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! 

Learning more about myself and autism with this new viewpoint

 

Getting the ASD diagnosis myself has really has lead to me getting a better understanding of me and has allowed me to do the things I have denied myself- like stimming. It is actually really calming and very productive, who knew?!?  obviously I knew to some extent but feeling it… different ball game!

It goes to show that reading about autism, or having an autistic child just isn’t enough to give you insight into living with the condition. It is one thing to say you let your child stim because it makes them happy despite people staring or telling you they shouldn’t be allowed to do it. It is something completely different to stand there and stim and feel that release and that positive feedback just by doing something like shaking your hands/flapping. All the times I have denied myself the opportunity to regulate by stimming seems stupid now.

I think it also has to be said that myself and Dinky are very different. We may both have a diagnosis of ASD, but actually we are poles apart in a lot of things. We share core difficulties, but our reactions and our levels of challenge are, like I said, very different.

For example-Dinky loves spending time with other people, she loves it, she struggles with the social rules, with needing to take control and with other social communication and interaction issues, but she still gets stuck in there wanting to play. Even at her age I was mostly alone, I didn’t really socialise. Now, well, I was talking to my therapist about this earlier- I thought my social isolation was purely because I knew I didn’t like being around people- trust issues.

Thinking on it more,  Yes, it is easy to put social isolation down to trust issues. However since I have started pushing myself to be more involved with the parent carer forum and helping parents who are in the position I was in, I have come to realise trust isn’t actually the issue.

The issue is my feelings of inadequacy due to struggling where all these people feel at home, knowing some people see me as odd, feeling uncomfortable when people try to force eye contact by twisting themselves and positioning themselves to get me to look at them and the getting frustrated with people’s small talk… like discussing the weather… I have spoken about this before to both the person that assessed me and my therapist today…

Both myself and the other person have obviously met at the place we are in, which means we both left our houses and unless we went in a blacked out bubble, we are both unlikely to have missed the weather, I know it is bloody raining.. I have put my window wipers on to see the road properly, plus we live in the UK, the weather is normally crap… so why do people feel the need to talk about it? And people call me odd!

Sorry to break it to you NT’s but you are also strange, you just don’t know it. Its like being part of a football team, wearing lime green shorts and long socks would be weird by itself but it doesn’t seem strange on a team where you are all dressed the same… you all have a fixation with the weather, it doesn’t seem odd to you because you all do it, but to me it is odd because it seems irrelevant, and I have to remember it is not an insult to my observation skills. Only when it is pointed out like this do some NT’s realise how bizarre it is.

Sometimes learning more about why I am the way I am is great, sometimes it is not great, sometimes it is downright confusing. A lot of the things I thought were due to PTSD, are actually down to ASD, and some things I just cant tell the difference, or sometimes I learn things like I did today.

Ok, previously I have read a little about shut downs, but I never really looked into them. I understood they were internal meltdowns, but didn’t know much more. Dinky is more of a meltdown person. She occasionally goes quiet and takes herself off to one of her safe spaces. She has a sensory den, she also has a tent with duvets and cushions in that she can sink into and feel more enclosed. I read these are good areas to have for an autistic child.

Well today I read Alis Rowe’s book on meltdowns and shutdowns (Alis is from the curly hair project), and shutdowns were in it. I read with interest as I know I have meltdowns, maybe not like Dinky’s any more, I did though- I was just as explosive and caused enough damage to school property when I ‘lost it’. It was always assumed I had ‘low frustration tolerance’ and ‘a short fuse’ and ‘anger management issues’… sorry to disappoint my teachers but they were wrong, I had a neurological condition that no-one was aware of and I wasn’t coping. Anyway, Some of sounded like how I feel in a ‘dissociative state’- ‘body is present mind is not’, ‘stare into space’, ‘blank expression’, ‘cant speak words wont come out’, ‘blacked out/numb’. I then went on facebook for a bit (as you do) and up comes a link to a youtube video from ‘autism awareness’ facebook page…

Yeah, this really makes complete sense to me and I totally get it, I often feel it.

I get overwhelmed by emotions that I cant name. It has happened in my therapy sessions too. I could never make sense of them, I knew I wasn’t having a flashback where I was remembering what happened vividly, or like last week which I definitely felt like I was back ‘there’ with no images. Shutdowns are like a dissociative state like with PTSD but different and I thought it was just part of the PTSD, it isn’t. A lot of what I thought were ’emotional flashbacks’ are actually emotional overload to the point of shutdown. I don’t lay on the floor and collapse but I do sit in my chair for hours not being able to move, and feel really tired after.

2 things

  1.  I feel really bad that I didn’t look these up properly when Dinky started showing signs of shutdowns.
  2. I feel like I am constantly finding out new things about myself and the things I experience. Things I ignorantly put down to something when it was something else. I am really going to have to try and notice more the differences between the PTSD flashbacks and dissociation and Autistic shutdowns and dissociation.

I think I have rambled enough for today…

 

I wonder what I will learn tomorrow.

Telling Dinky, PDA training and Amazing Annual review!

In my last post I wrote about my own ASD diagnosis. I did feel it was really important to tell Dinky that we both have autism in common. However, I did expect to tell her in a controlled and thought out way.

Nope, my dad accidentally spoke about it in front of her. I suppose it didn’t really matter. Dinky thinks it is awesome that we are both autistic. Which is cool.

This meant that way before I was ready, I had to put a note in Dinky’s link file explaining that if Dinky was to mention it, that it is true, I have recently been diagnosed with ASD. It isn’t that I didn’t want to tell the school, it is more that I wanted to get the report through first and then do it when I had got my head round it. It isn’t great doing it via a note in the contact book last minute- possibly at a meeting would have been better.

I never get bored of saying this- Dinky’s specialist ASD/SLCN school are bloody amazing!

Dinky’s teacher came to the PDA conference in November and is now going to be the one to deliver training to the whole school staff in April. Which in itself is pretty awesome- what is even more awesome? The fact that myself and another parent of a child with PDA have been asked for our opinions and input! It is brilliant! Ok, perhaps not the idea of my ugly mug on camera, but the general idea of us being asked questions about PDA and what it is like at home.

I think it just goes to show that a school that cares will make the effort to learn. Dinky’s teacher and her class team (because ‘TA’ doesn’t seem to cover the things these wonderful people do for the kids), are absolutely brilliant with the whole class that are all very demand avoidant even if they don’t have the PDA diagnosis.

The teacher always seems shocked when I say I am just so happy with everything. She is always asking if I am sure and apologising for Dinky coming back messy. I have to remind her that Dinky is happy to go to school and her being messy is proof that she is happy and joining in messy activities. Dinky is growing in so many different ways since starting at the school Dinky could come home in shorts and her coat after her uniform has been ripped to shreds by some activity and I would still smile and just buy another uniform. As long as Dinky is happy that is all that matters. That is all I have ever wanted. I don’t care if the school has lovely grounds, or filed all their paperwork or teachers are covered in flour (because lets face it- it is normally Dinky that has covered them in it!), if my child is happy, wants to be in school and is learning at what ever pace (progress is progress)- then I will be happy, majorly happy!

Contrary to the LEA and both mainstreams opinions, I am actually quite easy to please (well, according to Dinky’s teacher).

It was so nice before the review to be able to do my contribution and for it to be full of praise-not a single negative thing. It was nice to be able to use the review paperwork to once again say thank you to the staff for being amazing at what they do!

So on Annual review day I went in early to discuss the parent part of the training. I got there a little early and Dinky’s teacher came to get me (every few metres they have doors which can only be accessed with a keyfob). We waited for the other parent. The teacher had mentioned reading my note in the contact file. At first I had no idea what she was talking about. I didn’t realise until the other parent came that she was talking about reading about my news. She offered me an agenda for the Annual review, but by that time there wasn’t much point, but the thought was there which was nice.

We sat in a little room and went through some of our opinions and now the teacher is going to draw them up for the ‘interviews’… I’m still not sure about being filmed for it.

Then it was time for Dinky’s review. I received her review paperwork in the post a couple of weeks ago, we have recently had a LIAM (Learner Inclusion & Attainment Meeting), and I had also recently met with the Drama therapist… so there wasn’t going to be much discussed that I wasn’t aware of.

Dinky was supposed to join us but she wasn’t having any of it, although I was laughing a lot because I could hear her outside the room and she let off an enormous burp… to which I told the professionals there- she gets it from her granddad who loves nothing more than do gross stuff like have fart wars ect. Yeah, my dad hasn’t ever grown up!

She did eventually come into the room to hear just how far she has come. I absolutely loved it! Dinky has learnt more in her time there than she ever did at either mainstream, which is saying something given the slow pace and refusal of the staff to push her unnecessarily. I couldn’t be happier!

The staff liked that I was very happy.

After the Annual Review I got to take Dinky home in the car and spoil her with a take away and a new toy for her awesomeness.

I think Dinky is very proud of herself (as she should be, as I am and as the school is) and she is so much happier.

Yeah… its all good (just don’t mention camhs who we have an appointment with later this month- but at the school.)