Another downer

[MelowMeldrew]

The police came to my home this morning.... my son was reported to them for hammering and banging his fists on his bedroom windows for near 2 hours at 5am today. Police obviously thought we had imprisoned him or something and I felt like a criminal, although they were OK about it after we explained. This is the 4th time he has been reported for the same thing in as many months, and it's increasing, and our neighbours think we are the pits basically. We get no reason why he does it, and only stopped it last time, bu having his bed moved into our room, but it is not addressing the issue that way, before Social Services suggest taking him somehwre (!), how can we stop this ? I can't stay awake all night, and he has 2 lights on and a TV full blast as well, we doubt he sleeps more than 4 hours a night and I really do need at least 6.... my partner suggests we ask for medication, I am loathe to go down this route, as I feel THAT is not addressingthe reason either.

[loulou]

Hi,

 

<'> <'> <'> sending some of these because i can't think of anything to say. It brought tears to my eyes reading your post. Hope the day gets better <'> <'> .

 

Loulou xx

[reuby2]

<'> <'> Does your son realise that he is doing it? Also how old is he?

The only thing I can possibly think of is some kind of padded material on the wall or something that would deaden the sound for next door (sorry I don't have any experience but am thinking about you). I hope today is better for you and that someone else has a good idea. <'>

[MelowMeldrew]

<'> <'> Does your son realise that he is doing it? Also how old is he?

The only thing I can possibly think of is some kind of padded material on the wall or something that would deaden the sound for next door (sorry I don't have any experience but am thinking about you). I hope today is better for you and that someone else has a good idea. <'>

 

He does know he is doing it and gets I'm afraid a real 'buzz' from so doing, we are very concerned he is going to go through the glass soon. We have noticed the last 6 months or so (He is near 12 now), he gets a 'high' from disruption and if he sees us worried or anxious, then this doubles the problem, he really enjoys the reaction. Sounds a bit like Attention Disorder kicking in, which he really didn't display in the past. I play it down and try not to give him the attention over it but attempt diversion tactics, but at 5am I am out of it ! Family now assume as I appear to 'tolerate' some of his behaviour I am feeding it. I'm not, I am just trying not to assist him to crave even more attention, perhaps this is catch 22 ? The curious aspect is his special school reports he is almost mute, again this is NOT The child I have living at home, albeit he shouts and is chatty even if he talks gibberish at times, but silence would be lovely at home, when he has a bee in his bonnet his level of conversation is very fluent and articulated too.

 

Obviously people are having difficulty understanding how a child who is almost totally passive in school and not talking, is the devil incarnate at home, but, still wanting cuddles from us all ! My theory is he feels safe and 'normal' at home and can be himself (And then some !), but feels totally restricted in a setting where many people and peers are around, and shuts down, and it does seem provisionally even a special school cannot address this as yet, because they just haven't found a way to allow him to express himself. He doesn't want to know peers, and talks to people outside ONLY when he chooses too, i keep getting the 'blame' for how he is now.... have I indulged him too much do you think ?

[nellie]

MM, <'> <'>

 

I sympathise, you are in an impossible position.

 

Obviously people are having difficulty understanding how a child who is almost totally passive in school and not talking, is the devil incarnate at home, but, still wanting cuddles from us all ! My theory is he feels safe and 'normal' at home and can be himself (And then some !),

 

It never ceases to amaze me that people have difficulty understanding this scenario. It's very frustrating!!!

 

Sorry, I don't have any magic answers. Getting the support of a true expert might help. We have never gone down the medication route but looking back, I think I would reconsider if I had to do it again. I can understand your reluctance but it might just improve his quality of life .........and yours. An expert in ASD might be able to advise. Have you tried speaking to the NAS?

 

Good luck, it ain't easy and it ain't your fault!!!!

 

Nellie <'> <'>

[forbsay]

Thinking of you.

[ellisisamazing]

mm, It's sounds awful, I really feel for you.

 

Can you not get some respite at all?, I am generally against this cause my boy is only four and too young, but it seems that you are at breaking point and could really do with the rest.

 

Lisa xx

[MelowMeldrew]

Respite IS now on the agenda, but I feel awful about even discussing it, I know he needs more help than I can give him at present, it is finding a way that satisfies us all around, I'd prefer 'in-house' help or would even consider him being looked after by someone else for an odd weekend or something, but fear once you start that road, you are admitting failure, I feel I could cope OK, but the support needs to be right. I haven't yet seen one viable option offered as yet, that would address his needs, I told the S.Worker I DON'T want a baby-sitter, I would prefer those who would expand his horizons, any one can be a baby sitter, but if it's not helping me except to go out one night a month, I don't see any value, for my son, or for me... I have x amount of hours quiet, what's the point ? if he returns exactly the same ?

 

I'd just dread his return and I don't want that. I suppose ideally a couple with experience and preferably a child near his own age even for a few hours a week, might be the best option. The one thing he does seriously lack is regular interaction with other children outside school. We've no clubs or anything here, and social services offer 'days out' with disabled children of whom he has absolutely nothing in common, and anyway, they insist I go too, which defeats the point !

[ellisisamazing]

Yes, respite is a very difficult avenue. I was offered this several times but declined due to my sons age, I just feel it would be too much disruption to a routine we have worked hard to achieve, Also the thought of 'my' boy becoming attached to another set of 'parents' is unbearable to me! As a consequence my Boy's consultant has said that if we don't accept a social worker and respite now, there is basically no chance of us qualifying as he gets older!

 

What annoys me is that we may need this at a later date, but because we are currently doing good and coping well, we may have to suffer in the future!

[curra]

Hi MM

 

 

My son used to bang the walls and floor in his bedroom, play loud music, walk and turn lights on and off - all this in the middle of the night and several nights a week . He didn't know why he did it, he just said that he couldn't sleep and had to do "something". I got many complaints from my neighbours living in the flat under mine. This was before my son started taking Melatonin. If your boy's not sleeping enough every night perhaps medication is something you could consider. After a year and a half taking it, my son is now sleeping well with half the dose so I think that medication can help to form a sleeping habit. It may be worth asking the peadiatrician.

 

Good luck <'>

 

Curra

[Jill]

Can't offer any practical advice, but I do know what you mean about respite. People keep telling me I should put in for it for The Boy, but I just can't bring myself to do it. It feels like abandonment doesn't it? You want it to be good for them, not just a "I'll dump you here for a bit of time so I can have a break"

 

<'> <'>

[reuby2]

Hi Melow,

How has today been? I've been reading through the posts and agree that maybe medication is something to consider , I'm coming at it from a slightly different angle beause I have to take medication for anxiety, I was very reluctant at first to try it but it really has helped me, it's not a cure but can help. Also If your lad isn't sleeping, then I'm sure he wont be feeling very settled and I would imagine he would be feeling a bit edgy, When I've not been sleeping properly I feel on edge and have nervous energy, and that's only after a couple of days!!!

Also it occured to me that if he isn't speaking and is very passive at school, then is he not very happy there? And if he isn't happy could this behaviour during the night be something to do with him trying to cope with what's coming in the morning? I really don't know but hope today is better <'> <'>

[Suze]

Hi, sounds like he,s hypo-sensitive to noise............if you can get hold of Olga Bogdashinas book, sensory perceptions in as and autism.I ,ve just finished it and it has given me a wealth of help and info.My son has lots of sensory problems , he is hypo-sensitive to noise also.Basically it means they need audio stimulation, so they make lots of noise, like things(doorbell for example) that make noise, have the tv on loud, scrape and bang objects etc.Also my son takes melatonin to help him sleep and its been an absolute gods send.Will your son wear ear phones?, then he can get his audio stimulation without waking everyone up.

[MelowMeldrew]

Hi Melow,

How has today been? I've been reading through the posts and agree that maybe medication is something to consider , I'm coming at it from a slightly different angle beause I have to take medication for anxiety, I was very reluctant at first to try it but it really has helped me, it's not a cure but can help. Also If your lad isn't sleeping, then I'm sure he wont be feeling very settled and I would imagine he would be feeling a bit edgy, When I've not been sleeping properly I feel on edge and have nervous energy, and that's only after a couple of days!!!

Also it occured to me that if he isn't speaking and is very passive at school, then is he not very happy there? And if he isn't happy could this behaviour during the night be something to do with him trying to cope with what's coming in the morning? I really don't know but hope today is better <'> <'>

 

Well he has had a talk with his teacher at school today as I asked if they could try to find out why... he told them he was attracting the cat's attention ? I said he says that every time we ask him ! (There's no cats there and why 2 hours at a time ?). We've spent today moving his bed back into our bedroom, it's all that works. I don't know what else to do. One things for sure an child with a disability or issue will soon sort you out as a parent ! He doesn't really appear to me to be able to stop himself, and it's hard then to come down on him. He said tonite "It's my brain, take it out..." I can't in all honesty then get angry with him, he does seem to regret it but quite incapable of stopping himself. He's awake at night, bored, it's what he does... my neighbours couldn't care less, al they say is stop him, or they phone police, anyone, to make issues for you. I attended his autistic school over Xmas, and there are obviously 17-19yr olds who do much the same, and nobody assumes there is much you can 'do' about it.... while I accept some traits are born into him, society clearly does NOT. Drugging your child to pacify others seems very cruel to me... I'm considering a bungalow in the Lake District or something many miles away from people who won't understand, or try to.

[lorryw]

Hi Melow,

Have you been in touch with Social Services? They should have an occupational therapist who can give advice and practical help.

Ours is a total waste of space but you may be luckier. My son went through the same stage about 12 years ago. Our OT adviced putting bars at the window....we showed her the door!

I know its no consolation at the moment but our son suddenly stopped and never did it again, although he came up with loads of other ways of driving us crazy.

Lorainexx

[Suze]

melatonin has really helped my boy, he sleep walks and has night terrors, and hallucinations.Mornings used to be terrible because of his lack of sleep which impacted on school badly and on us as a family.My son begged me to help him , and asked to see the dr for something to help him sleep.If you choose to seek advice about using meds to help him relax and settle to sleep better, the people to benefit the most from your sons sleeping better will be him and you.I personally don,t see it as drugging him to satisfy society, myson gets full of so much anxiety at night and gets in such a state the melatonin helps to calm him .Check out the thread on melatonin via the forums search engine , you,ll find it does help some kids.

[lorryw]

I forgot to mention melatonin. It isnt a drug as such, in fact I bought a bottle for my son while on holiday in Florida. It was sold in a supermarket with the vitamin supplements!

Loraine

[MelowMeldrew]

I forgot to mention melatonin. It isnt a drug as such, in fact I bought a bottle for my son while on holiday in Florida. It was sold in a supermarket with the vitamin supplements!

Loraine

 

It seems to be for sleep 'disorders' I don't see this as his issue, he just doesn't need to sleep too much, and this is how he passes the time ! (Maggie Thatcher gawd bless 'ER !), only slept 4 hours a night AND run the country. So I'd be putting him to sleep for my own and neighbour's benefit not his ? doesn't seem valid... albeit I would then get some rest myself it seems drastic. Basically I've only ever taken paracetamol once or twice in 15 years so..... I'm no fan of medication, I'm saint either, so I must have a martyr wish or something...erm... NOT ! I think if there's a problem I'd like to work it through, but my partner doesn't agree, she like s a social life and a rest now and then ! I seem to have devoted every single day to my son since he was born, without thinking about it...... socializing is what other people do, and I just fell out of it really, my son needed me what else was there to do ? Social Services were rubbish, school was pathetic until now, the LEA waged war on me and mine... would still do if I gave them a look-in (Which I don't !), my sole aim is to see HIM socializing really, it seems more and more remote... but I ain't giving up yet ! Tomorrow is another day... at present he has fell asleep in the chair, looking at him you could forgive him anything, I'm too soft really ! Then again he gets precious little from anyone else so....

[chriss]

People kept quoting that Mrs Thatcher fact to me when I was getting 3 or 4 broken hours of sleep every night due to my son's night time habits. The thing is Margaret Thatcher also had daytime naps! It's not the same as having only 4 hours sleep in every 24! Plus if she had gotten more sleep she might have shown more humanity...

[Cat]

Can I throw this one into the pot - do you think that he is afraid when he is the only one in the house who is awake. Could he be making the noise to keep him company? Been here done this and still wearing the T Shirt. My son does not really have a sleeping disorder he just does not sleep. That's cool now that he is 19 and can handle that but he could not when he was 12. Your son may not even realise that he is afraid or does not like the quiet in the house. My son had the TV on full every light in the house on and was wandering about the house as if it was the middle of the day. I did not move him back in with us I moved in with him and after a few nights started laying some rules down. TV is fine but you need headphones on to be watching it at 3am. Same for the CD player. His turn around was when he found on line friends in America who were up because it was daytime there. Of course this was from him being 16 when he did have more common sense. He is still very much awake for most of the night and the reason for this is that he worries about people breaking into the house while we are all sleeping. Sleeping we live in the house that NEVER sleeps. I have two of em and the youngest is not a good sleeper either. Know how you feel.

 

Cat

Edited January 8, 2007 by Cat

[Deedee]

We have just started respite after 3 years of resistance and to be honest its worked out better than I could ever have believed possible..

I was talking to our local housing officer one day about it ( she had a son who had respite) and she convinced me to at least hear SServices out.We had a meeting and went through all the various options from couples to befrienders to overnighters and I couldn't face just handing my son over so we came up with direct payments instead.Our local Scill centre advertised for us for someone (We get 3 hrs a week in termtime and 7 during the hols but can jiggle if needed)and they handled all the interviews and paperwork all I do now is sign a worksheet once a month!!We interviewed 4 people and we now have a wonderful 17 year old 'boy' who has a brother the same age as M and by all accounts is his double!He has fitted into our family with ease and is a godsend.At present he mainly comes over to play but we are feeling very confident that when the weather gets better trips to the park will come too.

With our son we have to be detectives too to find out what he actually means or wants sometimes its a nightmare but often it actually gets solved somewhere along the line,even if it is months after With the cat thing have your neighbours got a cat that side??It sounds like the sort of thing my son would do to next doors dogs It makes sense to him they can hear him and he forgets there's a wall in between!!

[MelowMeldrew]

Can I throw this one into the pot - do you think that he is afraid when he is the only one in the house who is awake. Could he be making the noise to keep him company? Been here done this and still wearing the T Shirt. My son does not really have a sleeping disorder he just does not sleep. That's cool now that he is 19 and can handle that but he could not when he was 12. Your son may not even realise that he is afraid or does not like the quiet in the house. My son had the TV on full every light in the house on and was wandering about the house as if it was the middle of the day. I did not move him back in with us I moved in with him and after a few nights started laying some rules down. TV is fine but you need headphones on to be watching it at 3am. Same for the CD player. His turn around was when he found on line friends in America who were up because it was daytime there. Of course this was from him being 16 when he did have more common sense. He is still very much awake for most of the night and the reason for this is that he worries about people breaking into the house while we are all sleeping. Sleeping we live in the house that NEVER sleeps. I have two of em and the youngest is not a good sleeper either. Know how you feel.

 

Cat

 

I feel he must be lonely, but is he ? being as he doesn't mix really with anyone but his parents... but that does seem a fact of his life, and we haven't, nor anyone else, succeeded in changing that, I would have thought as he 'chooses' this option or has no choice (Whatever !), he isn't frightened by it. What DOES unsettle him is other people. He does have acute hearing (My father did too !), and a neighbour starts work at 5 30 am, I think he hears them and wakes up, and then tried by banging on the window, to display his annoyance ! Last time he did it, we found out he could hear a new-born baby crying across the road, and made a very noisy response to it at 6am in the morning and woke half the street up doing it !

[Cat]

I feel he must be lonely, but is he ? being as he doesn't mix really with anyone but his parents... but that does seem a fact of his life, and we haven't, nor anyone else, succeeded in changing that, I would have thought as he 'chooses' this option or has no choice (Whatever !), he isn't frightened by it. What DOES unsettle him is other people. He does have acute hearing (My father did too !), and a neighbour starts work at 5 30 am, I think he hears them and wakes up, and then tried by banging on the window, to display his annoyance ! Last time he did it, we found out he could hear a new-born baby crying across the road, and made a very noisy response to it at 6am in the morning and woke half the street up doing it !

 

You don't have to crave friends to be lonely. You are his friends and his family. My son never wanted friends at that age and he also has hyper sensitive hearing but some noise does not bother him. If he is using the noise to break the silence which could be part of the issue - then the noise he is making is his choice and wont bother him. I hope that makes sense? It sounds to me that because he has got hyper sensitive hearing during the night he can hear a pin drop and will then react to that noise. There is nothing else for him to do. He could be bored and reacting to a noise he can hear may be something he does to occupy himself. My son spent his nights looking for insects and then screaming if he saw one. One morning at 5am we had to empty his room to the bare boards to convince him that we did not have an infestation. Once he could occupy his mind during the nights it did all get better.

 

Cat

[MelowMeldrew]

You don't have to crave friends to be lonely. You are his friends and his family. My son never wanted friends at that age and he also has hyper sensitive hearing but some noise does not bother him. If he is using the noise to break the silence which could be part of the issue - then the noise he is making is his choice and wont bother him. I hope that makes sense? It sounds to me that because he has got hyper sensitive hearing during the night he can hear a pin drop and will then react to that noise. There is nothing else for him to do. He could be bored and reacting to a noise he can hear may be something he does to occupy himself. My son spent his nights looking for insects and then screaming if he saw one. One morning at 5am we had to empty his room to the bare boards to convince him that we did not have an infestation. Once he could occupy his mind during the nights it did all get better.

 

Cat

 

I think sleeping would be a good idea !

[Suze]

please check out that book by Olga Bogdashina, it has lots of stratergies to help and explain the audio sensitvity your son has.

[elun1]

I don't actually see respite as 'failure' or dumping your child when you've had enough. My ds is 5 and we get 6hrs per fortnight. I have a 7yr old also and this is special time for HIM - he deserves it. So does my boy with autism. I am married but dh is a shift worker and I'm a teacher (part-time). Therefore in order to avoid using nurseries or childminders we have always worked 'opposite' hours so the boys can almost always have a parent around. This usually means I parent alone day AND night, which means my eldest ds soetimes has to come second to ds2's needs. Respite is a lifeline for some families - my son's worker is very experienced and they always do something which he really enjoys - he doesn't stay overnight but I wouldn't be against this. My son will need lifelong care and I think a night away starting on a very occasional basis and building up gradually will be to his benefit in the long term

Elun

[MelowMeldrew]

I don't actually see respite as 'failure' or dumping your child when you've had enough. My ds is 5 and we get 6hrs per fortnight. I have a 7yr old also and this is special time for HIM - he deserves it. So does my boy with autism. I am married but dh is a shift worker and I'm a teacher (part-time). Therefore in order to avoid using nurseries or childminders we have always worked 'opposite' hours so the boys can almost always have a parent around. This usually means I parent alone day AND night, which means my eldest ds soetimes has to come second to ds2's needs. Respite is a lifeline for some families - my son's worker is very experienced and they always do something which he really enjoys - he doesn't stay overnight but I wouldn't be against this. My son will need lifelong care and I think a night away starting on a very occasional basis and building up gradually will be to his benefit in the long term

Elun

 

Our area social worker has come up with nothing at all basically, all she suggests is a relative should help out. The only possibility there has no real time she can spend with him on a regular basis, and really, has no idea how to handle our son. wWtried her in the summer, she went on a holiday offered to take him...bliss ! 28 hours later she phoned us in a panic, to pick him up, he refused food, water, toilet, sleep, communication, she didn't really want to know after that ! I am assuming I need quite trained people, and mean-wells are not going to cut it, even family.

[MelowMeldrew]

Never rains etc. had a note from the school this week, he is withdrawing intelligible conversation. He just whispers so people can hardly hear, and when asked said "started whispering at 7.30am", the school has apparently been thrown by this and now suggest after 11 weeks he needs intensive speech therapy. When I spoke to him at home he laughs, and seems it is some sort of 'game' he is playing. It's one, that is going to backfire on us all I fear..... anyone else had an aspie suddenly stop conversing for fun ? Do you think our recent house move is just kicking in ? He has started locking people out of the house as well, he says he doesn't like people visiting....