Clinical Director, Cindy N. Ariel, Ph.D.
Special Family Resources, Robert A. Naseef, Ph.D.
Q and A: Siblings
Question 1: We have two typically developing children and one child with
moderate to severe speech impairment and developmental delays across the board.
Blood and urine tests have ruled out genetics and an EEG came back normal.
Anyway, my oldest child periodically asks "Is Christina going to be OK?" and
makes statements like "Adam's like me, I can tell already he won't need to go to
a "special" toddler school." I know she discusses Christina issues with all of
her friends parents, because when I go to pick her up, they all ask me
questions! I don't mind the questions or comments. I worry these issues are too
heavy for a six year old. How can I ease her mind, or reassure her that everyone
will be OK. Sometimes she reassures me that I am doing a great job helping
Christina. (We have been going thru a difficult IEP process recently) Bottom
line, I don't want her to feel like I do. I feel helpless with no way of
predicting the future.
Response: If any of us were six and had a younger sister like Christina,
we would be observing and comparing her to some extent with other children,
especially a typically developing brother. We would see and feel and hear our
parents’ grief and worry over our sister. We would quite naturally most likely
ask a question like “Is Christina going to be OK?” We might even talk to other
adults in our lives about what we were thinking.
As a general rule of thumb, if a child is old enough to have a question. She is
old enough to get an answer on her level. There was a study many years ago that
looked at the issues faced by siblings of children with mental disabilities. One
of the things that the siblings reported was that their parents told them less
about their special brother or sister than they did about sex. Times may have
changed a bit, but the point is that parents were uncomfortable talking to them
about these issues--things they wanted and needed to know more about.
In my own life, at times it seems like only yesterday that my daughter
Antoinette was a curious four-year-old who wanted to play with her big brother,
Tariq, who was six and nonverbal as a result of autism. She asked a million
questions, and she wished and hoped that she could play with him like a “normal”
sibling, and she tried over and over to do just that. He didn’t respond to her
in the ways she wanted and expected. It was painful for me to watch and not know
what the future would hold. My heart just ached--and as I learned later--it
takes time to heal a broken heart.
One of the worst things about having a child with the kind of special needs you
describe is precisely that helpless feeling you describe in you, Mary. Time
stops. We face an uncertain future for our child, for ourselves, and for our
family. How can you reassure he that everyone will be OK? It depends on what you
mean by OK. Some dreams that you have held for Christina will be deferred as you
watch and help her develop to the best of her innate capacity. Some dreams will
be reshaped in that process into the priceless gems of her unique intrinsic
beauty. Some dreams will be lost forever.
Fortunately there are many books written for children who have special siblings.
In my book, “Special Children, Challenged Parents,” I have included a
bibliography of many of these choices, and I have discussed the issues that
parents face in explaining disability to their children. Currently I am reading
a book for grown-ups called “Special Siblings: Growing Up With Someone with a
Disability” by Mary McHugh. Although she grew up in the fifties, the stories of
her life and those she interviewed for her book reach out and touch our hearts.
Finally, concerning your wish to spare your daughter of your helplessness, I
would strongly recommend that find support for yourself in a parent group where
others are wrestling with and handling these difficult issues. A group
experience can empower you and you can empower your “typical” children. Children
who grow up with a special sibling have many benefits as well as challenges. For
example, they are generally sensitive and tolerant of others. They can learn to
accept others as they are--not as they wish them to be. My son, Tariq, taught me
these lessons too, as he also taught his sisters. We did not volunteer to learn
them--but he has made the rest of us better people.
