My Brother’s Keeper

Alison Bell, a mother who lives in Raleigh, is devoted to her brother, John, who has special needs. As a child, though, she sometimes felt ignored by her parents because her brother required so much attention. She also wonders if a time will come when her adult brother might need her to care for him.
Bell has a unique perspective on the issue. Like her mother before her, she is parenting a child with special needs while trying to meet the needs of her other children. Bell has two typical daughters and one daughter with Down syndrome. It’s a daunting task, she says, when one child requires extra attention.
Given her history, Bell’s sensitivity is keen. She tries to spend as much time as possible with her typically developing girls — Rachel, 10, and Natalie 12 — but their 6-year-old sister Nicole needs extra attention.

“I am always having to do things with Nicole, and I think that is hard for them,” Bell says.
Parents of children with special needs can have days chock-full of doctor’s appointments, insurance dilemmas and therapy sessions. Combine that with the needs of several typical children, and even routine daily living becomes a monumental undertaking.

A little sibling support goes a long way.
Siblings of special needs children can become resentful unless they receive some parental attention and the freedom to live their lives.
Don Meyers is the director of the Sibling Support Project of The Arc of the United States. Headquartered in Seattle, the program is a national effort dedicated to the interests of over six million brothers and sisters of people with special needs. Meyers has written several books on the subject and works globally to create awareness and support groups for the siblings of special needs children.
According to Meyers, attending to the needs of the whole family creates a win-win situation, since the siblings will know the child with special needs longer than anyone else in that child’s life.
“After the best special-ed program is over, it will likely be the brothers and sisters that will ensure that that child leads a dignified life and continues to be a meaningful part of the community,” says Meyers.
Despite this fact, Meyers finds that family care sometimes doesn’t include these brothers and sisters as part of the equation. “We need to get these children out of the literal and figurative waiting room” says Meyers.

Isolation and family division are major concerns.

Feelings of isolation are a common theme for parents and siblings of children who have disabilities or chronic illnesses. Unless a relative or paid caregiver can stay with the typical sibling or sibilings, attending social gatherings as a family is sometimes impossible.
Erica Dugar, a Cary mother whose 3-year-old son Brandon is autistic, says her 11- year-old daughter, Kaylee, is frustrated by the division of her family.
“Brandon does not do well with crowds, so we haven’t been able to both take Kaylee to the movies or to dinner. She misses that and wishes we could both be with her.” Good caregivers are expensive and hard to find, says Dugar, who has no family nearby.

Marianne Smith of Cary — the mother of Jake, 8, and Dean, 4 — faces a similar dilemma, but she is fortunate to have family close by. Dean who is autistic, is overwhelmed by crowds, so if Smith knows there is something his older brother wants to do or should be able to do, she makes arrangements in advance.
“Carnivals and state fairs are just things that we can’t do as a family,” says Smith.

Consequently, there are often times when one parent stays home with Dean while the other is with Jake, a trend that splits the family apart on a regular basis.
“I think a lot of families give up on trying and they end up not doing anything or going anywhere,” says Smith “It’s hard in the beginning because it can be embarrassing or it can be taxing. Things people do every day, like going to the mall and the grocery store, are challenging because kids with autism get overwhelmed and cannot be redirected.”
Kaylee Dugar says going out with her autistic brother or having friends over to the house is difficult because he acts out so much. She says her friends all have “regular” siblings and that makes her feel different.

Many children with special needs also have ongoing medical issues that require expensive treatments or lengthy hospital stays, which can put families in crunch mode for weeks, months, or even years at a time. This situation sometimes causes siblings to feel neglected.

Parents try not to treat their child with special needs differently.
Anything the parents of children with special needs feel, their typical children feel, as well. They are alternately frustrated, embarrassed, deeply in love, protective, resentful, guilty, sad, happy, anxious and grateful.

Dealing with that mix of emotions is challenging, but possible. Families in the Triangle who are coping well say they treat their child with special needs as “just another apple in the bunch.” Something Meyers advises families to do on a regular basis.

Eb Bailey of Apex says his 5-year old son, Michael, who has Down syndrome, is “a typical little brother who is sometimes a pest.”
“We’ve always tried to instill in Matthew, 10, that Down syndrome is just a part of Michael, it’s not Michael,” says Bailey. “A handicap is not the person; it’s just part of them.”
Meyers says it helps when the family’s life doesn’t always revolve around the child with a disability or illness. The Baileys, for example, enjoy spending time at Matthew’s soccer games.
Setting high expectations of all family members helps siblings feel less resentful. Patty Dudek, like Betsy Bailey, is on the board of the Triangle Down Syndrome Network. The Cary mom says her family treats her daughter, Megan, who has Down syndrome, like a regular kid.
“If I tell Kate (who is 8) she has to clean up, Megan has to clean up too,” says Dudek.

The future is scary for the siblings.
Siblings of special needs children learn to be good caregivers early on and often have real concerns about their future and the future of their sibling.
Meyers encourages parents to plan for the future and let all of their children know they are making plans for the child with special needs. If the family situation allows, parents should make it clear that typical siblings are free to follow their own dreams. If looking after their brother or sister with special needs is something they choose to do, siblings can make that decision out of love and not out of obligation, says Meyers, provided the child with special needs agrees with the arrangement.
“Give [the typical children] as many degrees of freedom as possible,” he adds.

Siblings of children with special often grow up to be some of the most compassionate, caring members of our society. Many of them enter helping professions. Every child interviewed for this article mentioned the need to embrace our differences and care for others. These children handle life’s burdens and emotional issues at tender ages. They know that good things can come in challenging packages, and that good health is a gift.
Attending to their needs is crucial, because, like their siblings, they are very, very special. — CP

SIDEBAR: The Siblings Speak Out
The brothers and sisters of children with special needs learn to accept the good with the bad. And they are wise beyond their years. Here’s some of what the children we interviewed had to say about their lives, their families and their siblings with special needs:

Kaylee Dugar is 11. Her brother, Brandon, 3, has autism.

“Every time I try to play he hits me. I feel upset because I want to be able to play with my brother.”

“I don’t get to help him that much because he won’t let me. I help other special needs kids.”

“I remember when I was little I used to get scared of special needs kids, but I’ve learned about how they are”

Rachel Bell, 10, has an older sister, Natalie, who is 12, and a younger sister, Nicole, 6, who has Down syndrome.

“Sometimes you have to stick up for her because children around you make fun of children with disabilities and you have to be brave and bold and tell them that she has special needs and is Down syndrome. It feels good. Once people know that you’re sticking up for someone, they are afraid to make fun of them because they know you are protective of her.”

“After lunch sometimes I cuddle with her and sit next to her. She is very fun and just because she has Down Syndrome doesn’t mean she is not a great sister.

“You have to have a lot of patience on the days when she’s not being the best behaved. She gets mad and tries to hurt you. You just have to realize that it’s not her fault and she’s just made that way.”

“… A lot of people, when they see people who are different, they laugh at them, like if they are in a wheelchair or something, and I smile at that person while other people are laughing. The least I can do is try to be nice to them and they will know that there are some people out in this world who will be nice to them and care for them.”

Matthew Bailey is 10. His brother, Michael, is 5 and has Down syndrome.

“He sometimes is kind of annoying because he pinches me.”

“He’s fun to play with and you can teach him a lot of stuff. He’s starting to dribble (the basketball) pretty well”

“He has a little trouble listening and says no a lot.”

“All in all, I think he’s a fun brother and you can learn a lot off him.”

Jeffrey Dudek, 13, has a sister Megan, 10, with Down syndrome and a sister Kate, 8.

“I remember how she was quite small when she was born and quieter than my other sister seems. She’s still quieter, but she has her own voice. When she wants something she goes straight for it.”

“Megan doesn’t embarrass me. But Kate does because she’s louder than Megan.”

“I think it has helped me learn how to take care of others because it really seems like I need to help her with a lot of stuff.”

“It’s not that different than other family lives. She’s just a regular part of the family.”