If you are a part of the VCFS/22q11 community it would have been hard for you to miss out on all the hype that has surrounded the last 24 hours across the world in relation to VCFS/22q11.2 deletion/DiGeorge/Shprintzen Syndrome etc..
In 65 Cities and in more than 13 countries spanning 3 continents thousands of people joined in the campaign to raise awarenss of 22q11.2 Deletion Syndrome. The second most common genetic syndrome in the world!!!
This initiative began as a local awareness campaign organised by the International 22q Foundation, the 22q and You Center and The Dempster foundation, however with social media it has become a phenomenom for all those affected by 22q11.2 Deletion
It really doesn't matter what organisation you are a part of, support, rely on etc... This day has proven that we are a community. A community of medical professionals, patients, celebrities, families, educators, not for profit groups and support groups.
Our qualifications, prestige, celebrity, income and demographics were pushed aside for the first time and we were all equal and joined in our reasons for being a part of this day. That is to RAISE AWARENESS OF 22q 11.2 DELETION SYDNROME.
Lets keep this rolling, lets continue to be united as one, lets forget the arguments about what it should be called, lets put our egos aside, lets learn from each other!!!!!!!
We are all in this together that is for sure. Lets remember the saying
"UNITED WE STAND DIVIDED WE FALL"
Congratulations to each and every member of the VCFS/DiGeorge/Shprintzen and 22q community.
Maria
Does it feel like your “stress temperature” has gone up around ten degrees the last few years? According to the American Psychological Association’s Stress in America survey, your kids are feeling it too. The new survey details the impact of different types of stress on the family, and the news raises some serious concerns about how children are coping with it. According to the survey, 17 percent of children who say their parent is always stressed are likely to feel high levels of stress themselves compared to two percent of kids who report their parents are never stressed. This means that children are not only aware of the family stress, it is increasing their levels of stress as well. The ill-effects of stress on children’s health is a serious problem, and we know from research that experiencing family stress creates unhealthier kids. The APA survey provides further data that suggests children and teens likely often turn to unhealthy eating or passive, inactive behavior to cope with stress. TV watching and listening to music are higher in stressed tweens and kids, perhaps contributing to the higher levels of pediatric obesity measured over the past five years.
Far from being “character building” for children, stress places children in a situation in which they are worried but have little or no power to correct the situation. Children are perceptive, and quickly pick up on parents’ frustration, more frequent family arguments, and negative changes in the emotional tone of the family. What happens when they feel this tension but can’t do anything about it? Children translate these feelings into bad habits and behaviors. The APA survey found that parents typically underestimate the amount of impact their levels of stress have on children in the family, which is easy to justify when parents are worried about a job or financial situation.
Given the fact that parents have real worries and that they can’t just make their own stress disappear because of the kids, what can be done to help kids with the situation?
- Watch those negative offhand comments – Its natural to express the stress through comments like “We’re stuck” and “why does it always happen just when we are getting back on our feet,” but kids take these comments literally. Try to replace these comments with suggestions for action instead, like “we’ve really got to figure out a plan to deal with our bills.”
- Take a walk instead of turning on the electronics – Role model good stress management by asking the kids to take a walk around the block or playing catch in the backyard. Even a small amount of physical activity can help reduce stress.
- Teach the kids to be solution-focused instead of worry-paralyzed – Ask kids about their own levels of stress and worry, and help them understand how having a plan can make the situation better.
- Make ‘em laugh – Laughter goes a long way in busting through tension and worry. Try a family joke night or funny mime competition to keep things funny and active at the same time.
