Hopes and Dreams, by Kim Hewitt
 Beginnings, by Joan Sylvester

Hopes and Dreams
by Kim Hewitt

It seems like only yesterday that we moved to Vermont, but it was actually just about 20 years ago.  Sitting around the kitchen table with several other dedicated and supportive parents who had lots of hopes and dreams for their children with disabilities, laying out goals and objectives for a new organization called Parent to Parent.  The new model of "mainstreaming" was just beginning, and it was very exciting to be in Vermont and be a forerunner in this inclusive model where our kids would be included in the regular classroom and not hidden away on the basement floor.  People from all over the US were coming to Vermont to see how we were making it happen. 

When our first born, Corinne, was diagnosed with Dubowitz Syndrome, there was little information about the syndrome and what to expect.  Through lots of good collaboration with school personnel and hard work, she has now graduated from Mount Abraham Union High School and is working at Shaw's in Middlebury and volunteers at the Addison County Community Action Group, Food Shelf and the Child Care Center. This is a young adult who the medical professionals said would probably not walk or talk and that we should put in an institution.  She is now an active member of her community.  Her brother Kyle is at Colorado College and her sister Sarah is climbing in India.  Ken is still a Systems Manager for a small firm in Brandon and I will graduate in May with my Masters Degree in Special Education with a concentration in ED/Consulting Teacher from UVM, where I will continue to advocate for families and kids with disabilities.

This has not been an easy road, as we all well know, and there are still curves and hills to climb, but when the going gets rough it is nice to know that you can pick up the phone and talk with another parent who will listen, encourage and be there for you.  Without the loving support of Parent to Parent the road would have been a lot bumpier.

All our hopes and dreams are staying alive and happening thanks to the loving support of families like you.  Keep the support, education, and awareness going.  It makes all the difference.  Being a part of the Medical Education Project from the beginning, I can see the changes in the medical students and their sensitivity and awareness towards kids with special needs.  They are much more caring and listen to the parents more and now there is talk of family centered care with a strength based model.  Hoorah!

Good luck to you - Nancy - you've done a great job keeping and growing the dream.  There is nothing like the kind of support offered by another parent who has experienced a similar situation.  Knowing that you're not alone and can share your feelings with people who can really empathize because they've been there too.  Here's to 20 more!  ©

Beginnings...
by Joan Sylvester

Beginnings-where to start? 

For me, it all started in 1967 when my niece Cathy was born & diagnosed with Down syndrome.  There were few resources available-the attitudes that seemed to permeate the hospital and medical community were tainted with sadness, tragedy, low expectations….not much of a future.  It was the luck of the draw if one was able to meet another parent experiencing similar circumstances. 

One organization that was working on this problem was the Champlain Association for Retarded Citizens (CARC), which Joe Ebenhart and other parents started in the early 1950s.  These parents had banded together and started an education program for their sons and daughters.  They offered support, advice and guidance.  Somehow, we did find our way to CARC!  It became our lifeline - we attended monthly meetings and became active members.

Realizing the need for advocacy and direction, CARC hired its first executive director, Sr. Janice Ryan in 1974, and opened its Burlington office.  I became her associate in 1975. Janice served in this capacity for 5 years and did more in that time to lay a foundation of community services via the Legislature for people with developmental disabilities--group homes, respite care etc. and S-98-Vermont's first Special Ed law for all students with disabilities.

Parents supporting parents and networking with each other was done very informally then.  There was a Parent to Parent committee that worked on this.  We were very concerned about the medical profession and wanted to make inroads where we could really formally link parents to parents at the hospital. It was through a United Way Special Projects grant that enabled CARC to formalize parent to parent support.  We were able to hire very part time staff, produce a brochure and begin identifying parents willing to serve as a "mentor" for other parents. 

We were able to garner more funds through foundations, United Way and other sources to become a program unto itself.  Parent to Parent hired full time staff in 1984, and by that time CARC had re-located to Winooski.  Parent to Parent was an integral part of CARC, and in 1987 it became an independent statewide organization, expanding its programs and services.

None of us can overstate the power parents have, their expertise, and above all, their caring for one another.  It is parents supporting other parents, which is the essence of Parent to Parent.  When a child is born and given a "label", suddenly parents find themselves in another world with little or no guidelines or map.  It is by linking with another parent that they find their way out of the maze.

Congratulations on your 20th year.  I am so proud to have been a part of its beginnings in the early 80s.  Thank you, Nancy, for all that you and other parents do to teach others and to share your wisdom and love.  God bless.

Joan Arnold Sylvester was the Executive Director of CARC from 1982 - 1994

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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