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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.


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.


Obama’s Special Olympics Gaffe


So, the news and blogesphere is buzzing about Obama’s bad joke on the Tonight Show.  First, I do think the issue is getting blown way out of proportion.   Part of the reason might be because this is the first stupid thing I’ve heard Obama say since his presidential campaign kicked off.   But, did it have to hit so close to home?  I would think a member of a minority would be extra sensitive to the issues of other minorities.  I would also think that just the words “Special Olympics” would be used with caution by a politician.

Being a disability advocate for my children, I feel I should post something about this comment by the President.  It was obvious that the President was poking fun at himself, but unfortunately by comparing himself to the Special Olympics, he unintentionally made fun of the special olympiads as well.  A very unfortunate blunder, but hopefully this can be a learning experience for Obama as well as the general public.

When I first saw the above clip, I posted a tweet, which went to my facebook wall (below is the message).  This tweet easily broke my comment record and still counting.

“Cynthia Bissell is wondering what the disability community thinks of Obama’s Special Olympics comment. I’m thinking, Oh well, he’s not perfect after all…”

Here are some of the comments from FaceBook Friends:

“I think it’s pretty shitty. Not cool.”

“I’m sure it wasn’t mean spirited, just ignorant. Growing up I used to use the term “retarded” all the time, never really thinking about it until I realized what a lot of people with children with special needs felt. I was being very poopy and it never occurred to me. :(“

“He’s going to have to do something REAL special for them now that’s for sure!!”

“I agree. He’s not perfect. He was making a joke about himself. He did not intend to hurt anyone. I think the media tends to blow things out of proportion too often.”

“I understand he called the head of the special olympics immediately after the show- it was a stupid remark by a man we think is perfect, who is human after all! The difference for me is he takes responsability and puts himself in real situations where real people can see the best and the ongoing struggle to be the best.”

“We all say things sometimes without having enough time to think. That only makes human.”

“that’s too bad he used that analogy … highly inaccurate assumption about special olympians and bowling! there are MUCH larger fish to fry tho so I guess we’ll forgive him.

“I was pretty upset to see 1) Obama say that and 2) Jay Leno laugh and 3) the audience laugh. It’s really a good glimpse at how far we have to go. What was so funny? I’ve seen and been involved with SO and the athletes are NOT funny and NOT bad bowlers either. I hope something good comes of this, I was really surprised to see Obama do that, really disappointed.”

“I also hope that some good comes out of it. It was shocking to me, I know it may not seem like a big deal to some but all I can say is WHAT WAS HE THINKING?????? Jeez. And I like Obama!”

“My thoughts are, maybe this will help shed some much needed media light on Special Olympics, and really, economy is going to hell in a hand basket (not sure who’s) so media should move on!!”

“…you know my involvement with Special Olympics … I’m VERY sensitive to that kinda of language misuse when it comes to special needs. One can only hope that some good will come out of this.”

Addendum 3/21/09, best reply yet from Michelle:

“Obama’s comment just underscores how pervasive discrimination against mentally disabled people is in our society; most people will still consider the “r word” socially acceptable when it’s really just as bad as the “n word”. But inviting Special Olympians to the White House for a bowling lesson, while it may be good PR, won’t do a thing to fix the problem. I’d like to see them hire a mentally disabled person to work in the White House. Not only would Obama be setting a good example for businesses, he’d make a real, concrete change in someone’s life.”


Witch Hunt in Gambia

Gambian President Yahya Jammeh, pictured in 2006, invited witch doctors to the West African nation.
Gambian President Yahya Jammeh, pictured in 2006, invited "witch doctors" to the West African nation.

(CNN) — Around 1,000 people accused of being witches in Gambia have been locked up in secret detention centers and forced to drink a dangerous hallucinogenic potion, according to human rights organization Amnesty International.

A bit of a time warp to the Salem witch trials of 1692.  Crazy stuff in 2009.  But I suppose it is not much of a stretch for people who can believe in gods, devils, angels, spirits and/or miracles.  Why not witches, spells and curses?  People can be so delusional, it’s scary.


Bailout Money Bonuses?!

AIG (American International Group, Inc.) is a major insurance corporation based at the American International Building in New York City. AIG made huge, bad bets on the housing market that have so far cost taxpayers $170 billion in bailout money. But this company gave it’s employees $450 million in bonuses! This is outrageous! Any company that is so bad off that it needs bailout money should not be allowed to give out bonus money to anyone! They helped to destroyed our economy, and now their executives are being rewarded with bonuses?! WTF!