Family that embraces daughter is great gift

by Hellen Middlebrook from Pacific Daily News:
For most of us, friends are a normal part of life. But what if your life isn't normal? And what if you aren't?
Deborah, our daughter with Down syndrome, has been growing up without friends. I know this is not the case for every child with disabilities; those who go to school usually experience some level of friendship. Deborah has been in similar settings, but these have not been enough to cultivate friendships.
In her almost 15 years, I've watched Deborah be patronized by adults and rejected by her peers. Adults often treat her as if she's a teddy bear -- something to hug and say nice things at. Very rarely do adults actually talk with her.
With the exception of one young lady who has left the island, those of her own generation have ignored her. If they do see her, they don't acknowledge her. Deborah has never been invited to a birthday party or an outing. But she has been told to "go inside" when others have been outside playing.
Such things are hard on a mother's heart.
I know it can be difficult to understand her; I know it's also difficult for her to keep up with a conversation. And I know if she is ever to have friends, it's up to me to create the situations to foster friendships.

Cheerleading a Charmed Life

by Rob Rogers from The Billings Gazette:

The tryouts were closed to everyone, parents included.

“She had done dance forever and so we thought she’d do dance,” said Kristy Schnetter. “But she didn’t want to do that. She wanted to be a cheerleader.”

Aspyn Schnetter, 15 and a freshman at Senior High this year, finished at Lewis and Clark Middle School in May and decided she was going to try out for the high school’s cheer squad.

For Kristy, it was a little concerning. But not necessarily surprising. It was just one more example of her daughter’s indomitable enthusiasm and life-loving drive. Aspyn has Down syndrome.

And so Kristy knew the experience would be fraught with peril. She wanted to be in that tryout for no other reason than to at least show support for her daughter.

“I was really nervous,” Kristy said.

Offers pour in to help Braedyn Stovman, mother surprised by hundreds of messages

by Sian Tompson from the Courier-Islander:
It did not take long for Campbell Riverites, present and former, to respond to a lonely little boy who just wanted to belong.
On Friday the Courier-Islander told the story of Braedyn Stovman, a 12 year old with Down Syndrome and other challenges.
He just wanted to have friends. He just wanted to learn how to skateboard. He just wanted to be accepted for who he is.
Brandi Morrison-Stovman, Braedyn's mom, said she has had hundreds of replies to her facebook page offering encouragement and friendship.
"When I read this story this morning it made me sick to my stomach and I cried," said Lydia, Mike, Chris, and Zach in an email to the Courier-Islander. "We as a family would like to offer our friendship to both mother and son. Our 18-year-old son is willing to teach Braedyn to skateboard, he skateboards all the time and at one time wanted to go pro. He is willing to spend some time to teach him."

Boy with Down syndrome uses iPad to help him communicate

by Courtney Smith from WTVM 9:
AUBURN, AL (WTVM) -
Like many best friends, 7-year-old Hal Bradshaw and Sophie Snyder don't need a lot of words, their bond is rock solid.
Hal has Down syndrome. He began signing as a baby, but verbal words remain a challenge.
"You want the best for your children, you want them to be able to output to the world, not just input," said Hal's mom Samantha Bradshaw.
WTVM.com-Columbus, GA News Weather
Hal began lessons with Kelly Cadden, a speech pathologist at All for Children in Auburn. His family bought an expensive language output device, but it was complicated and Hal didn't like it.
"We knew how much he loved playing games on the iPad, and so we started using it as a way of communication and he liked it and picked it up immediately," said Cadden. "He likes to carry it with him, doesn't like others to touch it, it is his voice, one he didn't have before."

Girl with Down syndrome excited to be first-time cheerleader

By Alex Cabrero from KSL.com:
With the school year winding down, many students are trying to figure out what to do this summer. But one junior high student already can't wait for the next school year.
Lily Smith is 14 and will be in ninth grade next year at Eisenhower Junior High, and she's going to be on the cheerleading team for the first time. It's also the first time this school will have a cheerleader who has Down syndrome. It seems so simple — cheerleaders cheer to get crowds to cheer. But any cheerleader can tell you it's so much more than that. There's makeup, pictures, pom-poms, and hugs — lots and lots of hugs. Something Lily is good at.

Teen with Down syndrome graduates prep school as part of innovative program his parents helped found

By Vikki Ortiz Healy, Chicago Tribune reporter:

A few months before Ryan Burke became the first student with Down syndrome to attend Notre Dame College Prep in Niles, his father made an emotional plea to his son's classmates.

"All we ask is that you say 'hi' to him. Just give him a chance," Kevin Burke recalled saying at a school assembly. "He'll take it from there."

Living up to his father's prediction — and demonstrating the success of a remarkable initiative Notre Dame hopes other Catholic schools will emulate — Ryan Burke, 19, graduates Saturday. His yearbook features pictures of him on the swim team, student council and marching band.

He also has something perhaps more precious — memories from four homecoming dances and two proms, as well as a cellphone filled with messages from friends he's made along the way.

The ceremony will mark a sweet victory for the Western Springs parents, who have been campaigning for Ryan's inclusion in normal classrooms since preschool. Kevin and Elaine Burke worked tirelessly to persuade Notre Dame's administration to become one of only a few Catholic high schools in the country with a structured program for students with severe special needs.

And Notre Dame officials say Ryan's example has left a permanent mark on the school, where students now don't think twice about seeing a classmate with special needs carrying the school banner at a football game or in line at the cafeteria.

Next year, the school expects 10 special needs students, with many more applicants than can be accommodated.

"He's a trailblazer," said Principal Dan Tully. "The families have been finding us, sometimes years before they go to high school."

Student With Down Syndrome Named to National Honor Society

by Brad Drazen from NBC Connecticut:
Jamie Roland, a junior at Hall High School in West Hartford, is being rewarded with membership into National Honor Society, but his journey to junior year has not been an easy one.

Roland has Down Syndrome. The family previously lived in Florida and his mother, Lisa, said she was told that a boy with Jamie's challenges didn't belong in a mainstream public school, so she home-schooled her son for several years before they moved to Connecticut in 2009.

"We came with a lot of baggage and we were very reticent about putting him in school," Lisa Roland said. "We didn't know how he was going to act or react to such a large environment."

In his three years at Hall High, Jamie has thrived both in and out of the classroom.

"The other students are nice, engaged and are fun to hang out with," the energetic 18-year-old said.

Lisa said they study together every night after school for at least four hours and that hard work has paid off.

Jamie's maintained a 3.6 grade point average and has been rewarded with membership into National Honor Society.

Let’s End the R-Word Once and For All

by John Franklin Stephens from Parenting:

John Franklin Stephens, Special Olympics Virginia athlete and global messenger, first spoke out in a 2008 essay called “Using the Word 'Retard' to Describe Me Hurts.” Last October, he wrote an open letter to conservative commentator Ann Coulter, calling her out for her use of the R word as a slur in a tweet. The letter has been viewed more than 3 million times. Frank, as he’s known to friends, has gone on to speak about discrimination all over the country. In honor of Spread the Word to End the Word’s annual day of awareness, we asked Frank to reflect on the Ann Coulter aftermath, the reason he now thanks her, and why he’s so much more than just a label. Frank will also be a guest on HuffPo Live on March 6 at 6pm EST.

It has been a little more than four months since I wrote an open letter to a political commentator asking her to reconsider the use of the term “retard” as a synonym for “loser.” I have received no indication that I have had any luck changing her mind.

I am pleased to say, however, that a lot of people have been exposed to our little debate. The overwhelming majority of comments have been responsive to my argument that the term is one of those unthinking slurs that we could best do without. We should think before we casually perpetuate ugly stereotypes.

People still ask me about what is so wrong with using the R-word. I can only say what it means to people like me when we hear it. It means that the rest of you are excluding us from the group we want to be part of. That’s the hardest thing--the loneliness. We process information slower than you do, so even keeping up in a normal conversation is a constant battle for us. We are aware when you stop and just look at us while we are trying to catch up. We are aware when you just say “uh-huh,” and then move on, talking to each other.

You mean no harm, but you have no idea how alone we can feel, even when we are with you.

During one of the television appearances immediately after my letter went viral, I joked that I wanted to “thank [Ms. Coulter] for introducing me to 3.2 million new friends on the internet.”

I confess: I really have loved all the attention. I loved being on television. I am proud that my story will be included in a book about young people who advocate for themselves and that something else I wrote is being published as part of a writing curriculum for middle-school students. I love being asked to speak to students about how hurtful bullying can be.

But none of this is how I dream of my life. Because I am so much more than that one word.

What I would really love to be known as is just another actor/screenwriter hoping to be discovered. You see, I have a role in a movie due out this spring called The Senior Prank, and I have written a screenplay for a short film called Common Dreams that I hope to get produced this year.

That’s how I see myself and what I am most proud of. That’s my dream: that one day you will look at me and see the person (and maybe the actor/screenwriter?) first, and not the disability. When that happens, we won’t any of us worry so much about labels.

Oscar winner Jennifer Lawrence and Andy Strunk, who has Down Syndrome, have been friends since childhood.

Jennifer Lawrence and Andy Strunk, who has Down Syndrome, have been friends since childhood. "We are like best friends," says Andy. "She's kind .... I think she has spirit." Andy collects every scrap of Jennifer memorabilia - and his bedroom decor attests to that. His cellphone also has the Oscar-nominated star in its speed-dial -- and she happily answers his calls! The two friends are former Kammerer Middle School classmates - and Indian Hills neighbor. His favorite photo is of a Lawrence and himself sitting by the pool in the backyard of the east Louisville home where she grew up -- from her "pre-star" days. For the Oscars, Andy is going to wear his tux. "He wants to dress up ... because Jennifer is going to be dressed up and he wants to celebrate," said his mother, Pollyanna Strunk. "He'll have his shirt on and his tie and all that ... just like he was there." And if she wins: "I will say 'Yay! Yay! Yay!' " Strunk said, and "will have to be calmed down," says Andy. Andy says he knows Lawrence will be "very busy" on Oscar night, so he'll send a text to her mother and Oscar date, Karen Lawrence, that says "congratulations" and "see you later." Everyone Matters loves Jennifer Lawrence as an actress -- and we also celebrate her as a human being. Thanks to shared abilities for sharing! sharedabilities.com and www.facebook.com
Join our community where Everyone Matters:www.facebook.com/everyonematters

siblings Josh and Grace share a message about love and respect

Josh and Grace Curley created a slide show about love between siblings and respect for all people that has gone viral. Over a million people have viewed, liked, & shared the slide show on Facebook and imgur. This is a great example of the power of advocacy through something as simple as 18 pictures with words printed on notecards. Thank you Josh and Grace!

Text from the notecards on the slides:

• My names Josh and I'm 18 years old!
• This is my best friend and big sister Grace.
• Some say I have a disability...
• Grace says I have a ability that may be jealous of...
• the ability to love unconditionally, be non judgemental,
• and I'm not afraid to be me :-)
• I have Down syndrome
• I have a extra chromosome.
• Grace says "Real friends down count chromosomes"
• People sometimes use really mean words but ALOT of people love me
• These mean words Hurt but don't describe me at all
• I am... Silly
• Funny
• Loving
• Helpful
• Smart
• And I have feelings just like you and your friends
• I'll give you a chance, if you give me one too.

students support homecoming queen nominee with Down syndrome

by Marc Valero from Tampa Bay Online:
Sebring High School students clapped and cheered for 26 senior guys and gals during the Homecoming Court Processional on Wednesday morning in the school's gymnasium.
The event gave students a chance to see the guys in dress suits and the gals in evening gowns before they voted later in the day for the 2012 homecoming king and queen.
One of the nominees the students selected for homecoming queen, and a favorite in many hearts, is Samantha Alamo, who has Down syndrome.
As he waited to walk in the processional, J.T. Gaskins said, "I am so nervous right now."
Commenting on Samantha, J.T. said, "I think it's great; I actually want her to win and I believe that she will, actually; she's a good candidate."
Samantha's caretaker is her sister, Krystle, who said relatives from Bartow and Kissimmee are coming to town to join her family in Sebring to see Samantha and celebrate her selection.
"Everybody is super excited," she said. "We're super excited. Everybody has been really, really good about having her in homecoming."
The year has gone by fast, she noted. Their mother passed away in April and their father died in April 2011.
"She (Samantha) got the great honor to come live with me," Krystle exclaimed.
Samantha said the best part of school is her friends.
She likes to bake cakes, cupcakes and brownies, Samantha said.
Sister-in-law Nicole Torres said Samantha also makes deviled eggs.
"I taught her one time and went to the house the next week and you were making them all by yourself," Torres said looking at Samantha.
The 26 nominated guys and gals relaxed a bit after being presented to the first of two assemblies of students in the gymnasium.
Samantha's homecoming processional partner, Dalton Helvey, said, "It's fun and exciting. It's a new and memorable experience. It's something different that you don't get to do every day."
This is Dalton's second year working with Samantha in class.
"She's a good friend of mine," he said. "We are glad she can make (homecoming) court this year.
Homecoming queen nominee Cheyenne Reeves said Samantha looked pretty and did well during the processional.
Commenting on Samantha, Principal Anne Lindsay said, "She's one of the whole school. It doesn't surprise me. They are all special students and they all have their own gifts and talents and so does she.
"We don't see her as different, we see her as one of us."
The boys and girls were paired up for the processional, but all the Sebring High students will vote for their favorite for king and queen, irrespective of the processional pairings.
The king and queen winners and three male and female runners-up will make up the Homecoming Court.
The winners will be announced Friday night at the homecoming football game at Firemen's Field.

Including children with Down’s syndrome in mainstream schools benefits everyone

by Katharine Horrocks from The Telegraph:

I was quite relieved last month when it came time for the children to return to school. Finally I could get some respite from looking after my two children - Alexander, seven, with Down’s syndrome, and Robert, four and a half. Although my boys are pretty good on the whole and play together quite well, they need almost constant supervision. Without it, Alexander can have a tendency to hit the TV, chew toys or wee on the floor, so vigilance is required.

One day just before the return to school, I was in the supermarket and I bumped into an acquaintance with two children, who said how sorry she was that the holidays were over and her children were going back to school. I did have to admit that I didn't share her view. Later that day, I bumped into the mother of an autistic child, and we raised our arms to the heavens with relief, and then compared notes on what time we started our first bottle of wine just to get through the day.

Alexander is now in Year 2 and, although the school he attends is very supportive, of course I worry about his progress and the growing gap between him and his peer group.

Alexander has a Statement of Special Educational Needs, and it is specified that he has 20 hours a week of 1:1 support from a teaching assistant. The school provides extra help to make sure he has support for the full day. He had been really looking forward to going back to school and seeing his friends, but it was inevitable that there will be some teething problems as the school has a shared Year 1 and Year 2 classroom, so there is a whole class of new children for Alexander to get to know, and they need to get to know him too.

It may sound awful to say but, for me, one of the worst parts of the day is picking him up, because of the prospect of hearing the teacher say: “I’m afraid Alexander hasn’t had a very good day…” I wait with dread to hear what has happened. Did he hit someone? Has he had more than one wee “accident”? Has he torn the pages from a book?

I am expected, after the event, to try and talk to him about it. In truth the teachers, TAs and I have a good relationship and work together very closely to figure out how to help Alexander get the best from school and to manage any behavioural issues.

I believe that the policy of “inclusion” – educating children with special needs in mainstream schools – is a good one, and for the majority of children with Down’s syndrome it is fairly successful. But it takes a lot of work from a range of people to make it happen, not least the parents.

Each term the school prepares an Individual Education Plan (IEP), which is then agreed by me and the teachers. Later Alexander will be able to comment on it too.

We normally pick three targets with clearly defined outcomes so that it is possible to tell when these have been achieved. From June until they are reviewed again in November, Alexander’s targets are:

• I will keep my hands to myself when I am sitting with the class on the carpet.
• I will know that when a collection of counters or objects are moved there is still the same amount.
• To hold a pencil effectively so that I can write my name.

We talk to him about these targets a little, but generally it is up to the teachers and TAs to follow through with actions to support him. We’ll play it by ear as to when he is actually asked what he would specifically like to work on.
The big event this term will be the Annual Review meeting, in which I meet with the teachers and various other professionals (speech and language therapist, educational psychologist, someone from the Down’s syndrome and Special Educational Needs Service) to discuss Alexander’s progress and set targets for the year. I have to steel myself not to become emotional at the meeting.
But in my opinion, one of the most important reasons for encouraging inclusion is that a whole cohort of children will grow up knowing someone with a disability – there are 45 more children who will go out into the world having experienced learning with someone (usually) less able than themselves, and I hope it will teach them a little bit about tolerance.
It does have its downsides, though. Alexander is seven and, although he has been invited to birthday parties, he has not yet been invited home to play with anyone after school and, frankly, I’m not sure how we would cope if he were, though Alexander has one particular friend who has been to play at our house a couple of times.
So far, the only times we go to other children’s houses to play are to those families I know from before children, or people we met at baby groups, and it is still seen as normal for me to go along for a chat, too.
But what is going to happen when Alexander turns 10, or 12, or older? We all know how important it is to have friends with shared experiences, and the same applies to a child with Down’s syndrome. That is one of the main reasons why many parents opt to send their child to a special school when it comes to secondary education, so that they have more of an opportunity to make friends.
For the time being, I make sure that we spend quite a bit of time with other “DS” mums and their children, to give Alexander an opportunity to make friends, and it has the added bonus of giving me and my friends a chance to let off steam to others who really understand!

A fight to make friends

 

Walk raises money for a statewide peer program

By Molly A.K. Connors from the Concord Monitor:

For the last 10 years, it's been easy enough for Susan Zimmermann's son, Oliver, to play with kids his age, even if they don't have Down syndrome like he does.
But in two years Oliver will be in middle school. By then, Zimmermann said, Oliver's condition will make it a little harder for him to keep up with his peers. There's the risk he could become lonesome and socially isolated.
"It's sad, but it's what happens," Zimmermann said in an interview yesterday.
She wanted to get Oliver involved in Best Buddies, a charitable nonprofit that pairs intellectually and developmentally disabled people with peers who have similar interests.
But New Hampshire doesn't have a statewide Best Buddies program - there are three chapters, but their presence is limited and the volunteers depend on staffers in Massachusetts.
So about a year ago, Zimmermann and her friend Sarra Dennehy, whose son is also 10, has Down syndrome and attends Concord schools, decided to start one.
They formed a board of directors and set out to raise $250,000, the amount Best Buddies International requires to establish a state office staffed with a director and program managers. Those people, in turn, bring Best Buddies chapters to schools across the state.
Yesterday, about 400 people showed up to help them at the inaugural New Hampshire Best Buddies Friendship Walk, a one-mile loop from the State House through downtown Concord. After the walk, advocates danced to live music, ate barbecue and played with Darcy, a Shetland pony who came from New Boston for the event.
Established by Anthony Shriver in 1989, Best Buddies is a 501(c)(3) nonprofit that works with nearly 700,000 people with and without disabilities worldwide.
The organization doesn't ask its participants to identify their disability, but one in six children in the United States is diagnosed with a developmental disability, which ranges from mild speech disorders to cerebral palsy and autism, according to recent data from the Centers for Disease Control and Prevention.
Peter Fleming, 47, of Manchester is one of the many people who said he's looking forward to finding a buddy in New Hampshire.
Fleming said he's already very busy working his job bagging groceries at Stop and Shop and volunteering with the Manchester Lions Club and the governor's commission on disabilities, but he agreed to be on the board of directors of Best Buddies New Hampshire.
Fleming is already part of "e-Buddies," an email pen pal program through Best Buddies International. Several years ago, he just happened to be paired up with Tim Shriver, the CEO of the Special Olympics and son of Eunice Kennedy Shriver.
At least once a week, Fleming said, he and Shriver exchange emails.
"We talk about the Red Sox; we talk about our families," Fleming said. "He's a big Red Sox fan."
Fleming said he got to meet Shriver in Washington, D.C., a few months back and would like a companion closer by, too.
"We can do stuff together," he said.
Taryn Seybold, a 36-year-old emergency room nurse, wants her son Nicholas, 16, to have a buddy, too. He's had a wonderful experience so far with Concord High School's peer-to-peer program, which pairs "typical" students with intellectually and developmentally disabled ones, Seybold said.
But she worries what will happen after Nicholas turns 21 and won't be able to go to school anymore. He has the same dreams as any other teenager, she said: get married, have a family.
She wants him to have a fulfilled life and not have to depend on her for all of his needs.
"Just like any kid, he doesn't want his mom hanging out all the time," Seybold said, walking up South State Street.
Nicholas followed closely behind, arm-in-arm with one of his three "typical" friends from the high school.
Nicholas's friends, who graduated Saturday, said they would volunteer with Best Buddies once it launched in New Hampshire. Sitting in the shade after the walk, they said it's possible they've benefited from the relationship more than Nicholas has.
"He's one of the nicest people I've ever met," Mckenzie Dow, 17, said, right before Nicholas grabbed a Monitor reporter's hand, kissed it and asked for it in marriage.
He uses that line a lot, they said.
Organizers said they've raised $40,000 toward their goal of $250,000. They estimate they raised at least $35,000 yesterday.
A statewide chapter can't come soon enough for Sarra Dennehy, who said it's becoming harder for her son, Liam, who has Down syndrome, to keep up with children in their neighborhood. The kids are kind, she said, but they've gotten bigger and faster and stronger, and Liam just can't hold his own.
"Liam watches all the kids in the neighborhood play," she said. "And it sucks."
If you slow down long enough to let him in your life, she said, you'll be better for it.
"It really opens your eyes to the heart and the soul of people instead of just the exterior," she said.