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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

The Birds, The Bees,
and the Elephant in the Room

By Dan Coulter

Let's be honest.

The reason many parents dread having "the sex education talk" with their children is that dad and mom are nervous that the kids will ask them about their own intimate interactions. It can feel worse than having an elephant in the room. It can feel like having a male elephant in the room in a state of visible excitement. But it doesn't have to play out that way. And there are real consequences of avoiding "the talk."

By the way, because I distribute these articles via email, I have to be careful that spam filters don't mistake a communication about puberty for something else. So, from this point, when I mean sex, I'll substitute the word, "sax."

This is highly appropriate, because after the saxophone was invented by Adolph Sax, it was denounced as "the devil's horn." Why? It allegedly created lustful thoughts in those who heard it played.

But back to the importance of "the sax talk."

Not opening lines of communication about sax with your children puts them at risk of making costly mistakes out of ignorance -- and robs you of the opportunity to share your values and advice.

So how do you open the door to topics you need to discuss without inviting the children into areas that are too personal? Make that a part of the discussion. Explain that responsible adults have a right to keep some things personal and private -- and an adult's sax life is one of those things. If you approach the subject matter-of-factly and confidently, you can stay in the Goldilocks zone. Not too hot and not too cold. You'll gently deflect questions that you feel would compromise your privacy, but encourage those that help your child understand what he or she needs to know.

In surveys, kids say that their parents influence their decisions about sax more than any other source. Nine out of ten teenagers say that it would be easier to avoid sax if their parents talked openly and honestly about it. (Source: The Adolescent Pregnancy Prevention Campaign of North Carolina.)

Traditionally, we think of dads talking to sons and moms talking to daughters about sax, but that really depends on family makeup and aptitudes. In single parent homes, or if one parent or the other is a better communicator, there's no rule that says he or she can't cover the territory for boys or girls.

But if there are reasons you feel that you can't have the initial talk yourself, you may want to ask a counselor or therapist with expertise on the subject to do the honors. You might ask a family member, like an aunt or uncle. Hopefully, that would be an initial bridge to help you and your children have further conversations. It's important for kids to know that sax is anything but simple, and that you're available to discuss "saxuality" with them when they have questions.

Growing children also need to see saxuality as it's integrated into their entire lives, not just as the act of having intercourse.

One of the best forms of sax education is seeing how mom and dad treat each other. Children need to learn that kisses and hugs and caring conversation in the kitchen are as much a part of an intimate relationship as what happens in the bedroom.

In these days of divorce, single parenthood, and non-traditional families, we can expand that to say it's important for children to see how any two caring adults treat each other as a couple. And that respect and affection play just as big a role as sax.

You don't have to reinvent the wheel here. There are lots of great materials you can use to support your communications, including those with graphics that can convey what words can't. Of course, it's a good idea to preview any materials yourself before you share them with your children.

"The talk" can be one of your best moments if you project confidence, guide the discussion, and keep your sense of humor.

You won't have to worry about the elephant in the room, because you control the elephant.

If you like, you can put him in a pair of pants...or give him a saxophone.

ABOUT THE AUTHOR -- Dan Coulter is the author of the DVDs, "The Puberty Video for Boys with Asperger Syndrome (and Autism Spectrum Disorder - Level 1)" and "Managing Puberty, Social Challenges and (Almost) Everything: A Video Guide for Girls." You can find more articles and information on his website: coultervideo.com.

© Dan Coulter 2014 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/birds-bees-and-elephant-room

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22q Central is on

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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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