By Janet DesGeorges
This article is dedicated to Jane Miller, the first parent who taught me to speak up!
Do you have time for "advocacy" in your schedule? When my child with special needs was born, the journey our family embarked on was a very personal one at first. The identification of hearing loss in our daughter thrust us into a system which we were forced to navigate with no previous life experience. We needed to make choices for our daughters' therapies, education, funding issues, and medical interventions. We needed to learn how to differentiate between professional opinion and facts. We were only concerned with the specific choices we as parents needed to make for OUR daughter, and were not even thinking about the "system" which was in place in our community and state, except how it related to the services our family needed.
As time went on, however, an interesting thing started to happen. I had the opportunity to start talking to other parents of children with special needs. In our conversations, I realized some of the obstacles we had encountered with our daughter in the "system", were exactly the same obstacles which other families were facing. I also realized that other families were able to advocate for their own children and get some services which I didn't think were possible. Advocacy skills began to grow in my life as I watched other parents "push" the system on behalf of their own children. I began to meet advocates in our community who were "pushing" the system, not only on behalf of their own child, but on behalf of all children! What a concept!
A great example of advocates in our community who are "changing the world", are Bruce Goguen and his wife Robin Buldac, who have been recently acknowledged by the Daily Camera's Pacesetter Awards in the quality of life category for their work helping people with disabilities. Bruce and Robin are the directors of Statewide services for United Cerebral Palsy (UCP), in addition to their involvement with other local community organizations which support people with disabilities. Robin, who's journey of advocacy started when she had to fight to get her own daughter, who has Down's Syndrome, into her public school system, has since worked on policy legislation which has changed the lives of thousands of families. Bruce and Robin are shining examples of the influence parents can have in a "system". There are dozens of parents in our community who are working on behalf of not only their own children, but advocating on behalf of other parents and children as well.
We often think of parent-to-parent support fulfilling only one need, a vehicle for emotional support from "one who has been there". While emotional support we as parents give to one another is absolutely essential and life-giving, what happens when a group of parents get together can extend far beyond that. We as parents share some common threads in our experiences: A lifetime commitment to our children, A parent's unconditional love, the ability to see our child as a "child"- not a disability, and the right and responsibility to choose what we feel is best for our child. Coming together as a group builds strength and confidence in our rights to speak out on behalf of our children!
There are many parent groups in Boulder County that you can become involved in! A list of groups can be found in the Daily Camera, through your service coordinator with Part C, through your school, and by just asking around. Some of the groups are listed throughout this newsletter.
Yes, we all lead very busy lives, and the time constraints of a parent who has a child with special needs can be especially stressful. But advocacy, whether for your own child, or on behalf of the "system" is a fact of life for parents. Get empowered from other parents! When parents get together, good things happen!
Janet DesGeorges lives in Boulder CO, is the mother of three children, and is the Executive Director of Hands & Voices.
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