Sunday, December 27, 2009

TO: wwwwwwwwwww FROM: wwwwwwwwwwww

Kurt's strong will and mind of his own has been a blessing. Like the Energizer Bunny, Kurt keeps going. As a little boy, he played while his hands twitched and his head bobbed due to hundreds of myoclonic seizures. When, in 1999, his legs became paralyzed from seizures, he persevered through hours and days of physical therapy to walk again.

That same strong will can be a curse, as far as parenting goes. Kurt doesn't settle. He stubbornly knows what he wants and will not be persuaded otherwise. As a caregiver, sometimes that drives me crazy. Christmas shopping with Kurt was one of those times.

My mom took Kurt to three stores so he could purchase a snow scraper for his brother, Kelly, who had broken the one he used for his Blazer. A scraper's a scraper, right? Kurt didn't like the ones at Shopco or Walgreens. However, as soon as he saw the scraper at Ace Hardware with an extendable yellow handle, he knew.

My own shopping experience with Kurt was similar. I had to take him to two stores to find the right DVD for Keith's fiance.

While this made shopping more time-consuming, I appreciated his newfound excitement for gift giving. Past Christmases had always been about what he would receive. And when someone opened a package from Kurt, he would deny even buying it.

What really clenched the change in Kurt from recipient to gift giver was his determination to wrap the gifts himself, struggling to tear the tape from its dispenser and place it on the wrapping paper before the sticky side got all mangled. Most notably were the gift tags. Kurt insisted on filling out each one, although he only pre-writes. He scribbled sloppy 'w's from left to right, top to bottom until the tag was filled to his liking.

Christmas morning brought chuckles from everyone when they "read" the gift tags. Kurt sat on the couch and smiled.

Sunday, December 20, 2009

Shopping With Kurt - Oh My!

Kurt finished his Christmas shopping this week. I had a doctor's appointment on Wednesday, so my mom offered to take Kurt shopping since they would have a couple of hours together anyway. He was to buy his brother Kelly and my gifts.

"We got it done," she said, looking dazed with a frozen smile on her face when I got home.

In years past, shopping with Kurt had been difficult, to put it mildly. He didn't want to buy presents for other people, so getting him out shopping was as fun as shoveling the driveway after a heavy snow, and as tiring. Once at the store, Kurt would become obsessed with an item he found, like a Legos set or a fire truck, and would insist on buying that for himself. Sometimes, prying the object of his desire out of his hands and leaving the store with my head exploding was all I could do.

Kurt's shopping skills have improved over the year. He has learned that he doesn't have to buy something for himself every trip to a store. And for the first time, he wants to give gifts. However, there are still challenges.

"Kurt saw this winter scarf and wouldn't look at anything else," Mom said.

"It was striped in fuchsia, orange, and turquiose," she said. "And he wanted to buy you the matching hat, which had a bill and ear flaps."

They put the set in their cart and browsed in Shopko for Kelly's gift. "I figured I could change his mind if we saw something else," Mom said.

That worked and I'm not getting the scarf set. I really wouldn't have minded. Knowing Kurt picked out my gift, whatever he thought I might like, brings a smile. I'm grateful he has come so far.

I'll tell you about his purchases for Kelly and when I took him shopping in another post.

Tuesday, December 8, 2009

7 Signs Kurt is Growing Up

How does a person with a cognitive disability mature? The same way everyone else does. Only slower, at their own pace. That is something I am learning as we go. Here are some signs:

7. One of Kurt's chores is to unload the dishwasher. When we got home one afternoon, Kurt got right to the task without being asked. (His brothers don't do that.)
6. Instead of hiding his head with the brim of his hat, he holds his head up high and says "Good Morning" when he arrives at his destination.
5. He introduces us to his friends.
4. Normally, I spend an hour coaxing Kurt out of bed in the morning. "Get up. Take your medicine. Get dressed." Reminding him over and over. For the past two days, he has done this routine without being told.
3. He takes pride in his responsibilities. When I pick him up from Community Homestead, he won't leave until he has finished his project.
2. He can walk between the different houses and the Community Center at Community Homestead, without assistance, and he gets where he is supposed to be.

And the number 1 sign:
1. He asked for a suitcase for Christmas - and No Toys!

Sunday, November 22, 2009

All I Want for Christmas

I hate listening to ads on the radio, so whenever I'm driving and one comes on, I switch to one of three Twin Cities stations. That happened last week Tuesday, when an ad came on 97.1 and I tuned into 102.9. To my surprise, they were playing Christmas music. A little early, I thought as we drove to Community Homestead, but Kurt was enthralled. This is Kurt's favority holiday, and combine that with his love of music, and he must know every carol ever recorded.

"All I Want for Christmas is You" by Mariah Carey came on the radio while we cruised along Highway 35, just north of Somerset.

"She doesn't want any presents," Kurt said.

Deep in my own thoughts, I looked over at Kurt, "What?"

He nodded his head towards the radio and repeated, "She doesn't want any presents for Christmas."

Turning back to watch the road, I listened to the lyrics, which I hadn't paid much attention to until Kurt brought me back to the present.

Mariah was singing:
"I don't want a lot for Christmas
There's just one thing I need
I don't care about the presents
Underneath the Christmas tree
I don't need to hang my stocking
There upon the fireplace
Santa Claus won't make me happy
With a toy on Christmas day
I just want you for my own
More than you could ever know
Make my wish come true
All I want for Christmas is you."

Kurt completely missed the romantic nuance, but I like to follow his line of reasoning. He can't believe someone wouldn't want presents.

On Wednesday, the Mariah Carey song came on again. We were a little farther up the road, having left earlier than the day before.

"If this song was in my brain," Kurt said. "I'd still be hoping for presents under the tree."

Thursday, November 12, 2009


I have waffled back and forth on getting the H1N1 vaccine for Kurt. When I read that the vaccine has ingredients that have not been tested, I thought no thanks. When I read that the government relieved the drug companies from being liable for harm, I thought no thanks.

When I hear warnings on the news that the flu is worse, perhaps fatal, for someone with underlying medical conditions, that's when I freak, especially when the news story used epilepsy as an example of an underlying condition.

Kurt is medically fragile. He has, in the past, had multiple seizures from illness. Pneumonia a few years ago caused seizures and dehydration, and a hospitalization. And the worst case was ten years ago when a nasty virus caused status epilepticus, a life-threatening situation when the brain is in a state of persistent seizure.

So I called Kurt's neurologist and asked for his advice. He said get the vaccine. Of course, when I called our clinic, the vaccine wasn't available to the general public in our area.

Then I went back to, okay, maybe Kurt won't get it. Or, since he received the seasonal flu vaccine, maybe he'll have a mild case. Kurt is healthier now. He had a cold at Halloween and got over it in 4 days, without any seizures.

I follow the Dream Mom blog,, about her Dream Son, a medically fragile teen. He has intractable seizures and other conditions. She explained that her son is severely disabled. I read that her son has the H1N1 flu and is in PICU, with a ventilator. Having been in that situation with Kurt ten years ago, my heart goes out to them. It is traumatic, and life or death.

These are the cases that scare me. I hope we can get the vaccine soon.

Sunday, November 1, 2009

Trick or Treat

Kurt missed the Bridge Halloween Party on Saturday because he had a head cold. He was very disappointed, but we had Trick or Treating.

I think all kids have trouble when they are getting too old to Trick or Treat. I remember when Kelly wanted to go “one more year” every year. We took Kelly when he was 11 and Kurt at 14 for the last time. I walked around the neighborhood with the boys. When we got back to the house and the boys dumped their candy out on the counter, Kurt had about half as much as his brother, even though they had hit the same number of houses.

I immediately thought of Charlie Brown and the rocks.

Since Kurt had trouble getting “Trick or Treat” out in time, he most often remained silent at the door. So maybe the adults thought he was rude, or because of his height, they thought he was too old, or a combination of both. I’ll never know, but that’s the year I decided to make the transition for both of them.

Kelly ended up going one more year with his friends.

I had a plan for Kurt. He would hand out the candy to the kids when they came to our door. Oh, what a process that became. He wanted to do it all by himself, but was very slow. He insisted on locking the door after each group. So the whole routine consisted of unlocking the door, opening it and the screen door. Sometimes he talked to each one and asked about their costumes. Then he would pick out which candy he wanted to give out of our orange candy dish.

Our dish is actually an orange bucket. When we moved to River Falls, the Welcome Wagon lady came around and gave us gifts, one of which was this bucket. It wasn’t very big or sturdy enough to carry around with water to mop the floor, for example. So for some reason unknown to me now, we threw in a package of snack size candy bars and put it in the cupboard. And ever since, if you want to find some candy, just look in the orange bucket.

Starting with last year, Kurt really owned candy duty for the first time. Since he had planned to go as a Coca-Cola driver (Paul’s former job) to the Halloween party, he donned one of his dad’s uniforms and sat in the darkened living room, watching out the picture window at the shadowy figures walking the street. As soon as they started up our drive, he shot into action, opening the door and dropping treats into their bags.

His Halloween transition from kid took some time, but it’s really worth it to see him enjoying his adult role.

Friday, October 23, 2009

What Does Kurt Want to be for Halloween?

Halloween is a week away and Kurt is eagerly anticipating the upcoming party hosted by BRIDGE for Youth with Disabilities. Most of the young adults and many of the parents will wear costumes.

“What do you want to dress up as Kurt?” his grandma asked.

Kurt silently looked ahead, watching traffic as she drove him to work one morning.

“A police officer? Fireman? Vampire?” she said.

No answer.

“A construction worker? Super hero? Pirate?”

More silence. Finally, Kurt had his answer.

“A golf cart,” he said.

Tuesday, October 6, 2009

When will Keifer be home?

Keith was home last weekend with his fiancĂ© Jen. He’s in his fifth year at UW-Platteville in Southern Wisconsin and will graduate in December with an Electrical Engineering degree. Jen finished school with a degree in Business Administration. The couple got engaged over the summer. I snapped this picture of them in our sunroom.

Keith lived at home this summer, completing an internship in Minneapolis. Kurt liked having him home. He asks me, now that his brother is back at school, “When will Keifer be home? Next week?”

The calendar is not Kurt’s strong point. He knows the seasons, the difference between night and day, that one day follows another, and weekends are “stay home days.”

When Keith will be home is getting harder to explain. He will visit at holidays, but has an apartment with Jen. After graduation, he won’t be moving back into his old room. That time has passed.

That’s what Kurt and I talked about Sunday night.

“Why did Keifer go back to school?” Kurt said.

“He is finishing classes and then he’ll graduate this winter.”

“And move back home?” Kurt said. That always seems to be prominent in his mind.

“No, he has an apartment. He’ll get a job and maybe have to move to another city, but he won’t be moving home.”

“Why won’t he move back home?” Kurt said.

“Because he is grown up.”

What have I stepped in now? I tell Kurt all the time that he is a grownup. Does he wonder why he lives at home? Will he ask to move out?

My heart suddenly felt squeezed by a vice grip, thinking of Kurt not living at home with us. I have been protecting him for 20 years.

On the other hand, this could be the beginning of a new step. With Keith as his role model, Kurt will be exposed to what kids do when they grow up. They move out and have their own lives.

That’s what Paul and I want for Kurt. I will have to take the next step too, in letting go.

Letting go is hard.

Saturday, September 19, 2009

Just Another Day at the Farm

I got to Community Homestead early on Friday to take a walk and possibly some pictures. Here’s one of the grapes in the vineyard. All the vines were heavily loaded and I couldn’t believe the fragrance in the air. Each breath was like drinking juice. I could have spent the afternoon breathing.

After soaking in that pleasure, I traipsed down the hill to pick up Kurt at the garden. I found him in the bed of a pickup truck with Kaye, Oscar and Dustin and surrounded by just-harvested soybeans. Two more special needs adults, Mary and Scott, were sitting in chairs behind the truck. All of them were pulling the edamame pods off the plants.

I’m in awe each time I discover Kurt working! This is the young man who, most often, refuses to do his chores at home. And here he is, having fun with his friends, spending three entire days each week working! I talked to the crew for 10 minutes, as my son continued his task. I finally told him to finish the plant he was stripping and then we would go. Otherwise, I think he would still be working!

When I watch him at Community Homestead, I think of the patience they’ve had over the six years Kurt has been volunteering. He is a productive member of their community. He has gained so much in return – friends, self-esteem, and abilities.

Tuesday, September 8, 2009

Visit Community Homestead

Saturday September 19, 2-6pm


Community Homestead Community Center

519 280th St Osceola, WI 54040

Tours, hay rides, crafts and produce for sale, potluck meal-bring a dish to share.

Come meet the community!

Friday, August 28, 2009

Ever-Expanding World

Kurt has always been one to like having his family close. He worries about “Keifer,” the nickname that stuck on his older brother. “When will Keifer be home?” Kurt has asked numerous times this summer. Keith has been home from college doing an engineering internship in Minneapolis. When he goes out at night or is away for the weekend visiting his fiancĂ©, Kurt worries.

Our college student left last weekend for UW-Platteville. Now Kurt tries to understand the nebulous calendar. He gets that each sunrise is a new day, but how many of them before Keifer returns is vague. “Sometime this fall,” I say, knowing that Kurt has a sense of seasons, but it really just stops the question until the first leaves turn color and begin to drop.

Keith will graduate in December, he has an apartment with Jen, and he started cleaning out his room for good, so we’ll have a guest room. How will Kurt react to his brother truly leaving the nest?

His younger brother Kelly is another source of concern for Kurt. Kelly has been his transportation this summer. After being so proud to introduce Kelly to his friends for the last couple of months, soccer practice started a few weeks ago and the two brothers are spending less time together. “Is Kelly at soccer?” Kurt will ask when I pick him up from Community Homestead. He’s disappointed to see me.

Kelly starts his senior year of high school in a few days.

What does Kurt think? Does he imagine where everyone is each day? He has ridden in Paul’s semi and he visited my office once. He has been to the high school and also to Platteville Keith’s first year. Does Kurt keep those visions in his memory?

Paul and I, and Kurt’s brothers have a large world at our convenience. We drive ourselves anywhere we want to go. We have access to the world through the internet, connecting with friends when we want, and shopping is limited only by our funds. Kurt’s world is much smaller. Socializing, shopping or any trips outside the home are up to someone other than Kurt. He has to rely on us.

Kurt’s world has been limited by his seizures and his disabilities. Yet, there is growth. He leaves home five days a week. Some days at Community Homestead, he’s washing the newly picked lettuce or pushing the wheelbarrow full of weeds to the compost. At the day program, he’s playing basketball with his friends at the YMCA and buying groceries to make a snack. He’s gathering eggs from the hens with his friend Nic when he stays with Nic's family. "That's my brother," Kurt tells the people around him on the bleachers when he sees Kelly on the soccer field. He’s buying CDs at garage sales and peanut butter cup blizzards at DQ.

Kurt’s world is expanding. Maybe, just maybe, that will help when his brothers’ worlds go far beyond his grasp.

Thursday, August 20, 2009


Kurt wore his hat. When he tilted his chin down, the brim hid his eyes from public view. He tried to suppress a grin and when that failed, covered his mouth with his hand. I still got a glimpse of the sparkle in his eyes.

Paul, Kurt’s brothers and I were seated two rows back from the stage at the Bridge Players performance “A Night at the Movies.” Kurt was in the back row on stage, dressed in a Ghostbusters t-shirt, with the familiar “no ghosts” symbol emblazoned on the front. Other members of the cast included a Dorothy, a cowardly lion, a boy in a white-disco-suit, Danny and Sandy from Grease, and a staffer playing Uncle Fester, to name a few.

Kurt attended rehearsals all summer when he met his friends at Bridge for Youth with Disabilities. He’s been talking about the performance for over a week, asking Keith and Kelly if they would attend, asking when he could wear his Ghostbusters shirt.

The performers signed to “Somewhere Over the Rainbow,” accompanied by Judy Garland played over the stereo system. They waved animal puppets to Dr. Dolittle’s “Talk to the Animals.” They waved scarves to “We Go Together” and discoed to “Stayin’ Alive.”

Everyone participated in each song, but each person was a central player in at least one number. Kurt’s was “Ghostbusters.” Several cast members, including Kurt, waved homemade ghosts on poles. At the end of the song, 3 ghostbusters came out and chased 3 ghosts around the audience. Kurt was one of the chasees. He loved it!

The players finished with a rap song that led them out into the foyer, where they shook hands and accepted congratulations from their families. We were to enter another room for refreshments and I asked Kurt if he was coming too. “No, I have a crowd,” he said, referring to the remaining audience to greet.

When he joined us for bars and lemonade, Kurt brought Jen, aka Dorothy, to meet his family. Kurt added, “I’m having a party!”

That's all I want. For Kurt to have opportunities like every one else. Thank you Bridge!

Saturday, July 18, 2009

A Question for You

A thought-provoking question was asked in Table Topics at my Toastmasters club on Thursday. Table Topics is practice in impromptu speaking, a great skill to have at business meetings and in situations when you want to make a good impression. For example, as a writer, I’d like to feel comfortable and come off as intelligent if I were to meet an agent or publisher.

The question asked was: “When life threw you a curve ball, what decisions did you make that you now regret?”

If I had been called upon to answer, this is what I would have said:

One of the biggest curve balls in my life was having a son with epilepsy and special needs. That change has not come easily for me. I grieved the loss of my dreams for my son. And I’ve also felt sorry for myself many times since Kurt developed epilepsy 17 years ago. Sorry that my life didn’t turn out as expected.

When Kurt was having so many seizures back when they started at three-years-old, there wasn’t much time for girls’ weekends. Leaving Kurt plus his brothers and Paul would have induced waves of guilt. So I lost touch with friends.

High school reunions came and went without Paul and I. Sharing our hardships with others didn’t feel right, so I let the connections wither. I like to share good news, not bad, and there was a lot of bad for the first seven years after Kurt’s diagnosis.

One day earlier in the year, an invitation to our 30th high school reunion arrived. I tossed the event back and forth in my mind, discussed it with Paul, and we decided to send our RSVP.

A couple of weeks before the dinner, I got a call from Debbie, a dear friend. She invited me to her cabin and was also inviting another dear friend, Kori, who I had not seen for years. Again, I had to weigh the guilt, who would take care of Kurt while I was gone? We had made arrangements for the weekend, but now I had an extra 24 hours to throw in. We don’t leave Kurt at home alone for safety reasons. He also needs medicine three times a day, which someone has to get ready and make sure he takes. I would be leaving this chore to Kurt’s 17-year-old brother. Talk about guilt!

However, I said “Yes!”

I spent a precious 24 hours with my two friends. We talked, laughed, cried, and shared our stories. I found out that every one has been thrown curve balls. I am not alone.

A week later, I am still feeling that warm glow of friendship. I didn’t know how much I needed the connection with friends who really know me until it came back into my life.

So the decision I regret is that I didn’t stay in touch with dear friends.

What decisions have you made that you now regret?

Tuesday, July 7, 2009

No Frustration at the Pig Roast

A couple of Saturdays ago, Kurt, his dad, grandma and I went to the annual pig roast fundraiser at Community Homestead, ( a non-profit rural community living and working with people with special needs. We’ve been hitting this event for six years, since Kurt was 14.

Our first taste of the farm was back then, as Kurt and I spent one afternoon a week volunteering in the work groups. I learned how to make drip candles and Kurt helped in the chicken barn or with making stained glass art.

Attending the pig roast in previous years was taxing. We’d coax Kurt out of the van, promising the petting zoo. We’d walk around and seek out some of the people we knew, but Kurt would hide his face. At the buffet line, (pork, homemade sauerkraut, new potatoes, a lettuce salad picked fresh from their garden, other sides, and a table of home baked desserts) Kurt would hold his plate just enough not to drop it and complain about anything we put on his plate. Once back at the van after we ate, Kurt wouldn’t get in. Yikes! It was a frustrating, tiring day (and we were only there for a couple of hours).

Oh, the change this year!

The pig roast was on his mind all week. “Can I bring the movie camera?” Kurt said. Then he’d go on about his friend Hillary or something Mark said.

On that afternoon, instead of being the shy, unsocial teen, Kurt said “Hi” to all his friends and even introduced us to people he didn’t know! We watched him eat a full plate of food. Then he gave us a tour through the flower and vegetable gardens, and the orchards.

Not only was it great for us to see Kurt maturing, the event raised $3000. The money will be used to install the kitchen in the new community center.

Thursday, June 18, 2009

10th Annual
Pig Roast

Folk Dance

Community Homestead

Community Homestead is a non-profit organization living and working with people with special needs.

Saturday, June 27
501 280th St.
Osceola, WI

Tickets: $12 for adults, $6 Children 6-12 years, FREE for 5 years and under.

Organic food - Live music - Raffle
Horse and Carriage Rides - Vegetarian alternative, buffet served between 5-7pm.
Children's activities.

Kurt works in the garden all summer at Community Homestead. He has made many friends there and enjoys his job.

Sunday, June 14, 2009

The Next Step

I dropped the paperwork off last Wednesday so Kurt could begin attending the day services program at BRIDGE for Youth with Disabilities. The packet of paperwork was about an inch thick. Most of the questionnaire had to do with Kurt’s abilities, likes and dislikes. For example, I put pizza at the top of his favorite foods list. Some of my answers would be used to develop goals for Kurt, so he could make progress on social skills or telling time, for example.

We let Laurie go last week. She had been Kurt’s aide for four years, since I began working. Kurt was home with her three days a week and spent his other two days working at Community Homestead (CH). Laurie used to go to CH with him, but recently decided not to do that anymore. Her decision was the catalyst for change. Now was the time to help Kurt be less dependent on one person and more active in the community.

For the summer, Kurt’s younger brother, Kelly, will be helping Kurt and driving him to his activities. He’ll be working at Community Homestead three days a week and going twice a week to Bridge. This will give him more time with friends and allow him to be more active.

In six months or so, Kurt will go to CH four days a week, and then five some time next year. Eventually, when Kurt is ready, and CH has an opening, my son will leave home.

Monday, June 1, 2009

Water Balloons Among Friends

With red squirt gun in hand, Kurt sprayed water down the pine tree's trunk. He would sometimes dig out old toys, as he did now, while we camped. He easily entertained himself with collecting kindling, tending a fire once his dad got it going, and playing with small construction vehicles. Although he is twenty, developmentally his skills ranged from five to teen.

That made it hard for Kurt to socialize. We found some activities where he could join in with peers: challenger baseball, therapeutic horseback riding and his twice weekly work at Community Homestead.

While sixteen-year-old Kelly usually brought a friend or two on camping trips (this time, two), Kurt didn't have someone to bring.

Meanwhile, I found a bag of water balloons and set them on the table outside. Maybe the boys will use them.

Kelly and his guests sauntered across the grass to our campsite after their swim. They threw their towels over the clothesline, and plopped down in chairs. Thomas saw the balloons.

“Oh!” He grabbed them and ran to the water faucet.

Pretty soon, all three teens were having a water balloon fight, with round wet spots appearing on their t-shirts. Kurt joined in with his squirt gun, laughing and running along with them.

Kelly and his friends decided to fill several balloons and sneak up on some girls they knew. They invited Kurt. Off they went.

I smiled, grateful they had included Kurt.

When they came back, Kelly said, “Kurt giggled and covered his mouth the whole time we were sneaking up.” He smiled. “And then he squirted me!”

Kurt laughed.

For me, this was the highlight of the weekend.

Wednesday, May 20, 2009

Author Appearance - Yea!

Come celebrate the accomplishments of our extraordinary kids. Hear Kurt's inspiring story written by Bridge parent Donna Karis, one of the heartwarming essays by parents of special needs children in A Cup of Comfort for Parents of Children with Special Needs, (May 2009; Adams Media).

Saturday, June 13
BRIDGE For Youth with Disabilities
at First Presbyterian Church
1901 Vine Street
Hudson, WI

The national Cup of Comfort series is celebrating the differences in our extraordinary kids. Come share the big and small accomplishments of your kids. Learn about the benefits of sharing your stories. This will be Donna's first public reading. The Cup of Comfort book will be available for purchase, and the author will sign copies for attendees. A portion of the proceeds will be donated to Bridge.

Saturday, May 9, 2009


Nearly 20 years ago, Paul and I took three-year-old Keith and one-month-old Kurt camping. In a tent!

“You don't have to do anything,” Paul said. “Just take care of the baby.”

He convinced me. Keith was devoted to his dad and “helped” him set up camp.

We crawled into our sleeping bags that first night, with Kurt wrapped up in his portable bassinet. The temperature dropped to 45 degrees. I woke, it seemed like every hour, worried that Kurt would be freezing. I moved his bassinet between Paul and I to give him more body heat. I touched his cheek and watched him breathing. He was warm and comfortable.

Early morning, sounds of Kurt cooing woke me. Dawn brought sunshine through the trees nearby and shadows of leaves danced on the tent canvass. Kurt was mesmerized by the visual display. His eyes were wide, and his pudgy arms and legs wiggled with excitement, all the while cooing his pleasure. I laid beside him, silent so I wouldn't disturb his reverie. An hour went by before Kurt decided he was hungry.

Paul kept his word. He took care of everything, with Keith at his side. I sat in a chair and took care of Kurt.

Spring weather has called Kurt to camping every year since.

Sunday, April 26, 2009


Girls were at our house last night. A blonde and a brunette, wearing slinky gowns. One didn't have shoes on; the other, hightops. Sixteen-year-old Kelly was decked out in a black tux, with a yellow vest and tie to match his date's dress. Kelly's friend Thomas arrived with his tux on, but going more casual without a tie and the shirt open at the neck. Prom night had arrived.

Sometimes I'm surprised at Kurt's reaction. While he is academically about five-years-old, his emotions, powered by hormones, are all teenager. I forgot that, until Kurt reminded me when he went ga-ga over the girls.

How does a five-year-old impress the girls? By bringing his toys out to show them! First came this huge alarm clock that Kurt had purchased at a garage sale last week. It is the size of a dinner plate. Kelly and the girls looked it over, kindly humoring Kurt and trying to get the alarm to ring. Then Kurt brought out a police car that makes noise and flashes lights. I decided to put a stop to it by catching him in the hall before he brought more out.

We went outside to take the couples' pictures by the red brick siding along the front entryway. Kurt grabbed his camera and followed, snapping photos. He's usually not this involved. In fact, he quite often stays in his room, ignoring visitors. But these were girls!

Kurt has not gone on a date or attended prom. But being attracted to the opposite sex is still there.

Watching him is bittersweet.

Saturday, April 18, 2009

Community Homestead

Kurt and I started going to Community Homestead (CH) when he was 14. We met Nadine on our first visit. She took us on a walking tour of the premises on a sunny spring afternoon. There were trails to each of the six houses, where some activity was performed by work groups. The house on the edge had a bakery, then we walked a path mowed through the field to the white house with the barn full of chickens. We crossed back over to the main farmland and saw the other houses, visited the calves in the milking barn and then back to the garden where we started. All along the way we met other people who lived and worked there.

Once we got started volunteering, Kurt and I attended twice a week. He settled into stenciling note cards with a group at Altair and I did brain gym activities (that's another story), then helped paint puzzles with a group at Morning Glory.

Being at CH was one of our most valuable homeschooling experiences. I wanted a place for Kurt where he was welcome, he had friends, and he was doing something. He was given patience to learn at his own pace. I worried that he wasn't living up to their expectations and pushed him to do better. They gently taught me that his pace was his pace, and that I should back off. They separated Kurt and I so he could be his own person.

Kurt started out in the stained glass group. I learned more about him. He worked with cut glass, carefully washing the piece after the solution was painted on it. I would have never given him something sharp that might injure him. When I picked him up once he was sitting at the kitchen table, a big knife in his hand, cutting potatoes, and I made an audible gasp. It took me by surprise. He could have cut his finger off! I quickly recovered and had a huge revelation. For the first time, I realized Kurt was capable of more than I gave him credit for.

That day changed my behavior. I gave him more responsibilities at home. He was 14 and he had never had chores to do! He began setting the table and unloading the dishwasher. I learned to let him do more of his self-cares, things I had gotten in the habit of doing for him.

Seeing Kurt's capabilities wasn't the only transformation. Each time I helped make drip candles or paint wooden puzzles for an afternoon, I felt the stress lift off my shoulders. Taking time to focus on one task had a huge impact on me. I was a multi-tasker, managing a lot of things four our household of five. People go to spas and spend hundreds of dollars to alleviate stress. I would spend an afternoon with new friends, doing something productive and creative and get the same results.

I don't get the opportunity to join in the work groups now that I'm working. Dropping Kurt off this week since Laurie isn't doing it wasn't a bad thing. I still feel the stress drain away as I enter the beautiful landscape.

Wednesday, April 15, 2009

Sunday, April 12, 2009

Walking the Tightrope

We are constantly trying to balance getting Kurt's needs met while still allowing Paul and I to work. Since I started working three years ago, we hired a personal care attendant (PCA) for Kurt. He is developmentally five years old, and has a seizure disorder, so we do not leave him alone.

Hiring a PCA has its good points and drawbacks. I can work outside the home, earn a little income that is beneficial to our family and helps me keep my sanity. On the other hand, Kurt begins to rely on her too much to do things he can normally do himself. And this goes against the grain because his dad and I want Kurt's self-care skills to grow.

Laurie is a woman in her late 40s, with adult children and grandchildren. She is patient and the pair get along great. Paul and I go to work, feeling secure that Kurt is being taken care of.

Sometimes, things happen, that push us into the next stage.

On Friday, Laurie said she needed to cut back due to health reasons. She'll be working on Mondays, Tuesdays, and Thursdays, when Kurt is at home, but can no longer take Kurt the other two days when he goes to Community Homestead.

This has always been a problem with Community Homestead. Kurt needs a ride, 45 miles one-way, but doesn't need Laurie there. We did not want to cut Laurie's hours, because she always wanted full-time. Now if we can just figure out the ride....

Sunday, April 5, 2009

Bowling for Dollars

Yesterday afternoon, I watched Kurt bowl. He has a two-handed throw and doesn’t use the holes in the ball, but it goes down the lane in a straight line, usually in the center. Sometimes, the ball would lose momentum at the end and veer off to the side, missing most of the pens. Other times, he would knock down eight or nine pens. And he picked up a few spares.

The event was a fundraiser for the group we belong to, BRIDGE for Youth with Disabilities, We give those with disabilities a chance to be active and welcome in the community.
Kurt was one of the special bowlers on his team. There were also two university students and one high school student.

All 16 lanes were packed with bowlers for Bridge. The money gathering was done in the weeks before this event. The bowling was the party afterwards. The students, including Kurt, weren’t required to raise any money, although they could if they wanted to. The team captain, who was on the board, and another adult did the fundraising. I passed around a sheet at work and received several donations for Kurt to hand in.

Kurt didn’t want me to help him, so I backed off. Instead, a young man named Spencer made sure he knew when it was his turn and stood by him when Kurt bowled. Kurt was a serious bowler. When his turn came around, he got up, picked up his lime green ball, walked to the line, bent over and rolled the ball down the lane, and then stood by the ball return, tapping his foot while he waited.

After his second shot, Spencer and Kurt high fived. Kurt put his head down and hid his grin. I could see the pleasure on his face. He was just one of the guys, a rare occurrence for Kurt.

I know the university students are required to do a service project. There are many they can choose from, so choosing the bowl-a-rama tells me they are open to special needs students. Sure, they may have thought it sounded fun. That’s okay. Having fun and including my son says a lot to me. Even for a tiny moment, Kurt belongs. He’s accepted. That means a lot to me.

Friday, March 27, 2009

Savvy Parent Screws Up

I like to think that I’m a savvy parent when it comes to medical situations. After all, I’ve dealt with Kurt’s medical disability for 16 years.

So when 16-year-old Kelly came home from skiing a week and a half ago with a hurt arm, Paul and I thought it was sprained and didn’t take him to the clinic. His right arm was swollen, Kelly said it wasn’t too bad, and he could move his arm and fingers.

Looking back, Kelly was on spring break and he planned to ski all week. His arm remained swollen for a few days while Kelly continued to ice it. And he went skiing on Saturday. We thought all was fine.

On Monday, Kelly came to me that evening, "I think I should have my arm checked."

Further discussion revealed that he was still in pain, he couldn’t turn his hand palm up, and it hurt to turn a doorknob.

I called the clinic and got him in Wednesday evening. The appointment was with a man that I’ve been known to argue with, once in the doctor’s office and once on the soccer field.

Kelly got his arm x-rayed, I didn’t fight with the physician’s assistant, and we found out Kelly had a chipped bone right at the wrist. The PA wanted us to see an orthopaedic hand specialist. He didn’t know if the orthopaedist would want to remove the chip or leave it.

Friday, we brought the x-rays to the specialist. He said the bone chip might be from a previous injury (Kelly had broken his right arm four years ago) and he wasn’t worried about that. However, he said Kelly had a fracture of the ulna bone, the bone that runs along the outside of the arm. I couldn’t believe it. I sat in the exam room feeling guilty for not having his arm checked out sooner, but also relieved that we finally did have it looked at. And the doc said, he would have had a worse break if he had fallen again. We let him go skiing last weekend!

Kelly didn’t need a cast, but a splint. We went to the therapy center next, and an occupational therapist molded a splint for his arm. His skiing season is over. With April approaching, he may have had two more weeks, at the most, so it isn’t tragic.

I’m thankful that Kelly’s arm is taken care of now.

Friday, March 13, 2009

Friday the 13th

On Friday the 13th, seventeen years ago, Kurt had his first seizures. His dad and I hadn’t a clue why our toddler suddenly hiccupped and toppled down the basement steps. Or why, when Kurt was sitting in my lap eating Cheerios, his head dropped so forcefully that he smacked his forehead hard against our kitchen table?

Two days later, with a black eye and a nasty looking goose egg on his forehead from the previous falls, he was transported by ambulance to St. Paul Children’s Hospital after I found him seizing in his crib.

After a couple of days in the hospital having an EEG and CT Scan, Kurt was diagnosed with epilepsy. And those sudden drops were called atonic drop seizures.

Our path changed on that Friday the 13th.

Tuesday, March 10, 2009

Annual Checkup

We see Kurt’s doctor today. I can’t help but think of the past. Seven years of uncontrolled seizures, a five-week coma that finally stopped the seizures, and Kurt’s continued progress there after.

His neurologist has been with us throughout. We have a history together. When the doc tells me his thoughts and his eyes gaze upon me with intense sincerity, I feel grateful he is Kurt’s doctor.

We both look at Kurt’s med list with caution. He takes three different anti-seizure meds, 18 pills in all each day. Do we change anything to reduce side effects? Are we brave enough to do that? Or should we leave well enough alone rather than avoid a seizure that could lead to more and more?

Besides the scary thoughts, visiting the doctor’s office is like a family reunion. The nurses look at Kurt as if he’s their favorite nephew, fondly remembering his stubborn disposition at three-years-old and commenting on how much he’s grown in the past 16 years. And I’m comforted by their compassion.

Kurt at 19