What to ask for after a dx

[sammythemummy]

Hi all,

Hope everyone is doing well and all your children are happy &healthy.

Quick question in regards to dx, are they meant to set up services for your child after theyve given you a dx?

No.

The majority of services / support are delivered via school/education e.g. SALT or via NHS if you need OT.

Ok thanks.

Its asd related

No Sammy, 'they' will do nothing. Like I said to you earlier, you have to work on it yoruself. Mumsnet is a great source

Morally they are meant to IMO. But tisn't the way it works.

You have to figure out what your child needs all by yourself and then argue strongly for it to be provided.

It's one of the main reasons I did ABA. It's very detailed in the analysis of the issues and gives a structured curriculum whilst providing plenty of evidence.

Sorry to be so negative but the truth is that "they" will most likely provide nothing useful, not even the correct information, and anything you do get you will have to research yourself, arrange yourself and pay for yourself for a considerable period of time. I speak as someone whose DS has had a statement since March, which actually specifically specifies an ABA/VB programme and one to one support at nursery, and who is as yet still fully funding it all herself, having seen not a penny from the Local Authority to fund any of it despite it being on the statement. The point is that you need to know that waiting for someone else to suggest/do/fund anything is not going to work. It is up to you.

I realise that all sounds rather bitter, sorry about that, I guess I do just want to emphasise that you won't get the right help by waiting for it to be offered. It won't be. You have to go and find it.

So really why do we fight so hard to get a dx? Is this for statements as well?

Yes. I'm afraid so.

The rule with statements tends to be this (barring a rare few good schools/LAs):

If your child is making no progress but is too young to be causing the teacher or school any discomfort or angst then leave them be until they become a problem.

If your child is disrupting the class, being aggressive or generally being a pain then the school will apply for a statement for the purpose of getting in provision that keeps the child out of the way, as opposed to helping the child to develop.

During the journey from the former to the latter, blame the parents, try and justify exclusions or part-time schooling, try and encourage the parents to move their child to another or special school.

That's my experience having had now 4 years of researching and reading the experiences of parents with children with disabilities.

Ah I look forward to that then ds is away with the fairys and failing but he keeps the anger in for his elder brother. No one is put out by him. I did ask the salt yesterday if I pumped him full of red bull would he get more help?