About Me
I'm a Melbourne boy, hailing from St Kilda with one ex, one current wife and four kids. Love the outdoors and making new discoveries. I cook a lot at home (cheers from wife) and do some preserving, mostly jams, pickles and fruit liqueurs. This is the diary of a cooking journey.

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Monday, April 30, 2007
The real reason is...
A mate of mine started dating a woman with a couple of kids. Everything was going great, they were talking on the phone all the time, texting each other, the L word was starting to get a workout, they seemed happy together. Until my friend asked if he could meet her kids, then everything went cold. He came to see me for some advice, partly because he needed someone to talk to and partly because I have a daughter with autism.

You see his new friend also has a child with autism.

Now I'm not saying this is the reason she went cold all of a sudden, after all meeting the children is a natural part of getting to know someone who has a family. It can be daunting, but if one of those kids has special needs, it can be terrifying for both. Many years ago I was in the same situation as my friend and I well recall the day when I met my girlfriend's son, who was visiting from the institution where he lived, as she was unable to cope with him at home. Her nervousness at introducing her son to me must have sent her stress levels off the scale for all sorts of reasons, number one being the possibility it could have been the end of the relationship.

I explained all this to my mate and counselled patience as this women may have been going through a few emotional hoops of her own. He was bewildered that something so good could abruptly end, but I wasn't really surprised; as parents of an autistic child, it's something we go through every day as we negotiate life - exactly who do we tell about our daughter and how much to say? Those that have followed this blog for a while know something of her, but it's only what I choose to show you, usually it is something nice or a bit funny, but there is also another side that I'd rather keep to myself, though astute readers would have glimpsed it.

It was easy for me to imagine what his new friend must be going through and was brought into sharp relief yesterday at a family day organized by the autistic school my daughter attends. We met at a central point in a large park and fanned out from there, following our kids, depending on their whims. A small group of us found ourselves over at the children's playground that was being rebuilt after recently being burnt down by someone who got their amusement by destroying someone elses, so much of it was fenced off.

Our daughter M was happily playing on a roundabout, when in talking to her we mentioned her name and a couple with three children who were standing nearby shyly introduced themselves as they knew of M. We weren't wearing anything to identify ourselves to each other as parents of autistic kids, something that will probably be rectified next time around. As we talked, I noticed a father closely following his son around, who was extremely restless and taking off in all directions, including the fenced off area and ignored his dad's pleas to come back. I thought to myself that he must be with our group. The son came over to where we standing and his dad stood next to me, so we started to talk. I didn't think he knew me and I wanted to let him know that we also had a child with autism, but how to do it in case I was wrong?

We talked about his son a little bit with me trying to find a key to open up the conversation when I grabbed the nettle and asked what school his son went to and could see that he was very reluctant to tell me, so I mentioned half of our school's name without mentioning the autistic part and the relief on his face was overwhelming and so we chatted for about half an hour. Can you imagine what it's like to be relieved that you can talk freely about your own child, or why you should be even feeling that relief in the first place?

That is one of the more difficult balancing acts of being a parent with an autistic child, we want to tell you all about it, but we also don't want to tell you a thing. We are very often scared how you will react, sometimes with good reason. Yet we know in our hearts that disseminating information about this condition and the effects it has is one of the best things we can do, as it leads to greater understanding all round. But what we don't want to do is tell you that our child, our flesh and blood, is behaving strangely or doing things that are considered inappropriate, especially age inappropriate. We want you to believe the best about our child because we are like all proud parents everywhere, that's what we do, it's innate.

Just so you know, my mate's new friend wrestled with her demons, whichever one's they were, and won.

This is also an entry to http://blobolobolob.blogspot.com/2007/04/blogging-against-disablism-day-will-be.html

Labels: ,

 
  posted at 1:57 pm
  8 comments



8 Comments:
At 6:38 pm, Anonymous Stephanie said...

Neil...amazing story. I wish for your sake, and your friend's sake, that people were more willing to embrace the human condition (for want of a better expression) in all its myriad forms. I think half the world must conceal things that they think people will judge them for ... criticise them for ... disdain them for... our world values that unreasonable, irrational concept of perfection just too much.
As you have, I conceal many things between the lines of some of my posts. It's a hard thing to do when the blog has become a form of confessional for me! A few glasses of wine one of these days and I'll share way too much!

 
At 10:50 pm, Blogger MyKitchenInHalfCups said...

It's difficult to write about the ordinary and make me hold by breath but you do.
You are so right, for most parents it is innate to want to share and be proud of their child.
What we share and what we hold back,
who we share it with and who we hold back from, presents risks but also opens us to the people we care about and who care for us. Glad to hear your mate's new friend won!

 
At 4:05 am, Blogger Lydia said...

Neil, thanks for sharing this lovely post, and for reminding us all about how important it is to go through life with compassion and humanity. We have met a couple recently with an adult autistic child, and they are educating us about autism by talking about their experience. Their son is now 40 years old, thriving in a small group home with compassionate caretakers and three other adults with autism. It has been a long road for the entire family, but the road is made easier by being able to talk openly about it.

 
At 9:22 am, Blogger gigi said...

I think you said it all in your next-to-last line. We all want to present those we cherish in the best possible light ~ we want you to see the beauty in them that we already know. So we don't share everything, at least not right away, knowing that to do so would leave them vulnerable to rejection, criticism or worse.

But compassionate people always seem to know how to open doors, as you were able to do with that father, and that makes it so much easier. It's a wonderful gift.

Good for your mate and his friend!

 
At 10:01 am, Blogger neil said...

Hi stephanie, I well remember the internal battle I had about including some autism issues in a food blog, it was made easier by the fact that I was already including my family, but in the end wanted to show that autism is a natural part of life. As much as I'm a sticky beak, I counsel against drinking before blogging...

Hi tanna, you are spot on about taking risks with what you share and I think for the most part it works out well. I was happy for them as well.

Hi lydia, you are right about it being a long road and it's also not very straight, you can't really see where it's leading. I would love to meet some older people with autism just to get a feel for how everything turns out. It's great that your friends son has independence, that is definitely our goal too.

Hi gigi, it's funny how we hide away bits of ourselves and very often no one really cares as deeply as we feel they might, I say throw open the curtains and let in the light...unless it's time for bed.

 
At 11:33 am, Blogger Never That Easy said...

Excellent post - it covers so much.

 
At 7:56 am, Blogger neil said...

Hi never that easy, thank you for that, you raised some good points as well.

 
At 3:20 am, Blogger Shell said...

a deeply moving post full of beautiful gentility, Neil ... courage and honesty reveal themselves in many ways, eh?

 

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