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Healthy Corner
Why Drinking Water is the Way to Go
How Chickenpox Got Its Name

 

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Featured article:
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22q News

If you have media coverage of 22q that you would like to share, please contact us!


The Northeast Georgian.com
Aug. 19, 2010

Kenny Wallace drives "Big Hope 4 Tiny Hearts" in NASCAR race


NapervilleSun
Aug. 26, 2010

Tix4Cause gets Dempster, national attention

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22q Kids

Welcome to 22q Central!

22q Central is a worldwide community resource center, 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. 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

Fighting the Good Fight

Parent's top tips for managing conflict as you advocate for your child.
By Great Schools Staff
Great Schools–Involved parents. Successful kids.

 
It’s inevitable: If you’re a strong advocate for your child, you’re eventually going to clash with someone. It might be a teacher, the principal, or even your spouse.

The complexity, emotions, and energy involved in parenting a child with special needs can take a toll on you and your relationships with others. So it’s natural that misunderstandings and conflict will happen at some point.

We surveyed parents of children with learning and attention problems about conflict in their lives. More than a thousand responded to our survey, providing tried-and-true tips for dealing with discord.

You're probably familiar with some of the advice that follows — and you may be using many of the strategies described. Yet, if you're like most of us, you will benefit from frequent reminders to help you stay on track. And you might pick up some new ideas or insights to add to your relationship repertoire.

Savvy strategies to prevent conflict
The best way to handle conflict is to avoid it in the first place. We asked parents for tips for advocating in a way that encourages cooperation from their child's team, rather than consternation.
Parents answered:

  • Be prepared and be clear about your objective. Have evidence to illustrate why your child needs help. Give specific, concrete examples (of both the difficulty and the solutions).
  • Have as much up-to-date data (testing, letters from professionals, teachers' statements) on your child before going into the meeting.
  • Know what you and your child are (and are not) legally entitled to. Know the laws of IDEA and use them.
  • Acknowledge whatever support the other person (such as the teacher) does give your child. Be respectful and empathetic; try to understand their perspective and challenges. "Let [teachers] realize that you understand the struggles involved with teaching, because you know how tough it is [to help your child] at home. Ask the teacher how you can support her," said Anne from Michigan.
  •  Be a team player; offer to do your part to help your child at home, and follow through. "Doing our share of the work … we follow our part of the IEP plan, make sure homework is completed, and attend IEP meetings," said Karen from Oklahoma.
  • When you disagree, "find a piece you do agree with, or a piece you can positively acknowledge in some way," advised Teresa from Maryland.
  •  Make the relationship about more than just your child's problems. Get to know the parties involved in other types of situations (for example, by volunteering at the school).
  •  Keep your emotions in check; don't make it personal. When upset, "I try to slow down my 'short fuse' and rethink the situation," said Cricket, a mother from California.
  • When all else fails, hire a professional (an advocate, attorney, etc.) to help you represent your child and his or her needs. At the very least, take someone (such as your spouse or a friend) with you to meetings.

Resolving conflict and restoring relationships
If all your attempts at avoiding problems fail — which, at some point, is bound to happen — try these parent tips on restoring your relationship with the team.
Parents answered:

  • Allow for a cooling-off period.
  • Apologize and admit to your role in the conflict. “The best thing to do is apologize. If there is nothing to apologize for, then apologize for a breakdown in communication," said Stacey from California.
  • Wipe the slate clean and then focus on facts, not feelings. “Remember that you don't have to like someone to have a working relationship with him," advised Cheryl from California.
  • Communicate in person, and be sure to listen.
  • Enlist a mediator or an advocate. A lawyer or advocate can help write a proper IEP and establish a level playing field. A mediator can help with the healing.

Building a support system 
No one should walk this path alone. Having support is the key to managing the myriad practical and emotional details that being an advocate entails, parents said.

We asked parents who they turn to when they clash with a member of their child’s team. The vast majority said they get support from their family (with lots of shout-outs to spouses) and friends. Others turn to fellow parents of kids with special needs, and around the same number rely on a therapist. Another great source of support and information, many parents reported, is books and websites.

Learn from your experiences
We asked parents about the one thing they wish they’d known when they first started advocating for their child. The number one response was: Trust your instincts! “When I listen to my gut, I know I will always be my child’s best advocate,” said one mom. Other parents said they wished they’d been better versed in the law and in their child’s specific disability.
“Don’t be intimidated by authority figures,” said another parent, while several wished they’d known more to “document, document, document.” Last of all, one parent offered this advice to newcomers: “Be prepared for a long, hard journey. Develop patience and persistence.”

Thought For The Day

Boy with umbrella
"Who dares to teach must never cease to learn."
read more inspiration
–John Cotton Dana
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 metalllic lapel pin, set with a colored stone of your choice.
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