The rules

There has got to be common ground. I have started this blog to give people a place to tell their stories...positive stories . Too often we are mired down in the hows and whys, causes and cures. It is easy to forget that we are talking about people. One of the misconceptions that I have run into is that because I have children with disabilities-I am not allowed to have joy-nor are my children allowed to be joyful. Some of the comments I have received after relaying a funny story or anecdote...well you would think I had been kicking kittens.
So here are the rules. Anyone can submit a story,OR just a couple of sentences,OR a list of five great things either about their children or themselves. It must be positive, There will be no discusion of causes, cures, treatments, etc. There are more than enough places for that. Mean people will be deleted. If you are interested in taking part in this adventure please submit your story to please no pictures or video-lets keep it simple.

Monday, February 27, 2012

A post from Lexi of "Mostly True Stuff"

This is a post from Lexi who blogs at "Mostly True Stuff"

Welcome to Walmart.

Okay, so when your child gets diagnosed with a disability, they give you some antidepressants and a copy of Emily Perl Kingsley's "Welcome to Holland." She's a mother of a child with Down syndrome who, by all accounts, is the shiznit. I'd go into detail, but then you'd compare me to her, and I'd hate for someone as well known for being awesome to be taken down a notch or two because of my own awesomeness. You understand.

Anyways. This little metaphor is PERFECT for when your child gets diagnosed with Down syndrome. PERFECT. It's short, so I'm going to paste it here:

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 Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, 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... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Okay, so cute right? But it doesn't quite work for children with autism. So I rewrote it (aaaand you're welcome):
Having a baby is going to Costco on a Tuesday morning with your executive membership. It's quiet and the isles are wide and clean. People smile at you and some even give you high fives. There's treats on the end of the isles for you to try. The cashiers talk to you and call you by name. If you're lucky, Pete on isle 5 will say your name in his breathy sultry voice (I have no idea what that part has to do with parenting, but I liked it). Now, getting through Costco isn't always easy. Sometimes you get stuck behind a silver-headed centenarian who still uses a check but doesn't have an ID because they took her drivers license long ago. If it's your first time to Costco, it could be overwhelming. There's a LOT of stuff in there. You get confused. You get lost. You ask people around you and they are happy to help you on your way. Because they've been there before. Costco is even more challenging when you have other kids to take with you. But you'll make it through- because it's worth it in the end.

So you think you're headed to Costco. Everything seems normal. You take the same roads. But when you get there BAM! It's a freaking Walmart. You don't want to go to Walmart. You've heard about it. More and more people around you have been having to go to Walmart. You don't want to be a part of that club. You have an executive membership to Costco, dammit! But in you go. The isles aren't wide enough for you to get around the meth head who's hotwired the motorized cart. It's loud. It's frustrating. People don't look you in the eyes. There are no treats on the end of the isles and no one gives you high fives. They mostly just keep away. Your anxiety seems to peak and you head to the nearest dark corner in the store hoping to lie down in the fetal position and rock a little. But you can't. Because the floor is always dirty. You can't take a break at Walmart. You've just got to endure.

You find your way around and realize it's not ALL bad. It has lots of perks. Inside, you meet other Mom's like you. Who found themselves stuck at Walmart. They are some of the greatest people you've ever met. Occasionally, a stranger will walk by and smile, and it means more BECAUSE you are at Walmart.

Your friends will call you from Costco and tell you all about how wonderful it is. You'll be sad that you can't be there with them, too. But you've realized that in many ways, Walmart is better than Costco, you just have to REALLY look hard to see. There's much more variety. There's more depth. You can buy 100 goldfish, everything you need to make pretty jewelry and milk in one place! You didn't know there could be so much good stuff in one store.

But Walmart still sucks a lot of the time. It'll always be loud. It'll always be claustrophobic. But in the end, you'll find that your a much stronger person from having to go to Walmart than if you had to go to Costco.
And now that you're there, you'll take some time to walk to the furthest back corner and find the mother who is looking for a place to lie down and rock back and forth. Help her.