The other day, I sat in a café and watched as a mom walked in with two kids in tow. I didn’t notice much while sipping my coffee, but soon the family’s conversation broke my train of thought. The girl, maybe 4, was talking to the waitress about the menu. She wanted extra bacon and a muffin with no nuts because of her allergies. She knew her limitation and could express what she needed.
I was happy for the girl and her mom, and at the same time I couldn’t stop thinking about the kids like my son, Anand, who can’t have those types of conversations. And I thought about the families like mine who care for them. Walking into a café would be such a huge struggle for many of us — the anxiety around crowds and the fear of a meltdown for unknown reasons prevents us from even thinking about going out for breakfast.
We all want the world for our children, but sometimes just surviving becomes our day-to-day life.
But yet, I marvel at human nature.
When my son was born, I experienced immediate joy and sometime later came anger, frustration, sadness and denial. For many parents of children with autism or other special needs, parenting is challenging right from the start. For others, they face challenges more gradually.
We learn to figure out ways to work through things and how to support each other. We figure out how to help our kids learn to overcome barriers, choose the things they want and dream of the future.
We all want the world for our children, but sometimes just surviving becomes our day-to-day life. In our house, we celebrate small victories because they are big for us. And sometimes, the so-called “biggest” joys in life do nothing for us. We bring our kids into this world with the same hopes and dreams, but those of us with kids with special needs must adjust ours. Of course, we have parenting guidelines, but there is not a to-do list — one size fits all is not our norm.
I often meet other moms of children with autism and wonder what keeps them going, how do they keep their cool? I want to hug them and take away their pain, but none of us have the ability to do that for anyone. We can walk together, but we each have our own unique journey. We are the ones to decide what is our ultimate destination.
About the blogger: Jaya Pandey’s 17-year old son, Anand is cared for at Boston Children’s Hospital Developmental Medicine Center. Follow Jaya’s journey in parenting a child with autism at momlovesanand.blogspot.com.