Hi, New and need help

[MancMark]

Hi i'm Mark

 

I have a nearly 9yr old son who has been diagnosed with pdd 8 weeks ago.

Me and my wife always knew there was something not right with how he was growing up, especially in social circumtances, but at least we now know why. The only problem we have got is what help is actually out there. Before we got the diagnosis social services told us when we got it they could help, now they say "Because I dont beat him" they is nothing they can do.

He is really improving at school, except for playtime,dinnertime and when having to do group work because the littlest thing can set him off. The main problem with school is they say there is no problem and even after taking the letter off the hospital his so called mentor still says there is nothing wrong and there is no need for them to get involved.

We found that when he gets home, the moment he leaves the school gates he turns, arguing, screaming and even violent. you can ask what is wrong but you always get "I dont know" and this can go on for hours and has been known to go on for a few days.

We also are having problems with his sleep, he never has more than 3hrs a night, and we have had to fit locks on the living room door because he decides to climb on the units, as me and my wife are 3 floors up we thought it best because if he falls we can not here him down there because he can be so quiet.

We also have a 7yr old girl who doesnt have any problems, which we find hard when havin to discipline them both because we have to do it different to each of them, then the is will cause arguments because we dont treat them the same.

Sorry to be ranting its just after 2yrs of really knowing there was something wrong and now knowing and still gettin all doors close for help we dont know what else to do.

Oh. There is also 1 last thing which we are unsure if it is the asd or something else. He says he hears voices. he told us in one of his rages "God told him he had to kill me and my wife, if he couldnt do that then he had to kill himself, and he didnt want to die, so it was us" he also carved into his drawers "Dad is death, and mum is death 2" When u ask him he says he hasnt said this.

Any advice would be appreciated. Thanks for listening

[lynne]

 

 

Hi welcome to our confusing world.

 

Children with ASD or aspergers get very anxious and they take this anxiety out in a number of ways and to varying degrees.

 

Support at school is what is needed, or it may be a case of moving schools.

 

 

My friends son who was also diagnosed ASD received no help at school. He did not get into trouble at school and completed his school work. Yet at 3.30 he would come out of school and beat up his mother. He would not sleep and the beatings to his mother could be very severe depending on how stressed he was.

 

The behaviour at home got worse until the child stop talking at home and at school due to stress. So at the age of 10 years he was moved to a speech and language unit. He went from receiving no help to being in a group of 6 with 2 teachers.

 

As the child became more confortable he began to talk more and was intergrated back into a main school for maths and english lessons.

 

25 weeks later he moved to a independent senior school which was funded by the LEA. This is because the school could provide small class groups alongside being able to take GCSE and A levels later on in his school life. But this child could not survive in a large senior school and was to acedemicly able for a special school.

 

 

So it appears you child is very agitated and is displaying it in another way. Seek help from your psychatrist so the right support can be put in place for your child.

 

 

[MancMark]

Thank you lynne for your quick response.

We have been in contact with parent partnership, which is goin to refer us to the health visitor for children with asd to hopefully see what help is going to be available.

The only problem we might have there is if like most insitutes we have been in contact with is that they will only help if we recieve DLA and we are still waiting to hear from them as they are waiting to see what school say about him(see an appeal comming)

We have the arguing, no social skills, him being always right even when proven wrong, violence, trouble with eatting and no proper sleep pattern. But the new one with hearin voices, what is the best way to explain this without make him sound like a fruit cake.

[bid]

Welcome to the forum MM

 

You can ask your GP for a referral to CAMHS (Child and Adolescent Mental Health Service) for help with issues like the 'voices'.

 

Bid

[Sally44]

I think it would be helplful for you to get in touch with the National Autistic Society and ask them about their Help programmes (for parents of newly diagnosed children), and also to get your name on any future seminar going on in your area about the Special Educational Needs process (SEN). Children with difficulties start on School Action, then School Action Plus (which is when outside professionals such as SALT and EP are called in). I presume they have observed and assessed your son and contributed towards him getting the diagnosis?? As he is having difficulties with social interaction skills and play skills then school should be recognising that and that is a need that they should be getting outside help and advice from. Ususually this is the Speech and Language Therapist. Their remit is also social skills and some behavioural issues. I would write a letter in to school about his difficulties, and I would also speak with and write to the SALT department - but speak with the NAS and also phone IPSEA.org as well as they specialise in this area to.

For example my son is diagnosed with high functioning autism and goes to a mixed mainstream/SEN school that has a specialism in autism. He has a dedicated TA. He gets weekly SALT therapy sessions from a Speech Therapist and she also covers social skills. His nominated TA practises the SALT programme on a daily basis. With any new social skill he is always supported and prompted in the playground to ensure he uses it and generalises it into other situations and with other people. He goes to a Social Skills Club and also attends dinnertime clubs usually 2-3 times a week. They are also going to start to use an ongoing assessment process called SCERTS which you can google and see if that might be something worth mentioning to the SALT.

There is lots of things they can do, but usually it involves parents finding out what their child is entitled to and pushing for that. That is why you need to learn about the SEN process.

Regarding his other difficulties about him hearing voices etc. Can you go back to the original consultant who diagnosed - sometimes they give you an open appointment for the following 6 months after they have originally diagnosed. If not go to your GP and talk to them about it. There can sometimes be associated mental health issues and these need to be discussed as high levels of anxiety or stress can make any other underlying conditions worse. The GP may refer you to the community mental health team (CAHMS), I don't have experience of them, but many other parents on this forum do. You also need to speak with the doctor about his lack of sleep. There are medications or hormones that can be taken that may help with this. You could also post another question specifically about these problems in the Help and Advice section and other parents will give you their experience and advice.

Usually getting a diagnosis is not the end of the process, but the beginning. It can be like a tiring long term marathon. But for those parents that do get clued up and start putting everything in writing and keep pushing and following the system through - you do usually come out the other side. You can always contact the NAS/IPSEA and their various helplines. You might also find it useful to get in touch with your LEAs Parent Partnership as they should be able to advice and support you with educational issues and can be asked to come with you to any meetings regarding your son to do with his school or the SEN process. You might also find a local parent support group helpful for local advice and support from other families in the same position as yours.

[MancMark]

Thank you both.

Saw doctor last week regarging sleep. They have made a nother referal for CAHMS, where he got his diagnosis. they closed his file after 5weeks because they said there is nothing thy can do to help now, but our G.P said they will be able to prescribe some melatonin to help relax his mind before sleepin. while we are there we will discus these voices also then:).

I think as we are only in the early stages of realsising what the problems are, this is where we have higher stress levels and seem not to be able to cope.

Will look at SALT see what help/advice they can offer thanks. any is bestter than none

[smiley1590]

hey there

 

sorry you having tough hard time of it knowing what to do and how do things right! hows long he had the voice telliing him to kill you and your wife? if not himself that god said for him to do that? has he been tested for MH probs pyschosis,depression anxiety? has he has treatment for anger aggression spells? sleep probs are common in people with kind spectrum disorder has meds being suggested? techinques? like bathing before bed? calm his brain down as speeds up fast thinks too much! i know mine does that for sure! climbing is another common factor in spectrum i hear voices when MH playing up so this be worth seeing whether there is something else laying within too! see a pyschologist,pyschtrist? these anger and violent outbursts can also seen in spectrum as trying to express thoughts feelings emotions that can physically explain away! he may be confused frustrated? i have AS ,dyspraxia so know it bit different but still can relate to some personal experiences you mentioned about your son! good luck with everything! i keep chasing and nagging help and support everyday if possible if become a nuisance might finally listen as got to do something! do you think he'd act on these voices from god telling what to do?do you know what started these voices off in first place? does he do dangerous behaviours when he tells you this?

 

hope this web links help you out with more information and support networks/groups out there!:

 

http://www.autism-pdd.net/

 

http://www.pervasivedevelopmentaldisorders.com/

 

http://www.childrensdisabilities.info/auti...m-asperger.html

 

http://www.wrightslaw.com/info/autism.index.htm

 

http://www.maapservices.org/

 

take care

XKLX

[MancMark]

Thank you smiley, will have a look at the links now.

His voices have only been a new thing fo approx a week. and will he act on what they say, How he turns anything is possible. Only thing he does that looks like a release is pick at his hands and arms till they bleed oh and screams

Think hard part was got diagnosis and that was the end of it. just told there was nothing they could do.

Will keep you informed what happens and hopefully the voices will stop

[smiley1590]

picking scabs form of self-harm and you are right this release for him the self harm voices are all connected to his MH probs he's personally experiencing i have personal experience with both! so i understand what like to go through this situation not easy very hard i did anything like your son get so desperately scared afraid confused of myself i don't think voices will disappear i keep a record /diary of when and how often occur and what he saids and does brief description but give as much as you can that important! has anti-pyschotic meds been suggested for voices? e.g. rispidone -risperdal i would research and discuss further with GP to make emergency appointment!

 

hope didn't upset you didn't mean to if have!

take care

good luck

me X

 

 

[Sally44]

I think it might also help if you can in some way explain to your son about the things he finds hard and the things he is good at. If he has any sensory issues I found it helpful to explain to my son that he sometimes experiences things differently to other people. Otherwise they think it is them and that they are bad or stupid or a loser or crazy etc. Obviously you need some time to get an understanding of his difficulties, but then start to discuss it with him at times when he is calm and can listen. Just do it in short bursts of information as he may not be able to take in lots of dialogue.

I have a parent who has always had depression from a child and has attempted suicide a couple of times in her younger years. She said it took her until her mid forties to suddenly see that there was no reason for the depression and that the feelings she got during those episodes were part of the illness and that all she had to do was understand them for what they were whilst knowing that eventually that episode would pass. For example if your son is hearing voices telling him to kill himself or his parents he is going to be feeling very bad about himself and also very scared. It might help to just keep it very simple and tell him that there are other people who also hear voices too - then see if that provokes any questions from him.

[Guest featherways]

He is under SUCH pressure in that school. We can't cope with the noise, chaos, social expectations - it's like you being put inside a speaker at a Rock Concert and then asked to work and stay calm all day. Honestly, that's the level of screamingly loud 'pain' we feel at a standard school when it's break time. No wonder his brain keeps going into meltdown - so would yours.

 

They need to start from scratch and restructure his day to minimise the sensory problems, I'd say. He needs a really quiet zone to chill out in, free from any need to communicate. Should be possible to find one, if they put some thought into it.

 

As for sleeping, has he tried sleeping under a heavy something? Difficult in summer, but things like weighted blankets (available online) can help some of us by helping our brains to switch off more. Something about the constant pressure from them is very calming.

 

Hell for you, though. Goodness, you'll need a cuppa...