Friday, November 30, 2012

Becoming a champion! and rocking his extra chromosome!

What a happy ending to a story of a young man I have been following for a while now.  Kids with Down Syndrome need to be given the opportunity just like their typical peers.  What an inspiration.  Check out the video!

Underdog on top: Player with Down Syndrome wins Ishpeming team $25,000 and a trip to New York

Sports Illustrated Video: "Heart of the Team"
The Ishpeming High School football team, which capped an improbable run by winning the Division 7 state championship last weekend, isn't headed to Disney World.
Instead, the team is headed to New York City for the annual Sports Illustrated Sporstman of the Year ceremony.
The Hematites wouldn't be heading there without Eric Dompierre, a 19-year-old kicker with Down Syndrome who was almost kept off this year's team due to age limits set by the Michigan High School Athletic Association.
His father fought the inflexible rule all summer, and in August, the MHSAA finally approved a waiver allowing Eric to play this season as an extra-point specialist.
Sports Illustrated documented his inspirational story -- from the off-field drama to on-field bonds with teammates -- for its annual "underdogs" contest, allowing viewers to vote for his or other stories online.
Earlier this month, just days before they won a state championship, Ishpeming won the magazine contest, earning a trip to New York and a $25,000 grant.
Instead of flying 10 players to the December 5 awards ceremony, as originally planned, Sports Illustrated reportedly agreed to pay for a charter bus from the Upper Peninsula to New York so that the whole team can travel, and local boosters are raising additional funds for the full-team trip.
"The town has really behind this team and behind our efforts for Eric to play these last few years," Dean Dompierre told SI. "We needed signatures. We needed letters written and the town not only recruited other people from the state, but people around the country."
Eric's age-waiver wasn't the only adversity that the Hematites faced en route to their championship. Coach Jeff Olson lost his son to suicide over the summer, and the brother of starting quarterback Alex Briones died last year.
But Ishpeming overcame those hardships -- not to mention a size mismatch -- to defeate Detroit Loyola in the state championship. So much for "underdogs."

Be gentle.

Thursday, November 29, 2012

The controversy of prenatal testing continues

Prenatal testing and education after a diagnosis.  What information is giving to waiting parents to be?  Who helps parents understand their diagnosis?  Are parents given the opportunity to meet a person with DS or meet other parents?

Here is a letter sent to NDSS, NDSC, and GDSF.  What do you think?

An Open Letter to NDSS, NDSC, GDSF on Down syndrome prenatal testing resources

Global Down Syndrome Foundation (GDSF) and the National Down Syndrome Congress (NDSC) recently announced the publication of a pamphlet for patients going through prenatal testing for Down syndrome. It sparked discussion through a blog post by Dr. Brian Skotko, which was soon responded to in a joint press release by GDSF, NDSC, and the National Down Syndrome Society (NDSS). This is an open letter from concerned parents, professionals, advocates, and Down syndrome (DS) support group leaders who have been seeking answers from GDSF, NDSC, and NDSS since January 2012 on what plan they have for addressing the advances in prenatal testing. Our unanswered questions include:
  • Why a pamphlet was launched claiming to be the first, when the first already exists and was the result of collaboration between NDSS and NDSC before GDSF was really in existence?
  • Why did NDSS join the press release when it withdrew from the project over concerns involving the relationship with a single testing laboratory?
  • What role does Sequenom (and any other testing companies) have in developing and distributing the pamphlet?
Since representatives of GDSF, NDSC, and NDSS provided information through the November press releases, this letter also is issued as a public statement. We are all, first and foremost, a community, connected by loving individuals with Down syndrome; we want to support those who have questions about what living a life with Down syndrome means. It is our fervent hope that this letter will be viewed as a constructive effort to help expectant parents involved in prenatal testing for Down syndrome and to address the fragmentation over this issue.
Issue 1: Why was the pamphlet created, claiming to be the “first,” when the Lettercase materials are recognized by both NDSS and NDSC as the Gold Standard of information and have received the support of medical professionals?
The first sentence of the press release states that the publication is “the first Down Syndrome Prenatal Testing Pamphlet.” The pamphlet also is said to be in furtherance of the Kennedy-Brownback Act. These statements, however, run counter to an existing resource that was a collaboration between the two national organizations and done in furtherance of the Kennedy-Brownback Act: the Lettercase booklet “Understanding a Down Syndrome Diagnosis.” We ask why the pamphlet was introduced in this way, and believe it is counter to the history of an extensive effort by national and local organizations.
In 2008, the Kennedy Foundation generously funded the “First Call” program. Its purpose was to review the pamphlets local and National groups already were distributing to expectant parents and medical professionals. The First Call group was to select the consensus document to represent THE information to be provided about Down syndrome in the course of prenatal testing. NDSS’s then policy center director, Madeleine Will, spearheaded the effort with the Kennedy Foundation and NDSC’s then-board president’s wife took a grant-funded position to lead the effort. Additionally, affiliate and medical professionals from around the nation were involved in the reviewing process. Through a series of votes, THE resource was decided upon in 2009: what was then the Canister books and are now the Lettercase materials.
Following the NDSS and NDSC’s designation of the Lettercase materials as THE resource, an unprecedented meeting happened in 2009: the Down Syndrome Consensus Group meeting.
The Down Syndrome Consensus Group consisted of representatives from NDSS, NDSC, as well as the medical professional organizations of the American Congress of Obstetricians & Gynecologists (ACOG), American College of Medical Genetics (ACMG), and the National Society of Genetic Counselors (NSGC). In those discussions, the medical organizations made clear to NDSS and NDSC that unless the resource listed abortion as an option, along with continuation and adoption, it would be seen as an advocacy document that medical professionals could not and would not hand out. Each organization provided input into the Lettercase materials. Revisions were made and the Lettercase materials were re-issued with each of the organizations’ names appearing on the back cover. This remains the only resource that can say this. The credibility provided by listing ACOG, ACMG, NSGC along with NDSS and NDSC is unprecedented. The new GDSF/NDSC pamphlet, however, does not even list the Lettercase materials as an available resource, even though it is available for download for free, with printed copies being available at no-cost for medical providers for the past year.
That the Lettercase materials remain THE gold-standard resource was demonstrated as recently as this February. Leaders from the DS community participated in the NDSS Buddy Walk on Washington and the DSAIA annual conference. Representative Cathy McMorris-Rodgers, the co-founder of the Congressional Down Syndrome Caucus and a fellow mother of a son with Down syndrome, held a meeting with leaders from NDSS, NDSC, GDSF, and DSAIA. At that meeting, the Lettercase materials were held up as THE resource that the community needed to get behind.
Further, the medical community has endorsed the Lettercase materials. In 2011, the NSGC published its guidelines for delivering a prenatal diagnosis. Included in the approved resources were the Lettercase booklets. Just this Spring, a peer-reviewed articlepublished its findings identifying the Lettercase booklet as having the information focus groups of women had identified as what they desired when undergoing prenatal testing.
So, the Lettercase materials were selected as the superior product by the First Call program; were reviewed and vetted by representatives of ACOG, ACMG, and NSGC; and have been endorsed by medical organizations and peer-reviewed studies as approved materials to provide patients. The Lettercase materials were the first and remain the materials recognized by the Kennedy Foundation as being in furtherance of the Kennedy-Brownback Act. Therefore, the new pamphlet’s existence injects confusion as to what resource the National DS organizations support and we ask why the pamphlet was published, given the long and painstaking work involved in achieving consensus around Lettercase.
Issue #2: What is the relationship with Sequenom and the pamphlet?
When we began our correspondence in January, we asked GDSF, NDSC, and NDSS what their plan was. When we sent our first inquiry, Michelle Whitten with GDSF objected to being included in the list of organizations involved. She likened GDSF to being more like a local affiliate, not a national, and therefore did not belong in the list of organizations queried about the plan to address prenatal testing advances. Yet, GDSF is front-and-center in the press release and announcement of the new pamphlet.
Also, in response, we were assured that the new resource would be a unity resource of NDSS, NDSC, and GDSF—as recently as early June at the ISPD conference by Dan Ketcherside with Sequenom. The pamphlet, however, is not a unity project. NDSS was not part of the final project and does not appear as a listed resource in the pamphlet. The reason for NDSS leaving is still an issue that raises questions: the role of Sequenom.
When Sequenom was preparing to launch MaterniT21 to market (and ultimately did in October 2011), there were claims that it would not distribute the Lettercase materials because there was disagreement with the Lettercase materials expressed in the Down syndrome community. If that is the case, we ask who conveyed those concerns, what were the concerns, and if concerns about the new pamphlet have also been conveyed to Sequenom?
Our concern was further raised when a subsequent press release announced that Sequenom will be distributing the pamphlet as part of its marketing materials. Apparently, Sequenom will be the only testing company to distribute the pamphlet. It seems likely, then, that this pamphlet will become seen as “the Sequenom Down syndrome pamphlet.” This apparent exclusivity was the reason NDSS cited in a conference call for withdrawing from the project, and so its appearance on the press release “applauding” the new pamphlet needs to be further explained.
The press release about the distribution agreement raises further questions about the relationship with Sequenom: it states that Sequenom’s perspective was included in the pamphlet; that that perspective includes mentioning the financial cost of a child with Down syndrome in its marketing materials; and, states that no financial benefit or incentive is associated with the distribution agreement, but that GDSF and NDSC will have their logos and the pamphlet’s reference to only those organizations as a resource—but not NDSS, Lettercase, or other resources recognized by professional guidelines—in a pamphlet the press release says will be distributed to thousands. It is an apparent contradiction that there is no financial benefit or incentive when Sequenom will be carrying the costs for distributing most of the copies of GDSF and NDSC’s pamphlet. Further explanation of the relationship with Sequenom, and why no other testing laboratory has agreed to distribute the pamphlet, is needed.
Our unanswered questions boil down to the following:
  1. Why has the hard-won consensus forged around the Lettercase materials been set aside in favor of the new pamphlet, which carries less credibility and consensus?
  2. What is the relationship that GDSF and NDSC and Sequenom and other testing companies have to the pamphlet?
As we said at the outset, we raise these concerns in the hopes of bringing about constructive dialogue in which all who are concerned about the ethical administration of prenatal testing can speak and have their questions addressed.
When Sequenom launched and was soon followed by other companies last October, imagine what would have happened if those testing companies had agreed to distribute the Lettercase materials because the Down Syndrome Consensus Group had recognized it as THE GOLD STANDARD for expectant parents? And, for all the concerns raised by some about the cost of the Lettercase materials, would that concern have been the same if thousands upon thousands of copies of the Lettercase materials were distributed to the medical community across America this past year? Similarly, if the manhours and financing that has gone into developing the pamphlet and the website were instead put towards supporting the Lettercase materials, how might that have impacted the cost? So, a new pamphlet being available to parents and distributed to the medical community, unfortunately, comes a year too late and a year has passed without vitally-needed information accompanying the offering of prenatal testing or a prenatal testing result.
We hope you will respond to this letter and specifically answer the questions asked in it. If you do not respond, however, we will take your silence to be an admission of the foregoing statements and that the worst that we have thought actually did happen. A moment occurred in our generation for our community to stand united, and instead we failed to stand behind a consensus already forged to ensure thousands of parents received the best available information.
(organizations and positions are listed for identification purposes only)
/s/Frank Buckley, CEO, Down Syndrome Education International
/s/Nancy McCrea Iannone, Outreach Coordinator, KIIDS
/s/Laurie Kowalski, New Parent & Family Support Coordinator, The Up Side of Downs of Northeast Ohio
/s/Mark W. Leach, Chair, Informed Decision Making Task Force; Down Syndrome of Louisville
/s/Suzanne Shepherd, Co-President, Down Syndrome Association of Central Texas
/s/Robin Steele, Director, National Down Syndrome Adoption Network
/s/Stephanie Thompson, Assistant Director, National Down Syndrome Adoption Network

Be gentle.

Tuesday, November 27, 2012

Who was Jerome Lejeune?

Have you heard of Jerome Lejeune?  I had not heard of him before I started learning about Down Syndrome. He was a fascinating man who identified what makes our children so special.  Read on if you would like to learn more about the man who began to unravel the chromosome mystery associated with Down Syndrome.

About Jérôme Lejeune

Dr. Lejeune and JFK
Jérôme Lejeune was born in 1926 in Montrouge, near Paris. He studied medicine and became a researcher at theNational Center of Scientific Research (CNRS) in Paris in 1952. Dr. Lejeune was also the founder of the first specialized clinic for Trisomy 21 patients at Necker Children’s Hospital in Paris.
In July 1958, as he was studying chromosomes linked to Down syndrome, he discovered the existence of an additional chromosome on the 21st pair. With this remarkable and ground-breaking discovery, he renamed the condition trisomy 21 to accurately describe the genetic abnormality. For the first time Dr. Lejeune had established a link between an intellectual disability and its genetic cause. Dr. Lejeune would go on to discover the genetic cause of cri-du-chat syndrome and to also advance understanding of fragile X syndrome and others.
In recognition of his discovery, in 1964 Jérôme Lejeune was named the first Professor of Fundamental Genetics at the Faculty of Medicine of Paris. While increasing his research he continued to remain available to families, caring for disabled children, and to travel the world giving thousands of lectures on genetics. As a well-known geneticist, he was called to the United States to testify in court in Davis v. Davis, the Tennessee Frozen Embryo Case,in  Maryville, Tennessee in 1989.
Jérôme Lejeune received numerous awards and was a elected as a member of several academies. In 1962 he was honored in Washington, D.C. by President John F. Kennedy with the first Kennedy Prize for his research into genetic intellectual disability and for finding the genetic cause of Down syndrome. In 1969 he received the William Allen Award from the American Society of Human Genetics – the highest award possible for a geneticist.
Jérôme Lejeune died April 3, 1994, shortly after being appointed by Pope John Paul II to serve as the first president of the Pontifical Academy for Life.
Each year on the anniversary of his passing, a Mass is held in a large parish of Paris. The testimony of his life continued to inspire the work of doctors and researchers.
For more information of Jérôme Lejeune, please visit There is also a charming biography written of Jérôme Lejeune by his daughter, Clara Lejeune Gaymard, called Life is a Blessing.

Be gentle.

Sunday, November 25, 2012

Fake service dogs?

As a dog lover and a parent of a child with a special need, this is a story that brings disappointment to mind.  Service dogs are a necessary partner for many with a special need.  I have read about this trend of dog owners identifying their dog as a "service dog" when they are actually not.  Come on people.  A service dog belongs at it's owner's side.  I realize we all want to bring our dogs with us everywhere we go.  Instead of "breaking the rules" and calling your dog a service dog when he is actually not, let's advocate for changing the rules to allow our beloved pets to go everywhere with us.  Thoughts?

Fake service dogs provoke resentment, possible rule changes

Fake service dogs provoke resentment, possible rule changes

Palm Beach Post Staff Writer
Macy and Milo, blond Labs with constantly wagging tails, look and goof off like the other pooches at the dog park.
Their owner, 20-year-old college student Shoshana Rappaport, looks like the other doting dog moms, telling her dogs to knock it off when they play too rough and smothering them with hugs when they are worn out.
But Macy and Milo are not like the other dogs at the dog park. When Rappaport turns her head to the right and her neon orange hearing aid is visible, it is obvious that she also is not like the other dog moms at the park.
Macy and Milo are service dogs. They have been trained to alert Rappaport, who is profoundly deaf and also has vertigo, to vital sounds that many of us take for granted — car horns, door bells or a stranger approaching from behind. Shoshana also uses the dogs to support, stabilize and right her during vertigo episodes.
Because of the Americans with Disabilities Act, Macy and Milo can go wherever Rappaport goes — including restaurants, hotels, taxicabs and theaters. Also because of the ADA, Rappaport doesn’t have to prove she is disabled — a provision in the law designed to protect the privacy of people with disabilities and to prevent discrimination.
In fact, all any dog owner needs to do to be eligible for access privileges guaranteed under the ADA is to say that the dog is a service dog. And that has led some dog owners who do not have disabilities and whose dogs are not service dogs to use the ADA as a loophole to take their pets everywhere they go.
As more dogs are being trained to assist people whose disabilities are not readily apparent, such as deafness, post-traumatic stress disorder and diabetes, fake service dogs are seen more in public places, said John Ensminger, a New York attorney and author of the books “Service Dogs in America” and “Police and Military Dogs.”
“I think it’s definitely increasing,” said Ensminger, who said he is receiving more requests for interviews and more reports of fake dogs on his blog, The Dog Law Reporter. Among the most recent reports, show dogs being passed off as emotional support dogs, he said.
The phenomenon can infuriate people with real disabilities who rely on their highly trained dogs to lead as normal and active a life as possible.
“For everybody that needs a service dog, it’s a slap in their face for somebody to go on-line and get a service dog vest so they can go into a store or a restaurant with their dog,” said Joe Rainey, a Marine who was wounded in Vietnam.
Rainey, of Greenacres, relies on his service dog, Tanker, who has had mobility and stability training to assist Rainey when he is unsteady or cannot get up. “I am a Marine and it’s like someone pretending to be a Marine who was wounded while serving their country.”
The problem stems in part from the protections for the disabled set up under ADA. Businesses can ask only two questions when a dog enters their establishment: Is your dog a service dog? What tasks has the dog been trained to perform?
Businesses cannot require special identification for the dog or ask about the person’s disability. It does not matter whether the dog is wearing a service-dog vest or the owner’s disability is visible.
“A business person is very limited in what they can do when someone declares they have a service animal,” said Geoff Luebkemann, vice president of the Florida Restaurant and Lodging Association. “The average restaurant owner or hotelier just isn’t versed in this and they are concerned they will be the subject of an ADA lawsuit.”
Other laws supersede the ADA when it comes to air travel and housing, but the service-dog issue is posing special problems for airlines, especially those that no longer allow pets in the cargo hold.
Many passengers falsely believe that the ADA covers air travel and are surprised to learn they must abide by the stricter rules of the Air Carrier Access Act if they want to fly with their dog. Unlike the ADA, the Air Carrier Access Act allows airlines to require passengers with emotional support and psychiatric service dogs to prove they are disabled and that their dog is trained to assist them.
Many airlines require a letter on the letterhead of a licensed psychiatrist, psychologist or clinical social worker stating that the passenger has a medically recognized mental or emotional disability and is under the professional’s care. The letter must be dated within one year of the flight and also include the state in which the professional is licensed.
“People are going to be hard pressed to get psychologists and psychiatrists to sign letters,” Ensminger said. “I think this is an area where we are going to see a lot of friction.”
Nevertheless, there are enough passengers trying to board with emotional support and psychiatric service dogs — which fly in the cabin for free — that agents at ticket counters have been provided written guidelines on the law and the U.S. Department of Transportation has opened up rule-making for changes in rules on allowing such dogs on planes.
Ensminger owns a therapy dog, which is trained to go to schools, hospitals, nursing homes and other institutions to comfort and offer companionship. Therapy dogs are not protected by the ADA or the Air Carriers Act and although he knows he could pass her off as a service dog and fly with her to his winter home in Arizona, he does not. Instead, he drives the 2,600 miles.
“To be honest, I’ve been tempted,” Ensminger said. “But she is a therapy dog, not a service dog.”
When it comes to allowing service animals in condos and apartments with no-pet or weight-limit rules, the ADA is again trumped by another federal law — the Fair Housing Act.
Unlike the ADA, which defines dogs and occasionally miniature horses as service animals, the FHA is broader and protects other species, such as cats and birds.
Just as restaurants and airlines are seeing more unqualified service dogs, landlords and condo associations say tenants are seeking exceptions for their pets under the FHA.
“The trend has gone up and down since this service dog issue first arose,” said West Palm Beach attorney John Sheppard, who specializes in condominium and homeowner association litigation. “When it initially came up, there was a fairly high standard the owner had to meet to keep the dog.”
Those standards loosened and “if they could show a doctor’s prescription saying they needed a dog for some reason, that was enough to pass muster,” Sheppard said. The pendulum is swinging back and now condominium associations can ask specific questions about the disability and how the animal assists, Sheppard said.
Still, he said, “There are people who come in and have a dog and they say, ‘It’s my sister’s dog. I’m just watching it.’ Then they come out and say they have a disability.”
Is there a solution?
Corey Hudson, secretary of Assistance Dogs International, which has a well-known accreditation program that sets minimum standards for behavior and training, suggests some form of government-sanctioned certification for service dogs.
“We all get drivers’ licenses after somebody impartially figures out that you are capable of driving,” Hudson said.
Ensminger sees problems with that approach. Who will set those standards and how much will credentials cost? Professionally trained service dogs can cost more than $20,000. Each dog is individually trained to meet the specific needs of its owner’s disabilities. Many people with disabilities are on limited budgets and train their dogs themselves.
“What I’m afraid of is that if the government doesn’t want to get in the business and turns it over to private entities, that will mean people will essentially have to pay a significant amount of money to some organization that will bless their service dog,” Ensminger said. “I see that as a big problem.”
Rappaport, who herself trained Macy and Milo, has her own solution: confronting pet owners and businesses when she encounters misbehaving dogs wearing service dog vests.
“These people should be grateful they don’t have a disability,” Rappaport said. “Do they think we want to be disabled so we can take our dogs anywhere? Don’t they realize we would trade our service dogs to get rid of our disabilities?”

Service dog laws
Three federal laws grant service dogs special privileges:
Americans with Disabilities Act: Gives service dogs access to public places, such as restaurants, stores and offices. Owner may not be questioned about disability but may be asked about the tasks the dog performs. Harnesses or leashes must be worn at all times unless it interferes with the dog’s work.
Air Carrier Act: Enables service dogs to fly in cabin of airplane. Passengers with emotional support or psychiatric service dogs may be asked to provide proof of disability and treatment from mental health professional.
Fair Housing Act: Allows people with disabilities to keep emotional-support animals, even when landlord’s or association’s policy prohibits pets. Allows limited questioning about disability and animal support.
Types of support animals
Federal laws give access privileges to service dogs, including guide and hearing dogs. Therapy dogs and emotional support animals can be denied access to public places, airplanes and housing.
Guide dogs: Highly disciplined and trained service dogs. Assist blind and visually impaired people by avoiding obstacles, stopping at curbs and steps, and negotiating traffic.
Hearing dogs: Service dogs trained to alert the deaf and hard of hearing to common sounds, such as a doorbell, telephone, baby crying or smoke alarm.
Service dogs: Provide assistance unrelated to vision or hearing disabilities. Individually trained to meet unique physical, medical or psychiatric needs of owner.
Therapy dogs: Provide comfort and companionship to people in hospitals, nursing homes and other institutions. To encourage petting and avoid confusion with service dogs, often do not wear vests seen on service dogs.
Emotional support animal: Domesticated animals — not necessarily dogs — that provide therapeutic companionship and affection. No training required beyond that of a pet.

Be gentle.

Thursday, November 22, 2012

What are you thankful for?

Happy Thanksgiving.

Take a moment and reflect on what you have to be thankful for?

For me, I am thankful for family, friends, gentleness and peace.

Be gentle.

Tuesday, November 20, 2012

Teen actor inspiring other while rocking his extra chromosome

Another teen inspiring others.

Actor with Down syndrome encourages teens to reach for their dreams

Actor Peter ten Brink talks about his experience working movies Sunday during an event for teens with Downs syndrome sponsored

Actor Peter ten Brink his acting coach Sarah Rose Graber pose for phowith Mary Ann Hoshell Naperville during meeting Teen

Jacob Spenadel Glen Ellyn asks questiactor Peter ten Brink before screening one ten Brink's movies Sunday an event sponsored by

By Linda Girardi For The Beacon-News November 19, 2012 1:40PM

AURORA — Although Peter ten Brink is a successful actor, starring in several favorite roles, it is his inspirational life’s story that wins over his audiences.
“It would be great if everyone could reach for their goals, use their imagination and love themselves for who they are,” the actor said.
The 20-year-old ten Brink has Down syndrome. And when he isn’t working in theater productions or memorizing his lines for the big screen, he is an advocate for those with special needs.
On Sunday, he met with a group of teenagers from GiGi’s Playhouse Fox Valley, a Down syndrome awareness and educational center that provides specialized teaching and support for individuals and their families. Sunday’s program was at the Comedy Shrine at Westfield Fox Valley mall in Aurora, a couple doors down from GiGi’s Playhouse Fox Valley.
People with special disabilities “can get ahead just like any other person,” ten Brink told his audience, and he graciously shared credit for his success — with his parents, Frank ten Brink and Jeannine Cleary of Glencoe, who accompany him on the sets, and with his acting coach, Sarah Rose Graber.
“I sincerely love my family – they are the best,” he said.
He said his mother often reminds him to eat healthy. “Naturally I don’t – I love french fries,” he said, drawing laughter.
When a teen asked how old he was and said he was “cute,” ten Brink replied to his fan by saying, “Ditto.”
“When Peter was born schools were just starting to include students with special needs in the regular classroom,” Jeanine Cleary said. “This new generation coming up is completely comfortable and accepting of people with disabilities.”
His parents acknowledged the days on movie sets are long, but their son is passionate about acting and he has remarkable ability for memorizing his lines.
He began acting with the Special Gifts Theatre in Northbrook and performed in productions for his school, New Trier High School. He realized his goal last year after he successfully auditioned for the leading role in the Hallmark movie “A Smile as Big as the Moon,” which is based on a true story about a group of students with special needs who overcome obstacles to attend Space Camp in Huntsville, Ala.
On the big screen, ten Brink played a high school student with Down syndrome. His teacher was played by John Corbett of “Sex and the City” and “My Big Fat Greek Wedding.” The movie aired earlier this year on ABC-TV.
On the improv stage of the Comedy Shrine, ten Brink sat beside his acting coach Graber, who directs a theater program for adults with special needs.
Graber said she was impressed with ten Brink’s willingness to work hard, be imaginative and creative.
“It wasn’t just about learning to play this game, but it was how to play this right and get better at it. Peter definitely is very passionate about learning,” the acting coach said.
After meeting with the actor, the GiGi’s Playhouse teens watched a video of the movie with their parents and siblings, as well as about a dozen teen volunteers from GiGi’s Playhouse.
“We wanted to give the kids some inspiration,” said program leader Marissa Quiles Yelenosky.
“The movie gives me hope for my 5-year old daughter, Samantha. Whatever their dreams, there is something out there for all of our children,” Yelenosky said

Be gentle.

Monday, November 19, 2012

Pupdate Playtime fun

Pupdate time.

I love watching the dogs playing.  Sheer joy and happiness from the whole crew.  Running, jumping, hunting their toys.  Such a great way to relax and de-stress.


(Two coated males pups are still looking for their forever family.)

Be gentle.

Friday, November 16, 2012

Labels...... or are they words that hurt.

Labels.  I don't like them.  Are they just words?

Don't label people with Down syndrome

By David M. Perry, Special to CNN

Perceptions about Down syndrome have changed in recent years, says David M. Perry, who has a son with this disability.
Perceptions about Down syndrome have changed in recent years, says David M. Perry, who has a son with this disability.
  • Ann Coulter's "retard" comment not aimed at Down syndrome, she said
  • David Perry has son with Down syndrome and says culture has come far in accepting disability
  • He says some call Down syndrome kids "angels" but that's little better than "retards"
  • Perry: We should see humanity of those with Down syndrome -- they're people, not syndromes
Editor's note: David M. Perry is an associate professor of history atDominican University in River Forest, Illinois. His son, Nicholas Quillen Perry, has Down syndrome.
(CNN) -- "It breaks my heart to think how many people would not have chosen to keep that precious angel." -- Florida Attorney General Pam Bondi, speaking about abortion and Down syndrome at the 2012 National Convention.
"I highly approve of (Mitt) Romney's decision to be kind and gentle to the retard." -- Ann Coulter, tweeting about the third presidential debate.
"No one would call someone with Down syndrome 'retard.' I call you a 'retard.' " -- Coulter on Alan Colmes' Fox News Radio show.
David M. Perry
David M. Perry
Let's pretend that Ann Coulter is telling the truth in that last comment. Yes, she called President Barack Obama a retard, but at least she claimed she'd never insult someone with Down syndrome. Even if she's lying, we have come a long way. Children with Down syndrome still get bullied or even abused, and adults with any disability face an uncertain future, particularly in an era of austerity, but today few would call someone with Down syndrome a retard to his or her face.
For this, as the father of a boy with Down syndrome, I am grateful.
In fact, over the last 50 years or so, the lives of people with Down syndrome and other disabilities have improved in many remarkable ways. Most parents are now raising their children with Down syndrome in their homes rather than sending them to live in institutions. Government programs, especially through early intervention and special education, employ teachers and therapists who have helped these children learn beyond our wildest dreams.
Medical advances not only prevent many of the most dire threats to their health but begin to promise new treatments to make it easier for them to learn. Extended families, churches, community groups and nonprofits all work to support families such as mine.
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And sometimes, when relatives or church members or kind strangers meet my son or hear that I have a boy with Down syndrome, they smile and tell me that "people with Downs" or "Downs kids" are God's angels sent down to earth. I smile and thank them and agree that people with Down syndrome can be pretty great.
But while good intentions count for a lot, "angel" makes me no happier than "retard." Most parents who have spent time changing diapers, dealing with tantrums or trying to get a sleepy child, with or without Down syndrome, ready for the school bus in time know that "angel" doesn't always cut it.
People talk about Down syndrome "special angels" or "hidden angels" across the Internet and media. Reece's Rainbow Adoption Ministry, an organization that does spectacular work finding homes for orphan children with Down syndrome, has an "angel tree" on its website, with pictures of children in need of adoption. The founder writes, "The beauty and innocence that a child with Down syndrome brings to the world is truly one of Divine nature." This is a little more complex than "angel," but the focus on innocence points in the same direction.
No human, including my son, is entirely innocent or angelic.
Symbols, labels and representations -- in media, literature and our daily conversations -- shape reality. The words "retard" and "angel" represent images that dehumanize and disempower. Both words connote two-dimensional, simple or limited people. Neither angels nor retards can live in the world with the rest of us, except as pets, charity cases or abstract sources of inspiration.
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I am delighted to see the tide turn against the "r-word." After Coulter tweeted about the president, John Franklin Stephens, a man with Down syndrome, took to the Internet and to CNN. He argued that comparing the president to people such as him ought to be a "badge of honor" given the pathways he has forged through life's complex problems. The wave of support and publicity received by Stephens gives me hope for my son and for all of us who think our lives are improved by a society that includes everybody.
Language changes as knowledge and attitudes change. Doctors started using the word "retarded" to replace "Mongoloid Idiot." A lot of good came with that shift, because it indicated a new understanding that people with Down syndrome were not monstrously limited creatures best locked up in an institution.
Today, we talk about "developmentally delayed," and a lot of good has come with that shift, too. People see a child with developmental delays as having the potential to learn, to grow, to develop and to become a self-advocate.
And even Coulter, as a result, claims she would never call my son a retard. But other words will replace it. People will find new ways to use language to divide, to objectify and to dehumanize. The issue isn't language, not specific words, but representation.
My son is neither angel nor monster, just human. It's true that he's more confident in the world of empathy than of language. He reflects and intensifies the emotions of those around him. He meets love with even more love. These traits can be wonderful, and they're pretty typical of people with Down syndrome. But complex emotional lives define us as human, not angelic.
So let's listen to the rueful laughs of so many of my fellow parents who insist: "My child is no angel." Let's stand with Stephens as we fight against hate speech. Let's include people with developmental disabilities fully into our society. Most of all, let's always think of people with Down syndrome as people, first, not syndromes. Then the cruel words employed by clownish bigots will vanish into historical memory.

Be gentle.