Tag Archives: Down Syndrome

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

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.

“One We Are the Girls”

Scan_20150316The mother-daughter relationship is a special kind of phenomenon that is difficult to explain. It is a relationship that changes over time but remains an important part of a woman’s life. The father-daughter relationship is also wonderful, but mothers and daughters can share a kind of intimacy that father’s can’t easily grasp.  With Kirstin and me, we have shared a special bond that I believe began with caring for Kirstin in the hospital when she had meningitis. It was strengthened further during the time we spent together when she was in preschool. There has never been a time when Kirstin and I haven’t been friends. I know that many mothers and daughters go through rough periods, when they struggle to define their respective roles. Kirstin and I struggled a little, but I consider it one of the trade-offs that her teen years were pleasant ones. This is especially  amazing when you consider that besides being her mother, I was her teacher during four years of high school.

Craig and Michael always seemed to be busy with work or scouting, doing guy things. So Kirstin and I spent a lot of time together. We played games and Barbies and read stories. We developed out own cheer. It was adapted from one of the cheers performed at the football games for the high school where I teach. It went, “One, we are the girls. Two, we do it right. Three, we are number one . . . We are the girls.”

Each summer, the local movie theater had a weekly children’s movie. This became our summer ritual, and every week Kirstin, Sherry Baby (her Cabbage Patch doll) and I would go to the movies. Kirstin and Sherry always wore matching outfits, and the workers at the theater would watch for us and say, “Here they come.” Due to Kirstin’s maturity level, she enjoyed the type of movies they were showing, so we continued with this routine much longer than most moms and daughters would. We called it our “girls’ day out.”

Kirstin’s side of the story:

I like spending time with both my parents. Sometimes we invite our guys, Dad and my fiancé David, to come along. We go to the movies and lunch on a double date. Sometimes we go hiking or bowling. I look forward to going on a girls’ day out with my mom. In fact, we had one today. We went shopping at the mall. I bought some cute clothes. Mom helped me pick them out. We went to lunch and then to Walmart to buy my groceries. I hope I never get too old for a girls’ day out.

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

 

The not too easy reader

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Friends have asked me how Kirstin learned to read. I tell them she learned in school like everyone else, but there really is more to the story. Some of the ladies at our church wanted to give the credit to Kirstin’s Sunday school teacher. All of a sudden it seemed that Kirstin was able to read the little Sunday school books. Kirstin’s teacher, Mrs. Mobley, was somewhat upset with this version of the story, and rightly so, as she had been working with Kirstin for two years. Of course, Mrs. Mobley deserves the credit. She had a wonderful reading program called Edmark and all the faith in the world that her students could learn to read.

Much of the credit goes to Kirstin herself. I like to tell people that Kirstin learned to read by shear force of will. As her skills improved, she read every word she saw. This meant that she read all the credits at the end of a movie or television program. If we ate in a restaurant, Kirstin had to read the entire menu. Once again we found ourselves being held hostage in restaurants. Kirstin read signs, billboards and posters.  She read and read until she could read almost anything.

Reading has been an important part of my life since I was a small child. Now that I had a daughter who loved reading, I wanted to share my favorites with her. I enjoyed Beezus and Ramona, and all the Judy Blume books. Doctor Doolittle was also one of my favorites. Kirstin wanted nothing to do with my suggestions. Instead, she discovered her favorites on her own. Her ultimate love was The Baby-Sitter’s Club. One after another, she read them as fast as they were being published. The characters in The Baby-Sitter’s Club became real people in our household. Kirstin told us about them in great detail. One day I noticed Kirstin doing something sneaky, so I thought I had better check it out. On one of the pages of The Baby-Sitter’s Club book there was an advertisement for babysitting services, complete with the phone numbers of the club members. Kirstin was on the phone trying to contact someone in the club.

In 1996, Ann Martin came to Prescott for a book signing. We took Kirstin and her friend Angela to the bookstore where it was being held. There was a very long line that encircled the building, and we waited for hours. Kirstin had difficulty find a new book to buy for Ms. Martin to sign, because she already had most of them. Finally, it was her turn. Maybe it was my imagination, but it seemed that Ms. Martin spent a little more time talking to Kirstin than she did with the others. It is one of Kirstin’s fondest memories.

Kirstin’s Side of the Story: I read every day. I like to read books that are exciting or funny. I like to read love stories because I’m in love with David. I do read history, romance, scary books, and mysteries. The characters in the stories make mistakes and learn from their mistakes. I learn from their mistakes too.

If I couldn’t read, my life would be boring. I would not have been able to read The Baby-Sitter’s Club or the Avonlea books. I have to do some reading at work and in church. If I couldn’t read, I wouldn’t be as independent, because someone would have to help me. I have been able to read Facebook and Livemail, so I know what my friends are doing. I sent my boss a music video on Facebook. I had to read to figure it out by myself. My mom said she doesn’t know how to do that, but I can because I can read.

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.

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

An Interview with the Handy Helpers’ Number One Fan

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RMH: I heard that you are an avid reader. What are some of the books you like to read?

KIRSTIN: I like Anne of Green Gables, Rizzoli and Isles, Princess Diaries, and Janette Oake. When I was a kid I liked to read the Babysitter’s Club and Sweet Valley High. I’ve been rereading some of those lately.

 

RMH: Why did you choose to read the Handy Helpers books?

KIRSTIN: The main reason is that my mom wrote the books. I started reading the chapters as she finished them before the books were even published. I’m also her advisor so I have to read the books to give her advice.

RMH: Which book did you like the best?

KIRSTIN: Seven is a Perfect Number. I liked that book because there is someone with Down syndrome in it and I like that character. She kind of like me but different in some ways.

RMH: What was your favorite part?

KIRSTIN: I liked the part where Beth Anne becomes a Handy Helper. Melissa was jealous of Beth Anne and didn’t want her to be a Handy Helper. In the end, Melissa learned that she was wrong about Beth Anne.

RMH: Who’s your favorite Handy Helper?

KIRSTIN: Beth Anne is my favorite character. She is sweet and kind to everyone.

RMH: Who’s your favorite senior?

KIRSTIN: My favorite senior is Mrs. Henry. She is grouchy at first but after she spends time with Beth Anne she changes to a nice, sweet person.

RMH: If you could hang out with one of the Handy Helpers, who would it be and what would you do?

KIRSTIN: I would like to hang out with Amber. She has a special bond with her mom like I do with my mom. I would hang out with her at the mall.

RMH: What do you think readers will gain from reading the Handy Helper books?

KIRSTIN: They will learn that we should all do our part to help others. When the Handy Helpers have problems they get help from their parents or from the seniors. We all make mistakes. We have to learn to overcome them.

RMH: Would you recommend the Handy Helpers books to everyone or is there a certain type of person who would especially enjoy reading them?

KIRSTIN: I recommend the Handy Helpers to everyone who wants to read a good story.

RMH: Have you previewed any of the chapters in the next Handy Helper book, Not a Happy Camper? If so, do you want to give away any surprises from that book?

KIRSTIN: Yes, I have. Here are some surprises. Gus becomes a foster parent for three children.  Beth Anne makes a new friend. Spike gets to be a Handy Helper again after his big mistake in book three.

The Handy Helpers book series is available at Amazon