This Little Light of Mine

“Timing is everything,” as the expression goes. When I gave birth in 1975 to a daughter with Down syndrome, I had no idea how significant my timing was. When Kirstin began preschool at the age of one, her teacher told me I could not have chosen a better time to have a child with a disability. It was years later, when I began taking courses to become a special education teacher that I came to understand what she meant. In 1975, Congress passed Public Law 94-142, which established special education for all school-age children with disabilities. Special education has changed a great deal since the early days. For example it now reaches down into preschool, giving special students a jump start. But we had to pay for Kirstin’s special preschool program, which was quite a sacrifice for young parents. I am so happy that parents today don’t have to bear that burden.
I guess you could say that Kirstin and special education have grown up together. She is the product of a school system that had to provide a free, appropriate public education for her and all children with or without special challenges. How well has special education worked? You be the judge as you get to know Kirstin. But this is not just the story of special education; it is the story of a special woman. Kirstin’s amazing accomplishments make her worthy of having her story told, and so we are telling it together. Kirstin has her own comments to make, and in every chapter, she has the final words. She decided to name her section “Kirstin’s Side of the Story.” I’m sure you will find it enlightening and inspiring.
Most authors are worried about getting the approval of an editor or critics or the readers themselves. Before I even get that far, I have to get my words past a more severe judge. I don’t have the luxury of making things sound better than they are. I won’t be embellishing stories to get a laugh. Everything I write must be honest and respectful. Kirstin will hold me to that—a fact I learned the hard way.
When Kirstin was two years old, I was the chairman of Mother’s March for March of Dimes in Chandler, Arizona. The local newspaper sent a reporter to our home to interview me. She asked a lot of questions about raising a special needs child and about what I thought life would be like for us in the future. She took a nice picture of Kirstin and me sitting on the swings in our backyard.
I had totally forgotten about the experience when many years later, my cousin, Connie, came across her copy of the article and sent it to me. We were living in Chino Valley, Arizona by that time and Kirstin was in high school. Without looking at the article, I passed it to Kirstin, thinking she would enjoy reading it. Several days went by and Kirstin never said a word about the article. Finally I asked her what she thought about it. After a few awkward moments, she muttered, “I was embarrassed.” Puzzled by her response, I took a look at the article myself. To my horror, I discovered that I had painted a pretty dreary future for our family. I had said that Kirstin would stay with us no matter what; we would never put her in an institution. Even though it might be embarrassing at times, we would keep her with us wherever we went.
The person I was picturing back then had no resemblance to the bright, charismatic charmer who is the adult Kirstin. Had I considered that someday Kirstin would be capable not only of reading the article but of fully understanding what she read, I would never have spoken those words.
Before Kirstin’s birth, I had practically no experience with special needs children. In high school, I had read Angels Unaware, written by Dale Evans, which is about her daughter who had Down syndrome. She and Roy Rogers raised this daughter at home. It was written from the point of view of the child who only lived for two years. It greatly moved me, but I never considered that some day I would be the parent of another angel. At the time Dale Evans had her child, parents were being encouraged to put their disabled children in institutions. In fact, in her book, she talks about the institutions being so full that children were placed in foster homes until they could be institutionalized. Parents were told by their doctors that it was in the best interest of the family. The special child would be a financial drain and would take up so much of the parents’ time that their other children would suffer.
When Kirstin was diagnosed with Down syndrome, the doctor mentioned putting her in an institution as a possibility, but it was not one we ever considered. Nor was it something the doctor expected us to consider. Parents today aren’t given that option at all because such institutions don’t exist. If families are unable to care for their special needs children, there are generous, loving families eager to adopt. At times, excellent foster families provide appropriate homes where these special children are able to thrive. Adults with special needs remain at home or in group homes as participating members of their communities. This is also the story of how that came about.
I chose to call our book This Little Light of Mine, thinking of the Sunday school song, “This little light of mine, I’m gonna let it shine…Hide it under a bushel? No! I’m gonna let it shine.”
Kirstin does shine in this world. Because she was able to attend school with her peers, students today don’t say, as I did, their experience with special needs children is limited to reading a book. These special students are their friends and classmates. Later in life, they are their customers, employees, and coworkers, and all our lives are better for it. While they do have special needs, they also have special gifts. There is plenty they can teach us in this cynical, dog-eat-dog world. From them we can learn tolerance and patience, which are virtues most of us are weak in. Yes, Kirstin does shine in the world, and she lights it up everywhere she goes.

KIRSTIN’S SIDE OF THE STORY
Everyone is special in his or her own way. I do think about special needs children like me. We like to help people. I have lots of friends with disabilities. I have friends at work who care about me. My parents help me with my problems and make me happy. I enjoy reading in my leisure. I hope you enjoy reading my book.

“You have a little girl.” Those were the first words I heard from the nurse when I woke up in the recovery room on June 9, 1975, after a cesarean section. Realizing through the fog of anesthesia that I had gotten what I wanted, I closed my eyes and went back to sleep. Later, back in my room, the doctor came in to tell me all had gone well. My baby was slightly jaundiced but otherwise fine. He mentioned her ear was kind of floppy, but he said it would probably be all right later. If not, a few stitches would fix it. No problem.
When the nurse brought my daughter to me, I checked her over, of course, counting fingers and toes. My husband, Craig, and our son, Michael, came to visit. They had already named her Kirstin, after one of Michael’s friends at preschool. I added the middle name, Renee, as it was the name of one of my cousins, and I had always admired it. Later, my mom and Craig’s parents came in to see me. There are three boys in Craig’s family, so his mother, Mary, was especially pleased to have a little girl. She told me that when the nurse said it was a girl, she thought she was talking to someone else. We all laughed at that and were happy we had the healthy baby girl we wanted.
I stayed in the hospital for three days, recovering from the surgery and getting to know my new daughter. I couldn’t quite figure out who she looked like, and sometimes when we were alone, I would whisper, “Who are you?” I don’t know what made me feel that way, but there just seemed to be something different about this new addition to our family.