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.)

 

 

 

 

Dinky and me takes on a whole new meaning

I know I have been quiet on here lately. Things have been a bit crazy, and not for Dinky- Although saying that her birthday party last week was very crazy but expectedly so with 7 children from a specialist school, 2 autistic children at mainstream and my typically developing nephew who was the odd one out. So, yes, it didn’t go to plan, so it was good that I had back up plans for my back up plans, and it went as well as could be expected, and in all honesty, I am very proud of every one of those children that came to the party, because for all of them it must have been tough- even the NT who was the one who felt different for a change.

It is always easier to write when things are going wrong, and things have been going exceeding right for Dinky lately which accounts for some of the lack of posts- but I have had a lot going on in my own life now that Dinky is at school. I am doing some voluntary work using the knowledge I have gained to help others and just doing something which isn’t actually about Dinky makes for a nice break.

So why does ‘Dinky and me’ take on a whole new meaning?

When I started the blog, it actually started with me trying to get support for Dinky when we were in a bad position in regard to housing, but autism had been brought up and this blog tells the story of our ‘journey’ (although I hate that term), from pre diagnosis and lack of support to full diagnosis of ASD-PDA, ADHD and SPD, and specialist school and full range of support services. It is primarily an autism blog, with a particular flavour (that being PDA).

Well, Yesterday after much umming and ahhhing I actually had an ASC assessment with my local NHS Adult Autistic spectrum conditions service…..

When I left, I left with the verbal diagnosis of Autistic spectrum Disorder/Condition- report to follow in the post within 2 weeks. Should make interesting reading.

So now Dinky and me are both diagnosed as being on the autistic spectrum. Which is not a bad thing.

To be honest haven’t actually had time to process it. Yesterday afternoon Dinky was back shortly after I was and then today I have been at a multi agency event as part of the voluntary organisation I volunteer for- so it is slowly sinking in.

So now I have to edit all the ‘about’ parts as not only is Dinky now 8, but also I feel it should be included that I am an autistic adult bringing up and autistic child with a PDA presentation, which may actually make a difference in how or why I have done or do what I do.

I will say this- it is really weird writing ‘I am an autistic adult’

 

Handed over to a new social care team

Today I had a meeting with the social worker and the new child and family worker. 

Not everyone gets a 1 hour hand over but I kind of went all panicky at another change in person when I found out that we were moving to a new team. 

Only because I heard it from a random source and had no idea what would happen.

Since I found out, the social worker told me a bit more and I felt better. Then I went to a parent carer event and saw the team manager, and I knew her, she came out to do an assessment for respite, and everytime I see her at events she asks how Dinky is doing and apologises for not being able to help. 

So we had the handover today. 

I thanked the social worker for her help, she has been good for us- actually- that team, from the moment they were involved things started gaining momentum… When they turned up I had pulled Dinky out of school the first time because they couldn’t tell me how they were meeting her needs- it was an impulsive and stupid thing to do looking back. I was just so stressed out and fed up of being right and yet watching them pound my square peg into their round hole- they were damaging her convinced she was a round peg that was just at the wrong angle. We had no formal diagnosis, just the provisional diagnosis. We had only just had the statutory assessment agreed. 

I was in fight mode and the social worker met that with understanding and did her best to get the bigger picture. She could have done the easy thing and listened to the school and blamed me- however she spoke to the paediatrician, to the special needs group leader, the integrated services woman, and Dinky herself. 

She spoke to me at length and the report was hard to read where the schools comments were added, but I was totally backed by everyone else. It was the first time unfelt I wasn’t fighting everyone. School were not happy, they made things very difficult so I tool Dinky out again but for good this time! 

The social worker backed me. Parents don’t usually go to the mapping meetings but the social worker said I was a fantastic advocate and understood the situation. She said that I was the best person to explain my decision and her boss would be there, the one who wanted to sign Dinky off leaving us with no support. The boss lady wasn’t happy with me saying “she will go back to ‘X’ school over my dead cold lifeless body!” But they agreed to keep Dinky on to give us support while she was out of school.

The second social worker started really badly- but she redeemed herself. She was instrumental in getting Dinky a place at her school. 

And now social worker 3 who just supported everything I wanted or needed for Dinky with a smile. Our first holiday, the blue badge (which has saved plenty of heart attacks with Dinky), charity funding for flooring when we moved into our new place. I forgive her for her maniac driving- really thought she was going to kill me on the way back from Dinky’s first LIAM at school! 

So the new child and family worker seems nice- apparently she is new to the personal budgets and is learning. That’s ok. I’m not sure I really need her help other than to OK things with the budget. Dinky’s budget will continue as normal, we are going to take another trip to Legoland hotel at Easter, and renew all her passes (Merlin, adventure farm park and seaside adventure park) but they are also going to help me get the garden up to scratch for Dinky. 

They were very nice and explained everything to do with the the handover and we discussed Dinky and her needs and where she is at- which is really good! Compared to last year the difference is amazing! 

I never thought we would be here 2 years ago! I just wouldn’t have thought it was possible! 

Now if I can just sort camhs…..