Parent carer event- and the last few days

This blog is quickly turning into a blog about the school.
With the TAC approaching it seems like the school is the main focus.

I have been trying to think of ways to get the school to understand the impact of the day on dinky. I kept focusing on ways I would teach dinky things I have come up with some ideas, however I don’t think I could do it in the TAC.

One Idea is….

Strap a beaker to Dinky’s remote controlled car, periodically pour more water in for things like sensory, writing, socialising, direct commands, change in routine ect. Then drive it so fast water comes out. Explain that every drop of water is a behaviour they don’t like or a minute under the table/in her tent. At the end make sure the car tips over spilling the water everywhere, leaving me to clean up. However when she is at school I’m not driving the car…. They are!

Others are slightly more grown up but with a very visual theme!

Wednesday’s swimming lesson did not go well at all!

I forgot to take Dinky’s ear defenders out of her book bag, then she was being dangerous in the pool again.
This time she was pulled out of the pool and then ended up having to be restrained. She was in meltdown, screaming, punching, kicking and biting the swim teacher. Once she calmed down it was back to normal. She actually left the pool ok, and let me dress her. I got the ‘well, she seems on the spectrum’ talk. Which is starting to drive me mad.

Thursday I had my second group session. Talk about horrible on top of nasty with a side of crap. However, with the parent carer conference today and thinking on the TAC on Monday, it hasn’t been too bad.

Conference

Educational psychologist
-asked questions about Dinky’s behaviour.
-asked who was involved with her and what my relationship was like with the school
– I told him my view on what she was like in school and the information I get back from the contact book.
– I mentioned PDA and he agreed that from what I described, her IEP, her school report ect, that this is a possibility.
– he was going to liaise with the social communication team and talk to the educational psychologist who will be coming to the school re dinky.

Occupational therapist
– asked what my concerns were from an OT perspective.
– I showed her pictures of Dinky’s more peculiar behaviours I believed to be sensory in nature from her choice card that I made on advice from the family link worker
– she agreed dinky is a sensory seeker, and said it is ok for dinky to do her sensory seeking as long as it didn’t impact seriously on anyone else or endanger herself, for as long as dinky wanted.
– she assumed dinky had a diagnosis of autism spectrum disorder and I had to correct her and say she was awaiting formal assessment
-She suggested a chalk board/easel for drawing and painting, and throwing games. Also playdoh and other strength building exercises.
-I mentioned the chewing and she suggested sensory chew items
– if I don’t get anywhere with CDC referral, she said definitely go through GP or SENCO for OT referral, and they could assess her and do a sensory profile and sensory diet

Carer support
– going to find some support for me
– also looking into a grant
– and their own version of a carer’s assessment after they put me on their database

Social worker ( from CDT)
– asked lots of questions about dinky- was the first to mention the autism spectrum.
– said we would be borderline for services from CDT
– recommended calling CAP re: assessment for dinky and myself with a view to possible direct payments.

SaLT
– explained the process that we are going through
– said the report done was good
– mentioned autism, and social communication team to which I replied, “awaiting assessment and on the way”

CAMHS
-asked what behaviours dinky was exhibiting
– HE mentioned ASD and PDA
– recommended **Asking in the TAC for a request from the LP to CAMHS asking specifically for a PDA/ASD assessment to either rule it in or rule it out. As they have specific specialists in this area citing early intervention before she gets to Tier 4.
Recommended sending in evidence of difficulties in school (possibly copy of her contact book? hiding under tables, running through corridors, not wanting to go into the classroom and spending more time with SLT in the afternoons, being unsettled after a change in routine, upset by class displays changing)
Evidence things at home, the Hoover sensory seeking, and spinning. Avoidance at home, lining up toys, visuals in place ect.
-He was honest and said that what I told him about our referral to CAMHS, he probably would have done the same if it landed on his desk, 5 year old, homeless and with behavioural issues… Nope. He said be specific, use the evidence. Don’t say you believe it is solely something, show them why you believe it is PDA and ask for their opinion- explain the change in circumstances. She is 5, it would be a ‘young catch’ of a ‘contentious’ diagnosis.

The only downside was talking to the behaviour ‘specialist’. I explained that I believe dinky has PDA.
He asked why, and said that a strict teacher is normally good for ASD. I told him that. When she shouts and gives direct demands dinky hides under the table. He said that wasn’t a stereotypical PDA trait. He said that would stereotypically cause opposition or extreme behaviour. No. Not really. I said it is an anxiety thing, he said PDA Isn’t anxiety. Anxiety means it is not PDA.

Basically he is a muppet. A fake. A fraud, pretending to know about PDA. I don’t know all there is to know but the main thing when most people talk about PDA they talk about anxiety levels. Because that is what drives the behaviour. Avoidance due to anxiety. Avoidance does not mean opposition. Dinky’s hiding under tables and in bushes is avoidance in its rawest form. Fight or flight- avoid=flight! run and hide. Safety.
It doesn’t take a genius. Really it doesn’t. However it dampened the greatness which was knowing that ED PSYCH AND CAMHS BOTH KNOW WHAT PDA IS IN MY AREA. (And that is coming from a newbie CAMHS bloke too! I hate to admit it, but the CAMHS bloke was pretty cool… Shame they tend to turf under 7’s referrals and anything slightly vague)

Not got much planned for the weekend… Get my laptop back tomorrow, then TAC prep. Take Dinky to the cinema, or somewhere she would like to go… That or watch the smurfs Halloween for the 1000th time. (That isn’t even that much of an over exaggeration 😦 )

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