In 1983 three mothers, Joan Kilburn, Ning Douglas, and Barbara Alexander, gathered around a kitchen table in Mill Valley, California, to share the challenges, heartbreak, and frustrations of raising a child with special needs. At the time, there was no place for a family in crisis with a diagnosis to turn to for compassion, encouragement, support, or information. Forming a network of parents, they decided to educate, support, and encourage families who were facing the same challenges they had faced alone. Together, they founded Matrix Parent Network & Resource Center, a 501(c)(3) non-profit organization formed to serve families of children with special needs in the North Bay.
From that kitchen table in 1983, in 1990 Matrix grew to be part of one of the first OSEP-funded Parent Training and Information Center (PTI) grants, bringing training, information and parent to parent support for a large area of Northern California. The founding mothers were firm believers that experienced parents could provide services to other families like their own, making critical connections between families of children with special needs.
The PTI model served as an inspiration when California was in the process of implementing early intervention services for infants and toddlers with special needs. Joan Kilburn polished her advocacy skills by working with other parent leaders, Legislators and California’s Department of Developmental Services to ensure that parent to parent support was truly incorporated into California’s Early Start program by the creation of parent-run Family Resource Centers (FRC).
These Family Resource Centers and Parent Training and Information Centers served as a basis for the legislation that created Family Empowerment Centers, once again through the mentoring and skill of Joan Kilburn and the parent leaders in California who dedicated countless hours to growing and strengthening California’s parent network.
Ning Douglas created the Fragile Infant Program, where families found emotional support as soon as their young one was identified. For some families this happened within hours of the birth of their child, assuring families they were not alone on this new journey they were starting. Ning also ran parent discussion/support groups at early intervention programs. The babies and toddlers would be with early intervention specialists and Ning would bring the parents together to talk and be supported. These parent to parent services were soundly incorporated into the statewide FRCs.
Barbara Alexander had vast experience with learning disabilities and mental health services. She worked tirelessly with thousands of families whose children experience the “hidden” disabilities, teaching, training and mentoring families to become their child’s best advocate. Even since retiring, you will find Barbara continuing to train, mentor and advocate in her work for NAMI, National Alliance for Mental Illness.
Each of the founding mothers had an interest and more importantly, a skill, that when combined, created the incubator for the organization of Matrix to grow to where we are today. And for that, the families of children with special needs are very grateful.