Rules here at the boss's house.
Link, follow here, tell me I'm great, yada, yada...
A rehash of an old, old piece. Many of you would have read the lovely
if you haven't, well Google is your friend. And I have edited to include a link in the author's name. It was written in reference to Down Syndrome, but many choose to bastardise the idea and apply it to Autism Spectrum Disorder.
WRONG!
Ask any mother or father if raising there child has any similarities to this piece, and I'm pretty sure you would receive a resounding NO! And so, in keeping with my twisted appreciation of such stuff... I rewrote it. A little. You may find this piece on other sites, I wrote it around two years ago after yet another friend vented her anger at the original being used again in reference to autism. So on Flog Ya Blog Friday I give to all of you:
Welcome to Somalia
I am often asked to describe the experience of raising a child with Autism, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, "Welcome to Somalia."
"What the...?" , you say, "What do you mean Somalia? I signed up for Italy, I paid for Italy, by God I am going to sit here and yell at you stupid people until someone explains how the hell a plane with a qualified pilot can screw up and end up in a war-torn African country instead of nice, relaxing, non-conflict Italy! I'm sorry, but you are wrong - this must be Italy. It has to be Italy. I will not accept Somalia when I organised and paid in advance for Italy."
But there's been a change in the flight plan. Terrorists have taken over the plane. Now you are in Somalia and if you escape with your life you'll be lucky, but even then your sanity will be severely damaged.
It's a scary, truly unpleasant and very different place. It's far more exhausting than Italy, more life-threatening than Italy. But after you've been there for a while and have managed to escape from the plane and are fighting for your survival you stop to breath, you look around... and are scared witless by the violence, degredation and lack of human rights. You learn to fight for things you always took for granted: education, support, understanding.
Meanwhile, everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. They look at you, thin, drained, emotionally and physically exhausted, covered in bruises and scratches, and living in fear of everyday life.
For the rest of your life, you will say "Yes, Italy,that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... as you spend your life mourning the fact that you didn't get to Italy, you will never fully relate to others the trauma and emotional scarring, despondancy, desperation, solitude and terrifying lonliness of Somalia.
This is what it is like bringing up a child with Autism Spectrum Disorder.
So next time you see a child having a meltdown in a shopping centre, or your kid is lashed out at by a SN child in their class, or you witness a mother is sitting on a bench crying as she struggles to restrain her raging 8 year old who is kicking, biting and screaming "I f**king hate you ", you can say to them:
SHIT - is that what Somalia is like? I had no idea.
God knows where this Holland is, as I sure as hell don't!
Life with autism - not a bloody holiday!
One important thing is that whilst they've taken you to a horrible, disgusting, filthy place, full of war, violence, pestilence, famine and disease you'll probably survive. It's just a different place. A very screwed around, hard, emotionally gut-wrenching different place.
So you must now try and outwit these terrorists. Fight for your life and the lives of those you love. You will meet a whole new group of people you would never have met, and most of them you would never have wanted or wished to meet.It's a scary, truly unpleasant and very different place. It's far more exhausting than Italy, more life-threatening than Italy. But after you've been there for a while and have managed to escape from the plane and are fighting for your survival you stop to breath, you look around... and are scared witless by the violence, degredation and lack of human rights. You learn to fight for things you always took for granted: education, support, understanding.
Meanwhile, everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. They look at you, thin, drained, emotionally and physically exhausted, covered in bruises and scratches, and living in fear of everyday life.
For the rest of your life, you will say "Yes, Italy,that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... as you spend your life mourning the fact that you didn't get to Italy, you will never fully relate to others the trauma and emotional scarring, despondancy, desperation, solitude and terrifying lonliness of Somalia.
This is what it is like bringing up a child with Autism Spectrum Disorder.
So next time you see a child having a meltdown in a shopping centre, or your kid is lashed out at by a SN child in their class, or you witness a mother is sitting on a bench crying as she struggles to restrain her raging 8 year old who is kicking, biting and screaming "I f**king hate you ", you can say to them:
SHIT - is that what Somalia is like? I had no idea.
God knows where this Holland is, as I sure as hell don't!
Life with autism - not a bloody holiday!
16 comments:
Just got here from Mummy Time's blog. I hadn't heard of the welcome to Holland post but I will google it.
Your post is strong and striking. I hope that lots of people read it and can start to understand.
Well done you, you are a strong, eloquent woman.
I will be following.
I know a few kids, and therefore a few parents, of varying shades on the autism spectrum and I've always wondered how they cope. Their faces are always so strong. But reading your blog has helped me look under that facade and for that I thank you. Hugs x
I cannot stand those twits that stand around during a meltdown and pass comments on "oh, look at that spoilt brat, needs a good belting, parents are too lazy to discipline these days" Grrrrrrrrr.
Maybe we could sell 'em our plane tickets and ship 'em off to Somalia?
You should remove me this week please. I haven't read the rules and don't know what I am doing. Sorry, will play next week!
lol.
Very powerfully written.
Our experience has been similar, yet quite different; we thought we were somewhere, just outside of Italy, Austria or Hungary, we knew we hadn't made it quite all the way to Italy. When all of a sudden, several years later, the curtain went up and the backdrops were put away, and it was revealed that we were actually in Africa, not in Somolia, but in the middle of nowhere, left to fend for ourselves.
Ooh, teared up a bit at that one.
If I do see another mummy doing the ASD dance I tell them "I got that model too".
Off to Google Holland. Beautifully written MM.
Beautifully written MM and oh so true. Between my three I often wonder if we will ever get to Italy. My son maybe the only one with a Somalia ticket that we know of but my daughter could front any rebel force on most days. Am I going to be forever exhausted I wonder? Thankyou for writing/ sharing this xoJen
This is a very powerful post. I haven't experienced any of this but this post gives me an insight to see and understand.
Just dropping in from FYBF.
I read this post with a real sense of understanding coming over me: I was raised next door to a boy who was (is) severely autistic. I saw up-close how his parents and siblings struggled to cope. I saw his mother get thinner and more tired-looking year after year. I know that they continue to struggle and they will struggle forever. They live in Somalia, and even though none of them signed up for it, that's where they are. The end.
So, I saw it all, I talked to the older sister about it, my Mom is best friends with the other Mom. But I don't deal with it, and I have no real idea what it must mean to do so. Your post gave me a glimmer.
Well done. Well written.
I can feel you in this post. I believe you should take a trip to Italy to unwind and relax. But make sure you see the sign that the plane is really, really going there. Hugs!
Oh MM. You are a one strong woman. I take my hat off to you.
Such a powerful post. Thank you for sharing that.X
Hi MM,
Great post as usual. I have tagged you in a meme. It is here: http://whiningattheworld.blogspot.com/2010/04/first-post-another-meme.html
That was a real lesson for me. Very moving and enlightening. Thank you.
Positively and hauntingly brilliant.
i didn't know the original but have come here via Lulu's version in an Unperfect Life. I told her I get it and I also get yours. I have found that reading blogs of mothers with kids that have Autism or Asperger's make this so much talked about condition much clearer for the avarage mom.
(this said, I am not 100%certain how average me and my son really are, which is why I am taking so much interest in reading these blogs i think.. ) i hope your flight plan is doing alright these days. i'll follow your blog :)
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