Raising any child is a loving exercise in planning for the future. Parents hope to maximize their children’s potential for success and happiness. They provide their children with strength through love and support. They provide them with knowledge through education and exposure to varying experiences. They plan for their children to safely and successfully leave home and enter upon a fulfilling adulthood.
When you’re the parent of a child with special needs, planning for the future takes on an urgent and complicated meaning. Unlike other parents, you anticipate that your child may be dependent upon you for his or her home, his standard of living and social structure as an adult. Your concern for the future projects well beyond the age of adulthood.The upper most question in the mind of every parent of a child with special needs is: What will happen to my child when I am gone?
My wife Deborah and I developed our expertise in protecting the interests of the special needs children because three of our five children have Fragile X Syndrome, an inherited condition that causes varying degrees of mental and physical disabilities.
When Deborah and I married we hoped for a large family. We are each one of 12 siblings-in my case, the family included six step siblings and five natural siblings, none of whom are Fragile X carriers. Deborah has five sisters, and all six are Fragile X carriers. Our first two children, Jacob, and Sophia, each were diagnosed with Fragile X, the most common inherited cause of mental impairment, occurring in approximately 1 in 3,600 males and 1 in 4,000 to 6,000 females. We had a third child, Thomas, and Mary followed, and neither is affected by Fragile X. Liam is our youngest and also has Fragile X. Jacob, Sophia and Liam are all seriously impaired.
I recall the day Jacob was diagnosed; we were on our way home from the doctor’s office in a rainstorm when we saw a 10-year-old nonverbal boy sitting in a puddle. We called police and when they came they said they did not know what to do. We sat there for two-and-a-half hours finding someone to help the boy and the whole time my wife is sitting in the car crying about Jacob. I realized then I had to become an advocate. It turned out the boy had wandered away from a group home. I began to become involved with groups that help educate police about mental disabilities and the resources that are available.
I am an impassioned advocate for families like my own. I spend many hours working with officials at both the state and federal levels lobbying for the funding of research, education, and services on behalf of individuals with special needs.I testified in front of Congress on the increasing population of Autism in America. I am also the father of the ABLE account which has allowed millions of individuals with Autism and Intellectual Disabilities work and save money without losing their Social Security Benefits or Medicaid Services.
I am involved with family groups and various advocacy and research organizations, including the M.I.N.D. Institute (Medical Investigation of Neurodevelopmental Disorders) at the University of California, Davis, where I served on the board for seven years. I co-founded of the Center for Autism and Developmental Disabilities at Philhaven (WellSpan) which treats over 2000 children per year with Autism and Intellectual Disabilities. I’ve had the opportunity to serve on several national and regional boards including the National Fragile X Foundation, the Corporate Board of the Special Olympics in central Pennsylvania, the National Autism Society of America, and A Gift of Smiles.
My advocacy is intertwined with my professional interests. As a parent and CEO of Grandview Asset Management, I saw the need to provide guidance to families like mine. Part of my work involves providing financial advice to families with special needs individuals and helping them plan for the future. I decided to expand my focus and founded Special Planning LLC, a firm focused solely on providing financial and life planning services to families caring for individuals with special needs.I want to be a resource to families because I believe getting people the right advice is important.
From my perspective, I believethat for someone who is disabled or economically challenged or born in the wrong part of town deserves just as much of a chance as anyone else. If you have been successful, you have a responsibility to help people.
Having disabled kids made me more passionate about enjoying the most beautiful parts of life. It allowed me to see things in a different light. I don’t measure success by business or stuff I can’t take with me. Adjusting the meaning of the stick of success is actually a health transition psychologically that gives me peace of mind.It means valuing things that should be valued and seeing some stuff you valued before as not so important.