Kalon Women, May 2009


Raising a disabled child…  My Journey

My son, Nicholas was born three months premature.  He was diagnosed at one year with spastic quadriplegic cerebral palsy, then later with visual deficits and learning disabilities.  Little did I know, the evolution of my life would begin at that moment. For the next twenty-eight years, I would become involved in special education, law, medicine, mental health, family support services, social services and community, state and federal level advocacy.

My journey accelerated when I discovered the education system considers parents of special needs students ignorant and incompetent. It became clear to me that in order to insure the best possible education for my son, I would need to advance my knowledge and power by pursuing a specialized degree. Therefore, I went back to a university and obtained a degree in Child Development and Special Education.

Through that experience, I was able to transition my son from a segregated school to his local public community school in the least restrictive environment. Assistive technology has been paramount to the emancipation of my son Nicholas’s independence and to the improvement of his quality of life. This experience opened my eyes to the varied issues and complex challenges faced by special needs children and their families.  Since then, I have dedicated my life to pursuing, educating, advocating and evoking change for families and their exceptional children.

Through the years of working for an appropriate education for Nick, I realized that I was not the only parent going through this struggle. There were thousands of parents out there going through it too. But they didn’t seem to have any idea what they were doing and where they were going. I had figured it out! That maze of special education services and agencies that are supposed to be there for our kids. I had set myself apart from other parents. I had a vision—
a dream for my son. My son was born at Stanford Medical Center in Palo Alto, California. At his birth, I had a vision that if he lived he would go to Berkeley across the bay. That vision stayed with me for twenty years. I never lost sight of it. Everything I did was on the premise that someday he would go to college.

The first year of high school, when it came time to plan for transition we went to Berkeley to check it out. Nick said, “Mom Berkeley is a little far from where we live now in Southern California.” He was right I heard what he was saying. I respected his thoughts. So, I began to reevaluate where he would go to college.  It wasn’t Berkeley that was important; the fact is I wanted him to have the opportunity to go to college anywhere that would give him the supports and services he needed to be successful. We agreed that Santa Barbara was far enough away for him to have some independence, but close enough to home for his parents to be there if he needed help.

It was interesting, I thought when my son graduated from high school and moved out to live in the dorms of UCSB I would be finished. Hey, I had finally made it! I reached my goal for my son. I was on top of the mountain feeling such joy! Little did I know my journey of “self” was about to begin.

I decided to go through all of the materials, books, conferences, workshops, articles and “stuff” I had accumulated in boxes over 20 years. I went through everything. I put information into files and onto book shelves, in some kind of order. I felt that “if you build it they will come”. It took me eight weeks, everyday, all day going through my stuff. A few short weeks later the phone started to ring. I was now a resource for parents like me. I became a parent advocate— a consultant to help parents understand all of the systems that they are now living in. I call these systems “the maze”. In my consulting business as a parent advocate, I help parents develop a road map of what they want for their children and understand how to get it.

In the State of California, “The Lanterman Developmental Disabilities Services Act” defines the rights of Californians with developmental disabilities and ensures that they receive appropriate services. For Californians with developmental disabilities, the Lanterman Act provides a vision of individuals participating in valuable ways with their friends, neighbors, and co-workers in all areas of community life. The vision also includes people receiving needed supports so that they may have real choices in where they live, how they work and with whom they will socialize.

In 2003 our new Governor, Arnold Schwarzenegger, was looking at cutting the entitlement of the Lanterman Act. I was very involved with the public movement to organize, educate and bring people to Sacramento for many scheduled events like rallies, protests, and subcommittee hearings. One of these events was absolutely crucial in influencing Governor Schwarzenegger to change his initial decision to suspend the Lanternman Act. I was able to contribute positively to this instrumental event by coordinating the collective special needs groups and their presence at the Capital, for the “tree lighting ceremony” in December of 2003. One month later the governor rescinded his decision to suspend the Lanterman Act.

I know that going back and getting a college education changed my life and made a difference for my son. I also served as an intern at my local assemblyman’s office and learned how to advocate for my son at state agencies about denials or appeals for services and supports. I continued to learn about the legislation process at the state capital. Parents need to understand they are a part of this system and they need to get involved. Parents can’t stick there heads in the sand. If you don’t stand up for your child, then who will?

Parents don’t realize that they are small pawns in the system. The world they now live in was setup by our elected legislators. For the past seven years, I have been involved with legislators, lobbyist s and the legislative process in Sacramento. I try to collaborate closely with legislators and help them understand that every single day people with disabilities are affected by their decisions.

With the explosion of Autism in the last decade more and more parents than ever before in history are now facing the challenges that I once faced. This group of parents is different in that they are banding together as “one voice”. They seem to understand the necessity of a vision and a road map to achieve services. These parents want more for their children than ever before.

I have a unique understanding of the diversified issues our children are facing in these devastating economic times.  My vision and goal is to shed light and give hope to all parents. Parents can have a vision of success for their own children and they can make that dream a reality. If I can do it anyone can!

I’m proud to say in 2009, my son Nick lives in his own apartment with supports. He works for a state agency as an advocate and is an activist in his community for wheelchair accessibility. Nick goes to Sacramento to testify on legislation bills that could affect his life. Nick communicates with his local senator on issues that affect his community. My son Nick truly is on his own living his life on his own terms. That’s all I ever wanted for him. That’s what all parents want for their children. That’s the way it should be.