I Do Not Grieve For My Son’s Disability
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I Do Not Grieve For My Son’s Disability

Gabrielle Kaplan-Mayer directs Jewish Learning Venture’s Whole Community Inclusion which fosters inclusion of people with disabilities through the Philadelphia Jewish community. She loves writing/editing for “The New Normal” and for WHYY’s newsworks. Her latest book The Little Gate Crasher is a memoir of her Great-Uncle Mace Bugen, a self-made millionaire and celebrity selfie-artist who was 43 inches tall and was chosen for this year’s Jewish Disability Awareness & Inclusion Month Book Selections. She’s recently shared an ELI Talk on Standing With Families Raising Kids With Disabilities and has released a journal designed for special needs parents.

Editor's Note: This blog originally appeared on newsworks.

It's been over a decade since my son George, 13, was diagnosed with autism, which means that it's been that long that I've been a member of a certain tribe: that of special needs parents.

Through the ups and downs of the challenges that my husband and I have faced coming to understand how best to meet our son's needs, I've met, shared with, laughed and cried with so many resilient, insightful, spiritual, funny parents who are doing what I'm doing—extreme parenting with no road map, taking life not one day, but one hour and sometimes one minute at a time.

Despite the intensity of the experience, many, though certainly not all, of us live with a sense of purpose and even a sense of peace.

It's been said that to reach acceptance of raising a child with differences, who may not match the daydreams you had long before ever bringing that child into the world or into your family, one must go through a grieving process. You need to mourn the images of that child you dreamed of in order to make room to embrace the child who's right there, at your side, offering you his heart and soul.

The word grief bothers me; it always has. It doesn't match up with the process that I went through in making peace with the challenges in my parenting journey.

When George was diagnosed, I was consumed with an unbending fear of autism that gnawed at the recesses of my mind as I drove to therapy appointments and tried to calm his meltdowns. It woke me with nightmares so vivid I couldn't tell days from nights. In those first months, caffeine and online forums got me through until I could isolate what the fear really was: that I would never learn how to communicate with my child.

Fortunately, my husband and I moved forward together and started using a cognitive behavioral therapy called Relational-Development Intervention (RDI) that helps parents repair and re-establish communication and connection with children whose neuropathways do not intuit social understanding.

We spent hours playing simple games together, practicing walking hand in hand, singing songs back and forth and even cooking together (I wrote a cookbook guide for other parents based on our therapeutic cooking with George). I not only saw my son emerge as an autonomous human being who had the desire to communicate despite not being able to talk, but I also experienced new abilities come to life in me—especially the practice of just being in silence with my son, allowing us to connect intuitively, feeling the beauty of his presence.

With each passing year since my son's diagnosis I have let go of many things: that image of the perfect family, expectations of myself as a perfect mother. I've let go of any toxic people who drained my energy or took time away from my children, my relationship and my self-care.

I pray and visualize a lot now. In the early days, my prayers were sessions of full-on weeping on the living room floor when I had finally gotten my kids off to preschool and had a couple of hours of solitude—my tears mixing with the gluten-free cheerios I had meant to sweep up. I felt a divine presence there with me in the middle of my messiest, rawest moments, offering comfort and that presence remains.

I suppose that process sounds a lot like grieving and maybe it was.

The word that I would prefer to use instead of grieving is "deepening." Facing the challenges of raising a child with autism, which have included battles with our school district; the search for the right therapies; supplements and medications; the rudeness and unkindness of strangers who stare at my son's differences in public settings; the desire to create a somewhat regular social life for our family and of course all the "autism stuff," like erratic sleep and sometime uncontrollable emotions…these things have all taken me towards a deepening sense of self, of my strengths, my faith, my hope, my ability to reach out and ask for help, my allowing myself to be the mom who can't cover up and pretend that life is perfect.

What I have had the opportunity to discover among the other folks in this special needs tribe are many kindred spirits, who have discovered their own reservoirs of compassion and kindness. I offer the word "deepening" for us to use in our process of evolving as parents, as people, as givers of love.

The challenges of raising a child with autism are real and ongoing—and yet, the process of deepening has allowed to live a life of more grace and ease than I experienced before becoming the mom I am. For that, I am thankful.

Gabrielle Kaplan-Mayer directs Jewish Learning Venture's Whole Community Inclusion and loves writing/editing for "The New Normal" and for WHYY’s newsworks. Her latest book The Little Gate Crasher is a memoir of her Great-Uncle Mace Bugen, a self-made millionaire and celebrity selfie-artist who was 43 inches tall.

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