What support do you get?

[melly]

I wondered if people would mind telling me what services you are accessing for help with young ASD children (my little one is 3) and what area they help with.

 

My son is at a specialist nursery and we have access to the speech and language therapist there (very pleased with her) and also a clinical psychologist (help is a bit patchy as she is in on the days my son isn't). I read a lot about people using the CAMHS (?) team and OT's but I am not sure if they would be useful for us.

 

I am starting to think towards the summer hols, a bit keen I know, but I am due to have another wee person at the beginning of august and I know this is going to be a rough time for the family. Especially tough for the little man to get used to the idea of being a big brother. I just thought if there was more help/advice/care services available it would be good to try and start accessing them now before I loose sight of my feet!

 

Thanks all

 

Melly

[call me jaded]

I've had three more children since my ASD boy. In total I've had about two weeks worth of LA funded playscheme, one week of which was during the summer holidays after my daughter had been born (end of June birthday). I found another playscheme run by parents and booked my boy in a couple of days a week, which saved my sanity.

 

Never had contact with SS or CAMHS. We had four sessions of OT when he was 9 and that was only because I waved his statement.

 

I don't think you're doing too badly. You might want to explore 'disability friendly' outings - sensory rooms and the like, which will automatically be baby-friendly. These were a very stree-free way of spending a day. I can suggest a few - I'll start a West London post later. NAS Surrey branch is HUGE. They do loads of things. http://www.mugsy.org/

Edited February 27, 2006 by call me jaded

[melly]

thanks Jaded

 

any one else?

 

melly

[pumpkinpie]

There isnt much out there but have you heard of direct payments, someoneI knwo recieves it so she can pay for a cleaner, someone to do the ironing and a bit of time to her self each week. It very much depends on the areas attitude where you live.

[jen]

direct payments are dependent on your income. You can use the money for someone to take your child our. Babysitters etc what ever will benefit you and your child. My friend gets 2 hours a week and uses this in a variety of ways

 

Jen

[melly]

Thanks Jen and Pumkinpie,

 

I'll look into the Direct Payments, tho if its income dependant we don't usually do well - my hubby earns more than most of the thresholds, but not enough for us to be well off!

 

I think I may have made my inital posting sound a bit like I am after extras just for me, (which would be nice) but I was more thinking of the services that the children can access. I just come across some people that get extra S and L for example, and I don't know if its because they pay for these extras, of if there are other services available that we don't know about.

 

Thanks again

 

Melly

[lil_me]

As far as I'm aware Direct Payments are not income related.

 

We have a charity in my area which provides support staff to attend some leisure activities with children, but nothing more in this area. We do have access to CAMHs team but thats just a Psychiatrist who checks his meds etc. We can't get an OT assessment as in my area ASD doesn't meet the criteria. My son has seen a S&L therapist once (he's 7 now).

[melly]

Thanks Lil me,

 

From what been written then it seems that we aren't doing badly at all!

 

I know that we have been very lucky getting the small boy into the specialist nursery, so i will just ensure we make the most of the support and services that come from there.

 

Thanks all

 

Melly

[pumpkinpie]

Direct payments is not means tested, it really is a matter of taking what is on offer, does your local autistic group do anything?

[Tilly]

I thought the only thing that was means tested now was the family fund.

 

The disability living grant has now stopped the means testing and we are hoping to get some work done to get dd her own bedroom so she can opt out whenever she chooses. So far we have been waiting 6 weeks for the OT to visit us Has anyone else had any dealings with OT and how long did you have to wait before one came to see you.

 

Tilly

[on the edge]

So far we have been waiting 6 weeks for the OT to visit us Has anyone else had any dealings with OT and how long did you have to wait before one came to see you.

 

Tilly

 

Have waited several months so far - which I know is nothing - but the lady in question is simply ignoring my calls. She is never in and when she is she is in an assesment. I have not even managed to speak to her once in two months!!!!! I am considering finding one privately - but am not sure how useful this will be! My son already has a private speech therapist and a state funded specialist teacher and has just got into a specialist nursery with a S&L department. However his stimming seems to be a light sensativity issue and I want to find a way to help him with it.

[lil_me]

We can't even get an OT assessment as there is not enough OT service available to see children with ASDs