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Special Siblings
Disabled and chronically ill children aren’t the only ones in the family with special needs
By Cynthia Marshall Schuman, December 2007
Photo by Brad Elman
You can hear the devotion in Tracy Beaufort Whitehead’s voice as she describes the routine that is part of every day for her and her 12 year-old son, Eric. Eric was diagnosed with Type I diabetes when he was 2 years old and has worn an insulin pump since he was 5.
“Starting in the morning, we check blood sugar; we check about 10 times a day,” the San Jose parent explains. Every three hours starting when Eric wakes up at around 7 a.m., the boy pricks his finger to obtain a reading. He checks at least twice during the school day and if his score is out of range, his mom is contacted for directions.
“The school will call me if Eric’s blood sugar is high or low. They have to report to me what they do, so I’m on call every day with either my cell phone or my home phone,” she says. The monitoring continues long after the rest of the family has gone to bed. If Eric’s daytime blood sugar has been erratic, Beaufort Whitehead will get up at 2 or 3 in the morning to check it again while the rest of the family sleeps.
And that’s only part of the gig; in addition to checking Eric’s blood sugar, every morsel the boy ingests is scrutinized for its carbohydrate count. Too many carbs will throw his blood sugar out of balance.
With all of this extra attention for Eric built into the family’s daily schedule, who could fault his 10-year-old sister, Taylor, if she felt slighted?
When a child is chronically ill, develops a catastrophic disease, or has a disability or learning disorder, he or she typically becomes the center of attention. The shift in priorities affects the rest of the immediate family. While Taylor has never known life without her big brother having diabetes, Beaufort Whitehead still senses some occasional jealousy.
For example, when Taylor was 5 years old, she developed a bad case of the flu and for three or four days was given a great deal of attention as her parents struggled to get her fever down. By the fourth day, Taylor was feeling better. Only then, her brother started coming down with the same thing.
“She’s feeling better, but she starts crying,” Beaufort Whitehead recounts. “I said, ‘Honey, what’s wrong,’ and she said, ‘I loved all the attention I was getting.’ She clearly noticed the fact that she was getting looked after just as carefully as he gets looked after every day.”
On the plus side, Beaufort Whitehead believes that Taylor is more mature than other kids her age. “Diabetes or any chronic illness forces a child to become more responsible more quickly and that probably rubs off on the siblings as well. My expectations for my son are pretty high and my guess is that I have those same standards for Taylor,” she says.
The girl is also sensitive to signs that her brother’s blood sugar is low. “She can look at him and know that his blood sugar is low. They’ll be playing in their rooms and Taylor will come in and say, ‘Mom, Eric’s acting really naughty. I think his blood sugar is low. Nine times out of ten, his blood sugar’s low,” Beaufort Whitehead relates.
Respite for Brothers and Sisters
Maturity beyond one’s years and heightened perceptiveness are common qualities of siblings to special-needs kids, says Leslie Vasquez, M.A who facilitates Sibshops for Santa Clara-based Parents Helping Parents. Sibshops are part-support group, part-play group and was developed for the brothers and sisters of children who are in some way disabled.
“The idea is mostly for it to be a fun, recreational day for kids, so we have a lot of recreation-type activities,” explains Vasquez. “We usually do an art activity, sometimes a cooking-type activity, games. We have pizza for lunch and then we usually do one or two peer-support activities where they get the chance to express themselves, talk about what’s happening in their lives – the good parts and the not-so-good parts.”
Sibshops began in 1982 and are offered in all 50 states, England, Ireland, New Zealand, and Japan. They are the brainchild of Don Meyer, M.Ed., who heads up the Sibling Support Project in Seattle, Washington. “One of the real joys of working with sibs is that they can be a very insightful, thoughtful, others-oriented group,” he explains. Unfortunately, they are also often overlooked by the healthcare system, even those that claim to offer family-centered service.
“A lot of what passes as so-called family-centered care is, at the end of the day, parent-centered care or honestly, mother-centered care,” he contends. In fact, the whole range of feelings that parents may have about their child with special needs – the anger, frustration, sadness, fatigue – is usually felt by the child’s brothers and sisters as well. Left unchecked, these feelings can develop into full-blown mood disorders, such as anxiety and depression.
Having a sibling who is seriously ill or handicapped can be a real loss of innocence, according to Joanna Fanos, Ph.D., founder and director of the Sibling Center at California Pacific Medical Center in San Francisco.
“A normal kid looks up to their parents and thinks, ‘Oh, they’re omnipotent and they can do everything and dad can fix anything,’ but in this situation, the parents can’t fix it,” she says.
Not only can the parents not fix the unwell sibling, but they can get so caught up in that child’s needs that they unintentionally neglect the other children. “Well siblings of children with chronic or serious illnesses can be ‘forgotten’ while the family’s attention is focused on the sick child,” Fanos says. According to statistics from the Lucile Packard Foundation for Children’s Health, Santa Clara County is home to approximately 23,000 disabled kids – and most of them have siblings. That’s too many kids to let slip through the cracks.
Finding Ways to Cope
Melinda Jasper, 22, recalls feeling isolated when she was growing up in Sunnyvale with her brother David, now 25. David has a genetic disorder called tuberous sclerosis that can cause a variety of symptoms, which for David include intellectual disability, seizures, tantrums, and compulsiveness.
“[David] went through different phases when I was little. If he had a tantrum, he would push me, he would just go around knocking things over, but he would push me, so I had this kind of reflex, like, as soon as he had a tantrum, I would just like drop to the ground. It was kind of like a fire drill,” Jasper recalls.
“Usually, I couldn’t have friends over because it wasn’t a very comfortable situation. Even my across-the-street neighbor knew more about him, but still, she didn’t really feel comfortable. That was kind of hard for me because I wanted my friends to accept it, but it was just too different for them.”
Melinda’s mom, Amy, tried to alleviate the situation by outfitting the bedrooms of Melinda and her younger brother Scott as “independent living centers,” complete with couches, televisions, computers, and electronic games. David stayed out of their rooms.
Melinda also found respite in babysitting and enjoyed close relationships with the families for whom she sat. “I really liked babysitting because I was a part of another family and I felt really normal.”
Amy concedes that some families in their situation might have opted to institutionalize the atypical child in the name of preserving the rest of the family unit. Jasper says that she “wouldn’t blame” families who have taken this route.
Apart, but Still a Family
This is the path chosen by the Horowitz family of Los Altos, whose middle daughter, Mariah, is severely autistic. Mariah’s mother, Felicia, says that Mariah, 16, has very limited language skills and is prone to tantrums.
“It was very difficult to have one kid have an activity they needed to get to – even getting [younger daughter] Sophia to school on time – if Mariah was throwing a tantrum. You can’t just throw a tantrumy kid in the car with the typically developing kid and get there on time safely. It was just sort of difficult to manage a family and manage autism,” Horowitz explains.
For the past five years, Mariah has lived at Achievekids, a private special-education school in San Jose. She boards at Achievekids during the week and comes home on weekends. “Everybody’s close. We hang out with her. Her favorite place is the Santa Cruz boardwalk and we’re often there on the weekends with her. It’s as normal as normal can get, considering our personal situation.”
Even though they live apart, Mariah’s 17-year-old sister Julia shares a close bond with her challenged sister and that relationship has led Julia to work with other special-needs kids. She’s a counselor at Camp Costanoan, a residential facility in the Santa Cruz Mountains for children and adults with physical and developmental disabilities.
“Because of her sister, Julia understood the disability and felt quite comfortable with that segment of our population,” Felicia explains. “They’re very close. I mean, they’re very, very, very close. If Julia’s around and if Mariah has a need, she will always go to Julia first.”
Business as Usual
Aaron and Spencer Elman, also from Los Altos, share a similar closeness. Spencer, 13, has what is termed “general developmental delay.” Medically speaking, this means that Spencer has not reached certain physical, intellectual, or emotional milestones common to other children his age. For Spencer in particular, this plays out as speech, language, and motor issues. They are hurdles to be sure, but they have not prevented “Spence,” as the family calls him, from enjoying life with his 16-year-old brother, Aaron.
Aaron’s approach with Spencer is no-nonsense. “[Aaron] loves his brother and he loves his brother as he is and he’s always taken the approach that Spencer is Spencer and his friends need to accept Spencer as he is and he’s not embarrassed by his brother,” says the boys’ father, Brad Elman.
The two boys are something of an Odd Couple. “One of the ways that Spencer’s special needs manifest is that he’s very routine-driven, very orderly, and Aaron’s a typical teenaged boy. So Spencer gets up at 6:30 every morning, showers, gets himself ready for school, wakes Aaron to make sure that he gets along with his day. Sometimes, Spence will remember when Aaron races out of the house without something. ‘Aaron, you forgot your lunch. Aaron, you forgot your keys. Aaron, you forgot your helmet’ – whatever it is,” his father recounts. “It’s cute, the way Spence supports Aaron.”
This care-taking behavior occurs in even the youngest of children. Three-year-old Siya Agrawal watches carefully over her twin, Diya, who has cerebral palsy. From the waist up, the two girls are practically identical. But Diya’s legs do not serve her. “She cannot sit or walk or even crawl by herself,” says her mother, Deepika. “To move around the room, she needs assistance.”
Though Siya is the smaller of the two girls, she is ever the protector, cooing over her sister, admonishing her, and helping their mother care for them both. “She is like my little helper. I think she’s like a second mom to Diya sometimes. She’ll say, ‘Diya, you’re not allowed to touch that,’ ‘Don’t cry, Diya,’ and ‘It’s OK; mommy’s not mad at you. If you say sorry, mom won’t be mad at you anymore,’” their mother relates.
In addition to being influential relationships, the ties between a person with special needs and his or her siblings are perhaps the longest-lasting that any of them will have. Meyer of the Sibling Support Project observes that, “this is a relationship in excess of 65 years. After the best special education program is a distant memory and mom and dad aren’t there to look after the affairs of the family member who has special needs, it will likely be the brothers and sisters who will assure that they lead a dignified life, living and working in the community.”
-- Cynthia Marshall Schuman lives in Mountain View, CA.
Signs of sibling distress
Joanna Fanos, Ph.D., founder and director of the Sibling Center at California Pacific Medical Center, advises parents to watch for these signs that all is not well with your healthy child:
• Anxiety about being sick or getting sick or pretending to be sick.
• Excessive dependency like clingy behavior or, conversely, withdrawal.
• Either acting out or the opposite, not complaining at all; the quiet ones are the ones that get missed.
• School problems -- either failing or the reverse, escaping into studies.
• Loss of appetite or overeating.
• Taking on a developmentally inappropriate adult role.
• Regressive behavior.
• Excessive concern for others.
• Frequent accidents. This is a sign of distraction, worry, or not taking care of themselves.
• Sleeping difficulties.
• Foreclosure of future goals and hopes, especially when there’s a seriously ill child in the family. The parents might say, ‘Let’s just live for the moment,’ which works for the parents and the sick kid, but not for the siblings.
• During the teenaged years, alcohol or drug abuse.
• Dependent or abusive relationships or avoiding intimacy all together.
Support for sibs
• Being the Other One: Growing up with a Brother or Sister with Special Needs, Kate Strohm (Shambhala, 2005) describes the challenges faced by siblings with special needs, based on the author’s research and personal experience.
• California Pacific Medical Center in San Francisco sponsors the Sibling Center. www.cpmc.org/services/sibcnt.html. 415-600-3515.
• Parents Helping Parents in Santa Clara, CA hosts Sibshops. For more information, visit www.php.com/ or call 408-727-5775 ext. 144.
• SchwabLearning.org offers several documents about sibling issues. From the home page, www.schwablearning.org/, select “I need to help my family cope.”
• The Sibling Support Project is directed by Don Meyer. www.siblingsupport.org/.
• The University of Michigan Health System’s web site contains links to numerous resources for siblings. www.med.umich.edu/1libr/yourchild/specneed.htm.