Why Special Needs Parents Write

I started putting ink to page over a decade ago, in 2006, when my daughter Hannah was diagnosed with autism. In a disorderly fashion, these scribbles have been collected on everything from napkins, to my iPhone’s printed notes, to journal after journal.

Like unsorted photos from the past, these memories have piled up over the years. Their containers are located adjacent to yet another set of containers that store doctors’ and therapists’ notes, Individual Education Plans (legal educational documents), and a superfluous amount of pamphlets, flyers, articles, and conference handouts. While the paperwork means nothing to the average person, it’s my collective treasure of proven effective interventions and strategies that have helped Hannah progress along the autism spectrum—evidence.

Although the containers house resources and emotional ramblings, only my scattered memories can weave our journey together. And, I have been driven to understand these memories.

You see, over a decade ago, I had no time to process the painful experiences. For if I had, the grief would have been too overwhelming. Moms can’t break down. So, disassociation was my best alternative.

Most authors write with one of three purposes: to persuade, to inform, or to entertain. I can’t seem to find my desire to disclose our story conveyed by any of those three simple words. My passion for writing, along with most special needs parents, is more profound than one word can even fathom to encompass. Writing gives all of my experiences related to autism since 2006 structure.

We Write Because Writing is Cathartic

Writing is a healing therapy for me. Disability Scoop published a study in 2009 stating that moms with children with autism have stress similar to combat soldiers. By writing about a time that seemed like a tragedy I had no time to process, I am able to explore episodes that have remained dormant for years.

Writing helps to dissolve some of those hard knots of fear, grief, loss, and guilt that have kept me stuck in the past. I’ve had to sit in some dark places trying to shape the past’s meaning. However, once on the page, those undesirable knots subside—the experience has been transformative. I felt no control over Hannah’s autism—it’s a terrible feeling not being able to fix your child’s challenges. Writing is a way to interact with and interpret the past with truth and clarity. It illuminates our experiences as they were.

Writing has taught me not to sidestep any issues or try to eliminate painful experiences. I have found that if I do, the result does not speak truth in order to bring about closure. For me, until I record it, the story seems unfinished and cheated—even if the reader would never know. Once on the page, it’s as if a great weight, a weight of the past, has been lifted. Truth brings peace. Sometimes my words may seem too harsh, my personality hardened, or my convictions too strong; however, the root of my beliefs always lies in what is best for our kids affected by autism.

We Write to Describe Our Experiences to Others

Writing allows me a venue to share my feelings with others. Hannah’s autism diagnosis was a defining moment in my family’s life that changed our course. I have publicly kept quiet beyond my words on a page. No one wants to hear about our challenges day-in and day-out, and I don’t want others’ pity. However, I have a huge inner life that needs a public voice. I write not only to hear that voice, but to share that voice.

I also believe that reflecting on my past in writing will allow others to feel less lonely. Sharing private experiences in a public forum reveals our family’s life on the front lines with autism. Hopefully, others are enlightened that autism is all about community and learn that other families experience similar situations. I love knowing that our story may help other families—it’s as though my writing says, This is who we are, this is what we’ve been through, and I hope your family can learn something from us. I believe that others will benefit from our experience by following our successes and steering clear of our failures.

We Write as Staunch Autism Advocates

After attending the Autism Society of Indiana’s Autism Expo this weekend, I continue to be thrilled by the movement in autism awareness, advocacy, and prominent supports. The number of therapy centers and programs that have been created since Hannah was going through early intervention is nothing short of a miracle. The autism writing community also influences those changes. Words are powerful!

When I sit down to write, I feel as if I’m a representative of the autism community—not just Hannah’s mother. My words are intended to encourage early identification, immediate interventions, and resilience along the journey. I don’t want others to go without support.

We Write to Create a Literary Archive for Our Families

Early intervention and continued support have been transformative for Hannah; however, the mass of paperwork houses painful memories that I don’t want so visible—they carry emotional valence for me. I don’t want to relive it. However, I do want both of my children to value our family’s trajectory. I don’t ever want its essence forgotten, so I find personal satisfaction in examining and documenting our life. I want to get it on record as our story that we can read and re-read.

Pulling our history together in narrative form assures that our path will not be forgotten. Shared memories make our past seem more authentic. It leaves a piece of us behind that Hannah and Connor will crave in their older years—a legacy. There is value in capturing both treasured and challenging memories—a timeless gift.

We Write for a Clearer Version of Who We Are Today

Only by reading about the challenges that my family has overcome can I appreciate where we are today. In other words, as I look at what makes our journey worth reading, I also reveal what makes it worth living. I write to find myself and tap into my gratitude. Hannah has come a long way, and I have found peace after divorce.

I believe I am so much more than the single, working mother who sometimes feels as if the daily grind of fixing meals, packing backpacks, teaching school, shuttling my children, helping with homework, and tucking my children into bed is all I am meant to do. I never want to lose myself as I had before.

So, why do special needs parents write? We write to preserve the past, share our present, and hope for the future. Through writing, I’ve realized that I’m not alone, and neither are you! Only by looking at my family’s past have I been empowered to move on with the rest of our life and see the role I can take in the lives of others.

I welcome any comments that you can share on how writing has helped you along your journey with autism—just find the blog tab across the top of this page and comment after this post.

Take care,

Lori