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