“I Believe I Can Fly”: Lessons in Letting Go

By: Linda Brodsky, MD.

From the moment of birth, the sad but essential task at hand begins—leading our nearly helpless baby girls from dependence to independence. Nearly two decades will pass before total autonomy is realized, but only if we plan well and build on the strengths of the child and the opportunities life provides.

Sounds like a view from 65,000 feet, pie in the sky? I assure you it’s not. It’s the view that is taken from a group that has developed a philosophy, a model, and a strategy to reach that goal, so we can safely and effectively “let go.”

This weekend I attended a parent group conference—“Empowering Ourselves for a Brighter Future” www.dspgwny.org. It was a day-long conference which began with an inspiring keynote speaker, followed by workshops to impart knowledge to the parents of children with Down Syndrome http://www.ndss.org/ . Don’t stop reading because you have a “typically” developing child, one without the physical stigmata, the challenges of mental retardation and the burden of multiple medical problems that children and families with Down Syndrome face. The lessons I learned from the keynote speaker, Carrie Bergeron-Desai are important and universal. And so I need to share the lessons with you, because as was told to me that morning by this woman with Down Syndrome, “We are more alike than different.” And as I went through the day, I found this to be more true than I would have thought before I spent that day in what I had thought was another, unrelated, parenting world. What I came to realize was that the values Carrie holds and the outcomes she seeks are really not so far from my own and from yours.

What is different, though, is that in order to realize her dreams/our dreams, specific sights are set on what are the essentials in life. And I daresay that many of us do not give much thought to these essentials and just hope they will happen because we are good, loving parents. But in today’s world where so many of our girls are having trouble “growing up,” making good choices, and becoming self-motivated and self-sufficient, these “blueprints” might be more helpful than you think.

Carrie Bergeron-Desai is a 33 year old woman with Down Syndrome. She is a daughter, sister, aunt and godmother. She is a graduate of Herkimer County Community College, has a job and is active in community service. She lives in her own apartment and navigates her life independently, albeit with much support from family, friends, and therapists. Her life is meaningful, and here is why.

She has identified and internalized her 4 valued outcomes: to live independently, be gainfully employed, practice good health and fitness and engage in her community. Do these sound any different from what any of us want for our daughters? No, not really.
How did she get there? She was accepted into the NYS program “Self Determination Consolidated Support Service.” The fundamentals of this program is that careful planning is necessary to transform our hopes and values into the actions and feelings of independent, healthy women.

It starts with support from the gentle but firm cuddle as we cradle the nursing infant. And as they learn to eat, and walk, and talk, we are there with our support as they gain their freedom, one step, one day at a time. And this freedom means letting them make choices, small ones at first, and then later on, choices that might even result in mistakes and failures. We let them experience the consequences of their actions so they become independent and self-motivating.

Responsibility increases for their personal needs.Time management and organizational skills need to be imparted so they can take care of their own household and affairs. They must develop authority over their own lives, their own relationships and their own actions. And finally, they must learn to have a voice and have an opinion so they can advocate for their best interests.

It takes planning and it takes hard work and it takes courage. It take time and it takes thought. So take heart and consider your values and your actions carefully.

I was reminded of these important lessons last weekend from a Woman of Valor, Carrie Bergeron-Desai, a woman who happens to have Down Syndrome. The lessons from her life are most valuable and highly relevant to us parents who make that fearsome journey with our daughters as they go from tiny helpless infants to full grown, independent women.

ABOUT THE AUTHOR:

Dr. Linda Brodsky is a respected Pediatric surgeon advocate and mentor for the next generation of women doctors. She is an active blogger as part of NPR’s Talking Science blogger team (her section is “Like Mother, Like Doctor”) and on her own blog, The Brodsky Blog (http://thebrodskyblog.com) . On the Brodsky Blog, Dr. Brodsky addresses topics such as gender equity/inequity in health care and the issues faced by women in the medical field.

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