Glee is raising awareness!

One of my all-time favorite shows is at it again.  Glee is raising awareness and offering opportunities to all learn that words can hurt.  I love the fact that this wonderful show broaches those difficult topics and celebrates our differences and abilities!

Glee Season 4: What Everyone Can Learn From Finn’s Mean Comments About Sue’s Baby — Exclusive

Photo Credit:

After her introduction to the world duringGlee’s Season 4 premiere, Sue Sylvester’s (Jane Lynch) infant daughter, Robin, hasn’t gotten much screentime. Then, during November 8’sSeason 4, Episode 5: “The Role You Were Born to Play,” one comment from Finn(Cory Monteith) suddenly brought little Robin back into the forefront of everyone’s minds.

During the episode, Finn and Sue got into a heated argument after Sue told Finn that he shouldn’t cast a gay male student as a female in the school play. Burning with anger, Finn told Sue that he thought she should be more sympathetic, considering that her own daughter has Down Syndrome. However, his particular “r” word choice to describe baby Robin wasn’t so nice.

Finn immediately apologized to Sue for his choice of words, but the damage had been done. Sue went on the warpath, and it seems pretty unlikely that she’ll be forgiving Finn anytime soon.

Wetpaint Entertainment spoke exclusively with Diane Grover of theInternational Down Syndrome Coalition for her thoughts on the emotional Glee scene. How did she react to Finn’s outburst — and what does she hope people will learn from the incident?

Photo Credit: Danielle Levitt/FOX ©2011 Fox Broadcasting Co.

What would your response to Finn’s word choice be?
When people use this word, whatever emotions they are feeling, it is always a good time to educate them about the word, and how we feel when they use it. In this case, I might have just given him a look of concern, because he seemed to check himself right away. Which is all we can ask for from anyone. People use words they don't mean, and it is nice when someone quickly recognizes that this might be hurtful and lets you know they are sorry, as [he] did.

What do you hope that Glee viewers can learn from the exchange?
I hope that viewers learn that we in the disabilities community understand that not everyone has ill intentions when they use the word. Sometimes it does slip. But it is a good opportunity for people to learn that even if it does slip, a simple I am sorry, goes miles. Nobody is expecting anyone to be perfect. Just respectful of others feelings.

Why is it important for Glee to be including a storyline like this on the show?
Everyone can learn from this story line. This word will continue to be used inappropriately for as long as people do not have this conversation. This story line, opens the door to conversation.

Be gentle.

Rocking his extra chromosome, Eagle Scout style

I love stories of success.  Especially when those successful people rock their extra chromosome like Adam.  Read on about this inspiring young man and the people that support him.

Determination leads Frankfort teen to Eagle Scout rank

By Ginger Brashinger Correspondent November 9, 2012 5:46PM

Adam Sekula loves to play his guitar and his drums and listen to the Beatles — John Lennon is his favorite, and he loves his dog, Maxine.

The 16-year-old is not so fond of doing chores around the house or tackling his homework.

His mom, Marlene Sekula, said he tells her she’s “tough,” but said Adam doesn’t put up too much of a fuss.

What sets Adam apart from other teens his age are his accomplishments as a Boy Scout.

The Lincoln-Way East High School sophomore recently earned the rank of Eagle Scout, earning 63 merit badges, proudly displayed on a sash across his chest.

A 64th badge is in the works.

“He’s earned the most merit badges of anyone in his troop, past or present,” Marlene Sekula said.

An impressive record for any Scout, anywhere — only 4 percent of Scouts ever reach the Eagle Scout rank, Marlene Sekula said — but Adam’s accomplishments might be considered more impressive because Adam is an Eagle Scout with Down syndrome.

“He knows he has Down syndrome, and he understands he’s different,” Marlene Sekula said of her only child. But she said that has never stopped her son from accomplishing what he has set out to do.

“My expectations of him aren’t any different than I’d have of any other child,” she said.

Marlene Sekula said those expectations are true in Scouting, too. She said the only special consideration Adam has received as a Scout was when he was allowed to use a paddleboard for a 100-lap swimming requirement in order to advance in rank.

Adam not only accomplished his goal, but within months was able to do 100 laps without the board.

He doesn’t take the easy path.

Adam has set himself apart in Scouting from his early years as a Tiger Cub with Cub Scout Pack 101 in Frankfort Square. When he “crossed over” to Boy Scout Troop 237 as a fifth-grader, he was named Pack 101’s “Outstanding Cub Scout of the Year.”

“I didn’t tell him he had to” join Boy Scouts, Marlene Sekula said.

She knew there would be some real differences between the parent-run Cub Scouts and the more rigorous requirements of the Boy Scout troop, but “I had to give him some choices,” she said.

“There was no question on Adam’s part. I thought he wouldn’t stick with it, but he loved it. Every Monday night, he’s dressed and ready to go,” she said.

When the opportunity came for Adam to earn the rank of Eagle Scout, there was, again, no question in his mind. He was going for it.

Bob Cupp, Adam’s Eagle Scout project coach, said Adam is “very task-oriented.”

“He wants to see the job through and make sure it’s done right,” Cupp said. “Adam has learned to roll with different levels of difficulty put in front of him. He knows when to look for help, either to get an answer to a question or to point him in the right direction.”

Cupp said Adam doesn’t ask anyone to do it for him.

Adam said the idea for his Eagle Scout project came about when he asked Harold Osterreich, an elder of his church, Immanuel Lutheran in Mokena, if there were any projects he could take on.

Osterreich told Adam the church could use a paved area around an outdoor altar, a place where people could stand comfortably during religious ceremonies.

Adam ran with the idea, working with Cupp to raise money, plan and complete the project, directing 44 Scouts, friends and family in a 225-man-hour project.

Cupp said when it came time to do the project, Adam “oversaw, ordered and found the kids to do each job.”

“Sometimes he got caught up in the project,” Cupp said. “But he did a great job of keeping everybody going.”

Adam’s drive to do his best has been apparent all through Scouting, from his active participation in service projects to taking on leadership roles.

His talents and determination are apparent in other areas of his life, as well. He has earned Special Olympics medals in golf, volleyball, basketball and other sports through the Lincolnway Special Recreation Association, and he is part of the Best Buddies program at Lincoln-Way East.

Still, scouting is Adam’s “passion,” Marlene Sekula said.

He plans to stick with his passion, eventually working up from his rank as junior assistant Scoutmaster.

“He’s very determined. I used to call it stubbornness, but it’s a determination,” Marlene Sekula said. “He wants to get it done.”

Be gentle.

Raising Awareness in far away lands

I know we are raising awareness in my local community.  But how is awareness raised in communities in far, far away.  Down Syndrome does not discriminate.  All communities need help raising awareness.

Here is what one community in Namibia is doing to raise awareness about Down Syndrome.  Amazing read.

Namibia: New Group Raises Awareness of Down Syndrome

It is estimated that one out of every 650 babies born in this part of the world has the extra chromosome which causes Down syndrome (DS). That one extra chromosome is the cause of much havoc in the person’s body, from serious medical problems to a whole range of developmental challenges.

“Unfortunately society does not see the person, they see DS. They see a person who looks different, speaks perhaps not so clearly or not at all, a person with less social filters who expresses him or herself emotionally more freely. They see the Down syndrome and not the person, although people with DS are people just like you and me,” says Eline van der Linden, a founding member of the association and mother of five-year-old Namashiku, who has DS.

If one in 650 children born in Namibia has DS, there should be about 3 400 people with DS in the country. But with the current lack of information, advocacy and medical care, only 35 percent of these children will live beyond the age of two. Considering these statistics there are currently about 1 000 people with DS in Namibia.

“There is so much opportunity in Namibia to make a difference for people with DS and to create openness in society about DS,” van der Linden says.

The Down Syndrome Association of Namibia hopes to help create that openness in society.

“In Namibia we can jump the learning curve, finding applications that work for us, drawing from achievements of Down syndrome associations the world over and Down Syndrome International, which brings us all under one umbrella,” she says.

They aim to get to a point where a person with DS can say: “Down Syndrome, yes I have that, but it did not stop me from living my life to the best of my ability. I was looked after by health professionals who knew what to do with me. I was welcomed by my local kindergarten and also at our local school. I learned how to read and write and many other important things. I have friends and family who care about me. It is not about what I cannot do, but what I can do.”

The association will reach out to the government, private sector and the public to change perceptions about people with Down syndrome. They will facilitate opportunities for self-advocacy by people with DS.

They will also facilitate parent-to-parent or caretaker support. They will grow the support network, helping each other by sharing experiences, contacts of service providers and emotional support.

The Association will continue to have dialogue with education professionals, institutions and the government on inclusive and integrated education models. They will also organise fun social activities for people with DS and their families, caretakers and friends.

Be gentle.

Motor skills can improve with karate

Davey is wanting to take karate lessons.  He took Tai Chi when he was seven and really had a lot of fun.  I found this article this morning.  Here is an awesome example of kids with developmental delays improving their motor skills through martial arts.

Staten Island kids sharpen motor skills with karate lessons

Karate grandmaster Paul Mormando, center, leads students David, Antonio, Jason and Joseph in a kicking exercise during a class tailored to their special needs at S.T.A.R.S (Specialized Therapeutic and Recreational Services)

STATEN ISLAND, N.Y. -- When one of her young patients who was taking karate lessons in pre-school showed marked improvement in her balance and motor skills, physical therapist Maria Sarabok decided to investigate.

At S.T.A.R.S. (Specialized Therapeutic and Recreational Services), her pediatric Eltingville practice, Ms. Sarabok specializes in early intervention for motor delays. With a doctorate in physical therapy from New York University, she has taken a unique approach by providing not only private therapy sessions but small group motor classes.

“For kids who are behind their age group in motor skills, a gymboree class for typical kids does not work. I wanted to create something where they can feel successful and have fun,” said Ms. Sarabok.

The motor classes also add a social aspect to the children’s lives and just as importantly, provide a place for the parents to relax and network.

When she contacted her patient’s karate teacher Paul Mormando, she found a kindred spirit. A grandmaster, 10th degree blackbelt, Mormando had created his own system of martial arts when he was 19 years old. In addition to pursuing his career, he is dedicated to teaching children and adults because of the difference it can make.

“A lot of attributes from martial arts transcends to everyday life — focus, eye-hand coordination, balance as well as camaraderie and discipline,” said Mormando.

They decided to combine their expertise to develop lessons for children with disabilities such as cerebral palsy, Down syndrome, motor impairments associated with the autism spectrum, and other diagnoses.

The classes are for “any child with motor issues,” although in the three inaugural classes, the children are for the most part on the autism spectrum or being evaluated.

Assistant Anna Mormando guides Joseph in a punching drill with karate grandmaster Paul Mormando.Staten Island Advance/Derek Alvez

For these children, explains Ms. Sarabok, motor skills are delayed or not age appropriate. Actions such as hopping, tumbling, jumping and playing ball, skills a typical child their age takes for granted, require an extra effort and focus.

“It can become a circular problem. If they are not participating in age related activities such as baseball, soccer or karate, they are not going to evolve in those skills, and they are missing out on social activities. The differences are subtle, but they become not so subtle for the child as they get older which creates other issues, including not wanting to participate,” said Ms. Sarabok.

Jennifer Azarow, mother of 3-year-old A.J., is convinced.

“I thought it was a really good idea. I wanted him to be able to be part of regular activities that children his age participate in. This was an opportunity to do karate in an environment that is appropriate for kids on the [autism] spectrum,” said the Eltingville mother.

Everyone looks sharp and eager in the 2 ½- to 3½ -year-old class in their black T-shirts, black pants and white belt. Class begins with a line up on the shiny yellow line and a bow. But as with everything, unison is not required; the lessons keep moving forward.

Physical therapist Maria Sarabok coaches Matteo as he prepares to jump over the wand held by Mormando. (Staten Island Advance/Kathryn Carse) 

Mormando puts them through routines, jabbing in the air, ducking under a wand, then everyone takes a turn first punching then kicking an orange balloon that he floats above them.

After class, Jake Gordon, hops into his father Gabe’s arms. He looks like he will be asleep before he leaves.

“It helps with listening and following directions, providing structure for a 2 1/2 year old,” said the Eltingville dad.

“He’s our only — so he’s not around other kids a lot. This is a good opportunity,” said Jake’s mom Katie.

In the lounge, fitted out with comfortable chairs and couches, Ms. Sarabok’s husband Todd Hack welcomes the parents with coffee and bakery treats during the Saturday morning sessions. Providing them with a place to meet and talk is an added benefit says Ms. Sarabok.

“For children under 3, the services are in the home. It is the most isolating time and it is the scariest time for the parents,” said Ms. Sarabok. “It’s been a pleasure to see them in the waiting room talking to someone who is going through the same thing.”

“This is unique on the Island,” said Meredith Bova, an early intervention therapist. She both shadows a student in the first class and brings her son Christian to the lessons in the 3 1/2 to 5 1/2 year old classes.

The classes filled (with a cap of six participants) without any advertising, mainly because of the need for such classes and the network among parents to circulate news that includes Facebook pages (Staten Island Parents of Special Needs Children and Jillian’s Special Needs Family).

Christine New knows that her daughter Haley, 4, would not be able to focus in a room with all the glass and mirrors of most martial arts studios, but she wanted her to participate in the activity.

“She’s in therapy all the time. I wanted her to have something fun that I don’t have to worry about. The worst thing you can do is put your kid in something that you know is not going to go well,” she said.

Providing parents with a comfortable place to meet, relax and share information is another goal of S.T.A.R. director Maria Sarabok.Staten Island Advance/Kathryn Carse

Sensory overload and waiting too long for a turn are things that can result in the child becoming upset and behavioral issues.

“This is the best of both worlds,” said Alana Miller whose two sons Mason, 4, and Ryan 5 ½, are in the middle class. After trying John in a karate class advertised for special needs children that did not work out, Mrs. Miller is appreciative of the small class and expertise of the instruction at S.T.A.R.S. that combines an understanding of the students’ physical capabilities and how to break down the activity in a way that limits frustration.

The middle class exhibits more confident moves. Ryan launches into the air to punch the balloon; John tumbles without assistance and so does Mason who says “I know how to do it myself.”

The atmosphere is the same in all three classes. Accomplishments are celebrated with high fives and applause. The enthusiasm is infectious and the nonjudgemental atmosphere of kids and adults is comfortable and encouraging.

Karen Torchio points out another aspect of the classes for her son John. “I am so glad he’s doing this. It’s a good focusing tool. This is also nice because there are so many cutbacks in special ed.”

S.T.A.R.S.:Specialized Therapeutic and Recreational Services3710 Richmond Ave., Eltingville
Lower level
 718-317-7030
maria@starspediatrictherapy.com
www.starspediatrictherapy.com

Ms. Sarabok points out that early intervention is crucial because research shows the brain has the potential to change with therapy that is early and often. Ms. Sarabok’s practice is out of network, but her office works with clients toward reimbursement.

One thing Ms. Sarabok did not anticipate was the response of parents with older children. Intending to have two classes, she opened a third upon request for 5 ½ year olds and up and it filled.

According to Victoria Lucido, although there are baseball, soccer and karate programs that are advertised for special needs kids, they are often not well organized for them.

“They are too crowded, not enough people are working with the kids who get overwhelmed with sensory overload. Here they are not made fun of or teased, and it is nearly one-on-one instruction,” said the New Springville resident.

Her 7-year-old son Jason’s response says it all.

“Jason loves to practice. He wants to get his black belt. It’s the first time he really feels comfortable, and he gets to feel he is doing what other people are doing,” said the New Springville resident. 

Kathryn Carse is the Advance Health and Fitness editor. Contact her at carse@siadvance.com.

Look for pictures of Davey participating in his new sport as soon as he gets moving!

Be gentle.

Three BUDDIES featured in film festival

Red Rock Film Festival opens with 'Buddies'

The Red Rock Film Festival will present “Colegas” (”Buddies”) as its opening night film on Thursday, Nov. 8 during the 6th annual film festival. Directed by Marcelo Galvão, “Buddies” is a feature drama about three young people who love movies and work at the video library of the institution where they have always lived.

“Colegas,” which is from Brazil and is scheduled for a 2013 release, has won international awards, including the Golden Kikito for Best Art Direction and Best Film as well as a Special Jury Award for its lead actors in the Brazilian Film Competition.

“We have a strong Latina fan base and we were thrilled to find this rare film from South America,” Festival Director Matt Marxteyn said. “The film is subtitled in English and the dialogue will be very familiar, as a lot of it is an homage to classics such as ‘Reservoir Dogs,’ ‘Three Musketeers’ and other films. Anyone you know who quotes one-liners from other films should definitely see this one.”

In “Buddies,” the characters get ideas after watching the film “Thelma & Louise” and decide to run away using the gardener’s old car to experience freedom. In pursuit of their dreams, they travel to uncommon places in search for three wishes: Stalone wants to see the sea to find his mother from Atlantis, Aninha looks for a husband who is a rock star and Marcio wants to fly. Having no money, they decide to steal clothes from a circus and rob stores armed only with a toy gun. They embark on several adventures until the media blows their escapades out of proportion.

What makes these three characters unique from the films they quote is that they all have Down syndrome.

“It raises several questions of our preconceived notions about people with Down syndrome. Can they drive? Do they love movies? Have dreams? Love? Marry? Joke? Run, jump and feel? Of course they do,” Marxteyn said. “The film is also very clear that they are also harmless and just playing a game.”

“Buddies” will play Nov. 8 at Pineview Stadium 10, 2376 East Red Cliffs Drive, St. George, at 6:45 and 8:50 p.m. with a festival opening ceremony at 6:15 p.m. Tickets are $10 for the film, $20 for the film and after party and $50 for the Opening Night Pass, which includes dinner, opening ceremony, film, after party and VIP access. Tickets and information are available at www.redrockfilmfestival.com or at the St. George Art Museum, 47 E. 200 North, St. George.

Be gentle.