A Parent's Greatest Fear

When asked “what is your greatest fear?” the response was almost unanimous – what will happen to my child when I am gone?

I facilitate a small support group for parents of exceptional children (PECs) in my local area. Through candid conversations, men and women have shared that the birth of a child with a disability can have a major impact on marriage, siblings, family relationships, and attendance at social events and outings. Many parents shared feelings of isolation they felt trying to avoid the looks and glares from loved ones and strangers unfamiliar with disabilities. Their absence from major events left them feeling estranged from family and friends. Some shared of divorce and problems with other children acting out; while others asked questions of “what to do” and “where to go” from those at different stages in their journeys. Yet, in all of this, there was a selflessness that portrayed love and dedication to giving their child the best life possible.

When asked “what is your greatest fear?” the response was almost unanimous – what will happen to my child when I am gone? The challenge for many parents of exceptional children is that their life is so much in the now. School, work, home…the list goes on. It is also difficult to think of the future when the dreams you had during pregnancy and infancy are detoured by disability. However, this fear must be addressed in order to provide our children with the best life possible.

One immediate and cost-free way is through your child’s IEP. By law, transition services must be included in the IEP by the time a student is 16 years of age. However, many schools begin transition services in middle school. At this juncture, life after high school is discussed and mapped out. In middle school, the focus will be on courses in high school and activities that will introduce them to possible careers. In high school, the plan becomes even more specific – outlining goals and objectives that will support them with higher education, life skills, employment and training, navigating the community, and independent living. Certain transition services are provided by outside agencies or programs sponsored by your state. Some schools bring these agencies in – free to the student – to work in small groups during school hours.

Parent participation in IEP meetings is crucial to student success and services provided to your child. As a part of the team, you have a say in the goals and desired outcomes for your student. It is also a great idea to have your student attend the IEP meeting when discussing transition. Their input ensures that the goals and objectives reflect your student’s wants and needs.

You can have dreams for your child, dreams that can come true. The key is early planning and involvement in your child’s IEP meetings.

How are you addressing your fears? Comment below