advice and support for families of a newly diagnosed chil

[elun1]

Hi everyone

I was wondering if anyone had any advice on the following. I've been invited to a meeting with clinical psychologist and speech therapist and a couple of other parents of autistic children to put together some ideas of what parents of newly diagnosed children want/need and also what would help parents who are going through the process of diagnosis and assessment. In our health authority at the moment support isn't bad. When ds2 was diagnosed I was given a helpful folder with various information about autism and useful contacts and websites. I had a follow up visit from clin.psych the following week and help from speech and language dept to teach my son PECS. What I really wanted though was some one who really knew how I felt to guide me through the awful months which followed. I now have a key worker but not for 2 years after diagnosis. Anyway, what do you think would be most helpful to you? Does the supportI had sound more/less than most people receive?

Many thanks

Edited May 7, 2006 by elun1

[Zemanski]

much more than we've had

 

in fact we didn't get anything at all (information or support) but that was 7 years ago now

 

Zemanski

[Bagpuss]

Hi,

 

We've been thru the process of assessment and diagnosis twice. First in Blackpool with our eldest daughter. Later turned out she had been misdiagnosed, but still, during assessment etc we found support good. Everything was carried out at a child development centre, and we found we were able to meet other families going thru same process. Plus, we got to know everyone, professionals etc, well. We also found the support after diagnosis good. We were offered various courses etc which we could do. My only gripe would be that we completely disagreed with diagnosis, but our concerns were not taken seriously enough. We were treated like parents in denial. Other than that we can't complain about any of it. Our daughter is now 8, and to be honest we are wondering if they got it so wrong after all as she has some very odd behaviours and traits....but, thats for another time and thread.

 

Our youngest daughter was diagnosed in Cleveland. Again at a child development centre. Found it quite a positive experience, but found support disappeared after diagnosis. They took their time and by the time she was diagnosed she was 5, and attending school, so maybe that was why. We've been offered Early Bird Plus course, which we are currently doing. Not been given any other support though, or advice about making contact with other families, which I think is absolutely vital. I would say overall I found the process far better in Blackpool than here.

 

Take care,

 

Debs

[justamom]

The support you have recieved is much more than we ever got , after dx we were given a website add and thats all....

[lotty]

Hi, we have had no support, I had to find out everything myself. five years later I am still wondering what social services do etc. so you have done well

[lisann]

Lotty know what you mean.We got dx two years ago now and got a leaflet that was it.We are only now getting help from Social services, clinical pyscoligist, OT etc.......

 

Think answer to the question is us parents need as much info as we can get yes it is all a bit too much to take in stright away but been left with nothing doesn't help us or our kids.

 

 

Lisa x

 

p.s forgot to say we are only now getting the help after constant nagging

Edited May 7, 2006 by lisann