history keeps repeating itself

[pingu]

Hi There.

 

We have a phychologist appointment on wednesday. this is supposed to be concerning K. (8-Asd, and many other things) The doctor asked us to complete a sleep diary to see if he needs melatonin.

 

During our observations of K's sleep it became clear that he does have huge difficulty sleeping, but the reasons for this are not down to him, they are down to his 15 year old brother with whom he shares a room.

Our 15 year old had twice been assessed for asd's but because he had a good meaning of emotion and good eye contact, it was found twice that he wasnt on the spectrum....

 

And you know how the story goes dont you. this means that even though he struggles in every single way with every aspect of independant living and thinking, he recieves no help and is branded the lazy clown of the school, who has no friends and is socially immature.

 

Anyway. it turns out that through doing the sleep diary that it is 15 yr old son causing the disturbance at night time, by doing stupid things, making noises, talking about stuipd stuff, just been generally daft really.

 

We really need his help to calm things down on a night, to stop K sleeping in L's bed for example, if he laid quietly then K would go to sleep, but the 15 yr old seems totally incapable of doing this...

 

Lo and behold, we had a rare opportunity to go out on friday and after much planning got all three round to mums, who had them for the night, and guess what..... 15 year old had a headache and went to bed at 8.30. closely followed by K who does everything his brother does. and all three were sleeping like babies by 9.45

 

In our house its closer to midnight....

 

Then.... parents inform me that their routine works a treat when they stay there and they cant understand why it doesnt work for us . Jesus the frustration in crushing..

 

We have been trying for 4 years to get things settled on a night, we've seen doctors phychologisis, mental health workers, occupatiuonal therapists. everyone has said... well just seperate them.... HOW. we live in a matchbox as it is. The only option we have is to give one of them our room, and for us to sleep downstairs, but i can guarentee that it won't work, because the boys will wander around all night cos they both cant bear to be parted, the 15 year old relies on K just as much as K relies on L.

 

There is so many other things that are soooo wrong at the moment, with all three of them. I believe they are all on the spectrum. and the CPN has said the same, but getting help and getting someone with authority to admit this to enable any sort of help is harder than getting blood from a stone.

 

 

Dont know what i want you all to say really, i think i just needed to vent at the frustration im feeling...

 

The world is blind.

shaz

[JsMum]

Hi Pingu

 

It does sound very frustrating and like there is no easy solution, especially as the boys can not cope with the seperation, may be this is where you could start to help both of them start to look at sorting out, you could use seperation blinds in the bedroom and have half of the room set out with different themes that would suit there faviourate charachters,

 

look at what is behind the disturbance that the older one is causing, what does he gain by distrurbing the household, may be have set things in place for the older one to help him cope with the seperation from K.

 

J has access to art and craft stuff, they are kinds of activities that are quiet, and calming and a way of release for stored emotions.

 

Have you recieved reports on your eldist stating that he is not ASD, I would ask for a second opion from a specialist centre, a referral will be needed but if you explain your concerns that all your children are on the spectrum and you would like a second opionion, Nas have further information on this and they sent me a list of specialist centres, you could aproach these and see what the process is, the route is called exceptional treatments panel throw your PCT.

 

You will need to put forward your evience and supporting letters from your local health service for example the sleep monitoring programme, CPN and other people as well as your own report.

 

Is your home your own, could you access the council in your area to apply for a larger house so that your boys can have a seperate room.

 

Housing Assosications are also worth a try too.

 

I can totally see that the issues are both the boys and space and privacy is an issue as well as a total new look at your eldists development.

 

JsMum

[pingu]

Hi Pingu

 

It does sound very frustrating and like there is no easy solution, especially as the boys can not cope with the seperation, may be this is where you could start to help both of them start to look at sorting out, you could use seperation blinds in the bedroom and have half of the room set out with different themes that would suit there faviourate charachters,

 

look at what is behind the disturbance that the older one is causing, what does he gain by distrurbing the household, may be have set things in place for the older one to help him cope with the seperation from K.

 

J has access to art and craft stuff, they are kinds of activities that are quiet, and calming and a way of release for stored emotions.

 

Have you recieved reports on your eldist stating that he is not ASD, I would ask for a second opion from a specialist centre, a referral will be needed but if you explain your concerns that all your children are on the spectrum and you would like a second opionion, Nas have further information on this and they sent me a list of specialist centres, you could aproach these and see what the process is, the route is called exceptional treatments panel throw your PCT.

 

You will need to put forward your evience and supporting letters from your local health service for example the sleep monitoring programme, CPN and other people as well as your own report.

 

Is your home your own, could you access the council in your area to apply for a larger house so that your boys can have a seperate room.

 

Housing Assosications are also worth a try too.

 

I can totally see that the issues are both the boys and space and privacy is an issue as well as a total new look at your eldists development.

 

JsMum

 

Hi J's mum.

 

Thanks for the advice. we are in council housing, and im convinced the pressure would be lifted if we could calm the eldest down on a night. He seems unable to switch off and fiddles/reads/but mostly he is awake just making odd random noises, or saying quotes from spiderman or something like that.

Hubby says its him that needs the medication and not kieran. the phychologist is going to be expecting to speak about K and we really need to speak about L again.

 

Thanks again. your ideas are very interesting and i will be looking into what we can do to make the situation better.

 

We have just been talking about giving the boys our room, as its a little bigger (not much) but at least they will be at the oppsite side of the house to the neighbours and their sister. we could have their room then.

 

shaz

[Mumble]

We have just been talking about giving the boys our room, as its a little bigger (not much) but at least they will be at the oppsite side of the house to the neighbours and their sister. we could have their room then.

Hi - I don't know if this is possible, but when my brother and I were little, before my sister was born (I was 6, my brother (ASD) 10), we lived in a tiny flat and my brother and I had bunkbeds in what was already a small room. Two people sharing a room who are on the spectrum in some ways similar but in many ways very different really didn't work . My parents ended up having the living room as their bedroom so my brother had their room and I kept the small room. We weren't a very sociable family and each kept to ourselves and we just came together in the kitchen (which was where the only table was - so we used to come together there to eat, do homework etc.) - and it worked much better sacrificing that family space to give everyone their own space - is there any possibility that you could try this, at least short term, to see if it makes a difference?

[pingu]

Hi - I don't know if this is possible, but when my brother and I were little, before my sister was born (I was 6, my brother (ASD) 10), we lived in a tiny flat and my brother and I had bunkbeds in what was already a small room. Two people sharing a room who are on the spectrum in some ways similar but in many ways very different really didn't work . My parents ended up having the living room as their bedroom so my brother had their room and I kept the small room. We weren't a very sociable family and each kept to ourselves and we just came together in the kitchen (which was where the only table was - so we used to come together there to eat, do homework etc.) - and it worked much better sacrificing that family space to give everyone their own space - is there any possibility that you could try this, at least short term, to see if it makes a difference?

 

 

Hi Mumble, thats practically what we are doing now, its like they have taken over the entire house, steve and i sit in the kitchen because there is always one of them in the room, and they are always doing their own thing in there so we let them have it, and maybe reclaim the living room on a night for an hour whilst their in bed, only there bedroom is right above the front room, so all we can hear is them messing about and banging etc.....

They are at it now as a matter of fact. ive tried everything from punishment to praise to lights, to music to weights to gentle exercise, releaxation, even given them all a candlelit lavendar bath before now but nothing switches the two boys off, wheras our daughter cant wait to sleep on a nighttime, and gets frustrated at the constant noise.

 

I can stand in the bedroom and they would still mess about.... unless i loose the plot totally they wont switch off. they just sort of fall asleep when they can no longer stay awake.

 

But thanks for the advice, its just a shame we have to live in this divided way.

shaz

[westie]

If applying for another house is an option perhaps you can speed things along by asking for a medical assessment form and this speeds things up a little ? (as your 8rs old has diagnosis could you base it on that, and ask your psychologist if he would support application?

 

(My mum is almost 70 and has a lot of health problems not ASD related and we have just had to fill one in for her as I want her to live nearer me that is why I am aware of it.)

 

I am sorry that no one will listen to your concerns about your other 2 being on spectrum, sometimes you just cannot comprehend how daft some people can be! <'>