Aspergers/ASD support thread

LilySue

Yes, all our sons' consultant visits are copied and sent to our GP as well, so although she had never seen either of them for three years, when we did turn up for an appointment last year she at least had a lot of notes for them.

My middle son, who has no statement but a diagnosis of ADHD/dyspraxia has had rough 2-3 weeks at school which is why I haven't been online much.

Fortunately we had parents evening last week and we took the opportunity to fill in his form teacher on just how unhappy he is socially, she was shocked as he is doing so well academically

Upside of it is that he is now able to use his form room at lunch time to get away from people if he needs too...and he also has told me that the reason he is always so desperately hungry is that he has been giving his lunch away for the last two years

I could have kicked myself for not figuring this one out, but at least I know now and can do something about it. We had a chat and he told me that giving his lunch away is the only way he can keep friends, explained to him that that is not real friendship, and I have now supplied him with muesli bars to keep in his pocket and nibble on instead of the traditional packed lunch box.

I think that half of his problem is that he seems so able, top sets in everything, he's the good looking one in our family, and he has charm, so that teachers look at him and have no idea that inside he is really struggling.
If they could see him ranting and crying after school taking all his stress out on me and his younger brother it would be a very different situation.

Sorry to run on, I actually think we have turned the corner on this, but it's been on my mind a lot lately.

Snaggles

Ohh LilySue, how upsetting that must have been - I nearly cried reading your post.

You could be describing my son too - he's angelic looking, extremely intelligent, and often very funny, and people do sometimes think I am lying about, or exaggerating, the very real difficulties he has every single day.

I hope you're coping okay and I hope he is now managing to eat his own food.

Sarahsaver

OMG LilySue your DS sounds just like mine. My DS wants to take carrots for his friends!!! My ds too is very bright verbally, a little chatterbiox, very interesting, but struggles with the emotional/social aspect of school, and brings his upset home.
We had a neuropsychological assessment today he got to play with loads of interesting equipment whilst more professional people ummed and aah'ed about him.
i could see - he cannot balance too well, cannot move his hands without lokoing at them, and he has a tic in one eye, was terrified to put vegetable oil on his hands but had no qualms about covering an adult stranger in talcum powder!
I had for ages ppl thinking he MUST be able to read/write better bcos he is so articulate. It is so frustrating but at least now the IQ test has been done so I can give the school some concrete evidence.
Thanks for the heads up on GPs i will check just to make sure mine has been informed of everything. Not been to see him re. ds behaviour ever since he said'all kids have tantrums he is just being a bit naughty, he will grow out of it'.

LilySue

Snaggles and Sarahsaver, thanks for your support, and yes we all seem to be coping better this week:)

We did take middle son to see the paediatric consultant who treats our youngest son ( who has autism) before Christmas and she feels the ball is very much in our court as to whether to go for more neuropsychological assessments....she doesn't want to do them as she feels his self esteem is so fragile that it won't help him at the moment...me and my husband are very torn on this.

sarah1975uk

Hi hope everyone is ok. George finally got his DLA awarded today got lower rate mobility and higher rate personal care. Is there anything i can do to get the mobility inceased because of difficulties i have when out of the house? or anything else we are entitled too now he gets dla?

shazrobo

hi sarah great news re. the dla, my two sons get the same rates also, you should also get an increase in ctc think its called the disability premium that they add on

Savvy_Sue

sarah1975uk wrote: »

Hi hope everyone is ok. George finally got his DLA awarded today got lower rate mobility and higher rate personal care. Is there anything i can do to get the mobility inceased because of difficulties i have when out of the house? or anything else we are entitled too now he gets dla?

Might be worth asking that specific question on the Benefits board, or seeing if there's any useful links in their stickies. But you may find that mobility would only be increased if he can't walk any distance, rather than if he CAN walk but it's a nightmare getting him where you want him to go.

Having said that, I think a friend was getting the higher rate which she used to get a mobility car. Her child can walk, but cannot easily be kept safe while doing so.

tilly's_mum

sarah1975uk wrote: »

Hi hope everyone is ok. George finally got his DLA awarded today got lower rate mobility and higher rate personal care. Is there anything i can do to get the mobility inceased because of difficulties i have when out of the house? or anything else we are entitled too now he gets dla?

If you earn less than £95 a week you can claim Carers Allowance.

My daughter gets high rate mobility - she can walk indoors but outside has no sense of danger, will throw herself on the floor and we have to keep tight hold of her as she will run off.

sarah1975uk

tilly's_mum wrote: »

If you earn less than £95 a week you can claim Carers Allowance.

My daughter gets high rate mobility - she can walk indoors but outside has no sense of danger, will throw herself on the floor and we have to keep tight hold of her as she will run off.

How do i get them to look at the claim again to amend award of the Mobility to higher rate? as my son is the same throws himself on the floor and have to keep hold of him and the fact he runs off and has no sense of danger.

tilly's_mum

Ring the DLA office and ask for them to look at your claim again. Do you have a blue badge? If not contact your local social services dept - you don't need to have DLA mobility to get one but its easier.