Challenge Of Special Needs Siblings
When I heard the news that Caila had Down’s syndrome I was naturally shocked. I had so many emotions, thoughts and fear raging through me. I was worried about how this would impact the lives of my other children.
Five years on the whole experience of parenting a special needs child is not nearly as scary and brings much more joy than concern. However I know that for Meron and Temira the challenge of having a special needs sibling is still evolving. They adore Caily and dote on her. For the most part their relationship is just that of typical siblings.
There are moments when I see their sister from their view point. Recently, Ohel Bais Ezra, an organization that provides support to special needs people and their families, produced a video entitled, “SIBLINGS, Unspoken Challenges; Unrelenting Love”. The video documents various aspects and challenges for the siblings of people with special needs. http://www.ohelfamily.org/?q=content/2013-gala
Meron and Temira are featured in the video. Temira in the video makes a comment about how much time parents spend with a special needs child, a theme that is echoed by many of the siblings interviewed in the video. Temira’s comment is not shocking or surprising but a reminder that there is a price that typical siblings pay. I really try to carve out time for all my kids but I guess they are still aware of Caila’s need for extra attention.
I recall the time I was at shul with Caily and Temira in the playground. It was the morning after Seder and 24 hours after we arrived in South Africa from NY. Jet lag and a late night had turned Caily into an uncharacteristic grumpy kid. She was whining and another kid asked Temira what was wrong with her sister? Temira immediately answered, “She has Down’s syndrome and if you have any questions ask my mother sitting over there”. That conversation gave me insight into the perspective of a then seven- year old.
Another conversation with Temira also taught me that we worry about may not be the most important issues affecting their lives. Temira said to me about 18 months ago, “Imma, since Caily was born everything is different” I took a deep breath and prepared myself “Why is everything different?” She looked at me and said, “That’s when you started MetroImma and jdeal and you are always busy”
At the end of the day, H-Shem made the choice to give our family a special needs child but how we respond to that blessing and challenge is our choice. Despite the bumps along the road, we truly feel that having Caily in our lives have given us a richer, more rewarding life and ultimately make us better people. I really believe for her siblings too the challenges of being a special needs sibling make their lives richer, gives them additional perspectives on life and they will certainly be better people for the experience.
Originally published: December 1, 2013
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