Today is PDA awareness day! It has been a year since I started publishing my blog rather than have it as an online diary, and what a year it has been!
we hadn’t seen the paediatrician, we had just moved schools, and things were all new.
Now- well, Dinky has a provisional diagnosis of PDA- final diagnosis should be 16th June, is out of school and has a proposed statement which will be finalised by the end of the month! I would not have seen any of that coming at this time last year.
I was going to write a post about PDA and how I came across it ect for the awareness day, but EVERYDAY is awareness day in this house, especially with Dinky at home full time, and the developments come thick and fast. these don’t stop for awareness days! So this is how today went….
After 6 hours sleep Dinky came into my bed at 5am. Between Dinky and the dog it was obvious that I was not going to get any more rest, so we all got up.
Dinky took one look at her visual timetable and got all anxious about the visitor who was coming out today. I explained that the lady coming out was just going to talk to me and talk about what we do while she wasn’t in school. She seemed ok with that. Hyper ball of hyperness was back, which is how she tends to be when visitors descend. So I was researching alternative placements for Dinky and slipping onto facebook at times (naughty me!), and Dinky was playing with her lego up until Sky’s walk.
I managed to find a childminder to have Dinky for me for the Child In Need meeting on the 28th and sent an email to the social worker. Dinky was back on the hyper, and was winding the dog up so I sent her upstairs.
I got a call from the social worker, she said that they were cancelling the meeting as it was in half term and hardly anyone could make it, as she is leaving at the end of the month it might not be her doing the hand over to Child In Need team, she said she really wanted it to be her. She asked how things were as I seemed pretty stressed out in my last email to her when I said I was close to sending Dinky back to THAT school. She said it did make her laugh, although she understands how stressed I must have been feeling. I said that I wasn’t doing much better as I was now unsure about Dinky’s future school placement. We discussed it and she was really nice about it all, we will find the right placement.
I believe my stress was obvious as she said she was going to talk to her boss and get back to me as she didn’t know what was going to happen now with the meeting and the social workers.
I got back on with it with Dinky. We did some lego building but she was getting the hump with me for not getting it right, so I gave up and let her play by herself. I got a call back from the social worker. Which was a shock to me! She said that she had talked to her boss and got approval to request 9am-4pm respite one day a week. She said it would be a foster family who are registered to care for kids with special needs, and she has requested that they have it on the same day with the same people and the same times every week. She said she had put Dinky as priority and that she has requested ASAP, although admitted that she doesn’t know how quick their ASAP was!
A social worker who actually tries to understand is a miracle! She said that she would keep in contact and let me know what is happening. I actually believe she will!
I phoned the parent partnership people, who are so useless! They said they couldn’t tell me which schools to look at, or which schools would even be the right category.
Then the Alternative provision lady came.
Dinky was her usual controlling, hyper and disruptive self when visitors come. We did manage to discuss the options after discussing the reason we were at this point. She did comment on the fact that the school have seemed to failed two children with PDA in quick succession!
I explained that I didn’t want dinky in a mini PRU unit they have, and the woman said she had read the EPIC 135 page document that went with Dinky’s referral. (I couldn’t believe it was that long and I had no input into it. Normally no one can be bothered with the paperwork and I end up doing it all! haha) She said that she wouldn’t dream of putting Dinky in there. She also said that from the paperwork she doesn’t think that providing a tutor to come into the home would work either. Which I agreed with. Home is Dinky’s safe space (and mine for that matter!), and it wouldn’t work. So they are going to look into a space to book for Dinky and asked if I would be the second adult, I said she wouldn’t listen if I was there. So they are looking into a second adult.. It will be 5 hours a week split over 4 days.
She did explain that it wouldn’t be straight into learning and they would take it slow, I don’t think they will get round to doing any learning but hey, its them that want to do this. We discussed Dinky’s favourite things and she commented on the fact that she will go back to her boss and explain how much I have in place for Dinky.
So… kind of a big day, we are getting there with respite 9-4 one day a week soon (ish), and alternative provision starting soon (ish), I’m doing all I can to find a placement for Dinky.
So I am not exactly raising awareness today, but trying to sort things out for my child with PDA, as we need to start from scratch really.
I look forward to next year… I feel things will be even further on than they are now!