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Connie Siskowski, Caregiving Youth Advocate

Published on 11/02/2017

What is your life’s purpose?
To act justly, love mercy, give grace, and walk humbly with God.

How are you living your purpose?
The nonprofit I founded, American Association for Caregiving Youth (AACY), has set our goal for no child in the US to have to drop out of school to provide care for family members. We want youth caregivers to be valued and supported—in school, out of school and at home—so they can complete their education, live up to their potential, and become healthy productive adults.

At AACY, we work with systems of healthcare, education, and the community to raise awareness and support youth caregivers in school, out of school and at home.  Some services we are able to provide directly such as Skills Building groups and our overnight Camp Treasure.  Others we collaborate with many community partners to provide resources to our families, which may range from a prom dress to beds to building a ramp to making a home accessible.

We strive to educate healthcare professionals about the reality of kids as caregivers and the impact on their well-being. To raise awareness among pediatricians, we are pushing an initiative for the American Association of Pediatricians to pass a resolution to include identifying youth caregivers at the time of a physical and also to encourage research. We work with schools to identify youth caregivers and to support these students throughout their education. Community partners use their expertise to provide additional support such as respite and tutoring.

With girls at Camp Treasure

We have a “can do” philosophy of trying to find solutions to issues families face rather than provide Band-Aids. I have no expectation from our team that I would be unwilling to do myself—there’s no such thing as “it’s not my job.” I also lead a virtual Bible study and try to be respectful of others and their beliefs in all that I do.

My husband remarks how my glass is always half full; I maintain a positive attitude and seek to “make lemonade” as much as possible. The organizations to which I belong must be consistent with my values.  I have been honored to become a Dame in the centuries-old Order of St. John of Jerusalem. Also, I lead a weekly virtual Bible study: Anyone is welcome to join by simply emailing me at csiskowski@gmail.com.

With Anderson Cooper, being recognized as Top Ten CCN Hero

How did you find your purpose?
I didn’t find it—it found me! I had gone back to school to get my Ph.D. and in doing my doctoral research I had the opportunity to attach a family health section to a large (12,000+) county-wide survey of middle and high school students in Palm Beach County, FL. Through this, I discovered the extent to which kids were impacted academically by family caregiving responsibilities. When I received the call from the Principal Investigator who had just gotten the initial data back, I felt compelled—some would say “called”—to find solutions to this problem. It resonated with me due to my own experience caring for my grandfather at age 13—and finding him no longer breathing one night when I went to give him some medicine.

Perhaps I have been guided all along the way by my background is in nursing, my master’s in public administration, and my doctorate in educational leadership. With a multidisciplinary approach and an openness to creating the best program possible, our AACY team has achieved greater than 95% graduation rate among the young people we serve.

A home visit with a family

What advice do you have for purpose seekers?
Does one really set out to find a purpose? If so, find joy and work to make a difference, however small, in the lives of others. Work on systemic solutions, not only Band-Aids. Listen to your heart and your gut. Pay attention to red flags. Build relationships and trust with people who do what they say they will do.

Protect our environment and your mind/soul from pollution. We should respect our planet and our resources to be mindful of how we use and not abuse them. Garbage in/garbage out is ever so true so make choices wisely. I believe in recycling as much as is possible. Littering anything is repugnant to me. I don’t watch “R” rated shows or participate in activities that are violent or seek to destroy anyone else.

Life for me is about balancing time with family, especially my husband and good friends, and leading an active lifestyle that includes tennis and golf.

With a young caregiver, Ginelle

What resources do you recommend?
The Bible is my favorite book. It is like viewing a fine work of art, always revealing something previously missed.  Through it, we have freedom with the provision of life rules.

If you’d like to learn more about youth caregivers, I recommend:
I’m Not Alone: A Teen’s Guide to Living with a Parent Who Has a Mental Illness
I’m not Alone supports teens whose parent has bipolar disorder, depression, or schizophrenia.

Finding My Way: A Teen’s Guide to Living with a Parent Who Has Experienced Trauma
Finding My Way examines the teenager’s experience of having a parent who has endured trauma-ranging from military combat to domestic violence to 9/11 to natural disasters.

National Alliance for Caregiving
Caregiving Youth Institute
AFA Teens (Alzheimer’s Foundation of America)
Bookend Caregiving
Caregiver Action Network
Family Caregiver Alliance
Today’s Caregiver
AARP Caregiving

Connect with Connie Siskowski, RN, PhD
Email: connie@aacy.org
American Association for Caregiving Youth
Book (I wrote the foreword): I’m a Teen Caregiver. Now What?  
Twitter: @AACYorg
Facebook Page

Educated at Johns Hopkins and New York University, she obtained her Ph.D. in 2004 from Lynn University. Connie never expected her doctoral research to uncover the high prevalence of family health situations and concomitant caregiving with detrimental academic effects upon children in Palm Beach County. 

Her broad background in healthcare and dedication to diminishing caregiver struggles led to the 1998 establishment of a nonprofit organization which has transformed itself to become what is now the American Association for Caregiving Youth (AACY), headquartered in Boca Raton, FL.  

Today AACY includes the Caregiving Youth Project of Palm Beach County, the first US program to support the hidden population of child caregivers; an affiliate network for organizations to replicate various aspects of the Project; and, the Caregiving Youth Institute with its Caregiving Youth Research Collaborative. The needs of these children are beyond the purview of any one system so AACY integrates healthcare, education and the community (body, mind, and spirit) to provide a strong foundation for the youth and their families.

During the past five years, Connie was awarded a lifetime Ashoka Fellowship; won a Purpose Prize (a national endeavor honoring persons over 60 years of age who initiated social change); received the Distinguished Alumna Award from Johns Hopkins University; was named a Woman of Grace by Bethesda Hospital Foundation; became a 2012 Top Ten CNN Hero; received the Office Depot Listen, Learn and Care Award; and, was awarded a star on Boca Raton’s Walk of Recognition.

HeleneTStelian Musing
I’m Hélène Stelian, the Midlife Mentor with a passion for facilitating personal development in women 40+. Through my THRIVE Courses, I help introspective, curious, action-oriented women 40+ deepen their journeys of self-discovery and growth—and create their next chapter with courage and intention.



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