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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.

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
Vanquishing Victimhood

 

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

Motivating Children with Autism Spectrum Disorders

By Dan Coulter

How do you motivate a child with Asperger Syndrome or autism?


One of the most successful ways parents and teachers have found is using children's interests as incentives. Psychologist Jed Baker suggests, for example, giving a child who loves astronomy math questions about the distances between planets to motivate him in class. Using some ingenuity, you can come up with ways to incorporate a child's interests into less straightforward situations.


In researching a video about employment, I found one of the keys to workplace success for people with Asperger Syndrome was finding a job where they could use a special interest or skill.


But what about children with seemingly unproductive motivations?


Some parents tell me, "My son is only interested in video games and that's what he's good at."


That's understandable. If your son or daughter finds social interactions unpredictable and difficult, the structure of a video game may be a refuge. Gamers can succeed and get rewards. And, in a sense, they can feel like part of a group because they know other children play the same games.


Few children who play video games, however, will have the aptitude or opportunity to design games or find other ways to parlay their gaming skills into a job. From that perspective, things can look bleak.


But what if you say, "My child is only interested in video games, so far." What could you do to spark his or her interest in other things? If the power of your words hasn't worked, you may need to try something more dramatic.


Road trip! Consider taking younger kids to a science museum, puppet show, or zoo. Anything to spark their imaginations. When they're a bit older, canvas friends and relatives for opportunities to take your children to workplaces. You could go behind the scenes at a restaurant, veterinary clinic, or television studio. If you can't detect even a general interest to guide you, pick the most diverse jobs and workplaces you can access.


Children with autism spectrum disorders have different ways of thinking. We often can't tell in advance what's going to catch their interest. Giving them a wide range of experiences is like creating radar that continually scans for something that can motivate them.


This approach is most likely to be effective into the early teen years. When teenagers get older, suggestions from parents can meet serious resistance. That's when it's particularly important to network through support groups and other means and discover what other parents are doing. Some other mom or dad or grandparent or teacher may have come up a strategy that will work for your child, or you may find success by using their ingredients to create your own formula.


James Burke, a former BBC science reporter, makes the point that many brilliant ideas and inventions actually came from taking existing ideas and putting them together in a new way. He created a landmark TV series called, "Connections" that chronicles the phenomenon throughout history. (Actually, showing your children this series is a great way to expose them to a range of ideas and areas that could spark an interest. You can access it free on YouTube.)


Motivating your child may involve a lot of attempts that fall short, but what are the odds that a child fixated on gaming is going to turn off the game, turn on the light and find other motivations on his own?


"Help me Obi Wan Kanobe. You're my only hope."


Ironically, that's a quote many gamers would recognize and relate to.


The employees with Asperger Syndrome I mentioned earlier are succeeding using their interests in accounting, animals, researching, and filing and organizing with extraordinary attention to detail.


When should you give up? I like Thomas Edison's example. He tried about 10,000 materials to create a reliable electric light bulb before he succeeded. Edison reportedly said of the process, "I haven't failed. I'm not discouraged, because every wrong attempt discarded is another step forward." While looking up the Edison information, I ran across a quote from Robert Allen, "There is no failure, only feedback."


Every attempt may tell you a bit more about your child. And you never know when success may be one more attempt away.


ABOUT THE AUTHOR -- Dan Coulter is the producer of the DVD "Asperger Syndrome at Work: Success Strategies for Employees and Employers." You can find more articles on his website: www.coultervideo.com.
Copyright 2011 Dan Coulter All Rights Reserved. Used by Permission.

Thought For The Day

Autumn Leaves

Autumn is a second spring
when every leaf is a flower.

–Albert Camus

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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