Milt Stoltzfus is a long-time member of ADN's Board of Directors and on staff at Friendship Community in Ephrata, Pennsylvania.
As I have reflected on my life and its relationship to disability, I realize that I have been given valuable experiences that have shaped who I am, what I do, and who I know. These experiences have offered me insights into a world that many do not know exists.
As a youngster, I could not comprehend how having two family members with serious disabilities changed the lives of my parents and me. My young life was shaped by the fact that I had two sisters who I never knew as being different. They were my playmates and I had no clue that our family was not “normal.”
However as the years passed by, it became apparent to me that we were not like other families. As my sisters grew older, our situation changed. Where we lived, where I went to school, and what my time was used for were all in some ways guided by my sisters’ needs.
Reflections as an adult
As an adult, I can now look back and identify the emotions and processes that I went through. As a staff member of a Christian ministry that provides residential services to persons with developmental disabilities, I am called upon to lead seminars or talk to families about sibling relationships. The following is a summary of some of the hints that I share with parents as they experience a variety of dynamics within the family system that includes children with disabilities, especially as they relate to the non-disabled brother or sister.
Show that all family members are important. Your openness about your family situation will also enable your other children to be open.
Participate in normal family events. Observe differences in other families to help all your children understand that all families experience differences.
Allow for your child’s feelings
Identify with your child’s feelings. Be open about your own feelings. Encourage participation in sibling support groups as appropriate.
Give attention to special times
Have “dates” with kids. Plan time for one-on-one interaction. Make sure that you can provide examples of when you have spent that extra time with them time for their “resentment” times.
Don’t force high expectations. Be careful not to place expectations about future care of the child with a disability. This needs to be the choice of the sibling. It may seem that the interest is not there; however, this takes time. Allow for the siblings to sort through their own feelings and processes.
Be careful to not place your hopes and dreams of a “child lost” on the sibling. It can be easy to overwhelm the sibling with the impression that your sanity depends on them. This is too much for anyone to bear. Your dreams for your children, disabled or non-disabled are important. However, do not let those dreams get in the way of who the child is.
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Read "Living with Nathan," another story by someone who has a sibling with a developmental disability.