hi :)

[cardiff_mum]

hi there, im from wales and i have a 4 n half yr old son going through the statement process. we have been told "informly" and "off the record" that he has AS. the last year and half, aince he started nursery in may 2008 have been a livin nightmare. J's behaviour and social interaction is affected badly. when he was in nursery, i would be called nearly every day to pick him up early because he would scream, shout,kick or punch anyone that stopped him doing what ever he wanted to do. this included nursery children, nursery staff, even the head teacher!! the school called in a Educational psychologist, and he was imediately issued a IEP. this seemed to work for a short time, then, it would wear off and a new IEP would be written.

when J started reception in sept, things got a lot worse very quickly. J struggled, big time, to cope with it all, regularly having "meltdowns". within 6 weeks he had been formally excluded 3 times! finally, the school called the Primary Behavourial Team in and they assessed J and said he needed 1:1 so a LSA was given to him. for 1 and 15 mins a day. so, for 3 weeks, that was all the time J spent in school. the school could not cope without the LSA and im told i have to wait for a statement before they can get a full time 1. they have managed to secure his LSA now for 3 hrs per day. so J goes school at 9 am and i pick him up at noon. this doesnt look like it will increased before his statement is finalised, which wont be until the end of feb. what do i do? what can i do? i ask the school, i beg them to help, i have offered to be in school in the afternoon with my son if that what it takes. they say he needs to learn how to play, to socialise and be a member of his class. but how can he do this if he's there only in the morning??

today, when i picked J up at lunch, his LSA informed me that is wasnt a good day, he had been "quite violent" but didnt go into any more detail, just said that was alll i needed to know. i was very unhappy that i had to rely on a 4 yr old to explain what had happened in school. he told me that the teachers had asked him to take part in practising the christmas songs with the rest of his class. J refused, he hates loud noise, does not like music and says "it hurts my ears". he was then punished for not taking part!!!! the problem with J is that if you ignore him in any way, dont listen to his requests and reasons, he gets very angry very quickly. his anger often leeds to aggresion and he kicked the teacher today because she wouldnt listen.

these are classic behaviours of a AS child. but my son was made to sit outside the head teachers room for a 1 hr, in plain view of his classmates who then know he has been naughty and constantly talk to him about this. i am so angry. i wonder if i should take him out of school altogether, there are so many incidents like this, where his conditioin is not taken into consideration, even though it was the head teacher who told me "off the record" that it was either AS or some ASD. i know i cant fight the school too much, i have to be able to talk to them, but i cant ignore these things.

 

we are seeing a PD, who J had been refeered to when he was 18 months, because he seemed to b showing signs of OCD. the doctor wasnt overly concerned. at this point, Js diet became very rigid and restricted. we have seen the PD a few times, well, some doctosr that work for the PD at least, and every time a different 1. the last app we had in sept this yr was a disaster. the doctors 1st question to J (who is a only child) was to ask how he was now getting on with his sister... ???????? the doctor clearly had not read Js file, and had to spend 15 mins of a 20 min app reading it. but what can you do? where do you turn? J has also been seen by CAMHS, again, waiting for another app to come through, seems like i spend a lot of time waiting for apps to come through.

i dont know where to turn. i spend half my time in a daze, exhausted from the day to day stress of dealing with a AS child, and lack of sleep because i spend most of the night researching, finding out about this thing thats turned our lives upside down.

my boy is beautiful, kind, loving, clever, funny and all i want is the best for him. its been good to say all this, to people i know who understand where i am right now

 

 

[Kathryn]

Hi Cardiff mum and welcome. You've come to the right place: many people here will understand the struggles you're going through.

 

K x

[julie1]

welcome to the forum, i understand what you are saying and have been where you are fighting the education system. Infact we still are for another one of our children. I hope you get your statement quickly. but be careful to ensure it is detailed to meet your sons needs, not what the school say they can offer. In the mean time i would ask for a home school diary so your sons 1-1 can write and tell you about any positive or negative issues your son has had durring his time at school.

[JsMum]

 

 

 

Hi Cardiff mum, nice to meet you, Ive been there too with the nursery issues, though he did have support at that stage called the Early years Action which is support for children with special needs which includes behavioural, anger issues and social difficulties, the nursery certianly could be supporting you J a lot more especially as many understand christmas for many on the spectrum is a very distressing period with the increase in sensory issues.

 

So this needs urgent attention and wonder if your area have a Outreach Autism Service who can talk to the nursery to put in place stratagies for your son.

 

I have to recommend Contact A Family who will send you some booklets on challenging behaviour and just generally give you support.

 

http://www.cafamily.org.uk/pdfs/behaviour.pdf

 

http://www.cafamily.org.uk/index.php?modul...om489afd7cd606f

 

http://www.cafamily.org.uk/inyourarea/wales/index.html

 

The other port for additional support is National Autistic Society who have plenty of ideas for your sons nursery and the difficulties with christmas.

 

So do ring them too and if you become a member they send you information package and magazines.

 

Also they have HELP programmes which I absaloutly recommend.

 

Another idea I have also if you can get child care is attend a ASD parent support group.

 

Or Aspergers Syndrome Parent support group in your area, again National Autistic Society will help you find a parent group.

 

I got upset with your post about him been sat outside the heads office in full view of his friends, this reminds me of the time my own son was often humiliated for his outbursts so when he was outside the heads office he just bubbled and he then lashed out again at playtime only to be sent in again and so it continued all day, the school was very poor at helping his needs and only after fighting for a statement and a change of school did things get dealt with differently.

 

National Autistic Society also have booklets on stratagies for the classroom and playground and its well worth passing onto your sons nursery.

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=528&a=13865

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=10

 

I feel for you a lot as I went throw very similair with my son who is now 12yrs old and attends a specialist school now, he is still violent but they are addressing it and putting in place spersific stratagies and supporting him.

 

Anger is often a result of poor communication and high levels of frustration and severe Anxiety.

 

All of these things will require very spersific support.

 

Anyway I will catch up with you soon.

 

JsMumxxxxx

 

[cardiff_mum]

thank you all so much for your replies, its a relief to hear from other mums who know wot im going through.

to JsMum, ty so much for all your advice, its good to hear the tried and tested methods that work!

major meltdown today about eating (always a battle) half a hr of screaming shouting crying and hitting. its the worst, when they come out of nowhere, and once J had finally calmed down, he very quickly turned back into happy laughing J.

i find im always havin to tell people how to deal with him. one very helpful suggestion today was that i throw his new playdough in the bin. yeah right. cos that helps. whilst J was in nursery i tried every punishment tequnique that is known to man (an few i made up!) because i kept being told he was a naughty little boy. i could never work out at the time why he kept repeating his bad behaviour when he knew he would punished. now i know why, and i feel so guilty, every day, for not recognising there was a bigger issue earlier on.

on a happier note, J told me today that i didnt need to put make up because im beautiful already im still trying to work out if he meant it, or if it was just a ploy to get me to play ratatouille with him

anyways, thanks again for reading and responding

xxx

[JsMum]

thank you all so much for your replies, its a relief to hear from other mums who know wot im going through.

to JsMum, ty so much for all your advice, its good to hear the tried and tested methods that work!

major meltdown today about eating (always a battle) half a hr of screaming shouting crying and hitting. its the worst, when they come out of nowhere, and once J had finally calmed down, he very quickly turned back into happy laughing J.

i find im always havin to tell people how to deal with him. one very helpful suggestion today was that i throw his new playdough in the bin. yeah right. cos that helps. whilst J was in nursery i tried every punishment tequnique that is known to man (an few i made up!) because i kept being told he was a naughty little boy. i could never work out at the time why he kept repeating his bad behaviour when he knew he would punished. now i know why, and i feel so guilty, every day, for not recognising there was a bigger issue earlier on.

on a happier note, J told me today that i didnt need to put make up because im beautiful already im still trying to work out if he meant it, or if it was just a ploy to get me to play ratatouille with him

anyways, thanks again for reading and responding

xxx

 

 

My son has difficulties eating too, to the extent he is severely underweight, he is so tall, but sooo thin its embarrassing as people often think I just dont feed him, obvously I try but he is soo selective and resistant to change of foods, dont forget eating is a very sensory, textures, tastes, tempretures and then you have the cutelry and plates, when J was younger food had to be on seperate plates and he had particular plates too so it was very demanding, we have made progress to where he will eat on one plate now and he has increased his selection as it was getting so serious he was barely eating.

 

I too have told J he was a naughty boy, he has had many other adults treat him poorly due to not understanding his needs and it is distressing looking back but I didnt know then and many adults would suggests all sort of conventional punishments but it too didnt work from sitting on the step to sending him to his room, these just didnt work.

 

I began to read books on challenging behaviour, sensory intregration disorder recommended by darky and others and then I started to put in place a multi sensory aproach to his behaviour, he now has a sensory room, seperate from his bedroom and I dont no longer call him a naughty boy.

 

I attended courses on parenting and modified them by using pictures and then later I bought widgits a communication PC software.

 

I also attended HELP and other NAS courses.

 

I understand the guilt but that wont help either of you, now you have an awareness of his behaviours you can begin to change the way we respond, as I have learnt that is a big factor on how we aproach behaviour.

 

So just work from today, and move forward.

 

JsMumxxxx

 

Edited November 25, 2009 by JsMum

[tired and fed up]

Hello Cardiffmum

I have just recently joined the network too, hope that you get there with the school.

I have had similiar negative issues with my little girl, school punish her because she fidgets and "mutters" alot even though she's not directing it anyone. It's hard when you have to explain to someone the negative side of your child but then you end the conversation by saying how lovely your child is, I think sometimes people see a parent as being deluded lol

 

I have been told "off the record" that they suspect my little one is on the high end of the spectrum or has "traits" can't wait to get through the process so that we can finally start dealing with the important bits

[parentsofdisabledchildren]

Welcome to the forum

[Martin Howe]

Hello and welcome to the forum

 

Speaking as an AS child (many years ago) who would routinely disobey parents due to honestly thinking that with "Vulcan Logic" he knew better than they did, I'd say the AS child has a pathological drive to do the right thing and especially not to let people "wrong" them, regardless of who or what ever is doing it. Subtleties such as respect for unofficial authority figures such as parents, the idea that experience isn't just a word parents use to beat children with, that (gasp!) adults are even RIGHT sometimes, are difficult enough for any child, but incomprehensible to the child with AS, if my childhood is anything to go by

 

Dunno if that helps, but it's worth pointing out that the bit about doing things even when they know they will (or might) be punished is perhaps one of the hardest things to understand about AS children.