Tara Conley with S.I.B.S. (Supporting Illinois Brothers and
Sisters), Rebecca Kritzman and Sheila Swann-Guerrero offer these
tips for balancing parenting kids with and without special needs in
Provide knowledge. Give kids opportunities to
learn more about the implications of their sibling's disability.
Heed this warning though: Parents should make sure they are
providing age-appropriate information at each developmental stage.
Conversations need to be repeated as kids' ability to understand
and retain information improves. Parents need to initiate these
discussions, not wait for questions.
Get support. Be sure to get as much outside
support as you can and limit the caregiving responsibilities for
Seek professional help. Recognize when
typically developing children might need professional help.
Sometimes therapy can help put everything into perspective.
Take care of yourself. Parents need to take
care of themselves physically and emotionally. If you are not
dealing well with your child's disability, there is little chance
your other children will handle it any better.
Plan for the future. Including siblings in
plans will help take the pressure off of them. Your child needs to
know you are responsible for his siblings' future, not him.
Cultivate honesty. If your kid wants to vent
about his sister with special needs, let him. It is healthy to
confide in a safe person. Validate him without correction.
Use out-of-the-box resources. Does your child
like to go online? Find chat groups for children/teens. Does he
like to read? Research books that offer support for siblings. Check
out the Sibling Support Project at siblingsupport.org.
Be positive. Highlight the positive effects of
having a sibling with a special needs.
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A pensive look in my daughter's eyes jolts my heart.
"Mom, I've been thinking..." Elaina says one night after her
three sisters were tucked in bed. "You know I love Polly and
Evangeline, right? I love them so much. But, Mom, I've been doing
some thinking, and, well, I don't want them to live with me when we
grow up. Is that OK?"
Her biggest worries in life should be who to invite over for the
next playdate and what to take to school tomorrow in her lunch, not
something as weighty as being responsible for her sisters. But
Elaina is the oldest, she's smart, she has a type A personality and
she has two sisters with Down syndrome.
Without us ever discussing it, her intuition has hinted to her
that she may end up becoming their primary caregiver some day.
Siblings of special needs
Of the 53.9 million school-age children in the United States,
2.8 million have a disability, the U.S. Census Bureau reported last
year. In Chicago Public Schools, about 57,000 students have special
needs. Most of these kids have at least one sibling, children like
my daughter Elaina whose life at home is a bit different than her
She is expected to help her sisters with Down syndrome with the
daily activities. She tags along to therapy and doctor
appointments. She pushes her sisters by example to reach
Along with book bags and backpacks, siblings of kids with
special needs carry around the weighty pressure of being a role
model, a helper and an advocate, all while still being kids
I had no idea of the extent of Elaina's worries regarding her
sisters, but it made sense. I have concerns and worries about her
sisters. Why wouldn't she be working through the same issues?
I started to wonder how other parents navigate these topics.
Kim Hanna, mom to three girls and president of Gigi's Playhouse
Chicago, a Down syndrome awareness center, understands the
"I often find myself conscious of balancing the needs of our
children. There's no way to give each kid the same amount of time,"
she says. "There are simply not enough hours in the day. The
reality is that Jade (3 years old with Down syndrome) requires more
of our time, so the balancing act is identifying what the other two
girls need and ensuring they don't feel left in the cold."
Through Gigi's Playhouse, Hanna is working to provide quality
programming that supports not only individuals with special needs,
but also the whole family.
Gigi's Chicago currently collaborates with The
Belle Center of Chicago, a nonprofit organization dedicated to
supporting the interests of children with disabilities and their
families by reaching out to siblings through their Spectacular Sibs
Workshop, hosted once a month at the playhouse.
Rebecca Kritzman, a speech and language pathologist who runs Spectacular Sibs, says the workshop allows
siblings a safe place to talk openly and ask questions about life
with a sibling with special needs. They learn from each other, and
most importantly, realize they are not alone.
"Typically developing children want to be treated as individuals
with their own unique wants and needs, just like their siblings,"
Sheila Swann-Guerrero, coordinator for Advocate Medical Group
Pediatric Developmental Center's Sibshop, one of the founding
sibling support groups in Chicago, agrees.
"Carving out time specifically for typically developing children
is crucial. Provide opportunities to connect with other siblings
who have a brother or sister with a disability. Peer support is
powerful tool," she says.
Acceptance and concerns
Orla Levens, 12, a sixth-grader at a Chicago Public School on
the north side, has a brother with special needs. Lucas has a
chromosome disorder so rare that it doesn't have a name. It's
simply known as number 17p13.3.
"I'm just afraid that kids won't accept my brother for who he
is. I'm afraid that they won't understand. Whenever, wherever he'll
be, people need to understand him," she says.
Tara Conley, with S.I.B.S. (Supporting Illinois Brothers and
Sisters), says kids like Orla have concerns that typically mirror
their parents', and they'll be in their sibling's life longer than
Kids with siblings who have special needs were quick to point
out the positives about their brothers and sisters.
Orla likes her brother's sense of humor. "I guess a joy of
having my brother is he always makes me laugh."
When Kim Hanna's daughter Zoe, 6, was asked what she thought
about her 3-year-old sister having Down syndrome, her response was
simple. "Jade doesn't know how to be a kid with Down syndrome. She
just knows how to be awesome."
Julian Bane, 11, who has an older sister with Down syndrome,
says she's learned a lot from her sister. "I love how Quincy works
so hard to get good grades and how she is so concerned about
friends, well, really any people, who are sick or injured."
I get it.
My kids have learned important lessons early, things like
compassion and acceptance and an appreciation that every person on
this planet is special simply because they are here, lessons I
didn't learn until I gave birth to a child with Down syndrome in my
Parenting both typically and atypically developing children is a
challenge, but then what parenting relationship isn't a
My daughter Elaina's worry over the future was a huge wake-up
call for me. Not only is it my duty to ensure my children with
special needs are growing and reaching their potential, I must also
keep my typically-developing children in mind.
The bottom line is this: it's my job to make sure all four of my
children are given a chance to live their lives fully.
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