The last approved project is a regional initiative to support the siblings of disabled children living at home. A regional parent association, based in Longueuil, is operating the project through a $70,000 + donation from the foundation over 3 years.
Sibling project – a summary (document in French)
Projet Fratrie: Siblings Regain their Place in the Family
The Association régionale d’autism et TED-Montérégie (ARATED-M) launched a 3-year sensitivity programme for siblings of autistic children in the region, with the financial support of the Butters Foundation from its “No One Turned Away” campaign. The project featured a week-long (5-day) retreat during the winter public school break, with follow-up sessions for individual children as required. Each year close to 15 children participated in this activity, (with many repeats). This was an experimental project based upon the research of a prominent researcher in autism at the UQAR (Lévis campus), Dr. Hubert Gascon.
The results of this project are quite revealing and are enclosed in a final report of the association (Projet Fratrie) which is available at www.arated-m.org. The project revealed that the siblings of autistic children are often neglected due to the pressures of time and energy on parents meeting the challenges of an autistic child. This was not a surprise however, what stood out in this project was the reaction of the siblings. They resented the parents rather than their autistic brother or sister, for this situation. These feelings of resentment led to a distancing from parents and a general withdrawing from family life. The annual week-long discussion and activity session allowed these children to see how other children in the same situation were feeling, and how they were coping with this difficult situation. They also were helped to understand the challenging situation their parents faced on a day-to-day basis. Parents, on their side, revealed that their normal children appreciated these retreats and returned home with a new and more positive attitude. They also made new friendships which have been sustained in the months that have followed. Feedback from parents has been most positive and has encouraged the association to continue this project in the future with other sources of funding.
Interest from other regional associations has encouraged the ARATED-M to put together and publish a guide book for the use of other like-minded associations who would like to explore this issue in their area. Publication is planned for the end of 2013 and information will appear on their website as it becomes available.
The plight of siblings of autistic children has been a neglected topic in this field for some time. This project joined researchers, service providers, parents and a committed charity in an effort to focus on this enduring problem for families struggling to raise an autistic child. The ARATED-M is committed to pursuing this issue and to helping other regional associations tackle the problem of sibling neglect and self-worth in today’s family life.