Poor dinky has become a tennis ball!

Dinky is currently being batted between the child development centre (CDC) and CAMHS.

If you haven’t read some of the more recent posts, the story so far (up to today), is as follows:

In July 2012 I went to the doctors and asked for a referral to CAMHS. CAMHS said no.
In October 2012 I went to the doctors and asked for a referral to CAMHS. CAMHS said no.
In February 2013 the old school asked that dinky be seen by CAMHS. CAMHS said no.
In March 2013 I went to the doctors , having found out about PDA asked for a referral to CDC. CDC said yes!
July 2013 saw Dr H, he said concerns over PDA (although didn’t know what it was), but not ASD (PDA is an ASD).
October 2013 saw Dr. A, said social communication, but later called and said PDA, have a provisional diagnosis and referred to CAMHS, as CAMHS are the specialists in PDA. CAMHS said no.
November 2013 at young persons planning they asked if dinky could be seen by CAMHS, CAMHS said no.

Which brings us to current day on the CAMHS-CDC tango.

So today 16th December 2013 I get a call from Dr. A. He was upset that CAMHS said no, he said that he spoke to the consultant from CAMHS who agreed to see her, and now the referrals team have turned it down. I told him, the letter says it is CDC remit as PDA is an autism spectrum disorder. He said “not really”.
speechless
He said that it used to be considered atypical autism but now they know better. I wanted to shout down the phone
“YES, ELIZABETH NEWSON FOUND THAT A GROUP OF CHILDREN HAD THE SAME CLUSTER OF SYMPTOMS AND CALLED IT PATHOLOGICAL DEMAND AVOIDANCE- PDA FOR SHORT… IT IS STILL PART OF THE AUTISM SPECTRUM, A-TYPICAL OR NOT, IT IS CONSIDERED A SUB CATEGORY OF AUTISM LIKE ASPERGERS IS A SUB CATEGORY”
He said that he is all booked up for January, but will speak to the consultant face to face mid January at their monthly meeting, and we can go from there!
I said NO! I have been trying to get CAMHS to see dinky for 18 months and I am not waiting while we are passed backwards and forwards. He said we won’t as no one in the CDC is experienced enough to deal with PDA, and he is leaving in March. Pfft!
He said we will have to wait… I told him I am sick of waiting, dinky is really struggling because no one will use the PDA strategies because the diagnosis is only provisional. This has led to 3 exclusions in 5 weeks and 2 near exclusions on the weeks she wasn’t excluded. Something has to be done! Well, he will write a letter after Christmas. We went back and forward with him saying he appreciates the difficulties having a child like dinky, and said he has seen it first hand and knows that she is struggling. I said that is why I need action not letter writing. I think he got annoyed with me after that.

So who knows where this is going to go and how long it will take to get there. I thought I was getting somewhere, then it all gets ripped apart.
Panel is on Wednesday. I just hope Dinky gets a statutory assessment.

Tomorrow is Dinky’s school Christmas performance. She was supposed to do two in one day. I said that I don’t think she can cope and they agreed, actually I think the SENCO realised she shouldn’t have grinned when I said I was thinking about collecting her early and went to the fake concerned tilted head nod with sympathetic hum.
Funnily enough it is all fine and I can collect her at 1.15 pm after lunch. I am going to see her performance at 10.30am. I can’t wait. Then we come home for a bit before soft play Christmas party!

I’m a tad fed up with all this fighting… It would be nice for something to go right for Dinky, without having to complain/push/fight.

I contacted the strategic commissioning manager for children’s services in our county, I actually started off by apologising for pestering her, she was nice, and said I can contact her anytime. She is going to see what she can do. Also saw my support worker, she emailed the MP, and got a message back, he apparently said he will do what he can to help. I don’t care who I have to go to… I can’t let dinky suffer much more. It breaks my heart.

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