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“Meanwhile, my son remains a huge source of joy. It simultaneously kills me and inspires awe in me to watch him.”

By Dilshad Ali

My oldest son is profoundly autistic. I don’t mean to put him in a box, but he is nonverbal. He uses an iPad to communicate basic wants and needs. He needs support in all aspects of his day.

My husband is from India, and we draw on the Indian tradition of having strong support from extended family. My in-laws live with us and help care for my son. He has a whole community of helpers—his family, his school, his therapists. But I’m his primary caregiver.

My son had some awful years that were marred by illness. In 2012, he started exhibiting acute, punishing self-harm. In 2014, he sustained a terrible accident that will affect him permanently. Somehow, he has moved on and adjusted to his new normal. But I feel permanently altered by his injury. 

The grief is always with me, and I feel as though a part of me has died.

Meanwhile, my son remains a huge source of joy. It simultaneously kills me and inspires awe in me to watch him. He moves forward—he gets up every day, lives his life, loves us, and trusts us. It is a beautiful and a scary thing when somebody trusts you so implicitly and so fully, because you think, “Oh God, I don’t want to mess this up.”

I’ll always remember a piece of advice I got from a colleague of my husband, who also has a child with autism. She said, “You’re going to have to work at being happy. And if that means sometimes you need to take a break, take a walk, or even go on a trip, then make it a priority.”

So I work on being happy.

I’ve had to learn to practice self-care, because self-care is not an Indian concept. For me, this means getting back into bed in the morning, once the kids and my husband have left the house. It means making time to read or meditate—whatever it is I need to do to feel healthier, happier, and more at peace. And it means actively reminding myself to find joy wherever I can. It also means reminding myself that this is my son's story—his to live, not mine. I'm an active witness, supporter, and chronicler, but he is still writing his story, as am I.

_________

Dilshad D. Ali is the managing editor of the Muslim channel at Patheos, the largest multifaith religion and blog site in the world. She is also the editor-in-chief of Altmuslim, a microsite at Patheos Muslim, and writes at the Muslimah Next Door on faith, family, and autism. She was awarded the White House Champion of Change for her autism advocacy and currently serves on the Virginia Autism Advisory Council. She is mom to three great kids and one fat cat.

Image Credit: Greg Kahn/The Verbatim Agency for OptionB.Org

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