Aspergers/ASD support thread

flippin36

Strapped wrote: »

Useful to know. We have been waiting for an assessment appointment for more than a year (refered last summer by GP, had initial brief apt with specialist registrar in Nov 2008) and just found out that it's likely to be next year before we are seen Fortunately, we have been able to get DS statemented and to access some help without a diagnosis, but it would still be helpful to "have it official" and find out if there is any more help available.

We were a year start to finish - frustrating I know.
Also, take note of what PasturesNew said, invaluable advice.

mattief

Just discovered this thread when searching for some sort of funding for AS support... very interesting contributions from all! wornoutmum - I feel like I'm reading our future!

Son is 4 (5 in Jan) & just started full days at the foundation unit of mainstream school, after half days in pre-foundation last year. It is getting difficult as he is now being very disruptive in 'group time' - though he is flourishing in 1-to-1 & starting to get more socialised at playtimes - and the class has a little extra help for part of the week. But essentially, there are 30 kids in the class & when they all sit together at the start & end of each session, he finds it difficult not to shout out, stamp feet etc to disrupt. Does not respond to authority at all & teachers are at a loss on how to deal with him. In fact he has a 'what if..' mentality & is really pushing at boundaries - which i try to think is a good thing as it shows he is happy & confident there! It is a shame as in other areas he is really doing well - it's just an inability to sit & pay attention for 15-20 mins within a large group. We have tried a reward system, but with little effect, and am now going to try negative consequences & offering coping strategies (He is obsessed with numbers, so I have suggested that when he feels like shouting out, he counts numbers in his head instead... we'll see how that pans out...)

Statementing in Oxfordshire is apparently notoriously difficult, but we have seen child psych & have diagnosis & so are starting on that road... We are even offering to fund some extra help for school directly, but it is unclear what their policy is on this... Would like to keep him in mainstream if possible, but now looking at other special schools - though fees are sky-high - or home ed.

Anyone in our area (or anywhere else) have any experience of this - and particularly on any sources of funding?

Thanks & best wishes to all

softwaremad

mattief wrote: »

Just discovered this thread when searching for some sort of funding for AS support... very interesting contributions from all! wornoutmum - I feel like I'm reading our future!

Son is 4 (5 in Jan) & just started full days at the foundation unit of mainstream school, after half days in pre-foundation last year. It is getting difficult as he is now being very disruptive in 'group time' - though he is flourishing in 1-to-1 & starting to get more socialised at playtimes - and the class has a little extra help for part of the week. But essentially, there are 30 kids in the class & when they all sit together at the start & end of each session, he finds it difficult not to shout out, stamp feet etc to disrupt. Does not respond to authority at all & teachers are at a loss on how to deal with him. In fact he has a 'what if..' mentality & is really pushing at boundaries - which i try to think is a good thing as it shows he is happy & confident there! It is a shame as in other areas he is really doing well - it's just an inability to sit & pay attention for 15-20 mins within a large group. We have tried a reward system, but with little effect, and am now going to try negative consequences & offering coping strategies (He is obsessed with numbers, so I have suggested that when he feels like shouting out, he counts numbers in his head instead... we'll see how that pans out...)

Statementing in Oxfordshire is apparently notoriously difficult, but we have seen child psych & have diagnosis & so are starting on that road... We are even offering to fund some extra help for school directly, but it is unclear what their policy is on this... Would like to keep him in mainstream if possible, but now looking at other special schools - though fees are sky-high - or home ed.

Anyone in our area (or anywhere else) have any experience of this - and particularly on any sources of funding?

Thanks & best wishes to all

The Lea are obliged to provide adequate education for children with special needs as with all other "normal" kids - however if your looking at special schools then they also pay for those two. you just have to be able to prove that the required school can provide something which the Locally funded school can not - for example a specific program of teaching etc.
fingers crossed for you all

Strapped

mattief wrote: »

Just discovered this thread when searching for some sort of funding for AS support... very interesting contributions from all! wornoutmum - I feel like I'm reading our future!

Son is 4 (5 in Jan) & just started full days at the foundation unit of mainstream school, after half days in pre-foundation last year. It is getting difficult as he is now being very disruptive in 'group time' - though he is flourishing in 1-to-1 & starting to get more socialised at playtimes - and the class has a little extra help for part of the week. But essentially, there are 30 kids in the class & when they all sit together at the start & end of each session, he finds it difficult not to shout out, stamp feet etc to disrupt. Does not respond to authority at all & teachers are at a loss on how to deal with him. In fact he has a 'what if..' mentality & is really pushing at boundaries - which i try to think is a good thing as it shows he is happy & confident there! It is a shame as in other areas he is really doing well - it's just an inability to sit & pay attention for 15-20 mins within a large group. We have tried a reward system, but with little effect, and am now going to try negative consequences & offering coping strategies (He is obsessed with numbers, so I have suggested that when he feels like shouting out, he counts numbers in his head instead... we'll see how that pans out...)

Statementing in Oxfordshire is apparently notoriously difficult, but we have seen child psych & have diagnosis & so are starting on that road... We are even offering to fund some extra help for school directly, but it is unclear what their policy is on this... Would like to keep him in mainstream if possible, but now looking at other special schools - though fees are sky-high - or home ed.

Anyone in our area (or anywhere else) have any experience of this - and particularly on any sources of funding?

Thanks & best wishes to all

Sounds exactly like DS at his age. He was just not able to do "circle time". It has taken about three years to get him to a point now where he is able to join in. So good news - it can be done. Bad news - it takes time and really needs a dedicated TA. DS was statemented last year - he got 0.8FTE 1:1 (max possible) + a meal time assistant - but was already taking up the class TA before that tbh. With the help of the County Autism team, the school introduced a "now and then" system whereby he would be shown a board with "now" and "then" headings. A picture of circle time would go under the "now", with a time - say 5 minutes - next to it, and he got to choose the "then" activity as a reward, from a selection of other productive things he could be doing eg reading, time on the computer, etc. His TA would sit behind him on the carpet to keep him from hitting/kicking the other kids (sounds terrible doesn't it) to make sure that he "achieved" his 5 minutes, and gradually over time she was able to move further away, and the time became longer. He still finds it difficult, but we had a meeting with his teacher and someone from the County Autism Team yesterday, who reported that he had that very morning sat (next to the teacher lol) patiently in circle time (without hitting/kicking/calling out) and taken his turn in talking about the activity they had just done. (Can I just say: so proud!)

blue_monkey_2

I just want to add something about 'carpet time' at school. DS had lots of problems but the school gave him a piece of matting which he weas given to sit on - by the end of the year (so it took 18 months) he was able to sit on the carpet without it.

Don't get me wrong - he is not perfect, but he is better than he was and it really helped. If your school will not get one for him then you get it and give it to them and tell them how to use it. And make sure they do!!

moo842

hi i hope you don't mind me popping in, but i need some help!
My son is 7, and we were first told of his suspected ASD by a health visitor 5 years ago. In june he was finally formally diagnosed. So it's been a long battle of is he isn't he. the main reason for this is his angel like behaviour at school. but anyway we are there now!
Now I'm a broken woman, they've taken eveything i have. I've never asked for help, we've worked our way through it all, and beleive me it hasn't been esay (well i'm sure you all understand that). But now i've had enough, i have two other children as well.
But i just can't get him to school anymore, he doesn't want to go, and refuses to walk, sometimes he just shouts, sometimes he just lies down and won't move, sometimes he is violent to me and his 5 year old brother.
So i contacted the LA and asked for help with transport, i know we don't live far (3/4 of a mile) so applied under him having special needs.
i got a letter this morning to say that they won't help as we don't live far enough away, and if we want to appeal we can do showing extenuating sp? circumstances, what the hell do they want i put in all his letters from the consultant, and a two A4 page letterfrom myself detailing a specific walk to school. I need this help so much but just have no fight left!
Sorry if it's jumbled but i'm sat here crying my heart out, should i just stop taking him??
The school is no help, theey don't accept his autism and think that i just can't control him!

notakid

Hi everyone.

Just to let you know there is light at the end of the tunnel. I'm really proud of my son and I've just posted this in the arms.

http://forums.moneysavingexpert.com/showthread.html?p=25451635#post25451635

Js_Other_Half

moo842 wrote: »

But i just can't get him to school anymore, he doesn't want to go, and refuses to walk, sometimes he just shouts, sometimes he just lies down and won't move, sometimes he is violent to me and his 5 year old brother.
So i contacted the LA and asked for help with transport, i know we don't live far (3/4 of a mile) so applied under him having special needs.
i got a letter this morning to say that they won't help as we don't live far enough away, and if we want to appeal we can do showing extenuating sp? circumstances, what the hell do they want i put in all his letters from the consultant, and a two A4 page letterfrom myself detailing a specific walk to school. I need this help so much but just have no fight left!
Sorry if it's jumbled but i'm sat here crying my heart out, should i just stop taking him??
The school is no help, theey don't accept his autism and think that i just can't control him!

Have you been in contact with parent partnership? http://www.parentpartnership.org.uk/

Does your child meet the criteria for your local social services disablity team? There are often clubs/respite etc which could give you some breathing space.

blue_monkey_2

I've been having the same trouble, I am dreading when he gets older as I literally have to drag him to school most days. There are some days when I just cannot face the fight. My son is also 'perfect' at school.

Have you tried the disabled children team at your local council? They might be able to point you in the right direction.

The only other thing might be to get a buggy, take him to school in that and ask his class teacher to meet you, say, 10 minutes before class starts and take him into the reception or something. That will give you time if he is not dressed to get him dressed and will show the teachers what you are dealing with.

What LEA do you come under?

softwaremad

moo842 wrote: »

hi i hope you don't mind me popping in, but i need some help!
My son is 7, and we were first told of his suspected ASD by a health visitor 5 years ago. In june he was finally formally diagnosed. So it's been a long battle of is he isn't he. the main reason for this is his angel like behaviour at school. but anyway we are there now!
Now I'm a broken woman, they've taken eveything i have. I've never asked for help, we've worked our way through it all, and beleive me it hasn't been esay (well i'm sure you all understand that). But now i've had enough, i have two other children as well.
But i just can't get him to school anymore, he doesn't want to go, and refuses to walk, sometimes he just shouts, sometimes he just lies down and won't move, sometimes he is violent to me and his 5 year old brother.
So i contacted the LA and asked for help with transport, i know we don't live far (3/4 of a mile) so applied under him having special needs.
i got a letter this morning to say that they won't help as we don't live far enough away, and if we want to appeal we can do showing extenuating sp? circumstances, what the hell do they want i put in all his letters from the consultant, and a two A4 page letterfrom myself detailing a specific walk to school. I need this help so much but just have no fight left!
Sorry if it's jumbled but i'm sat here crying my heart out, should i just stop taking him??
The school is no help, theey don't accept his autism and think that i just can't control him!

Don't despair mrs moo - they are legally obliged to provide transport for all children with special needs - if not that's discrimination as he has been diagnosed. the only reason they do not provide transport is when your child is in a school outside of local boundaries through parental preference. get onto social services asap - sounds like you and your ds need a break from each other - ring them tell them your having a nervous breakdown because of his behaviour & they'll be round like a shot trying to offer you all sorts of help as it's cheaper to keep child at home than take them into care!

tell them he's an angel for everyone except you (i know how this works only so well as my dd is awesome for everyone else and if after time she shows them her true colours i do a rain dance cos it proves that i am not going mad!)

Every family with a child with special needs especially when they have other "normal" children also deserves time out so that other children get their own time - it is the norm that the child with special needs is very demanding and detracts attention from the other children.

My dd used to plonk herself down on the road when fed up with walking also almost impossible to move her as she got bigger. they gave us a large special needs pushchair - she loved this as it was a little zone for her to curl up in away from the hustle & bustle of the world. Also sounds to me like something at school is not right for him - he's not a happy chappy for some reason. is he statemented? if not write to the statementing officer at the LEA offices and ask for one - through this process whatever is troubling him may pop out.

good luck -

chin up - dont forget its good to cry - as it stops the build up and eventual eruption of emotions which tends to get you banned from places like tesco (like me) as you lose it with anyone who gets in your way in the end as there is no one else to target!

sue