Monday, April 19, 2010

Twins show support when one has a disability

From The News-Journal in Florida:

DAYTONA BEACH, Fla. -- Hugging her sister tightly, Reagan Blanar places her head on Taylor's shoulder and exclaims loudly -- "I love you."

The two follow each other around an Ormond Beach playground. Taylor pushes Reagan on a swing and helps her on a mountain-climbing piece of equipment.

The 12-year-old fraternal twins with brown hair and brown eyes share something in common with another set of 14-year-old twins in Ormond Beach, John and Jesse Hearn.

In each case, one of the siblings has Down syndrome and the other does not.

The siblings have a strong bond similar to other twins. But there's a protective factor in both families by the sibling who doesn't have Down syndrome. The sets of twins, both born at what is now Halifax Health Medical Center, also have a language of their own. Taylor Blanar and Jesse Hearn understand their siblings with Down syndrome more than others.

In both cases, the sibling without Down syndrome has vowed to care for their twin when they're older.

"I don't want her to go into a home," said Taylor, who wants to be a veterinarian one day. "I want to keep her at my house and do everything for her like a real parent would."

Having such twins is "a rare event," national Down syndrome experts say. The odds of having a child with Down syndrome is one out of 733 births. Chances of having twins, in general, is 30 per 1,000 births.

One report shows about 2 percent of pregnancies affected by Down syndrome are twins. Another report by a professor who works with Down Syndrome Education International estimates that out of all births, identical twins with Down syndrome occurs at the rate of 1 or 2 in a million and a fraction of that for fraternal twins. In a group of 1,000 babies with Down syndrome, the report shows about 14 will be a twin or a triplet, with one unaffected.

Down syndrome occurs when an individual has an extra 21st chromosome and it causes delays in development. The older the mother is, the greater the risk of having a child with Down syndrome.

At the Nova ball fields recently in Ormond Beach, John Hearn played with pencils while standing at the entrance to the dugout. He looked out periodically at his brother who was up to bat and then smiled back at his father, Allen, in the stands. He lined up bats and repeated cheers from his father.

While John speaks in short sentences, Jesse, who wants to be a chef when he grows up, is able to decipher that, when his brother says "bread" and "ice cream," he wants McDonalds food. They have a special handshake that involves a high five and knocking elbows, followed by Jesse saying, "You the man," and John repeating it.

"I think I have more than most kids have because John is a lot cooler than having a regular twin brother," Jesse says. "We're best friends."

Taylor Blanar feels the same about her sister, whom she describes as "very social" and "very sweet."

"She's very loveable, and she's fun and she's smart," Taylor said.

Dr. Brian Skotko, a national expert and clinical genetics fellow and physician with Children's Hospital Boston, has studied relationships between siblings where one has Down syndrome. When there is a twin, he said, "the emotions and the relationships felt are intensified.

"You learn every day important life lessons -- how to smile when others are frowning," said Skotko, who has a sister with Down syndrome. "And how to appreciate the small successes that exist in a world that, sometimes, only measures things by large triumphs."

In the Blanar family, where twins go back generations, Theresa Blanar, 54, of Daytona Beach, was 41 when she and her husband, Steve, found out they were pregnant with twins unexpectedly. She already had a 25-year-old daughter at the time. She found out soon after the twins were born that Reagan had Down syndrome and was in denial the first two days. Now, she says, "I couldn't imagine not having her. She is just awesome."

The girls have their own personalities. Reagan is outgoing and "boy-crazy," her mom says. Taylor is the shy one.

Mentally, they're on different levels. Reagan plays with dolls and likes sports while Taylor is trying out makeup and is in the school band. Both attend Hinson Middle School and still swim, paint, build tents at home with blankets and wash dishes together. They share a room, and their mother says they're like other sisters who at times pick on each other.

When Reagan is at a store or special event without her sister, she's sure to pick up a cookie or balloon for her and vice versa.

"My sister is happy to me. I love her," Reagan said.

Only a couple of times, Taylor's heard disparaging comments about her sister.

"If someone says something mean to her, I'd be mad at that person and I'd have a talk with them," Taylor said.

Mostly, she said, her friends "love" her sister.

Jesse is the same way defending his brother, telling people to "cut it out." He tells them his brother is "fun to be around."

"I want (people) to be more educated about what (Down syndrome) is," Jesse said. "A lot of people think you are stupid. It's not true. He is a normal kid who is just a little slow."

Ellie Hearn, 54, who is also a twin, was 39 when she and her husband, Allen, became pregnant with twins. She found out while she was pregnant that one had Down syndrome. While it was emotional, "we have a strong faith. I felt it was meant to be." They also have two older children.

Jesse and John (pictured), who will attend Seabreeze High School next year but were at separate middle schools, "have always had a close bond," their mother said.

"He's never shied away from John in public," their father added. "

Both love baseball and swimming. John sings at church while Jesse is an altar boy.

Jesse, who is in Boy Scouts, helps John's basketball and baseball team for people with special needs while John hangs out with Jesse's Orioles youth-baseball team. John got up a couple of times during a recent game and moved his hips, dancing after the team scored some points.

"He gets up everybody's spirit. He'll yell, 'Come on' or 'Let's go,' " Jesse said while patting his brother's back in the dugout.

"I love you," Jesse said.

"Sure," John responded touching him on the shoulder with a grin.