Can't mumsnet do a campaign? 11 MPs at autism and education debate

[Mercythompson]

www.parentdish.co.uk/2014/07/18/parliamentary-debate-on-autism-and-education-just-11-mps/

Says it all really!

I have a ds who has High functioning autism. He is not failing academically and not disruptive. I have spent over £1600 on reports to prove how much support he needs but school won't do anything because;

A) they don't take private reports (not ones that mean they have to spend money anyway)

B) they won't commission borough reports because they have no money and no proof of enough need (it's in the fucking reports that you refuse to use!)

The only way to get him the support that every other person agrees he needs is to go for an EHC and spend thousands more.

Even if we did all the legal stuff ourselves, fuck knows how, we could easily end up needing three sets of reports as the process can take 2 years and reports are only valid for 6 months, never mind the cost of the experts at tribunal.

And, as is amply demonstrated by 11 MPs turning up at the debate, the government don't give a fuck!

There must be a campaign in there somewhere.

(Sorry for the language, can you tell I'm a bit stressed?)

Got a letter from my MP in response to my email. She explained how she had a pre-arranged meeting outside of Westminster that day and apologised. She went on to explain that she felt services for ASD were poor and how parents felt unsupported. That she supported changes to make the support better. . Changes tbh which will have little effect for many of us abd its all very well supporting things, actual stuff needs to change.

She has invited me to discuss issues relating to ds case ...... Oh where to begin?
OT telling me if I want further therapy I will have to pay for it.
No after school clubs or holiday clubs with trained staff so that I can go back to work
Senco's low expectations, the fact that ds has done better academically than some NT children means that I should be happy.
Inadequate SALT meaning that we have sacrificed many things to pay for the much needed SALT.

The list goes on!

Frizzicat. It's all shit isn't it. No response from David Cameron to either of my emails. Been on holiday but will email my mp next week.

Can I join in? Edward Timpson is my MP. I met with him two years ago whilst he was Minister for Children and discussed the many, many autistic kids (like my son) who were "slipping through the net" in terms of available therapies and services. He was open to the criticism and did help us, to a point.

It is scandalous that we spend so much on other causes/foreign aid etc and yet many of our services/support for disability are dependent on charities. Ds was referred to a specialist as his "mild, HF ASD" has been so detrimental to his life (13 yrs now) that the mainstream school (with attached ASD unit) he attends are at a loss how best to serve his complex needs. The Professor said "your son ought never to have been discharged aged 7 from Autism Services. He doesn't have mild autism. He is bright and articulate yet, classically he has significant impairment and should, all these years! have had much greater input". I wanted to cry. I've been asking nicely, demanding and banging on desks and getting nowhere for bloody years. No one listens. No one cares. Recently, I've taken my ds to a local social outlet. It's run in a very deprived part of a twin 6 miles from us. The building is ancient, the equipment (toys/sofas/tv's/games consoles) is all donated. There is one guy who runs it, promotes it etc and he is helped by parents of kids with autism. The ceiling is patched up, the paints peeling and it smells strongly of damp. The walls are covered in "help raise money to keep our centre open" posters and funding targets. It's a community resource run on thin air and good will. Scandalous.

I will happily support and be involved in any campaign which enhances the lives of our kids and adolescents who ultimately, will be adults with autism very, very soon.

I got a shitty reply - basically just saying he is a busy man who cannot be everywhere. no acknowledgement at all of our difficulties I mentioned in my email. just writing a response to him. overpaid twat.

He's too busy poking his nose into world affairs which really, we have neither the clout nor the finances to uphold.

He needs to have a really long, hard look at what's going on here, in his own back yard.

It's all so very desperately sad, they simply don't care and we have no choice but to keep on keeping going. I hate the officers who have destroyed my child's chances of anything near an ordinary life. I despise the MPs who know what they spout out will not materialise in the real world but they can pretend they've tried. Next year brings with it the possibility of a new government but will any of them champion our children or continue to kick parents as often as they can as hard as they can and as near to crisis point whenever they can?
I think I must be having a bad day! There have been so many this holiday period and today is my husbands birthday. Of course we have spent little time together as my little darling has had so many melt downs it has been impossible and I am nursing a very bruised tummy as a result on which my scaring is not healing.
Moan over, and I agree our children are of such little importance to those that should ensure their development it's sickening. Why don't they get a different job if they don't give a shit?

Maybe that's it we should launch a campaign

"get another job if you don't give a shit".

There's bound to be room in banking or finance somewhere surely?