‘Chat’ with the head, autism coffee morning, ignorance and swimming

Yesterday I got a call from school, this time it wasn’t an exclusion it was the office asking if I was free to talk to the head teacher this morning, just a ‘chat’. I was intrigued.

My day today started with the normal avoidance from Dinky trying to get ready for school.
“Not finished eating”
“Need to do this”
“But I want a drink”
“You said I can play lego” (Dinky is liking the lego at the moment)

Once ready, I took her to school. We got the bus down to the school, which is a new thing, but it stops the sitting “I’m not going to school”. One of the parents at the bus stop asked me if I worked, I said no, because dinky has additional needs and I am her carer, then she ignored me and was talking about me to another parent…. This is why I prefer going in through the office. I hate some of these parents, judgemental muppets!
We got in and the head (nicknamed The Muppet due to lots of very idiotic, horrid remarks and totally inadequate support coming from her staff) met us and took dinky into nurture.
I went into her office and the first thing she said was “not dinky, how are YOU doing?” Which caught me off guard as normally she couldn’t give a hoot about Dinky let alone me. However, the dynamic has changed slightly since he last TAC, she is still a muppet, but she seems different and more sympathetic to Dinky’s needs. Anyway. I replied that I struggled at the end of last week as it seemed every time I picked Dinky up she had no shoes on and was so anxious she couldn’t make the choice to come home. I’m human, I can’t always be the pilar of strength when we get minuscule support. There is only so much I can take, and the end of last week was very difficult for a few reasons.
She said that she was concerned, I had said I wasn’t going to bring dinky to school and I was heard telling dinky (not in my finest moment as a parent), that if she didn’t want to come home that much, I will go and then social services will come get her. Of course this was the completely wrong thing to say to her, not that she really understood any more than I will leave her. Which upset her all the more. I had just had enough that day.
Surprisingly she wasn’t about to call social services as I threatened to abandon my child. She actually said that she feels that we need more support, that I need more support. She said that she only knows Dinky in school, she doesn’t have to do the day in day out stress and behaviour. She told me she doesn’t have children so she can’t understand how much it hurts as a parent as they know that I’m not doing anything wrong, and she said that children tend to hurt the ones they love.
I was completely taken aback by the change in her approach.
She asked how things have been. I told her that we went back to pretty calm over Christmas, then, well, she only has to look at the reports from her staff to see how she has been since being back.
She talked about bringing the TAC forward, I said I doubt that is possible, and that there is no point as there is no support from the CAF. Dinky has been going to SN group for 2.5 hours a month during term time and 4/5 hours during the holidays since before the new CAF (the old one didn’t really get off the ground). Since then nothing has changed as outcomes from the TACs apart from the school sort of listening to professionals when it suited them. Nothing else has changed. I have done everything myself. I chase, I battle, I fight. On my own.
It just annoyed the hell out of me that she was showing concern after blocking me for months while Dinky suffered.
She asked me what my plans were for dinky. I told her that I wanted her to go to a special school. We have tried 2 mainstream schools and she has lasted less than 2 terms before questions were raised about the suitability. So I am going to look at a special school next Wednesday and another one when they get back to me… Or I get fed up and phone constantly until they get sick of getting calls and do as I ask. It seems to work for everything else!

I left it there, and got a cab to the autism coffee morning. I asked him to take me to the place, he said “the place with the lawyers?” I said “no the autism xx building”. He asked who has autism, I said Dinky. He was so ignorant. Said that she was smart and misbehaved because she was too clever for the work. He said she just needs to be challenged more. Yes because you KNOW my child just by me telling you she has a form of autism. Pfft. So I told him about PDA, I told him to google it and click on the resource page, but never assume all kids with autism are the same because they are not. Needless to say he didn’t get a tip!
The coffee morning was good, but I’m sick of everyone telling me that Dinky is “not that bad” or is “too bright for special”. Really? Is that why she is at foundation level ISH for maths and writing is falling behind in reading, ish because no one can tell what stage she is really at because they can’t do any standardised testing. She isn’t moving forward which means she is falling behind because she can’t cope with the demands of learning. But hey, why don’t we just keep her in mainstream! Oh and in a school that has treated us like rubbish so far until I say in completely frustration and at a very low point having had about 2 hours sleep ‘I will leave you here for social services’. I’m not moving her to another mainstream only for it to fall apart in 2 months and for her to fall so far behind that she notices that she is behind and uses that as an excuse not to learn more.
If not mainstream and not special, what is left? There are different classes in special. It isn’t all severe learning difficulties. Dinky doesn’t see age, one of the lads she likes at SN group is a good few years older than her, she just sees him as a boy, as a friend.
I would rather her learn less and be happy than feel over whelmed, struggle more and learn possibly a little more under duress. Of course the possibility is that although special would be a slower pace, that actually she learns more because she is happy. And more of what she has now will put her off school forever! There is only so long before she is unmovable and refuses.
Grrr, why do these people feel the need to tell me what to do with MY child. I was recommended both special schools by people who know dinky, who have an understanding of her needs.
I don’t WANT her in special school. I want her in mainstream, I want her to have the same education that all the typical kids get, I want her to have the same chances in life, I want her to go far. Guess what? I didn’t get them cards. So I am doing what is best for MY CHILD. if the special schools are not right, they will tell me when I visit, but other parents and sort of professionals can NOT make that decision FOR MY CHILD!

I go round town and get dinky some more lego with her DLA as she actually seems quite happy to build it, if I help and make sure I don’t provoke the PDA hulk.

I went to get dinky from school and she actually came out only mildly anxious. Which was a change from what we have had since she has been back. She was really good especially after she got another lego mini figure for coming out so nicely.

We built a house after she grouped the new lego bricks by colour and then built a house, each wall was a different block of colour, the front was black on one side of the entrance and yellow on the other, the left wall was red, the right wall was white and the back wall was blue. She was watching a lego programme on netflix while she played out the scenes using her new lego set.
I found Dinky only gets into things if there is a film or programme. She loved lego land, and the lego film,she has a film called clutch powers lego movie. She is loving the lego.

Tonight we went back to swimming, and she was calm from her lego play which was good, bit as soon as we got there, the crowds, the noise, the smell, the lights, she went a little bonkers to say the least. Once dressed she was throwing herself in the small pool before her lesson.
Her lesson was spent arguing with her instructor. When I looked over I noticed something. I noticed that although People said she “wasn’t that bad” and “seems bright” that despite it being an all special needs group with 7of the 8 children having an autism spectrum condition, she was the ONLY one who got 1:1. The two non verbal kids were together, the two Aspergers kids were together, and then a child with lower limb problems, and one Aspergers and one moderate autistic lad were all in a group together. Dinky was on her own and seemed to be the one who has made the most progress in the time she has been there, yet struggles the most. Is that a sign about the special school. That despite her seeming bright, that she will struggle but will make progress. All I know is that the group is run by 4 people with specialist training for teaching swimming to children in special needs schools. One put in their report of Dinky

having taught special needs groups for a number of years these comments are made with a fair bit of experience, Dinyk very definitely needs one to one teaching in her lessons.

Then as if on cue she has a massive meltdown I have to pin her down as she is trying to jump through me into the deep pool which is 1.8m. I then have to pick her up and carry her, she screams and everyone was watching us go through to the changing rooms. She tells me that swimming was so good that she didn’t want to leave. Which is great communication from her once she had calmed down, but she meltsdown before I can even try to help her. That transition is so difficult for her.
While we waited for the cab she was spinning, a few people were mesmerised and couldn’t believe that she didn’t get dizzy after going for 10 minutes straight, and were more shocked when she came running straight at me without veering off like the game.

She went to bed quite well tonight after her melatonin.

I’m exhausted, but I need to keep it together for Dinky.

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2 thoughts on “‘Chat’ with the head, autism coffee morning, ignorance and swimming

  1. You must be exhausted. I’m with you totally on the school front – there is no point pushing PDA children, it just makes them do less. A special school may just have the time and energy to treat her like an individual and as you say, help her to learn more in the end. May not be algebra, but who needs that anyway! You’re right, we don’t choose Special School as if it’s a great option, but juts because there’s a huge lack of other options 😦

    • Thanks Steph 🙂
      Yes I am shattered… but aren’t we all!
      School is a difficult one when you have a child who is more ‘high functioning’ teachers and other people expect them to be able to do what NT children do. But if they could, they would be NT.
      I liked what one of the PDA army members put up about low functioning peoples ability being overlooked and high functioning people’s difficulties being overlooked.
      If only our PDA kiddos LOOKED more disabled people would stop telling us what is best for our kids!

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