PDA conference

Yesterday I went to the PDA conference run by the National Autistic Society in Peterborough.

I stayed overnight the night before, leading up to this was very stressful for Dinky and Me. Dinky was emotional and kept crying, and I felt guilty for making her cry.

Lots of bribery later, and she let me leave the night before. It was a very long journey.

In the morning I facetimed Dinky, and she loved it. My dad had managed to get her ready for school on time! Dinky had left my dad to sleep in the morning as she was watching youtube videos (I will be working on her doing this for me haha).

There were so many people there!

Julia Daunt and her partner Paul came over to say hello. Which was pretty cool. Julia is a legend and her partner is just as lovely as she describes him to be.

Dinky’s teacher came to the conference and made a ton of notes throughout the day. During the breaks we talked about all the things that happened in dinky’s mainstream schools. She was shocked at some of the things said to me by teachers and head teachers (all of which can be found in this blog). She made me feel better about some things and really put me on the spot when it came to my not so positive thoughts about dinky’s struggles in school and my personal feelings on how her difficulties are recognised. Uncomfortable doesn’t begin to cover that aspect!

I really enjoyed listening to Phil Christie, Margo Duncan, Ruth Fidler, Jacqui Ashton-Smith and Judith Gould- one of my highlights was going to hear Julia Daunt (author of Me, Myself and PDA) talk with Ruth Fidler!

I’ve read Julia’s blog, but it is so much better to hear it spoken and live! She will hate me saying this- but she was utterly fantastic and I felt utterly in awe of her as it must have been really hard building up to the event and the demand and expectation of speaking in front of a room full of people. I was so glad that Ruth Fidler left her talk on time and didn’t take questions in order to support Julia, and paul was there to give his support too.

I don’t think much of the conference material was news to me, especially as I didn’t attend the research developments talk in favour of Julia’s talk.

Again, it was great just to hear the other people talk and to know that Dinky’s teacher had heard it all and would be feeding it back to school in a team meeting, not just for Dinky, but for other children in the school too.

When the conference finished I facetimed Dinky again who asked me to come home now, so I started the car and drove home!

Dinky was very happy to see me and gave me big cuddles! She didn’t sleep very much last night, she was up until 1 am and woke at 5am. She then tried to go back to sleep when she was supposed to be getting ready for school. She was not impressed with me. She had several physical meltdowns and I bore the brunt of these.

I really hope she has a better day at school.



Officially Dinky’s longest placement!

Some would say it wasn’t something to celebrate, less than 1 academic year at a school is not an achievement but should be a given for a 7 year old.

Ah! But Dinky is not a typical 7 year old. 

Her first placement crashed and burned after 2 terms. Her second placement after 2 terms but she ended up staying 2.5 while assessments were taking place. I’m pretty sure they would have kicked her out earlier if they had the opportunity. 

So special school and we are past the 2.5 terms and not only that we have had several passing mentions of Dinky not only being in the same school, but also the same class for a few years yet! 

The teacher is making a commitment to Dinky by asking to go to the PDA conference later this month! 

It is very positive! 

Dinky is doing well and learning! She is really enjoying school, and I’m so proud of her and know it is only because of the work her teacher and TA’s put in! 

I look back and see all the negative and see just how far we have come.

The thing that is strange is that it felt like a massive fight, but in reality I only had to fight for assessments, because once assessed she was given the things she needs. 

I had to fight for an ASD assessment- she was Easily diagnosed ASD-PDA

I had to fight to get her seen by an OT- she was easily diagnosed with sensory integration difficulties.

I had to fight for an ADHD assessment- she was easily given the ADHD diagnosis and meds which have really helped her. 

I had to fight to get a statutory assessment for a statement- once assessed she was given access to an amazing independent special school and the therapies she needs (OT, SaLT and Drama)

I had to fight to get a social care assessment- she was given a personal budget to help her access the community, for sensory and other equipment and for me to have some respite. 
People look at Dinky and her surface sociability and ability to mimic others and don’t see her struggles or how disabiling her conditions are for her. So I had to fight tooth and nail for the assessment and not once have I had to argue the outcome.

I haven’t been to a SEND tribunal. I’ve not had to fight for a second opinion after a full medical assessment. And I didn’t have to argue for more from social care as her package is way more than even I anticipated. 

The only thing I did have to fight is the DLA mobility element (disability living allowance) because they don’t always follow their own criteria, and although it went to tribunal, I didn’t have to say anything they had awarded before I walked in and the DLA rep agreed and said he didn’t know how it had got that far!

Would I do it all again?

Hell yes! I didn’t do any of it for me, I did it all for the awesome little lady that is Dinky. (Although slowly but surely she is becoming less ‘Dinky’ despite my appeals for her to stop growing, but she assures me she can’t – haha

Fuming would be an understatement

Fuming would be an understatement
Camhs- the marmite of the SEN world in connection to mental health, autism and ADHD.
Most people either love them or hate them. Although most people hate them.
Because they 

  • have a ‘blame the parent first’ approach. 
  • Tend to not be able to see the what is glaringly obvious 
  • Tend not to stick to or do anything they say
  • Back each other up when they are clearly in the wrong
  • Refuse to help children based on funding 
  • Refuse to acknowledge certain conditions because they feel that they know everything and if anything else emerges and they haven’t heard of it- it must be ‘American’ (sorry America for our crappy doctors opinions)
  • Don’t seem to see that they are hypocrites and give conflicting advice

And so on and so on.
Put it this way, if camhs ran on a performance basis, there wouldn’t be many people left- maybe 8 consultants to run the country’s entire CAMHS!
So why did I expect any different? 
That I don’t know and not even my therapist understands how I have hope left in me after all the crap we have been put through to get to this point!
So what happened?
Well, Dinky’s appointment at camhs didn’t go very well in April, here is the draft complaint letter about that appointment that I wrote about on the day. 
Today yes today- the 10th of NOVEMBER, I finally received the clinic notes all one side of A4 (once you take out the first half page of addresses and NHS numbers, DOB Ect- and ignore the signature and al the CC’s. 
Fuming is an understatement of epic proportions!
There are SEVERAL things wrong with this letter! 

A couple of major inaccuracies, some omisissions and some flat out lies to cover the ADHD nurses back! 
Some things I can let go, but the 2 most stupid parts of the letter are 

  1. ‘She is very able in maths’- Dinky is in pscales (P8) which is reception level for maths and is in year 3, so she is 3 years behind. 
  2. ‘Responded acceptably to ADHD nurse’s expert direction’ Here is the link again for the session this is regarding

appalling- it took 7 months to get this letter which is not acceptable!
He also mentions mainstream a few times in relation to Dinky’s reading ability and attention. Which really annoyed me. How about age appropriate rather than mainstream because she ISNT a mainstream pupil!
I am so annoyed! 
I’m going to be asking for a change of doctor and only to be seen for medication review. 
I have had enough with muppets not being able to do their jobs properly! Infuriates me! 

Please excuse the mix up in the last post email readers 

The last blog post said ‘I don’t condone screen time’ – this is apple’s way of using auto sentencing to make people look like complete a-holes!

I’m not a hypocrite Dinky’s iPad is well used

If you limit your kids screen time- cool
If you don’t limit your kids screen time-cool

Each to their own, each kid is different. 

I’ve edited the post- sorry for the mix up