Our daughter Molly is a loving and beautiful young lady...
She was born in the early 1990's and when she was about five months old we learned that she was a child with cerebral palsy, later identified as a rare mitochondrial disorder, and epilepsy.
My wife and I were initially shocked and saddened. A whole range of emotions, challenges, and new responsibilities overwhelmed us as we began a lifelong journey on a very different path than what we had ever expected or imagined. That journey continues today. Like all parents, our children remain our kids even as they become adults.
Fortunately, there was a system of support and empowerment there for us that - honestly - saved the life of our family. We will always be grateful for the California Early Start Program that was there for us in the beginning. We met many dedicated, caring people - providers and parents - who guide us and Molly as we learned to see with new eyes and walk in new shoes. As a father, I became involved in the family resource network for children with special needs and their families, and I found myself in a career of family support and advocacy.
Resources for TrailBlazing on a Road Less Traveled...
If you know a friend or family member who is concerned or has questions about the development of their infant child or toddler, please be aware that this can be a challenging time for them. Each person and family is unique in their experience.
If there are questions about a child's development, getting the best information and assessment to answer those questions as soon as possible is important. Here are some key links to information and resources that may be useful for parents and families who are on their own journey.
The California Early Start Program offers important assessment, services, and support for families of a child from birth to 3 years old. Often, connecting with someone who has a common experience is invaluable in adapting to things that happen to us in life.
WarmLine Family Resource Center in Sacramento, CA will have many family friendly links for information, training, advocacy, and support for children with special needs of all ages. The Family Resource Network will connect you to Family Resource Centers throughout California.
You will find credible easy to read information about disability and health issues at the National Dissemination Center for Children with Disabilities - (NICHCY) at the National Institute of Health. (NIH). there your will find information and resources for each state of the USA, including education resources for children birth to 22 years old, and much more.
The Arc of California is a grass roots advocacy organization working for quality of life, rights, and policy issues for individuals with developmental disabilities, their families , and the community; and preserving the Lanterman Act, a piece of legislation unique to California that ensures the civil rights of people with developmental disabilities.
Disability Rights of California is an excellent resource (previously called Protection and Advocacy) to navigate the system of support and where parents can learn to advocate for the rights of children and families in education and the community.
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.....our brothers, our sisters, ourselves...
The CTEC - Communication Technology Education Center is a program of The Supported Life Institute. CTEC is an organization of Speech and Language Professionals who specialize in AAC - Augmentative and Alternative Communication....for those who are unable to speak due to a disabling condition.
Feeling like a "TrailBlazer" because there are so many individualized struggles through uncharted territory that families like ours travel, I had the opportunity in the late 90's to facilitate a fathers forum that we called the Trailblazers while I worked for WarmLine Family Resource Center for over 12 years and had the amazing opportunity to meet and work with many families and providers dedicated to the well-being, understanding and inclusion of children of all abilities in our schools and communities. Now, as my daughter enters adulthood, my TrailBlazing continues as our community continues the struggle and perseverance on behalf of individuals of unique abilities in all walks of life.
This story continues and I will be updating this page continually with the hope of assisting others to find their way and to shine a light on the gifts, challenges, and benefits of diversity in our amazing world.