Cape Cod Kidz

Meet Brendan Pawlina, mayor of Chatham Elementary School

Rare genetic disorder doesn't inhibit outgoing boy

Chatham Police Chief Mark Pawlina, left, visits his son Brendan at Chatham Elementary School.

Survives early brush with death, grows more independent

By James Kinsella

You can see it in any successful mayor: that easy manner, that infectious humor, that unerring grasp of their constituents' names, that presence that immediately draws the eye of anyone in the room.

Brendan Pawlina had to battle for his life. In his first year, there was a question whether he would live.

So, too, can you see it in Brendan Pawlina, the unofficial if widely acknowledged mayor of Chatham Elementary School.

Walking down the corridors of the school, the second-grade student greets teachers and students alike with a friendly, ingratiating manner.

Asked by a teaching assistant Melissa O'Leary why a journalist has come to visit him, Brendan replies, "I'm going to be a star!"

"Is that why you look so dapper?" O'Leary asks.

"Yes," he replies, not missing a beat.

But just as any mayor has faced battles to get to their position, so too has Brendan.

Brendan, in fact, had to battle for his life. In his first year, there was a question whether he would live.

Brendan, 8, has what is known as Costello syndrome, an extremely rare genetic disorder. His father, Chatham Police Chief Mark Pawlina, said about only 200 people in the world have the syndrome.

Mutations in the HRAS gene cause Costello syndrome. According to Wikipedia, the gene provides instructions for making a protein that helps control cell growth and division.

Gene mutation creates permanently active protein

The mutations, Wikipedia reports, lead to the production of an HRAS protein that is permanently active," Wikipedia reports. "Instead of triggering cell growth in response to particular signals from outside the cell, the overactive protein directs cells to grow and divide constantly. This unchecked cell division may predispose to the development of benign and malignant tumors."

Common features of Costello syndrome include delayed development, distinctive facial features, heart problems and unusually flexible joints.

Another aspect of the syndrome: people with it tend to be very engaging and sociable.

Mark Pawlina said Brendan has had numerous surgeries. At first, Brendan couldn't eat, and had to fed through a tube.

Brendan spent the first 22 weeks of his life in the neonatal intensive care unit at the Connecticut Children's Medical Center in Hartford, Conn., the area where the Pawlinas were living at the time.

Mark and his wife, Pamela, first were aware that Brendan was facing issues when he was in the womb.

"No one could tell us what was up," Mark said. "He had a lot of fluid. He had enlarged kidneys. When he was born, he was filled with fluid."

Brendan spent the first 22 weeks of his life in the neonatal intensive care unit at the Connecticut Children's Medical Center in Hartford, Conn., the area where the Pawlinas were living at the time.

"The first year of his life, we really didn't expect him to live," Mark said.

Even if Brendan lived, there was a question whether he ever would walk.

As he progressed very slowly, he finally was diagnosed with Costello syndrome, which only has been identified in the last 30 years.

Brendan, however, kept going. Mark gives a lot of credit to his teachers for his son's development.

For a long time, Brendan only ate soft food such as yogurt. Then one day, at a community dinner, Brendan's pre-school teacher showed his parents that he could and would eat spaghetti. He now often eats in the cafeteria with the rest of his students.

Walking independently

When he first got to Chatham Elementary School, he would walk with a walker. Now he walks independently.

Brendan spends most of his school day with his fellow students in Ann Barnard's second-grade class, going to another room for special instruction.

He spends his time in school, he said, "working." At present, that includes writing his name, and recognizing numbers, colors and shapes.

Brendan likes dinosaurs ("they scare") and "High School Musical," to which he knows all the songs. He likes books about Arthur the Aardvark and Curious George, and computer programs such as "PBS Kids" and "Caillou."

Brendan plays volleyball in gym with Melissa O'Leary, his one-on-one teaching assistant. Summarizing, Brendan said, "I get the ball over the net, and she wins."

He also plays volleyball in gym with O'Leary, his one-on-one teaching assistant. Summarizing, Brendan said, "I get the ball over the net, and she wins."

"He's a lot of fun to work with," O'Leary said. "He has an amazing sense of humor. He's a generous kid. He's sincere. He's nice to his friends."

As befitting a mayor, Brendan also takes a wider view.

"He knows every teacher's job," O'Leary said. "He tells us what's going on. We don't have hall monitors at Chatham Elementary School, but he likes to say he's the hall monitor.

"He's just a really sweet kid," she said. "He does make our day fun."

Providing a balance for Brendan

Mia Caolo, the special education teacher who works with Brendan, said the school seeks to provide a balance for the boy, keeping him for the most part with his second-grade class where he works on skills such as listening and raising his hand, while getting individual instruction part of the day.

Placing him with his fellow classmates from kindergarten on, Caolo said, has provided Brendan with easy acceptance.

"The kids love him," she said. "They get it. They've always gotten it."

As for his developmental goals, Caolo said, "Independence is our main focus."

Back at the classroom, Brendan introduces a few of his friends: "This is Xavier, this is Destiny, Kelly, Eddie..."

A pleasure to have in class

"He's just a pleasure to have in class," said his teacher, Ann Barnard. She mentions, as others do, his sense of humor.

Despite his special needs, Barnard said, he's treated like everyone else in the class, with expectations and consequences based on what he does and how he acts.

"He's caring, he's interested, he's happy," she said. "Everyone just loves him."

Mark Pawlina said Brendan fits in well with his siblings: his brothers Jacob, 12, and Mark, 7, and his sister Madison, 10.

The boy's also a devoted fan of the family's Siberian husky, which he describes as "big, big, big, big!"

Speaking of Brendan, Mark said, "He's taught us so much about life and how we look at our lives."

Given the microscopic chance of having a child with Costello syndrome, Mark said, he and his wife would have had a better chance of hitting the lottery.

But when it comes to Brendan, Mark said, as far as they're concerned, "We've hit the lottery."

 Brendan with his teaching assistant, Melissa O'Leary.

Special education teacher Mia Caolo with Brendan.

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Kyle Burns enjoys life as 'Big Man On Campus'

Overcomes autism to attend program at Cape Cod Community College

 Kyle Burns of Plymouth has enrolled in Project Forward at Cape Cod Community College in West Barnstable, where he has been selected as a peer leader.

Student shows flair for short-story writing

By James Kinsella

Mary Gray's voice leaps up when she hears the name.

"Kyle Burns!" she exclaims. "I can't say enough about him."

Gray taught English and cooking to Burns when he attended the League School of Greater Boston in Walpole.

In May, Burns, who has autism, graduated from the school. He has moved on to Cape Cod Community College, where he is completing his first semester in Project Forward, a vocational training program at the college.

Burns, 22, who lives in Plymouth, commutes three days a week to the community college in West Barnstable, a trip that in the morning involves a tag team of several buses.

The young man was happy to start his studies at the college.

"It felt great," Burns said. "I always like to use the expression, 'Big Man On Campus.'

"Everybody seems very nice here," he said. "I kind of gained a little more independence here."
Kyle's father, Ed Burns, said going to the community college has been a good experience for his son.

"Kyle reads very well," Ed Burns said. "He's interested in world geography and world religions and world cultures. He's getting a flair for writing short stories."

Peter Daley, director of Project Forward, said Burns has been selected as a "peer leader," a program participant who shows leadership skills. As a peer leader, Burns will be among those students who show other prospective students around the campus and help answer their questions.

"He seems like a very motivated young man," said Daley, who's worked in the program for 14 years and directed it for six. "He's interested in learning. He's interested in work."

The program offers training in office technology, maintenance and home repair, child and animal care, and culinary arts. A total of 135 students are enrolled in the Project Forward program.

Next semester, in addition to his Project Forward work, Burns plans to take a mainstream writing course at the college.

He already has been composing adaptations of fairy tales and famous stories, bringing them into a modern context.They include "Emily of Oz," a retelling of the Wizard of Oz; "A Jock, a Nerd and a Beanstalk," where a science project involving RNA yields unexpected results; and "A Modern Christmas Carol," whose characters include a homeless man.

He's also written a parody of the Beatles called "The Needles Anthology."

"They didn't make it as big as the Beatles did," Burns said.

Chapters include "The Peter Graves Jugband Society"; "The Cave"; "Needlemania Reaches the North"; and "The 'Forget About It' Project."

Burns may have been born years after the breakup of his Beatles, but he knows his source material, engaging in a discussion of which songs are included on the CD, "The Beatles/1967-70."

His father, Ed Burns, said he became aware when Kyle was a young infant that his son was progressing more slowly than other infants his age.

"We didn't know what it was," Ed Burns said.

Kyle eventually was diagnosed as autistic, which Ed Burns said is a neurological condition that, among other things, greatly affects an individual's ability to talk.

Ed Burns said his son took a long time to learn how to speak. He found his son also would be bothered by certain sounds, such as that coming from a neon light, or by seeing a fire alarm box on the wall, fearing the loud noise that would come when the lever was pulled down.

Kyle, however, attended regular public school as a child. By the time he became an adolescent, however, his parents began pushing for special placement.

That's when he began attending the League School. (His graduation picture is shown above.)

Both Kyle's father and teacher Mary Gray said Kyle was very quiet and introverted when he began attending the school.

But his education there, Ed Burns said, made Kyle "outgoing, sociable, confident."

"It was a beautiful experience," Ed Burns said.

Gray said Kyle "was a great addition to the classroom."

When the class was discussing a story set earlier in history, Gray said, Kyle periodically raise his hand and ask for a "costume check" - a description of the clothes that the people were wearing. He wanted to visualize what they looked like.

"That's how deep he runs," Gray said.

Most people know Gray as "Mimi," but Kyle explained to her that he couldn't call her that.

"I'm not going to call you 'Mimi,'" Kyle told her. "If someone thought to name you after the Blessed Virgin Mary, I could never change that name."

Gray said Kyle brought some strong suits to the table, including a wonderful family who went the extra mile in getting Kyle to push his boundaries.

"I'm so glad he's having the chance to go on after the League School," she said.

Kyle said he did feel very sad graduating from the League School, knowing that, "some of the kids I would never see again."

Now that he's at Cape Cod Community College, he's holding off on choosing a particular career path.

"I haven't thought of it yet," Kyle said. "That's the problem: some people just race through it. It just happens."

He's certain of one thing: "I'm going to meet somebody here, somebody I can have a relationship with."

Ed Burns is proud of what his son has done and of the potential he's shown.

"Here's a young man who has a significant disability," said Kyle's father, Ed Burns. "He's putting a lot of effort into learning how to adapt in our world. He's risen to the challenge."

 Burns has been writing modern adaptations of well-known stories, including "Emily of Oz," drawn from L. Frank Baum's "The Wizard of Oz."

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Truro kids design their town playground

Truro kids design their town playground
Community volunteers will build new play center later this month

   How one Truro child envisioned the proposed playground.

By James Kinsella

Say you're a kid growing up in Truro, and an adult comes to you and says that you get to design a playground for the town.

First off, you're probably going to want some basic playground stuff, like swings and slides and ladders.

Then, because this is a Truro playground, you're going to want to include something from the town, like Highland Light.

And then, because this playground should be REALLY COOL, it should have something really cool - like a shark eating a boat.

Come the end of October, that's exactly the kind of playground the children of Truro will have.

In what is described as a five-day blitz, from Wednesday, Oct. 22 through Sunday, Oct. 26, volunteers are scheduled to build Puma Park, a community playground, next to the new Truro Community Center on Library Lane.

See our new website for Parents and Kids.

Using donated materials, the volunteers will put together a playground created from the ideas of the children of Truro.

The playground, which will cover 7,500 square feet, is being built on town land near Library Lane off Standish Way, between the town library and the new community center, which is slated for completion in November. Organizers estimate the project will cost about $120,000.

The name and logo of the playground is a reference to the legendary Pamet Puma, a big cat long rumored to wander the wilds of Truro. The puma's image will be incorporated into a rock-climbing wall at the playground. Truro schoolchildren chose the name for the park (which also is the name of the school mascot) by majority vote.

Co-organizer Rebecca Townsend said the effort to build the playground started close to three years ago.

"Truro lacked a community playground," Townsend said. "We're the only town on the Cape not to have one. We researched it."

She brought the need for the playground up at a "meet and greet" event held by Curtis Hartman, who was running for a selectman's seat at the time. Hartman asked her help in making it happen. He was elected to the board; he and Townsend became co-organizers of the playground project.

Further research revealed that playground construction is expensive, so the organizers decided to involve the community in donating materials and building the playground.

To make the child-designed playground a reality, organizers turned to people who have done a lot of this sort of thing, Leathers & Associates of Ithaca, N.Y.

Back in March, a designer at the firm, John Drew, came east to meet with the students of Truro Elementary School.

Drew met and spoke with every child. In turn, the children gave him their individual drawings of an ideal playground.

By that evening, he had drawn up a schematic and presented it at a community meeting.

In early September, another Leathers designer, Dave Iannello, came to Truro to meet with the various playground committees working on different aspects of the project.

Iannello has worked on many community playgrounds across the United States. Treehouses and castles, he said, are recurring motifs.

"There are a lot of spins on monsters," Iannello said.

And like the Truro children with their lighthouse and voracious shark, children in other communities include local themes. One rural playground has a giant, mechanical farmer robot with a hollow center through which the children can climb. An Alaskan playground has three-dimensional dogsled teams.

Although the materials to build the playground already have been purchased, organizers continue to welcome offers of volunteer help during the construction and donations of money to help pay for the materials and to establish a program to maintain the playground.

Townsend is excited about the playground's promise.

"It's going to be a great little spot," she said. "The outpouring of community spirit is unreal."

Truro is by far the smallest town on the Cape, with a year-round population of about 2,000. Yet Townsend said many people in town still don't know each other.

And that's another reason to build the playground: to provide a center for the community.
"We're trying not only to build a playground, but to build a community as well," she said.

Although the materials to build the playground already have been purchased, organizers continue to welcome offers of volunteer help during the construction and donations of money to help pay for the materials and to establish a program to maintain the playground.

Click on the image below for a larger version of the construction diagram.

More information about the playground is available by calling Townsend at 508-349-0442, e-mailing her at rebecca@truroplayground.com,or visiting the Web site at truroplayground.com.

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Attention junior explorers and future rangers!

Cape Cod National Seashore offers fall Junior Explorer programs for kids ages 8-13

The Cape Cod National Seashore is offering an exciting schedule of nature programs for children ages 8 to 13.  This is the perfect Saturday activity for future rangers in training.  Kids will learn to develop skills for the Cape Cod wilds!

There are two separate programs running simultaneously, an Eastham/Wellfleet program from September 6 through October 11 and a Truro/Provincetown program from September 6 through September 27. All programs run for one hour on Saturday and all are free! 

Parents must remain with their children and registration is required. See details and a program listing below:

EASTHAM/WELLFLEET PROGRAM
Saturdays at 10am, September 6 through October 11, 2008
Call the Salt Pond Visitor Center at 508-255-3421 for meeting locations and to register

September 6 - Nature Journal - In nature, things are happening all around you.
Create a journal and then go outside to discover and record what may be under your
very nose.

September 13 - Nature’s Grocery - Did you know the outdoors is a grocery store?
Learn what plants have been “good eats” for people for hundreds of years - and can
still make it to your plate today!

September 20 - Outstanding Owls - Are they wise? How do they fly silently? Find out
the answers to these questions and also dissect the “leftovers” of an owl’s meal, to find
out what they eat. (handicapped-accessible)

September 27 - A Child’s Life - Life in the 1800’s was a lot of work, but kids still
managed to have fun. Learn about some of the jobs and play some games that children
enjoyed in the past.

October 4 - Green Crab Invasion! - Learn about how these “wash-a-shores” have
changed the marshes of Cape Cod. This is a wading program, so be prepared to get
your feet wet!

October 11 - Nature Journal - In nature, things are happening all around you. Create
a journal and then go outside to discover and record what may be under your very nose. (handicapped-accessible)

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TRURO/PROVINCETOWN PROGRAM
Saturdays at 2pm, September 6 through September 27, 2008
Call the Province Lands Visitor Center at 508-487-1256 for meeting locations and to register

September 6 - Outstanding Owls - Are they wise? How do they fly silently? Find out
the answers to these questions and also dissect the “leftovers” of an owl’s meal, to find
out what they eat. (handicapped-accessible)

September 13 - Junior Lifesavers - Explore the world of Cape Cod’s shoreline heroes
through games and activities. Bring home some maritime skills to the 21st century.

September 20 - Nature Journal - In nature, things are happening all around you.
Create a journal and then go outside to discover and record what may be under your
very nose. (handicapped-accessible)

September 27 - Nature’s Grocery - Did you know the outdoors is a grocery store?
Learn what plants have been “good eats” for people for hundreds of years - and still
can make it to your plate today!

Ranger-led programs can be great fun for you and your kids, but sometimes nothing beats exploring on your own!  Visit the Cape Cod National Seashore's website to plan a day of hiking and exploring with the kids. 

The Salt Pond Visitor Center is open 9am-5pm daily and the Province Lands Visitor Center is open daily, 9am-5pm through October 31st.  Trail maps and other information is available at both centers and also online in PDF form. 

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Another great way to avoid the August kid doldrums

Summer Science School: another great way to avoid the August kid doldrums

Waquoit Bay National Estuarine Research Reserve is featuring some very interesting topics during their Summer Science School in August.

Estuary Adventures - For kids entering grades 4, 5 & 6
Time/Dates: 8:45am-12pm noon, August 11-15, 2008
Cost: $100

Young scientists use a variety of equipment, from crab traps to salinity meters to sample the marshes, creeks and bay, discovering an ocean of adventure along the way.

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Power Rangers - For kids entering grades 4, 5 & 6    
Time/Dates: 8:45am-12pm noon, August 4-8, 2008   
Cost: $100

Children participate in activities that encourage team work and problem solving while exploring renewable energy concepts. Design and test wind and solar powered devices and use scientific equipment to discover how climate change could affect the creatures that live in the bay.

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Women in Science - Girls entering grades 7, 8 & 9
Girls only session includes an overnight on Washburn Island
Time/Dates: 8:45am-2pm, Mon-Wed, overnight Thurs 1pm-12pm noon Friday, July 28-August 1, 2008

Young women receive inspiration and support from WBNERR staff while building confidence through activities relating to scientific research, marine biology, and ecology. An overnight camping trip fosters peer relationships as girls leave cell phones behind and face the challenges of setting up shelter, cooking and exploring the island at night.

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Space is limited - only one session per child please.  Full or partial scholarships may be available.  For information call 508-457-0495 ext.108.

Check out their site here and get the kids signed up by downloading a registration form here.

Also: Don't miss the Watershed Block Party, Tuesday, August 5 from 3pm-6:30pm.  One of the highlights of the year with activities for the whole family!

The Waquoit Bay National Estuarine Research Reserve is located at 149 Waquoit Highway in Waquoit, MA. 508-457-0495.  Learn more about the reserve here.

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