Aspergers/ASD support thread

blue_monkey_2

Not been on for ages, hi everyone.

I'd be interested to see how the holiday was advertised 3onitsway, can you pm me and I'll take a look.

For anyone having any troubles at all, look at The Children's Legal Centre: http://www.childrenslegalcentre.com/

starnight_2

That sounds extremely frustrating 3onitsway, how many ways have you tried to contact them?






Update on my DS: Summer always seems to be difficult, and this one is no different. So far I have had to take 4 days off work, that's an average of once a week. He has also wet the bed again, after me taking the plastic sheet off because he had been so good. *sighs* He has went back to taking out all his toys and lining them up. Thankfully it seems to be getting slowly better, my mother is taking him on hols for the next few days which I hope will be good for him, my only worry is he was beginning to settle. On the other hand, we have another appointment for CAHMS, next week, I honestly did't expect them to get back to us so quick, so I'm looking forward to the meeting. Hopefully he might say more than two words this time. XD

3onitsway

starnight wrote: »

That sounds extremely frustrating 3onitsway, how many ways have you tried to contact them?






Update on my DS: Summer always seems to be difficult, and this one is no different. So far I have had to take 4 days off work, that's an average of once a week. He has also wet the bed again, after me taking the plastic sheet off because he had been so good. *sighs* He has went back to taking out all his toys and lining them up. Thankfully it seems to be getting slowly better, my mother is taking him on hols for the next few days which I hope will be good for him, my only worry is he was beginning to settle. On the other hand, we have another appointment for CAHMS, next week, I honestly did't expect them to get back to us so quick, so I'm looking forward to the meeting. Hopefully he might say more than two words this time. XD

I've tried email to two head office addresses and phone calls, all to no avail. I've today (with the help of my lovely MSE friends, written an official letter of complaint, cc'd to my MP and the National Autistic Society.


To top my sh!tty week, today i've had the DLA renewal decision, and care & mobility have been reduced despite J's needs being much more than they were 5 years ago! :mad: The appeal form is on its way to me.
Has anyone else had this situation?


Next year, i'm cancelling July from my calender.
So far this month; My sister has been dumped by her perfect boyfriend, then she lost her job due to company 'restructuring'. Then OH bumped my car, we had the holiday from hell and today our DLA has been reduced.

There's only 3 days left of July, what else can you throw at me.

tired_mum

Hello all
I am looking for some advice my son of 15 has been diagnosed with Aspergers and I would like to know what he is entitled to for his education and financially he already has a statement but this is for ADHD we do not recieve any benefits

Indie_Kid

tired_mum wrote: »

Hello all
I am looking for some advice my son of 15 has been diagnosed with Aspergers and I would like to know what he is entitled to for his education and financially he already has a statement but this is for ADHD we do not recieve any benefits

Anything he's entitled to (such as exam concessions - extra time, rest breaks or his own room) is down to the discression of the school.

If he goes to uni, then the funding is much better.

You can caim DLA (disability living allowance) if he has care and /or mobility needs that are greater than that of the average 15 year old.

Savvy_Sue

tired_mum wrote: »

Hello all
I am looking for some advice my son of 15 has been diagnosed with Aspergers and I would like to know what he is entitled to for his education and financially he already has a statement but this is for ADHD we do not recieve any benefits

sh1305 wrote: »

Anything he's entitled to (such as exam concessions - extra time, rest breaks or his own room) is down to the discression of the school.

I found there was some useful information on the NAS site - if you search there for 'exam help' then you should pick up several links and can work out what might be most appropriate for your son. I printed some pages off for school when there was a last minute flap about DS1.

It would be worth getting on to this as soon as he goes back in September rather than waiting until the Easter before his GCSEs! (Did I mention a last minute flap?)

sh1305 wrote: »

If he goes to uni, then the funding is much better.

True, and having an up to date 'diagnosis' or assessment will help in accessing it. We didn't feel DS1 needed help initially, but then we had another 'flap' when it was thought he would benefit from a mentor at Uni, because he didn't have a sufficiently recent or thorough 'diagnosis' or assessment to get the Disabled Students Grant (via the LEA).

sh1305 wrote: »

You can caim DLA (disability living allowance) if he has care and /or mobility needs that are greater than that of the average 15 year old.

And for that, it doesn't matter what 'labels' have been applied: it's whether or not he needs more care than an 'average' 15 year old, and the reasons for that could be the ADHD or the Asperger's or some other reason. You'd be well advised to get proper help with the forms, however, because it probably won't be easy. Also I think at 16 they start to expect the person to claim in their own right, unless they are clearly incapable of doing so, so be ready for that one!

wornoutmumoftwo

To top my sh!tty week, today i've had the DLA renewal decision, and care & mobility have been reduced despite J's needs being much more than they were 5 years ago! :mad: The appeal form is on its way to me.
Has anyone else had this situation?

I had DS dla refused on renewal, despite his care needs being the same as the previous two years when they did pay it, I also know someone who went from HM and MC to nothing on renewal, thought it might be a new procedure?

Had almost a years wait (51 weeks since claim received) for tribunal, but got my date for it today 29th Sept. I have extra evidence now as had DS diagnosed and letter from psychologist, so fingers crossed.

edgex

rammy007 wrote: »

Can anyone tell me how to get an 18 year old a diagnosis of aspergers ?Obviously the the first thing is a visit to our GP,but what happens next who actually gives a diagnosis,advice would be appreciated.Thanks.

sh1305 wrote: »

I'm a little bit older (21) and wondering the same thing. I hav been warned it can take anything up to 2 years to get diagnosed.

GP, request a referral, but have some evidence

blue_monkey_2

I would definately speak to them, also before this you need to go and see your doctor and ask to be referred to the Child Develpment Centre so you can get some help. There is a long wait - usually 6-12 months before your 1st appointment, the chool will not be able to refer you. The school can give extra help at school but it is nothing to do with the paediatrician or the doctors your son needs to see.

You must go to your GP, who will then in turn refer you. Ask for a copy of the referral letter so you can be sure it has been done, the school should help AFTER you have been to the CDC - my sons teachers have to go to the first appointment. The school picking it up is just something else you can go to the doctors with. This is what I had to do after the school picked it up, they did not refer or otherwise, and like you I had already discussed my fears with the school.

Mandles

pegasus78 wrote: »

Little bit of advice needed,my son has just turned 3.Have had vague concerns for about a year.

Has always been fascinated with cars and wheels does the lining up thing and if it's not right has a tantrum.

Has not sleep properly for about 3 months even when he is really tired does not seem able 2 unwind.

Has terrible fear of people to the extent that he rolls himself into a ball and covers his face with his hands

We never get cuddles unless bedtimes and that seems forced

Tends to play along side children rather than with them.

Starts nursery school in september don't know weather to speak to them or wait and see if they pick up on unusual behaviour.

Everything you described is the exact same as my child. My DS also got really angry and used to attack me daily and was incredibly clever at escaping or getting into any cupboard or opening any door despite locks.

Due to circumstances his nursery came to me saying they thought he had ASD. Ideally you should go to them and warn them first and ask if they could observe him and see what they think. As blue monkey said you should see your GP too. They may then get the "earlybird" team or something like that i think depending on area. Things then should really move for you then.My son was later diagnosed with Aspergers.

In case you are upset about his behaviour, My child is 2 years older than yours and although he is still different he is totally adorable. Diet and cutting out cows milk, sugar, cheese and chocolate has helped (just what i personally have chosen to do but recommended by a homeopath). He is now very cuddly which used to break my heart that he would not cuddle ever, he is happy, funny and has friends and i see great potential in him as he is very able physically to do most things. Everyone loves him and even school and nursery have said how although he seems a very naughty boy as he only does what he wants when he wants, he is a child that you can't help but really love. So to have a "special child" can really be rewarding as they really are truly special