Family Harmony

By Ruth Zive

Like most parents, Lisa Bernstein of Thornhill, Ontario, juggles many demands. The difference is that much of her family’s routine revolves around one member: three-year-old Tamara, who has Down syndrome. “Between speech therapy, occupational therapy, early intervention and doctors’ appointments, there is not really much ‘down’ time,” says Bernstein, “and because I spend so much time with Tamara, I have to work doubly hard to make sure that Rayna, my six-year-old, gets the same support and attention.”

Bernstein is not alone. Parents of kids with disabilities devote immeasurable resources – energy, time and often money – attending to their children’s needs. Their children are labelled “special,” and with that in mind, parents struggle to level the playing field and access the services and supports that are required to ensure a good quality of life. In doing so, they may inadvertently sideline the needs of their other kids. In many cases, these needs are related to children’s impressions of their sibling, and the way that the sibling and all the effort exerted on his or her behalf shapes the family dynamic.

Research into the impact of having a sibling with a disability is ongoing. Common issues include feelings of loss and isolation when a parent’s time and attention is devoted to a sibling’s disability or illness. Kids may feel confused when parents and service providers, in an effort to shield them from possible stress, do not share information about their brother or sister’s challenges. They may feel further shut out if they don’t have the chance to talk with peers in a similar situation.

Siblings may also over-identify with the challenge at hand, fearing that they will “catch” a disability or illness. Or, they may feel pressured to achieve in academics or sports to “make up” for their sibling’s limitations. Sometimes, kids may feel guilty because they think they caused the disability or, conversely, because they were spared the challenge. These concerns can often persist into the teen years and adulthood.

Children who are asked to help care for a sibling with a disability or take on more household responsibilities than their peers may feel overwhelmed or compelled to grow up too fast. This is particularly true of older sisters, according to the Arch National Resource Center of the U.S. Department of Health and Human Services, which reports that while both brothers and sisters help to care for children with developmental disabilities, studies have shown that older sisters, especially, have increased care-giving responsibilities. They tend to participate less in their own activities outside the home and have more conflict with the child who has the disability.

How can parents ensure that all of their children feel special when some of them have been labeled special? The answer often relates to how the child with a disability is regarded and treated within the family. If the disability is characterized negatively, or treated with kid gloves, the other children in the household are likely to react with a sense of hostility, fear and even disdain. According to Debby Shimmerman of Toronto, Ontario, teacher and founder of Educare, a program for children with learning challenges, all children have strengths and struggles. “It is important for parents to normalize their child’s challenges by presenting them in this context.” For instance, a child with a disability may struggle with fine motor skills, but may have a wonderful sense of humour. And while a typically developing child may not have any obvious challenges, things like shyness, impatience, and even something as mundane as struggling to tie one’s shoes can help to characterize all challenges, frustrations and delays as normal and acceptable. If every child in the family has an opportunity to address their challenges with support and attention from their parents, there will likely be less antipathy toward their sibling with a disability.

Similarly, it is important for parents to create a forum for all of their kids’ strengths and talents to be highlighted in the family. Bernstein says, “Sometimes, without noticing, Tamara’s accomplishments attract more attention and accolades because she has worked so hard to reach each milestone. However, with our other daughter, we take for granted that she’s going to read, write, run, jump and progress at school. Sometimes, she doesn’t receive the same positive reinforcement.” Feedback helps to build a sense of pride and confidence. Although it may seem that typically developing kids learn skills and master tasks easily, they actually exert a great deal of energy to do so.

Sometimes, kids measure their own uniqueness against their sibling’s, and often, these observations are derived from their parents’ comments and judgments. “It was not until my second child was born and started cruising through the developmental milestones that I really understood the impact of my firstborn’s delays,” says Pearl Braddock of Toronto, Ontario, a mom of three. Her son has cerebral palsy. Often, parents of children with disabilities refer to their normally developing children as a barometer for progress. This can generate feelings of ambivalence in siblings of kids with disabilities. “I was delighted that my daughter was learning with such ease, but in some ways, her evolution highlighted her brother’s limitations,” explains Braddock. This tendency to compare leaves children with the impression that their growth and development is connected to that of their sibling with a disability, and it can arouse feelings of guilt. “Parents should guard against comparisons,” advises Shimmerman. “It is essential that each child’s development be treated as precious and unique and normal, even if, by comparison, it is not.”

Especially because children with a disability can require more time and attention, parents should set aside time each week for each child. “Even five minutes each day of ‘alone time’ will help a typically developing child feel as though their interests and needs are just as important as their brother or sister’s,” says Shimmerman. Take the time to ask what they are learning in school, what they did at recess, or what they like about their favourite cartoon.

Finally, it is important to acknowledge and embrace the gifts and opportunities that children with a disability can bring to their siblings’ lives. According to the Arch National Resource Centre, these include a heightened awareness and insight about the human condition; a sense of maturity and responsibility from successfully coping with a sibling’s needs; pride in their sibling’s learning and achievement; loyalty toward siblings and families; and appreciation for their own good health and welfare. These positive lessons can go a long way in helping a child to embrace all their sibling has to offer, rather than seeing only challenges.

“My brother taught me the meaning of unconditional love,” says Naomi Ben-Aroya, MSW, who now, as an adult, can reflect on her relationship with her brother David, who had developmental delays. “So much of who I am today can be attributed to my relationship with him.” She credits their parents for normalizing David’s involvement in their lives. “My parents made my siblings and I all feel ‘special’ and they did not focus on the fact that my brother was different. We were all treated as individuals with our own specific needs.” Ben-Aroya feels that having David in her life influenced her professional choice to help others, and also that of her older sister, who became a doctor.

Every child wants to feel valued. A formal diagnosis in one child need not diminish the exceptionality of another. With this insight, parents can ensure that all of their kids gain a sense of confidence and pride in their achievements. “I’ve realized that my younger daughter’s very typical, two-year-old delight at her messy finger painting is no less remarkable or worthy of praise than when her older brother masters a skill with which he has been struggling for months,” says Braddock. “I’ve learned to truly appreciate my daughter’s milestones even though I can essentially take for granted that she will reach them.”

Ruth Zive is a writer and non-profit consultant who lives in Toronto, Ontario, with her husband and five children. Her eight-year-old daughter, Julia, has Down syndrome. Zive has written for Flare, EPregnancy and Dance Teacher. She also operates an online speechwriting business, SpeechWhiz (www.speechwhiz.com).


TIPS FOR PARENTS

* Expose your children to differences so that they realize they are more common than rare. Socialize with families who have children with disabilities; find relevant play groups, get-togethers and programs (for example if your child has autism, contact autism groups in your city).
* Help siblings understand your child’s disability within the context of difference in general. For instance, if your daughter asks, “Why can’t Andrew talk even though he is five?”, compare Andrew’s speech delay to something your daughter struggles with. You might say, “Well, you know how it’s hard for you to do math? Everyone struggles with something, and Andy struggles with speaking.” You might use yourself as an example by offering, “I can’t follow a map well. That’s why I’m always getting lost; that’s my struggle.”
* Create opportunities for your child with special needs to support siblings in their interests and activities. Ask your child with a disability to make a banner to cheer on her brother at a soccer game, or help her bake a cake for her sister’s birthday.
* Find activities that all of your children can enjoy, such as hikes, picnics, board games or crafts.
* Make sure that your entire family is supportive. Relatives should embrace each child’s gifts, talents and qualities.
* Read books with your kids that highlight characters with a disability, such as We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen and Pam DeVito (Monarch Books); Are You Alone on Purpose? by Nancy Werlin (Thomas Allen); Our Brother Has Down’s Syndrome by Shelley Cairo, et al (Annick Press) and Special Brothers and Sisters, edited by Annette Hames and Monica McCaffrey (Jessica Kingsley).