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Featured Links

The Coffee Klatch–Blog Talk Radio

Sherry Gomez and Tammy Rose, founder of FACE 22 (Families Advocating for Chromosomal Education), join Marianne Russo to discuss 22q11.2 Deletion Syndrome.

The Coffee Klatch is a virtual cup of coffee for parents of special needs children. We bring you award winning authors, expert psychiatrists, psychologists, physicians, advocates and internationally renowned children's foundations to help you raise your special needs child. You are your child's best advocate - if not you then who - become an informed educated parent.

Sibling Support.org
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.

National Disability Rights Network
The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities. Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.

Study on Microduplication
22q11.2 Syndrome

Chromosome 22 Central
keeps community members informed of studies in need of volunteer participants. For more information, please visit:
http://www.c22c.org/research.htm

New Books!

Front cover "Yearning for Normal"

Yearning for Normal
By Susan Ellison Busch

This heartbreaking journey will take Susan Busch and her son, Mike, through hospitals, backyards, schoolrooms, psychiatric wards, a court room, a burn unit, and the corridors of Susan's own heart. But beyond the struggles of adjusting to life with this deletion, there is a tale of humanity, with all its sorrow, love, and hope. This story is not just for the parents of children with 22q.11 Deletion syndrome, but for their friends, neighbors, doctors, nurses, teachers, speech therapists, social workers, police officers, paramedics, firefighters, ministers, and whoever else likes a good story.

328 pages - $17.99 (paperback)

 

Articles

Healthy Corner
How to Worry More Constructively

Smoothies for Kids

 

Useful Tools
Angel Teachers

 

Fun Stuff
Games, Art and Jokes.

Featured article:
Clay Pot Snowmen

 

Home Economics
Cooking With Kids

Featured article:
Basic Skills–Shredding cheese

 

Inspiration
Video–Brene Brown on Vulnerability

22q Kids

Welcome to 22q Central!

22q Central is a 501(c)(3) non-profit organization with the goal of promoting awareness and education regarding a common, yet many times overlooked, genetic disorder known as 22q11.2 Deletion Disorder, DiGeorge Syndrome, VCFS (velo-cardio-facial syndrome) and others. Parents, caregivers, and extended family of those with VCFS face difficult challenges that require practical solutions, and that is exactly what you'll find here. As a worldwide community resource center, we hope that you'll join the many voices of experience that speak here, and that you'll share in reaching out to others with your own unique perspective. We offer you a welcoming, safe and comfortable place to interact with other parents and professionals, and an opportunity to learn, share and get involved. We want to become "A friend of your family."

Sherry Baker-Gomez, founder of 22q Central and author of
"Missing Genetic Pieces–Strategies For Living With VCFS"

 

Topic of the month

Good Eggs and Bad Apples
and Asperger Syndrome

By Dan Coulter

I heard these expressions growing up:

"He's a good egg."

"One bad apple can spoil the barrel."

I thought of them both the other day as I rode my bike next to the curb down a wide, empty street. A car zoomed up from behind and, just as it passed close to me, a passenger shouted "HEY!" out the window, apparently trying to rattle me into running off the road and crashing.

Luckily, I kept my balance as I watched the car disappear down the road. I only thought later that I should have tried to see and remember the car's license plate. I was more disgusted than angry.

But the more I thought about this incident, the more I realized how rare this was. How many thousands of drivers have routinely passed me on my bike rides? How many have automatically moved toward the center of the road to give me more space?

This one bad apple made me appreciate the many good eggs all the more.

When you have difficulty understanding social interactions, it's easy to take the nice folks for granted and get hung up on people who hassle you or don't treat you with respect. Having Asperger Syndrome can make you obsess over bad experiences, so you may have to take active steps to keep your mental balance.

Expecting the worst from people can become a self-fulfilling prophecy.

But a self-fulfilling prophecy also can work to your advantage. If you look for the best in people, you're more likely to find it. Some people are naturally nice, even when people who have Asperger Syndrome demonstrate some naïve or difficult behaviors without meaning to.

I remember being at a banquet when I was a freshman in high school. I was struggling unsuccessfully to eat the main dish I'd ordered with a knife and fork. A senior girl from another school sitting nearby saw my plight and gently and quietly said to me, "Some foods are meant to be eaten with the fingers."

It was simple act of kindness that I remember vividly, even when I've long forgotten the reason for the banquet or exactly what I had on my plate that would have been okay to eat with your fingers. It was probably fried chicken. But the kindness is something I'll never forget.

If you have Asperger Syndrome, you can tilt the odds of being treated well in your favor by working on any social skills that you don't pick up intuitively. Books and videos can help, but one of the most effective ways to learn social skills is to take a class and/or to practice with someone.

Depending on the circumstances, it can also help to let others know the reason you have difficultly acting as they expect. In making educational videos, my wife and I have found that many classmates and co-workers are much more understanding and helpful after they discover Asperger Syndrome is behind behaviors they thought were egotistical or intentionally rude. And many are more than willing to meet you halfway if they see you're working on modifying those challenging Asperger behaviors.

Of course, there will always be some people who don't treat others with respect or who prey on others who are vulnerable. You can look at them as prisoners of their own mindset. Maybe they feel they've been wronged and react by taking it out on others. But that's their problem, not yours. You have the choice not to let a bad apple spoil your outlook. Being polite, even to people who aren't polite to you, is always in your best interest.

If you focus on the good people you meet and the good things that happen, it's easier to put bad apple experiences out of your mind. And you can be that nice guy or gal who makes others feel more comfortable. If others see you as a good person, they're more likely to come to your aid and serve as a buffer between you and the bad apples of the world. But also, being considerate is just the right thing to do, and the the best way to use a knowledge of social skills. In 1929, Vogue Magazine published a book of etiquette that summed it up nicely: "The best manners in the world come from kindheartedness and a sense of justice."

I hope you have many of your own "finger food" moments, whether you're on the giving or receiving end of that kindness. You might want to keep in mind an old saying I just made up, "One good egg -- deserves a dozen."

ABOUT THE AUTHOR -- Dan Coulter is the author of the DVDs "Manners for the Real World: Basic Social Skills" and "Asperger Syndrome at Work: Success Strategies for Employees and Employers." You can find more articles and information on his website: coultervideo.com.

Copyright 2013 Dan Coulter Used by Permission All Rights Reserved≠

If you'd like to comment on this article, link to it, or like it on Facebook, you can find it at: http://coultervideo.com/content/good-eggs-and-bad-apples-and-asperger-syndrome

Thought For The Day

Kids and Grownups linked hands in sunset

"If a child is to keep his inborn sense of wonder, he needs the companionship of at least one adult who can share it, rediscovering with him the joy, excitement, and mystery of the world we live in."
–Rachel Carson

read more inspiration
Call for Writers Contact Us Link To Events Page Contact Us
22q Events Announcements Contact Us Link To Events Page Contact Us
Sherry and Tishri are taking reservations for speaking engagements on 22q related topics such as:
  • Infancy
  • School Years
  • Transition To Adulthood
  • Sibling Relationships

Please contact us for available dates and times!

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Promote 22q11 awareness and show your support of our educational campaign with a beautiful, two–tone metallic lapel pin, set with a colored stone of your choice.
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