Took diagnosis letter to The Muppet, NHS OT home visit, SEN team call and private OT open day.. all by 1pm!

so it has been just over 24 hours since the diagnosis and it was a long hard fight. Not for any other reason than the school making things hard and having to try and find someone who understood PDA. I had talks with PALS, the head of paediatrics and the head of the CDC. Dinky was the pathfinder for PDA for our CDC route as they needed to stop CAMHS vs CDC hot potato game.  That CDC had not diagnosed a child from beginning to end (One paediatrician had added PDA to other children’s ASD diagnosis). So the structure of the assessment had to be looked at, and the official line had to be drawn in regards to where they decide PDA sits on the spectrum, if it does at all.

I have read some literature about getting an ASD diagnosis, they all say prepare for the news and you may feel this or that… I don’t know whether I was expecting it, or the fact that I have been hectically busy and haven’t taken stock, but nothing has changed. How I feel about Dinky hasn’t changed, how I feel about her having PDA hasn’t changed- the only thing that has changed is that now I don’t have to say ‘provisional diagnosis’ or ‘they think she has PDA’, I can say full out… Dinky has an ASD called PDA!

Today was hectic!

After we had taken the dog for a walk and before the NHS OT came out to do her assessment, I took the diagnosis letter from yesterday to the school!

It must have been fate- there was The Muppet (Dinky’s old head teacher)  on a phone call right in front of me!

Once she was off the phone I said “I have something for you”, her face turned sideways, kind of like the way our dog does it when I say ‘whos a good doggy?’ hahaha

I handed over the envelope and said “here is Dinky’s OFFICIAL autism diagnosis of PDA and a covering letter”

Her face dropped, she said “thank you” in a fake polite voice. but she couldn’t hide the look on her face!

I wish I could have been there to see the look on her face to see the covering letter!

Please find attached Dinky’s diagnosis letter, confirming
AUTISTIC SPECTRUM DISORDER- PATHOLOGICAL DEMAND AVOIDANCE.
This is what I have been TRYING to tell you from day one at the school. Your refusal to listen to this has led to a complete breakdown between myself and the school, and has led to Dinky, currently. not being in education at all.
This is why I have been so ‘difficult to work with’, because I KNOW my daughter.
I believe that a written apology for failing my daughter in the 2.5 terms she attended the school is the minimum that should be offered by the senior leadership team! Especially given the refusal to engage with me after her provisional diagnosis.

Yours sincerely,

I wont get the apology, I have more chances of pigs flying or becoming a millionaire over night… but she must have been so annoyed by the thought of the need to apologise, or my pointing out how much they have failed Dinky!

I should have been more grown up about it, but hell, it made me feel better… vindicated.. I let her know that as much as she tried to put me down, calling social services, lying about Dinky’s struggle in school, and flat out lying to the MP… SHE didn’t get one over on me! I am strong and I wont take her crap!

I have also written a letter to the head of the old school who said “X school will be better at dealing with families like yours” whose senco also didn’t put anything in place for Dinky as she said “It is not like she is autistic”. I haven’t asked her for an apology but have said that she needs to learn from this as she has made a judgement and had no idea what she was talking about, and actually her advice has really made our lives more difficult.

Then the NHS OT came out. She came to assess Dinky as part of her statement (although technically the statement should have been written by now!). Dinky was jumping all over her, and was basically just being a bit of a pickle. We managed to get Dinky to draw a picture of a dinosaur so that she could see dinky’s fine motor skills, she checked her muscle tone in her hands and engaged Dinky in playdoh. I showed her videos while Dinky was smacking me for daring to have taken loads of videos without her knowledge. But the OT said they were helpful, as I had ones of her noise sensitivity, loads of spinning videos, one of an attempt at using scissors, rocking, hand flapping, sniffing things, chewing her tiger toys ect. I showed her the ed psych report which states Dinky displayed sensory seeking behaviour of heavy persistent rocking and licking door handles.

We discussed other things- and she said she would try to do the report as quickly as possible. She said she would send me information on looped scissors without holes in, exercises with pre writing hand eye co-ordination, fine motor skills and compression vests.

The OT said Dinky was definitely a sensory seeker, but with sound and bright light sensitivities.

She asked if Dinky was ALWAYS this energetic… I said yes, we are waiting for the outcome of the ADHD assessment as there is some PDA-ADHD crossover in attention difficulty. She said that it made sense, and that some of the problems dinky has with writing might be due to lack of practice due to her avoidance, lack of attention due to the possible ADHD or anxiety with the ASD/PDA. It still needs to be worked on but there isn’t a clear reason.

Next up….

Call SEN team.

I phoned the sen team and let them know dinky now has a DIAGNOSIS of ASD-PDA and that they have taken ‘Severe behavioural difficulties’ off the list of issues, and I would appreciate it if they could begin the process of amending the primary need to Communication rather than BESD! She was quite good if I am honest. She said if I could copy it and send it to her that she would be happy to use that to begin with while they wait for the report, and then she would call me at the end of the week and discuss a timeline for the completion of the statement as they are aware that they are quite a way over the 26 weeks they have to do it in! She did say that having the official diagnosis does help to clarify the needs, and that this will be done as quickly as possible.

DONE!

Next…

Private OT open day!

Wow! Dinky absolutely LOVED the sensory integration therapy room… she enjoyed the lycra squeeze tunnel, the bolster swing, the trolley down the ramp, the trampoline, the platform swing, the theraputty… basically a sensory seekers DREAM!

(she also enjoyed the chocolate brownies they had laid out 🙂 she was having a whale of a time!)

I am seriously considering having a private assessment, but couldn’t afford a regular £70 for 45 minutes of sensory integration therapy.

Although I am considering the body sox!

We got back at 1pm!

From then on it was basically a case of playing a few games with Dinky, then getting my dad’s ticket for the London aquarium on Thursday, dinner and walking the dog!

Dinky is currently bashing about in her room… melatonin time… hopefully!

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4 thoughts on “Took diagnosis letter to The Muppet, NHS OT home visit, SEN team call and private OT open day.. all by 1pm!

  1. Yay! Happy for you that this means you should finally get the support – which you should have had all along anyway. Shame on the schools for not putting all the effort in to help your girl x

  2. Well done again! Hope you get the BESD off her statement . We managed that for Dillon yet Monday we had a call from the BESD school saying he had been allocated a place!!! They were quickly put right on the fact it was the wrong provision and we are currently working with solicitors on an appeal!! Keep going… You’re nearly there! Xx

    • It is madness that they took BESD of his statement yet STILL tried to put Dillon in a BESD school 😦

      I’m going to be sourcing autism specific schools now Dinky has a diagnosis, and ask them if they cater for PDA.

      I REALLY hope that Dillon gets offered a place at a suitable school soon xx

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