Rollercoaster ending in a BIG win!!!

I know I have been bad at updating the blog lately, however Dinky has been a royal pickle and after the 2.5 day exclusion we had a busy weekend full of ups and downs.

After the exclusion Wednesday and the difficulties getting her home on the Thursday after going to collect her work, Friday started well, but by the end of it she was bouncing off the walls and needed a release.

Saturday we went to a disability fun day at our local leisure centre, which was a bit rocky. We had 2 meltdowns which included me running full pelt out of the doors and catching up with her before she managed to set off the alarmed fire exits! My dad came and struggled to cope with her while I talked to the local autism charity. I had spoken to the lady before regarding the muppet family link workers suggestions. Apparently the story of Dinky’s informal exclusion is known throughout the whole county and into neighbouring counties, which I find amusing. Although when I told her what has been happening she was struggling to breathe! She said that she wished she had the power to go in and say “STOP!”. unfortunately she doesn’t, although it was an interesting conversation about the child development centre being 1 year behind in autism diagnosis, which is making the whole thing much harder.

Sunday…. awww, sunday was the special needs house chirstmas party… which had the BEST santa ever! If you have seen miracle on 34th street (the one from the 90’s?), then the santa could have been the brother of the gentleman who plays the santa in the film! Dinky refused to look at him, but he was very, very good with her! She enjoyed it there.. no meltdowns! although bed time was a major issue!

Today… Monday… PPM day…

I did not know what to expect. I was in floods of tears last night researching the nurture group and what it stands for. (I also came across the newsletter from 13th September which the muppet said that there are 6 children still learning to behave at the school…and there were 6 children in nurture! No prizes for guessing which 6 kids everyone believed were still learning to behave!).

Today was different. I walked into a room which was much more populated than her TAC meetings, we had The Muppet, deputy Muppet, Muppet senco, (surprisingly) integrated services lady, parent partnership, the head of educational psychology for the county and the head of Social communication team for the county who also sits on the SEN panel.

We started off with reasoning from the LA, not enough information about Dinky, about her academic attainment, no Boxall profile was sent ect.

Social communication lady asked about diagnosis, and I gave her a copy of the provisional diagnosis made by the child development centre, she said that fits. Educational psychologist seemed pleased by this information. He said that Dinky was discussed and there is no doubting that she is a complex case and has complex needs for a child of her age. There was a general sense that they wanted natural progression to occur with the school and advice given to the school from elsewhere. I did tell them that I had my doubts and that I had already lodged an appeal and the tribunal date was set up for April.

We discussed the diagnosis letter more and I said that it was difficult because CAMHS turned Dinky down as PDA is an autism spectrum condition, and therefore ‘apparently’ falls under the remit of CDC. That CAMHS suggested educational psychology report to be used to form a diagnosis. The educational psychologist said that obviously they are under a lot of pressure as a department, but that they will have to give some extra priority in the current list of priorities on the list.

We talked about academic attainment… this was hilarious, given that The Muppet had done everything in her power not to agree that Dinky has PDA, was saying that they found it very difficult to get Dinky to do any type of standardised testing which is why it was so difficult to get scores and why they vary so much for the ones attempted (honestly, I did supress a slight giggle), and said that would feed into the provisional diagnosis, as Dinky can be rather gifted with her avoidance and the social comm lady agreed! (I cant wait to hear what happened when she went into dinky’s school).

we went through to the Boxall profile, in which the senco said that Dinky’s profile didn’t score in the attachment strands WHATSOEVER, but she struggled with the social and emotional side. I piped up and said that the copy I received from the school had the questions answered as well as the profile chart and the questions she scored on were all but 1 PDA/ASD related.

Again I had to laugh at The Muppet, as she said that Dinky’s main issues were the desperate desire to be in control. To which the Social comm lady said… “yes that will be the PDA!”  WIN!!! And I was grinning like a Cheshire cat!

We talked about Dinky’s strengths. Which are her reading, which apparently still would not be considered as at age related expectations, the fact that she is bright (but you cant get it down on paper) and CAN be friendly and hold a conversation (albeit 4 interactions and she walks off or changes the subject). I did say that that was accurate, and that Dinky is a funny, adorable child, whom I love to pieces!

We talked about her weaknesses. Well, it all came out then, and I was trying so hard NOT to laugh at the face of the social comm lady and the educational psychologist as The Muppet spoke or from information send to the panel from the school. From the information the social comm lady had, she said Dinky found it hard to join in group activities, refused to do academic work, found unstructured times more enjoyable, the senco chipped in that as soon as it became formal learning, no matter how gentle the switch Dinky would refuse, ect… It was like reading from a PDA handbook, and the social comm lady said it all fitted with the diagnosis! The Muppet piped up with “The thing we struggle with most is her need to be in control and power, she would power seek rather than attention seek” the Social Comm lady came back with “Well, yes, that would be the high anxiety resulting from PDA.” I could have ghugged her right then as the Muppet’s face fell! I wanted to say “I told you so!” like a 5 year old!  The Muppet said “well, yes ok.” FINALLY!!!

We talked about speech and language, and we spoke about current provision, and I said it was very difficult as the Nurture group has a bad reputation, and that I didn’t feel it was the best place for Dinky. The information I got from the Nurture group network says it runs on attachment theory and principles, which isn’t a fit for Dinky. So the social comm lady made the school feel really uncomfortable by asking if they had provision in there especially for Dinky’s needs… a lot of erms, oh, and er erupted from the school representatives. Apparently they do it on the Boxall profile. The lady did not look entirely impressed and nor did the Ed psych! We discussed reintegration to mainstream which was interesting. Muppet said that 80% of kids went back after 2-3 terms, 15% went to special schools and 5% were permanently excluded. I said that I didn’t see Dinky being able to just reintegrate back into the mainstream class, as PDA is a life long condition and cant be fixed in a matter of 2 terms. I told them that I did say to the school in July that Dinky would find Year one harder going from play based learning to more structured academic learning, and I was proven right, but not even I had accounted for just how quickly things went bad, and how badly things have deteriorated. 3 exclusions in 4 weeks, could have been 4 in 4 had school not decide that she was actually able to remain in school on the 18th of November. Also that she COULD have been excluded more times over the last term, but the school worked hard to keep her in school. (I had to make out the school were doing all they could so that I can get her out!). The Social comm lady said school should set up a PSP.. Pastoral support plan, as Dinky was at considerable risk of more exclusions, which are to run alongside the TAC meetings, where I had a dig at the integrated services lady by saying that it all depends on who is actually going to be lead professional as we have become a few professionals light for future TACs.

I laid out some more things that I had regarding her education, and worries. The school brought up the wrist reins and her safety, and the fact that they are not equipped to deal with physically violent children, no matter what the diagnosis. Which is fair enough. I didn’t add that maybe if they tried harder with her, they may find she is not so volatile!

To sum up the Ed psych said that Dinky is definitely a complex case and with the fresh views and the new evidence, that it should go back to panel, and the social comm lady agreed. Panel is Wednesday the 18th of December!

In the meantime, January Dinky will be set up with a specialist TA from the social communication team, the social communication action plan and report will be done by then too. School have to do an ABC or star chart to see what the triggers are, find a way of either doing standardised testing or just send in what they can get Dinky to do on a good day if they catch her at the right moment, and set up the PSP. Ed psych should see her in the spring term, and the rest will have to wait until the outcome of panel.

All systems back on track!

 

EDIT>>>>

In all my uselessness… I forgot to put in the bit where The Muppet said.. “So we can use this diagnosis now to go forward!”

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4 thoughts on “Rollercoaster ending in a BIG win!!!

  1. I feel exhausted reading this, Dinkys mum! But hugely and warmly pleased for you and Dinky. A long way to go but at least it seems you have turned a corner in the right direction! xx

  2. whoop, whoop and whoop to you and ha ha ha ha to the muppets. Never giving up has forced the big guns to come out to play which means the school will now be accountable for their actions rather than running up blind alley’s and playing Russian roulette with Dinky’s emotional well being. Receiving the statement should now be a formality, wow what a bloody battle you’ve had against the most ignorant team of muppets imaginable who all reeked of false pride and self preservation regardless of the cost to you or Dinky. Enjoy the taste of victory, you well and truly deserve it xxxx

    • Thank you jane 🙂
      It has been a hard fought battle, and it isn’t over by a long shot… Hopefully the panel will see sense and offer a statutory assessment and then a statement… But we still have the battle with health getting the diagnosis formalised. Then there are the games of quantifiable intervention. I have learnt never to trust anyone in a professional capacity… Muppetitus can sometimes remain dormant until you feel secure and then can cause havoc from that professional. We shall see what happens in January. I came close to falling apart, but I have renewed power in the form of the new direction and the sheer support within the PDA community. I rant and moan, and yet every time everyone is there! Even if they don’t post a message, I know they are there.
      I hope things are more even for Mollie, and that you had a good time with your guest xx

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