LSJ article

Chris Holmes
Lansing State Journal


Published January 13, 2006
[ From the Lansing State Journal ]

 

Meaningful memory:
Son's disability spurred the idea for book

By writing about her son's struggle with cerebral palsy, a mid-Michigan mom hopes to elevate disability learning


By writing about her son's struggle with cerebral palsy, a mid-Michigan mom hopes to elevate disability learning

By Kathleen Lavey
Lansing State Journal

Early in 2003, Judy Winter was ready to write a how-to book. Mother to a son with cerebral palsy, she wanted to help other families learn to deal with doctors, therapists, special education and the 24/7 health care that many special-needs kids require. Then Eric, 12, died of pneumonia on Feb. 16, 2003. His mother shelved the book.

"I didn't know if I would ever write again," said Winter, of DeWitt, who has made a career out of writing about and for families with special needs.

Winter simply took time to grieve.

She and her husband, Dick, an accountant, established a summer music camp for people with disabilities. Daughter Jenna, now 21 and a recent graduate of the Brooks Institute of Photography in California, stayed in touch as much as possible.

Slowly, Winter realized that writing the book was the best way to honor her son's memory.

"Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations" (Jossey-Bass, $15.95) comes out in early March. It's a 252-page bible including resources, tips and personal stories from the Winter family and others.

"The book was a promise I made to Eric when he was born," she said. "I knew I wanted to raise Eric to be as valued as Jenna. But everything out there was not about the value of children with disabilities, but about limitations."

An estimated 8.5 million Americans have disabilities, many created by accidents or illness. Eric, born Sept. 25, 1990, was diagnosed at birth with cerebral palsy, in which brain damage or injury causes a lack of motor coordination. Eric used a wheelchair and had difficulty with speech.

Winter soon realized she would have to become her son's advocate, resolving to give him a normal life that included everything from trips to the grocery store to learning music.

They got used to having other people stare at Eric's wheelchair and learned to brush it off.

"Staring is so unnerving," she said. "I told Eric we were teachers. I believe each family's role is to do their best to increase awareness."

She met many times with school officials to design what is known as an individual educational program, working to make sure Eric studied in regular classrooms rather than in special education classes, segregated from most students.


She researched various therapies and enrolled Eric in different programs that had helped others with cerebral palsy, including music therapy at Michigan State University's Community Music School.

 

Mutual benefits

Cindy Edgerton spent years as Eric's music therapist and saw both mother and son grow as a result.

"It's the confidence she has," Edgerton said. "All parents need to realize that they are with their child 24 hours a day, seven days a week, and they truly are the ones that know their children best."

Winter's book is divided into sections with advice for each stage of a child's life from birth onward. It includes a "special needs bill of rights" for kids with disabilities, one for their siblings and one for their parents.

"We did a lot of things as a family," Jenna said. "I was never ignored." She would sometimes take her brother shopping or to the movies.

"He loved shopping for clothes," she said. "He loved to buy us stuff at Bath and Body Works."

The book includes stories from her family as well as stories from families of children with autism and other special needs. It also includes plenty of advice to help families give siblings the attention they deserve and to keep a couple's relationship intact.

"It is so important to add some normalcy back into your life," Winter said. "It takes some juggling and some planning, but you can do it."

 

Learning more about disabilities

Sometimes, it's difficult for people who don't know much about disabilities to know what to do when they meet someone who has one. A few tips from Judy Winter:

  • Don't ignore the birth of a child with a disability. "People think it's a fate worse than death," Winter said. "It's not." Send a card, flowers or balloons as you would for any birth. Or ask someone close to the family what the family would appreciate.
  • Be honest. It's better to say something and make an attempt from the heart rather than to say nothing at all.
  • Educate yourself. If someone you know is newly disabled, look for resources on the Internet and in bookstores. Join a support group and learn about the issue.
  • Don't stare at people with disabilities. If your children stare, don't hustle them away. Stop them from staring, then discreetly use the situation as a starting point to talk about disabilities. "You can tell them as much as you think is appropriate for their age," Winter said.

Music therapy camp at Michigan State

As a memorial to their son, Dick and Judy Winter worked with Michigan State University's Community Music School to create a music therapy camp for people with special needs and their siblings. Details:

  • The fourth annual camp takes place June 13-15 at the Community Music School in East Lansing.
  • Camp sessions include such activities as playing xylophones and tone bars, using hand chimes, moving to the beat, percussion improvisation and song writing.

To learn more about the camp, contact Cindy Edgerton at 353-6426 or e-mail her at edgerto3@msu.edu.

To Read

  • "Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations," by Judy Winter. It's slated for an early March release by Jossey-Bass; cost will be $15.95.
  • "Don't Call Me Special: A First Look at Disability," by Pat Thomas (Barrons, $6.95). For kids ages 4-8. Explains physical disabilities and is a good resource for any family.
  • "What's Wrong with Timmy?" by Maria Shriver (Little, Brown, $14.95). Introduces children to the concept that some have different mental capabilities.
  • Special-needs advice Judy Winter's book offers plenty of tips for families with children who have special needs.

Among her top pieces of advice

  • Believe in your child's value, no matter what. "We are a society that worships perfection," Winter said. "So much is coming at you telling you your child's value isn't as high as another child's. Connect with your child, and believe in your child."
  • Look beyond disability. "Eric was composing music before he died. He loved to cook. He loved to travel," she said of her son, who died at age 12 in 2003. "These children are too often defined by their disabilities."
  • Ask for help. Too often, families who have children with disabilities find themselves providing seven-day-a-week, around-the-clock care without regular time off. "You need good team members. You need respite. You need date nights. We need to take the shame out of asking for help," she said.
  • Keep a sense of humor. "It's really important to be able to laugh," Winter said.
  • Jenna Winter also has a tip for siblings: Embrace your brother or sister as he or she is. "As hard as it is sometimes, just enjoy it," she said. "You will learn things you'll have for the rest of your life. It's a gift, even though at times it might not seem like it."

'Special needs bill of rights'

Judy Winter's "special needs bill of rights," from "Breakthrough Parenting for Children with Special Needs":

 

You have the right to ...

  • Be treated with dignity and respect.
  • Celebrate your birth.
  • Grieve the loss of a life without special needs.
  • Move about freely in society.
  • Be seen as a person first, not as a disability.
  • Obtain a good education, including higher education.
  • Pursue your dreams, too.
  • Be proud of your achievements.
  • Live a full and productive life.
  • Be included in important decisions made about your life.
  • Ask tough questions, including "why?"

Contact Kathleen Lavey at 377-1251 or klavey@lsj.com.