Well That Went Well

So my promise to myself that I would write every day went really well didn’t it? It’s a problem I have a lot. My brain gets so full of ideas that I flit around not knowing what to focus on. I have been doing things but they just weren’t writing.

My house needs tidying so I’ve put energy into that. I’ve also been job hunting and that has taken up a lot of brain space. The whole process is incredibly draining and I still don’t have a job.

Still onwards and upwards. This morning I have my writing bug back so I’m going to write. I’ve already written an article for an online magazine I work for and I’m eager to write more. The problem now is to decide which of the 57 ideas I have in my head to write about.

Our normal is normal

Right now as I glance to my left I have 4 letters on my noticeboard from various health professionals that my eldest daughter has been referred to. No one has mentioned the A word to me but all the symptoms add up and I’m fairly sure that diagnosis is likely. The referrals add up as well, covering social skills and motor skills as well as behaviour. It feels so strange and I can’t shake the feeling of failure. How did I miss this for 12 years?

I was talking to my husband earlier and he simply said “our normal is normal for us” and I think that is likely the reason. It’s a sentiment also echoed by others who have been here. Almost all the little quirks and idiosyncrasies my eldest has I share with her. For instance the other week I went into her room on my way to bed and she was climbing over her desk. I asked what she was doing and she just said “there’s a noise” I didn’t even question why she felt the need to figure out what this random (and very quiet) noise was at 11pm. I simply stood still, listened for a second, then helped her find it. Once we established what it was I said “it’s ok, it’s a safe noise” and she just went straight to bed.

I only realised afterwards that other parents may have thought it was strange or weird but I didn’t because for me it wasn’t. I get out of bed so often to find noises that my husband doesn’t even ask what I’m doing now. If there’s any comment at all it is usually “noise?” “yep” “ok”. He doesn’t try to help because he can’t, his hearing is far less sensitive than mine and mostly he can’t even heard the noise. He doesn’t judge though, he just goes with it. He knows I won’t sleep until I know the noise is “safe”. It’s our normal.

I read an article a few weeks ago about there being a big pool of parents discovering that they are likely Autistic when they are in their 30’s and 40’s and start to see the signs in their children. They do some reading, do some research and realise that actually they tick all these boxes as well. I think it is especially common with mothers as when most of us were younger Autism was thought to be a predominantly male thing. It’s only now that we realise that it just presents differently in women and we are often better at coping and masking it.

All the things that are ticking the boxes that lead to me having these letters on my desk right now apply to me as well. It’s a very strange revelation to have when you have been on this planet for over 30 years. I keep telling myself that I may have missed these signs for 12 years but my own parents missed them for 30 years and you know what? I don’t blame them, they had no idea and neither did I. It’s only with recent research and understanding about Autism that we are realising exactly what it is and how it presents.

I have adapted a lot over the years, as we all do, but some things still confuse and panic me. I still struggle with certain things that I think I should find easy and I’ve spent years beating myself up over it. With the knowledge I have I can reduce that struggle for my child. I can give her a reason why she struggles with things, I can help her to adapt and I can show her how she can still make an important contribution in this world.

As the saying goes “if you’ve met one autistic person, you’ve met one autistic person” well in this house I suspect there are at least 2 of us and together we will adjust, adapt and overcome. I hope these coming months give us more of an insight into what we are dealing with but whatever the pieces of paper say we will adjust to it and adapt to it because we won’t give up. Our normal may not be your normal but it’s just as valid and important.

 

ASD and Me

This is my first serious post and I feel it’s important to get these basics down now as my journey along the ASD pathway with my daughter is an important part of who I am and who she is.

I had heard of Autism and Aspergers but I’d never really thought about it before August last year. It started on holiday when myself and my husband started to notice a lot of anxiety in our eldest daughter. We are both anxious people so weren’t necessarily concerned at first but as the holiday continued it got worse. We also started to notice other things we had not thought about before.

Our holiday involved spending an entire month together as a family 24/7 on a road trip around the US. I have catalogued the trip and will probably write more about it in future but for now I just want to get the basics down.

Whilst we were away our shy, timid and quiet eldest child really started to panic. We discovered pretty quickly that she couldn’t cope with unpredictability. I also discovered that neither could I. The ad hoc nature of our trip had to be abandoned, we extended our longest stop over and I booked all our hotels in advance.

We also noticed her total lack of social skills. She has an obsession that is quite childish that we expected her to grow out of. That hasn’t happened, if anything she is even more obsessed. It was ALL she talked about. We tried hinting to her politely to let someone else speak, we then asked very politely and then we just asked bluntly and honestly. It made no difference, she seemed to be totally oblivious to us.

The anxiety also increased as the trip went on. We spent 2 weeks in Orlando where we visited Disney. Despite being a massive Disney fan she was terrified. She wouldn’t go into the theatres or on any of the rides. The only rides we managed to get her on were the ones designed for 2 year olds.

Before the holiday there had been signs that she was different but we never really thought about them, after all she is exactly like I was as a child and I’m ok, right?

Aside from taking after me our home life has been turbulent the last few year. I have lost my mum and my grandma and my husband has been ill, now diagnosed as Fibromyalgia. Obviously all these things have had a huge effect on our children. It is understandable that the eldest may be shy, upset or timid. It was also expected that she might get overwhelmed sometimes. Her school are amazing and throughout this time they just supported her, cared for her and adjusted to her with no issues. I didn’t even realise how much they had done until a few months later when I was talking to them about it. They just treated her as a child who needed help and they did everything they could to make sure she got it.

When we got home I was talking about her anxiety and someone mentioned Autism to me. I had never thought about it before but I started to do some research. As I read up on Autism and Aspergers in particular two things jumped out. The first was that she ticked most of the boxes and the second was that so did I.

In August we took her to the doctors and after asking us some questions she referred our daughter to the local paediatric unit. They asked us for more information and this was the point that the pieces really fell into place. She has just moved up to Secondary school but none of her teachers really know her. I went to the primary school and asked for help. As we sat down and went through things we all realised that suddenly everything made sense. The paperwork was filled in and sent in just before Christmas and last week I got a pile of letters referring her to various services who will help us figure out exactly what she has and how we can help her.

Now I have those pieces of paper I am starting to wonder about myself. My eldest is a carbon copy of me and all these ASD traits I see in her I can identify in myself. Some are not as obvious these days as I’ve had years to “learn the rules” of social engagement but they are all still there. I’m fairly sure that we both have Aspergers but I’m currently unsure as to what to do with this information. Right now I’m worrying less about me and more about her. This journey is going to be long and I want to help her on her path before I worry about mine.

 

Why does it have to be apple?

So as you know my blog is shiny and new and although I am a photographer I don’t currently have any photos that are really blog appropriate so I’ve been hunting through stock photos. I started putting words like blog and writing into the search bar and I was struck by how many photos had apple hardware in them. Pages and pages of mac books and iPhones. What is wrong with a PC?

I actually feel slightly sorry for my PC. It seems that it just isn’t photogenic enough. If my desk didn’t look like a bomb went off on it I’d show you a photo. She’s a beauty. I have nothing against Apple as such, in fact I currently own an iPhone, but I never write on a Mac. I don’t even own a Mac, nor do I intend buying one.

I am a filmmaker and photographer and to lots of people that means you buy all of the Apple products but like I say, I don’t fit in the box. Most media professionals love Macs and Mac Books but not me. One of the reasons is a nasty incident involving 17 hours in an edit suite in the early 00’s with an old school apple mac but the main reason is because I’m a gamer. Try as they might Apple and gaming just doesn’t work.

Before you all get upset I know it’s come a long way but it just isn’t far enough frankly. I simply can’t play all of my 242 Steam games on a Mac. My Humble Bundle addiction can’t be cured and if I had a Mac I couldn’t even pretend that I’m going to play all those games I buy simply because they are so ridiculously cheap and one of them sounded awesome.

On my beautiful custom built PC I can run anything I like. My Adobe creative suite runs smoothly alongside my copy of World of Warcraft and the contents of my Origin account. My PC is shiny and has coloured LEDS. The keyboard lights up and I can change all of the colours of the keys. I have shininess. Just because my kit doesn’t have silver apples on it doesn’t make it ugly.

The keyboard is also big enough for me to properly hit the right keys without having my hands really close together. It’s a Corsair mechanical gaming keyboard and I love it. It’s comfortable and awesome looking. It also has enough buttons for me to fulfil all my macro based dreams.  Apple feel that the only acceptable size for a keyboard is far too small. I feel like I’m typing on one of those terrible bluetooth keyboards that you buy for a tablet.

Anyway I’m getting carried away. I just want to shout out to stock photographers and ask you to give PCs a chance. They have feelings too…

Good News Everyone!

This is my first blog post. I’ve set the tone at my level so I expect you all to have read the title in a Professor Farnsworth voice. If you didn’t please pop over to google and type in Futurama, Professor Farnsworth. Don’t come back until you’ve got the voice firmly in your head. Done? Right, let’s carry on as I want to use this first post to give you a little bit of background about my writing and why I started this blog.

I’ve always loved writing. In a world of academics I’ve always been a creator. I am an artistic person at heart, as long as you don’t ask me to create actual art. My skills lie in art that doesn’t require actual artistic skills like drawing or painting. I could draw but you would immediately be unsure as to who to complement on the picture, me or my 6 year old. No my skills are definitely not traditionally artistic, I am a creator. I love to write, I love to make movies and I love to take photos. Some aspects of each process I find harder than others but I am generally at my happiest with a pen in one hand and a camera of some kind in the other.

I have always written random things ever since I was a child and my eldest daughter does it now. I write totally random things, often for no one but myself. Over the years I’ve had stages where I have written a lot and times when I’ve not touched a pen in months. I have written screenplays, short stories, fiction, non-fiction, opinion pieces, ranty letters of anger, game and film reviews, plans, project outlines and even website copy. You name it and I’ve probably written it, at least once. The only thing that springs to mind that I’ve never managed is a novel. It’s just too big a project for me to get my brain around. I have 5 plans for novels that I have diligently written for NaNoWriMo but I’ve never got past about 2 chapters. Most years I don’t even finish the plan.

So here I am. With a blog. This blog will probably end up being a random collection of writing, because that’s how my writing goes. I want to start writing about things that are going on in my life right now but I also want to write about things that matter to me. I will try and organise myself to categorise my posts so that you can fish out things that interest you. So that’s my promise to you. If you are looking for honesty and randomness then you’re in the right place.

I hope you enjoy reading my brain downloads.