Here are some resources and links that might be useful:
is the number one resource for everyone with a Rettchick in their lives. It is a
service of the International Rett Syndrome Association for their members. (If you are a
parent, and can't afford the membership dues, the IRSA will waive them for you - their
site is linked below).
Rettnet is provided so that you can have a unique and powerful source of information
and strength, each other. The contributions of wit, wisdom, joy and sorrow make the
Rettnet the touchstone that it is for many, connecting us heart-to-heart all around the
Join the RettNet
Inclusion Press publish a series of
books that are insightful, practical and highly useful for those on the road to inclusion.
D.E.A.L. Communication Centre
Centre, where Rosemary Crossley worked her magic and helped Rebecca
find a way of communicating with us.
Radio New Zealand, Replay Radio Tapes
Inclusive Education and Rebecca's story (descriptions below)
PO Box 123, Wellington, New Zealand
Fax: +64-0-4-474 1458
Phone: +64-0-4-474 1422
Tapes are NZ$20 plus postage and despatch
Celebrating Diversity - Quality education for all children
Interviews on Inclusive Education with
Jane and Gerard Hulst, parents: Mark Barratt, Acting Principal, St Michael's School,
Remuera: Marsha Forest and Jack Pierpoint, Canadian educationists: Bridgit and Gary
Snedden, parents: Judy Pickett, teacher's aide: Pete Douglas, student, Waitaki Boy's High
School, Oamaru: Robert Martin, People First
"Kids with disabilities can be the most powerful change agents in the
school system." - Marsha Forest
Produced by Dianne Stogre-Power for Replay Radio
First broadcast August-September 1993
The moving story of a child who's short life had a profound effect on the
community in which she lived.
Rebecca Hulst had Rett Syndrome. She couldn't speak or move voluntarily. She also had
severe screaming attacks, one of the symptoms of the disorder that affects only girls. By
the time Rebecca was three-years-old her parents, Jane and Gerard Hulst, resolved to look
at the things she could do and not the things she couldn't. Their love and commitment kept
Rebecca included in every aspect of family, community, school and church life. When she
died in 1993, just before her seventh birthday, five hundred people attended her funeral.
Her story is told by Dianne Stogre-Power.
First broadcast August-September 1994
Mothers From Hell
I love these women!
A story about Rebecca's life, with plenty of
photographs, written for her five-year-old school mates.
International Rett Syndrome Association
Rett HQ! This site includes the
Other RettChick's Pages
Lots of other RettChicks
The Brass Ring Society
was founded to fulfill the dreams of
children who suffer from a life threatening or terminal illness.
After The Death Of A Child
Living with Loss through the years
Ann K. Finkbeiner, ISBN: 0-684-82965-7
This book examines the continued love parents feel for their child and the many
poignant and ingenious ways they devise to preserve the bond. Finkbeiner's central
point is not so much how parents grieve for their children, but how they love them.
Each profile exemplifies the many heroic ways parents learn to live with their pain,
and by so doing, honour the lives their children should have lived.
I found this book very healing - Jane.