Aspergers/ASD support thread

lottylouj

i dont think the school have a lot of experience with asd children, ive been told not to say anything to the school so that isnt helping, there is a meeting involving the senco, pead,clinical phsyc next friday.
i dont know of any groups in my area but i havnt been given any type of information about anything yet.
ive just ordered myself a charger for my camcorder so hopefully if i have some proof her behaviour is real and im not making it up then they have to believe me.

i was told all this would be an easy process that would be over when the multi agency meeting was held, that has been and gone and i still feel like im in the dark about it all.

it just gets my back right up and its so difficult to stay calm with these people. there is autism already diagnosed in the family (my nephew).

right best get the weekend started.

thank you everyone

softwaremad

You don't have to show them the behaviour of your child at home! most teachers have no idea come to think of it even doctors dont have a clue - they read a bit about autism and understand what it is but do not or can not contemplate how the disability actually affects the child!

it is very commen with children with asd to compartmentalise their behaviours - so for every environment they go to they have a different behaviour pattern.

my dd used to have a link family for respite - they said she was an absolute angel and i thought i was a complete loon tune as she was really hard work at home and they didnt believe me. One day they brought her home and said that she had a tantrum and if she had another one with them thye wouldnt be able to have her anymore! i was doing cartwheels as hooray they had seen the other side that i had to deal with all the time! i wasnt a complete nutter!! result!

life is so strange when you have a child with asd you celebrate the weirdest and most stupid of things! i remember when she was 5 jumping up and down and laughing and clapping as she had managed to jump (normal kids do this when they are 2)

write a letter addressed to you statementing officer asking for a statement of your child it goes to the education department of your council. dont wait for them to do this for you - be proactive lol! if the teachers a witch - go over her head sort it out! its pointless you banging your head against a brick wall - the kids do enough of that for everyone!

rosie-marie

Js_Other_Half wrote: »

Some children do well with ear defenders?

http://www.ultimateear.com/product.htm

Thank you so much for this link. Have ordered Kidz Muffs and will let everyone know how we get on with them. Will order one for my daughter too for Cambridge Folk Festival as it gets a bit loud (shes not ASD). Brill!:T

rosie-marie

softwaremad wrote: »

You don't have to show them the behaviour of your child at home! most teachers have no idea come to think of it even doctors dont have a clue - they read a bit about autism and understand what it is but do not or can not contemplate how the disability actually affects the child!

it is very commen with children with asd to compartmentalise their behaviours - so for every environment they go to they have a different behaviour pattern.

my dd used to have a link family for respite - they said she was an absolute angel and i thought i was a complete loon tune as she was really hard work at home and they didnt believe me. One day they brought her home and said that she had a tantrum and if she had another one with them thye wouldnt be able to have her anymore! i was doing cartwheels as hooray they had seen the other side that i had to deal with all the time! i wasnt a complete nutter!! result!

life is so strange when you have a child with asd you celebrate the weirdest and most stupid of things! i remember when she was 5 jumping up and down and laughing and clapping as she had managed to jump (normal kids do this when they are 2)

write a letter addressed to you statementing officer asking for a statement of your child it goes to the education department of your council. dont wait for them to do this for you - be proactive lol! if the teachers a witch - go over her head sort it out! its pointless you banging your head against a brick wall - the kids do enough of that for everyone!

This is so true. We don't anything for granted anymore. I remember my little boy pointing to Cornflakes in the supermarket for the first time (he didn't point when he was little) and we all stood in the aisle cheering and clapping, I started crying and everyone was looking at us like we were completely loopy. LOL

softwaremad

Thats whi life with these kids is so special because we take very little for granted!

Strapped

lottylouj wrote: »

my dd behaviour in school is totally different from at home, the school dont believe what she is like because they say they havnt seen it.
she is isolated in school and has aditional needs they admit that but nothing more.
when she is home she is so stroppy, like a real jeckyll and hyde. it only takes the slightest thing to set her off and then the day is over before its begun.

her teacher is a useless and we have had various run ins , the school wont support a statement as they dont see the problems.

im beginning to doubt myself now and wondering if im the problem if she isnt bad in school.they try to give her work she cant do i know she must get frustrated. it feels like they only care about the high achiving kids.

has anyone else had this??

We're kinda the opposite way - DS has *ahem* very challenging behaviour at school but is much calmer at home. He is now statemented, but all they have done is to start to pay a STUDENT with no experience as far as I can tell, and so long as he is "not disturbing the rest of the class" they don't particularly care that he is not progressing himself. He is 7 and can't write, yet all agree he is one of the most intelligent in the class I've tried giving them stuff we're making some progress with at home (special marked out paper etc) but as far as I can tell, they just let him do whatever he wants - mostly playing on the computer away from the rest of the class.

Js_Other_Half

Reminder of some websites that may be of help for those of you struggling with education stuff:

Independent Panel for Special Education Advice
http://www.ipsea.org.uk/

Parent Partnership Services (PPS) are statutory services offering information advice and support to parents and carers of children and young people with special educational needs (SEN)
http://www.parentpartnership.org.uk/

The Advisory Centre for Education (ACE) is a national charity that provides advice and information to parents and carers on a wide range of school based issues including exclusion, admissions, special education needs, bullying and attendance.
http://www.ace-ed.org.uk/

looby-loo_2

lottylouj wrote: »

my dd behaviour in school is totally different from at home, the school dont believe what she is like because they say they havnt seen it.
she is isolated in school and has aditional needs they admit that but nothing more.
when she is home she is so stroppy, like a real jeckyll and hyde. it only takes the slightest thing to set her off and then the day is over before its begun.

her teacher is a useless and we have had various run ins , the school wont support a statement as they dont see the problems.

im beginning to doubt myself now and wondering if im the problem if she isnt bad in school.they try to give her work she cant do i know she must get frustrated. it feels like they only care about the high achiving kids.

has anyone else had this??

I really feel for you. I'm a SENCO and I hear this story so often - the child is a nightmare at home and a model student in school. I often wonder why? Could it be that they want to learn so they find it incredibly stressful to 'get it right' all the time at school? Home becomes a release for the tension they have had all day. School is so structured so they feel safe.

Sarahsaver

lottylou i have had YEARS of being not believed even down to a SENCO telling me that an 18 page report from the child psychologist consultant was 'hearsay'
I feel for you. would rampbe on for ages but got to go - babysaver needs entertaining;)
Best wishes.

lottylouj

the senco herself is ok(ish) but so young she should still be in nappies. she is also my sons class teacher so she sees ds every day who is flying with every subject.

at least come september dd will be in a new class with a new teacher.
i wish i knew about all dd problems 12 mths ago it would of made so much difference, but cant change it.
i have been told she is a very complex little girl with a lot of needs by the clinical phsyc. i could of told them that lol.

another question (sorry)
dd likes to go outside to play with other children around her age(9), but mentally she is years younger 4 or 5 yrs old, and she doesnt think the same way as them, she ends up coming in every few minutes in tears cause no one will play with her or they are being nasty to her then she wants to go back out and the same thing happens again.. she is a super sensitive child at times and so much younger than them mentally, she is so isolated.
i cant always keep her in as its excluding her from playing, but she keeps getting upset, she also makes life hell. but i cant say to the other kids she is 'different' cause that will make things harder for her.
ive tried telling the parents dd has autism but all i get is 'oh poor you/her, well she doesnt look autistic, or dont worry she will grow out of it'.

these are the times i wish i had a partner around so i could take a break for 10 mins!!