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Hundreds of stories.
One community.
We are inviting parents of children of any age, in the womb or fully grown, to reflect on the following question: What lights you up about your special child? Here at The Somatic Child, we hope to foster a strong community among our families. Explore the testimonies below to read what other parents have to say about raising a child with special needs. Contact us if you would like to share your story.
Margery Segal
Founder of The Somatic Child
I became a parent when I was lying on my back in rehearsal nauseated beyond belief wondering if I’d be able to continue directing the show I was directing. I had a conversation with my child in my belly, I said can we do this? I got a clear answer to go ahead.
While pregnant, I would wake every day and go out on the porch and show him the doves, plants, cats and birds and say this is what’s waiting for you. Later when I was performing with a jazz band every time the drummer played, my son would jump. I could barely focus, there was so much kicking and movement in my belly. My son was born with a gift for drumming, he started at two and was close to excellent by four years old. There were many struggles surrounding his birth and he went into the neonatal intensive care unit. The day we brought him home was heaven—stressful and peaceful all at the same time. He slept on our bodies so we could feel him breathing at all times and slowly we healed.
It turns out there were developmental delays. He had extremely low muscle tone and health issues. By the time he was nine months old, we drove to Massachusetts from Texas to work with an acclaimed specialist for children with neurological challenges. She was the originator of her work called Body-Mind Centering which looks at all systems of the body when working to heal someone. This was a life-changing moment and she taught me about all the possibilities that were available to him in his life.
We moved to a new state when he was five and after settling in, the public school who administered special learning services informed us they wouldn’t give us any services for him for the first time in the state’s history. Suddenly I was grounded as the driver of my son to his myriad of appointments. It was at this juncture I started to have a breakdown every time I got in a car—I could not feel the ground when I would try to drive the car. I felt like I had lost my identity as “the driver” and I had lost my soul as human being.
The reason I wanted to start The Somatic Child was because of that feeling. It can happen if you don’t have anyone telling you that it’s okay to be a human being, and have something left for yourself—to have something that lights you up, that brings you joy, that gives meaning to who you are, no matter what happens with your child. And to create a community where parents can express their emotions, thoughts, love, disappointment, rage and dreams.
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Sarah Marsh
Max’s Mother
When we bring a child into the world, none of us know who they’re going to be. The expectation is that you’re going to have a child that follows a trajectory you understand. I never thought I’d raise a child who experiences the world so differently. That said, my journey as a parent has been liberating in so many wonderful ways.
My name is Sarah Marsh, and my son Max has a genetic difference. Socially, there are certain aspects of interpersonal interactions that overwhelm him, including loud noises and the sound of distressed children.
Developmentally, he did not learn to walk until he was two years old. He was slow to interact with the world outside of his own body, and he continues to be tentative in engaging with his surroundings.
Nonetheless, Max has been incredibly responsive to the environment Margery has created for our family. We live in this label-less place, wherein Max is not a diagnosis, but an individual who interprets the world in a different way. And Max adores Margery; he looks forward to their time spent together. He even says, ‘Mama, I wanna be alone with Margery now!’ He’s very clear with me that he wants his personal space with her, which is amazing and interesting to see.
I’ve also had one-on-one time with Margery. As a mother, it can be anxiety-inducing to learn that your child has unanticipated differences. And Margery has provided me a place where I feel heard and understood. She knows the challenges that I face, and she has shifted my expectations of parenthood for the better. And that has been a huge gift to me.
If you are a parent of a special needs child—take a deep breath! You can do this. Educate your friends and your family about what your child is struggling with, and take time to see your child grow. Find your people; find your Margery’s. Learn to trust your gut, for you know your child best.
Being a parent of a special needs child brings its own set of challenges. But it also expands your worldview in a tremendous way. For me, I’ve become a more empathetic person. I’ve learned that people all around me are experiencing things that I know nothing about. Most importantly, I focus far less on the future and more on the present moment. I’ve embraced the unexpected—and that’s an incredibly freeing mindset to have.
Share Your Story
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The Parent Story Project
We’re starting off with The Parent Story Project, we feel that the stories of parents of children with challenges often goes unspoken— So we wanted to invite you to speak. The Isolation and lack of creative expression can be profound. We have found it is therapeutic to make sense of one’s journey as a parent and as a human being navigating through the extraordinary circumstances of parenting your unique child .
We also think it’s fun to share with each other and with other parents—OK I know all of it won’t be fun because some of it’s been hard but there’s something about being witnessed by others who understand you that can be tremendously healing and that’s our goal with this project .
Step 1
The first invitation is to answer the question “What lights you up about your child?” and send it to us.
Step 2
Our second invitation is to write a one-page version of your parenting story.
Step 3
We’ll ask your permission to share your story on our website, so others can be inspired and learn and we can hear and witness each others’ stories.
Step 4
Our 4th invitation is to gather groups of parents together to grow the writing of their stories in The Parent Passage, a Story Development Workshop for parents of children with special needs, autism, learning differences, medical challenges & neuro-diversity.
(Click here to learn more.)
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