For many parents, the fears related to their children concern the points of separation as they get older and become independent. Parents of children with disabilities on the other hand are faced with the fear that their children may never separate and never lead completely independent lives. The stages of development which are bitter sweet because they reference growth and accomplishment such as Communion, Bar Mitzvoh, graduation, dating and marriage are painful reminders to parents of children with disabilities. For many parents, having a child with a disability presents an emotional crisis resulting in stages of grief from denial to depression to ultimate acceptance. To watch everyone else’s children proceed through typical childhood stages while your child appears “frozen in time” brings repeated pangs of embarrassment, frustration and sometimes shame.
As parents grow older and their children start their own families, there is an incredible joy to becoming a grandparent. It is wonderful to watch your adult child face agonizing management problems with a tantrumous three-year-old just as you did. It is extraordinary when your grown children finally admit how being a parent is the hardest job in the world. There is tremendous satisfaction when your adult child approaches you with humility and gratitude for all of the things both physical and spiritual that you struggled to do during the exhausting years from infancy through adolescence.
Many of these experiences, discussions and relationship changes are missed by parents who have children with special needs. Within these families there is an ongoing effort to maintain a balance between parents and between parents and siblings since the child with a disability is often the focal point. The graduations, religious ceremonies, dating experiences, college acceptances, marriages and grandchildren are often dreams that seem so far off that there is often little expectation that they will ever happen. Many times they do. Sometimes they do not. So the lifecycle sequences within these families occur along a very different path.
It may be difficult to think about when children are young, but parents age and eventually retire to different jobs, lifestyles, social networks and home environments. For many parents of children with disabilities, their release from primary child rearing responsibilities does not take place quickly or easily. As children with disabilities grow older and become adults, there is a concern about finding them jobs and homes where they can live with or without professional supervision. Many parents in their 60’s and 70’s are still directly involved in monitoring their adult children’s services and medical care. Parents remain to be primary guardians and are ultimately faced with the frightening and overwhelming task of finding someone who will be responsible for their adult children when they pass on. One parent indicated that even in death there is no “peace.” She said, “Even after all of these years, I have to be concerned that someone is going to take care of him and not abuse him.”
These parents create a Special Needs Trust (SNT) and work closely with attorneys who specialize in disability care and law. It becomes critical to find someone, hopefully within the family, perhaps a sibling or cousin, who will assume the guardianship of the adult with a disability. For many parents who have taken care of their adult children, the identification of a “trusted” family member, friend or colleague is emotionally difficult. Relinquishing control obviously does not ensure that a Trustee will always have the best interest of the adult with a disability at heart. Usually the Trustee is given a great deal of discretion to determine how financial funds are going to be distributed on behalf of the individual with a disability. When siblings or family members are not interested in becoming a Trustee, parents must then identify an organization that might be able to take a personal interest in the welfare of the adult with a disability. This is a complicated process which requires a great deal of time and study, and obviously parents need to speak to legal experts and advocacy organizations to make sure that the Trust is established appropriately. Since there is a great deal of legal work and financial planning involved, it is in the best interest of families to begin this process as early as possible so that at the time of death, the SNT will be accessible and available without an interruption in life care services for the adult with a disability. Although parents of young children rarely focus on end-of-life issues, this becomes a significant source of anxiety over a lifetime for parents of children with disabilities.