Q&A with Tania Weissberg – Apert Syndrome Activist

  

 

  “We travel light, even though that requires a stroller, medication, diapers, food and   beverages, I don’t make myself crazy.”  

Q&A with Tania Weissberg Apert Syndrome Activist

photo credit Tania Weissberg

Please introduce yourself and your child
Hi, my name is Tania Weissberg, and I am live with my child in California.My son who just turned six years has been diagnosed with Apert Syndrome since birth and is unequivocally the guiding light in my life.

Describe your philosophy to educating him
My gestalt is that education is entirely different than child rearing.Imparting knowledge upon someone can be done by taking trips and marveling at the scenery, whereas “bringing up babyrequires an open mind and the ability to make choices, define goals and set limits.And that philosophy distinguishes us parents, from teachers or care providers.I have tried to teach my son life coping skills and promote his independence alongside helping him reach his full potential in our society.

Describe your preparations and items you bring with you  on a typical outing or trip
My son loves going places, so it is never that hard to get him excited about going anywhere.He enjoys short and long outings equally and has never given me much grief.
I usually break the news about our upcoming trip a few days before hand, and it works fine for us.

I make a point of traveling light, even though that still requires a stroller, medication, diapers, food, and special beverages. I try to remember everything, but I don’t make myself stir crazy over it.If I forget anything on my list, so be it! If my son doesn’t have his i-Pad, then he doesn’t have it -that’s real life, and he will learn to deal with it!
Giving children what I call “crutches,”  makes them dependent, needy and ultimately not the best travelers! Parents need to teach and foster flexibility in their kids as part of preparing them to adulthood.

Why you still enjoy it?
We enjoy travel because I regard it as the privilege of sharing other cultures and different places with my son.It also expands both horizons and enriches our souls, maybe in different ways which are all fine with me.I know he learns a lot in his way, so I’m not concerned about his level of undertanding everything that goes around him.And the silver lining is that it starts the conversation about Apert’s so in a way we are raising much-needed awareness everywhere we go.

 

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