Tag Archives: Down Syndrome

A Life Without Limits

born this wayI’m not a big fan of reality  TV, but Kirstin and I discovered a show we really like. It is called “Born this way.” All of the people on the show have Down Syndrome, and it is one of the happiest, most uplifting programs I have ever seen on television. It is on A&E on Tuesday nights.

Sean is a young man in search of a girl friend. In last week’s episode, he went to Vegas to see Justin Bieber–without his parents. While there, he went on a blind date. The date went well, until Sean decided that he needed to get a tattoo. So he took his date to a tattoo parlor and chose the tattoo he wanted. His chaperone suggested that he call his parents for permission first. I love his mom, she was so cool about it. She didn’t tell him he couldn’t get a tattoo, but she did tell the chaperone that it was okay because he didn’t have enough money. Sure enough, when the shop owner ran his debit card, it was declined. Sean had to settle for getting a temporary outline of the tattoo.

Megan is a beautiful young woman who has lofty goals. She has her own business, called Meganology. It is a on-line business where she sells items she makes from cloth she dyes using ice. They are really very lovely and she does pretty well selling them. In one episode, she was meeting with her staff. There was no doubt who was in charge.  In last week’s episode, Megan and her friends traveled to Trinidad to attend the Down Syndrome World Conference, where she was a keynote speaker. Megan also has a very supportive mom, but she and her mom are at odds over one thing. Megan wants to move to Los Angeles to build her business–and live on her own away from family and friends. I can’t wait to see how that turns out.

The theme of the show seems to be “Don’t limit us.” Whether it is fighting to be in regular classes or to attend college, they all are equal to the task at hand. Like all young people, they have plans and dreams. They are not afraid of working hard and putting themselves out there to reach those dreams. Fortunately, they have families who support them and encourage them. Anyone who watches this program will find themselves believing in these remarkable people and rooting for their success.

It is tragically ironic that at a time when people with disabilities are being heralded as heroes, these very special people are in danger of being eradicated from the face of the earth. Medical advancements have made it possible to diagnose Down syndrome in utero. Currently, ninety-percent of the babies with Down syndrome are being aborted. When you consider all of the opportunities available today for people with Down syndrome, it is so sad to think that most of them aren’t even given a chance to live. Hopefully, television shows like this one will help stem the tide.

A Whole New World

do not despise

In the summer of 1976, Kirstin was enrolled at the Marc Center preschool in Mesa at the ripe old age of thirteen months. I couldn’t imagine what she would do in school at that age. She wasn’t even walking yet. Kirstin had a speech therapist, physical therapist, and an occupational therapist. She was hardly talking, and I didn’t think she was ready for a job. This seemed like a lot of therapy for such a small child.

Marc Center was more than just a preschool. It provided for the needs of special people of all ages. There was a day program for school-aged children who were considered trainable mentally disabled. In addition, adults received services from Marc Center that included independent living skills and vocational training.

In 1975 Congress passed Public Law 94-142 (Education of All Handicapped Children Act). Today it is known as IDEA (Individuals with Disabilities Education Act). It requires school districts to provide a free, appropriate public education to all children no matter what the disability. Over the years it has been redefined and today carries so much clout that it sends school districts into a tizzy trying to comply. In 1975 the concept was new, but school districts had to figure out a way to include these students in their schools or face losing federal funds. What that meant at Marc Center was that they no longer needed a program for school-age children. Starting in the fall of 1976, all of their students would be going to public school.

Since we came on the scene the year 94-142 went into effect, we never saw what the school program was like at Marc Center. But we did have a great deal of involvement in the adult program. Our experiences at Marc Center opened up a whole new world to us. It was a world of shocking truths and amazing changes. We were there to witness them all.

At that time, the Arizona legislature was holding hearings about what should be done with a residential facility in Coolidge, Arizona. It was home to hundreds of people with mental retardation who had been institutionalized there, some of them since birth. Housed in a clinical setting, most residents had no hope of ever leaving. Families had been encouraged to place their children there and many of those children spent their entire lives institutionalized. Now those people who had been isolated from society were asking for a chance to live in a home like everyone else. Craig and I attended some of the hearings. We sat in awe of those residents from the institution who now stood before the legislative committee and pleaded their case. I can’t imagine how I would feel having to face such a panel, but these people were articulate and sure of what they were asking. I thought of other minority groups who had to fight for equal rights. Like Martin Luther King Jr., they were talking about their dreams for a brighter future. I thought of Chief Seattle, asking for fair treatment for his people, or Cesar Chavez and the California grape growers, fighting for fair working conditions. They did not expect someone else to speak for them but stood up for themselves just like any other group of people battling injustice. What they wanted is what was spoken of in the Bill of Rights … life, liberty, and the pursuit of happiness. They wanted to be able to live as independently as possible in the community with the rest of us. It seemed like a simple truth to me; they should have that right.

Fortunately, the Arizona legislature saw it that way as well. As a result of these hearings, most of the Coolidge facility was closed, and all but the most severe residents were placed in group homes in communities throughout Arizona. Of course there were some difficulties with neighbors who had no knowledge of people with cognitive challenges. Some were convinced that their new neighbors were oversexed and unable to control themselves. But little by little, the former residents of the Coolidge facility won their rights and adjusted to their new lives.

We met a man who had lived in an institution for thirty years and was now learning to balance his own checkbook. Like many others, he was benefiting from participation in the adult program at Marc Center. Their levels of abilities varied, and so did their needs, but now they had a chance to live as independently as they were capable of. It was an amazing experience, and we felt so fortunate to be a part of it.

Today, there is only one intermediate care facility in Arizona. It houses about one hundred residents whose needs are so severe that they are unable to survive outside a clinical setting. In the past five years, no new patients have been added to that facility. The goal of the DDD is to keep those with intellectual challenges in their homes if at all possible. In fact, Arizona ranks number one in the country in that regard. In addition to living at home, supported living arrangements and group homes are also very good options. Ultimately, the choice comes down to the person with the special needs, and that is as it should be.

From This Little Light of Mine: A Woman with Down Syndrome Shines Brightly in the World.

Escalating Problems

Scan_20141115 (11)Kirstin’s most annoying habit was that of disappearing. Houdini himself could have taken lessons from her. And, of course, she would choose the time and place to vanish when it was most disruptive to our plans.

She loved the mirrors in dressing rooms, and that was usually where we found her. Of course she would be talking to her imaginary friends quite loudly, and so we knew where she was. We thought about getting one of those leashes you see parents using sometimes, but that just didn’t seem right. Kirstin wasn’t trying to make our lives a nightmare; she just was off in her own little world. Over time, she came to like the real world more and grew out of her need to wander away.

On a few occasions, Kirstin was able to take advantage of some electric conveyance to aid in her escape. Her brother, Michael, talks about a time when Kirstin took a daring ride on an escalator at the mall. Instead of stepping on the stairs as they appeared, Kirstin grabbed hold of the outside of the handrail. Before we knew what was happening, she was carried upward, clinging to the side of the escalator like a monkey. As Michael describes it, “She went up the wall.” Actually, she was traveling in the space between the wall and the escalator. Responding quickly, Craig ran up the escalator and snatched her from a potentially tragic end to her ride.

It was just Kirstin and I together on another escalator adventure. Kirstin was a preschooler, and the two of us were shopping in a large department store. I was carrying two huge bags filled with purchases and let go of Kirstin’s hand briefly to adjust them. In the short span of a few seconds, Kirstin took the opportunity to hop on the escalator. With little time to react, I jumped on after her. As I bent down to scoop Kirstin up, the strap on my handbag fell off my shoulder and became entangled in my feet. There was no way to free myself without the risk of dropping my packages, Kirstin, or both. As we rode to the top of the escalator, I contemplated how I was going to extricate myself from this mess. At the same time, I knew there was a distinct possibility that we would both plummet to a painful death. When we reached the top, I was somehow able to get us off the escalator. I waited until I stopped shaking before attempting the trip back down.

On another occasion, it was an elevator that carried Kirstin away, this time purely by accident. We were on a vacation to New Orleans, where we had reservations at a Holiday Inn just off Bourbon Street. We parked our car in the parking garage. Craig and I were busy getting the luggage out of the car when Kirstin, now about fourteen, spotted the elevator. She pushed the button, and when the door opened, not realizing we weren’t ready yet, got into the elevator. Without her knowing this could happen, the doors closed on her and she was whisked away. In my mind, this elevator was something like the Wonkavator from Charlie and the Chocolate Factory, the one that could go upways and downways and sideways and crossways. Although Kirstin entered the elevator in the parking garage, she ended up in the hotel. Fortunately, there were cameras on the elevators, and after showing us a few children we didn’t recognize, security was able to locate Kirstin, who was on her way down from the top floor. (It’s a good thing there wasn’t an up and out button like the one in the Wonkavator.) After what seemed like an eternity, the elevator door opened, and Kirstin walked out, happy to see us.

From: This Little Light of Mine, A woman with Down syndrome shines brightly in the world. This book is available on Amazon

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

Kirstin Says . . .

IMG_0123Every chapter of This Little Light of Mine ends with a section called “Kirstin’s side of the story.” It is clear from reading those sections that Kirstin has lots to say. Here are some of her words.

“Everyone is special in his or her own way.”

“Everybody should be treated nicely by other people. We all need to have respect for each other every day.”

“If someone is having trouble learning to read, I would tell them not to give up. You can do it if you put your mind to it. Read as much as you can and you’ll get better at it. We all have problems. Yours is learning to read, but you can solve it. Find a good teacher who will help you and never give up on you.”

“I have some advice for high school students who want to go to college. College is not an easy thing to do, but you can learn to do it. Do the best you can. That is all you can do. All you have to do is believe in yourself. Tell yourself that you are special in a lot of ways. It doesn’t matter who you are as long as you have parents and friends to help you. Don’t let any teachers tell you that you can’t do it.”

“My mom wants to know why we like The Wizard of Oz so much. I think it is because everyone in the story has problems, but they have what they need to solve their problems. The scarecrow wishes for a brain. He thinks he isn’t smart, but he really is. Tin man wishes for a heart. The wizard tell him ‘A heart is not judged by how much you love, but how much you are loved by others.’ The Cowardly Lion wishes for courage. He faces the Wicked Witch and he is brave when he needs to be.  Dorothy wants to go home. Glinda tells her she always has the power to go back home.  The ruby slippers help her when she says ‘There’s no place like home.’ Everyone is wishing for something, but they have it all the time. They just don’t realize it until the Wizard points it out.”

“My advice to someone looking for a job is be flexible and willing to help people when they need it. Don’t be afraid to learn new jobs. It makes you more valuable, and it’s job security.”

“I read the book by Dale Evans. I was crying when I read about Dale’s child with Down syndrome. I was sorry that she died. I know she is happy in heaven. I think she is looking down on me right now. She is helping us who have Down syndrome.”

“We are all angels in this world. We all should care.  We all should love.  We all have feelings. We all should forgive. Talk about your problems with others who have experiences like you. Control your anger with other people. We all have heroes. We all need someone to look up to. ”

“We need to keep our earth clean. That way we will have a place to live and grow up. We all have to do our part.”

From: This Little Light of Mine, A woman with Down syndrome shines brightly in the world. This book is available on Amazon

Living with Bratinella

 

Scan_20141115 (8)When Kirstin was about four years old, she started doing something that left us wondering what we, as parents, were in for. Every time we dined at a restaurant, Kirstin would wait until we were all finished eating before she began her meal. At first, we wouldn’t notice, everyone was talking and not really paying attention to Kirstin. Later, we tried to encourage her to eat, but because she was stubborn or for reasons of her own, she wouldn’t eat. The rest of us felt like we were being held hostage by a small child, as Kirstin slowly consumed her meal with all of us watching. It was pretty obvious what Kirstin was getting out of it. She was calling the shots and controlling her whole family. Now she had our undivided attention.

Because she only weighed about twenty-two pounds, we were reluctant to have her go without eating. That put us in a difficult situation of learning to live with Kirstin’s stubbornness, force-feeding her, or taking doggy bags so she could eat in the car. Afraid that this could become a pattern, I decided something had to be done. The next time we were dining out, Kirstin sat as we all ate our dinners. We tried not to notice, and just carried on a normal conversation. When we were all finished, true to form, Kirstin began slowly eating. I stood up and announced, “Well, we need to get going.”

To this, Kirstin responded, “I’m not done.”

“Too bad,” I said. “You should have eaten while you had the chance.” Then we took her by the hand and left the restaurant, leaving her uneaten meal behind. To our relief, we only had to do that once. The next time we were dining out, Kirstin ate her meal with the rest of us.

We learned a few things from that experience. First of all, we learned how easily we could be manipulated by this tiny child. But we also learned that she could figure things out for herself. If we remained consistent in our expectations, Kirstin would be able to make good choices, and life would be better for all of us.

 

From This Little Light of Mine, a woman with Down syndrome shines brightly in the world, Chapter 4 “Living with Bratinella.” This book is available at amazon

All the World’s a Stage

Scan_20150730In all the books I’ve read about Down syndrome, I have never seen anything about being dramatic, but I really believe that should be included in the description. Most of the people I know with Down syndrome are dramatic. They are animated, impish, and absolutely adorable actors and actresses. It is my theory that it is a trait carried on their extra chromosome, along with other traits such as being loving and cheerful. Kirstin has been a little actress all her life. When she was a preschooler, she would order french fries from the speaker on the car dashboard. At home one day, I came running as fast as I could when I heard her shrieking. What I found was Kirstin on a stool, holding a doll over the edge. Our cat was circling below, and Kirstin was in the process of rescuing the doll from the dangerous animal.

After Kirstin’s year in kindergarten, we took a trip to Hawaii. It was our summer vacation, but it was a little bit of a business trip for me as the Region Eight vice president for Jaycee Women. At the end of our vacation, there would be a meeting I was in charge of, but first we would have some fun. Kirstin is a great traveler and enjoys seeing new places. We have a picture of her on the trolley on Kauai, singing into her imaginary microphone.

It was at the Polynesian Cultural Center that Kirstin was really a star. We were making our way from island to island, around the exhibits, and at some of them, ladies were invited to come up and don grass skirts to try the traditional dances.  I participated in the Hawaiian exhibit, and Kirstin wanted very badly to join me. She was unsuccessful that time, but when we reached the Samoan Island, there was no stopping her. Before I knew it, she was on the stage. They put a skirt on her that was nearly as big as she was and tied just under her armpits. As the music started, a group of Scandinavian tourists arrived. I wondered what they thought as this tiny girl in a huge skirt stomped up and down on the stage, pumping her arms and shaking her head. It was scary and funny all at the same time.

As I kicked off my meeting on Friday night, I asked my children to provide the entertainment. Michael had acquired a set of poi balls, two balls attached to cords. The balls are swung in circles and crossed over in a sort of juggling style. He had developed some skill with them and performed for my group of ladies. Kirstin followed his act with her version of the hula. By that time she had her own grass skirt. Finally, they sang a song they learned on Kauai. As they sang “I’m a palm tree, I’m a palm tree, I’m a palm tree through and through,” they moved ever closer to their dad who was seated on the edge of the stage. When they reached the end of the song, “But I’d rather be a palm tree than a coconut like you,” they knuckled their dad on the head. It was adorably funny, and I was really impressed with both my children.

From: This Little Light of Mine, A woman with Down syndrome shines brightly in the world. This book is available on Amazon