Family Matters

An IRSF Family Advisory Board (FAB) Publication

December 15, 2009

Surviving the holidays: what’s your advice?

We’re asking you to help us gather valuable input from RettNet families on various topics with our “Family Matters” e-publication.

This information will be gathered and posted on the IRSF website for future reference.

Our topic this time is “Surviving the holidays.” How do you deal with the holiday season? Do you feel the extra expectations of your family are hard to meet? Do you have any extra help?

Share your stories about the ups and downs of the holiday season.

"I always found holidays tough with three children, one of whom had Rett Syndrome. My relatives always expected us to be at family gatherings, which was hard because of Aniko’s schedule. And I had little help, particularly since I gave my caregivers time off between Christmas and New Year’s. I finally had to stop this and make sure someone would come in on the 26th to give me a break," says Jane.

Do your relatives help with your Rett child over the holidays? Do you have special tricks for simplifying life? How do you deal with the blues? Any funny stories?

So, we’ll look forward to hearing from you, our Rettnet experts.

Kenna , Jane, Sherri, Paige, Jennifer and Lisa for the Information and Communication FAB subcommittee

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