I spent this past weekend in Brooklyn, New York. It was an exciting time. I was invited to conduct a presentation series under the theme: “Different Perspective – A Peek Into the World of Autism”. I prepared for the weekend as I would have prepared for any other academic or professional conference (powerpoints, interactive activities, etc), but this conference was different. It changed my life. I’m a clinician. It’s what I do. It is part of my job to say to parents “Your child has autism”. I spend only a few hours with these children and then I can shut it off and go home. But parents? They live with their children’s screams, pain, poor eating and insomnia, their temper tantrums and the uncontrollable anger that emerges from their frustration with the complexity of life. It is the parents who live with a daily sense of helplessness and guilt.
This past weekend, I listened to cries about the looks of scorn in churches and in the park when people don’t understand when a child runs away or is so overwhelmed that he hits and bites and screams uncontrollably. As each parent described their journey of pain, confusion, anger and acceptance, I couldn’t help but feel a sense of inadequacy for the task I was given.
On that first night of the conference, before I took to the podium, I listened to their stories, and I remember feeling a deep sense of unworthiness to even open my mouth as the invited ‘autism expert’. It quickly became clear to me that these parents are the REAL experts. They are soldiers on a never ending battlefield.
One lady described her experience as “grieving for the child [she had] not lost”. Another parent shared that having a child with a severe disability is like having a miscarriage…except it happens every day. The intensity of the emotions in the room was overwhelming. It is a pain to which those of us who live ‘regular’ lives absolutely cannot relate. There were cries to the audience for compassion, acceptance and deep, DEEP love….my heart grew heavy. I felt terrible and I realized that my job (simply by nature of being the bearer of bad news) makes me one of those people who breaks a parent’s heart.
These stories changed me. I want to do more. I want my work to be filled with AHAVA (the Hebrew word for a self-sacrificing love that nurtures, nourishes, sustains and protects). I want to be the psychologist who sees the heart of not just a child, my client, but of his entire family. I want to find ways to breathe new hope into hearts that are stronger than anyone could ever imagine. I want say to every parent of a child with autism and other disabilities everywhere…I’m here for you. Teach me how to support you. Share with me your needs, and let’s journey together to inspire hope filled living for OUR children. Let’s never ever give up!