By Julie and Mark Martindale, Parents, Anoka, MN Reprinted with permission from Deafblind Perspectives,
Volume 11, Issue 1, Fall 2003
Abstract: Parents share the lessons they have learned through their children who are growing from the joys and difficulties they experience in having a sibling who is deafblind.
Keywords: Family Wisdom, deafblindness, visual impairments, sibling support, parent perspective
It was a Sunday morning, and we were frantically rounding up our four young children at church, when a few words from an acquaintance stopped us in our tracks. It was Christmas time, and all the children were supposed to sing in the school program that evening. Our son, who uses a wheelchair and is DeafBlind, was going to be part of the program with all the other children. As this person looked down at Aaron sitting in his chair, she asked, “Is he going to be in the program? He can’t sing.” Many emotions stirred in us immediately—anger and hurt at the insensitivity of this individual and even embarrassment and self-doubt. Maybe we should not have put him in the musical.
It was our son Tyler who answered the woman simply and eloquently as we stood there still stumbling for the words to say. Tyler said with confidence and pride, “My brother can sing. He sings with his eyes.” If some day you meet our son Aaron, you will know what Tyler is talking about—because Aaron does sing with his eyes and he says more with one smile than most of us can say with a thousand words.
But it was Tyler who amazed us the most with his answer. It reflected acceptance, insight, and maturity beyond his years. This was a turning point for us. We know that in all the worrying we had done over our typically developing children, we had lost sight of the benefits that come from having a sibling with special needs. It is not an easy road for siblings, but along the way they learn skills and form attitudes that can help them throughout life. Their experiences are not really that different from ours as parents. They didn’t choose this road for themselves, and through the tough times they learn that life is not to be taken for granted. And with our help, they can emerge as stronger, more sensitive, and self-assured human beings, just like us as parents.
We’ve spent a lot of time worrying about the effects of the extra attention that our special needs children get. How could we possibly explain to a two year old why the physical therapist was coming to play with his baby sister, but not with him? She is “special,” but so is he. Was this going to make him feel insecure? Would he feel too much pressure to be the one to succeed because his siblings wouldn’t be able to do all that he was able to accomplish? Would he grow up resentful or angry?
In the book by Donald J. Meyer, et al., Sibshops: Workshops for Siblings of Children with Special Needs (Paul H. Brookes Publishing Co., 1994), the authors list some of the most common concerns that are associated with being a sibling of a child with special needs and also some of the many positive opportunities for growth that siblings have. Here are some examples:
isolation or loss
pressure to achieve
self-concept & social competence
insight and tolerance
In spite of the difficulties, there are great joys. The siblings see all of it, sometimes more than we do. We have a lot to learn from our typical kids and we are learning to listen to them more and more. We have decided not to worry so much (OK, we know it is easier said than done) about the negative possibilities that can affect our kids. We’re learning to worry less and experience life more. As we seek to enjoy the little things in life and to learn from the difficult times that come our way, just maybe our attitude will shape the attitudes of our children. But most likely, it will be our children teaching us.