Spring 2004 - In this Issue: From our Director Family Support Report Family Voices of Vermont 20th Anniversary Reflections Family-Centered Care Thanks to David Stifler, MD Interview with Don Swartz, MD Books & Beyond Heartfelt Thanks Our Calendar | News & Note

When our youngest child, Brett was diagnosed with mild cerebral palsy in 1976 what I most wanted was to talk to another parent who might have experienced my same emotions of sadness and wonderment about what our lives might be like.  In his first year, our son was adorable for sure, but he seemed to be developing differently from his sister Jenn and brother Derek - he seemed to "startle" frequently, smirked but never smiled and seemed completely left-handed.  Brett was six months old when he was diagnosed with cerebral palsy and just a few months later we learned he had a seizure disorder.  From the very beginning, our family was blessed to have Dr. Midge McKee from the Child Development Clinic, Ruth Dennis as his Occupational Therapist, and Dr. Marshall Land as his pediatrician - they all encouraged, supported, and celebrated every milestone our son achieved.  As helpful as each professional was the most helpful person to myself and my family was a parent with whom I spoke just days after learning about our son's diagnosis.  Lee Viets, then Director of United Cerebral Palsy of Vermont (UCP) answered the phone at her home late one night  -9:40 to be exact (parents remember these moments) - and told me how important it was that we had learned about our son's condition so early - early intervention would make a difference.  Her words of hope and an invitation to become involved in UCP's advocacy were more than a comfort, they were life altering.   I tried to join a support group soon after our son's diagnosis but was told the only group available was for families with children who had more significant "involvement". Was I supposed to feel less sad because my son was diagnosed with "mild" cerebral palsy?  The Child Development Clinic, part of the VT Dept of Health, provided direct and consultation services to Brett and our family for 18 months, after which family, friends, neighbors, Jean Goldhabber and Nell Ishee from the Children's Space, and our community recreation program became our "early intervention" team.   It wasn't until the passage of the Education of the Handicapped Act Amendments of 1986, PL 99-457 that a diagnosis alone of cerebral palsy would qualify a child for early intervention services. In 1985 I learned of an emerging peer support initiative called Parent to Parent sponsored by the ARC in Chittenden County.  I volunteered as part of the initial cadre of Supporting Parents - along with 13 other parents eager to become a confidant, a mentor, to another parent.  Though not a support group, through training in preparation for our support role, I finally experienced the wisdom and support that can only come for another parent who has "been there". It has been my life's work to ensure that all families - no matter a child's diagnosis - have access to the support they desire.  Parent to Parent's peer support program which incorporates support from our staff of experienced parents and a statewide network of volunteers is beyond compare. Having participated in a research effort in collaboration with the Beach Center at the University of Kansas along with colleagues from Parent to Parent programs in four other states we know peer support works - we know that "perceived sameness" is an essential ingredient to a successful match and we've dedicated ourselves to implementing a protocol to ensure we are held accountable for best practices in peer support.    My reflection is intentional - I'm retiring from Parent to Parent in June after almost 18 years.  My son is getting his masters in special education at the University of Vermont, his fiancé is doing the same at St. Michael's College.  Our network of Supporting Parents, now over 300 strong, is available to support any family - it matters not your child's diagnosis.  In addition, over 100 Family Faculty teach family-centered care to medical students, pediatric residents, educators and allied health professionals and we have a place at the table to determine policy and practices that effect children and families in Vermont and nationally. It has been a privilege to serve as Executive Director of this organization.  I'm grateful and humbled by the experiences of families, your dedication to each other, and commitment to Parent to Parent.  The leadership of parents, sustained support of our partners, dedication of staff, and commitment from our Board will make certain the mission and vision of Parent to Parent of Vermont continues.   Best Wishes,                      Nancy DiVenere

   |  Please click for June Retirement party invitation
Spring 2004 - In this Issue:
From our Director
Family Support Report
Family Voices of Vermont
20th Anniversary Reflections
Family-Centered Care
Thanks to David Stifler, MD
Interview with Don Swartz, MD
Books & Beyond
Heartfelt Thanks

Our Calendar | News & Note

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