It has been a busy couple of days.

Dinky has been off with her special needs group yesterday on one of her 3 days during the 6 weeks.
So it gave me the freedom to go to Dinky’s initial CAMHS appointment regarding her ADHD assessment, because you know that just having ASD-PDA, sensory issues and sleep difficulties isn’t enough for my Dinky lol!

As soon as I dropped her off I went to the appointment with the Conners questionnaire, the strengths, difficulties questionnaire, the ASD questionnaire and my parental concern sheet.

To be honest after being turned down by CAMHS a grand total of 5 times, I didn’t know what to expect. There are lots of people angry and dismayed by their services.
I went in with an open mind.

Instantly I was happy! The woman I saw read Dinky’s diagnosis letter and said that some people don’t believe in PDA, but she wasn’t one of them.
We discussed PDA and it’s place within autism, we also discussed schooling. I was even more happy when we talked about the type of provision for PDA and she agreed that a BESD approach would be detrimental to Dinky and her future in education. I should have got that in writing for the social worker as I believe the only school that came back with an EOI (expression of interest) from the last DPS, is indeed a BESD school.
Should be interesting, I plan on giving scenarios and bringing evidence that those strategies are wrong. Hopefully this will show the social worker I have every need to be ‘picky’ about which school I send her to.
The CAMHS person was surprised at the small amount of support we were getting.
She skimmed the questionnaires and didn’t seem surprised that the ASD questionnaire came back positive for ASD.
We then discussed how this would go. As Dinky is not at school, she asked if I was ok with them sending the Conners form to the old school. I agreed to this because funnily enough ADHD is the only thing the school DID agree on! Plus the head of nurture was a fair woman, just unfortunate that dinky was put in there when it was obvious that it was not right for her.

I her that the paediatrician wants to trial Dinky on methylphenidate and that I was reluctant without a medical cause. Of course dinky has enough trouble with education with her PDA, I want to give her the best chance of attending if and when she might be willing to engage, but without a justified reason, it seemed wrong to give my 6 year old stimulants. She agreed with me, and then said that she would talk to the psychologist and get Dinky’s case marked as a priority for clarification.

We could have the diagnostic appointment as early as the end of September as most of the work has been done by CDC and her ADHD symptoms seen in clinic have been logged.

It was very productive and positive.

This morning dinky had 5 hours with her 1:1.

I was going to chill right?

Erm no… I had a meeting with someone from the CCG. I was asked by the local parent carer group to share my story with them as they are trying to make things work for children with additional needs.

I took all my paperwork.

I started at the beginning… I took my red book which showed Dinky was behind with her speech at 2 and for 20 months I kept going back and asking for the speech and language review I had been told was needed.
I went through the whole thing, how Dinky was turned down by CAMHS, the GP didn’t know where to send her, they didn’t see autism. And the impact that had on dinky and me, blamed it on our housing blip, blamed it on my parenting, on our social economic status.
Many times the CCG woman gasped, she couldn’t believe the things that had been said and how we were forced out of the first primary school.
We moved onto the latest school, the 20 minute NHS SALT assessment we had waited 3 years for, which contradicted itself and made out there was no issues despite other professionals having reported the opposite.
We discussed the paediatrician who said she may have PDA, but he wasn’t concerned about ASD.
We carried on discussing how things had gone, how my only sanity saver was the pals officer whom helped immensely!
We discussed OT who despite not talking to dinky once said dinky didn’t need a special school.
Again the woman was shocked!

I took us right up to date to the diagnosis and the CAMHS appointment yesterday.

I went to make the point that all of this could have been stopped at 2… Went to grab the red book from the bottom of the thick pile of paperwork I have amassed over the last 4 years… I then ended up flinging my phone on the floor… Kind of dampened the point I was trying to make, but I recovered well lol

The woman said that it is obvious there needs to be a complex presentation pathway, and she invited me to events and meetings to re shape the services.

I was very happy! I would love to make a difference.

I couldn’t leave without mentioning a family who were recently told our CDC don’t diagnose PDA, she gave me her card and told me to give the family her details and she would try to help the family.

It felt good to be part of making a difference to the future of services!


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