Parent to Parent

Published 12:00 am Saturday, December 7, 2002

Parents of special needs children can't always feel upbeat about their situation in life.

Sure, there are resources all around them. Schools with programs, medical centers with support groups, communities with recreation and drop-in centers; places of work when the children grow older, too. Group homes, when they are ready for independence.

But, what about the families, who want their children -- all of their children -- to lead normal lives at home as long as they can?

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Parents who hold on to their children and hold back the thought of institutionalizing them.

They're on their own and there comes a time, when it is simply overwhelming. When nerves are frayed, patience exhausted and mother and father and child are at wit's end.

When that happens, a tiny voice may even whisper every special needs child's parent's worst fear that it's time to … "give up."

"No way," you say?

"Way," says Parent To Parent Connections. Self-doubt happens and when it does, there is a way out.

It wasn't always that easy to reach out. For instance, consider the plight of Loren and Norma Klaehn.

Fifty-years ago, there was no one to turn to, when their son, Bob, needed help.

Brain-damaged during the birthing process, their first-born child, Bob, needed help.

"We knew from the beginning there was a problem," Norma said.

A half-century ago, when a child was born with a severe handicap, the solution and very often the only option was to have the child institutionalized.

The Klaehns' baby suffered seizures; sometimes as many as 12 in 24 hours.

The Klaehns decided to keep their son at home. They would take care of him by themselves. It would be difficult, but their love made it necessary.

The Klaehns' farm along Interstate 90 mid-way between Elkton and Dexter would be their son's treatment center. What they lacked in professional training and education to deal with the developmentally disabled they would make up for in old-fashioned common sense and lots of TLC. Their very own tender loving care for their son.

Time passed and somehow, some way, it worked.

"We were pioneers," Norma said.

Ineligible for mainstreaming at the time in school, the Klaehns' son, Bob, grew up and went to the disabled activity center at Adams.

When two more sons arrived in the Klaehn family, the sons, Bruce and Jack, grew up and became a "great help," according to their mother in helping raise their handicapped brother.

But long before there was an Internet to surf for information and when support groups were few and far between, the Klaehns -- particularly Norma -- were on their own.

"We struggled," Norma said. "When Arc-Mower County came along, it was a big help to talk to other parents because there were always questions to be answered."

As Bob grew older, it became harder to satisfy his curiosity and to match his interests.

He spent time at the Adams Health Care Center, then the Adams Group Home and the Woodvale Group Homes in Austin.

The one support group of parents, Project Faith, dissolved about four years ago, leaving the Klaehns and other parents like them on their own.

"By then, we had learned a lot by teaching ourselves," Norma said, "but there was always more to learn and like all the other parents, we still needed support for what we were doing."

Norma also was deeply involved with the Parenting Resource Center of Mower County and its myriad services for families.

As time passed and her day-to-day role lessened, she became a resource for families as the voice on the other end of the telephone line when mothers and fathers called the Parent Warmline (1-888-584-2204).

When the Parent To Parent Connections was created, she was a natural for the role of matching parents with other mothers and fathers of special needs children.

"We still need to talk to someone who has the same problems that we do," she said. "There are tremendous services today in Mower County for children with handicaps. We are very fortunate our school districts and the Department of Human Services are responding to the needs of special children.

"There are always children out there with a unique problem for which there may be many diagnoses or a wide variety of those diagnoses and there are always situations to mitigate problems in an educational setting, communications and even a child care setting. Special children create special situations and parents have to talk about them."

Today, the Klaehns' son, Bob, lives at a group home in Austin.

"He's very happy and he continues to do new things all the time," Norma said.

The Klaehns' son is etched in the memory of treating the developmentally disabled in Mower County for several reasons. He was the first client at the Adams Group Home and one of the first special needs clients to live at Adams Health Care Center.

And the Klaehn family was arguably one of the first to raise a special needs child at home at a time when it was deemed necessary to place the children in an institution.

Norma peppers any discussion of how she was a "pioneer" in at-home care for a special needs child with terms of endearment for her son. What parent wouldn't for any child?

She said a handicap -- any handicap -- does not "overshadow the beauty and wonder of that child."

The over-riding goal in the Klaehn family always has been to "give him every opportunity to enjoy as normal a life as possible."

If the voice on the other end of the Parent To Parent Connections telephone line asks for advice, Norma is ready.

"Never put a cap on a child. Help them grow as far as you can," she said.

Deb Wiersma would never think of putting a cap on Dayton, her 4-year-old son.

Wiersma and her husband, Charley Sauke, have four children, ages 20, 9, 4 and 2.

Dayton has an educational diagnosis of autism and a medical diagnosis of pervasive degenerative delay.

"I knew this child had problems," the mother said matter-of-factly. "From the time he was born, but it was quite a shock when he was diagnosed the way he is. It was hard for the other children to understand, but we've tried to always treat him as one of the family, which he is.

"Our daughter, Cheyenne, 9, and Dayton do a lot of things together I think she has adjusted quite well to her brother and his special needs."

Her husband works full-time and she works part-time. Dayton goes to school half-days and a teenager provides child care in the home.

"That's a real problem," Wiersma said, "finding day care that will take handicapped children."

Woodson Community School and its multifoil programs for special needs children is an oasis for Wiersma; particularly the assessment Dayton receives and then matching resources to the child.

Since the original assessment two years ago, the mother has noticed a "world of difference" in her child.

But, the Parent To Parent Connections telephone is another resource.

"It's just a great way to share things with others, who may be going through what I'm gong through. Sometimes it can be overwhelming," she said. "When you talk to other parents of special needs children you can say 'Here is what I found out about this' and they will know what they're talking about."

Wiersma has been trained to take telephone inquiries from other special needs parents.

Wiersma relishes the opportunity to help other special needs parents.

"It helps me to help me to help other people. I'm just glad to be able to give back," she said.

Shari and Dave Heimer, of Adams, have three children. The oldest is 17. The youngest are 7 and 5.

Ethan, 7, and Caleb, 5, are children with special needs.

Like the other parents of special needs children, Shari routinely drops multi-syllable words to describe her two sons diagnoses. Asked for a an explanation that will be understood by all, the mother said her sons couldn't process speech sounds.

Speech therapy -- 2,000 repetitions of a specific sound such as the "kahh….." in "cat" were the recommended exercises.

The result was painful.

"We couldn't understand anything," Shari said.

Their eldest son did not have the problem, but both of the youngest sons did.

"We don't know what caused it. It's a mystery," said the mother.

A speech pathologist at Austin Medical Center was successful in recommending a treatment that, after long sessions at home and in school, produced results.

"Forty-five minutes of therapy four times a week in school and then one hour at home each night," Shari said, "but it was worth it. It pronounced good results for our sons."

The Heimers didn't have the Parent To Parent Connections Warmline to share their frustrations and their triumphs with other parents of special needs children.

They did have the Internet.

"I went on the Internet to contact people with children with our same problem," Shari said. "There weren't a lot of them because of it was kind of unique and the severity level was so different from any others.

"It would have helped to be able to share with other parents of children with the same problem because, beyond the health care professionals, you are essentially all alone in dealing with something like this at home."

Dave operates his own business and Shari works as a mediator for conciliation matters.

Their sons -- all three of them -- are in school. Except for the speech problems the youngest, Ethan and Caleb, are -- the mother's words -- "little terrors."

"It's just so frustrating when you think about it," Shari said. "Here you have two little boys with the same problem and they grow up and they can talk, but the brain can't process their thoughts into sounds, so nobody, not their parents, not even each other, can understand them.

"They couldn't get their needs expressed because nobody could understand them."

The triumphs to be celebrated in this family of special needs children aren't the same as other families, but they are no less real.

"Last month, Caleb, the 5-year-old, learned how to make the 'S' sound and we were really excited.

"Then, I got a call on the Parent To Parent Connections Warmline from a mother who said her 3-year-old girl with problems like my boys had said her first two words ever at the age of 3. She was excited and I was happy for her."

Karen Noterman tells the story of the time she asked a question of a friend who, like her, is the parent of a child with special needs.

"I asked her if there was a pill you could give a child that would change them to be like all other children would you give it to your child with special needs," recalled Karen. "She said 'No.' She wouldn't, because that would change who he is.

"That's the way I feel."

Karen and Dan Noterman live on a farm outside of Adams. They have five children, ranging in age from 12 years to 11 months. There are two boys and three girls in the family.

One of them is arguably the "star" and that is Willie, age 4.

He was the poster child for a March of Dimes Society campaign two years ago.

Every day he is a poster child for uniqueness, individuality, originality and being special.

He is a Down's Syndrome child.

His mother is a mentor for the Parent To Parent Connections Warmline.

"Mothers who have a new child who has special needs call," she said. "They are going down the same long, dark tunnel we did."

Fathers call, too. They are interested in knowing if it is all right to grieve, to feel "bad" about what happened to their son or daughter.

Mothers, on the other hand, want to talk and share, Karen said.

What all the parents, mothers and fathers, too, have in common, Karen said, is this: "Something you didn't expect happened in your life."

When her son, Willie was born, there was no Parent To Parent Connections Warmline. The Noterman family fumbled on their own.

Now, they're helping others.

Recently, one of the mothers Karen "met" over the Warmline asked if she could visit sometime.

"She wanted to meet in-person another mother of a child with special needs and see them together," Karen said.

For all the parents of special needs children, this parent is a poster mom for the service.

"It's the best thing to do when you have questions. Call somebody else who is going through the same situation. It's the best thing in the world," Karen said.

Shan (Jensen) Kehret enjoys those times, when strangers marvel at how smart is her son, Nathan.

When she tells them about the seven surgeries in his seven years to correct a cleft lip and palate, Mrs. Kehret enjoys even more to see the reaction.

Shan and Dayton Kehret have three children: a daughter, 12, and a son, 3, plus Nathan in the middle.

She works at Woodson Community School and her husband works for the Austin Parks, Recreation and Forestry Department.

Between his birth and three years of age, Nathan already had three surgeries. Four more came in the next four years.

"He was so tiny and fragile, when he was born," Shan said, recalling the child's vulnerability.

In the beginning, Becky Tennis-Hanson visited the Kehret home for the Parent To Parent Connections program.

Years later, the couple would also welcome Mary Beth Peterson into their home, when issues at school developed with their oldest child.

In both cases, the Parent To Parent Connections Warmline has been the family's connecting link to the outside world.

Now, Shan is a mentor, helping other parents of special needs children.

"If I would have had somebody there …," she said struggling for the right words and then settling for, "It's just a wonderful service for those who need it most."

Her parents, Barbara and Larry Jensen, sisters Shalane Hicks and Shelly Starry, other relatives and friends were also supportive of the couple's ordeal, but when she needed a resource, it was another knowledgeable voice on the end of the telephone who supplied it.

She hasn't forgotten and that's because Nathan is so "precious."

Seven surgeries later, Nathan is "Just perfect," Shan said. "I just wish you could see him. He's in the second grade and doing so well. We just love him so much. He's so precious."

It is a warm line repeated over and over when parents whose needs are special tell other parents about their children over the telephone.

Parents of special needs children may call the Parent To Parent Connections Warmline 1-888-584-2204. Trained and experienced parents of children with special needs, are available to connect with other parents of children with special needs ages birth through 21 in Mower County. A long list of support and other resources is available.

Lee Bonorden can be contacted at 434-2232 or by e-mail at