working as a unit

[desperate]

Hi all,

I've fired off lots of e mails again today to try to bring the plight of our children to the notice of those who could, and should change things.

Over the last few months I've been in constant touch with MP'S the NAS and anyone else I could find to nag at.

The trouble is I'm one on my own, and you are all one on your own, we need to get organised and speak as a unit. Let them see that we want things to change now, not in two or three years. I was speaking to the head of an asperger resource unit the other week and she siad she'd been doing the job for ten years and at first she believed. She went on to say that things are no different now. She goes to all the council and government meetings to get funding for post 16. But her voice is always much "quieter" than the young offenders schemes, or the young and pregnant schemes.

We need the right provisions and therpies for our school children and we need the right help and advice for them post 16. To get this we need to fight the battle as a whole not as individuals.

[oracle]

I could not agree with you more - united we stand and all of that

 

Carole

[elaine1]

oh yes i quite agree. We are a minority in the social service side of things and in education to.

lets be heard!

[Flora]

I've been doing my fair share of firing off letters and emails recently. I've recently sent a letter to the head of a private school who turned down my AS son and copied it to lots of MP's including the PM and various other people. I'm also trying to get the Tribunal to exercise their discretion and allow us to make a discrimination claim later than the cut off time allows.

 

I'd be more than willing to get involved in any united efforts to bring the plight of our children and the lack of provision in line with what it should be. There is virtually no help on offer and the help available takes months/years to 'fight' for and this is an absolute disgrace. Not to mention the constant discrimination (which is supposed to be illegal) going on under our very noses.

 

I'm sure I've got a tinkerbell costume somewhere I could squeeze in to maybe we'll be listened to if we all dress up and go and swing from London Bridge or similar!

 

Lauren

[Flora]

I made the above suggestion as a sort of joke, but to be honest I'm so desperate I think I would actually do it!

 

Lauren

[Elanor]

I agree - our voice is not strong enough unless we join together.

 

So what is the NAS for? Forgive me for sounding bitter, but I think that the NAS, as the NATIONAL organisation, should be doing a heck of a lot more campaigning than it does.

 

On a local level, we can do more, and have an individual impact. In my area we recently set up a Asperger's parents group - one of our objectives is to make our case locally - in education, social services, health care. It's early days for us yet - but I get the strong feeling that there is a lot than can be achieved through local organisation. Our very supportive CAHMS is practically begging us to get political (with a small 'p') - as they aren't being listened to.

[lorryw]

I often wonder about the NAS. Over the years they been of no help to us at all.

I emailed them asking what help my son should be getting from social services as I felt he was being discriminated against because of his disabilities. They suggested I find a solicitor with experience of discrimination laws. I have neither the energy or finances to go along that route and was simply hoping for an advocate service or something similar.

I have been contacted by the Independant Living Fund (my son is 20 and lives at home with us) and the guy who visited said that the fastest rising sector was those with autism.

[Minxygal]

You can count me in. I spend half my time writing letters and speaking out. I have a big mouth but as you said, one voice is never loud enough.