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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!

Your Genes, Your Health book cover

Your Genes, Your Health–A Critical Family Guide That Could Save Your Life
By Aubrey Milunsky, M.D., D.S.c.

A rare, non-technical book about many genetic disorders often not recognized in families, containing valuable information and authoritative guidance for genetic testing.

So, What's the Difference workbook cover

So, What's the Difference?
A guide to helping children and young adults understand their learning differences
By Donna Cutler-Landsman

This self-help workbook is designed to assist students with disabilities in:
• Understanding causes of disabilities, including genetic causes
• Recognizing individual strengths and weaknesses
• Soliciting help from others (parents, teachers, friends, etc.)
• Understanding the role of special education
• Learning how to be successful
at school
• Studying for tests more effectively
• Getting and staying organized
• Coping with teasing and bullying
• Making and keeping friends
• Coping with sadness and frustration
• Recognizing the struggles of others
• Mapping out and working towards future goals

The workbooks are available in four themes:
butterflies, coral reef, racecar and jungle.

 

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

Interviewing Mom

By Dan Coulter

How well do you know your mom?

You might say, "Hey, she's my mom!" Yes, I'm sure you know a lot. But how much do you know that's not solely tied to what she does for you?

Maybe you've already bought your mom a gift or planned something special for Mother's Day. In addition to that, why not give her something really personal? An interview.

I have Asperger Syndrome. I know how easy it is to assume Mom knows how much you appreciate her. It took me a long time to understand how much it means for a mom to hear that out loud. It also can take time for a son or daughter to see Mom as a person who has more to her life than the family she loves. It's easy to take what moms freely give. It's not always easy to understand how to give back.

I found that when I want to understand something better, one of the best ways is to ask questions. A great way to understand a person better is to interview that person.

So, why not interview your mom? It will show her you're interested in her life, and give you insights that can help you show you care. If she asks "Why?" tell her the truth: you want to know more about her.

You can make up your own questions, but here are some you might want to include.

1. What's your favorite color?
2. What's your favorite song?
3. What's your favorite place?
4. If you had a day to yourself to do anything you want, what would you do? 5. What makes you happy?
6. What makes you sad?
7. What's your least favorite chore?
8. What was your favorite childhood toy?
9. What's a great memory from being a teenager?
10. What's a great memory as an adult?
11. What's your biggest worry?
12. What's something you've always wanted to do but haven't done yet? 13. What's something I could do that would make your life better?
14. What is your hope for me?
15. What's something I don't know about you that would surprise me?

When you ask your questions, listen carefully to the answers. It's fine to ask follow-up questions, but keep the focus on Mom. Even if you think you know the answer to a question, you may be surprised.

It's kind of ironic that so many little girls who were raised on princess stories of being rescued by a prince, turned into rescuers in their families. Girls became women who became moms who provide daily rescues with encouragement and band aids. With left-behind lunches and homework ferried to school. With long hours of research and never-ending efforts to help their children who have challenges.

Doing an interview can give you ideas on ways you can "reciprocate rescue" your mom. Even though she's an expert, Mom will appreciate being on the receiving end of a bit of rescuing.

Especially if it comes from you.

ABOUT THE AUTHOR: Dan Coulter is the author of the upcoming book, "Life in the Asperger Lane." You can find more articles on his website at:

www.coultervideo.com.

© Dan Coulter 2012 Used by Permission All Rights Reserved

Thought For The Day

Tulip

To be interested in the changing seasons is a happier state of mind than to be hopelessly in love with spring.
–George Santayana

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!

Heart Pin
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.
More Details Link