School is going well and the fighting is over (for now)!

Don’t let the lack of posts fool you, there has been lots going on in our little world, I had meant to post some things, but I have been feeling out of sorts, so to speak.

Dinky has been doing really well at school, she is learning to write- again. I’m proud of her for attempting it with the staff at the new school, whom, I believe are starting to regret the quickness of their assumptions that Dinky could easily assimilate in a mainstream environment, maybe they did eventually get round to reading her reports and realised that Dinky has tried two mainstreams and the fact that with 2 weeks to go until the end of the second term, this is the first placement that by this point hasn’t actually made reference to her finding a new school now and that has made plans for her for the third term which, I am happy to say, do not include her on a part time timetable or excluded from the rest of the school. She is staying in the same class with the same teachers and mostly the same kids, for the first time in her schooling she will have continuity!

In the last week I have been invited to a sports day (well, a few events as not to overload them all), and a fashion show. The day was lovely, I was made to feel very welcome, which again, is very strange for me. I watched Dinky sit with the rabbits in the shared area, I watched her do water zorbing- which looked like great fun! I watched her (and was forced by dinky to take part in) a few races. Then I watched my beautiful dinky put on a dress (which doesn’t happen often, not only do I not particularly like dresses, but dinky doesn’t either) and walk with a TA down a little cat walk and do a little wiggle to the class anthem of the term. Everyone was bursting with pride at the achievement of all the kids up there on the stage. The staff really seemed to genuinely care and want to support Dinky, and as we moved through the school it was lovely seeing dinky interact with and be approached by, various students and staff members alike with great fondness. One lad in the college part of the school has taken a bit of a shine to Dinky as her new obsession is dinosaurs, she has always liked dinosaurs, but now they are centre stage, she has been to see the new Jurassic world film twice (she has asked numerous times to see it again) and has lots of toys she takes to school. He also likes theme parks, as does dinky, we did two theme parks in one day at the weekend, but I will come to that in a bit.

I also went to watch dinky do horse riding with the RDA, with school. She was utterly awesome on the horse, (although at the very beginning, did not like to be told several times how to hold the reins, and then got fed up and refused to even hold the reins for a few minutes). I just loved seeing her so happy on the horse.

As previously mentioned we have hit the Cinema a few times, to see Jurassic world and the minion movie. We also managed two theme parks in one day!

First we went to chessington, as we have been there so many times, Dinky is only interested in the rides. We went on all the big rides, but because it was busy we had to wait 30-35 minutes between rides and filled that time with smaller rides, but Dinky soon got fed up. Legoland isn’t that much further from us than chessington, so I gave Dinks the choices. A) go home, B) stay at chessington, or C) go to Legoland for the afternoon. Dinky chose Legoland and so off we went. We got there at 1.30pm the park didn’t close until 6 and we had 10 ride access tokens to avoid the queues. So we went round doing all the rides, as again, we have been there so many times, dinky has already seen the mini land and seen the 4D shows. She doesn’t like Lego friends as she says they don’t look like Lego people, so isn’t interested in the new heart lake city show. We did try the horse ride but Dinky said it was ‘horror’! Which made me giggle, but apparently not the right response. She didn’t like the fact that she felt squished to the horse by the back restraint. Normally she likes weight, but I think it was too tight for her.

The next day Dinky was utterly worn out socially, we went to the cinema to see minion movie, but afterwards she did nothing but complain and moan. Which is understandable, it had been a packed week at school and then a packed day the day before. Normally I take it in my stride but I had a headache and it just got to me a bit. Not that she knew that, but it did.

Personally, I am exhausted, not a good sign leading up to the 6 and a half week holiday. I managed to keep up the momentum fighting for Dinky, the education battle is done, the health battle is done (mostly, I have no idea what is going on now as she has been discharged from CDC and is ‘under camhs’ but I don’t see her ever seeing them again), and the battle with social care is over. Even a long standing battle with the disability living allowance is over and now I want to slump in a chair with a massive alcoholic beverage and rest. Somehow even though things are good, sometimes it still feels like  a struggle due to exhaustion and PDA hasn’t changed, just because the fighting has stopped.

I have sort of been resting. I have managed 6 series of house in the past 3 weeks thanks to Netflix, and I don’t plan on fighting anything else right now. Dinky has what she needs now, I am content.

I will help others in my area if needed with PDA Issues, although by some strange turn of events, the paediatrician that diagnosed dinky isn’t diagnosing anyone else with PDA, and the paed that said dinky wasn’t autistic because she looked at him and gave him a grape is now happily adding PDA to children’s diagnoses, I can’t work it out, but need to find a way to get the paed that diagnosed dinky to see the merit in diagnosing PDA for other children who exhibit the same symptoms. Also I whole heartedly refuse to accept the paed’s statement that dinky was an exceptional case, all children with PDA are exceptional cases, while dinky is completely awesome, she is no more deserving of the correct diagnosis than any other child.

Other than that, my fights are over. I’m sure there will be more as Dinky gets older, but for now, finally I can rest (well, sort of, I still have dinky to keep me on my toes, PDA is not a boring condition!)

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