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What I'm Taking To BlogHer 2013.. Part 1

How To Find Faith For Your Special Needs Child


It’s Saturday afternoon and lingering in the background of my day is the reminder that tomorrow is Sunday, and so my thoughts keep coming back to God.

Not my God who confuses and comforts me, not your God, whom you may believe is the only God, my mind returns to my daughter Zoe’s God, the one who made her the way she is, with her unshakable spirit yet too-shaky muscles, with her abundant full-of-love, happy heart that lives in a body that is fragile and weak. Zoe is 11 years old now, and is finally finding her faith in an unexpected place.

When you parent a special needs child, the idea of worshipping as a family may not become problematic until your school age child outgrows the preschool options available at most places of worship.

The Catholic faith has always been my foundation. As a child, I found the rituals and tradition comforting and then clung to my faith as a lonely teen. As a new wife, I helped to lead my husband back to the church. In my own way, my faith has been a constant in my own life,  so I never expected it to be a complete no-show in the life of my child with special needs.

When nothing else could quiet my questioning pain, my faith was there. It is my family, that I return to at the toughest times in my life. During my daughters’ diagnosis, I was distraught and completely distracted when I remembered my God and finally found rest and relief for my worry. For my daughter Zoe whose life is sure to be challenge, I want the same rest and relief for her too-on whatever level of meaning she can embrace.

Our story is the same of so many other families with children who have special needs. It doesn’t matter which faith you follow to worship your God, Ellen Seidman’s journey with her son Max, about finding a home for her family in the Jewish faith is almost identical to mine, and true for many more families too. There are too few programs, too few flexible, fluid options and not enough adaptions being made to teach special needs children about God, and helping families find a way to worship together.

As our family grew, worshiping in our faith became more complex. Our oldest daughter outgrew the children’s worship yet found a spiritual home in her catholic school community. As she celebrated each sacrament, I felt a weight grow heavier on my shoulders, as I could not imagine Zoe celebrating the same milestones of faith anytime soon.

I used at home instructional kits designed for children with special needs, as a way to familiarize Zoe with the basics of the church. These tools helped, but didn’t reach her in the way I wanted God to reach her, they didn’t touch the goodness of her heart.  Being without faith instruction for Zoe, left me feeling disappointed and distant from my own God.

So I waited, and I read and I researched. I learned that this is a huge dilemma for many families with special needs and in my research I visited the website for a local church, a Christian community with a growing special needs program that was exactly what I hoped for, yet wasn’t centered in my own faith.

Time passed, and this summer was Zoe invited to attend a Summer Camp/Vacation Bible School for the same Christian community I had read about online. It looked like great summer fun, with a basic Christian theme. From day one, it was an amazing experience for Zoe. There were few stares from typical kids, just smiles and hello’s. Her day’s were filled with song and games, and the unexpected friendship of a special camp buddy. Each day on the drive home, Zoe began telling me bits and pieces of what she had learned at camp, like “ Friends and family help you stand strong, Mom” 

On the drive to pick Zoe up each day, I couldn’t help but think about Zoe and how much she was learning. The significance of how these “ messages” could help her in her lifetime that lay ahead.

In bed that night, I asked her about camp that day. Her favorite part, she told me, wasn't just her new buddy she enjoyed so much..  It was the music too, that she loved. Laying next to Zoe, my thoughts drifted, fighting to stay awake I was thinking about how she loves music, when Zoe’s voice heavy with sleep interrupted “ Did you know Mom, if you worry, praying helps?”

Just a week before, I don’t think Zoe could have even explained the idea of God, and yet here she was finding her way. I lay there thinking, and while Zoe slept peacefully next to me, I found clarity.

For Zoe’s academic learning, we have a very individualized plan. She doesn’t learn like everyone else does, so we tailor a plan specific for Zoe’s needs to encourage the greatest success. So why should religion be any different? It makes sense that Zoe should learn about God in her own way.

I realized then I had spent so much time worrying about how to teach Zoe about my God, through my own faith, in my own way-I never considered trying to help Zoe find her own way, a different way.

I never considered that your God, and my God and Zoe’s God-are all the same, yet we find him through our own journey.

It is Sunday now, and I am sitting in the back of the kids worship at Zoe’s new community church. I come too, as she sits with other kids her age, to help her when she needs it. The truth is though, I need it too and the simple act of bringing Zoe to church each week, bringing her closer to God, is bringing me closer too.

I have my notebook with me. Sometimes I jot down the bible story or a reminder about an event. Today, my mind keeps coming back to this story,  how to end this story about Zoe’s  new journey to faith..

 I raise my head when I hear the teen leader ask pleadingly for a volunteer of Zoe’s small group .I missed what she said, but I see that Zoe, is the only one, who raises her hand to volunteer.

“ Zoe! You want to lead us in prayer?” the leader asks encouragingly, and with my mouth hanging open, I watch my daughter nod, then fold her hands in prayer, something she learned at summer camp four weeks ago.

“ Thank you God for bringing us here to make friends” she says, her speech affected by muscle weakness, stops and starts. Zoe understands this and and I see her lift her head questioning, a timid smile on her face as she looks around and sees what I see-accepting, smiling faces.

Stunned, I close my notebook. Realizing then, that I can’t be the one to write the end of this story. I can’t design the details about her journey to God, or even tell her story, but she can.