I am a writer, and mother of a child with disabilities. My daughter Jessica is thirty-eight years old and resides in a group home. Over the last 10 years, I’ve been writing a book about her. It’s now a completed, 55,000-word memoir. The Shape of Normal is a story that explores the truths and lies parents tell themselves. Denial protected me from the stark reality of my child’s diagnosis until I slowly achieved acceptance. As I learned to straddle mainstream society and the world of disabilities, I had to challenge my deep-seated attitudes of ableism. Few books offer resources to help parents face an unexpected diagnosis, but I depict my struggle with honesty. I challenge my attitudes and do not shy away from the complex subject of how I learned to manage what appeared unmanageable.
When I began researching facts about parents with children with an intellectual disability, I discovered that In the United States alone, there are roughly eight million people with intellectual disabilities, including 425,000 children.
I had no idea I was part of such a large segment of this population.
My Greatest Teacher
I always struggled with the idea Jessica was less than perfect. As it turned out, she was my greatest teacher. She taught me I was the one who needed to change. I think about Erin, a fellow writer friend. She is the mother of a teenaged son who had to be placed in a residential facility. The boy lives there because his uncontrollable, violent outbursts were a threat to her and her family. I’ve often imagined how she feels. Is she constantly wracked with guilt like me or does she feel she made the best choice for her family? Every month she drives three hours to go visit her son, only to hear him ask why he cannot come home. I commend her for her devotion to her son and the rest of her family. I’ve commented on the endless and selfless ways she’s helped her son throughout the years. I commend her bravery and courage, but I realize I could say the same things about myself. I think about the years Jessica has lived in the group home; about the day I moved her there. I’ve also wondered how many other mothers or families would benefit from reading a blog about my experience. How many parents might hunger for a book that addresses these universal concerns? I imagine my story will act as a bridge between parents of typically developing children and children with disabilities.
The Group Home
Over the years, I’ve spoken to hundreds of mothers like me, a parent of a child with disabilities. I have lived the experience of this immense challenge. I understand what we’ve all had to face. It reminds me of what we all have in common, the loneliness we’ve experienced, and the common thread that link us as mothers of these unique individuals. I’m lucky that my daughter, unlike my friend’s son, has never been violent, but I’ve witnessed, firsthand, how that aggression looks. Years ago, one of Jessica’s friends bent Jessica’s finger so hard, the teacher thought it might be broken. I took Jessica for x-rays. I remember when the girl’s mother told me her daughter threw a brick (where did she find a brick?) through the T.V! I tell myself to be grateful for small miracles.
It was a challenge when we first decided to move our daughter into a group home. I’d heard all the horror stories about them—a mother’s worst nightmare—so naturally, I was hesitant. Another friend pulled her son from a group home when she discovered the truth about the horrible conditions, lack of medical care, and so on… The boy was nonverbal, so he couldn’t call for help. I don’t think he even knows how to use a phone. I’ve always imagined how this made my friend feel. I’ve considered asking her – “Do you feel guilty about what happened?” But she’s so pragmatic, I imagine this never crossed her mind. I admire this woman. She’s a bright, strong, sensible mother. I wonder: If the same thing happened to me, what would I do? I’m pretty sure I’d still be blaming myself
When you have a child with any type of disability, you never stop worrying. Although Jessica appears to be thriving in her group home, at times, she becomes intimidated and refuses to explain what’s wrong, then shuts down like a shuttered storefront. These minor issues pale when I think of my friend’s son, the boy in the residential treatment center. While I know deep down, I’ll never fully accept Jessica’s limitations, I also know I must. There was never a choice. Although I’ve had to accept this reality, part of me continued to wrestle with the truth. Sometimes, I still do. An internal battle ensues. Although I am one hundred percent committed to my daughter, part of me protests – “I don’t want to do this anymore!”
Being a parent of a child with a disability is a lifelong commitment.
When Jessica was four and a half, my husband and I were told Jessica was “profoundly retarded.” Those are the exact words the doctor used Thankfully, that sort of label is no longer considered acceptable in our culture. Thankfully, our world has changed, people have enlightened attitudes. I used to cringe whenever I heard my child being described as someone who was stupid. I had no way of knowing those terms would one day be considered taboo. I’m glad there are better words to describe people with different abilities. But I didn’t always appreciate the lessons my daughter taught me. I’ve wondered if I would have developed into the type of mother I became if I wasn’t forced to face these challenges. I am forever grateful to my husband, to Jessica, and her sisters for helping me grow as a person, and a human. Most of all, I want to share with the world, what it looks like to live on the other side of normal, to proudly announce I am a parent of a girl who resides in the world of people who have different abilities.
I once heard the writer Amy Tan speak about where she gets her inspiration for her best-selling novels. She spoke about the spirit of her dead grandmother whispering in her ear, and that she keeps a photo of that beloved grandmother beside the computer screen.
After I heard that, I put Jessica’s photo above my computer, with the caption “Write about me.”
Catherine (Cathy) Shields writes about parenting, disabilities, and self-discovery. She is a retired educator with an M.S. Ed in Exceptional Education. Her experience includes networking and dealing with children and families of persons with disabilities. Cathy and her husband reside in Miami, Florida, where they raised three grown daughters. They kayak, ride bikes, hike in the Everglades, and visit the two grandchildren who live nearby.