I live in a special needs emotional theme park!

Today after a long trip to chessington (which included some really cute, and really tense moments… But there are bigger things to write about, just this minute, I can update about our trip tomorrow!) I open the door and dinky barges past, and there is a brown letter (DWP by the looks of it) and a thick white a4 envelope.

I immediately know what the big envelope is, it is Dinky’s proposed statement of educational needs!

So I get her sorted and up to her room for her chill out time before going to sleep, tear it open, I was right! (I was also right about the brown envelope, a useless letter to say child benefit increases by 20p a week, I’ll be sure not to spend it all at once!)

Finally, Dinky’s draft statement had arrived.

I read the evidence first.

Now, if you read the schools stuff, pre statutory assessment stuff is pretty standard denial stuff, although more than a hint of PDA behaviours if you know what you are looking at. Then the stuff added for the statutory assessment is GOLD, I am so taking it to Dinky’s diagnostic assessment!
I don’t think there was a single page in the 15 pages of ABC charts that didn’t mention avoidance and refusal to take part in adult directed activity! Also some sensory and social communication difficulties!
Basically they could not have given a more PDA picture unless they wrote ‘dinky was a late talker, a passive baby and switches suddenly’.

How they fought so hard against it I will NEVER know! They have made themselves look like complete and utter fools! And completely contradicted themselves, they also show a lack of disregard for Dinky in the wording they use.

The medical side was the provisional diagnosis letter and 3 sentences, the one that caught my eye was how he put
‘Has provisional diagnosis of PDA (pathological demand avoidance) – atypical autism’

This was the first time that someone has put PDA and autism together from the CDC.

The other 2 state that she has high anxiety, severe behavioural difficulties and obsessive behaviour.
And that she has no other medical symptoms.

The rest of the evidence I knew.

The actual statement,

Well I must admit, I’m not exactly jumping for joy.
The term BESD is used too much. Although the special educational needs part says

dinky has significant and complex needs; her primary difficulty relates to her particular pattern of social and emotional needs that has led to a provisional diagnosis of pathological demand avoidance.

But the provision states

Dinky needs a variety of teaching approaches which take into the account of the difficulties associated with children experiencing behavioural, emotional and social problems

There are too many parts which mention BESD. I have a major hang up about it as her difficulties come from social communication difficulties. Technically it is right, but provision for BESD isn’t right for Dinky. The nurture group (an mini BESD unit), was completely wrong. She struggled so much. It was a disaster.
She DOESNT need BESD teaching she needs PDA teaching with more typical ASD strategies where it doesn’t interfere with specific PDA ones.

I have my work cut out but then I had to smile…

The parental preference form for placement had a post-it note attached.
“I know your preference is xx school, but can you fill the form in anyway”

I hope it is just a case of rewording some things. Although I have to work out how I go about that.

I also would like to get some clarification on certain points, which may help in other areas.

So another roller coaster.

I live in a special needs emotional theme park!

(I would just like to add that after having the document for 4.5 hours I already have a splitting headache, photocopied it, taken a highlighter to it, and realised how much of a pain in the backside it is to work out what the hell they were thinking when they wrote parts of it!)


2 thoughts on “I live in a special needs emotional theme park!

  1. Exactly what they said fir Dillon…BESD! Except they had no report from his unit that he attends and who had stated at a meeting we had that would be the worst place to send him as he distanced himself from kids with behaviour issues!!!!! It’s because they don’t have the right provision for kids like ours. They forget the behaviour is a symptom of an illness…. Once you get the correct environment , the behaviour is better. PDA kids copy such a lot. Put them in BESD and what will they copy!!!! We rewrote Dillon’s statement and told them if, after reading the report we included from the unit, they did not change the provision, we would need a meeting to discuss it! Haven’t heard back and it’s been 2 weeks!! Good luck at rewriting Dinky’s. remember SOSSEN have some fact sheets on how to rewrite statements. Xx

    • My major concern is that one day they try putting her in a BESD unit. Nurture is a small version, and Dinky did NOT do well there at all.
      The special school I want her to go to have said they want to take her and help her with her PDA.
      Good luck with the meeting when it surfaces
      Thanks for the info on sossen xx

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