Dinky is growing

I am constantly amazed by Dinky, more often since starting her special school.

She is just growing and achieving beyond what I thought was possible 18 months ago. Readers are going to start getting bored of me praising the school, but I cant thank them enough.

Dinky’s communication has improved a lot.. she has always been a talker but not a fantastic communicator, I learnt very early on that the two aren’t mutually exclusive. Now she can tell me when she feels sad and instead of running off, she will ask for something.

I laughed so hard the other morning when I had this conversation with Dinky (she was in a state of lower anxiety which was great)…

Me: Yes you can have a snack once you are dressed

So with my help she gets her t-shirt, pants and trousers on… and promptly runs out of the room…

me: where are you going? You’re not dressed yet

Dinky comes back to the door- looks at me with deep concentration on her face as she sees me holding up a pair of socks… She motions to her top and trousers and

Dinky: Technically… Dressed!

Me: But you haven’t got your socks on (I was trying so hard not to laugh)

Dinky: Not Nakie (naked)

She won that one- I tried so so hard not to laugh! I put her socks on while she had an apple.

I was just so proud of her being able to use a technicality to get her way. I know most parents would be annoyed, but technically it is my own fault for not specifying which items of clothing constituted being dressed and as she frequently runs around the house and school without socks- to her they are an optional extra.

Progress shouldn’t be monitored by exams and tests… it is the little things that can be a sign of great progress.

 

School questionnaires shouldnt rule out assessments

This seems really obvious, but week in and week out I am reading posts in Autism groups where schools are saying things are fine when they clearly are not.

I went through this with Dinky and it almost led to her not getting an autism assessment because of what both schools said- and now look at her in a specialist independent ASD school, the cost of her placement alone could pay for 27 mainstream school placements.

So why are schools given so much power over diagnosis… Money.

It is cheaper to send a non-medically trained teacher who probably thinks Sheldon Cooper and ‘rain man’ are 2 of the 3 variations of autism (the other being a non-verbal person rocking in a corner possibly flapping and with or without ear defenders on), who has spent a total of one teacher training day on autism, a questionnaire- than it is to send a person trained in autism to pick up the more subtle signs of autism.

This morning I read that a child is not being seen by CAMHS because she is ‘good’ in school.

I am sorry what now?

Since when does being ‘good’ equal not autistic?

Are autistic people bad?

No we  bloody well aren’t! We are more than capable of being ‘good’ and we pick up on all those things that others say about the ‘odd’ things we do and we try not to do them to fit in.

This poor kid is probably trying so hard to be like everyone else and it is that which is making her needs go unnoticed. But there will be signs that all is not as it seems. There will be social communication issues and interaction issues that don’t quite seem right.

A school teacher with 30 kids, lesson plans to do, homework to mark, a head teacher pushing them to meet targets, a senco asking what three different kids are doing and how their work is being differentiated, a school trip to plan and risk assess, and a class pet to keep alive- plus possibly a partner and children at home.. isn’t going to have the time or energy to look for these signs.

so the questionnaire comes in and the teacher says they don’t see any of the things from that child. That child doesn’t strike the teacher as much different to the rest. All primary kids have their little quirks, but autism? Then the paediatrician or consultant at camhs reads it and says ‘behaviour not seen across all areas… stick them on a parenting course’… and then goes for the next one in a bundle of ‘cases’ they got that morning.

I can see how it gets done, I see how these kids get missed, and it is only really the parents of the children who carry on banging or whose children get fed up of trying to be like everyone else it seems like their autism came ‘out of nowhere’… and THEN they get seen and diagnosed after a 2 year waiting list.

Money.

If there was more money for assessments then they could train people (or use LEA autism outreach/social communication teams – as the need is there so the child may well need support in school) to go in and make a preliminary report for the consultant. Taking the pressure off the teacher and a more accurate assessment of how the child presents in school.

It was just that, which got Dinky her diagnosis. Social communication team and the educational psychologist came into school and I was able to use their reports to prove that she showed autistic behaviours in school despite the schools insistence that she didn’t- even with the report they sent to the paediatrician which stated that she had trouble socialising, had behavioural problems, didn’t like change or transitions, didn’t like loud or crowded places and needed to be in control.

Schools are NOT autism specialists.

Often Parents believe that schools refuse to acknowledge because then they have to put in funding for things. They say there are no issues because then they have to use their tiny pot of money on support for the child.

Again it is all about money.

When is it going to be about the children?

Is it a wonder that often young people and young adults with autism suffer from depression and anxiety, when their needs have been dismissed for so long due to costings?

Would a teacher/head teacher/senco be happy if that was their child?

The school questionnaires should not stop a child or young person getting an autism assessment.

Genetics not parenting!

For those that follow this blog regularly or for a long time-you will know already how much I struggled in the beginning to get Dinky’s needs recognised. 

I was at a social care innovation meeting yesterday and the idea was brought up that I go on the video explaining the assessment process- I don’t have an issue being filmed in the general sense, but I do worry about people’s inability to see past appearance. 

I felt that people may think it wasn’t a child disability assessment service because I am often seen as a parent who would have other reasons for a social care assessment- like what the second school pulled.

I have mentioned before that I am seen as a ‘chav in a hat’, maybe not quite so much anymore since I swapped my Nike trainers for walking trainers, my typical baseball cap for a Harry Potter one with a ‘military’ style shape, and sometimes wear fleeces instead of hoodies, but the hoodies I do have are not sports brands anymore. It is sad that I felt I had to alter my apperance because people were judging my parenting and dismissing my daughters needs based on it. 

I will never forget both mainstream head teachers, not so subtly, remind me that I am working class and ‘less’ than them. 

That is me, and I’m ok with that, but when that is instantly used as a reason for a child’s struggles to the exclusion of the evidence before them… Well, that is NOT ok! 

I remember the feeling when I went back to the school with Dinky’s ASD-PDA diagnosis. It was brilliant! It was proof that my parenting was not the cause- the chav in a hat is capable of decent parenting. 

I will have to admit that they were right on one count…. it is my fault Dinky is ‘the way she is’ but not in the way they thought….

genetics- not parenting. 

Legoland hotel stay- coping with change 

For the past 2 nights Dinky and I have stayed at legoland hotel in Windsor. 

As merlin pass holders living 1 hour away from legoland, we are regulars! But not to the hotel because one of its very few faults is that it is quite expensive to stay over. 

Dinky has been very excited for the past month! She has been looking at pictures of the kingdom room which we had booked and getting very excited about it!

For the most part everything was great. 

Unfortunately Dinky really struggles with change to a routine. When we come to Legoland we tend to go to the ‘beginning’ and work our way down. However because we were staying at the hotel, we came through the hotel entrance. Dinky had it in her mind that she wanted to see the room, but that wasn’t going to be available until 3pm. 

As much as I tried to explain it to Dinky she was not happy and she became rather upset and began to meltdown (crying, rocking hard and not being able to verbalise). I tried to calm her but it was one of those situations where she had to ‘get it out’.

Once she was happier we managed to get her ride access pass and go on some rides before finally checking out our room. Dinky was so excited on the rides and she was super happy with the room. It was nice to see such a massive smile and some very happy flapping! 

We made it to the evening entertainment where she enjoyed some dancing, but when it came to the game musical bumps she just couldn’t take part. Whether it was a PDA avoidance thing or a not understanding thing, I don’t know, but she got rather frustrated by it, and ended up being on stage with the mascot Ollie the Dragon. Which she loved! 

But 45 minutes was enough and we went back to our room.

We had brought the weighted blanket with us and her favourite teddy, so she was happy to stay in the Lego bed. 

She was up in the night and it took time to reassure her that we were at the hotel and while it was different, everything was OK. 

The next morning Dinky again struggled with the way we entered the park, and refused to go on the early ride to begin with as she didn’t have her RAP yet as the guest services didn’t open until 10. I managed to convince her to go in the regular queue and she did, the queue was smaller than it was if we had gone later in the day in the RAP queue. 

Still, she wasn’t happy with the change and she insisted that for the rest of the day she was to go ‘her special way’ (which is what she calls the RAP queue). So we did and again she had a really good day, when it began to rain we went to the hotel pool and then back to our room for a rest.

By this point I was shattered and I needed a break too! So I welcomed her decision to miss the evening entertainment! 

Today was our last day, currently she is playing in the Lego pit in the hotel play area. 

She seems happy that today is the last day and that it is home time soon. 

Most kids are not happy to be going back to school, but we’ve had a fun packed 2 and a half weeks and Dinky can’t wait to tell her school friends, teacher and teaching assistants about her holidays!