Tag Archives: special education

Then and Now

Scan_20160202When 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 someday 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. Doctors told parents it was in the best interest of the family. The special child would be a financial drain and 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.

From the Preface of This Little Light of Mine, A Woman with Down Syndrome Shines Brightly in the World, available at amazon

Kiki’s Adventures in Kindergarten

Scan_20141115 (2)Kirstin’s first year in public school was a success in some ways but difficult in other ways. As much as we thought Kirstin was prepared for school, she was still behind the other children, and her progress was less than we had hoped. She did not participate in group activities such as singing or art. On the playground, little boys fed her sand. She wandered away and had to be supervised at all times. In spite of the problems, testing at the end of the school year did reveal progress. When she entered kindergarten, she could recognize six out of eight colors, one out of ten numbers, and could not count at all. By the end of kindergarten, she could identify eight out of eight colors. four out of four shapes, nine out of ten numbers, twenty-two out of twenty-six letters, count to five, and print her name. Her scores put her in the fourteenth percentile, but taking into account where she was when she began, that was amazing progress.

We also found out that Kirstin was learning to stand up for herself. One day I received a phone call from a somewhat frustrated principal, who told me Kirstin had come into his office on her own. She told him that someone on the playground had pulled down her pants. The principal wasn’t sure what to do , because Kirstin, hands on hips, kept insisting, “the pink girl did it.” Unable to identify the “pink girl,” he said there wasn’t much he could do except ask the playground aides to keep an eye out. We were satisfied with that and also relieved to see that Kirstin was learning to handle her own problems.

It is doubtful that the “pink girl” was someone in Kirstin’s class. If that had been the case, Kirstin would have known her name. At the end of the kindergarten year, there was a promotion celebration in her classroom. The teacher talked about each student and his or her special abilities. Kirstin, we found out, was the only student in the class who knew everybody’s name. While her social skills might be lagging, she certainly was paying attention, and she could remember things that were important to her.

Excerpt from This Little Light of Mine, A woman with Down syndrome shines brightly in the world. Available on Amazon.

An “aha moment”

 

Scan_20141006I’ve heard Dr. Phil talk about an “aha moment,” one of those times in a person’s life that will always be remembered, because it was at that very moment something life-altering occurred. I had one of those moments in 1979. Kirstin was attending the regular preschool, and her teacher and I were having trouble communicating about her progress.  Flo suggested that we keep a notebook at the preschool. She would write in it each day, and so would I.

Everyday, I wrote about Kirstin’s accomplishments. “Today Kirstin asked a question. Kirstin helped make her bed. Now Kirstin can put on her shoes.”

As I have said, Kirstin’s attendance in the regular preschool pointed out many areas where she fell behind. Every day Flo would write about something Kirstin had trouble with. “Today, Kirstin wouldn’t participate with the other children. Kirstin had trouble using scissors. It is hard for Kirstin to color inside the lines.”

Every day, I read Flo’s comments and felt more and more frustrated. One day after reading all the things that Kirstin couldn’t do that day, I wrote, “Isn’t there anything Kirstin can do?” That was my aha moment. It was at the moment I decided to become a special education teacher. I would focus on what students were able to do and use that to build upon. That way we would focus on the positive not the negative. If you can do one thing, I surmised, you can learn more, and there’s no way to tell how far that can take us. That has stayed my teaching philosophy for twenty-nine years.

It was during my course work in special education I had another experience that contributed to what would later become my teaching philosophy. One of my professors had worked at the Coolidge facility and related this story to us. He was looking in on some of the residents, and while he was there he told a joke to the nurses. They didn’t get the joke, but a woman with cerebral palsy laughed. Her cerebral palsy was so severe that she could not move her arms or legs, nor could she speak. Confined to a bed or wheelchair, she required constant care as if she were a baby.

The fact that she laughed intrigued my professor, so he decided to try a little experiment. Arranging the room so she could not see him, he told another joke. Again she laughed. This was repeated, and in every instance, she laughed at the appropriate time. Certain that her brain activity was much more than anyone knew (people with cerebral palsy can have average intelligence and above), he decided to develop a program so that she would be able to communicate and learn.

Before he could put his plan into effect, the family of the woman took her home for Christmas. While she was there, she developed pneumonia and died. It struck me as so tragic that, for her entire life, she had been unable to express to others the extent of her understanding of what was going on around her. And now that someone had discovered the truth about her, it was too late. That story has stayed with me, and it is the reason why I never give up on a single student. How do I know if the next thing I try will be the answer?

From This Little Light of Mine, a woman with Down syndrome shines brightly in the world. Available at amazon