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.

Kurt at 19