Tag Archives: Down Syndrome

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

Scan_20141205 (2)

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

IMG_0895

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

Working Girl

Image 10

It’s five o’clock in the morning. I roll over in bed and remember that I am alone. Fifteen minutes later, Craig lies down next to me, fully clothed. He has just returned from the forty-five minute round-trip he makes each morning to take Kirstin to work. Her job in the bakery at Costco begins at 5 a.m. five days a week. Each morning Craig and Kirstin are up at 3:45, and by 4:30, they are on the road. This was our routine for the first six months that Kirstin worked at Costco. It was a miracle that she got that job in the first place. We weren’t about to mess it up.

After Kirstin had been working in the bakery for two months, Craig talked to the general manager to find out how she was doing. He said that she was not fast enough to meet the standard. They had decided to extend her probation period to 120 days, but he doubted that she would make it. He said that after that they would try her on some other jobs, such as folding clothes. If she couldn’t meet the standard there, they would have to let her go. It seemed that my worst nightmare was coming true.

I guess I forgot that this was Kirstin we were talking about. By the time she finished the first ninety days, she was meeting the standard and was off probation. She had made it over the first hurdle. At her first year anniversary, she was evaluated again. She had lots of room for improvement but was doing well enough to continue. She was given a raise to $10 an hour, but along with that came a new standard, sixteen boxes. This was a real challenge, but Kirstin was able to reach that one too.

Working in the bakery was hard work, but it was fun too. Kirstin’s coworkers accepted her as one of them from the start. They invited her to baby showers and going-away parties. They told her about their lives and their problems. Kirstin even went to a Country Thunder concert in Phoenix with Donna Rogers (her boss) and another coworker.

Even though Kirstin seemed to be doing well at work, in the back of my mind was still the thought that she might lose her job. Donna Rogers was transferred to Kansas City, and that meant Kirstin would have a new manager. This of course brought new fears. In fact she worked for several managers until there was a permanent one. Each manager had different ideas about how things needed to be done, and Kirstin constantly had to adjust. She had one manager who said, “There’s no crying in the bakery.”

Kirstin’s side of the story  I like to do my work every day, and I work hard at it. I like my boss, Kris. She helps me do a good job. I’ve had my job at Costco for a long time. That’s because I’m a good worker. I get a lot of compliments from the members. I care about all the people who come to my food court. I like to be helpful to people with disabilities.

There are some things I don’t like. I don’t like it when workers argue. I don’t like emptying the trash when it is heavy. But I do like getting paid every two weeks. I look at my pay stub on my computer to see how much money I make. I like getting benefits like health care and my 401k.

My advice to someone looking for a job is to 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.

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

Kirstin’s Group

Scan_20141115 (4)Other parents of children with Down syndrome have told me how their child talks to him–or herself. This seems to be a common trend. In Kirstin’s case, she perfected  it to an art form. Not only did she have an imaginary friend to talk to, she had an entire family she called “the group.” At one time, I believe there were seven members of her group. She carried on conversations with them, shared food with them, and took them everywhere she went. Going in her bedroom, she would hold the door open until everyone was in. Then, through the door, we would hear talking from many different voices. She never gave us much information about who these friends were. I did get a few names: Harry, Little Terry, and Big Terry. I was somewhat concerned about Harry when I learned that he had horns. But Kirstin assured me he was a good guy.

In a way, it seemed convenient that Kirstin always had friends. Her brother, Michael, is four years older chronologically, but if you consider maturity, there is an even greater age difference. Besides, being a boy, he had totally different interests from Kirstin. She was always busy with her own activities, happy with what she was doing, and never really alone because she had her group. It did cause her problems at school, when she would get so busy with her imaginary friends that she forgot to pay attention. More than once her teachers sent reports about Kirstin doing her own thing instead of what she was supposed to be doing. Eventually, she would do her work but in her own good time. One report read, “Kirstin is eager to please for most of her work. Sometimes she still continues to use her time for her ‘club’ activities. I insist she do her work, she gets mad and then does what I ask and usually does it well.”

Kirstin was approaching her twelfth birthday, and it seemed like a good idea for her to stop having imaginary friends. She would be going to middle school, and the kids might make fun of her. Besides, she needed to face reality. After a serious discussion about the group, Kirstin agreed that by her twelfth birthday, they would be gone.  And it seemed that she was true to her word.

It was a few months after Kirstin turned twelve that we were shopping in a fabric store. Kirstin was looking at the racks of fabric and talking incessantly to someone who wasn’t really there. I reminded her that she promised her group would go away.

“They did,” she told me, “but they’re here shopping with their mom.”

Today in private places like the bathroom, Kirstin can he overheard talking to someone, and I’ve watched her at work, whispering under her breath. She claims to have no memory of her imaginary friends, but I guess we’ll never know.

Kirstin’s side of the story:  I remember my imaginary friends a little, but I remember my real friends a lot more. At times I do talk to myself like other people do.

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

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

 

This Little Light of Mine

2012-04-08-1134-58_editedFrom This Little Light of Mine, A woman with Down Syndrome shines brightly in the world.

When Kirstin was three years old, her preschool teacher gave me a book to read. It was written by two psychologists who had a child with Down syndrome. They talked about how they placed his crib in just the right spot so that he would receive the most stimulation. Everything about his day was calculated to provide the best environment for him to develop properly. I thought about how we hadn’t done any of those things. When she was a newborn, we didn’t even know we should be doing them. Now she was three years old. Was it too late? When I reached the part about their son starting to walk at age three, I looked up at Kirstin. She was spinning around the driveway on her Big Wheel, happy and engaged in what she was doing. Maybe we hadn’t done everything just right, but we had done okay.

As with all situations we find ourselves in, there are blessings to go along with the challenges. While those with Down syndrome require special help, they also provide their families with special joy. I’ve heard it suggested that instead of Down syndrome, it should be called Up syndrome. Kirstin smiles most of the time and sees the bright side of every situation. She has the ability to spread happiness wherever she goes; it’s contagious. Her concern for others is genuine. There is not a phony, conniving, or distrustful bone in her body. This makes her more vulnerable, but it also makes her a beautiful example of how the rest of us should live.

A doctor can explain exactly how Down syndrome occurs, and I can understand and accept what he tells me. Still I do not believe it is a mistake of nature. God does not make mistakes. Kirstin is as she was intended to be. God has a purpose and plan for her, as He does for all His children. He sees her not as the world sees her but as His perfect creation.

KIRSTIN’S SIDE OF THE STORY: My mom asked me to tell you how I feel about having Down syndrome. I feel like I’m happy about it. I do have a problem with my knee. One good thing is being able to wear glasses, so I can see and do some reading. I feel I am special in my own way. I have some friends with Down syndrome. We do look a lot like each other, as if we are people who are related. Sometimes people call me by the wrong name. They think I am someone else with Down syndrome. I just go along with it, because I don’t want to hurt their feelings. That’s not my style. I would like people to remember that even though we look alike, we are all unique.

This Little Light of Mine is available at amazon

Kirstin two years later

kirstin bookThis month marks the second anniversary of This Little Light of Mine. I thought I would fill you in on what’s happened in Kirstin’s life since that book was published.

Kirstin has continued to work at Costco. This is her sixteenth year there. She is the assistant manager in the food court–a responsibility that she handles with her usual determination. Recently she had to help train a new manager. She was working with both the new and old manager. They were having trouble with something. Kirstin told them “Get with the program, managers!”

As always, Kirstin is constantly being recognized around town. We can’t go anywhere without someone coming up to her and telling her what a good job she does at Costco.  The joy she brings to these people is awe-inspiring. And she does it just by being who she is.

If you read This Little Light of Mine, you know that driving had resurfaced as an issue. Kirstin had a learner’s permit for two years, but was not able to get her license. When she applied for her third learner’s permit, she failed the eye test. I think maybe the person who was giving the test had read my book.

Kirstin continues to live in the mobile home that she now owns free and clear. Her grandmother moved into a nursing home in May. Kirstin plans and prepares her own meals and takes care of her home. As always she is organized and makes good use of her time. She budgets well and pays her own bills. I wish I did as well.

As you may remember, Kirstin is an avid reader. Currently, she is reading Jane Austen’s Emma. Jane Austen is my favorite author, but I think her books are challenging to read because of the language.  Kirstin is really enjoying it. Last year she read The Wizard of Oz–all of it. I bet you didn’t know that there is much more to the Wizard of Oz than what you’ve seen in movies. There are fourteen books in the series by L. Frank Baum. Kirstin read them all. That’s 1768 pages on her Nook. She can tell you more about the Wizard of Oz than you would ever wish to know!

In addition to reading, Kirstin always has a jig-saw puzzle going. She puts together 500-1000 piece puzzles in record time. On her days off she does her singing and dancing to one of her favorite albums–usually Reba McIntyre or Bette Midler. Sometimes she spends the night at my house. We usually play our card game called Pounce. It’s a cutthroat game based on Solitaire. Kirstin beat me four out of the last seven times we played.

You may remember from the book that getting married was Kirstin’s most important plan for the future. It still is. She and David have been together for more than ten years. I think I’ve run out of reasons why she can’t get married. So watch for a wedding announcement in the paper in the not too, too distant future.

This Little Light of Mine is available on Amazon.