Aspergers Syndrome 100 years Old

[Malika]

Hi

 

This is why I like Tony Atwood approach saying that children with AS have pb only when they are forced to socialy mixed and would not have so much pb if allowed more time off in order to give them strengh for their next time "in" the society.

 

Where my son goes to school he is never allowed to have some time off on his own and it is then that big pb arised which could be avoided if he would be left alone for may be 30 mns when it is clear that he is not coping well, the fact that the staff is ignorant of As and ASD makes it as well complexe for them to understand when he needs a break.

Requesting a place where our children could get some time off in school seems to me a kind of urgency and a first step in recognising that they function differently and some adjustments need to be done.

I must say that even for NT children the pressure of school day having to be in a big group 6/7 hours a day certainly does not help their behaviour.

 

Malika.

[call me jaded]

Malika

 

Have a look at the Good Practice Guidance link on the Education forum. Time out space is a recommendation!

[Zemanski]

that is the best change we've managed to get school to make for Com - he was doing 14 subjects and only had social times for breaks.

 

now he has 2 hours week 1-1 study time and 2 hours life skills, both of which are relaxed and peaceful and the activities are focused but not demanding; like going to compare prices of computer equipment down the road which entails a bit of practicing to cross the road, a half mile potter down a busy but quite pleasant road, a potter round a shop he likes and back to school all the while chatting to his LSA. Last week he told me this was by far the best bit of school!

It doesn't sound much on paper but what he is getting is space to breath, good quality social interaction with someone he enjoys being with and a good bit of exercise.

 

the difference it makes to his well-being is enormous.

 

the new EP report now states that it is vital for Com to have this time off and also for him to be able to remove himself from situations with a prearranged space to go to - brilliant

 

when the new unit opens in Jan that will be the place he goes to, for the moment it is the SEN room, but in 2008 they will have a newly built unit with a section that has been designated specifically as an 'oasis of calm' for AS kids in the school which will include not just teaching space but a coffee lounge and a quiet room.

 

we live in hope

 

Zemanski

[Yorkie]

Zemanski, your school sounds like the most understanding I have ever heard of...... and I'm sure thats down to you as parents......

 

Aftr speaking to a number of parents with ASD kids, we all seem to be struggling against the teaching staff, who mainly have good intentions, but seem adamant that our kids 'will conform'and 'act like NT kids' in the long run...

 

This makes my blood boil............

 

My little fella has recently bitten 2 kids at school due to frustration, he was trying to take himself away from a situation he couldnt cope with, the only safe haven was behind some shelters the kids were forbidden to go.... and when a kid tried to help and get him out before he got into trouble, he lashed out when the kid tried to drag him out......

 

Trying to get the staff at my lads school to undertstand that he needs a safe place to go for 'time out' is ###### impossible. THEY feel he doesnt need it, HE cant converse in such a way that explain his feelings, an I'M just a Mum who knows nothing....apparently..... if he' not lashing out, he's ok.....thats their opinon, but when he is lashing out, it cant possibly be sensory issues.....

 

Ignorance is bliss..................or so I'm told

[Malika]

Hi Zemanski, yorkie, call me jaded.

 

My son school is definitly not like your son's one Zemanski and more like yorkie son's one.

First of all the EP who assessed H is of the old school we were talking about. Her report made me lost my appeal to the SENDIST even if the IPSEA rapresentative thought we had a good case the sendist say that they rather like giving consideration to the EP report than to the medical team report .

 

The EP just develope the idea that my son had pb socialising because he was not 15 mn in advance on the playground every day, then that he had language problem because english is not my mother tongue, and that he is clumbsy because he does not have enough activity after school. All my fault for being such a inadequate mother. This EP is the senior EP and seems to be untouchable even if I heard many comment from professional who would be very happy to see her gone.

 

As for the school they are trying a bit harder but every time I ask for H to have a place to go to on his own their reply is just "for safety reason we cannot do it"

Beside now they are building a new school and it is a big mess as all the infant school is going to move on prefabricated class room set up on the junior playground, and they are going to establish different playing time. It will take nearly 2 years for the work to be completed, by then H will nearly be in high school.

 

I feel so bad for my son as I feel that I do not do enough for him, on the top of this the OT report says that sensory motor integration pb were not observed even if he was not tested for it, and I know he has plenty but the OT did not seem to know anything about ASD children.

Unfortunatly I live in a Borough where a coucilor went to high court to challenge a decision of bad rating from an audit comission the borough lost �350.000 on this one, but anytime you ask for anykind of support the answer is sorry no founding.

 

If any of you have some advice on this please I need plenty as I do not know what I should do next.

Without mentionning that they refuse my DLA because the school says that h was not a pb at school. I have spoken to the head many times but he is all busy with the new project and not really interested, I have as well talk to other parents who had the same kind of problems in the past, the only improvement this year is H getting more support in the class room and a more understanding teacher.

 

Thank you so much Call me Jaded but the fact is that they are recommendations not laws so there are no enforcement it is still up to the school and it depends as well of the LEA policy in considering children with ASD.

 

Malika.

[Zemanski]

LEAs do not encourage schools to use the guidelines - it would be too expensive - and most schools are not even aware they exist

 

you could try giving the head and senco copies! - available as downloads or they can be ordered from the DFES publications via the internet

 

you could also look at the Disability Rights Commission code of practice for schools - the school is required to make reasonable adjustments to meet the needs of disabled children and anyone with an ASD diagnosis is legally disabled.

 

the school Com is at has been dreadful.

They have done Com serious and measurable damage.

we have had a 2 year battle to get Com's provision.

we have had to threaten legal action, and tribunal because they were neither making adjustments -specifically in the application of the behaviour policy - nor dealing with bullying resulting in trying to exclude Com for hitting one of the boys after 2 years of assaults and provocation (all reported).

 

we do have an excellent advisor and a cooperative EP who have been instrumental in getting the school to cooperate and they have both done ASD training with most staff (including all senior management) this year. But we still had to report the situation to the governors who instigated an investigation because the school had acted illegally in meeting his statement and the LEA, and both PP and IPSEA have been involved.

 

There are still problems and the school's attitude is hostile, they resent what they have been forced to do for Com and they resent the investigation, but they have acted and it is working.

 

unfortunately they are not yet generalising the provision - do not expect the same for other children without a serious battle.

This is the next step and now I'm supporting the advisor, and advising parents how to go about sorting out their children's provision in the school - but it's case by case until we can convince them that it is much easier and cheaper in the long run to establish an ASD protocol.

 

keep a diary - note all incidents and contacts with school, also all actions by school in terms of increased/decreased provision.

do everything by letter or email and, if you keep the diary in the outlook express calendar, attach those documents so you can see exactly what you raised with school and when.

 

this gives you the evidence you need to fight with - you can see patterns developing in things like meltdowns or stress related illness that can be used to persuade schools, the joy of outlook is you can just print out a section and hand it over, all labelled with different colours - very impressive!

 

good luck

 

Zemanski

[Zemanski]

by the way, the unit provision coming in 2008 is modelled on 'the resource' in sheffield

 

 

http://www.jkp.com/catalogue/book.php/isbn/1-85302-986-6

 

Zemanski

Edited October 27, 2005 by Zemanski

[call me jaded]

Malika

 

It's cases like your that really make me want to take up advocacy. How frustrating for you to be totally ignored in this way.

 

Keep strong!

[Canopus]

The EP just develope the idea that my son had pb socialising because he was not 15 mn in advance on the playground every day, then that he had language problem because english is not my mother tongue, and that he is clumbsy because he does not have enough activity after school. All my fault for being such a inadequate mother. This EP is the senior EP and seems to be untouchable even if I heard many comment from professional who would be very happy to see her gone.

 

History really does repeat itself. My EP came out with very similar comments even though it was plainly evident that they were baseless and unfounded. Some EPs really think they are second only to God when it comes to making arrangements for SEN.

[TuX]

Re.Aspergers' autism.

I usually always use that term instead of Aspergers Syndrome,I don't think it did us any favours by naming it differently,there's always the person who says, "aspergers? that's mild isn't it,you'll do well in life,get a job,a house" etc.

[Canopus]

I had difficulties coming to terms with AS as a varient of autism, and this was highlighted on a previous post. Everyone else claimed that AS is a varient of autism rather than a condition in its own right so I suppose I lost the argument. Perhaps I don't really understand what autism is in general or I am thinking along the lines of old outdated theories of autism.

[Malika]

Hi Zemanski , Call me jaded and Canopusand thanks.

 

Thanks Zamanski I will take your advice and start a diary it will help me as well to focus on what the problems are their recurence and intensity.

My son does not have a statement and the appeal I lost was just about my request for a statutory assessment. The medical team put in the report that they think he should be considered for a statemant but the LEA couldn't care less about the recomendation the most damaging in fact has been the EP report I thought to complain to the BPS but I don't know if this would help In any case the EP has been working there for ages and is virtualy impossible to remove she is in a senior position as well and probably having her thumbs on everybody around her ( I have heard many stories from other unfortunate parents one was about a child with dyslexia who had 7 years delay in his reading and writing but that EP just insisted that it was because the mother was foreign even if the father was English and only English was spoken at home. They eventualy went to court and win but they had to pay for a private assessment)

I have put some words of complain in my reason for appealing against the EP report but I really suspect some pressure behind the curtain as it was very clear during the hearing that H needs were not assessed properly in fact the EP couldn't be bothered to come for the appeal as she knew the result already.

You are right Canopus this is my impression with that EP she really think she is all powerful and can do what ever she likes unchallenged she must know the complete word of EP and SEN people May be I should complain to the BPS.

 

Call me Jaded believe me if you take up advocacy you surely will get very busy. What about working with the IPSEA??

 

Thanks again.

 

Malika.