If I should have my breakdown loudly or quietly?
I haven’t posted in a week or so because it has just been exhausting and frustrating getting through each day.
It seems that no one in the county council are actually bothered by the fact Dinky is not attending school as the new date I got for her amended statement is the 18th of July, the schools are given 15 days to reply, and therefore, considering schools are breaking up around the 23rd of July, they are not going to respond in time for an agreement to be made about Dinky going to school for September. Then because of the 6 week break, it looks as if we will not hear back from schools until September, meaning in all likelyhood Dinky will be going to school in October at the earliest, and even then transition has to be careful and done via starting part time initially.
The NAS school I went to see, well. I was a little surprised.
I love the ethos and the fact that they actually understand PDA is autism and that it is NOT another name for ODD!
But the building is run down, there is no sensory room, the outdoor play equipment doesn’t look suitable and the lack of technology is just a little surprising given that they are an independent special school charging LEAs for placements.
I could just about cope with the fact that the school isn’t what I envisioned, but the 3 hours it took me to get there because the trains were having an off week (they were at it on the Tuesday too), is just too much. If something happened and I couldn’t get there because our over priced and unreliable rail services are inadequate… I would hate myself!
I need to find something closer! There has to be schools which are stated as MLD or other schools which can take dinky! Why is it so hard to place a 6 year old autistic girl who is of average intelligence but can NOT cope in mainstream, even one with a unit attached?
So apart from the whole school thing doing my head in, I have made a new friend, but the friendship is not easy, she is lovely, but having a tough time. I find myself constantly not knowing what to say and just trying to listen to her without spouting out unhelpful things as the natural thing to do is to try and find solutions. I don’t have the solutions, I wish I did, that way I could help dinky too. I just come away feeling even more drained.
The 1:1 respite is slow to get off the ground. The first week we were awarded it, the lady was ill. So we carried it over and were going to split the 9 hours between the following 2 weeks. So, dinky had 8 hours on the Monday last week, followed by 5 hours on the Wednesday, and then 7 hours on Monday this week, however the other 7 hours for today… She text me at 2.35am to say she thinks she may be coming down with something.
So I have barely slept, as after dinky finally went to sleep at 11pm, I went down at midnight and then couldn’t sleep after that text.
How on earth was I supposed to break it to dinky that she wasn’t going to chessington with her 1:1?
Well at 5 am, I can tell you it DID NOT go down very well with her at all! My shins should be yet another shade of purple by this evening, as apparently it is MY fault that the 1:1 is ill… I’ll add that to my list of superhuman things I am at fault for then!
Dinky is currently having some bouncy time on her trampette in her room… I have had to explain after several incicidents trying to do seat drops that this trampette is just not big enough for things like that!
I had been taking Dinky to the local autism charity’s football thing on a Saturday, as predicted Dinky has declared all the big people there ‘bossy pants’ and refuses to go on the principle that she will a) not be told what to do, and b) that they won’t do as she wants and do ‘arsenal vs Chelsea’.
Although she has said she wants to watch a football match on the main pitch.
Dinky has been learning about the human body and has a new iPad app, she currently enjoys stinging it with wasps and tickling it with feathers to see the message going through the nervous system to the brain… She enjoys taking all the bones out, so the skin all flops to the floor… And over feeding it until it vomits and moving the gas through the large intestine and out of the rectum!
I’m not exactly sure that was the intended method to learn, but she is learning none the less!
I went to a listening session with the OTs and mentioned the fact that Dinky’s statement has been delayed TWICE because of late OT reports, and the second one was late because no one thought to do a home assessment instead of a school one after I took her out until I suggested it!
Back to the statement, which should have been finished nearly 6 weeks ago! It seems that although the law states they have 26 weeks, there seems to be very little information on how to complain about the fact that the local authority are obviously disregarding this current piece of legislation!
Oh and Dinky’s child in need meeting is going to be held at the old school! That should be very very interesting, and I will definitely be making my point very clear in regard to how badly they messed up, and I will ask why they haven’t responded to my apology request. This might sound rather childish or heavy handed, but even now their input is causing delays to Dinky’s education!
The only thing that slightly cheered me up today was the fact that redbull was on offer!
Sorry it is more of a tired rant, but I can’t write anything other than that at the moment…