Aspergers/ASD support thread

Minniethemoocher

Meant to say, sorry to barge the thread!

Tinker_Bell_4

I was going start a thread but thought it be best to ask here as plenty of people here posting up.
My son who is almost 9 as finally had diagnosis for autism,just this past few mths,they been very reluctant ( the paed ) to give this diagnosis as in past they said there isn't enough to point that he has autism.Before his 3rd B'day I told them I thought he was autistic but just slightly.I presume it is only slightly as they took so long to get him to be seen by eveyone for them to all make up their minds,only last year the diagnosis process started proper.
Currently attends a mainstream school but now there is talk of statement and the school are recommending a school for autistic children. He is high functioning autism as far as I can see,although the paed has not given us anymore specific level / type on spectrum. He doesn't have any learning problems and if anything is above is age on quite a few aspects of education.
I'm aware how the statement process works as read many websites and been given out info by parents in partnership.Currently they been given the go ahead to proceed with statement,I imagine they start after Easter now and know it can take upto 26wks.I know I will be able to get my opinions across too and have my say - for whatever it's worth.
My son's problems at school mainly come about because of bullying and this what caused an incident last week,now cos of this incident they all of a sudden been hasty to get him statemented.I feel they want rid of him asap.He's been there since reception now.
How easy is it get to a statement ? Then if they LA decide to statement him,then I'm hoping they keep him in mainstream education. I've heard it's very hard to get a statement and well if they do,how likely is they going stick him non mainstream. As I said it's took all this time to get a diagnosis and they felt in past he wasn't autistic,so surely he must be on lower end.Therefore should be able to cope in mainstream with a statament of educational needs.
What are people's views here about if it's easy or hard to get statement.

lottylouj

my dd (9) has epilepsy, learning disability and pretty sure she is autistic (meeting to decide on wednesday) i have tried to get a statement for her but it refused in the 1st instance as they said alough she has needs her needs are not severe enough for a statement. i had a letter of support from the dr at the hospital but it didnt make any difference. the parent partnership helped me with the letters.

in my opinion they are nearly impossible to get, i suppose it depends on your local LA and funding and who supports the statement.
if my dd is diagnosed ASD i will be appealing the decision and trying to send her to a school which be able to cater better to her needs.

good luck, i hope it works out the best for you and your ds.

Savvy_Sue

I can't say how easy or hard it is to get a statement, I'd say it varied from one LEA to another. BUT it is just a statement of the child's needs and - most importantly - what will be done to meet them. It's not a diagnosis. If the child has a diagnosis, that may be included, but the diagnosis is incidental to the child's NEEDS. For example, a diagnosis of ASD doesn't tell you what the child's needs are: they can vary very widely, depending on the child's language skills and response to group situations.

Also a school may meet a child's needs without a statement in place. Again, schools vary as to whether they want to do this or not. If there is a statement, then the LEA is supposed to pay extra to cover the child's needs. Even without a statement, there should be some money within the school's budget for 'special needs'.

Obviously a child who needs 1:1 support at all times is going to cost a school a lot of money, so the school will find it hard to fund this within the general 'pot' of SN funding.

A statement may or may not name a particular school - if the LEA feels that the child's needs can be met within mainstream with additional help then they might just say "1:1 help for x hours per day". As a parent you can push for what you feel is appropriate, which may be remaining within mainstream but with the help that's needed in place. Equally the LEA may want to keep the child in mainstream while you as parent think "This is never going to work."

The key thing is that the statement says what you need it to: if it doesn't you can appeal. But they can be sneaky, saying as little as possible and then when the child doesn't get the help they should say "but it meets the statement".

shazrobo

i have found with my twin sons, one got a statement at an early age, around 7yrs, the other didnt get one til he was 11yrs and had started high school. both boys have the same problems, and both are now at special schools, as mainstream failed to meet their needs

Tinker_Bell_4

I think the school can't be bothered,think they be laying it on thick.It be easier to get rid of him then the others who bother him at times.I agree he needs a statement of needs, but it's more so that he is watched more to ensure noone else is bullying him. This would be every child's right anyway.

Mandles

Thanks so much for all your help everyone (especially blue monkey). I have just recieved a statement for ds and also today i have just recieved diability benefit and got higher rate so £600 in my account this week....i nearly fell over when i read that! So everything i wanted really . That will really help.

softwaremad

Re Statementing -

Do your homework! watch everything they do - LEA's can be devious creatures!

Some LEA's will issue statements straight away some will issue Notes in Lieu which are treated like a statement however they are not legally obliged to provide the requirements as noted in the Note in Lieu

You need to contact other parents with statements to establish how they should be laid out and the sort of specifics you are after!

Most importantly if you want your child to stay in mainstream you need to check that the school he is in can provide everything they say he needs! so if they cant provide sensory rooms then the LEA will be looking at another school for him/her!

I went on a course last year which was free for parents & carers provided by the parent partnership! it was amazing the amount that i learnt about the process and how much we had been fobbed off with missing paperwork that they are legally obliged to create!

With regard my local LEA i discover with each statement that they are a little wooly on statistics and when the fog in my brain clears and i try to sort out something for my DD the statement is not specific enough.
Eg

i wanted my DD to attend a school that utilised sports to reduce aggression and frustration - this school made the kids run around the base (beautiful settings) to get rid of their stress (New method of thinking here) so its sort of like a boot camp for kids with ASD that teaches them to live in our world rather than bending our world to accept them as they are! The lea didnt want to pay so in the statement they put daily exercise program - now i have dug deeper this is apparently in her present school break time exercise i.e. running around the yard!

How gutted am i that they have pulled yet another flanker! oh well we live and learn eh!

feel free to contact me if you need help in any way! its a huge daunting process as when a child is diagnosed there is just too much information and its a lot to take on board so help should be taken wherever you can get it from!

as time passes you will be able to think a little more clearly and strive for the best for your kids! GL

[EMAIL="sue.prior@talktalk.net"]
[/EMAIL]

softwaremad

Oh boy i remember those days with DD making fabulous coloured mixtures out of all the stuff in the bathroom - Was gutted when i went to wash my hair to realise it was all four bottles of shampoo that had created it!

yes its frustrating - is it bad that i got used to it and now i look back with melancholy towards those moments! we are going through a long drawn out DVD broken phase - i am a pro now in fixing electrical equipment DD is a poster

i buy a dvd player from asda £14 remove 5 screws before installing it leaving only the middle one in the front - this way i can flip tha back up and fish out the papers/ toys or numerous dvd's in the drive ( my best catch was 10 DVD's in one player)

Do you get any respite services for your children ? as you should be getting help which really makes the holidays a little easier to bear! i wanted a school in England (we are in south wales) as english holidays are a little out of sync with ours and we would have had one week each holiday to utilise movies pools bowling alleys etc! Tight baskets wouldnt pay so we are stuck with local ish dump who has 6 weeks summer holidays! yeah they love autism do everything to help NOT

they understand dont they! course they do they read a book!

Muppets the lot of them

Enjoy your kids - when they strop out leave them too it! theres a lot to be said for an easy life at times!

Crossroads charity helps with sitters so you can do your shopping! Social Care Workers can take the kids out for 2 - 4 hours a fortnight! Respite care for those precious overnight stays so you can go out (more realistically chill out do the cleaning in one go)

Social services will help if not demand they do put your foot down! it would cost them £1k per week to look after each child! give them that as an option and they will drop tools to help you out!

take care!

seven-day-weekend

Just to let you all know that my son and his girlfriend are now in touch with ASpire (see link below) - she has been referred there and they will help her in employment and other matters and will also help her appeal her DLA award if it is refused.

Thought it might be useful to those whose ASD children are moving towards adulthood:

http://www.autismwestmidlands.org.uk/aspire.html