In everyday lives, this gathering's a big deal

Dwarfism conference joins families for advice, kinship

At the Sayian home in Hingham, (from right) Jessie Adams of Weymouth; Adrienne Sayian; Maddy Garneau of Marshfield. (Globe Staff Photo / Matthew J. Lee)

Three 10-year-old girls are brimming with excitement about the trip they'll make this weekend from their South Shore homes to the Sheraton Braintree Hotel.

Parents don't normally spring for stays at local hotels, but this trip is unusual and, the girls' mothers agree, totally worthwhile.

The girls will be attending a conference of the New England chapter of Little People of America, the national organization for short-statured people. Two hundred people are expected at this weekend's event; about half, including the girls, are little people, or simply LPs, also known as dwarfs.

Such conferences let little people of all ages meet, socialize, and celebrate what they have in common. For average-size parents, the conferences are an opportunity to trade advice regarding the challenges their LP children face.

The trio of 10-year-olds - Adrienne Sayian of Hingham, Jessie Adams of Weymouth, and Maddy Garneau of Marshfield - see the event first and foremost like most pre-teens would: a chance to swim in the hotel pool, dance to songs they've requested of the DJ, and stay up late chatting in their shared room.

Which is perhaps why, when asked whether they like being at a conference with so many little people around, the girls look a little puzzled, as if maybe they'd forgotten the purpose of the event. "Um, yes," Maddy and Jessie said politely. "I met a friend named Eric there," said Adrienne. "Twice. He might be there again."

That response does not surprise their parents, who are probably more concerned about the girls' size than the girls themselves are.

All three girls tend to be assertive and outgoing. They all fare well at school both academically and socially.

Jessie's 12-year-old brother Jason, who is average size, attends the same middle school as his sister, and said he and his friends are on constant alert for anyone who might pick on her. But neither she nor her friends seem to need the protection.

Maybe Adrienne, Jessie, and Maddy can't run as fast as their classmates on the school playground, or they might have to wait for a teacher's help to reach the table in art class. But those minor obstacles are just one aspect of lives that are otherwise pretty much like everybody else's.

"Nobody thinks anything of" Jessie's size, said her father, Bob, describing his daughter's school life. "They've all known her forever."

The outside world is not always so comfortable.

"Jessie's had kids be mean to her at times," said her mother, Katie. "We've had people follow us through a store just to get a good look at her." Many parents say they often end up answering questions from the curious, and are - in most cases - glad to do so.

Little People of America estimates that there are 30,000 people in the United States who were born with dwarfism, most to average-size parents. There are 200 varieties of dwarfism; Jessie and Adrienne have the most common type, while Maddy, who is considerably smaller than her friends, has a form that is extremely rare.

Judging from the way Maddy races up and down Adrienne's stairs, pulls a box of cereal from a kitchen cabinet, and describes her latest Hot Shots soccer tournament, though, it's clear she does not think of herself as disabled or different. Nor do the other girls.

People with dwarfism say they are glad that The Learning Channel's hit reality show, "Little People, Big World," about a family of both average size and dwarf people, has helped people realize that dwarfs are like everybody else, only smaller.

Bob Adams, Jessie's father, notes that the vast majority of little people say they are "perfectly comfortable with their height. They're fine with it," he said, looking at his daughter and her friends fondly. "They're happy."

Supportive school administrators have gladly made accommodations for the girls when needed. The custodian from Jessie's school visited the Adamses' house to see how they'd equipped it, such as turning sinks so that faucets are on the side instead of at the back. "Then he made her a step stool just for her, so she's the same height as everyone else," Katie Adams said. "It was unbelievable."

Gwen Sayian called her school custodian "a genius." She remembered staring at the toilet in the girls' room and asking him, 'Is there any way we can make this thing lower?' He had a better idea - building a plywood platform so the commode became the perfect height. "It was so simple," she said.

Other adjustments in life are relatively minor. For Jessie to play soccer, her parents had to have shin guards custom made. Gwen Sayian recalled the scary realization years ago that Adrienne's life jacket - the tiniest available - "floated her upside-down." But now Adrienne, and her friends, know how to swim.

Parents are accustomed to making accommodations for their LP children, and many say that are happy to put their vacation budget toward conference expenses. Meg Dedman of East Haddam, Conn., who will travel to Braintree this weekend with daughter Abby, age 8, and her husband and son, said her family always has a great time at the conferences. "It sounds corny, but our whole family feels a real sense of community there," she said. "It's like we're all in it together."

The organizer of the conference is Barbara Spiegel of South Portland, Maine, who attended her first Little People of America event when she was 10 years old. "Before that, I grew up thinking I was the only one," said Spiegel.

The New England chapter is "very family-oriented," she said, so many of the weekend's activities will be geared toward children.

For adults, there will presentations by orthopedists and other specialists. But most parents agree that the most valuable information comes from one another.

While the kids are playing, parents swap practical tips, such as having a daughter keep an extra set of textbooks at school so her small frame won't be too stressed by a heavy backpack. Some parents bring tailored clothes their children have outgrown, and pass them along to smaller children.

"The parents who've been there mentor the new parents," says Adrienne's mother.

Katie Adams, mother of Jessie, said that she looks forward to talking to parents of teenagers, so she'll know what to expect in a few years. "I'll be asking about how they handle school, all the practical issues," she said. "Most LP parents are very innovative."

But the kids are too busy having fun at the conference to spend much time on dwarfism issues. Says one parent, "I don't think the LP thing comes up much."

Globe correspondent Kathleen McKenna can be reached at kmck66@comcast.net.