Dr. Tiegerman Speaks

Most people think that parents who have a child with a disability deal with the diagnosis and then just move on with life.  This cannot be further from the truth.  When you have a child with a disability, time stops and life’s clock gets reset to a different time dimension.  Many things are new, unanticipated, and/or disconcerting while the future becomes an unknown.  Think about all of the activities that you do with your children outside your home. 

            If you decide that you want to take your child to a playground, you look for the nearest park and off you go.  For the parent of a child with a disability, this becomes a major field operation.  Is the park fenced in?  Children with disabilities may run or wander off.  There are many cases where children with autism spectrum disorders get injured in car accidents because they do not realize that they are crossing a street.  What kind of equipment does the park have?  Children with disabilities may not be aware of swings, slides, and water features and as a result get hurt and/or bump into other children.  Children with disabilities need to be directly supervised in playgrounds and parks.  Parents often complain that they cannot take their eyes off their children for a second. 

            If parks present problems, what about a nice family dinner at a local restaurant?  This too can present multiple complexities for parents of children with disabilities and other restaurant goers who happen to be sitting around the family.  It is difficult for children with autism spectrum disorders to sit quietly and wait until food has been served.  Sometimes parents will order for the child before everyone else but temper tantrums may occur anyway.  Parents of children with disabilities are often embarrassed by their child’s behavior and feel very uncomfortable when other people turn around and stare.  So, what happens over time? 

            There is a very sad reality to the social embarrassment and discomfort that often occurs in public settings.  Parents of children with disabilities unfortunately decide not to go to parks, restaurants, movie theaters, libraries, and museums because they cannot either anticipate or control their child’s behavior.  Over time, it just becomes easier to deal with the child at home or in smaller places where the child is familiar with the context.  The broad range of options and opportunities for typical families does not exist for families of children with disabilities.  Parents and siblings may feel that their activities are limited by a child that they cannot control.  Although they need to find ways of getting out and spending time by themselves, with each other and with friends, this is difficult to do.  They are certainly deprived of many social options that the rest of us take for granted.  For most of us, we make a decision about going out and we just do it.  For families of children with disabilities, the process is complicated by all of the arrangements that have to be made and safety factors that must be considered. 

When you see children with disabilities, try to understand how difficult it is for their parents and siblings.  Keep in mind that having a child with a disability most often is not a choice.  As a society, we need to think about ways to include families of children with disabilities in all of the daily activities and events which we usually do not “analyze” for safety reasons.  We talk about children with disabilities and the importance of including them in public school programs.  But let us not forget that those children go home to families and these families need support as well.  We need to be more aware of how difficult it is for families of children with disabilities to run “wildly” on a beach or sit “quietly” together in a movie theater.

Ellenmorris Tiegerman, Ph.D.

Founder and Executive Director

School for Language and

Communication Development

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!