Finished the boys portrait!

Here it is, months in the making and now, finally, done. Felt such a deep sadness painting this. Mikey has looked at it many times, then goes to look at himself in the mirror, gets distracted and ends up pulling silly faces at his own reflection. Sweet kid..never a dull moment!

Mikey, Speak..Oil on Canvas

Mikey's Portrait

Beautiful. Sad. Complex. Confused. Mysterious.

Mikey, Speak Oil on Canvas 18"x 24"

Autism - Strangely Beautiful

I see you, Michael. I watch you watching her, in the mirror. Hurts you to look directly at your baby sister, doesn't it? I watch you, in my memory I see words from reports floating across my vision...He Looks Straight Through People.......No Eye Contact......these words float past like leaves on a stream then fall off the edge of my vision. I watch you still. You always looked directly into my eyes Michael, not for too long but still enough to surprise me to hear the reports about eye contact.

                 Through the babies toy mirror, you watch her, see her every move, for the longest time you just watch her. Baby sticks her tongue out and blows a raspberry at her teddy bear, you bury your face into your hands and smile. Small pearls of pure joy for me!

Autism - 6 years on.

Communication has been one of our hardest issues. PECS..I guess a lot of people swear by PECS and Makaton, those are the common tools used in our Special Needs Schools. For us, neither were effective, as much as I complained and whinged about them not working for Mikey, I still went on the courses, made the cards and boards and for seven years waited for any kind of result. Much to everyones surprise (Mikey has a way of surprising a person, or unsuspecting spider!) Mikey has picked up on British Sign Language, he uses the few signs he knows appropriately and it has given him a form of communicating thereby relieving a lot of his frustrations. It was Mikeys carer Michele who introduced this vocabulary to Mikey and I. Again, she managed to do what seven years in a special needs school could not. I wish I could go back in time to Mikeys younger years, drop the PECS and Makaton on focus a lot on sign language. My advice to anyone who is going through the communication mine field with their child..try a sign language teacher, cant hurt to try.

And Summer Ends

Last day of the summer holidays. It is raining. Mikey is sitting outside, by his paddling pool, in the rain. He has had possibly the best summer holiday yet. It has been water, water and more water. He has, as is usual for school holidays, been hyper. But, this year was not as disastrous as previous years, probably due to his wonderful carers taking him away for part of the summer holidays. Also my little boy is growing up and with that a calmness he has never had before seems to be setting in. Mikey is understanding a lot more and has become my little helper around the house. Sleep will never be a strong point in our home, and so what, I'll sleep when I'm dead. Now, with a SafeSpace I can sleep even if he doesn't. Life, for a change is going ok. Let it rain now, everything is ok. Winter is coming and I know what to expect from winter.

Autism - taking a break is good for everyone.

Mikey on Holiday

The water boy is on holiday in France with his Carers. We got so lucky when we found Michele. Michele is a special needs Carer who is supremely good at her job. I think Michele was born with an understanding of kids with disabilities like Autism. Her empathy, kindness and loving nature matched with a no nonsense approach makes her the perfect carer.  Mikey has been with Michele and family for about 4 years now and he loves her to bits. She is the only other person in the world who understands Mikey like I do. Michele has two kids of her own, they are in their twenties and lovely people. Michele and her hubby cared for two severely disabled girls whom they ended up adopting. Mikey stays with them for part of the week and we mostly share the holiday time. This year on her family holiday she took the kids with.
                 Now, anyone reading this who is caring for a child with Autism and has ever attempted a holiday may feel a chill of terror at the thought of a "holiday". Not Michele! This woman is amazing, I kid you not. That family took Mikey under their wings and treat him like he is their own, that family gave us our lives back and my son is now a happy boy. Autism having a good holiday can be done!


Here are some pics of the water boy on holiday, totally in his element in France.

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?!

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!

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.

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.

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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.

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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.

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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!

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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.

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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?


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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..

Autism, essential check list for Parents and Carers.

Ok, so you have a child with Autism. It helps a lot if you have the following list of skills..

A great sense of humour, An extra set of eye balls (preferably detachable), the ability to cook unusual and occasionally inedible food, at lightning speed. You must be able to juggle several things at once, at least two of which are bound to be on fire.  A set of strong arms, extra thick skin and be able to sprint faster than a gazelle with a cheetah on its arse, at the drop of a hat usually in a crowded area. Be able to apply eye make up to BOTH eyes before leaving your home in the morning after two hours sleep (harder than it sounds.)

Should you lack any of these skills, don't worry, just wing it.


Autism is very complex and Mikey is classified as severe. Difficult as that can be there is so much magic to his Autism, and a kind of purity. For example Mikey can never be nasty, or a bully. Mikey cannot lie or be deceptive or be purposefully cruel, he cannot be judgemental and never does he discriminate. Autism does not care if you are fat or thin or if your skin is magenta or green in colour. When Mikey shows affection, which is often, it is genuine.  Autism presents qualities that seem so rare in most. Original thought, ideas. One of the issues we have faced often is finding toys that Mikey is interested in.
Conventional toys that are mass produced have no use for Mikey and offer very little sensory stimulation.
What Mikey loves. Beads, Mud, Water and...Bubbles! Oh the magical shiny, reflective, wonderful, drifting quietly away bubbles.

Walking on Air - Digital Photo with some post production done in Photoshop

We are fortunate to have many surreal moments. Like this one. At the moment I took this photo. Mikey seemed to be to be walking on air, he was jumping gently on his trampoline watching the garden fill with bubbles, When he reached the highest high he seems to hang in the air for a second as the bubbles slowly drifted under him and all that really moved was one big toe lifting into the air. Silence except for the low hum of the bubble machine's motor and the springs of the trampoline expanding then contracting with each jump. I could hear none of the usual sounds like birds, traffic, people. Precious moments to cherish. Thank you camera battery for being fully charged just when I need you.

A Screaming Mind A Silent Hell

Thinking in pictures, does everyone? I don't know, I know I do...feel emotions in pictures too. A painting like this one, I have spent no time considering composition, lighting, technique...no, an image fills my head and I put it down on canvas. After which I am able to understand what it is I was feeling, and why.

Pearls. Acrylic on canvas.

                           This painting is large and a powerful image, deeply personal as well as selfish. We all experience self pity and I think it is necessary to a point, doing a painting like this helps me to get away from self pity and move on. The Painting is all about consolidating my two great loves......a dream that will never be. Mikey and his needs come first, always. The anxiety, worrying, my mind screaming to find a solution to Mikey's care as an adult. What happens to him when I can no longer care for him, what do i do? I feel so desperate at times I could walk out my front door and stop the first person I see and say "Can you help me? Can you tell me what to do? Can you? No? I'm so alone.. Please will you then just hold my hand for a little while, please?"

Someday, being back where I want to be. Autism allowing no scope for that yet and the viper that is a constant threat, instead of being a helpful harmonious thing it is a venomous snake threatening to take. That, to me, was the so called children's services, an institution designed to be a beacon of hope and help but manage to do the complete opposite and most harm to the most vulnerable.

                     Living in urban jungle, assault to my senses, trash and noise and mean hard coldness. Working my butt off everyday to try and make it work......Loss and despair, and love and ache for family so far away is unrelenting. Africa, the kind of place that gets into your soul and beckons you back often a whisper on a breeze, sometimes a scream in a constant cacophony of sirens. The frayed animal fabric symbolises the decaying state of a country so beautiful but torn apart by greed and corruption.

Beads, orbs, pearls make their way into a lot of my work, these objects symbolise Mikey and my frustration at him having Autism, it plagues my mind and tears my heart into shreds. Mikey is very rarely without a string of beads, usually the plastic kids ones that I have to cut for him so it makes a long string. This is his comfort thing, to drop the beads onto a piece of paper, or cardboard (a flappy in autism talk) for hours and hours on end.

                    I wish I could slip into the coma of complacency that sees most people eke out their existences, not worry about the future but I cannot, I want more, I want a better life for my children and for them I will never give up. Autism has determined and dictated and I hated it at the time this painting was conceived. It is probably the most relevant to my frustration at Autism that I have done to date.

Autism and Social Etiquette..Bite Me! No, really could you bite me?

Around the age of four to five.

                At the very busy supermarket one fine day Mikey and I were doing grocery shopping. Mikey was attached to me via a wrist strap, the only thing that worked for when he bolts, which he does often and having no concept of danger has caused me several hundred mini heart attacks.
So, there we are at the fruit and veg, me looking for a lettuce "What the hell was I thinking?! Mikey will not eat lettuce! He has grazed my hydrangea almost down to the roots but put some lettuce on his plate will see it plastered to the floor, walls and probably my face!!"

                I felt a soft tug on the strap and looked at Mikey. In front of Mikey was, slightly bent over, a mini skirted long legged lady, Mikey had lifted her skirt up all the way to her waist and was having a really studious look at her now very exposed buttocks as was half the staff and customers at the supermarket. It was one of those moments where the world falls into a almost frozen in time silence. 

Before I could guide Mikey away the woman realised what was happening and spun around. I apologised profusely, she just smiled and said it was ok. Patted Mikey on the head and strode off.  All I could think was "Thank God she is wearing underwear! If I were you I would go home run a bath, and have a good cry! In Fact I think I will do that myself! Where is my genie's lamp when I need it to get me the F**k out of here? Arghhhhhhh!" .. Calmly, we went to the tills, paid for our lettuce, screw the rest of the shopping and left with what seemed like a hundred pairs of eyes watching us go.

Lesson learned, keep Mikey out of reach of innocent short skirt wearing people. Sadly for me, this fascination developed into lifting peoples shirts and also smelling crotches, oh so many crotches sniffed by Mikey I thought about carrying a recording of my voice, apologising.

               We lived in a small one bedroom garden flat for the first five years of Mikey's life. With all the difficulties we had, finding a bigger home to rent was impossible so I turned to my local council, I needed help to find more appropriate housing, I pay my rent but no private landlord would take us. Mikey is an escape artist, I need special windows and safety bars and gates and alarms and so many many things.

 

               The housing officer came to visit us and the interview went really well, the man knew of a housing association that dealt specifically with our kind of need, and he would make sure we got the help. A dead pan expression kind of fellow, not one hair on his head, big bushy beard and about six and a half feet tall (the man, not the beard). The man sat patiently on my couch and listened to me describe our lifestyle, and rattle on about the various difficulties we had, for about an hour during which Mikey attached himself to the mans head and shoulders and perched there, like a monkey and proceeded to lick the mans head. For 45 mind numbingly embarrassing minutes.

I laughed, on and off for about three years.

A rare moment where Mikey is looking directly at the camera

Autism..Sleep, What's that?

                   Mikey does not play with toys, does not watch tv, use a computer, play video games. Mikey is a hyper child and needs to be watched all the time. There is no break, Mikey must be kept occupied and it is exhausting.  At night when I am so tired, physically mentally drained is when, in a normal world, people feed and bath their children, tuck them into bed, maybe a bedtime story, not for us. After 5 years I managed to get Mikey to stay in his bedroom at night, at least. That equates to two years of Mikey screaming, kicking, scratching his face and causing absolute havoc until 4 am (most nights). His record so far is 72 hour tantrum with no break. Broken beds and smashed wardrobes meant all that was in his room was one big mattress. Curtains, then blinds, back to curtains pulled down and ripped every night. Holes kicked into the walls. Light fittings smashed, at night I had to trip the lights upstairs at the mains. Climbing onto the windowsill and throwing himself to the floor....the noise, so much noise, the screeching. Eventually he would fall asleep, usually in the corner or behind the door.
I would sneak into his room to make sure he was ok then sneak out and leave him to sleep where he was. To wake Mikey up and move him onto the mattress would mean no sleep at all and by this time I would be lucky to get two or three hours. Noise sensitivity in Mikey's Autism meant that even the slightest creaking of the floor boards would wake Mikey and send him flying into a rage. For the longest time I dared not flush a toilet when Mikey was asleep. I tiptoed and crept around like a ninja with blurry tired eyes.  The last time Mikey had a nap he was four months old. I tried so hard to calm him into sleep. I used to lay him down and comb his hair for hours on end just to get an hours sleep out of him. And the poop, so many nights cleaning and scrubbing sometimes four times in a row. Tried nappies, jumpsuits, all got ripped and torn.

        Toilet training took 10 years of constant battles, he is there but not 100 percent yet. Horrible subject but a severe fact of life for those of us having to try and cope with it. My hands were very often so raw, skin peeling off from all the cleaning. Latex cleaning gloves I'd developed a reaction to which means I got to choose from raw skin or small blisters everywhere...oh the joys! Nowadays when I see Mikey taking himself to the toilet, it makes me feel like a champion, victorious and so proud. So many told me he would never be able to do it, never make progress but he has proved them all wrong and those who care about him never gave up on him. To anyone who may come across this blog and are going through some of what we did, take heart dear reader because it does get better and everyone on the Autism Spectrum is a unique individual, they may share the same traits but are still as individual as everyone else on this earth.

I understand folks putting a brave face on, I also know that by not expressing just how difficult life with Autism can be, care givers have to work so much harder to get services and rights for their children because, hey, it's not that bad, is it? - Yes, it very often is.

Mother - Acrylic on Canvas 30" x 40"

Mother

                  The recurring nightmare. Every dream I had, over the top wonderful experiences like a endless water park with rides and rivers taking gleeful people down their gentle currents on big floaty happy tubes, trips to wonderful forests with good friends, a romantic evening in a park with a lover in the soft warm glow of japanese lanterns and blossoming cherry trees.....would suddenly take a turn into a scenario where  everyone was being pursued, hunted and viciously ripped apart and eaten by crocodiles.
For months the nightmares came then one day I saw the painting in my head, unfolding itself and I knew to paint Her would get her out of my dreams. I say "Her" where, in fact, Mother is a self portrait.
For weeks I studied saltwater crocodiles, watched everything I could on them. I knew what my composition had to be so I learned how crocodiles move, behave in order to render her without a reference photo. What you would face if you happened upon a crocodile's young...

In case you are wondering, ever since the crocodile made her way onto the canvas I do not have those nightmares anymore. However, I have to still get a hyper real life size bleary eyed Ninja to live at the bottom of my garden, I think I will call him "Guardian of the House of Flying Underpants".

Bubbles

Took Your Words

11 Years old now, and still, not one word.