Tag Archives: Kirstin Heddens

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.


Who is Beth Anne Riley . . . Really?

Beth Anne finishedI have been fortunate in my life to know many people with Down syndrome. Any one of them could have been the model for Beth Anne. But as my daughter Kirstin says, “I would like people to remember that even though we look alike, we are all unique.” And so Beth Anne is her own unique person.

When I first began envisioning the plot for the second Handy Helper book, Seven is a Perfect Number, I knew that Melissa would be challenged by a new girl in town who would threaten her friendships with Laura and Amber. But when Beth Anne showed up, I was totally surprised. I hadn’t considered that the new girl would have Down Syndrome. And yet, there she was.

When I think about it now, I can see that Beth Anne is the perfect person to shake Melissa’s self-confidence. Beth Anne is the opposite of Melissa in so many ways. To begin with, Beth Anne is timid and shy while Melissa is bold and outgoing. Melissa is concerned about her appearance, wearing the latest clothing fads and then accessorizing to the hilt.  As Amber says, “She dresses to the nines” (sometimes the eighteens or the twenty-sevens). Beth Anne is happy to be dressed in comfortable clothes. And even though she rarely gets anything new, she is okay with that. When Beth Anne is going to church with her grandmother, Doris buys her a dress–one of the few dresses she has ever owned.

The biggest difference between Melissa and Beth Anne is how they treat others. Melissa is friendly and helpful, but often puts her own needs ahead of the people she is helping. Beth Anne reaches out in a loving way and gives fully of herself. The difference becomes obvious in the way the two girls respond to Mrs. Henry. Melissa sees her as a grouchy old lady who needs help but doesn’t appreciate it. Beth Anne sees a lonely woman who wants someone to care. While Melissa is busy dusting Mrs. Henry’s living room, Beth Anne sits on the sofa and gets Mrs. Henry to talk about her photo albums.  It is Beth Anne who coaxes Mrs. Henry out of her wheelchair so she can walk again.

Little by little, the Handy Helpers realize that Mrs. Henry is changing from a grouchy old lady to a sweet, kind friend. All of them know that it is Beth Anne’s influence that is bringing about the change–all of them except Melissa. But even Melissa can’t fight the obvious forever.

It is not until Beth Anne is rescued from the mountain, that her impact on the Handy Helpers becomes apparent to all of them. Beth Anne’s willingness to give of herself so completely, rubs off on each member of the Handy Helpers and is reflected in tiny acts of grace. Chris lets Elizabeth Sawyer win the Sunday school contest even though he has more scripture verses. Spike has been avoiding Connor, the little boy who tries to be like Spike. But in the end, Spike becomes his friend and even brings him to Melissa’s birthday party. Although Melissa had been trying to keep Beth Anne out of the Handy Helpers, it is Melissa who insists that the group won’t be complete until Beth Anne is the seventh member.

Like the Handy Helpers, I’m so glad that Beth Anne came to live in Bluesky. Our lives would not be the same without her.

The Handy Helpers book series is available at Amazon

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.

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.

Me and My Man by Kirstin Heddens

Scan_20141130David and I found each other at a Halloween dance. I was dressed as Dorothy Gail from Wizard of Oz. David was Captain Riker from Star Trek. He thought I looked really cute and I thought he was so handsome. We have been dating about ten years. I like to call David my man and he calls me his woman.

David and I have lots in common. We were my mom’s students. David was in her first class when she started teaching at Bradshaw Mountain High School. He was fourteen years old and I was only eight. He thought I was just a little girl. But when I grew up, he became my boyfriend.

We have different hobbies. David likes to play his Play Station. I like to sing and dance or read my Nook. We both like country western, oldies, and Disney music. David and I like to have peace and quiet at times. We like to watch TV. David and I collect cds and movies. David is a Diamondbacks  and Luke Bryan fan. Sometimes we listen to music together or go to movies. We like to go to the special needs dances every month. David and I like to kiss.

We are planning to get married. David and I will have our own house–It might be the house I own already or a different house. We will do our housework together. I’m the one who will do the cooking. David will set the table and help with the dishes. I will help David pay bills,  take his pills and handle his money. I’m going to retire from Costco when we get married. David already calls my dad–Dad.  My dad likes that.  We will go for walks and shop for food at Walmart or Albertsons.

I’m writing my own book series called snap singers. It is about kids with special needs who like to sing together and play in a band. Someday I hope my books will be published so everyone can read them.