Thursday, July 13, 2006
A is for Autism
Hello, my name is Neil.
I'm about to write a post that I've thought about for a long time.
One of the things that I decided to do when I started this blogging caper, was to use a nom de plume. It wasn't because I didn't want anyone to know who I am, rather there was an issue in my life whereby I preferred to be anonymous. However the more eagle eyed amongst you all ready know my name from email contacts I have made.
What is causing me to publicly reveal myself is twofold.
The first reason is that it seems to me that there are two kinds of food blogs. The serious ones that are all about the food, like Stephencooks or La Tartine Gourmet or the more personal ones like Orangette or Mattbites that give the story behind the food. As much as I would like to be serious, it's just beyond me, so my blog is more the personal account. Because its personal, I need to reveal things about myself to draw you into my world, so that some of the things that I write about make sense to you.
The second reason is that I'm the father of an autistic child.
One of the reasons I so enjoy blogging is that it gives me a voice. There are times in everyone's life when people need a voice, to give an outlet to inner feelings. When I started to blog I needed to talk about food, I could of just as easily started an autism blog, but that wasn't for me. It's not something that I could easily post about with the same frequency as I do with food, but there are times when I really want to say something about it.
Like now.
The other day I was over at Culiblog where I saw a post entitled Autistic Chocolate. Naturally I had a read of it; basically it was about a designer who was working with autistic people. There were also some quotes from autistic people, one in particular whom I could not agree with and said so in comments. So I thought that I would like to share with you a little of what its like to live with a person with autism.
First a poem.
I posted this not so long ago, many of you probably had no idea what I was on about. My mate pentacular, helped me to bang it into shape, so it's different to its first outing. It's a first hand account about what its like to discover that your child has a disability.
CRYSTALLINE
From earth's deep womb,
in oozing amniotic lava
a gem crystallized,
heat, with pressure of everyday life.
Apprentice jeweler sets to,
carefully grinding, polishing,
to reveal its faceted form.
She holds to the light, this wondrous prism,
and from its depths
a sweet diaphanous rainbow explodes,
cacophony of colours swirl and merge
in secret ways,
witness to the flaw within,
disturbed arrangement of tiny molecules.
No tissue stems her salty tide,
rainbow colours turn to blackest night,
bewildered,
wondering which cut next.
Mirror shine pierces her soul,
illuminates dark places
holding scattered cobwebs
where forgotten memories lie,
helplessly trapped.
Gazing at the sun leaves blindness
with crippling anguish,
unable to see,
the perfection lying in her hands.
The memory of that day is burned into me, the sombre faces that led us to a room full of boxes of tissues. My wife's uncontrolled tears as the diagnosis was revealed. The trance like state we worked in as we desperately tried to access services. A black dog came to live with us*. We had to learn as much as we could as quickly as we could about this condition, in order to understand our child.
Autism Spectrum Disorder to give it its full name has two major characteristics, one is major difficulties with social interactions, the other is problems with language. There are varying degrees of affectedness, ranging from near catatonia to individuals that can function independently. The world's richest man suffers from a form of autism.
As a parent you have to quickly learn to ignore others when your child does things that may not appear normal. This can lead to sticky or funny moments, depending on your view. One time we were in a country pub and a very young M decided that the cutlery on the surrounding tables needed rearranging. The publican told us in a stern voice that it meant a lot of extra work for him. I explained to him that she had autism and we would tidy up, he replied that he knew that, just make her stop. That was the last time I publicly said anything about her condition.
Even when we shopped at Prahran Market. Autistic kids quickly pick up rituals and M was no different. First was yoghurt breakfast, then off to the children's playground followed by a visit to the toilet, the girl's toilet of course. What would you do if you were a man and your three year old autistic daughter headed straight in to the ladies? You go straight in too. I wish to applaud all those women who never said a word about my intrusion, but what I can tell you is what a powerful symbol is that women on the door. The first time I almost couldn't follow her, but I did.
M is six now and doing pretty well. She has attended the early intervention program at Southern Autistic School since she was two and has made great progress from not being able to speak at all to someone that is considered to be a bit of a social butterfly. She now attends a mainstream school two days a week.
So what is the point of me telling you this?
Well recently there was a segment on A Current Affair about fish oil and how it could help with problem behaviours amongst a range of conditions, including a form of autism. My sister-in-law was straight on the phone to tell us and I checked out the story on the net. It was nothing other than an advetorial for a fish oil supplement, squarely aimed at people who are desperate to try anything to see if it helps. There was no claim that it in fact did help, only that it might help. Nice, huh?
I don't blame my sister-in-law for wanting to help, but the thing is that autism is a life long condition for which there is no cure. Every time someone tells us about a new *treatment* for it our hopes are raised a little bit, only to be dashed further down the track. We could have spent any amount of money on various treatments, up to $20,000 on a particular one, with no guarantee of success, but what we have discovered along the way is that early intervention was the absolute best thing that we could do for M. So if you want to tell someone about a new treatment for a permanent condition, maybe do a little research first.
But if you really want to help someone who's child has a disability, any disability, from where I'm standing the best thing to do is to invite them to your home, or visit at their home. Engage with them, read to them, talk to them, play with them, make them feel included. Don't be put off if your first attempts are rebuffed, it can take a long time to get to know them. Don't worry that you don't know how to handle them, their parents didn't know at the start either, you can learn.
Would you like to meet M? She's here.
*black dog is an Australian expression for depression.
I'm about to write a post that I've thought about for a long time.
One of the things that I decided to do when I started this blogging caper, was to use a nom de plume. It wasn't because I didn't want anyone to know who I am, rather there was an issue in my life whereby I preferred to be anonymous. However the more eagle eyed amongst you all ready know my name from email contacts I have made.
What is causing me to publicly reveal myself is twofold.
The first reason is that it seems to me that there are two kinds of food blogs. The serious ones that are all about the food, like Stephencooks or La Tartine Gourmet or the more personal ones like Orangette or Mattbites that give the story behind the food. As much as I would like to be serious, it's just beyond me, so my blog is more the personal account. Because its personal, I need to reveal things about myself to draw you into my world, so that some of the things that I write about make sense to you.
The second reason is that I'm the father of an autistic child.
One of the reasons I so enjoy blogging is that it gives me a voice. There are times in everyone's life when people need a voice, to give an outlet to inner feelings. When I started to blog I needed to talk about food, I could of just as easily started an autism blog, but that wasn't for me. It's not something that I could easily post about with the same frequency as I do with food, but there are times when I really want to say something about it.
Like now.
The other day I was over at Culiblog where I saw a post entitled Autistic Chocolate. Naturally I had a read of it; basically it was about a designer who was working with autistic people. There were also some quotes from autistic people, one in particular whom I could not agree with and said so in comments. So I thought that I would like to share with you a little of what its like to live with a person with autism.
First a poem.
I posted this not so long ago, many of you probably had no idea what I was on about. My mate pentacular, helped me to bang it into shape, so it's different to its first outing. It's a first hand account about what its like to discover that your child has a disability.
CRYSTALLINE
From earth's deep womb,
in oozing amniotic lava
a gem crystallized,
heat, with pressure of everyday life.
Apprentice jeweler sets to,
carefully grinding, polishing,
to reveal its faceted form.
She holds to the light, this wondrous prism,
and from its depths
a sweet diaphanous rainbow explodes,
cacophony of colours swirl and merge
in secret ways,
witness to the flaw within,
disturbed arrangement of tiny molecules.
No tissue stems her salty tide,
rainbow colours turn to blackest night,
bewildered,
wondering which cut next.
Mirror shine pierces her soul,
illuminates dark places
holding scattered cobwebs
where forgotten memories lie,
helplessly trapped.
Gazing at the sun leaves blindness
with crippling anguish,
unable to see,
the perfection lying in her hands.
The memory of that day is burned into me, the sombre faces that led us to a room full of boxes of tissues. My wife's uncontrolled tears as the diagnosis was revealed. The trance like state we worked in as we desperately tried to access services. A black dog came to live with us*. We had to learn as much as we could as quickly as we could about this condition, in order to understand our child.
Autism Spectrum Disorder to give it its full name has two major characteristics, one is major difficulties with social interactions, the other is problems with language. There are varying degrees of affectedness, ranging from near catatonia to individuals that can function independently. The world's richest man suffers from a form of autism.
As a parent you have to quickly learn to ignore others when your child does things that may not appear normal. This can lead to sticky or funny moments, depending on your view. One time we were in a country pub and a very young M decided that the cutlery on the surrounding tables needed rearranging. The publican told us in a stern voice that it meant a lot of extra work for him. I explained to him that she had autism and we would tidy up, he replied that he knew that, just make her stop. That was the last time I publicly said anything about her condition.
Even when we shopped at Prahran Market. Autistic kids quickly pick up rituals and M was no different. First was yoghurt breakfast, then off to the children's playground followed by a visit to the toilet, the girl's toilet of course. What would you do if you were a man and your three year old autistic daughter headed straight in to the ladies? You go straight in too. I wish to applaud all those women who never said a word about my intrusion, but what I can tell you is what a powerful symbol is that women on the door. The first time I almost couldn't follow her, but I did.
M is six now and doing pretty well. She has attended the early intervention program at Southern Autistic School since she was two and has made great progress from not being able to speak at all to someone that is considered to be a bit of a social butterfly. She now attends a mainstream school two days a week.
So what is the point of me telling you this?
Well recently there was a segment on A Current Affair about fish oil and how it could help with problem behaviours amongst a range of conditions, including a form of autism. My sister-in-law was straight on the phone to tell us and I checked out the story on the net. It was nothing other than an advetorial for a fish oil supplement, squarely aimed at people who are desperate to try anything to see if it helps. There was no claim that it in fact did help, only that it might help. Nice, huh?
I don't blame my sister-in-law for wanting to help, but the thing is that autism is a life long condition for which there is no cure. Every time someone tells us about a new *treatment* for it our hopes are raised a little bit, only to be dashed further down the track. We could have spent any amount of money on various treatments, up to $20,000 on a particular one, with no guarantee of success, but what we have discovered along the way is that early intervention was the absolute best thing that we could do for M. So if you want to tell someone about a new treatment for a permanent condition, maybe do a little research first.
But if you really want to help someone who's child has a disability, any disability, from where I'm standing the best thing to do is to invite them to your home, or visit at their home. Engage with them, read to them, talk to them, play with them, make them feel included. Don't be put off if your first attempts are rebuffed, it can take a long time to get to know them. Don't worry that you don't know how to handle them, their parents didn't know at the start either, you can learn.
Would you like to meet M? She's here.
*black dog is an Australian expression for depression.
17 Comments:
I am very moved by your post, Neil. M has a wonderful father and she is clearly a beautiful child.
All the best to you and good luck.
Hi sam, and thanks for your kind words.
BTW I'm writing a children's book to help explain autism from a child's perspective. Unfortunately I don't know any illustrators, if you or anyone reading this knows someone who may be interested, could you let me know.
What a beatiful young lady and what a kind and caring father she has. Thank you for this beautiful post.
Your daughter is lovely, and I'm glad she's doing so well at school. I better understand that poem ~ I saw that it was profoundly passionate. Now I know why.
I'm glad your food blog is a personal one. Thanks for letting us in on your world.
What a brave thing, to share so much of your world with us. I was very moved by the story of your experiences with your daughter, who really is lovely. I teach fourth grade (9-10 year olds) and I've had one student who was autistic. He also had early intervention, plus was lucky enough to have a mother who was completely dedicated to his progress. Nick was a very loving child, extremely gifted in math, and he had some amazing abilities to recall things. He had a very quirky sense of humor and would keep me smiling all day. He hated it when I changed the routine, but I learned to explain it to him in advance and that helped a lot. I learned a lot about autism from him and his parents. Now he's in high school but will still stop by sometimes after school to visit me.
Now, about WHB, no photos required!!
Hi Neil (though you'll always be "Tankedup" to me),
This post brought tears to my eyes(and Rob's too). It was so moving and I loved the poem.
M is beautiful, and it's safe to say that she is blessed with two great parents.
I think so many people misunderstand autism, and I can only imagine how frustrating that is for a parent, let alone for the child.
Thank you for sharing this part of yourself with us. I can't wait to read your book.
Hi nerissa, yes M is gorgeous and I'm proud to be her dad!
Hi gigi, thanks for your kind wishes. When I originaly posted the poem, I kind of thought no-one would get what I was on about. Sometimes you have to be brave.
Hi kalyn, obviously I know a lot of autistic kids, they are all fantastic people with wonderful personalities, sometimes you have to tease it out, sometimes it slaps you right in the face. A lot of people think of autistics as being rather cold, but when I stand at the schoolgate and see their little faces light up when they see their parents, well you wouldn't be anywhere else. And yes they all seem to have a well devolped sense of humour.
Hi angela, I wouldn't have it any other way.
There is no doubt a lot of frustrations to get through as well as a lot of other things as well. I heard one mother on getting the diagnosis say that it was like the death of her little man. All her dreams for what he might have been, just passed away, which is why I wrote the poem. People see the 'flaw' (autism) and forget to look at the 'perfection' (person) right there in front of them.
Beautiful post and she is so pretty! Good luck to you all.
I don't normally reply to entries in blogs, but I felt I had to for this one. Was very touched.
I have a friend who's an artist for a major publishing group and she said to try www.booksillustrated.com.au for illustrators.
Whilst I'm here, I'd like to add that I do enjoy reading your entries and like to think that we've passed each other at the Prahran Market! you never know...
Good luck with your book; I hope the website helps.
cat
I read this yesterday and thought i might come up with some fine words to say ... but i didn't, so here is the raw stuff. This blog entry touched me deeply ... so much so that i was speechless ...
If it's any help at all i totally agree with you about your attitude and approach. Sometimes empathy is not enough and people really do have to walk in another's moccasins before they can speak with any wisdom.
M is blessed, as are you, though it must shred all your hearts at times.
What you have done with the poem reflects what you do for each other, polish until the brilliance of before turns supernova. Which is what has happened here. Of course there are elements of "helplessly trapped" all round, but it is that perfect imperfection perhaps?
I am in even greater awe of this poem than ever. This is a masterpiece, as is your family. *hugs
Hi laurie, she is gorgeous, but I may be biased. Thanks for your wishes.
Hi anon, thanks for the info, will definitely follow it up. I bet we have passed each other at the market, now you know M come up and say hi.
Hi shell, you're right it is a double edged sword, sometimes we are hurt by a careless word or action, but the upside is M, she is a wonderful child.
Beautiful entry, even more beautiful daughter. I hope that my entry about the autistic chocolate project of Ann de Gersem, and in which I talked about the notion of neurotypicality was not offensive to you. My intention was to show her project and to speak about designing for diversity. The quotes are indeed by people in the Autism Rights movement. It was the first time that I came across this group and was intrigued.
Hi pentacular, thanks for all your support and help over the years, it's been important to us.
Hi debra, I was not offended one little bit, rather I was pleased to see someone talking about autism. You inspired me to write this post.
Thank-you.
Hi michelle, I think coming to terms with autism is the hardest part, seeing your child as a child, not more not less, is also difficult, which is what the poem was about. I took a look at Caden's site, he looks great! In one shot I swear I can see my own daughters eyes. You're welcome here any time.
The best parent is the one who sees and loves each one of his children for the uniquely beautiful individual they are. Obviously you are that parent.
And M is beautiful.
I knew you were special, now I understand part of that special. It's good to get to know you.
Bravo, Neil
As a mother of a beautiful child with autism, I share your courage and determination. I know exactly what you mean about wellwishers calling you up with the latest cure against autism. Or people being very baffled by your child quirky behaviour. We still get looks when we go to the park and my son rolls in the sand.
I do let people know about my kid having ASD, and I let them know that in spite his disability he is first and foremost a kid.
thanks for the beautiful entry.
Lea
Hi tanna, Thank you for the kind words.
hi lea, that is the whole point isn't it? Your child is a person first and foremost, they may have an issue in their life, but he/she is perfect in their own way. I want people to see the child, not the disability, but some find it difficult to see past it.
Thanks.
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