Rosenblum, Star Tribune
Children growing up with
siblings who have special needs share how those bonds sometimes
scar, but more often enrich their lives.
They grow up fast, as
keen observers of siblings who may never grow up at all. They learn
how to stuff their needs, choose friends carefully and steel themselves
against the inevitable comments from observers:
"What's wrong with
"Why is your brother
But living with a sibling
with special needs grants them gifts as well. Maturity. Compassion.
Humor. Selflessness. Gratitude in small miracles such as the ability
to throw a ball, use the bathroom by themselves, plan for college.
Look around you. Think
about the families you know. It is likely that you can easily name
friends, neighbors or co-workers whose lives are defined by challenges
that take your breath away. A child with cancer. A child who will
never walk or who can never live alone.
But how often do any
of us look past those parents and children to the "others"
-- the brothers and sisters carrying the heavy, and often silent,
burden of being born healthy?
"They are old for
their ages," said John Guthmann, 51, of St. Paul. "They"
are John and Teresa Guthmann's twins, Abby and Andy, precocious,
delightful and almost 14. Their 17-year-old brother, Alex, was born
with a severe genetic disorder that reduces him to crawling, making
unintelligible noises and wearing a diaper. Abby and Andy describe
their brother fondly as "a giant toddler."
For as long as they can
remember, the twins have been Alex's best friends and defenders.
"I sometimes get really mad when we're out and people stare
at him," said Andy, who, with Abby, is an eighth-grader at
Capitol Hill Magnet. "A girl asked me, 'Why is he so stupid?'
I just try to get in the way if they're staring."
Abby sometimes tries
to explain Alex's condition. Other times, she pulls out her mischievous
sense of humor:
"Once, a little
girl came up and asked 'What's wrong with Alex?' I told her: 'Mosquito
bite.' She ran screaming to her mom."
The twins have lived
this way for so long that they don't realize how unusual their "normal"
is. When friends come over, and they have many friends, it is Teresa's
job to keep Alex quiet (his yelling and clicking can get quite loud).
The twins pull toys out of Alex's mouth so he won't choke, avoid
his playful, but potentially dangerous body slams, push him in his
stroller and guard their food against their brother's big appetite
and quick reach. And, of course, they have to do chores -- unlike
Alex, who attends Bridge View, a public school for special-needs
children in St. Paul.
Parents balance grief,
Mostly, though, Abby
and Andy are learning to navigate a world in which they long ago
surpassed the big brother who was supposed to lead the way.
For many parents, this
triggers deep sadness, but also tremendous pride. Many were eager
to talk about their "other" children, although most parents
began with unsolicited mea culpas.
Barb Ziemke, a parent
advocate and trainer at Bloomington-based PACER Center, which offers
resources, support and education to families with special-needs
children, wonders if she expected too much of her daughter, Kristin,
now 20. Kristin grew up in the shadow of younger brother Brandon,
17, who was born with a neurological impairment.
"Looking back, I
think there was more going on than I saw," Ziemke said. "The
initial prognosis was dire. He might not ever walk, talk or hold
up his head. We were so into the process of Brandon that I think
we didn't address what was going on below the surface with Kristin.
The information came out sideways."
Sometimes, that information
had no easy answers. Like Kristin's guilt at being healthy. Or her
resentment at feeling like she always had to be good. Once she asked
her mother, "Can't I be bratty like other kids?"
PACER manager of parent training, remembers children's recitals
she missed because Debbie, the oldest of her four children, was
in the emergency room with seizures. When daughter Sandy, second
in line, grew up, she became her sister's greatest supporter --
but it was not without a price.
"We were so busy
taking care of Deborah's needs that we didn't talk to the others
much about it," Richardson said. "Later on, I began to
say, 'If this is Sandy's day, we'll make other arrangements for
When Abby and Andy turned
13, their parents took them to New York for four days. It was the
first family vacation without Alex.
"It was weird, but
it was better without him," said Andy, who sings in the Minnesota
Boychoir, plays piano and likes doing science experiments. "I've
got to admit that it was easier to move around."
They ate at Tavern on
the Green, saw "Lion King" on Broadway. They rode the
subway. For the children, it was an exhilarating adventure. For
their parents, it was a bittersweet taste of a future in which two
children will fly and another will stay.
The sadness of separation
>From the moment a
child's special needs are diagnosed, many parents begin to do the
math. How old will they and the child be when school-based services
end? How old will the child be when aging parents can no longer
care for him or her? And if they cannot, who will?
"Families have an
obligation to each other," Richardson said. "The message
is, 'Somebody is supposed to do this. We don't abandon members of
our family.' If not [daughter] Sandy," she said with a laugh,
"I'd go down the list until I find somebody."
The twins, on the other
hand, "will never be responsible for Alex's care," Teresa
Guthmann said. John agrees.
"We don't want to
disappear and they have to take over. ... They can be as involved
as they want to be."
Abby, who enjoys art
and tae kwon do, has already thought about it plenty. Like the wise
child she is, she's keeping her options open. "I love Alex,
but I don't see him as a reason to be tied down," she said.
"If I want to leave, I'll leave. If I want to stay, I'll stay."
Andy is already at peace
with his decision. "I just hope Alex has a nice place to stay."
Making a difference
Many sibling have already
created legacies inspired by their childhoods.
Win Bennett, 18, of Long
Lake, left for Brown University in Rhode Island this past September.
But as a freshman in high school, he worried that Mara, the oldest
of the five Bennett children, was spending too many weekends at
Mara was born with Williams
syndrome, a rare genetic condition that causes medical and developmental
problems. Win created Fun Times, a program bringing kids with special
needs and volunteers together about once a month for Twins games,
pumpkin carving, movies, bowling and other activities. The program
is now run through PACER.
Callie Martin, 17, a
junior at South High School in Minneapolis, might have become a
political activist anyway. But growing up as the older sister of
Gabriella Rose, who died in September at age 14 after being born
with lissencephaly (smooth brain), certainly influenced her path.
In November, Callie delivered
an antiwar speech to about 2,000 students gathered at the University
"I really try to
focus on social issues," Callie said. "I've grown up accepting
everybody -- my sister, my parents. I really believe that everybody
should be accepted for who they are."
Most children hear this
lesson often. But young people like Callie and Win and Andy and
Abby live it daily.
Alex "is just happy,"
said Andy. "He doesn't have any worries. Except at mealtime.
It's Sprite. No ice."
What guides us is children's
response, their joy in learning to dance, to sing, to live together.
It should be a guide to the whole world. -Yehudi Menuhin