Twins Veronica and Isabelle Burden look alike, but their adorable looks hardly reflect their different needs since birth.
Tips from a twin who’s been there
Amy and Kelly Liss, 27, were born three months premature.
Complications left Amy a quadriplegic, while Kelly is able-bodied.
But their parents encouraged both respect and individuality, and
Amy passes on some tips to parents in their situation.
Q: Should parents of twins with different needs cater
more to the non-special needs child?
A: “No, I think parents should treat their kids
the same. Even if a child has special needs, the parents should
still have realistic expectations for what they achieve. I also
think it’s important for parents to treat their special needs child
at their age-appropriate level.”
Q: What should parents tell their special-needs child
regarding the health or normalcy of the other twin?
A: “You should tell the special needs child
that people are born with different abilities. It just so happens
that they have special needs but it doesn’t make them any less
valuable to their family or the world around them.”
The 5-year-old girls were delivered five weeks early by emergency C-section after complications developed for Veronica. But Isabelle emerged into this world unscathed. Since then, their lives have been as different as twins can be.
Liz DeCarlo/Chicago Parent
Veronica, left, was born with spina bifida. Her twin, Isabelle, is healthy.
Lorenza Foster is a little teacher to her twin sister Mia, who has Down syndrome.
Isabelle is a healthy girl whose only special need is yearning to still be carried around by her parents when she can get away with it.
Veronica, however, was born with myelomeningocele, a type of spina bifida where the back spinal canal does not close before birth.
At just 2 days old, she had her back surgically closed. At 9 days old, a shunt was implanted. Another surgery corrected a serious eye problem. And chronic bladder issues prompted several more surgeries, as well as ongoing complications that include the need to be catheterized five times a day.
“Yes, Veronica has certainly had a more challenging life,” admits her mom, Nancy Burden, of Palos Park.
Veronica’s most recent eight-hour surgery took place May 21 to reconstruct her bladder and bowel, and she will face more scalpels and stitches in her future. Yet even though she uses crutches and a walker to get around, she’s the twin who longs to walk on her own, not Isabelle.
“Veronica is more outgoing and more determined,” her mother says.
This seems to be a common theme with twins and triplets who share similar looks but different fates in life, experts say. Another telling aspect of such siblings is a healthy, yet sometimes jealous, rivalry between the healthy sibling and the sibling with special needs.
“There is some jealousy between my girls,” Nancy says.
And this jealousy goes both ways. Just as Veronica may be jealous of Isabelle’s good health, Isabelle may be jealous of all the attention heaped on Veronica since birth-doctor visits, routine surprises and myriad gifts from family and friends, for example.
Still, a more uplifting aspect of being twins in such a situation is that the sibling with special needs is often inspired, if not provoked, by the healthy sibling.
“Having Isabelle as a twin sister has really helped Veronica’s development,” Nancy says. “I don’t know where she would be without her sister.”
It’s Isabelle who prompts Veronica to walk independently. It’s Isabelle who urges Veronica to play outside. And it’s Isabelle who spurs Veronica to be just like other kids their age.
"She sees what Isabelle can do and she wants to do it too," Nancy explains. Not a rare situation
Kim Foster experiences a similar situation with her 3-year-old twin girls, Lorenza, who is healthy, and Mia, who was born with Down syndrome.
“It’s like Lorenza is a little teacher to Mia on a daily basis,” says Foster, a school psychologist from Brookfield. “She helps her with walking, talking and even playing.”
Miranda Coleman’s 12-year-old twin sons are identical in appearance, but not in health or their daily needs. Thomas was born with congenital heart problems while Sidney had no complications during their premature births.
“But the odd thing is that Sidney has always been Thomas’ big brother, of sorts, even though Thomas came into this world a few minutes earlier,” says Coleman, of Chicago.
Thomas’ life has been more challenging and his “little brother” has always sensed that somehow, their mother says.
“It’s like Sidney was sent into this world to protect and help Thomas,” she says. “Although he knows that Thomas has special needs, he also knows that he and Thomas are kindred spirits-an all-for-one and one-for-all attitude.”
Amy and Kelly Liss share in this phenomenon.
The women, now 27, were born three months premature, with Kelly suffering two collapsed lungs and other health problems during delivery. But she recovered and is able-bodied today.
The difficult birth left Amy with spastic quadriplegic cerebral palsy due to lack of oxygen. She is in a wheelchair and unable to stand, walk, crawl or feed herself independently.
However, literally from day one their parents planted the seed of mutual respect for one another, they say.
“They encouraged each of us to do our best with the abilities we have,” says Kelly, who lives in Chicago.
“My parents did a great job of including me in all family activities,” says Amy, who lives in Downers Grove. “They always encourage me to do my best and be as independent as possible. They are realistic of what I can and can’t do.”
Still, even in the best of circumstances, the issues can be hard.
“Families with twins or more who have a child with special needs are wise to be aware of balancing their time, attention and energies fairly between each of their kids,” says Dr. Shelly Vaziri Flais, author of Raising Twins, From Pregnancy to Preschool-Advice from a Pediatrician Mom of Twins. “At the same time, parents should have a realistic outlook and know that there will be periods of time (weeks or even months) where one child takes the ‘front seat’; try not to feel guilty about this, but remember that you’re doing the best you can, and that each of your children, over the long haul, will take center stage at various points.”
Flais also advises parents to keep their expectations of the healthier twin in check. “…Know that your other children will have mood swings and bad days (as frustrating as that may be, given all your other responsibilities). Communicate with your kids about it, let your kids know that it is OK to be human and have such feelings, and work together to develop coping strategies to move forward.”
Jerry Davich is a dad of two and freelance writer.
See more of Jerry’s stories here.