Wednesday, 27 July 2011

Autism - I'm sorry Mikey!

Lately I have been feeling guilt. I call it the Umbilical Cord of Guilt. Michael has Autism and it is my fault, somehow. It is in my head and heart every second of every day. Guilt is not like self pity, it doesn't go away, strangles me but it also provides a kind of strength, I have to clean ludicrous things at stupid hours that guilt gives the needed impetus when my body is tired and my mind wants to slam shut with my eye lids.

               We are sitting in Mikey's SafeSpace, which is a room within a room, a soft walled big tent that zips up. In he goes at night and he loves his space, he cant kick holes in the wall, switch the lights on and off all night leap from the windowsills, and.. he sleeps. The SafeSpace has given Mikey the comfort he needs to settle at night. So, we sit  and I say "Mikey I'm so sorry. I love you son" My voice trembles and my eyes well up with tears, I'm fighting them back, I don't like Mikey to see me cry and it upsets him too. Not tonight. Tonight he leans forward, pats me on the head a few times and goes right back to dropping his beads onto his flappy. He pauses, looks at me then scooches over for a hug, kiss on the forehead followed by the usual good night armpitting. That's my face versus Mikey's armpit. My face very rarely wins these tussles but I still manage to convince myself that when I say "I am the boss of you!" his laughter means acceptance of my authority. (Yeah, dream on.)

 Having a disabled child not only means a lot of hard work it comes with the added bonus package of constant emotional turmoil. A rollercoaster ride of emotion and you cant get off, you learn to deal with so many things. Disabled, I hate that word so much now. That WORD in relation to Autism just doesn't seem or feel right to me. It is like calling a dog, who is not a cat, disabled for not being a cat. I think too much, yes I think I most definately think far too much. Where's the off switch?!

Thursday, 21 July 2011

Autism - Signing "Please"

Painting Mikey, as I am sure I have gone on and on about, is devilishly tricky. And I am not a portrait artist! When Mikey is confused, often when he knows he needs to give a response to a question, and just does not understand, he signs "Please", more accurately "Please, please, please". I can see he did not understand what was required of him because his expression gives a fleeting glimpse of not knowing, confusion and sometimes hurt.
Mikey very often does use the signs he has learnt appropriately and his receptive language skills have blossomed but then there are times when his mind seems clouded, foggy as if Autism wraps a wet towel around his brain.

Autism Speaking, Oil on Canvas 18"x 24"

This painting is not yet complete, I am posting it on my blog now because I know it will take months of tweaking and fiddling before I am happy enough to call it done. I find lately I am focusing a lot more on painting emotively, I strive to evoke emotion in my work. Not only by subject matter but by brush strokes and use of colour. It is a lot of thinking and getting to the place of pain to bring it out and re-home it on canvas. After which I will drown my sorrows in a glass of milk, cause that's how I roll.
I am happily immersed in learning new techniques, playing with glazing and transparent colours....watching tutorials on YouTube, great stuff!

Thursday, 7 July 2011

Artist know your subject!

The way I see it there are two kinds of Autism Art. The first is Art created by those individuals on the Spectrum, a quick google image search will bring up some truly amazing art. The other kind is the category I fall into. Art that attempts to capture the essence of Autism, living and breathing it. The magic, the surreal and also the ugly side, lets face it everything has an ugly side, even love.

                I have painted, sketched and photographed Mikey countless times. I would say at a rough estimate, only one in fifty images I create of Mikey capture the essence of him. I put that down to my limited understanding of Autism. I understand the basics and I understand Mikey, but Autism is something I cannot visualise, not the thing itself, not the neurological pathways, not the synapses, not the how or why. In my opinion the greatest portraits are of subjects the Artist knew, that intimacy shows in the work, that understanding of the subjects character and, of course, the mystery.

Water Me!

Mikey's favourite thing, and has been for years, is water. The colder the better, he likes to dip his head into various bodies of water, puddles, pools, dog bowls and yes the toilet when no other source is available. Mikey + Water = happiness. Of all my images of Mikey this one is the one I would have made into a massive poster for my wall. I captured him and his water as it is, to anyone who knows Mikey this image IS him.

Saturday, 2 July 2011

Autism and the Ugly side, of Others

My blog jumps back and forth in the time span of the last 10 years. The following are some conversations that happened over time, it is ludicrous what we have had to go through and it caused me a lot of grief and on that basis I feel compelled to blog about it, it aint pretty..such is life!

Is Mikey ok at school? Oh, he's fine then, no problems at all? Well I'm calling because he has not slept for more than five hours this entire week. He laughs maniacally then a split second later is enraged, throwing my dinner table across the kitchen, look, I know he is only five but when he gets mad like that, for no apparent reason and so instantly, he rips wardrobe doors off, has smashed the television and dented the fridge..and you say he is fine at school?
Ok then, terribly sorry for bothering you.


You are his pediatrician, Why wont you see us? We have had a diagnosis, yes, over two years ago and I need help, Mikey's behaviour is astounding! Ok then can you refer us to someone who will see us, give us another doctor? No? Why? It doesn't work that way? Oh, but I thought all children like Mikey got to see the community pediatrician? Right, you cant help us, well thanks.


Hello, this is the children's services? Hi, its me again, I have called you about a hundred times over the past three years. You once sent a social worker who offered us help then never returned my calls. Yes I know her name. She does not work there anymore and you don't know who we are? Right, ok, could you send someone else then, I am desperate for some kind of help here! Six months waiting list just to see a social worker to be put on another waiting list for minimal help? Best send someone asap then.

Hi, yes its me, again. We were promised to be moved up the waiting list about four months ago, I am really desperate here, please. So you wont be helping us now because you have no funding? But Joe down the road gets respite, quite a lot I believe just recently. Of course you cannot discuss other cases, parents do talk to each other, you know that right? Can we at least be assigned a social worker. Yes I know, you will get back to me...probably never, right?

All I ever asked for was the respite care we were entitled to.


Making a plan

Hi there, this is Mikey's mum. I believe the community pediatrician visits the school weekly, is that true? I am sending a package in, please give it to him on Tuesday then, when he comes there. Thank you.

I decided to make a dvd of Mikey's extreme behaviour in a last ditch effort to get help from the medical profession who refused to see us at all (hard to believe isn't it?).

Hello, yes this is Mikey's mum. Oh Hello Doctor! You watched the Dvd? Yes I know it is pretty shocking.........well the school tells me Mikey is just fine there, and quite frankly, that makes me feel like it must be me doing something wrong? ...No? You will go and see him at school tomorrow? Really? Yes I will come see you straight after...and thank you sir!


Doc - I observed Mikey in class, from a one way mirror wall, he could not see us. After watching your dvd I contacted a private child psychiatrist and brought him along. Within the first minute of observation we saw Mikey going from very excited happy to becoming very angry and throwing a chair across the room.
Me - right, the school reports no such behaviour and insisted to me that all was fine.
Doc - yes, we have called a meeting with the school and will formulate a new behaviour management plan etc.
Me - finally.
Doc - don't worry we will help you, but tell me how much help are you getting from children's services?
Me - none at all, apparently they have no funding, I have been on their list for three years now.
Doc - I see, I will be contacting them because I know for a fact they have received a lot of funding.
Me - thank you.
Doc - what about you, how are you coping?
Me - I am seeing a therapist weekly and taking anti depressants, I don't get sleep and I am in crisis, I am heading for a breakdown and I feel weak and pathetic, other than that I am fine.


Why did you tell me everything with Mikey was fine?

We have 80 children in this school and a two year waiting list

Yes I am aware you have 80 children here, I only have the 1, ok? And it is not acceptable that even 1 child slips through the cracks.

What I wanted to say was....I am scraping my forehead on the ground, grovelling in your Awesome presence whilst offering a thousand apologies for asking you to do your JOB. How, pray tell me am I ever supposed to trust you again?


This was the first small victory for us, with a lot of ups and down to follow, but at least we got one foot into the door of HELP. It is so difficult for parents exhausted to the point of breakdown to pick themselves up and fight the battles, just to get some help that they are entitled to...there is something very very wrong with the system and people have lost their lives by their own hands because those who's jobs it is to help, turn their backs and some even delight in doing so. I hope my blog will help at least one other person to keep fighting for their children s rights, don't give up. Our story is no less than tragic at times, and was unavoidable. More to follow..