My Son, My Mindfulness

My Son, My Mindfulness

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.

The experience of parenting of a child who is affected by the more severe end of the autism spectrum reminds me daily that there are numerous things that I can’t control. My first impulse when my son was diagnosed was to try and “fix” as many of the symptoms of his disability as I could.

But I realized that no matter how hard I — or his amazing educators and therapists — worked, there were elements of his growth that would only move forward at a snail’s pace. At first overwhelmed and frustrated by my inability to make change happen, I started focusing instead on “being” with my child and paying greater attention to my feelings, whether they were of frustration or joy or something somewhere in between. Parenting my son has been a catalyst for greater mindfulness, which has lead me to be a much happier person by learning how to:

Become aware of my feelings: One of the ways that I have found peace while experiencing the challenges my son faces is to simply become better aware of what I’m feeling. If I feel a stranger’s stare, I can acknowledge to myself This is uncomfortable and let it go. If my son is going through a meltdown, I can feel my anger rise and my body tense and tell my self to breathe. Being better in touch with my feelings and naming them without judgment has increased my sense of overall well-being and helped me to be more present in all of my relationships.
• Focus on ability: It would be easy to get discouraged if I focused on what my son couldn’t yet do, so instead I notice all of the strides he is constantly making, despite immense challenges. My son’s ability to keep trying things that are hard for him, with a generally cheerful demeanor, is incredibly humbling.
Let go of expectations, focus on being present: Being a parent comes with expectations for the relationship that we hope to have with our child… we all have them. In the eight years that we have known about George’s differences, I have had to unpack my expectations and learn a new way to relate to my child. It is actually incredibly liberating to not place expectations on a child. With George, I know that he will never be able to take care of me when I am old or sick; I know that he may never spontaneously tell me that he loves me. But by slowing down and learning to be present with him just as he is, I have learned to receive his enormous love for me through his smiles and hugs and to connect deeply with him without talking at all. This skill of being present now translates to my other relationships, deepening my friendships, marriage and my relationship with my typically-developing daughter.
Practicing compassion: Parenting George gives me a daily opportunity to take my values out of a theoretical place and to actually live them. When George is struggling, I need to bring forward my ability to be patient and kind. It’s not always easy and it doesn’t always happen, but I’m getting better at hitting it more often.

This learning doesn’t mean that my parenting journey is easy or free of challenge. Among the many things that I still can’t control right now are:

The pace of George’s cognitive growth: Despite placement in an excellent school and years of a home-based program, my son’s acquisition of academic skills goes at his pace. He may have months where it seems like no new skills are acquired and we even see regression—and then suddenly he bursts forward with a rush of new skills. This is just the way that he learns.
My son’s tendency to get overwhelmed in loud, crowded places: My son has been in occupational therapy since age three and can better tolerate more stimulation, but he still struggles with filtering sound in loud, crowded places.
His inability to explain frustrations: My son is minimally verbal, but is learning to read and type. It is exciting to see him select choices and answer questions on his keyboard, but he can’t yet communicate what is happening to him when he becomes highly frustrated.
Stares from strangers: Walking through the mall holding an eleven-year-old’s hand inspires stares from strangers. I know it’s natural to look at what is unusual; I just wish more people would consciously think to add a smile when staring.

That’s the list that I can think of right now — on any given day, I’m sure that I could add another dozen items that I have no control over. But I think it’s more productive to focus on all of the power that I have to live a life full of meaning and connection instead.

Because of the ways that I’ve been able to grow through parenting a child with different abilities, I am a much calmer, loving and much happier person than I was before my son was born. While I know that others may look at my family with pity or fear, I embrace the opportunity to discover meaning in my life, family and spiritual growth. In knowing many families who are parenting children with differences, I have discovered that this sense of happiness is not uncommon and I can imagine many ways that we families with differences can share our learning with others who haven’t walked our path.

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

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