September 16, 2012

Over a decade ago we brought our nine-year-old son home from the hospital after a traumatic and life-threatening event. Uncontrolled seizures, a drug-induced coma and stressful three months passed before he could come home. The ordeal had taken a toll on him, his brothers and his dad and me.

Although he came home with some disabilities that we’d work to correct for many years, we were so grateful that he was alive and on the road to recovery.

Once he came home Easter was approaching, and remembering other holidays when our son was in the hospital, I asked the epilepsy unit where our son had stayed if we could deliver spring baskets for all the patients on the unit. They agreed.

The boys were so excited to shop for and assembly the baskets. We bought stuffed animals, small toys, games and individual sized bags of candies. We filled our baskets and delivered them on Saturday.  The boys’ smiles were bigger than I’d seen in a long time. I realized how much it meant to all of us to give back, even in a small way like this.

Other than volunteering at my sons’ schools, I always thought volunteering was for later in life when I had more time. But the recent events stirred the volunteer gene. From then on, I made time to give back.

Maybe a life-altering experience is what it takes to get started. Sometimes volunteers help with hospice because a loved one was on hospice; a cancer survivor raises money for the Relay for Life; a parent helps an organization that benefits children with special needs.

The benefits of volunteering are immense. Often people find that they receive many rewards from volunteering.

I highly recommend finding your passion and get started.


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Dreams for My Son

March 23, 2012

The sun was hot in the cloudless sky the first time Kurt and I volunteered at Community Homestead, a non-profit rural community living and working with people with special needs. We followed Nadine, the young woman in charge of the garden, to the strawberry patch.

“Can you weed this row?” she said.

“Sure,” kneeling, I started pulling tall grass from the dry earth, ignoring 14-year-old Kurt who remained at the end of the row, arms crossed and frowning. Nadine moved off to tend to other duties.

I was willing to do my best even though the little gardens we planted at home were usually tended by my husband. I yanked weeds and piled them up and moved down the row. The other volunteers pulled and moved swiftly in rows on either side of me, gaining more ground than me as I crawled along. I apparently sucked at weeding.

“Do you want to help?” I looked up at Kurt, who still stood at the end. Not responding, he walked off and sat on a bench in the shade. His reluctance to help didn’t surprise me. He didn’t like to be out in the hot sun, plus getting him to do any chore turned into a “chore.”

I had so wanted to make a good impression for Kurt. I had wanted to be the helpful mom and have Kurt willing to join in. I had learned that they expected everyone to be productive, working at whatever level their special needs allowed. Nadine hadn’t put any pressure on us. This was our first visit, after all. I was the one who had high expectations, somehow wishing to wow them with how helpful Kurt would be. Unfortunately, he would have nothing of that.

By the time we headed home that afternoon, I had grime sticking to my sweaty skin. In my over zealousness, I was dehydrated, a bit sunburned and tired. I cried and fretted on the 45-minute drive, not knowing how I would continue to volunteer there.

Yet, we did. Because of what I didn’t want for Kurt and because of what I wanted for him.


“In your wildest dreams,” Jon, the behavioral psychologist asked months before our first visit to Community Homestead, “where do you see Kurt living when he is an adult?”

My wildest dreams of him living on his own had disappeared years ago due to the cognitive disability caused by thousands of seizures. But I did have dreams.

“I can’t see him at a group home,” I said. “I don’t want him to be only with people who are paid to take care of him.”

I took a sip of coffee at our kitchen table and added, “I don’t want him to be parked in front of a tv for hours each day.”

“Okay,” Jon wrote notes on his pad, “That’s a list of what you don’t want. Now, what do you want?”

“I want him to have as much independence as possible. And I want him to have purpose in his life.”


I remembered that conversation often during our rocky start at Community Homestead. I couldn’t let go of my dreams for Kurt. We had to keep going.

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Would our son live with us forever?

March 14, 2012

I was prepared to have our son live with us forever. Those weren’t the dreams I had for his future. Nor what I expected my life to be like once our three sons were raised. However, when you have a special needs son who is having tons of seizures, and you worry that no one will have the patience to care for him, let alone keep him alive, a mom begins to realize that her future is changing.

I had those thoughts for many years, but now that my son is 22 years old, I’ve learned a few things about parenting a special needs child.

  1. Parents do not live forever. While my first reaction was that his dad and I were the only ones who would and could take care of him, I’ve come to realize that we must pass the torch to suitable caregivers. If we don’t, someone else will decide when we’re gone, and that decision may not be the best for our son.
  2. Special needs children grow up. He listens to music on his ipod, is attracted to girls his age, and would rather be with his friends than with his parents. He doesn’t have all the abilities of someone his age, but he has the feelings and many of the same wants and needs of a young adult.
  3. Special needs children have the right to separate from their parents. My son sees that his brothers have moved out and created their own lives. Holding him back would be wrong when he is ready to fly the nest.

When I realized he would move out someday, the question became What are our dreams for his future?

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31 Ways on WisKids Blog

July 24, 2011

The post entitled “31 Ways in 31 Days” is featured on the Wisconsin Council on Children and Families (WCCF) blog. They have spent the month of July on a series of blog posts looking at the ways the 2011-13 Wisconsin biennual budget will affect children and families. It’s a good read and shares the details of the budget.


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BRIDGE Matters

March 20, 2011

I dropped my son off at a birthday party today. Decorations hung from the windows, frosted cupcakes sat on the table, and a Wii game was already in progress. Sounds like a typical party, yet the participants weren’t so typical. My son and the other guests have disabilities. This party was sponsored by the BRIDGE Birthday Club. Rarely do children with disabilities get invited to parties. That’s what makes these events so special and why BRIDGE holds dances and other events throughout the year.

Having these opportunities doesn’t just matter to the special needs youth. It matters to us parents, as well. We want our special needs kids to have the same chances to have fun and be with friends.

BRIDGE for Youth with Disabilities is a non-profit based in Hudson that serves, as the name implies, youth and adults with disabilities throughout the St. Croix Valley. Their vision is that youth and others with disabilities will be seen as community assets to be nurtured and developed so that they can become welcome, productive, and engaged citizens in the community.

I know a young man who has graduated from high school, and is unable to work because of his cognitive disability. There are few options in the area. Fortunately, we have BRIDGE Adult Day Services. He joins his friends five days a week to do meaningful activities, such as volunteer work, swimming at the YMCA, and learning life skills. Because he is being cared for in a safe environment, his mom is able to work. BRIDGE matters to him and his family.

BRIDGE programs and events are funded through memberships, fundraising and grants. They offer lifelong learning, leisure, and work.

On April 9, my son and I are on a team for the BRIDGE Bowl-a-rama. If you would like to support BRIDGE and the many programs for members of our community with disabilities, please consider making a donation for this annual fundraiser. Visit BRIDGE. If you would like to make a pledge for our team, please contact me.

Thank you,


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ESPN’s video explains a lot

February 13, 2011

My son, Kurt, was excited when I told him about the upcoming Valentine Dance. Many of his friends would be at the event held by BRIDGE for Youth with Disabilities.

When Kurt, his dad and I arrived Saturday night, we found the softly lit room decorated with hearts and roses, the DJ’s tunes were rockin’, and a small group of young adults with and without disabilities were on the floor. Kurt’s dance moves were limited to snapping his fingers, but the smile on his face said that was all he needed. My husband and I talked with other parents while we stood back to watch.

Earlier that day, I saw a segment produced by ESPN that profiled the student managers for Villanova’s men’s and women’s basketball teams. Both student managers have cerebral palsy. When one of the coaches was interviewed, he said, “Like everyone else, they just want to be a part of something bigger then themselves.”

I thought, Yes! That’s what it boils down to.

The basketball teams were just a microcosm of the wider world, but they did it right. They included these two students with disabilities. Bridge is another microcosm, just doing its best to help the area youth with disabilities be a part of something bigger than themselves.

When we took Kurt home, he was talkative and full of laughter. It may have been just an ordinary dance, but it meant a lot to Kurt and his parents.

Here’s the video of Villanova’s Student Managers:


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Opportunities for Special Needs Students?

January 31, 2011

When you’re the parent of a typical kid, you plan his or her play dates in the beginning, but soon enough, your son or daughter takes over with neighborhood kids, and school, church or sports friends. As the mother of a special needs son, even though he’s 21 now, I’m still the one looking for social events he can attend.  Like anyone, he wants friends and a chance to have fun. Opportunities for special needs students and young adults are rare.

Fortunately, BRIDGE for Youth with Disabilities offers monthly activities for 6th through 12th grade, plus super seniors, for the St. Croix Valley communities. There are three social events slated for February, including a Valentine’s Day dance.

For more information, visit http://bridgeywd.org/.

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What Will You Do?

January 13, 2011

I often take note of the motto “We are Building an Inclusive Community” on the Main Street sign I pass upon entering River Falls. Wanting to know the original intent, I emailed Mayor Don Richards with my questions.

Mayor Richards explained that Jim Hunt, founder of Partnership for Working Towards Inclusive Communities, said, “just as Whites Only signs were used to keep people apart in the old South, signs promoting inclusiveness can bring people together.”

Our mayor wanted to promote the idea of including all people regardless of race, religion, ethnicity, religious beliefs, gender preference, elderly and handicapped status.

Through his insight, and that of our city council, we received this designation half a dozen years ago from the National League of Cities after we met certain requirements. We are only one of two cities in Wisconsin with this honor.

Last November, the University of Wisconsin system released a Joint Statement on Civility signed by the UW President and the Chancellors of each campus, including Chancellor Dean Van Galen of UW-River Falls. Their memo cited that a number of “campuses and surrounding communities have experienced incidents of violence and intolerance.” They called for a return to civility.

The UW letter did not mention River Falls, but that is not to say we don’t have issues with intolerance. Some examples include bullying in our schools and recreational sports teams, and vandalizing homes of targeted students. I’m sure there are other problems I don’t know about.

If you have seen the signs, then you’ll note they say “building an inclusive community,” key word being building.

I’m not writing to vent about these issues. I’m writing as a call to action. With the nation wanting to tamp down heated political rhetoric, and with an epidemic of college student suicides due to harassment, now is the time to make progress. Now is the time to go one step further in building our inclusive community.

As President Obama said at the Tucson Memorial Service, “We may not be able to stop all evil in the world, but I know that how we treat one another is entirely up to us.  I believe that for all our imperfections, we are full of decency and goodness, and that the forces that divide us are not as strong as those that unite us.”

I believe the people in this community are well meaning, but sometimes we just don’t know how our behavior hurts others. Our city government set the foundation for us to be inclusive. Now let the citizens of River Falls build upon it.

What are you called to do? How will we move forward?

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