Family Matters

An IRSF Family Advisory Board (FAB) Publication

August 30, 2009

Fathers, what’s your favorite activity to do with your daughters?

"As simple as it sounds, my daughter and I love taking rides in Daddy’s truck together,” says Justin, father to six-year Jillian, who has Rett syndrome. “There is something about hoisting her high up into her perch in the back seat so she has a great view that has her giggling from the start. She knows what a special time is ahead. What may seem like any old trip to the dump, the bank or pick up dry cleaning quickly turns into our adventure. The rearview mirror is promptly adjusted, not so much to keep a watchful eye on her, but instead so we can make funny faces at each other and keep that giggle going. Of course the windows are down because she loves the wind on her face and blowing her hair that her mom just finished making perfect. As we cruise around completing our “missions,” the radio is no longer set on Dad’s station, but instead we enjoy the newest tunes from the Wiggles. Sure, sometimes we get funny looks from the group of guys on their way to play golf, but hey, they don’t have an angel in the backseat calling the shots.

As a Dad, it can sometimes be stressful to figure out new, exciting activities that she can actually take part in and give a positive reaction. Sure, there are many times when our rides around town are a bust. Seizures, sickness, crying, screaming fits and simple naps certainly do happen from time to time. Whether we are out for a ride or simply pushing her on swing in the backyard, my daughter cares more about who she is with than what she is doing. I know that she can sense the unconditional love I have for her and the special bond we have together."

Fathers, our IRSF Family Advisory Board and our friends on RettNet would love to hear your stories and advice about your favorite activity with your daughter. Just respond to RettNet on this subject.

We plan to file answers for others to consult.

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

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

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