Dr. Ellenmorris Tiegerman is the Founder and Executive Director of the School for Language and Communication Development (SLCD) in Glen Cove and Professor Emeritus at the Derner Institute for Advanced Psychology Studies at Adelphi University. She can be reached at 516-609-2000 and www.slcd.org.
There are many self-help books dealing with parents who are overly involved in their children’s lives as well as companion texts which describe the difficulties faced by children who grow up with overly indulgent and/or involved parents. This is not the case for parents who have children with disabilities; their issue is that there is no mechanism and/or support system for their children to survive even as adults without them.
The shocking reality of having a child with a disability is that life will never be the same. All of the expectations that parents have for their children “fly out the window.” The assumptions that children with disabilities will graduate from high school, attend college, become professionals, get married and have children are all tenuous “dreams” which are difficult to achieve but gifts nonetheless. Parents of children with disabilities do not have a choice. They must advocate and remain involved in their children’s lives at all stages of development. It is true that in the United States, we are most fortunate to have a comprehensive special education system which provides educational and clinical supports for children with disabilities. But there is a limit to what the system or any system for that matter can provide to children and families, particularly during difficult economic times.
At every stage of development, parents must educate themselves about the services that can be provided by each system to ensure that their children receive those services. The difficulty for most parents is that there are usually many different agencies which are responsible for different stages of their child’s development. So, for example, there is an early intervention system, a preschool special education system which is followed by a school-age system from elementary through high school. Children with disabilities are entitled to educational services until age 21. So the initial governmental agency might be the Department of Health which is in charge of early intervention services followed by the State Education Department which is in charge of children who are 3 to 21 years of age. And finally, the Office of Mental Retardation and Developmental Disabilities which is responsible for adult services. Each agency has its own rules, regulations and procedures which parents must learn about in order to advocate effectively for their children’s needs. Can you imagine how difficult it is for a parent who does not speak English or has some kind of disability herself? Certainly, there are advocacy groups for parents such as: Advocates for Children, New York Legal Services, The Legal Aide Society and private attorneys who specialize in disability law, but all of this requires time, attention and commitment.
Even when children with disabilities graduate from high school and try to enter the mainstream of society, parents must be involved. Some young adults cannot live independently. Where do they go? Parents need to be involved with various not-for- profit and charitable organizations as well as state agencies to locate either a group home or a residential placement that might be appropriate. But does this mean that parents get a break? Absolutely not. Even when their children are adults, parents must oversee and monitor services and benefits which their adult “children” are entitled to. I have worked with parents whose children are 30 years old, and they are as involved as ever in their children’s lives and decision making. For most of us, we experience the regrets and pains of letting our children grow up and leave us for adult relationships and careers. For parents of adult children with disabilities, the pain relates to the realization that adults with disabilities will continue to require the direct involvement of their parents and siblings during the entire course of their lives. These parents walk a different path with their children, face different social obstacles but rarely complain about how hard life is. These parents learn to find a “blessing” despite the daily difficulties. They have a lot to teach the rest of us!
