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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Friday, November 10, 2006
In A Bad Place
A friend of ours told us the other day that the parents of a child in the same autistic school as our daughter M attends were separating. The child was in the same small class of five students as her son and is essentially a preps class for five year olds. It is the second separation in that class this year and got me to thinking about how hard it can be to live with autism.

We think of ourselves as lucky with M for she can function reasonably well for the most part and in autism lingo is considered high functioning. Other kids haven't fared so well and are thought of as low functioning with significant speech problems and particular problems with processing verbal information leaving them seemingly unable to comprehend even the simplest of instructions.

These kids can be a lot of work and terribly frustrating to deal with. In any marriage where a crack appears, autism can quickly become a wedge that drives into that crack creating a chasm. Now I know that separation and divorce is a modern reality, but I've always thought it unfair that one partner, usually the man, can just walk away from a difficult situation leaving only one to cope in a situation that it is hard enough for two people to deal with. But as hard as separation is on everyone concerned, there is something worse. I've just heard that the wife of one of my fellow school councilors has been very sick with breast cancer.

K was the first parent I ever spoke to at the school when she approached me after I had had a difficult time trying to get M to wear a jumper one cold morning. Some people with autism don't like the feel of certain types of material against their skin and will refuse to wear a garment made from it. As I struggled to get M to wear her jumper, a teacher made a comment to me about how cold it was, at which point K came over and quietly explained that not everyone understood autism and its practicalities. She then invited us over for an afternoon tea and a chat, which was one of the most illuminating discussions my wife and I had ever had.

Her husband P as well as being on the school council also has a position with Autism Victoria. He is hardworking and has a wonderful sense of humour, but at this moment I am fearful for the both of them. The worst thing for me though is neither K or P has told me about it and as much as I want to reach out to them, I feel I can't say anything yet. I am crying as I type this, fearful of the consequences for their family, but powerless to do anything.

I wonder how much autism has contributed to K's cancer, perhaps through depressing her immune system because of the strains of looking after her son. I know that autism visited depression on our family and no-one can say what the long term cost to our health will be. I know gentle reader that this is probably distressing to read, but I hope you don't mind me sharing with you, for I need to let my vicarious pain out. It's not that I'm railing against the journey we've embarked upon, it's just that the journey can get a little difficult at times.
  posted at 11:11 am

At 1:28 pm, Blogger Maddy said...

You are not ranting, but sharing. People are listening.
Best wishes

At 4:04 pm, Anonymous Anonymous said...

Gad, there has never been anything messier or more beautiful than people who care! A journey without any difficult time, is that really a journey?
I think you simply don't realize your power. Without any "knowledge" some form of a hug or a smile maybe all that is needed and is always extremely powerful. You'll have to discover the form it takes.
I think you are very powerful Neil.

At 8:37 pm, Blogger ilingc said...

It's so sad when you want to reach out to someone but don't know how to do it without hurting them. I share your pain there.

I think what you're doing with this blog is great, your writings and insights as a parent has certainly enlightened me and has made me more aware about autism.

Don't stop sharing Neil, I certainly don't mind and I'm sure a lot of your readers would agree too.

At 1:07 am, Anonymous Anonymous said...

These are heavy things that are weighing on your mind, Neil - and important things as well. I've never seen documented statistics about the divorce rate for parents with a child with special needs, though I've heard people say that it is significantly higher than average. I can see how it happens. I imagine that people find themselves with frustration or anger or fear or exhaustion and they don't know what to do with it. They don't want to focus it on their child, so they focus it on their partner. That's why I think it's SO important for us all to build up strong support networks - in "real life" and in the "blogosphere".

It's hard to imagine having to deal with cancer as well. It's great that you want to reach out and offer support, and I think you should do it. Even if you don't officially "know" what's going on, I think that a well placed phone call from out of the blue from a person saying "How are you?" can make all the difference in the world.

At 3:59 am, Blogger Sabrina said...

I think it is wonderful that you are able to express yourself here. I agree with mom-nos. I think that if I were in C & S's position it would help to know that others care. My husband has TWO autistic siblings. We spent time with them last night. They are older (31 & 50) and they always help bring me back to humility. We love them and realize just how special that they are.
Keep up the good work Neil. I am new to your blog, I am glad that I found you.

At 2:24 pm, Blogger neil said...

Hi mcewen, thanks for your support. It is hard not being able to say something directly to the one you really want to.

Hi tanna, knowing the right thing to do is what makes this so difficult.

Hi ilingc, thanks for the positive thinking. I always wanted to share our story with others to make them more aware, glad to see it's working.

Hi mom-nos, I haven't seen the rates for separation and divorce, but it intuitively seems higher. I have seen figures that show parents with autistic children have a depression rate four times higher than average. You are spot on about support networks, they are vitally important. We must have been thinking along the same lines as I called last night, but nothing was revealed.

Hi sabrina, hope you like food with along with the autism! We know people with two autistic children and I can't imagine how hard it must be. I'm glad you get on well with your husbands children - is it right to say children at those ages?

At 7:39 pm, Anonymous Anonymous said...

Sometimes the most difficult thing about it is just the agonizing over it. The right thing is usually pretty simple when it happens. I like the out of the blue "how are you?". An opening maybe all that's needed. And the other possibility may be that they may need someone not to know - there is strength and health in that normalacy. Don't create agony for yourself.

At 2:26 pm, Blogger Amy Peas said...

You write about two of the things that are always a significant part of my life and I enjoy reading your blog.

With two siblings who are both moderately mentally handicapped, this is one of the things that I fear the most for my parents. Your way of writing so eloquently about these issues is touching to read - thank you for the insight of another person's life.

And the recipes that would be a mission to recreate in Japan occasionally make me jealous! But then I remember that I have amazing sushi...

At 11:18 pm, Anonymous Anonymous said...

Part of the reason that I enjoy reading your blog is that you tell your stories of cooking and life with such gentle honesty. I can't imagine what it would be like to be in your shoes so I feel awkward saying anything except that I have both yourself and your friends in my thoughts.

At 11:40 am, Blogger Kalyn Denny said...

As always, you write beautifully even when telling about the pain you're dealing with. It's hard to know why we sometimes are dealt the hands we get. My thoughts are with you as you work out how to best support your friends and deal with your own feelings.

At 9:46 am, Blogger neil said...

Hi tanna, I understand that they may not want everyone to know and I'm fine with that, it's just that they're friends facing something really frightening and it's sort of like when you come face to face with your own mortality at a funeral.

Hi amy, I can see you understand where I'm coming from, thanks for your kind words. I'm jealous that you are in the spiritual home of sushi!

Hi ellie, sometimes it can be so hard to find the right words, then I guess it's a matter of finding some other way. Thanks for thinking of all of us.

Hi kalyn, you can't do anything with the hand you're dealt except try to improve upon it. Thank-you for your thoughts.


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