Tag Archives: This Little Light of Mine

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

Living the life she chose

kirstin's new home“”Looking back on our lives, it seems we have come so far. Those limited expectations I had when Kirstin was born are long gone. Now I see a world not with limitations but only with possibilities and challenges for the future.”

“Throughout most of her life, Kirstin has walked a thin line between the world of those with developmental challenges and the world the rest of us live in. Over the years, that line has become blurred, and  more often, Kirstin has chosen our world over the simpler, safer world that could be hers.”

From This Little Light of Mine, A woman with Down syndrome shines brightly in the world.

“If I knew then what I know now, would I do things differently?” I’m sure we have all asked ourselves that question. Considering Kirstin’s childhood, I see that we raised her in a certain way. As much as possible, we encouraged her to participate with her non-disabled peers. She went to ballet classes and gymnastics. She was in Camp Fire Boys and Girls. She sold candy door to door and went to Camp Fire camp. At the same time, she participated in Special Olympics and special education classes. I guess you could say that we showed her both worlds and let her chose for herself.

Now that Kirstin is an adult, she sees choosing as her God-given right. She does listen to advice, but ultimately, she is the one who choses where her life will go. That’s why Kirstin works at Costco and lives in her own apartment. It is also why I’m sure that in her near future, she will get married. While Kirstin is making her own choices, she still needs our help. And so, we are there for her, but sometimes it’s not easy.

I see many of Kirstin’s friends who have chosen to live in group homes. They have an equally fulfilling life. They spend more of their time with their peers and less time with their families. In that way, they are more like others their age. They work at jobs they enjoy, volunteer in the community and have a variety of social experiences.

I sometimes consider that my life would be less complicated if Kirstin had made the other choice.  What if we had steered her in that direction instead of helping her become more independent? Without getting into the nature vs. nurture discussion, I can’t help but think it wouldn’t have made any difference. Kirstin has always had her own ideas about things. That’s true for most of the adults I know with Down syndrome.  They have made different choices, but the point is, they have been allowed to make choices.

When Kirstin was born, children with Down syndrome were being placed in institutions. Sadly, they were not allowed to chose for themselves. Today, there are so many opportunities for people with developmental challenges, and I see those opportunities broaden every day. But with so many opportunities, parents with small children who have developmental disabilities have an awesome job to do preparing their children for their future. Theirs is a challenging and sometimes frustrating road, but one that is blessed with lots of encouraging experiences.

I am a fan of Doctor Phil. I watch his show as often as I can. I have seen many dysfunctional families verbally duking it out on public television. Their problems vary from teens who are addicted to drugs or alcohol or sex, to out-of-control children who have been overindulged. I am yet to see a family on his show who are there because they have a child with Down syndrome. I’m sure most of those families have pleasant, enjoyable lives.

To answer my question, would I have done things differently, I’m pretty sure I would not. Watching Kirstin mature and take on adult responsibilities has been one of my great joys in life.

 

My Empty Nest

 

 

back cover pictureEvery challenge has its rewards, and every opportunity has its tradeoffs. One of the tradeoffs I had counted on was that Kirstin would always be with us. Michael was an independent young man at an early age, playing with his friends all day. When we moved to Prescott Valley he became an adventurer, exploring the creeks and hills around our town. In high school, now a licensed driver, he spent time with his buddies or worked at various part-time jobs.  He no longer accompanied us on family vacations.  After high school, Michael took a job with the U.S. Forest Service as a firefighter. At first he remained in Chino Valley, but he was soon transferred to other ranger stations in remote areas of our large state. Eventually, he got married and became a parent himself. He had gradually become less and less a part of our daily lives, but Kirstin was always there. She was with us every day and everywhere we went. Other parents had to prepare for having their children move away, but not us. While we knew Kirstin would have a life of her own in some ways, I always assumed she would continue to live with us.

The empty nest idea didn’t fully hit me for a few months. It was May and it was Mother’s Day. On any other Mother’s Day, Kirstin would have been parked outside our bedroom door, waiting for us to wake up and open the door so she could rush in present and card in hand. But on this particular Mother’s Day, there was no shuffling noise coming from under our door. It hit me like a ton of bricks. We were empty nesters. That was when the tears came.

As parents, Craig and I are as proud of Kirstin and her accomplishments as we are of our son Michael. They have both made their own way in the world as strong, successful, independent adults. Kirstin knows her own mind and will stand up for what she thinks is best for her (even to her overbearing mother). Letting go is a very difficult thing to do, and I don’t think we have fully mastered it yet. Maybe we never will. But Kirstin is always patient with us and helps us learn to be better empty nesters.

Kirstin’s Side of the Story:  I like being independent. Growing up means having a lot of responsibilities. I budget my money carefully. I have lots of bills to pay. It is not always easy being an adult. I’m a good cook. I keep my house clean. I am a good shopper.

All children have their families, even when they grow up. My mom and I play Pounce together, cook together, and spend time together. We don’t see each other every day, but that makes it more special when we are together.

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

It has been over eleven years since Kirstin moved out of our home and into the mobile she shared with her grandmother. During that time, Kirstin has enjoyed her independence and grown into a remarkable adult. When we were helping her make decisions about what to do with her mobile home, there was a part of me that wanted so much to have her live with us again. But that wasn’t my decision to make. Kirstin has her own plans and dreams. Like all of us, she is working to make them come true. My role is to support her in this as I have always done.