Tag Archives: adults with cognitive challenges

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

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.