It is getting close now.
I’m trying to work out what advice I have had regarding the appointment and which to follow as some of it was conflicting.
I have done the diary I have 4 weeks from January, which I have literally just finished typing up, and still have the blog posts I have to trawl through to find some more ‘evidence’.
I have the PDA folder which the integrated services lady said I should take. I have a report coming from the swim instructor tomorrow. I have asked for one from the integrated services lady but she hasn’t done it. The school sent the questionnaire back, but I have no idea what it says. They have my original questionnaire and I have other bits and pieces, like videos of spinning, of hands over her ears, of lining up toys in her own world, and most of all some demand avoidance ones.
I have the fact that Dinky is one of the 60% of children with PDA (according to research done by Elizabeth Newson in the 90’s) who has an adherence to routines and I have the visual timetable. We have the IEP which uses now and next and social stories. I also have the private speech and language assessment.
Is it obvious that I’m a little nervous?
I feel like I am going to go into court and have to prove my case, not a paediatrician appointment!
It is ridiculous!
If Dinky was more obviously autistic or had any other difficulty I don’t think it would be so bad. However Dinky almost certainly has PDA, but PDA isn’t recognised everywhere.
I have heard some horrible things when parents have tried to get their child’s difficulties recognised. The have been sent on parenting courses, been told that it doesn’t exist, that they only have traits of ASD/ADHD, or have ODD or an attachment disorder. It has taken some of these parents years to get anywhere, and sometimes that isn’t far enough.
So many parents have been forced to pay privately to find out what is the cause of their child’s difficulties. Which is disgusting.
I think I will be on edge until it is over. But then I will be on edge until the next on!
Today was back to school and Dinky was not impressed. We started getting ready at 6am after she went to sleep at 10.30 last night.
She has spoken to me in two to three word sentences all the time we have been together today. She wouldn’t let me leave school because she didn’t like the fact that her teacher wasn’t there. Her coat peg picture has disappeared.
When I went to pick her up there was a form for the school trip!!!
So I have filled it in and will be paying for it tomorrow! I am so happy for Dinky. She can do what all the other kids are doing and won’t feel left out this time.
I will ask what the arrangements are for the trip tomorrow.
Dinky spent the afternoon with the blanket over her head on the sofa watching tv.
I think she actually fell asleep at about 9.30ish tonight.
I don’t go up with her, if I did she would use me to stay awake.