Today was the CDC appointment with the Paediatrician that gave Dinky her provisional diagnosis back in November.
The letter said it was an assessment appointment. I had no idea what to do, in October I took EVERYTHING I had that proved Dinky had PDA. I got reports from EVERYONE. obviously school gave a rubbish non committal A4 letter, and the class teachers extreme demand avoidance questionnaire was not very truthful, but everyone else put on what they saw.
I went into the appointment thinking the doc would want to see more of Dinky. He started off by asking how things were, and that he was sorry that the school were not playing ball, and that CAMHS had turned us down. He seemed to genuinely want to get the best for Dinks. He sau she also wanted to help me as ‘a child with PDA is not an easy child.’ Which is true. I love dinky but it is hard going at times. I asked what stage we are at in diagnosis and he said that he had seen enough (dinky had been trying her best to stop me talking to the doc and was being very controlling), that it is clear, black and white case of PDA. He said that the next stage is the social communication pathway which would just be either himself or the paed next door and a speech and language therapist. I asked him how much longer it would take once Dinky reached the top of the list, he said 1 appointment. He will give them all he has, which is a lot, and it is very detailed and collected in a ‘very professional’ way.
I must admit the next bit caught me by surprise. He asked again about school, I said it has been really tough, dinky has really struggled, and school haven’t helped her. He seemed confused. He said he thought the school were on board with his working diagnosis after the letter he got from the SENCO.
He showed me the letter, dated a week after his report. He said it showed clear PDA specific behaviours and more general autism behaviours, and actually seemed she had deep social communication difficulties that wasn’t clear before. It seemed they had a turn around. So I showed him the letters, 2 more exclusions after this letter, and 2 not recorded. He couldn’t believe it. When I told him she was in nurture his face dropped. He asked why, he said she didn’t have attachment disorder and actually threw his hands in the air in disbelief! I told him an ed psych was coming out on the 21st, he said he will get asked to put towards a statement and he will say that Dinky needs lots of support with her PDA, especially her anxiety.
We discussed the diagnostic procedure (as I got rather annoyed that this seemed to be a waste of time), he said this appointment was just to get an update and more time with Dinky, he said he has often thought of her as she is fascinating. He has only seen a few PDA kids but none quite like Dinky. He also said he feels for me as it is hard.
Dinky then got very over the top getting everything out, being demanding and a general nuisance. The doc seemed to enjoy it. He managed to get her weighed and measured this time as she was playing with the equipment and asked if she wanted him to tell her how big she was. Turns out my dinky is still dinky at the 25th percentile in height and weight for her age. She then began ‘cleaning’ I say cleaning, more like rubbing soap all over the sink and then putting the taps on full blast flooding the sink and soaking the floor! He said he was going to try CAMHS again as she needs input from CAMHS and help towards her behaviour and anxiety, as she is only going to get bigger. Not much longer passed and dinky took her shoes off and ran off out the door and we left it there.
Now I understand what happens with school and the shoes!
I managed to get her shoes on and we left to go back to school. She went back in fine.
At 3.01pm I got a call from school, which I missed as I was leaving my house. 5 minutes later I listened to the message. Dinky was on the loose and they were not going to open the gates until I arrived. So I went round to the office. Dinky was on the run and was extremely anxious. So much so she couldn’t even cope with the simple demand of walking home. I was hit with sticks, kicked, spat at, she was not happy. I tried to calm her down but everytime I thought she was calk she just jumped back up again to anxious. 45 minutes it took to leave school. Once we had left she was fine.
I found out on one of the PDA Facebook groups that Dinky had given the school the run around in the morning too before her appointment!
I then got a call from integrated services lady. To be honest, I am past caring what she has to say, she is passing over to SN group leader in February’s TAC (which was January’s but delayed).
Dinky was pretty good at home, getting ready for bed was an ordeal as always, and she didn’t actually go to sleep until 9pm.
Hopefully she stays asleep tonight as I could do with a few more hours!