his room without fuss?

 

Definitely agree with trying to access respite care.

 

DLA tips for parents and carers section of the NAS website is linked below;

 

http://www.autism.org.uk/en-gb/living-with-autism/benefits-and-community-care/disability-living-allowance/dla-tips-for-parents-and-carers.aspx

[sky]

hi jordansmum. at last i have found someone who is going thru the same as me. i too have an autistic boy of 13 - who demonstrates the sort of behaviuor you describe. he has been having melatonin for a while with good results and no side effects . he wont take pills so i have to crush it and put it in a drink-i know this is not ideal but bettr than nothing. he too breaks things- it was my wardrobe that got it this week and i find poo allo over the place -carpets bed etc.thing is - he was fully continent until a year ago but since the onset of puberty has changed - due to the changes in his body he does not understand.he is only verbal to the point of telling me what he wants but not how he feels. he seems to keep it all under control for a week then has a major meltdown and this is the time things get damaged. school is also stressing him at mo so this usually occurs in thr morning when he doesnt want to go and of course escalates when in his mind however much he acts out mum doesnt take notice and still sends him!i know what you mean about forms being dauntjng when you are so tired mentally- i need to apply for higher arte but have been putting it offbut social services will help with form . please post me if yhou want to talk as i know how mentally draining it can be.like you < when visited up to now have always been told i am ok and coping well -its only in the past year things have changed. family fund will help with things but only once a year -you can apply online .

Edited January 22, 2011 by sky

[jordansmum33ok]

Hi sorry just to say he didnt break beds by being destructive .. he is a very big lad and forgets that I think

he just plonks himself on it and it went straight through.

His bed was metal too so I let him sleep in mine and mine did the same.

 

I know letting him on the computer is not best idea but he likes doing animated art photo art and web design and it stops him running around.

I have a daughter who freaks out at slightest thing so if his mind is not occupied and he shouts up to me at 3am or so for a drink of milk etc she freaks out then i have both of them yelling at each other..

 

He has however put a couple of holes in the wall so yes he was punished in that he lost money and tv time etc.. I have a wall that he can punch now which is solid but its the only one.

 

He does not have any other known speacil needs etc but he has got sensory issues and he says that he cant sleep and his mind is clouding

I have in the past told him he has to be in his room by 10pm and tv off 10-30pm but he is still wide awake at 3am.

I feel too cruel to keep trying as I find it hard to unwind.

 

I dont really want respite but could do with some help with forms as when i do have time im too tired or stressed.

 

thanks for advice

[justine1]

Sorry that I mis understood RE the beds. However,I have had problems with three of my boys sleeping patterns. Sams started from birth really and managed to curb it by the time he was 2 1/2- 3 yrs,it was hard work taking him to his bed everynight he would scream so loud the neighbours even looked exhausted!! But I didnt give up. Dan could fall alseep but would wake up 3-4 times a night and be awake for 1-2 hours each time,he would cry,sing do allsorts,I eventually gave him melatonin for a week,he now sleeps fine. My eldest is NT but he cannot sleep earlier than 10pm,however he needs to be in his room at 8.30pm,my rules!

My point is all three boys have a strict bedtime routine and have to remain in their rooms when its bedtime,NO MATTER WHAT!! They lay in bed awake for hours but they have no telly and no computer.

 

Cant you remove the telly from his room? And why do you have to get him a drink? Can he not get it himself? It seems that he is calling the shots by shouting for you to come to "serve" him drinks after 3am!

Sorry if I seem over critical but as I mentioned if you give him melatonin now and it works,when he eventually comes off it he will go back to square one and not sleep.So I would try other methods first.I know it may take him time to unwind but if he knows he can watch telly and use the computer why would he want to? His mind will be focusing on what he will be watching or playing on the PC.

[jordansmum33ok]

Sorry meant he asks permission to get himself a drink.. even though ive told him endless times.. just get one

Im in middle of doing his room so after i get him resettled and maybe with the help of medication I stick with the routine

and no tv computer after 10-30pm

thanks for advice

[puffin]

Does he have these types of behavioural issues at school? As I seem to remember on your other thread that he is doing well at school? Could it be that he needs more structure at home so he does not get so irritable and tired?

 

I think that the nigh time computer has to go - it is very overstimulating for many AS kids and they are not going to get into a good routine and sleep pattern if the computer is available 24/7. Have had similar issues with DD and had to remove the computer for a week for her to understand that we meant business about the computer going off at bedtime

 

Don't know what social services can offer - it seems to vary a lot between local authorities - there was a story about a seriously disabled, wheelchair bound 6 year old who needs 24 hour care in the news this week whose parents have to sleep in her room to monitor her breathing monitor who only get 3 hours help twice a week - so it is not easy at the moment with the cutbacks

[emmasmum]

First off have a look at Cerebra www.cerebra.org.uk - autism is one of the disabilities they provide support for. They have a sleep helpline manned by a specialist nurse, a stress helpline for carers and they also produce a guide which they will send you or you can download for free which gives really detailed guidance, question by question on DLA forms.

 

You could also contact Contact a Family www.cafamily.org.uk as they sometimes have parent support advisers who can help with forms etc.

 

I found this online:

Medway Disability Information Service at the Disablement Services Centre, Medway Maritime Hospital provides information help and advice on a wide range of issues relating to disability, including:

equipment,

housing,

holidays,

employment,

leisure,

benefits,

allowances,

education,

mobility,

local contacts.

Phone 01634 838947.

 

If your family is on a low income you could apply for a grant from the family fund www.familyfund.org.uk for household equipment (such as new beds), holidays, toys or clothing.

 

Hope this is helpful,

Carol