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What To Say To The Parent Of A Child With A Disability

What To Say To The Parent Of A Child With A Disability

Yesterday in this space, I discussed three surefire ways to shut down a conversation with the parent of a child who has a disability. Of course, talking about disability can be one of the trickiest, most awkward-moment-producing topics around. Differences raise fear and anxiety for all of us and that limits the chances for meaningful dialogue. But I hope that with increased disability awareness education, like my post of yesterday and this one, we can create more productive conversations. Try any one or all of these three topics!

Tell me about how this experience has changed you/transformed your spirituality/view of the world:

Most of the parents I’ve meet who are raising a child with special needs have incredible stories to tell. Our perspectives on humanity, on caring for the most vulnerable, have opened us to deep understandings and maybe even some wisdom. For the last five years, I have met monthly with a spiritual direction group made up of other parents who have a child with some kind of difference. We sit together and listen to each other’s stories and share about the moments of struggle, joy and feeling God’s presence with us that have happened over the last month. Asking to hear about my story and listening deeply would be an incredible gift to me.

Tell me about what supports you might need and how I could help.

I can only parent my child with supports in place. I am blessed to have an amazing husband who is a partner with me and lots of encouragement from family and friends. But much of my extended family lives hours away and I can always use extra help. Asking parents who are raising a child with special needs how you might help them opens possibilities. It is especially important for our clergy, educators and synagogue professionals to start these conversations with parents,

Tell me about how you get through the challenges.

The amazing thing about the community of parents I know whom are raising kids with special needs is our resilience. We may get burnt out from time to time and we all certainly need respite, but we don’t give up. We are not “why” people but “how” people. Since every human being experiences challenges and obstacles at some point, in some way, in our lives, maybe our community has something to teach you about finding your own strength.

My daughter June, who is 8, has taught me a lot about getting to know someone whose life is completely different from my own. Ten hours a week, a kind man named Jinadu who was born in Nigeria comes to our home to work therapeutically with my son. June is the one who got me started in the “tell me about “ frame of mind. “Tell me about the food you eat in Nigeria…tell me about what the houses look like…what games the kids play…” From listening to her dialogue with Jinadu, I have learned so much about the world he grew up in and have gained the courage to try some “tell mes” of my own. Our connections expand with understanding the more we can listen to the different narratives that construct our similar at core lives.

Gabrielle Kaplan-Mayer coordinates Celebrations! at Mishkan Shalom; a curriculum is available to bring the program to your synagogue. She also serves as Special Needs Resources Director at Jewish Learning Venture and in her spare time teaches about cooking for kids of all abilities.

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