What a week! (Parent event, zoo, hospital and diagnostic team SaLT)

I was meaning to write a post over the weekend, but didn’t get round to it, and then I couldn’t….

Friday:

I went to a parent carer event. I went for the 1:1 with the professionals really.
Spoke to some people who couldn’t help, DLA advisor and child disability social worker. The social worker was pretty rude and a bit of a muppet with absolutely NO common sense.
The I spoke to the diagnostic team salt, who was due to some out on Thursday (we shall come to that later)- she said that it was good to talk away from Dinky. She was really nice, said that she completely agrees with PDA from what she has seen, and the reports she has seen. She asked a few questions and then asked me how best to approach tasks with Dinky at the home visit so they can get an idea of where she is. (Which is bloody brilliant!) So I gave her some advice and we spoke about the statement as it doesn’t come across as social communication difficulties being the main issue, which it would be under the headings NOT BESD! She completely agreed and said “she has autism not BESD”!
I then spoke to the social communication team who also agreed that Dinky has social communication difficulties and not BESD, and were going to contact the SEN team to discuss it!
It was brilliant having people on Dinky’s side!

Saturday:

Dinky went to a birthday party, it was at the old special needs clubhouse and was very much ASD friendly. Dinky had a few moments, but did very well.

Sunday:

Special children’s day at London zoo. It wasn’t the same as last year, very much not bothered this year about making it special, it seemed more of an inconvenience to them.
Dinky really wanted to see the new tiger cubs but didn’t get to as there were too many trees in the way.
A few meltdowns, but dinky summed it up well by saying “next time- chessington”
Right at the end I got something in my right eye. All the way home it was driving me insane, almost as much as my dad was!

Monday:
I couldn’t open my eye and it was extremely light sensitive, to the point where I could only be in the living room with the curtains shut and my eyes closed. Not exactly the best condition to be in when you have a 6 year old and a dog!
My dad took the day off work as an emergency so that I could go to the walk in urgent treatment centre.
A few hours later the doc said he couldn’t see anything, to which I replied… Neither can I! With the local anaesthetic drops I could see better as the light didn’t hurt as much. But apparently it wouldn’t last and I was given some eye cream.
Told me if my symptoms changed or didn’t get any better in 24 hours to go to A&E which is either 2 buses (2nd bus takes 45 mins) or 2 buses and a train away.
When I got home I went to my room so I could keep my eyes closed. All I could hear was my dad and Dinky clashing, but there was nothing I could do.

Tuesday:

I went from being super light sensitive to being less light sensitive but with extremely blurred vision in my right eye meaning to actually see anything I had to keep it shut. So my dad came over so I could spend yet another day in a hospital… (Some people will do anything for respite lol)
The doc there was astounded that the doc the day before didn’t see the “MASSIVE corneal abrasion”. She over emphasised the ‘massive’ bit. I then had to sit up at eye casualty for a while, but it was nice and quiet.
He got the bit out of my eye and gave me some drops.
By that evening it was starting to feel better!

Wednesday:

Dad took the day off again so I could relax and not have to go out so I could rest my eye.
By the evening it was much less blurred. Dinky was not impressed with my dad being put in charge for 3 days, and Wednesday she had a massive meltdown of epic proportions, the likes we haven’t seen since she was at school. It was a mix of lots of things, but my dad tipped her over the edge.

Thursday:

Diagnostic team SaLT home visit!

I can’t begin to explain how weird it was to watch!
When dinky wasn’t being super avoidant, she came across as very autistic. She didn’t give eye contact, turned absolutely everything back to lego, couldn’t name a single friend but named the parts they played in her ice age game.
The salt couldn’t get dinky to do the activities, it was only when she completely ignored dinky and started doing one herself that dinky took part.
It was a sequencing story… Dinky put them mostly in the right order, but when the salt asked about the girl crying dinky said “because of the tigers” and grabbed her tiger and used it to flick the cards off the table.
I had to stop myself laughing!
The salt gave me a ‘oh my word, how do you get ANYTHING out of her‘ look!
More talking to dinky about lego… It was weird watching it working out how the salt was ‘scoring’ dinky.

In the end she said that the CDC team agree that dinky is best described by PDA, and that just an ‘autism’ diagnosis won’t lead to the correct support as it isn’t the correct signpost. She said the CDC are in meetings to discuss how to word the diagnosis but said she will get one on the 16th June!

She is going to come out during half term at the special needs clubhouse to see Dinky’s interaction with peers, but only to get a full picture of Dinky’s social communication difficulties.

So we shall see how it goes!

Today I have been trying to get hold of the sen team about Dinky’s statement which is due next week, we have no clue about which school will suit her, nor an idea about amendments!

I also got a call from a primary PRU about a place for dinky until we have a new school.
Yeah.., not happening!
So I have to find out what is going on with that!
Dinky has found out about a new lego series of toys ‘ultra agents’ and has emptied her piggy bank (of raided coins that were on the sides), plus the coin from her second tooth coming out, wants to go to the toy shop…. Wish me luck!

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7 thoughts on “What a week! (Parent event, zoo, hospital and diagnostic team SaLT)

  1. Hi I have read your comments with interest. First I do not have Facebook or any of the other chat etc I read that you wondered if it would be easier to get a diagnosis for your daughter had she been male.

    • Hi

      Well, I said if she were male and had a more typical autism presentation.
      PDA is hard enough, but for professionals, especially for non medical professionals, they see autism as a boy who plays by himself stimming ect, and with no imagination.
      What they don’t expect is a girl who can talk the hind leg off a donkey, who approaches and plays with anyone (albeit controlling) and loves nothing more than to reenact her favourite scenes from films and dresses up.

      Girls are more likely to be better at socialising, eye contact, mirroring and learning to try to fit in. Girls are less likely to be violent, destroy things or have the limited interests shared by boys such as trains (Thomas the tank) and cars. They see girls who love animals as typical and don’t generally look into the depth of these interests.

      Dinky was first turned away because she gave momentary eye contact and gave the paediatrician a grape, apparently “autistic kids don’t do that”.

      I still believe that we wouldn’t be this far if she hadn’t begun to struggle at school and begin to present like a male with the violent meltdowns

      You might find this interesting

      http://www.autism.org.uk/~/media/nas/documents/news-and-events/nas-conferences/pathological-demand-avoidance/pda-conference-plenary-session-jacqui-smith-and-judy-gould.ashx

      • Yep went to that at the Manchester Autism show last June. That is where I first heard of this condition and the link to autism. Yes I know what you mean. The lad I was working with comes across as very sociable especially one to one with adults and takes part in player games such as football (although banned from school team) basket ball and at present ice hockey. Autistic individuals are not meant to want to do this. It is all about perspective though isn’t it. It is looking at the way he tries to fit in. He tries to control the situation. He will even accept the rules if he believes the rules to be correct but only to be in control.

  2. Sorry not very good with this technology. Just wanted to say that I have been working one to one in isolation with a male aged ten for the past 3months Although I am a PSA ( TA equivalent) I have been desperately trying to persuade all the other professionals involved to consider a label of PDA instead of ODD to no avail. This week I’m off on sick leave due to an assault towards me by him. I hasten to add I’m not off because of the assault. But due to the frustration of the pupil getting a further exclusion against him and the lack of understanding by so called professionals who cannot be bothered or gain the understanding to give the correct support to these children. I appreciate that parents are thwarted at every level but on the other hand so are paraprofessionals such as myself ( I gained a postgraduate certificate in Autism and Learning) but I find that there are too many professionals out there who do not want to understand anything that deviates from the Triad of Impairments that they relate ASD conditions to. We know that autism relates to every child differently so does PDA except for one thing the behaviour is due to stress or severe panic. I feel for this child and his mother who is constantly labelled as a bad parent who cannot handle her child. So in answer to your question, it is just as difficult getting support for PDA for a male 10year old because the so called professionals believe they know best.

    • I totally get your plight.

      I completely understand your point, but you missed the fact I said ‘with a more typical autism presentation’.
      I am on a Facebook group full of parents of both boys and girls who struggle to get PDA diagnosed (PDA ratio is 50:50 unlike classic autism and Aspergers) some areas do not even recognise PDA exists. Our area does. My CDC have taken PDA on board because I fought them on it! Yet before they have even assessed dinky, they have diagnosed two boys with the condition.

      Maybe I should amend my statement to ‘in my area- if dinky were male and had a more typical autism presentation, it would be easier’.

      In my experience paraprofessionals as knowledgable and willing as yourself are hard to come by. Teachers and TAs are being expected to do more and more, with less and less.
      More teachers are having their souls sucked out of them and it is easier to label a child with any form of BESD than it is to go through an autism assessment. Which is wrong!

      The thing is by yourself and the boys mother using PDA strategies is what will make the difference to him. I couldn’t get anyone in education to listen to me. What so I know. I’m a just a parent.

  3. Yep and I have been removed from this pupil now because of the assault. Even though I tried to say it was because of a sensory issue and the situation. In my area they haven’t even heard of PDA and I do take on board what you were saying about girls presenting differently. I suggested PDA to his mum so maybe she will fight like you have I hope so!

    • It’s a shame you have been removed from him now as it seems you are the only person who truly understood him, which is sad.

      I’m sure his mum will want to disprove ODD if she feels it doesn’t fit her son.
      If you do see his mum, there is the PDA society which have a forum (they also have one for professionals) and on Facebook there are other parents she can talk to. Parents up and down the country are fighting their local authorities on the issue of PDA. Some areas are winning, like me, our CDCs are using Dinky’s case as a pathfinder for PDA diagnosis and there have been meetings about how to approach assessments as the ADOS and other autism diagnostic scales, do not highlight PDA. The disco does, but these talks are ongoing.
      It has been a rough ride.

      Maybe by engaging in the professionals forum, you can see how you could raise the PDA profile in your area for children like the lad you were helping.

      For what it is worth, I hope you don’t lose faith and have your soul sucked out in education, children need people as invested as you are.

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