Yes We Can

None of us is normal. This may sound like it comes from a preschool picture book, but every single human being is special—different from the rest. So why do some differences seem so big?

In the 22 years since the passage of the Americans with Disabilities Act, resources for individuals with developmental disabilities have multiplied. Our society has become more accepting and certainly more helpful. But we’re still learning that it’s a two-way street. As much as we try to teach them, they are trying teach us.

Esther Streed, associate professor education, has a daughter with a disability and has served as foster mother to many kids with special needs over the years. “Often it’s not their inability to learn, it’s our inability to teach,” she says. “We are learning more and more all the time about how to reach these individuals—how to help them show us their assets, their skills, their intelligence.”

Why Not Us?

Every morning and evening, Ian Jones tells his parents he loves them. The three-year-old son of Matt ’01 and Angela Lowenberg Jones ’04 can’t speak, but he knows around 50 signs, and he’s working with two speech pathologists to “pull the words from his tongue,” as Angela puts it.

Based on what she learned from Dr. Streed, Angela has a person-first, disability-second philosophy when describing her son. “It’s Ian. He’s three. He’s rambunctious. He loves life, he loves people. He has Down syndrome, but it doesn’t hold him back.”

Ian has an older sister named Madelyn, 5, and a twin named Faith. When he was born, the delivery room went quiet. “That’s kind of scary when you know something is wrong but no one is telling you anything,” Angela remembers. Although she had multiple ultrasounds before the twins were born, nothing turned up. The doctor presented their son, and based on her special education experience, Angela knew immediately he had Down syndrome.

“My initial thought was ‘Why me?’ but it turned right away into ‘Why not me?’” she recalls. Both Matt and Angela believe they were chosen by God to be Ian’s parents because they are the best people to care for him. Matt is an associate principal, and Angela teaches special education in Fairfield, Iowa.

Angela got Ian started on an Individualized Education Program (IEP) when he was six months old. They have access to occupational and physical therapists and speech pathologists. Even more services will be available as he gets older.

Despite all the help, the family still faces challenges. One big worry was the twins starting preschool this year. Because he wasn’t potty-trained, Ian couldn’t go to the same preschool as Faith. “At first I thought, ‘What’s Ian going to do without Faith?’” says Angela. “But it quickly became, ‘What’s Faith going to do without Ian?’ She depended on him more than we ever dreamed.”

Ian is thriving at his preschool, where he has a special education teacher and classmates with special needs. Angela says Ian is the cheerleader of the class, encouraging the other kids to participate and giving them high-fives.

“He has the biggest heart of any kid I know,” she says. “He’s my little lover boy.”

Nearly every day, the family celebrates a new accomplishment of Ian’s, such as mumbles of words or his determination to be indepedent. But the lessons aren’t one-sided, Angela says of her “blessing.”“He truly has taught us more about life than we’ve taught him.”

Repeated Success

Emily Schwarz loves books and has a wonderful memory. Her mother, Mary Jankowski ’84, hopes she can someday find a job in a library or bookstore. “I think she would absolutely be in heaven.”

The 19-year-old has pervasive development disorder, which is on the autism spectrum, and Attention Deficit Hyperactivity Disorder (ADHD). She responds well to structure and repetition, which is typical of autism, and hates loud noises, a problem at parades and birthday parties with balloons.

Emily attends the Senior Plus program at Valley High School in West Des Moines, which works to transition students to the real world. In the mornings, she goes to job sites with the rest of her class, practicing skills like folding letters and setting up preschool classrooms. The afternoon focuses on life skills like laundry and cooking. Mary says the next step will be finding a job that appeals to Emily’s interests and keeps her attention.

Mary and Emily have faced many challenges together since she was diagnosed at age 6. For years, Emily reached developmental goals like walking and talking later than other kids. When the diagnosis came, Mary was relieved, not because she was glad to have a child with a disability but because she now had a label, a new direction and a whole lot of help.

Through the West Des Moines Schools and the Heartland Area Education Agency, Emily has had access to occupational and speech therapists and years in the special education program. But transitions can still be tough. When she had to go from the middle school to the ninth-grade building and then to the high school, she lost several months of learning each time while she adjusted.

Sometimes Mary is surprised by the things her daughter picks up on, until she remembers Emily is a teenager who spends her day with other kids. It just takes her longer to understand some things. Mary has learned to be patient while repeating answers to her daughter’s many questions.

“Ever since I was young, I’ve always had an open-minded perspective about people with disabilities—not looking at what they can’t do but at what they can,” she says.

While learning her daughter’s strengths, Mary had the support of other parents of children with disabilities. She encourages anyone with a special needs child to do the same. “It’s scary in the beginning,” Mary says. “If you isolate yourself, it can be even more stressful. You’re not alone.”

A Home Run

June Schrodt Taylor ’82 doesn’t have any special education training. She doesn’t have a child with a disability. Until a few years ago, she gave little thought to people with special needs. But now when kids with disabilities see her out in Frisco, Texas, they give her a big hug, especially on game day.

Taylor is the vice president of volunteers with the Miracle League of Frisco, a sports league that assists children with physical and mental disabilities in playing baseball, soccer and bowling.

Taylor’s interest in the cause began in 2006 as a member of the Community Development Board for Frisco. The group was planning a new park that included a five-plex of athletic fields. Two representatives from the national Miracle League organization approached them about transforming one of the baseball diamonds, and the board allocated additional funds for the project.

“I realized there was a need for these children to have this opportunity,” Taylor says. “And it’s not just for the children. There was a need for parents and family to see their children have this opportunity.”

Because she had led the task force to start the local soccer association several years earlier, Taylor volunteered to set up the association for her town’s Miracle League. She’s been involved ever since, now recruiting and training volunteers, called Buddies.

But Taylor first had to do a lot of learning herself. She reached out to special education teachers, physical and speech therapists and groups around the country who do similiar work. She learned how to best provide for different kids. Some need walkers or wheelchairs; others have Down syndrome or autism.

The Buddies are often young people themselves—teenagers from the local schools who need service hours. “Once they meet the qualifications for their volunteer hours, a lot of them continue to come back,” Taylor says. “They enjoy it. They start to have a relationship with the players and become friends.” Through her work, she has introduced many teenagers to kids with disabilities, broadening their understanding and respect for people who are different.

Taylor remembers how touching opening day on the Miracle League field was. The speakers cried, the parents cried, the Buddies cried. The kids were so excited to be out there in their crisp new uniforms. Taylor remembers, “We found out that some kids slept in their uniforms all week before the game.”

 

What is a developmental disability?

The term can refer to a diverse group of severe chronic conditions that impair learning, language, mobility, self-help and/or independent living. According to the Centers for Disease Control and Prevention, they can surface anytime between birth and age 22.

What are the most common?

Developmental disabilities fall into many categories. Two of the most common Intellectual and Developmental Disabilities (IDDs) include Down syndrome and Fragile X syndrome. Another common group that affects the nervous system is Autism Spectrum Disorders.

What makes a special needs individual so special?

“They can be a really positive force. They have a lot to offer,” says Esther Streed. “It just may be different from what we expect of other people. They can add strength to a family—and to a community. They can be so loveable and so frustrating, sometimes all in the same breath.”

What if I suspect my child has a disability?

Esther Streed, associate professor of education, says some disabilities are more medical and some more educational. If you’re concerned, call your doctor and your school district. Because it’s responsible for all children within its boundaries from birth to age 21, the district can facilitate early intervention services and assist in creating an Individualized Education Program (IEP).

What if my child is diagnosed?

Angela Lowenberg Jones ’04 has words of encouragement. “You were chosen. This child is a blessing from God. This child will teach you more about life than you have learned in all your years. It’s an experience that will fill your heart with joy.”

What resources are available?

Every state has a Parent Training and Information Center (PTI) or something like it. These help parents navigate the complex world of federally funded grants, educational agencies and special programs. They also help connect parents to other parents, who can be an invaluable resource. Visit parentcenternetwork.org to find the centers near you.

 

Read about Esther Streed, professor of education, has who devoted much of her life to advocacy for people with disabilities.