Since my son was diagnosed with autism in 1992, I’ve been involved with those who serve individuals with intellectual disabilities. I often read books by parents of children on the spectrum, the occasional clinical study, and many media articles on the subject.
What sometimes bugs me about articles I read about autism is they sometimes lack any basis in reality from what my family or others I’ve known have experienced.
Being a parent is a difficult task in today’s complicated world. Being a parent of a child with special needs is also difficult, in a different way.
Several weeks ago, I received a copy of the book “Not Different Enough: A Thirty Year Journey with Autism, Asperger’s and Intellectual Disabilities” written by Gloria Doty. I chewed through this book like someone finishing a cherished desert, because the content was so rich and relevant to anyone who loves a child or adult with special needs.
Doty, who lives in Fort Wayne, was one of my church youth league sponsors in the 1970s in Whitley County. We reconnected through mutual church friends on Facebook and she shared her wonderful book with me.
She is the mother of five adult children, and her youngest, Kalisha, is the subject of the book.
Kalisha is now thirty and lives with Doty in Fort Wayne.
In her book, Doty relives in total reality some of the most difficult times and struggles of raising a child with an intellectual disability. What is so compelling about this book is that she doesn’t hide anything from the reader. She owns up to some of her own mistakes, which any parent – who is honest – can fully understand.
“I wanted to write a book for parents about things they probably cannot learn in a doctor’s office,” she said. “Every child is different but there are some things that connect the dots.”
Doty explained that her daughter lives in two worlds, an adult world in which she can plan her own birthday party and deal with vendors, and a world in which she has a childlike interest in going to Build-a-Bear and stuffing a toy animal.
Doty started writing a blog (gettingitright-occasionally.blogspot.com) and now contributes regularly to moms.fortwayne.com, part of the Fort Wayne newspapers group.
Friends suggested she write a book, because she always had a million Kalisha stories. The book covers many personal issues that parents may be afraid to talk about, as well as dealing with the pressures of being a teenager with autism. One of Doty’s final chapters deals with her daughter being held captive in a bad situation for several days. She is a courageous writer to share these difficult details of a frightening situation her daughter experienced.
Though Doty is now her daughter’s legal guardian, she asked Kalisha if she wanted to read the book, and Kalisha responded with her usual stoicism that she did not, but wanted her story told.
Anyone involved with a person who is on the autism spectrum will tear through this book, because of its realistic, ground-level retelling of Kalisha’s life, both struggles and triumphs.
Her mom is proud of her and has every right to be. When Kalisha planned her thirtieth birthday party in February. She handled all the invitations, arranged for Johnny, the Tin Cups’ mascot to attend, and selected the food. She welcomed more than 100 guests, including her very first teacher from the Blue School, other teachers, relatives from out of state and Indianapolis, and many other friends.
But what made her mother really proud is that Kalisha didn’t want gifts and asked that her guests bring items for two organizations close to her heart, the Hope Center and Animal Care and Control. The room was filled with baby things as well as many pet products.
Gloria Doty is so real in her writing of this book, and one of the stories she told made a huge impression on me, and I believe, is at the heart of describing a person who truly lives in two worlds.
When Kalisha’s beloved grandmother, Gloria’s mother, passed away, Kalisha was nine. Gloria was advised not to take Kalisha to the wake as it might upset the child too much.
Doty felt differently and took her youngest child up to the casket. Kalisha asked why her grandmother was wearing glasses. She said, “She’s not going to need them in heaven, y’know.”
The book continues, “Quite typically, she (Kalisha) was saddened but didn’t shed any tears. However, she did ask if Grandma was going to help Jesus hang the stars in the sky every night. I thought that was so sweet until she continued, “I want that to be my job when I die and go to heaven. I don’t want Grandma to get my job.” I assured her there were enough stars to go around.”
Buy her book here: www.amazon.com/Not-Different-Enough-Intellectual-Disabilities/dp/1491855096/