My grand son, Isaac gave me a kiss yesterday. This might not seem like a very big deal to most people, but to me it was one of those golden moments, where I was left with the taste of strawberry lollypops on my lips and love in my heart.

This was my very first proper kiss, willingly given and I will store this memory up and savour it.

Isaac is 33 months old and he has Autism. Isaac does not like to be touched.

When I visit, he will eventually come and sit next to me on the couch but if I go to stroke his hair or touch his hand he pulls away from me. So we sit side by side and talk of small things.

My grand daughter, Amy on the other hand launches herself at me and sits on my lap and chatters incessantly about things that matter to a five year old. Her dragon fly mind, flits from subject to subject and I relate very strongly to this child.

I look at Amy’s sensory seeking behaviours and I see myself mirrored there, I like to touch things to see how they feel. I like to occasionally touch people as I am talking to them as it gives me a better sense of who they are. I like to feel the world breathing with me.

Quite by chance I had bumped into my daughter Veronica at a shopping centre, as she was getting ready to leave, Amy gave me a big hug and a kiss, I looked at Isaac and said, “C’mon Isaac give Nanny a kiss goodbye”

Isaac actually walked over to me, raised his little face to mine and gave me a proper kiss right on the lips.

A proper kiss.

On the lips.

It was sweet.

As he raised his face to mine everything slowed down, there was only this little boy who I love with all my heart and I,

In that moment, just for that split second it was only the two of us. I gently kissed my grandson and Isaac kissed me in return.

I will savour the memory of this kiss as I reckon it will have to do me for a while.

Now my lovelies that I have shared my joy, I must finish packing my bags and head to the airport.

I am attending the problogger event in Melbourne tomorrow and if you are there and want to say hello I will be the one floating two inches above the floor with my memory full of strawberry kisses.

Good morning internet, how are you this morning? I woke up this morning and the first thing I thought of was that last night, I publicly announced that I am participating in the Worlds Greatest Shave next year. I have been known to cook up some seriously harebrained schemes late on a Saturday night before this one.  The difference being that all those other schemes generally involved alcohol and ran out of puff when I woke up on Sunday and remembered what I had done and then hoped like hell that no-one remembered my rash promises.

This scheme is neither harebrained nor rash. I am committed.

So my lovelies, shall we make a date for Saturday the 17th of March 2012 and I will shave off my hair if we reach my goal of $5000

Now back to today’s business of sharing photos that might otherwise be consigned to spending the rest of their days in a dusty folder in a forgotten hard drive.

The Blurb

I take a lot of photos and most of them are just sitting around in folders on my desktop not doing anything. I thought that a dedicated post once a week would be a good way to share some of these photos that otherwise wouldn’t be seen by anyone other than me.

I am also remarkably absent minded and I put photos into folders and think that I will publish them later on and then then I never do.

So I have started a photo meme that anyone can join in and play as well. The rules are so simple as to be virtually non existent.

Just add your name and URL to the Mr Linky.

Publish your photos on your blog using the “Sunday Selections” title.

Link back here to me.

Easy Peasy.

The Photos

I went looking in the external hard drive for one of my favourite images of Amy as a toddler. Two hours later I emerged without that specific image but with these photos instead.

This is my grandmother on Christmas day 2007. It was really, really windy and Nan is trying to stop her tequila and orange from being blown out of her glass.

This next photo is of my Mum and Amy in my Mum’s kitchen. They are both enjoying being naughty as Amy isn’t allowed on the benchtops.

My daughter bouncing on the trampoline with her daughter.

And a photo of a summer sky to finish up with. I am yearning for summer I have been wearing shoes for far too long and I need to feel the earth between my toes in order to properly listen to the hum of the universe.

If you would like to join in with my Sunday Selections meme I would love to have you on board.

The Blurb.

I take a lot of photos and most of them are just sitting around in folders on my desktop not doing anything. I thought that a dedicated post once a week would be a good way to share some of these photos that  otherwise wouldn’t be seen by anyone other than me.

I am also remarkably absent minded and I put photos into folders and think  that I will publish them later on and then then I never do.

So I  have started a photo meme that anyone can join in and play as well. The rules are so simple as to be virtually non existent.

Just add your name and URL to the Mr Linky.

Publish your photos on your blog using the “Sunday Selections” title.

Link back here to me.

Easy Peasy.

I spent my whole parenting life raising my children to be independent free thinkers. I raised my daughter, Veronica to be a strong feminist, not by quoting her tracts from Greer or De Beauvoir and hiding the razors, but by example. I tried to show my daughter that all you need to succeed in this life is determination and hard work and that no man or woman can tell you what you can or can not do within the bounds of the law.

My daughter has found her own path, she is marching to the beat of her own drum and is now raising her own strong willed daughter, Amy. The more my grand daughter grows into her personality the more I see myself reflected there and I am equally terrified and exhilarated.

As a child I fought the restraints of parental control every step of the way. Every single curb was met with a defiant why? Followed up with a detailed counter argument as to why I should be allowed to do exactly as I pleased. There was much wailing, gnashing of teeth and dramatic flouncing and I now know that I was an extremely difficult child to parent.

Primary school was the single most isolating and lonely place I had ever been forced to endure. High school was just an endless clash of wills, with the Catholics determined to teach me to submit and to accept without question the ridiculous notion of a virgin birth and the subservience of women to God’s law. I didn’t like to break the rules by walking out as overt rule breaking makes me extremely uncomfortable, so I just endlessly argued against everything instead.

I faked illness after illness to avoid going to school so that I could just stay home and read in peace all day. One faked illness went a little bit too far and at age twelve I had a perfectly good appendix removed. Of course I lapped up the attention a stay in hospital brings but unfortunately for me I didn’t have any more disposable organs, so that avenue of school avoidance was closed.

As my grand daughter grows up I hope like hell that I live for at least another twenty years to see her through the challenges she will face. And this is where Mum’s untimely death has left a huge hole in our lives. Mum related wholly to Veronica and was Veronica’s support person where as I relate wholly to Amy and I am of only minimal support to Veronica as I relate far to strongly to my grand daughter. I am forever looking to explain or question why Amy behaves the way she does instead of just giving my daughter my sympathetic ear.

In this life you just have to make the best of what you have and try to understand each others limitations.

I am pleased that the education system isn’t as rigid as it was in the seventies but I still worry that there are far too many children out there that are getting lost in the system. I know as I watch my daughter parent her two quirky children that they wont be swallowed up by the machine but I still fervently hope that I am around to throw a few spanners in the works just in case.

That is what I reckon this post will be, all muddled up without a coherent train of thought running through it to pull it all together. But that is life. Life is messy and muddled and I just make it up as I go along and hope like hell I am doing the right thing.

I started to write this in response to my daughter Veronica’s post, about her grief and her sense of aloneness in all she is facing at the moment.

I had a long talk with Veronica yesterday, as we do nearly everyday. She prepared me for the content of post that she had written knowing that her sadness would make me cry. My parting words to her in her aloneness was the only truth that I could give, that at the end of the day she is “The Mother” and she just has to suck it up and get on with her life as best she can.

The only comment I could leave her after I had read her words was, to just keep on putting one foot in front of the other.

Because that is all we can do, just keep on plodding along.

The Ehlers Danlos Syndrome makes everything doubly hard for my little girl and then you throw a sprinkle of Aspergers into the mix and I don’t see any easy days in my daughter’s future at all.

So there is grief on top of grief.

Grief for all that we have lost with the early death of my Mother. Mum was an energetic whirlwind of a woman. A 5 foot tall bundle of contagious, hands on practical energy. Her catch cry was, “Lets Go!” and go we all did, swept along in the wake of Mum’s enthusiasm for life.

Grief for the loss of easy children, with simple answers for Veronica. We all want our children to be happy and sometimes the despair I hear in Veronica’s voice is enough to bring me undone. Again.

There is also Anger, frustration and  a good serving of stress to top it all off.

I am slow to get angry but when I do my anger is like a flash fire, hot and fierce and all consuming. I am an Aquarian born in the year of the horse and my Chinese element is fire and apparently for those that know these things I am true to my signs.

I can feel my anger building. Anger with those that make my daughter’s life hard. Anger with members of “The Spouses” family who wont believe that EDS is real. And a general delayed anger that my Mother is dead because everything would be a hell of a lot easier with her here to help.

I believe in truth and for those medical professionals and assorted bystanders that don’t want to hear my truth, your denial isnt going to stop me saying the words and fighting for the best outcomes for my family.

Ehlers Danlos Syndrome isnt an easy illness to deal with. Ehlers Danlos Syndrome is pretty much invisible and those with EDS are used to being in pain, or feeling sick all of the time so they don’t make a fuss. But as the mother of two EDSy children and an EDSy spouse it is very hard for me to watch and feel helpless in the face of their illness. So I do the only thing that I know how to do and that is support my immediate family and  try to educate other people about EDS.

I simply do not have any emotional energy to spare for those people who are unwilling to make an effort to understand what my family are going through on a daily basis.

The Spouse can not stand for longer than five minutes at a time without feeling like his hips are going to fall out and his back is on fire. He put up with this pain for a long time and was starting to spend longer and longer in bed because it was the only place he could be pain free. Until I dragged him, unwillingly I might add to our family GP and organised for him to have better pain relief in the form of slow release morphine patches. The Spouse has your typical Aussie blokes attitude to doctors and wont go to the doctor unless I push it. The Spouse’s remedy for his pain is to just drink more beer and hope it goes away enough so that he can sleep.

For a man with a very strong work ethic it is very frustrating for him to be limited in what he can do and that frustration often presents as aggression.I don’t take any notice of the grumpy old bugger when he is having a whinge and his anger whilst loud, is mostly directed at himself.

The parts of your brain that deal with pain are right next to the parts of your brain that deal with anxiety. So pain and anxiety go hand in hand. The Spouse hasn’t been to any of my exhibitions as he doesn’t like crowds. He wont go into the city and the only time he willingly leaves the house is to go fishing.

Both my children have varying levels of anxiety as well, this is all part and parcel of the Ehlers Danlos Syndrome.I am hoping that the psychologists at the pain clinic at the hospital can help Veronica without having medication that turns her into a zombie.

As I wrote earlier when you throw Aspergers syndrome as well as Coeliacs into the mix it makes for a very challenging headpace. I am missing my mother dreadfully and I worry about my grand children a lot. So I throw myself into my work and join another committee, set up ceramic blogs and facebook pages so that I don’t have to think too deeply about the future.

And then my daughter Veronica will patiently correct me again. I will feel slightly guilty that by not immediately understanding all the minutae of Amy’s Aspergers and Isaac’s developing issues I will have put more pressure on my girl.

But that is life and at the end of the day no matter how frustrating my responses to Veronica’s statements are. I am her mother and she loves me.  I will just pretend that I don’t hear the exasperated sigh in her voice as I try and find strategies to help me cope.Whilst I can empathise, I can’t really relate to the difficulties that Veronica is facing parenting Amy, as Veronica was an exceedingly easy child to parent herself and time softens the memories of the hard bits.

I am on a bit of a journey at the moment to readjust my thinking in order to help my grandchildren live in this society of ours with the minimum amount of stress. By stress I mean stress to the children not anyone else.

I was reading this post, “Portraits of Autism#10″ and it helped to adjust my thinking slightly again. And that is what is important here, that I adjust my thinking and expectations.

As a society we expect our children to be perfectly behaved little robots that should be seen and not heard. Children shouldnt disrupt our lives too much, as they grow into perfect young adults who move out and have successful lives of their own. Leaving us to pick up the threads of our own perfect lives with plenty of time to do all the stuff we put on hold when they were small and needy and unrobotic.

Life isn’t like the magazines would have us believe though. Life is messy and ugly, chaotic and beautiful and perfect is incredibly boring. Blogs like Casdok’s, Mother of Shrek help me to re-adjust my thinking. New friends like Marita help me with strategies and Veronica patiently tells me the same stuff over and over until I have grasped some of the complex realities of her life.

I have no idea how I am going to help my grandchildren cope in this difficult world they inhabit. Like most things I do in this life of mine, I am just making it up as I go along.

I am sitting in bed in a cabin in a caravan park, my laptop is balanced precariously on my knees and I am trying to write outside of my comfort zone. I only have picasa installed on the laptop and not being able to edit my photos how I am used to is bothering me much more than it should.

I stopped on the side of the Midlands highway just outside of Campbell town yesterday to talk to my daughter Veronica on the phone. As usual most of our conversation was about the apple of my eye, my grand daughter Amy and Aspergers.I took this photo as the trucks were roaring past my window, shaking the car and shaking me.

I am here in Launceston for the Junction 2010 Regional Arts Conference and Festival. I have been sent up here as a delegate for the Greater Green Ponds branch of Tas Regional Arts. This is an amazing opportunity for me to network and meet other artists and arts workers. My focus this weekend is the  role of Arts in health and the Arts and disengaged youth.

The fact that my gorgeous girl most probably has Aspergers has made me determined to pick the brains of every Artist working with children like Amy. I am going to be very busy this weekend.

As humans we like to judge. We apply our own experiences and moral compass to situations and make snap judgements.

Sometimes I read a post written by my daughter and it breaks my heart because the pain in her words is the only clue that I have to the pain in her heart.

Other times I will read a post written by Veronica and I know that it was written purely to get the words out of her head, to give a tiny glimpse into how difficult parts of her life are.

Amy is an exceedingly difficult and tempestuous child to parent. She stretches and challenges every single one of Veronica’s parenting skills every single moment of every day.

It is very nearly impossible to get Amy to do something that she doesn’t want to. It isn’t because she is naughty or because she has pulled the wool over her mothers eyes.It certainly isn’t because Veronica is lacking some vital parenting skill. It is because Amy is so focused on doing what she wants to do in that moment, that nothing else registers. Some of the parenting advice that Veronica receives makes me shake my head and roll my eyes with frustration.

I have impeccable parenting skills. My ability to get small and not so small children to behave is legendary. I am also very good with dogs and horses. But with my grand daughter Amy I am at a loss. So I don’t bother with traditional discipline at all. We skirt issues and avoid situations and I use distraction as my main tool.

We do the same things every single time Amy comes to visit. We check for eggs, then together we cook Amy an egg.  We paint a picture or two, play with some clay, watch a bit of telly together or read some books and then we go outside and throw the ball for the dog.

When Amy was still eating gluten we would do all these things at a frenetic pace and at the end of her visit the house would be trashed and I would be exhausted. Minus the gluten we are still very busy together and Amy isn’t quite so exhausting.

Veronica and I have been talking about Aspergers and Amy, we have been talking about how there is a very real possibility that Amy has Aspergers. Now that the A word is out in the open I can look at Amy’s behaviour with fresh eyes. Veronica and I are noticing more and more things that Amy does and more importantly we are noticing things that Amy doesn’t do.

So the next time you see a small child running amok in the supermarket or having a tantrum in the middle of a shopping centre don’t be so quick to judge, to shake your head, to glare at the obviously incompetent parent. And as for the whispered advice that all the child needs is a bit of discipline, a good smack will fix her.You can keep that under your hat as well.

It just goes ahead and does its own thing, skipping merrily along any number of tangential paths, spinning off in any direction it likes while the logical side of me gets very grumpy waiting for my brain to behave itself.

I can not explain to you properly how Amy’s sensory processing issues affect her because when Veronica explains Amy’s difficulties to me my brain misbehaves and wanders off into a ceramic daydream and I only process bits of the information. It is bloody annoying.

It was the same when Mum was dying. We needed to go to all the appointments as a threesome because both Mum and I relied on Veronica to remember all the information and then pass it back to us, sometimes Veronica had to repeat herself numerous times before it all sunk in. When Mum was in palliative care the doctor was showing us an X-ray of Mum’s shoulder and talking about the cancer in her bones and all I could see, was that the line of Mum’s rib cage would make a very nice shape on a large pot. *sigh*

As I understand it Amy sees her world very differently, it is like she is in a room with a hundred televisions all turned up as loud as they can go and all on different channels. The world screams its information at Amy and she cant handle it very well.

I don’t think that I would handle it very well either.