Not too long ago, I ran across a thought-provoking post by the mother of three children, two with Down Syndrome.
Life with Bubba, Chicky and Nika
At her delightful blog, Life with Bubba, Chicky and Nika, Bethany Balsis shared a recent quandary. She wondered when to tell her young son about his little twin sisters’ condition. Good quandary, huh?
Dr. Brian Skotko
She also shared eight tips she’d heard at a siblings workshop facilitated by Dr. Brian Skotko. Dr. Skotko is a clinical fellow in genetics at Children’s Hospital Boston, Massachusetts General Hospital, Brigham & Women’s Hospital, and Dana Farber Cancer Institute. He’s dedicated his professional energies toward children with cognitive and development disabilities.
You can read his eight tips at Bethany’s Blog where you will also find some delightful pictures of her family. The photographer was marvelous!
How About You?
If you’re struggling with this issue right now, leave a comment. Or if you’ve dealt with it in your own family, please share your solution. Or if you have tips to add to Dr. Skotko’s list, leave them, too.
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Nancy,
Thank you for sharing your experience and wisdom. What you said about explaining it at their level is so true. And only as much as they need to know at the time.
Jolene
I explained my daughter’s inability to do certain things due to cerebral palsy when the questions arose. Since they were young, I left it as her brain was damaged. That was interpreted and told to others that her brain was broken. I didn’t correct them because I is true and more on a child’s level.
I still get questions after nine years. Today question was whether Lillian would ever get married. My answer was probably not and that was it. I have had questions from her twin about Lillian dying at a time when she was very sickly. You know, I don’t know the answer to that, and my husband and I were worried. But my answer to her twin was that I Lillian may not live as long as the rest of us and Mommy and Daddy were doing our best to help Lillian, however, only God knows the number of our days.
I agree with all the suggestions the doctor has. I had a parent with a disability and often felt I was left to be a caregiver so I have been very conscious not to put my children in the position with their sibling.
I also try to take advantage of outings with other families with disabled children and sibling supports whenever possible.