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