I've got the blues...

For the last couple of days I've had blue fingernails.

Which is not like me at all. Mainly because I don't have nice fingernails, but also because I'm not really the 'blue nails' type. (don't ask me what type the 'blue nails type' is, 'cause I dunno - do you really think this is the time to discuss that??

But I did do it for a reason. Someone out there had declared the 5th of July to be Autism Awareness Day. (Not that it actually was - the real Autism Awareness Day was on the 2nd of April). Actually, it was someone on Facebook who had declared that today would be a 'paint your nails blue for autism' day. And I always do what Facebook tells me...

Anyway...
These days, there wouldn't be too many of us that wouldn't know someone with autism. I'm not sure whether it's more widespread, or more easily diagnosed, but either way, autism is something that everyone needs to know about. I didn't really know much about it until it became a part of my life. But I'm glad it did.

Anthony's brother, Christopher (the second oldest after Anthony) has autism. He's the same age as me, so he hasn't grown up in the age of autism units and increased community awareness.
In fact, I think it's fair to say that his journey (and that of his family) has been a bit of a struggle.

When Christopher was first diagnosed with autism, his mother (my mother-in-law) was told to 'forget about him' - put him in an institution, because he was never going to be 'normal'.

Well of course she didn't (would you??), and that started a long line of doctors, carers, schools and community members who variously ignored it, wrote it off, and sometimes, helped.
But mostly it was her and the family, doing whatever they could. Because Anthony was the oldest, he did a lot of the helping (ever seen The Black Balloon? I haven't but apparently the scenes where Thomas chases Charlie - in his underwear - down the street are fairly typical of Anthony's pre-teen and teen years).

It has been hard, but it's fair to say that the doctors way back then were wrong. Because Christopher strikes me as pretty 'normal'. In that he lives on his own, has his driver's license and an arts degree. He's a talented artist that has had several exhibitions here in Canberra.


Sometimes he talks a lot, and he can get fixated on things, but he can be very fun to be around, and he's a very important part of our family life. My kids love him, and he loves them too. He was devastated when Sam died (we all were), and he spent many months creating this mural in Sam's honor:

It now hangs on our fence next to the other mural we put up last year.

Just like anything else that makes us 'just a little different' to whatever normal is, autism is something that deserves a little bit of understanding and a lot of 'awareness'. Hence the blue nails...

The Dragonfly

You may (or may not) have noticed a dragonfly on the mural. Today I'd like to tell you about it.

A few days after Sam's funeral, a good, old (not old as in elderly, but old as in I've known her since high school) friend called and told me she was going to drop something off for us. A little while later she drove up, put an envelope in my hand, and then drove off again.

In the envelope was a letter, and a lovely dragonfly ornament (which now hangs just below a framed photo of Samuel - the one we had on display at his funeral - in our lounge room) :
In the accompanying note, my friend told us about how at the funeral, she and our other friends watched a dragonfly fly into the chapel, perch on the curtains (near where Samuel's friends were standing) for a while, and then hover over our (Sam's family) heads. Apparantly it did so for a while, and then flew away.

I had never noticed the dragonfly, and neither had Anthony or Oliver, but my Dad had seen it near the curtains.

In some cultures, dragonflies are a very significant. They are different things to different people, but commonly they are said to represent renewal, positive forces, and change. The native Americans believe that dragonflies are the souls of the dead.

Now as I have said before, I'm not an enormously spiritual person, but for some reason this story touched me. Some of it was that my lovely friend had also been so touched by this that she went out of her way to find the dragonfly ornament, but some of it was also a hope that the dragonfly was (in some way) telling us that everything was OK.

Maybe it was just a coincidence (there are many water features in the grounds of the crematorium), but then again, maybe it was the spirit of Sam. I'm not prepared to discount that altogether, even though I don't know if I understand it.

Whatever the explanation, all of us were happy to take on the dragonfly as a symbol for Sam. Dragonflies are beautiful things, and it gave us something tangible to plant a memory in. Some would say we are silly, superstitious, maybe even hypocritical considering my feelings about religion and 'the soul', but it has been a nice symbol to use.

I felt so strongly about it, that I bought this brooch in Merimbula (please excuse the picture quality, I will take a better one later):
I never buy jewelery, in fact, I hardly even wear it, but I was drawn to this and Anthony convinced me to buy it. I think it's beautiful.

It's funny too, we never noticed (or saw) dragonflies in the past, except this one that landed on the door of our unit when we first went to Merimbula in 2004:
But now we see them everywhere. I know it's because of a consciousness thing (we're subconsciously looking for them?), but it still gives us a little thrill when we see one. When we went to Merimbula in January, one was flying along with us as we drove through Mimosa Rocks National Park; when we went blackberry picking recently there was one just sitting on a plant; and Anthony told me about the one that hovered around him while he was working in the back yard, then hovered over the playground (we have a big playground in out backyard that we bought when Oliver was born, so that Sam would have something to do if baby care got too boring for him), flew around the yard a bit and then flew off.

Each time this has happened we think of Sam, and a little bit of us believes that it's him keeping an eye on us. I kinda like that he is...

The Mural

During Samuel's funeral, we invited his friends (and anyone else) to come and write messages for him on the coffin (I know, I haven't written about that, I'm getting there...). It was a really nice moment and it got me thinking.

We didn't want to leave Samuel's ashes at the crematorium; it's a fair way away from our house and we wanted him close. We thought about the cemetary closest to us, but we didn't really have any connection with that. So we brought him home with us. The ashes currently live in his bedroom, wrapped in a The Living End t-shirt, and that's working OK for us right now. Who knows what we'll do in the future, but I figure we've got time to work it out.

But that did leave the problem of where would people go to pay their respects? That's one good thing about a grave or memorial site, you can go and visit talk (or just sit).

So we decided to create a mural. It's on the side fence, so people can do it without having to come and see us, and so far there's been no vandalism or anything.

The paint was donated by a friend of Anthony and I did all the spray work. The small panel on the right is what Ollie did that day. It says "Samuel I had so much fun from Oli". We put our own messages on (this is mine - I know, I spelled gorgeous wrong, DOH!):

We have had a lot of people (especially kids) coming and writing messages on the mural, which is really nice. On Sam's birthday, all his friends went out there and wrote birthday messages.
It might be a little unconventional, but it's working well for us. When we get our act together, we're going to put a little garden bed out there, and plant a couple of blueberry plants (Samuel loved blueberries).

We're very happy that people are using it.