- The Washington Times - Saturday, November 20, 2004

Matthew Hartung is used to answering questions. He has been getting them his whole life. Sometimes it is a stranger in a public place. Sometimes it is a friend who may not have visited the Hartung home in Gaithersburg before.

Either way, Matthew, 9, has a reply as to why is oldest brother, Warren, 19, does not speak and why his sister, Emily, 15, prefers Disney videos to MTV videos.

Warren and Emily both have autism. Matthew and brother Graham, 12, are typically developing children.

“I explain to people that they are handicapped,” Matthew says, “but I treat Warren and Emily just like anyone else.”

When a sibling has a disability, the whole family must adjust and adapt. The whole family must plan ahead, whether it is about dinner at a restaurant or what will happen in 25 years. It is a situation that requires compromise and compassion, says Susan Hartung, the children’s mother.

After 21 years in the same house, Mrs. Hartung and her husband, George, recently moved the family to a much larger house to give everyone more space.

On a recent Saturday, Warren was listening to his tape player in the family room, and Emily was watching “The Jungle Book,” in the first-floor office. Graham and Matthew and half a dozen of their friends bunkered in the basement, then raced into the yard for an impromptu game of baseball.

“It has always been there,” Mrs. Hartung says of the situation. “It is all they have ever known. When Graham and Matthew were younger, it was just one big jumble of kids. But now, it is more of an issue.

“I try to make sure there is separate time for the younger boys,” she says. “I’ve tried to structure things to minimize resentment. The embarrassment factor can be way high.”

Making sure that the siblings of a special-needs child know what the situation is and understand how to deal with it is crucial, says Donald Meyer, founder of the Sibling Support Project of the ARC of the United States.

The sibling relationship could last longer than the one with parents, spouses, classmates or caregivers, so it is important to foster understanding on both sides, he says.

A generation ago, a disabled child might have been sent to a residential program, Mr. Meyer says. Today, most families prefer that a child with disabilities be part of the family and community.

While every family has to navigate what is right for them, he says, every family should acknowledge the feelings of the typical child. Among them: guilt, embarrassment, isolation, worry about the future andthe desire to overachieve.

“Siblings can feel guilt about surpassing an older sibling in abilities or about moving away from home,” Mr. Meyer says. “Sometimes siblings feel it is their job not to bring any more heartache on Mom and Dad.”

Mr. Meyer has also seen some common traits in children who have grown up with a special-needs sibling. They often have a sense of maturity, compassion and loyalty, he says.

“They have had to have responsibilities that many kids their age haven’t even thought of,” he says. “They can’t help but have different insight and values, a sense of tolerance and an appreciation of ways people are different.”

Suzanne Davis of Chevy Chase sees that compassion in her son, Hunter, 10. She and her husband, Tim, are parents of twins Hunter, a typical fourth-grader, and Cooper, who has a neurological disability. Younger brother Spencer, 4, is also typically developing.

“Being a twin, this has always been there in front of him,” Mrs. Davis says. “I think he has touched a lot more people’s lives because of his brother. He is in tune with other people with special needs. There is a man we know with Lou Gehrig’s disease who we see when we go skiing every year. Hunter has become his buddy.”

Judy Karasik of Silver Spring sees some of those traits in herself. She, along with her brother, Paul, recently wrote the book “The Ride Together: A Brother and Sister’s Memoir of Autism in the Family,” about growing up with their brother, David, in the 1950s, 1960s and 1970s.

“I think I learned to translate among groups of people,” Ms. Karasik says. “I think deeply you wish there had been a translator for David.”

Family roles

Rachel Cunningham is 3 years old, but is starting to understand the differences between herself and her sister Lindsey, 5. Lindsey has a seizure disorder that has resulted in developmental delays. Rachel and her brother, Tyler, 7, are typical children.

“Rachel will ask me, ‘is Lindsey a big girl or a little girl? Well, if she is a big girl, why doesn’t she talk?’ ” says their mother, Lisa Cunningham of Vienna. “These are big girl/little girl things. I try to explain it in a way she can understand. Even at 3, Rachel has taken on the ‘big sister’ characteristics. It is hard for me, but it’s not such a bad thing.”

Tyler, meanwhile, is all big brother. Lindsey occasionally still has seizures, a frightening situation that goes on for a few minutes, but afterward Mrs. Cunningham must devote hours of extra attention to her older daughter.

“When Lindsey has a seizure, she is miserable,” Mrs. Cunningham says. “She needs to be held for hours, and I can’t do other things for the kids. I will apologize to Tyler later. He is nice about it, but you can tell he is thinking, ‘Why don’t I get that kind of attention?’ ”

Tyler has displayed maturity throughout the whole process, Mrs. Cunningham says.

“Tyler knows that Lindsey is off-limits when it comes to roughhousing,” she says. “I never taught him that. Both he and Rachel are gentle with her. He gets the concept of a disability, and he is not embarrassed by it. It’s still his sister. I test him sometimes, looking for signs if he is embarrassed. I want to nip things in the bud.”

Mrs. Cunningham says that she and her husband, Bob, have tried to make sure that Rachel and Tyler get individual time. Mrs. Cunningham says she will take Tyler to a movie or lunch, or even just sit with him while he does his homework.

Since Rachel is still in half-day preschool, she still gets her one-on-one attention when Lindsey goes to her school or her various therapies or activities.

It has taken the Hartungs years to balance out family time versus individual time, Mrs. Hartung says. She made sure early on that all four children knew how to swim, so that became an activity the whole family could do.

As Warren and Emily grew older, the family has taken advantage of respite services, which provide care for the special-needs children. This means the parents are able to attend more of Graham’s and Matthew’s sporting and school events.

About three years ago, Warren and Emily stayed at home with caregivers while Mr. and Mrs. Hartung took the younger boys to Disney World.

“I had a lot of guilt about not taking the older kids,” Mrs. Hartung says. She says she wants to give Graham and Matthew different experiences.

The younger boys have since gone on two more vacations with their parents.

“I think it has opened up a whole new world for them,” Mrs. Hartung says.

Seeing it both ways

Graham and Matthew have also spent time learning what it is like to be disabled. They attend a sibling’s night at Emily’s school, Ivymount School in Rockville, each year.

In addition to a pizza party with children from families similar to theirs, sibling night includes activities such as seeing things through Vaseline-smeared lenses or trying to pick up a pencil with big, heavy gloves, says Sherrie Vavrichek, coordinator of social work and counseling at Ivymount.

The private school serves children from preschool through age 21 with a variety of special needs.

“Sibling night gives some of the kids great insight into what it is like to be disabled,” Ms. Vavrichek says. “But typical kids, even with a greater sense of empathy, are still going to go through feelings of anger and embarrassment.”

Ms. Vavrichek says she tries to give siblings strategies for discussing their concerns with their parents.

“I encourage them to talk to their parents, to compromise,” she says. “Most of them understand this is their fate, but they also don’t have to squash their personal needs.”

Mr. Meyer has developed Sibshops, a series of workshops that are run in schools and hospitals nationwide. The groups are recreation-based, peer support groups that address the good and not-so-good parts of having a special-needs sibling, he says.

“The vast majority of brothers and sisters really don’t need therapy,” Mr. Meyers says. “We want the siblings to have fun.”

Ms. Karasik says that when she was growing up, she didn’t necessarily want advice.

“My family was different,” she says, “but it was also different from other families like mine. Everyone has got to deal with their brothers and sisters themselves.”

Ms. Karasik says that how parents cope with the situation will make a huge difference as the children grow up. Her parents “handled it well,” she says. She and her two brothers were able to go about their lives being who they were without making David’s disability the focus of the family, she says.

Ms. Karasik says it was often hard to have friends over. However, she realized that if someone were put off by the situation, then they were not a true friend.

“As a consequence, my best friend now is someone who I have known since third grade,” she says. “Later, I found out it wasn’t as hard for my friends as I thought.”

When the Hartungs recently moved, it was within the same school district in order to keep the continuity for the younger boys. Graham and Matthew’s many friends run in and out of the house, aware but relatively unfazed by the situation.

Mrs. Hartung says she was recently touched by seeing Matthew patiently helping Emily with her homework.

“My husband and I have made arrangements for Warren and Emily when they are older,” Mrs. Hartung says. “I have told the boys, ‘You can pay someone to watch Warren and Emily, but not love them. I hope they will always be a part of your family.’ ”

More info:

Books —

• “The Ride Together: A Brother and Sister’s Memoir of Autism in the Family,” by Paul Karasik and Judy Karasik, Washington Square Press, 2003. This book is a touching and sometimes funny look at life with a disabled sibling in suburban Washington from the 1950s to the present.

• “The View From Our Shoes: Growing Up With a Brother or Sister With Special Needs,” by Donald J. Meyer, Woodbine House, 1997. This book is a collection of essays by siblings of children with special needs.

• “What’s Wrong With Timmy?” by Maria Shriver, Little, Brown and Co., 2001. This is a beautifully illustrated children’s fiction book in which an 8-year-old girl learns to understand and accept a disabled friend.

• “The Normal One: Life With a Difficult or Damaged Sibling,” by Jeanne Safer, Delta, 2003. The author uses her experience growing up with a disabled sibling, as well as the experiences of 60 other subjects, to show the concerns, challenges and personality traits of children growing up with a special-needs sibling.

Association —

• Arc of the United States, 1010 Wayne Ave., Suite 650, Silver Spring, MD 20910. Phone: 301/565-3842. Web site: www.thearc.org. The Arc is the national organization for people with mental retardation and other developmental disabilities and their families. The organization advocates for families, has local chapters and support services and information. The Sibling Support Project of the Arc (www.thearc.org/ siblingsupport) offers a list of local Sibshop workshops, listservs and other resources.

Online —

• The Family Village (www.familyvillage.wisc.edu), on online community of disability-related resources sponsored by the University of Wisconsin, has links to topics of many interests for families that include special-needs children. The site also has discussion boards.

• The Web sites of local Arc chapters offer phone numbers, ideas and a network of resources for families. Among them: the Arc of Montgomery County (www.arcmontmd. org), the Arc of Prince George’s County (www.thearcofpgc.org) and the Arc of Northern Virginia (www.thearcofnova.org).

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