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Monthly Archives: March 2009

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – 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 guidebooks and make 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 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 guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would 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 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 go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

 

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©1987 BY EMILY PERL KINGSLEY.
ALL RIGHTS RESERVED.

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Welcome to Beirut

Those of us who have children with special needs inevitably receive a copy of “Welcome to Holland” early on in our journey from some well-meaning person. I’m sure the vast majority of friends and family who read this blog know it well, so I’m not going to post it here, but here is a link if you haven’t read the Holland this piece:

“Welcome to Holland” by Emily Pearl Kingsley

When I first read Welcome to Holland – when the twins were babies – I did find it helpful. But now that I’m a slightly jaded veteran, I prefer the lesser known, somewhat sarcastic version called “Welcome to Beirut”. Welcome to Beirut is a response to Welcome to Holland written by Susan Rzucidlo who’s son has Autism. I think the Beirut version is a more realistic description of what it is like to have a child with a disability.

“Welcome to Beirut”
by Susan F. Rzucidlo

“I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It’s like this..”

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he’s like your in-laws, and you did marry into the family. It can’t be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don’t know where you are. What’s going to happen to you? Will you live through this? This is the day you get the diagnosis. “YOUR CHILD HAS AUTISM”!

There you are in Beirut, dropped in the middle of a war. You don’t know the language and you don’t know what is going on. Bombs are dropping “Life long diagnosis” and “Neurologically impaired”. Bullets whiz by “refrigerator mother” ” A good smack is all HE needs to straighten up”. Your adrenaline races as the clock ticks away your child’s chances for “recovery”. You sure as heck didn’t sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You’ve done everything right in your life, well you tried, well, you weren’t caught too often. Hey! you’ve never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She’ll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out (early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new “miracle” drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You’re excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You’re insurance company refuses to provide therapies for “chronic, life long conditions” and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child’s life with the stroke of a pen. You’re exhausted because your child doesn’t sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they’ll understand, they are living through similar times. For those people you will be forever grateful. Don’t get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren’t flying and bombs aren’t dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life is never normal again, but hey, what fun is normal.

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Attic Project

Now that the warmer weather is coming, I’m putting more flooring up in the attic. Here is a crude diagram of what the attic looks like. This is a side view of how the roof support beams are positioned and where I’m putting the flooring. It’s tough to get this layout in a photo. I’m putting a floor in the two larger spaces. The right side where the attic opening is I did last fall. I’m working on the right side now.

I’m using this space for storage now, but thinking about possibly putting a room up there at some point.

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Atheists are the most despised minority in America

A 2006 University of Minnesota study revealed that atheists are the most despised minority in America. But this is not news to atheists, it’s just the most recent in a long series of surveys showing that Americans are very bigoted and prejudiced against atheists. For as long as organizations have been asking Americans about atheists, Americans have been responding that they wouldn’t treat atheists as equals to theists and Christians.

Sample question from this most recent survey:
This group does not at all agree with my vision of American society…

Atheist: 39.6%
Muslims: 26.3%
Homosexuals: 22.6%
Hispanics: 20%
Conservative Christians: 13.5%
Recent Immigrants: 12.5%
Jews: 7.6%

There is a lot of anti-atheist bigotry in the US and around the world, in spite of the fact that atheists are among the most moral people. Statistics consistently show that atheists (on average) are smarter and display more tolerance toward others than theists. They are also more likely to stay married and are less likely to end up in jail or commit crimes.

Divorce rates by religion (1999):

Jews: 30%
Born-again Christians: 27%
Other Christians: 24%
Atheists, Agnostics: 21%

The Federal Bureau of Prisons keeps statistics on religious affiliations of inmates (1997):

Catholic: 39.164%
Protestant: 35.008%
Rasta: 1.987%
Jewish: 1.773%
Church of Christ: 1.744%
Pentecostal: 1.463%
Jehovah Witness: 0.890%
Adventist: 0.831%
Orthodox: 0.502%
Mormon: 0.399%
Atheist: 0.209%

Atheists consist of about 10-15% of the US population but are only 0.21% of the prison populations. So, the vast majority of atheists are morally sound without the need of a supernatural watchdog. It is important for atheists to stand up and be recognized in order to break the negative and wrong stereotypes of atheism.

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