Sunday, July 25, 2010

When Little Brother Grows Up

I was at the breakfast counter eating a bowl of Kashi cereal with blueberries before work last week. Kurt was sitting on a barstool next to me watching SpongeBob. He tipped his full pill cup of meds into his mouth and took a big swig of water before turning to me.

"Where's Kelly?" he said.

On a normal Monday this summer, I would be driving to work and Kelly would be making sure his big brother took his anti-seizure medications and ate breakfast before they drove to Hudson for Kurt's day program.

Instead, Kelly left early that morning with two friends for a road trip to Colorado. They were taking a week-long adventure before the three of them went off to separate colleges.

"He left with Calvin and Mark, remember?" I said.

Kurt frowned, "What was Kelly thinking?"

He likes having his brother around. "Come on, Bud," Kelly would say and Kurt would saunter out to the Blazer in the morning, lunch box and water bottle in hand, ready for work. When Kelly picks him up, Kurt introduces him to his friends. He likes to go through McDonald's drive-thru and order burgers. Or stop at Walmart to get a new DVD. I think he must feel like one of the guys, something I can't give him.

Knowing college is a month away, I decided to gently warn Kurt of the future. "Remember Kelly is going to move away and go to school pretty soon? Then he won't be helping you anymore."

Kurt finished his spoonful of cereal, then paused. "I don't want Kelly to go to school far away. Doesn't he know I need him?"

We ate in silence while I thought about Kurt's words. Over the years, I often wondered if the two of them would ever get along. While Kurt was regressing because of his seizures, Kelly, three years younger, was growing and learning. Their rivalries knew no bounds. Kurt, strong and angry, could wrench a toy out of Kelly's hands and knock him down before I could blink. Kelly, no slouch when it came to being strong-willed, never gave in. Ever.

It wasn't until Kelly matured enough to reason with Kurt  that the fights and rivalry finally ended.

When Kelly was 14, he started helping me with Kurt so I could run an errand or when I was going to be late from work and Kurt's aide needed to leave. Kelly found his way with his big brother. "Come on Bud,"  he would say with a steady calmness that Kurt trusted. He could coax him outside to play Frisbee or get him to clean up his movies.

Kurt's words reminded me of how hard it must be for Kurt when his brothers move away from home and leave him behind. It's different for a parent. It's our job to send our sons out in the world, even when we know they'll be missed. But for a sibling to watch his little brother grow up and leave...

Sunday, July 11, 2010

Parade On

Last week, I coaxed Kurt to be in the River Falls parade with me. I was co-coordinator for the BRIDGE for Youth with Disabilities float, with duties to welcome any parents and special needs youth and adults who showed up, hand out t-shirts and organize the group to ride the float or walk.

Kurt wasn't too keen on the idea. "How about you go and I'll stay home?"

I smiled. I'm doing this for him, and he's just not that into it.

I continued coaxing each evening. "You'll see your friends. There'll be fire trucks and tractors."

On Friday, when he got home from Community Homestead, he seemed ready, if not exactly eager.

We approached our float and found the driver. "Hi Kurt," the man said. He turned to me, "I'm Tom. I know Kurt well. My students are in the work program with him."

The BRIDGE day program takes Kurt and his peers to volunteer jobs in the community. I knew they work closely with the special education students at Hudson High School and I had heard of Tom, but hadn't met him before.

The two continued to talk and high fived, then Kurt pointed at the front end loader parked behind us, apparently the next unit in line.

"That's what you'll be riding in," Tom said to Kurt.

I knew he was joking. Since his delivery was straight-faced, and because Kurt loves construction equipment, I thought he might take Tom seriously. However, I didn't address it because people started arriving.

A half an hour passed while we greeted the pairs of chaperones and special needs adults/youth. We waited in the shade of the nearby gas station until it was time to take our places. A couple of people in wheel chairs would be pushed by their caregivers and I was to walk alongside the float with another woman to hand out bags containing BRIDGE info. The rest of the crew would ride and throw candy.

I turned to Kurt. "Pick a spot to sit."

His back stiffened and he stood up straighter. "I'm not riding on the float."

"Well, you need to either ride on the float or walk."

"I'm riding on that," Kurt made a large sweep of his arm and pointed at the front loader.

Oh great - just as I had suspected. "That isn't part of our group. You need to get on the float."

Kurt crossed his arms in defiance and stood his ground.

"Look," I said. "You need to get up on that float. You don't get to ride on the front loader. He was making a joke."

Kurt blinked and climbed on. Everyone got settled. We crawled along behind another float and at the corner, we were directed onto Main Street behind a fire truck.

Busy handing out bags, the time seemed to go fast. When I took a moment to look at Kurt, he was smiling and waving. His hand held the front of the trailer. I imagine, he was pretending the front had a push blade and he was driving.

See for yourself in the photo below:

Sunday, June 27, 2010

Pig Roast Time

Kurt's first words to me Saturday morning were, "What time do we go to the pig roast?"

He was going to have a long wait since we wouldn't be leaving home until late afternoon. The 11th annual Community Homestead Pig Roast is a fundraiser for the non-profit community living and working with people with special needs.

"A long time after lunch," I said.

The day passed slowly, and a few more questions, "Is it time to go yet?" were asked and answered before we finally left home.

After the 45-minute drive and parking the car in a farm field, Kurt, Paul and I walked to the community center. Kurt no longer hid his head like he did when we first started coming here seven years ago, but greeted every one, even yelling out to people some distance away.

There was an area blocked off on the left, as you can see in this picture. An electric fence was up and there were spray painted markings on the grass. I puzzled over it for a moment, but let it go. Later, I entered a raffle for a big basket of crafts made by the community members and chose the square "21," Kurt's age.

We had our meal of pork, applesauce, beans, potatoes and bread, (all homemade), in the makeshift dining area under the tents, in case of rain. Fortunately, the rain held off. We were lucky there was cloud cover because the temperature was 84 degrees and muggy.

I had invited John and Harriet Gushue. Fortunately, we found each other and we made room at our table. It was their first time. John mentioned he was interested in seeing the cowpie raffle. Puzzled, and hoping I didn't sign up to win a cowpie, I asked for more details.

Community Homestead is an organic dairy. Here are some of the cows out in the pasture:

Here's the cow that chose the winning number "12" in the fenced off area I had seen earlier:

We took a walk to the gardens and orchard to show our friends around. Kurt was more than happy to be tour guide. These are some of the flowers that are used to create bouquets and sold at farmer's markets.

As we walked around to see the raspberry and blueberry bushes, a cat greeted us.

By the time we got back, the folk dancing had begun.

We had some sliced watermelon and watched the dancing before walking to the car.

Kurt said, "When do we come again for the pig roast?"

Sunday, June 20, 2010

The Boys

Many years ago, Paul and I were sitting in the living room reading the Sunday paper. Kurt was four-years-old and I was still trying to figure out how to be a parent of a special needs child.  
The neurologist had told us our son had a severe seizure disorder called Lennox-Gastaut syndrome. Not only would he have life-threatening seizures, but would also become developmentally delayed. I had spent many hours wondering what that meant for Kurt.

"Paul," I said, "how do you see Kurt's future?'

Paul shrugged.

"I mean, do you see him having a job and living on his own?"

"Maybe," he said, turning the page of the sports section.

Not giving up on a discussion, I said, "Do you see us getting the seizures under control?"

"Yeah, I hope so."

I was still dreaming that we would stop the seizures and Kurt would not be disabled. "I hope he catches up and everything will be fine." I sat for a moment, watching Paul read and waiting for him to jump in before I realized he thought the conversation was over. "What do you think Kurt's future will be like?"

He gave up and put the paper on his lap. "I think that Kurt will be Kurt."

"What does that mean?" 

"You know, Kurt will be Kurt."

"No, I don't know what that means."

"Whatever abilities he has will be fine. I will love him no matter what," Paul said. "We don't know what progress he'll make and it doesn't matter, Kurt will be Kurt."

We sat silently then, and Paul turned back to the sports section. I stared blindly at the maple tree in the front yard. I was surprised by his acceptance. Yes, I would always love Kurt. But I felt this need to beat the tar out of epilepsy and find whatever methods he needed to learn.

Paul had been just as much an advocate for Kurt as I had. But this consent that our son might have a disability was beyond me.

What I have appreciated about that day and all the ones since, was Paul's devotion to our son and his complete acceptance of his abilities. He is a loving father to all three boys. While I am the parent who has high expectations for our sons, Paul is the parent who accepts them for who they are. It's a lesson I'm continually working on. He's been a great role model for me. He's been a loving dad.

Happy Father's Day Paul! 

Happy Father's Day to all the dads of special needs children.

Saturday, June 12, 2010

A Party

Kurt told me he liked having his family around. Since his younger brother Kelly was graduating last weekend, we had company. My dad was visiting from Louisville, Kentucky and Paul's mom came from LaCrosse. In addition, Keith and his fiance, Jen, were here and my mom too, who lives near us.

There were many highlights to the weekend. One was that after the party, Kurt suggested we play his dice game. In Left, Right and Center, everyone starts with 15 cents. With each turn, the players must pass their nickels depending on the role of the dice. The last person with money wins. Kurt won four out of seven games and finished with a pocketful of change.

Here's a picture of Grandma Ruth, Kelly, Paul and Kurt.

Monday, May 17, 2010

On the Eve of 21

Kurt's 21st birthday is tomorrow.

Many thoughts are running through my mind:
  • "If Kurt were a cat, he'd have eight lives left." That's how his neurologist put it when Kurt survived a drug-induced coma. He has lived 12 years longer than the doctors in the Pediatric ICU expected.
  • The smallest steps since then have seemed like miracles.
  • I have to remember when Kurt refuses to do something, that in the past, he may not have been capable of the task. Now he is, but the refusal is his strong will showing. That trait has been his saving grace.
  • Over the years, I have come to accept that Kurt will never be independent because of his cognitive disability due tragically to the seven years of uncontrolled seizures. Kurt is working to prove me wrong. He wants to make his own decisions and I must learn to give him some space. 
  • He is on the cusp of his own version of independence.
Happy Birthday Kurt! Love, Mom

Sunday, May 2, 2010

Sunday, April 25, 2010

Testing, 1, 2, 3...

Kurt has been tested several times lately regarding his stealing. I've discovered it is about impulse control. He wants something, so he takes it. He knows right from wrong, but he impulsively swipes the object of his desire anyway.

Things started clicking for me when I talked to our behavioral consultant. "Kurt needs to control his impulses so that he doesn't do risky behavior," he said. "I worry that he'll do something that puts him in danger."

So this is about more than stealing. This is about giving Kurt the opportunity to practice making the right choices, practice in becoming competent as an adult. It struck me that I had already done this with Keith, and I'm in the middle of it with Kelly, our 17-year-old high school senior. Teens are by nature impulsive.

Searching for "impulse control" and "teens" on the internet brought 79,000 hits. When I added "epilepsy" to the search, 344,000 links came back. Impulse control is regulated by the brain, from what I've read, and someone with epilepsy is at a higher risk of having problems controlling their impulses.

On Saturday, Kurt saw a pile of pictures I had gathered of his brother Kelly. "May I look at these?" he said.

"Sure." I was already impressed that he asked first. In the past, I would not have left them sitting out because Kurt would have been too tempted to take them. "But don't take them. I need them for Kelly's graduation party."

As we sat in the kitchen together, Kurt remarked over several of the pictures. "I wish I had this one," he said. Kelly was three-years-old, dressed as a fireman for Halloween. "I would put it in a frame in my room."

"I have to make copies. Would you like me to make you a copy?"

"Uh-huh," he said.

I was pleased with our conversation and the fact Kurt was willing to wait for something he wanted. Later, I found him downstairs with one of the pictures. "Did you take that?" I asked. "Remember? You weren't supposed to take any."

"I did take it," he said and handed it back.

This was practice, and admittedly, Kurt took a picture. But now I have some perspective. Keith made mistakes. Kelly makes mistakes. And they don't have epilepsy. It's going to take a lot of practice.

Sunday, April 18, 2010

Been There, Done That

We were nearly through our game when a mom and her special needs son arrived. "I think we are supposed to bowl on this lane," she said to me. Her son was tall and husky, much bigger than her and she kept control by lovingly holding both hands in hers. I recognized that move, having done similar with Kurt in the past.

So Sue and Nate joined us. We were bowling at the BRIDGE for Youth with Disabilities bowl-a-rama. The 16 lanes were full and loud music was playing over the crash of pins; general chaos all around.

Our team, like all the others, had a special BRIDGE bowler(Kurt was ours), three bowlers who had collected donations in the few weeks before this event(me, my mom, and friend Leann's son Shane), and University of Wisconsin - River Falls students who were mentors to the special bowlers. Our team had three students; Miranda was helping Kurt and the other two students, tall basketball players, didn't have any bowler assigned to them.

"Your turn to bowl Nate," I said.

Nate had a faint smile as he looked at me with his brown eyes. His mom followed closely as Nate picked up an orange ball, approached the lane and dropped it like a hot potato. It slowly rolled its way down as we all held our breath, hoping the ball wouldn't stop short. Finally, a few pins were gently toppled.

"Wade," I said to one of our students. "Would you help him so his mom doesn't have to?

He jumped up and took over. I remembered the relief I felt when students helped Kurt last year, our first time at this event. Kurt knew how to bowl, but needed to be told when it was his turn and having a student tell him was much easier for Kurt to take than having his mom do it. Besides, the students celebrated with him, offering high fives when he knocked down pins.

I could see Nate was a handful. He tended to wander in front of the other bowlers, and Wade began holding his hand to keep him in place. When Nate sat down, he would stretch his feet out and gently tap his shoes on mine, in some kind of secret connection I didn't object to.

Sue had a fervent look and attended to Nate's every need, on guard and ready for anything. I knew that look. I've worn it myself. When Kurt was on heavy doses of anti-seizure medications and having multiple daily seizures, his behavior was unpredictable. The noise in here alone may have had him bolting for the door. Or hiding out in the bathroom. Or he might have thrown a ball at someone or knocked everyone's drinks off the table. Being in public with Kurt required superhuman strength and I would be exhausted when we got home. As Kurt's behavior has improved, and because of the welcoming atmosphere of BRIDGE, I've learned to relax.

"So do you live in Hudson?" I asked Sue.

"Yes," she said. "Are you a volunteer?"

"No, that's my son," I pointed to Kurt. She glanced at Kurt as he prepared to bowl and looked back at me with new eyes. I hoped that she felt a little less alone. I know that BRIDGE helps me feel a part of the community.

As I reflect on the day's events, I can't help but think of Sue and all the parents who are dedicated to their special needs children. And all the caregivers and foster parents who choose to take this 24x7 job.

I know you do it out of love. You are amazing!

Sunday, April 11, 2010

Waiting for the Right Moment

Two weeks ago, the youth officer came to our house and talked with Kurt about stealing. It was an effort on our part to curb this behavior. And since then, I've waited and watched for any signs that Kurt listened. Or if he didn't listen, I wanted to catch it and remind him of the officer's words and his pact to stop taking other people's things.

One day last week, I had miscellaneous papers and a few of my business cards sitting on the kitchen table. I walked into the room and found Kurt looking at my mess.

"What Kurt?" I had come across one of those moments I had been watching for. In the past, a piece of colorful mail on the kitchen counter or a pen lying about would disappear. I wouldn't know it was missing until it turned up later in his room. "What are you looking at?"

"Can I have one of your cards?" he said.

I handed him one and while he paused to look it over, I had a moment to think. He doesn't like to be praised so I needed to phrase my words carefully.

"I appreciate that you asked for it," I said, with little emotion showing to make it low key, although inside I was thrilled.

"Why should I ask before I take?" Kurt said.


He got the message!

Saturday, April 3, 2010

I Called the Cops

I had to detach, realize Kurt's stealing was his issue and not mine, and believe that protecting him may mean letting go so he could learn his own lessons. His behavior hadn't gotten any better, and in fact was really becoming alarming. He had tried to steal the iPod at Worie's Place, after the long talk we had about stealing.

Last week, I called the police department and arranged for the youth officer to stop by our home for a visit. When Officer Golden arrived, Kurt came into the living room, with wide eyes and grinning. Policemen are one of Kurt's curiosities. They sat on the green couch on opposite ends, while I sat nearby.

"Do you know what stealing means?" Officer Golden said.

After an uncomfortably long since, Kurt said, "Taking other people's things?"

They went over much of what Paul and I have discussed with him: it's wrong, people won't trust you, and your friends won't want to hang around with you. Plus, the officer emphasized it being illegal.

"Before you take something," the officer said, "will you ask first?"

Another long pause before Kurt shook his head and quietly said, "Yes."

"Good. Let's shake on that," the officer reached out and the two shook hands.

A few days later Kurt came in from the garage. "Mom, come see," he motioned for me to follow. "Look," he pointed at his golf cart.

I immediately noticed the change. He had taken the Wisconsin Badgers license plate off and replaced it with the Luther Chevrolet plate from Paul's workbench. It was the plastic plate on my car when we purchased it.

"Did dad say you could take that?" I said. It's worthless, but the point was he shouldn't take things that don't belong to him. "Come on. Let's go ask dad."

"I'm not in trouble, am I?" He blinked and his eyes went wide. "I didn't like the "W" on the other one."

The Badgers plate had a large red "W" and I was struck by the fact he knew the letter. He doesn't read, so any recognition of the alphabet gives me pause. I don't know what Kurt knows. He reveals some knowledge, at moments like this, in passing. During the years when I tried to teach him the alphabet, he wouldn't have said "W" for a million bucks.

Back to the subject at hand, I was calm. There was no alarm in my voice. There was no feeling that I owned his behavior. I was fully detached. We weren't reacting emotionally.

"Remember? The police officer said to ask first before you take something," I said.

We found Paul in the bedroom. "Go ahead, ask him."

"Can I have the red license for my golf cart?" Kurt said.

Paul shrugged. "I don't care."

"See, you just have to ask first," I said.

I don't know if we've made any progress. Kurt's behavior hadn't changed, he still took something without asking, but my reaction had. Maybe, with a little more calm on my part, we can have these teachable moments. And with some reinforcement, we can get the "ask" before the "take."

Saturday, March 20, 2010

The Saga Continues

Last week, I took our youngest son Kelly to Duluth, Minnesota so that he could register for fall classes at the University of Minnesota. We had a wonderful time, but in order to make the trip, I had to take Kurt to respite because we were going on Wednesday and my mom was out of town, and Paul was working.

As I explained in my previous post, the last time Kurt was there, he had taken a CD player. This time, Kurt carried the CD player in and had a hard time looking at Chris and an even more difficult time apologizing. Chris knew in advance what was going on and really came down hard on him.

I picked up Kurt a day later. He's never thrilled to go home because he loves to be there and considers them his friends.

"Tell her what you did," Chris said.

I stood just inside the door. Kurt looked at the wall, up at the ceiling and down at the floor while we waited. I tensed in anticipation.

"I didn't mean to put Nicci's IPOD in my suitcase," he said.

"No," Chris said, his arms crossed. "You did mean to do that. That's stealing."

We went back and forth, talking it over with Kurt. His shame was evident. He knows right from wrong, yet that goes out the window when he desires an object.

I haven't call the youth officer yet. I'm hoping that if Kurt hears from the police that what he is doing is illegal, that will make a big impression on Kurt. He respects police officers.

What stops me from picking up the phone and calling? I have a lot of excuses. I'll call tomorrow. I'm not sure when the officer should come over. Maybe this request is inappropriate. How do I explain to the officer that my son is stealing?

I think I feel as ashamed as Kurt does.

Sunday, March 7, 2010


A few months ago, Kurt stayed for the weekend at Worie's Place, an intergenerational respite operated by long-time friends. Kurt loves to be there with the couple and their three kids, plus the other special needs people he has become friends with.

Shortly after he got home, I noticed he was listening to music on an unfamiliar CD player. After a little investigation, I found out he had taken it from Worie's Place.

Taken, pinched, pilfered, lifted. No matter what words I use, it all comes down to the fact that he stole it. And to my dismay, this behavior has been happening for years.

Not only at Worie's Place, but at home too. He sneaks into brother Kelly's room and takes DVDs or the earbuds he prizes. Or he takes post-it notes from my desk without asking. Or he finds objects of interest on his dad's dresser, to be found later in Kurt's room.

At first, these seemed minor. But the behavior continues and we realize that Kurt can not move to Community Homestead until he can be trusted to leave other people's things alone.

We've talked to him, yelled, explained over and over that stealing is wrong, yet he continues.

Jon, the behavioral consultant we work with said to call the police. I am to ask that the youth officer speak with Kurt in our home, explaining to Kurt that he is doing something illegal and could go to jail.

The plan sounds harsh, but sometimes we must be very blunt in our message to Kurt, in order for him to learn. Yet I haven't made the call. Telling Jon about this problem was the first time I told anyone outside our family. I'm protecting Kurt. I'm protecting myself.

Jon explained that if Kurt steals something in a store, the police will be called and then it will be too late to protect him. The matter will be in the hands of the police and the court system.

Hiding this is not protecting Kurt, I realize. Sweeping it under the rug is not helping Kurt make progress towards his independence. He needs to be trustworthy.

By sharing this issue on my blog, I'm going public. This is one step forwards. Next step when I have the courage: call the youth officer.

Sunday, February 28, 2010

Spread the Word to End the Word

Help me Spread the Word to End the Word. Make your pledge to end the use of the word "retard(ed)." 

Up to three percent of the world's population have intellectual disabilities - that's 200 million people around the world. It's the largest disability population in the world.

Help eliminate the demeaning use of the R-word, a common taunt used to make fun of others. Often unwittingly, the word is used to denote behavior that is clumsy, hapless, and even hopeless. Whether intentional or not, the word conjures up a painful stereotype of people with cognitive and developmental disabilities. It hurts. Even if you don't mean it.

Visit and take the pledge.

Sunday, February 21, 2010

Go for the Gold

When I volunteered on Saturday at the Special Olympics, I sat in a room off the cafeteria at the ski resort. I, along with other volunteers, wrote each athlete's combined times on the finals sheets. There were downhill, slalom and giant slalom events, with novice, intermediate and advanced categories. Some of the 60 athletes competed in all three events.

"I'm usually out with the team," said Rose. She sat beside me with a calculator adding up the times. "My son is a skier."

"Last year he didn't do so well," she said. "Last year, he tried the advanced level and he lost all of the events. We really had to talk a lot with him then, he was so upset. It was hard for him to face defeat like that. He had to decide if he wanted to continue. And he did, but he moved back to intermediate because he wasn't ready for advanced."

That night, I was reminded of the conversation with Rose as I watched the Vancouver Olympics. There was a special segment about the American speed skater Apolo Ohno and his dad, Yuki. When Apolo was young, his dad explained, Apolo competed in a race and lost, and it was obvious that he had given up. Afterwards, Yuki took him to a remote cabin and told Apolo to decide what he wanted to do.

Apolo made his choice. As of this post, he has won seven Olympic medals.

Just like Apolo, Rose's son was defeated and had given up. While he doesn't have the same level of skill as Apolo, he was faced with a similar choice and he decided to keep going, try harder and do his best.

This Special Olympics athlete made his choice. On Saturday, he won three golds.

Monday, February 15, 2010

What Have I Been Up To?

Focus Donna! Actually, I am, but my attention is not on writing. We have been doing some updates on the house and that's taking more of my time.

Kurt has been helping. Over the weekend, when Paul painted several rooms, Kurt moved the ladder for his dad, fetched rags or ran other little errands. When Paul took the quarter rounds off in preparation for the new flooring, Kurt hammered out all the nails.

This past year, Kurt has taken an active role in projects with his dad. In contrast to his brothers, it may seem like a small task. Keith starts his post-college job today. Kelly, a senior in high school, is not home much. He spends all available time skiing. If I take into account what Kurt has overcome, then he has climbed mountains.

In the 1990s, Kurt often woke having one or two seizures. Throughout his day, he had hundreds of twitches and nods as myoclonic seizures hit every few seconds. He wore a helmet because drop seizures would through him to the ground. In 1999, he had to relearn to walk and talk again after a bout with seizures that caused paralysis and brain damage.

I think having Kurt help around the house, with no seizures, is remarkable.

Sunday, January 31, 2010

One Thousand Muffins

A rarity with Kurt is to hear him say "thank you." He doesn't like that phrase, especially when addressed to him.

If I thank him for a task, he cringes, puts his hand out to say "stop" and tells me, "No thank yous!"

"Why can't I say thank you," I asked one day.

"Only kids get thanked," he said.

That's not true, of course, but I know what he's talking about. He hates when people become animated when they talk to him or get excited when he accomplishes a task. It is the same way some people talk to toddlers and Kurt gets that. It's patronizing.

When showing gratitude to a coworker, getting super excited and praising the person over and over would not seem sincere. So why would anyone do that to an adult with a disability? Unfortunately, that happens all the time.

Any show of appreciation or "Good job!" gets the cringe from Kurt.

The other day I made chocolate, chocolate chip muffins for breakfast. Yes, I know that wasn't the healthiest choice, but it sure did give me my chocolate fix.

I was sitting in the living room using my laptop while Kurt finished breakfast and I looked up to see him in the doorway.

"Mom," he said. "How many muffins did you make?"


"Next time, could you make one thousand?"

"I don't think so," I said. "But I put one in your lunch box."

He tilted his head and nodded with a grin, "Thanks."

Made my day.

Sunday, January 24, 2010

The Firsts

For the last half of 2009, I was experiencing "the lasts." A flash back of all the soccer games Kelly had played, from kindergarten through his senior year hit me as I sat along the sidelines at his last game. I had been a faithful supporter and now that era was over. There are many lasts over his senior year, something I experienced with Keith too, when he finished high school.

By December, I had switched to "the firsts," as in the first college application. I find myself looking forward to this new time and all the firsts when Kelly goes off to college.

I've been writing this blog for ten months and I've noticed the same trend. My posts were often stories that revealed my grief. I told of Kurt never having a girlfriend. Or of his brothers who have a much larger world to explore than Kurt does.

I dipped into the crevasses of my sadness and laid them out on paper. They were the dreams I had for Kurt that wouldn't come to be. Things he wouldn't experience because of this disability. To my surprise, they no long hold any power over me.

Sometime over the past year, the upswing hit. The grief no long simmers just below the surface. I now celebrate Kurt's firsts. My eye catches his accomplishments and the new opportunities in his life.

Tuesday, January 12, 2010

Shoveling Snow

Go back in time just a few years ago to January 2004. Kurt was 14-years-old; Kelly 11 and Keith 17. Snow was coming down hard. According to Channel 5 News, River Falls schools were starting two hours late.

Kurt was decked out in snow pants, blue jacket and turtle-print fleece scarf. His glasses were wet from the snowflakes and he was behind his brothers. I watched from the picture window while all three shoveled the driveway.

"Kurt," Kelly said. His cheeks were bright red and matched his unzipped coat. "Can't you go somewhere else?"

Kurt ignored him and continued his haphazard shoveling, creating a maze of strokes with his shovel while dumping each shovelful back on the drive.

"Mom," Kelly opened the door from the garage. "Can't you get Kurt to move? He's not helping."

Outside in my slippers, holding my denim shirt closed over a turtleneck, I asked Kurt, "Why don't you take care of the sidewalk? Or the deck?"

He ignored me too. I gave up, seeking the warm house. Let them work it out.

Back at the window sipping hot coffee, I watched Keith land a snowball on Kurt's hat. He laughed as he wiped the snow away, packed his own ball, approached his big brother and hit him square on the back of his yellow letter jacket. Keith spun around and a snowball fight ensued. Once over, Kurt began shoveling the yard.

As he tried to clear the yard of snow, I wondered, once again, why Kurt thought this was necessary. This was the typical scenario each time the boys tackled the drive. Kurt would shovel wherever he pleased, Kelly would get frustrated with him, and Keith would handle the ordeal in stride, and often break the tension in some playful way.

What seemed obvious to the rest of us (i.e.: shovel where the cars go or where people walk), Kurt didn't comprehend. His lack of concentration, perhaps, maybe even subtle seizures, or attention deficit, caused him to change direction, shoveling here for a few seconds and over there next.

Come back to present: January 2010. The boys are 23, 20, and 17. We had gotten a few inches overnight, and the snow hadn't stopped yet. Keith was home from college, but had left early for his job in Minneapolis. Kelly had left for school and Kurt was eating breakfast before I took him to his day program.

"I'm not going to shovel this morning," Paul said, as he rubbed his arm. His bad elbow was acting up.

"I will when I get home," Kurt said.

Paul and I looked at each other. "Hmmmm," my eyes widened.

That evening, when I brought Kurt home, he kept his winter gear on, grabbed a shovel and got to work. Keith and Paul weren't home yet and Kelly had left for ski instructor class. I went inside and watched from the living room. Kurt started by the garage, ran the shovel in a straight line across the driveway and threw the snow onto the yard. He took another pass and another, row after neat row, until the job was complete.

What changed? Even last year, he couldn't shovel the driveway. Now he has the skills. But this change is more than that. Some time since last winter's snowfall, Kurt decided to willingly take responsibility.

We made three changes last year that I believe have contributed to his growth. In May, we put Kurt on a good multi-vitamin with Bs and Omega-3 fish oil. Both are beneficial to brain function. In June, we let his personal care attendant go, so he was less reliant on someone else. And with that, we changed his schedule so that he spends five days a week instead of two, with peers, working and socializing.

I couldn't have guessed we would see these positive changes so quickly.

Saturday, January 2, 2010

A New Year

About 3am on January 1, 2006, my cocker spaniel, Maggie, woke me to go out. This wasn't a normal circumstance, but every so often she couldn't make it through the night. My eyes adjusted to the dark and I could faintly make out my black dog nosing around through the white snow. I stood on the deck in the back yard and the peacefulness and promise of a new year filled me with joy.

I looked to the corner of our yard, where the snow was untouched, and had a fleeting vision of a bunny. This thought was so strange and clear in my mind. I went back to bed and upon waking in the morning, the bunny apparition immediately popped into my head. As I told my mom, Paul, and the boys, they all laughed with me at my weird vision. But the rabbit wouldn't go away.

I coaxed Kurt and Kelly outside in the afternoon. We donned our winter gear, gathered shovels, buckets and a wheelbarrow. With a frenzy much like that of Richard Dreyfuss in the movie, "Close Encounters of the Third Kind," I directed the boys to help me gather all the snow in the front yard into a huge pile.

The day was overcast and the nearly 30-degree temperature made for excellent packing snow. We shaped and sculpted until the mound resembed my bunny. She was crouched down, with her ears back, eyes wide and wary as she looked out towards the street, protecting herself from any danger.

I felt a childlike exhilaration that day, and still do when I think of my bunny. Comparing my vision to "Close Encounters," I realize that the message is identical.

As one reviewer wrote on of Close Encounters, there is a sense of dread and foreboding at the beginning of the movie. As the movie progresses, the tone shifts, and the true intent of the film becomes known: "to transform the adult sense of fear back into the childlike sense of wonder at the world." He wrote, "This isn't about being afraid of the unknown, but rather embracing it. Paying attention to the "subliminal images" in life, allowing them to lead you into something unknown and perhaps dangerous, only then can one be open to wonder and experience the world through the magical eyes of a child."

My wish for you all this year: Follow your visions and dreams. When you do, your true inner child will emerge, and you'll be happier for it.

Happy New Year!

Kurt at 19