Saturday, April 30, 2011

Poet George Estreich’s memoir on Down Syndrome

Award-winning Corvallis poet George Estreich will read from his newly released memoir, “The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit,” on Wednesday, May 4, at Oregon State University.
The free public event begins at 7:30 p.m. in the Journey Room of OSU’s Memorial Union, with a book signing to follow.
In “The Shape of the Eye,” Estreich tells the story of raising his younger daughter, Laura, who is diagnosed with Down syndrome. Interweaving the scientific with the poetic, Estreich reflects on the idea of inheritance — in terms of genes, family legacy, and history. “The Shape of the Eye” is the latest title to appear in Southern Methodist University’s Medical Humanities Series.
Timothy Shriver, chairman and CEO of the Special Olympics, said Estreich’s book “draws us each into a new view of what it means to be ‘human’ and what it means to be ‘different.’ ”
Estreich is the author of the poetry collection “Textbook Illustrations of the Human Body,” winner of the 2003 Rhea and Seymour Gorsline Prize from Cloudbank Books.

Friday, April 29, 2011

Sharon Stone helps to raise over $100,000

From the NDSS:

Actress & Philanthropist Sharon Stone helps to raise over $100,000 at the National Down Syndrome Society’s Annual Spring Luncheon in New York City.

Sharon Stone as the keynote speaker and presented the 2011 NDSS Luncheon Honoree Award to Jagatjoti S. Khalsa for his extraordinary work in the book I’m Down with You (, which seeks to capture the beautiful lives and faces of people living with Down syndrome in the United States.

Sharon Stone spoke about her passion and commitment in raising awareness for Down syndrome and the need to further educate the general public about the advancements and achievements being made by people with Down syndrome. Her dear family friend, Jim Burkhart, came out to support her. Sharon used to babysit Jim many years ago and they’ve remained close friends since.

Over 250 guests were in attendance. The event was emceed by CBS Early Show CO-Anchor Chris Wragge.

Thursday, April 28, 2011

White House Disability Group Monthly Call


Next White House Disability Group Monthly Call to Take Place April 28th

In order to help keep you more informed, the White House is hosting monthly calls to provide updates on various disability issues, as well as to introduce individuals who work on disability issues in the federal government.

The next call will take place on Thursday, April 28 at 2:00 PM Eastern.
Dial in for listeners: United States: (888) 428-4479              

Title: White House Disability Call (use instead of code)
Please call in at least five minutes prior to the start of the call.

For live captioning during the call, visit  

Tuesday, April 26, 2011

Research links cancer cells & cognitive deficits in Down syndrome


Dana-Farber Cancer Institute scientists have discovered new details of how cancer cells escape from tumor suppression mechanisms that normally prevent these damaged cells from multiplying. They also demonstrated a potential link between this cell proliferation control mechanism and the cognitive deficits caused by Down syndrome.

James A. DeCaprio, MD, of Dana-Farber said the results may provide new targets both for blocking the progress of cancer and perhaps for facilitating the growth of neurons in the developing brains of infants with Down syndrome.

DYRK1A's ability to turn off cell growth genes may also be involved in the lower-than-normal development of brain neurons in Down syndrome, say the scientists, who are investigating possible new avenues to treating the disorder.

While they tend to have cognitive losses, people with Down syndrome have a markedly lower risk of most types of cancer. DYRK1A is made by a gene on chromosome 21, which is present in three copies instead of the normal two in people with Down syndrome, causing the enzyme to be overproduced. DeCaprio said this abnormal activity could explain both outcomes: DYRKIA-triggered DREAM formation could help suppress cancers by driving them into senescence, and also reduce the generation of brain cells during development.

Saturday, April 23, 2011

Tell your Congress member to keep Medcaid funding intact

From the NDSS:

Action Needed
Contact your Senators and Representatives in their home offices over the Congressional break, April 18-31st.  They will be in their home districts so you will have access to them.  Visit or write and tell them how important it is for your child to be able to access HCBS.  If they hold town hall meetings, make sure you attend and tell your story.  Personal stories are important.  Talking points can include the following:
  • Individuals with disabilities will be forced into costly institutional programs if HCBS are lost.  This is unimaginable in the 21st century.
  • Individuals with disabilities can live in the community, work and become taxpayers at much less expense than costly institutional care.  They need supports to do so.
  • Medicaid reform is needed and we are willing to work with them to make it happen.
Developing a final budget will be a long process and the dialogue with your legislators should begin now!
If you have questions, please contact Susan Goodman at

On April 15, 2011, the House of Representatives passed a budget resolution by a vote of 235 – 193.  A budget resolution is not a law but a blueprint for the budget that is eventually developed by both houses of Congress.

The drastic Medicaid cuts and restructuring proposals within the recently passed House Budget Resolution, called The Path to Prosperity would  likely, if they became law, deny individuals with disabilities the medical and long-term support services they need to live and work in the community by capping the amount spent on the program.  This would lead to “block grants” or “global waivers.” 

block grant is an unrestricted federal grant and would mean that a significantly lower amount of funding would come from the federal government each year.  The states would have the discretion to decide who to enroll, what services to provide and who is eligible. 

The likely result of capping the amount of funding would be that individuals with disabilities would be forced into institutions as the only option for care.  This is unimaginable in this day and age given what we know about the great potential of individuals to live and work in the community and at much less expense to the taxpayers than institutions.

Some of the services, referred to as optional services, funded by Medicaid and the Home and Community Based Services (HCBS) Medicaid waiver programs which could be lost include:
  • health insurance coverage
  • supports to live in one’s own home including:  assistance making decisions, paying bills or other tasks involved in managing a home
  • job supports
  • speech or language services
  • transportation
  • communication aids

Thursday, April 21, 2011

Lady Gaga apologizes for using the R-word and signs the pledge

From Spread the Word to End the Word:

You may have seen yesterday that in an interview with DME, pop artist Lady Gaga used the R-word. When asked whether she plagiarized her song “Born this Way” from Madonna’s “Express Yourself,” Miss Gaga answered, “Why would I try to put out a song and think I'm getting one over on everybody? That's retarded.” Read the full story.

After a large outcry from the Spread the Word to End the Word community, your voices were heard and Lady Gaga issued an apology in a statement she provided to! Congratulations! In part, her statement read, “My apologies for not speaking thoughtfully. To anyone that was hurt, please know that it was furiously unintentional.” Read the full statement.

The campaign is about inclusion, acceptance, education and respect. In that spirit, take this opportunity to thank Lady Gaga for her apology. Also invite her, along with her millions of fans, to join the movement. To do this, we need your help. Below are three ways you can help right now.
  1. Facebook Lady Gaga’s Facebook page is located here: To post on her wall you have to “Like” her page (you can un-like it later if you want) but we encourage you to post on her wall a simple message that says, “Dear Lady Gaga, Thank you for apologizing for using the R-word. Please join us in advocating the inclusion, acceptance and respect of ALL people, including those with intellectual and developmental disabilities, by officially making your pledge not to use the R-word at and asking your fans to do the same. Thank you.”
  2. Twitter Please tweet this message: @LadyGaga Please join us @EndtheWord and take the #Rword pledge to promote respect and inclusion for all people.
  3. Email and Phone You can call or email Lady Gaga’s publicist, Dennis Dennehy, Head of Marketing at Universal Music/Interscope with this message: Dear Mr. Dennehy: As an [advocate for/family member of/person with] people with intellectual and developmental disabilities I am requesting that you please forward this message to Lady Gaga: Dear Lady Gaga, Thank you for apologizing for using the R-word. Please join us in advocating the inclusion, acceptance and respect of ALL people, including those with intellectual and developmental disabilities, by making your official pledge not to use the R-word at and asking your fans to do the same. Thank you. Respectfully, ______ Email:

Wednesday, April 20, 2011

Softball sisters

From ESPN:

"Michala is my biggest fan, my biggest critic, my best friend -- my worst enemy sometimes," Michelle said, punctuating the last category with a shake of her head and a laugh. "She's the kind of person I strive to be like. She's the definition of bold. She's bold, she's inspired, she's smart, she's funny, she can hold a conversation. She can get a group to come together around her. She's what I want to be."

Michala also has Down syndrome, a chromosomal condition affecting hundreds of thousands of children marked by an array of distinctive physical traits and varying degrees of cognitive impairment. But even as that reality undeniably shapes her world in countless ways, it does not limit the effect she has on others as she travels through it.

"When I think about, 'I don't want to do that paper,' I think about [that] my sister can't do that paper," Michelle said. "So you know what, let me go ahead and knock this out. Let me go ahead and knock this out because there are people who are in my life who don't have the opportunity I have. She's just so great. If you're feeling down, she's just the person who is like, 'What's going on?' And as annoying as it might seem at that time, she just brings light to your bad situation."

There was little good about the situation when Michala was born two months premature. Just 10 years old at the time, Michelle recalls her older brother Michael telling her they had to be extra nice to their mom -- a universal sign of concession among any siblings that something serious is afoot -- when she came home from the hospital. Michelle wasn't entirely sure at that time how big newborn babies were supposed to be, but she was pretty sure there was something extraordinary about her new sister fitting in just one of her 10-year-old hands. The fight didn't get easier for Michala, who needed heart surgery when she was 2 years old.

Yet if all those challenges and others posed by Down syndrome made it clear that Michala's experience was unlike those of her older siblings, and most other children, her family tried from the outset to treat her just like any other child. There wasn't any crash course in the specifics of Down syndrome for Michelle and Michael. Instead, they pushed Michala to keep up like any younger sibling, mindful only that things might take her a little longer. These days, she goes to school and does her homework at the kitchen table like any other kid her age. She's a constant in the bleachers (and the concession stand, the concourses or anywhere else she wants to venture) at Michelle's games, both in Evanston and at the tournaments in Arizona and California the Wildcats frequent during the season's opening months.

And, of course, she is enough a part of Michelle's teams to call the occasional meeting. "I'm so happy that we let her experience all these things that a lot of kids don't experience who don't have disabilities," Michelle said. "She just has grown so much, I think, from being around teams and being around people I have played with and seeing all these things and picking up things."

That list of things includes one of the gadgets increasingly ubiquitous in the preteen set -- a cellphone. And with a list of many of Michelle's current and former teammates programmed in it, Michala is in constant communication.

"She's a tough, tough girl," said senior Jordan Wheeler, a frequent recipient of the calls and texts and one of Michala's longest-standing confidants on the team. "She's a tough judge. She's the one who is going to tell you when your hair looks a mess or your jersey is untucked. She just doesn't hold back, but that's one of the best things about her. That's one of the best things you would ask for from your closest friend is to be brutally honest. And she's just so lively and vivacious. She just has that spirit about her that she's going to be as blunt as she wants to be."

She's seen her little sister grow over the past four years, how her speech has improved to the point that she's universally understood and how she's able to gauge what's funny and how to make people laugh. She says she's not worried about her sister's future, that she believes Michala can find work and be self-sufficient in the future, especially with such strong family support behind her. Her only concern, she notes with a certain sisterly dryness, is that Michala may throw too many parties as she gets older.

In her pride is the other half of the story. Michelle's softball exploits gave Michala a setting in which she could find her voice, but that might have been a two-way street.

"That's one of the things that stands out to me the most about Michelle, is that she will give you the clothes off her back, she will give you all the time she has in the day just because she knows that you need her."

Perhaps she is that way because of how much her sister needed her. Perhaps Michala is the effervescent, charming girl that she is because Michelle was that way all along. Perhaps, as is so often the case, it's a little of both. And as much as they mean to each other, as one of the most productive on-field careers in Northwestern history winds to a close, it's clear that home runs are the least that Batts -- both Batts -- have to offer to an entire program.

"How our team celebrates Michala is a big part of who we are."

The Politics of Down Syndrome


Kieron is father to Tanzie (aged 6, who has Down syndrome). He was in the audience at a Frankie Boyle show, and was surprised to hear stereotypes of people with Down syndrome peddled as humour, an altercation took place during the show, and afterwards his wife Sharon wrote a blog about the evening, which resulted in major press coverage.

Are we a more accepting society than ever before? Is there still a 'them and us' division between the disabled and 'everybody else'? The Politics of Down Syndrome looks at how we got to where we are, from the racist roots of its identification to the search for a blood test to screen for the condition today. Down syndrome is the most common form of learning disability, shared by all classes and races, yet it's one we rarely address our feelings about, head on. This book, direct and questioning, takes a view about where we go from here and the opportunity for society to fully enjoy the benefits of being inclusive.
Fascinating - at last a concise, well written examination of Down's syndrome which not only presents a historical perspective and political analysis but has the added advantage of deriving from personal experience.
Andy Merriman, Writer and broadcaster, co-author of BBC Radio 4 drama Minor Adjustment
This is a timely book that is as important as it is unusual. The 'problems' of people with Down syndrome are often discussed – less so those of the world they find themselves in. Political decisions that profoundly affect (or even prematurely end) the lives of people with Down syndrome are taken by policymakers with little knowledge of the condition and almost always without asking people with Down syndrome what they think. This book highlights many of the prejudices behind these decisions, and many of their consequences. In so doing, it provokes a debate that is urgently needed – one that is not just about Down syndrome but about human differences, human diversity and the defence of individual human rights.
Frank Buckley, CEO Down Syndrome Education International.
Author Information:
Kieron is father to Tanzie (aged 6, who happens to have Down syndrome) and was recently involved in the incident with comedian Frankie Boyle. He is MD of The Book Depository, the UK's largest specialist online bookshop.
Kieron is a Trustee of Down Syndrome Education International the world's leading academic research based Down syndrome charity all royalties from the book will be donated to the charity.

Faces of Hope: A Family Album

From The Middletown Press:

Resident Christine Wilson saw having an extra, 21st chromosome as a gift and welcomed a new experience when her son, Willi, was born with Down syndrome.

After years of living through the ups and downs of being a parent of a child with Down syndrome, the positive experience won out.

Wilson recently released her book “Faces of Hope: A Family Album,” dedicated to anyone touched by a child with Down syndrome.

“What I really wanted to do is share hope and understanding with people whose child is diagnosed with Down syndrome,” said Wilson, a special education teacher in Stonington. “I hoped to comfort anyone who embarked on the wonderful journey.”

While Wilson acknowledged there is information available, she said parents aren’t always given good news about Down syndrome and often the diagnosis is viewed as unpleasant.

“You have to take a breath and realize you’re not alone and then realize what a gift you’ve been given,” Wilson said.

According to Wilson, an average of 90 percent of women will choose to terminate their pregnancy when told their baby has Down syndrome before they are given any counseling or information about it.

“It was a little frightening. I’ve had people come up to me saying, ‘Did you ever think about giving him up?’ A special ed teacher asked me that,” said Karen Palilla, whose son, Philip, was featured in Wilson’s book. “The book helped through challenges. It brings you back down to earth again.”

Palilla, of Newtown, said that while there are great challenges that come with parenting a child with Down syndrome, the rewards are even greater.

Wilson aims to capture the rewards in her book, which is filled with black and white photographs of children affected by the syndrome and inspirational quotations.

“It just touched me like you wouldn’t believe,” said Palilla. “I took the book into my office and shared it with fellow employees. I think it helps with the stereotypes. Some people who have always been a little standoffish to talk to me about Philip came up to me saying that the book was beautiful.”

Cathy Lawlor of Arkansas, whose daughter is in the book, said that when she met Wilson she welcomed her to “the club.”

“It’s a club she never intended to belong to, but one that is amazing,” said Lawlor. “She was on a quest to find a family-friendly book about Down syndrome that wasn’t depressing or negative and I thought her quest was wonderful.”

Lawor said the book has helped with stigma in a world where everyone is focused on perfection and her question was, “What’s normal?”

“If I had to do it all over again, I would, but I would cry less. It’s been an awesome ride,” said Palilla.

Rocky Mountain High's secrect weapon


Rocky Mountain High School baseball coach Scott Bullock never has had to search for his team's character. It was there when the Lobos won the past four big-school titles with skill, class and academic acclaim. They're in the mix for a fifth this spring.

Perhaps that's because Bullock, from age 6, learned to grow up fast. It was then his older brother, Dean, had a diving accident that led to his becoming a quadriplegic. Six months after his brother's accident, his mother died. His brother passed away in January at age 48.

As for his identity, the person Bullock ultimately became as an adult has also been greatly shaped by his son, Tagg, who will celebrate his seventh birthday next month. A short, stocky bundle of energy bound for first grade next year, Tagg was born with Down syndrome, a condition caused by the presence of an extra copy of the 21st chromosome. He has impairment of cognitive ability and physical growth as well as the distinctive facial features associated with Down syndrome, but Tagg's ever-busy, well-rounded father couldn't be prouder.

"We didn't know about it until he was born. We were thrilled to have a child," Bullock said of himself and his wife, Michelle. "Not knowing a lot about Down, not knowing enough that he had special needs, was extremely painful. Our emotions were mixed."

Bullock, 40, had been shocked and shaken before by unexpected news, so why should greeting his unexpected special guy have been any different?

"It was tough," he said. "The toughest thing for me was that he wasn't the kid you were expecting. That was hard. But not for one second did we ever lack the love that we feel for this child."

Bullock, a native of Torrington, Wyo., who teaches health and physical education at Rocky Mountain, had encountered Lobos students with Down syndrome and calls them "great kids."

Tagg's presence seems to bring out the best in others, creating a balance of caring and feeling fortunate for themselves.

He is a regular visitor to Lobos' games and practices, where he has free rein to go through virtually every players' bat bag. Throwing the ball or hitting? Forget it. All he wants is a ride when the cart is used to drag the infield and the chance to roam from player to player.

"The guys are very patient with him," Bullock said.

Said Rocky Mountain senior pitcher-outfielder Eric Ferguson: "It makes us realize that everything you've got is important, and we're lucky."

Rocky Mountain athletic director Wayne Moddelmog sees the gift Tagg provides the school.
"That whole relationship that Scott has with Tagg and Tagg has with our baseball community and our Rocky Mountain High community has really been a neat thing," he said. "I think it really puts life into perspective."
Said Lobos pitching coach Glen Schwab: "(Tagg) and Coach have such a love affair."

Don't underestimate Tagg. He's strong, Bullock said. Likes to go back and forth in the swing in the family backyard. And keep him away from the pizza, ice cream and hot dogs.

"He brightens up your day," Lobos senior pitcher Chris Bonk said.
Added Lobos senior pitcher-infielder Jess Amedee, "He's unbelievable, a great little kid who makes everyone happy. He has a ball, and it's awesome."

"Scott teaches the kids more than just baseball," Moddelmog said.
The team is always looking for ways to give back throughout the Fort Collins community. After last week's victory over Chaparral, Bullock and his father presented a $5,000 check to Craig Rehabilitation Center, which gave his brother so much over 34 years. The money came from his brother's foundation.
Schwab got misty-eyed when recalling it while watching Bullock parade Tagg through the infield after a game Tuesday.

"And that's why that guy right there is the best at what he does," he said, pointing at Bullock.
Bullock will settle for second, but only if it involves standing right behind his son.

"Tagg has such a tremendous outlook on life," Bullock said. "We can all learn something from him."

Managing offensive comments on Facebook


When it comes to Facebook, what goes up may not come down, at least not without a fight. In many cases, the social networking giant has been slow to act when it comes to offensive content and fake profiles.

Robin Sinkhorn, mother of actress Lauren Potter, who plays Becky in the popular TV series "Glee," learned this last year. Potter has Down's Syndrome. When an onslaught of offensive messages suddenly appeared on her authorized fan page, it took her mother hours -- then days -- to delete them and block the offenders.

"When it was time to protect my daughter, it wasn't easy to do," Sinkhorn recalls. "I ended up having to delete everything -- even the pictures we wanted. [Facebook] needs to be more user-friendly for parents."

The incident had a happy ending when fans from around the world posted updates supporting Potter. The mother and daughter still use Facebook, in part to spread the word about a campaign to raise awareness that using "the R-word" (retard) in any situation -- online or off -- is not okay.

Ilinois moves to remove the R-word


Illinois legislators have joined a nationwide effort to retire the word "retarded" from law books. Measures that would wipe the offensive term from state statutes recently sailed through both chambers of the General Assembly.

The phrase "mentally retarded" was scratched from federal law in October 2010, and replaced with "intellectually disabled." President Barack Obama signed Rosa's Law in honor of an 8-year-old Maryland girl diagnosed with Down syndrome who helped to change the wording of her state's laws.

Since the federal law change, a national movement called "Spread the Word to End the Word," has been mobilizing change at the state level and encouraging people to pledge not to use the word "retard."

One advocacy group involved in the movement, the Arc of Illinois, inspired state Rep. Emily McAsey, D-Lockport, to propose the House bill.

The other chamber gave the go-ahead to a broader measure sponsored by state Sen. Matt Murphy, R-Palatine. Murphy's measure would replace every instance of "crippled" in the state's books with the term "physically disabled."

Both bills (SB1833 and HB2976) need approval from the second chamber.

Florida Governor reverses descision to cut funding for people with disabilities

From the Miami Herald:

Florida Gov. Rick Scott said Thursday he would rescind his order to cut state payments for disability services after House and Senate leaders agreed to fill a $174 million deficit.

The announcement comes two weeks after Scott informed lawmakers he would invoke emergency powers and cut up to 40 percent the rates charged by group homes and case workers who help the developmentally disabled.

“There are so many parents who can breathe a sigh of relief because they can get the services they need,” said Kingsley Ross, an advocate and lobbyist for Sunrise Community, a Miami-based group home operator. “It’s fantastic.”

Scott said he had a deal with the House and Senate to pay for the projected deficit. The House budget proposal included the money, but the Senate’s did not.

“I was concerned we would run out of money,” Scott said. “I will be pulling my emergency order and making sure that our providers have the funds that they need to make sure that they keep taking care of individuals who really need this care.”

After Scott’s order, Senate President Mike Haridopolos said he was looking into the “legalities” of paying for the gap.

“I’m very sensitive to this,” said Haridopolos, a Republican who is challenging Sen. Bill Nelson for the U.S. Senate in 2012.

Senate budget chief J.D. Alexander on Thursday confirmed the Senate would fill the deficit, but that the Agency for Persons with Disabilities was on notice. “No agency will ever overspend its budget authority,” said Alexander, R-Lake Wales. “It will not happen again.”

The agency provides services to about 30,000 Floridians with cerebral palsy, autism and Down syndrome. More than 19,000 people are on a waiting list and receive no services.

The deficit — which exceeds the agency’s spending authority by nearly 20 percent — is partly the legacy of lawsuits, poor planning by the Legislature and a nearly $20 million veto by Scott’s predecessor, Charlie Crist, who starved the program of savings when he refused to trim provider rates last summer.

“This gives the agency enough to pay its bill through the end of the year and means it doesn’t start the year with a deficit, which it has the last five years,” Ross said.

Scott’s decision to cut rates sparked protests. In Tallahassee last week, hundreds of protesters rallied outside the Capitol and then crammed into Scott’s office. Some group homes announced they would have to close.

“Maybe they realized they can only push people so far and they can only cut so much,” said Dennis Shelt, who runs Community Circles Inc., which provides services to the developmentally disabled in St. Petersburg and Clearwater. “There are people around the state who wouldn’t survive the kind of cuts they were talking about.”

Sleep research focusing on adults with Down syndrome

From Edinburgh News:
A study by Edinburgh University and NHS Lothian is calling for adults aged 16 and over with Down's syndrome, and their carers, to take part in research into sleep patterns.

Sleep apnoea - pauses in breathing during the night - affects around two to four per cent of adults. It is more common in people with Down's syndrome, but the exact prevalence among adults with Down's is unknown.

Disrupted breathing during the night can affect a person's health, with an increased risk of heart attack, stroke and high blood pressure.

The research aims to recruit as many people with Down's syndrome as possible to fill in a questionnaire.

Following analysis of the home sleep study, 70 adults with Down's syndrome and sleep-disordered breathing will be invited to a clinical trial.

A mother with Alzheimers and her neighbor with Down syndrome

Sometimes in life we lose sight of what is really important. We dwell on the past, worry about the future, and miss out on the amazing experiences that are happening right in front of our eyes.
This is a story of tragedy, family, love, and understanding that will warm your heart.
By Lisa Moore for the South Charlotte News:
Last in, first out." This motto explains why Alzheimer's patients cannot remember what happened five minutes ago but can recall memories from years before with vivid detail.
Old memories have been stored in the brain but new ones are not stored because the hippocampus, a special structure located in the frontal lobe that is associated with memory, no longer functions correctly.
This is why my mom, Rose Beebe, 88, can't recall if she had lunch but can still describe getting her coveted first job at age 18 at the post office during the Great Depression. I am always amazed at the events she can recount with perfect clarity. One of particular interest is about my sister, Christy.
I never knew Christy; she was born several years before me with Down syndrome. She passed away at 6 months old due to heart complications associated with this genetic condition. I don't recall at what age Mom first told me about Christy, but she rarely talked about this devastating loss that left my parents, who were in their 20s, grief stricken.
I have often wondered what it would be like if Christy were alive and what kind of relationship we might have today. I am sure she would have a special place in our family and our hearts.
Interestingly, I am hearing more about Christy now that Mom has Alzheimer's than I ever have. I had no idea the pain Mom still carries about her beloved child. Sometimes she becomes pensive and expounds on her loss.
"I love my kids and I mean it," she said. "We had something wrong with one. It was Christy. It hurt me real bad. I couldn't even accept it. I thought God had done something wrong. Why, when this is what we want? A lot of people don't want a baby. But it happened and I never got over it. She was mine and it was a sadness to go through it. It wasn't her fault, or my fault or her dad's. It was just an awful experience."
As I fight back tears, I grab Mom's hand to offer support as she emotes the grief she has been carrying around for more than 58 years. I wish I could erase all the pain she still feels.
"Why did that have to happen to me? Do you see a reason for it? I could never get my heart up with such a thing. My heart never agreed with it," she said. "Life can be bad, so many things can happen. Life is a mystery. But we've had good times, love and fun."
Mom puts her head on my shoulder for a few seconds and I embrace her. Then she quickly shifts back into Alzheimer's mode, asking me what my name is.
Mom moved into a memory care facility a few years ago and my daughter, Jazlyn, 17, and I visit on a regular basis. Perhaps it is no coincidence that the woman occupying the room next to Mom's has Down syndrome and is around the age Christy would be.
At first I felt uneasy around her; she walked funny and made guttural noises. I didn't know how to tune into her world and communicate with her. Jazlyn, on the other hand, was completely intrigued and quickly became friends with her. Now this woman is a big part of our lives, continually showing us what joy really is.
On each visit, Jazlyn bounds down the hall and sticks her head in this sweet angel's room. When she sees Jazlyn, her mouth drops open and she gasps with delight. With outstretched arms she lumbers across the room yelling loudly, "Ohhhh."
She throws her arms around Jazlyn with the force of an Olympic wrestler and squeezes her with all her might until she shakes. She grabs Jazlyn's hand and kisses it and then makes her way up to her cheek for a few pecks. She repeats this ritual a few times. Then she notices me and I get lavished with the same attention as she continues to squeal with delight.
Jazlyn and I have decided this woman is the purest and happiest person we know, untainted and unaffected by the world. Our time spent dancing, playing and laughing with her is such a gift and a lesson in compassion and acceptance. I am touched when I see Mom caress her face and hug her.
We have learned to speak this lady's language and it is simple: unconditional love. It's a language we all know but sometimes forget. I am grateful for this opportunity to stay in touch with my heart.
This woman has changed my life by helping me appreciate life in all its beautiful forms. And she's become the sister I never got to have.

GiGi's Playhouse

What started as a local Playhouse in a suburb of Chicago has turned into an international phenomenon, spreading awareness and inspiration to everyone it touches. GiGi's Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community!
  1. Pre-Natal Diagnosis Support – GiGi's offers accurate and positive information about Down syndrome to families who have just received a pre-natal diagnosis.
  2. Open Play – Promotes networking and socializing for families with children of all ages with Down syndrome.
  3. Crawlers Program – Helps facilitate and strengthen the skills in children who are at the developmental stage of crawling.
  4. Walkers Program – Facilitates and strengthens the skills in children who are beginning to walk.
  5. 2 & Under Group – Promotes positive beginnings for families with an infant or toddler with Down syndrome, with a focus on ongoing support and networking for new and current families.
  6. Hop, Skip and Jumpers (3-5) – Promotes friendships, social skills and interactive play through creative and educational activities for pre-school and kindergarten-aged children.
  7. Playhouse Pals (6-8) – Promotes friendships, social skills and interactive play through structured and educational activities for children ages 6-8.
  8. Kid's Club (9-12) – This face-paced program promotes friendships, social skills and communication through creative and educational activities for children ages 9-12.
  9. Teen-Tastic – This group promotes friendships, social interaction and communication through a variety of social activities, outings and games for teens aged 13-17.
  10. Friday Friends – This group promotes friendships, social interaction and communication through a variety of social activities, outings for adults 18 and over.
  11. Daddy and Me – Promotes positive interactions and social networking between children with Down syndrome and their male role models
  12. Sibling Time – (coming soon!) Organized group that offers a positive place to share about life with a sibling with Down syndrome.
  13. Family Night – This program promotes positive beginnings for new families as well as offers with a focus on positive social interactions among peers and siblings
  14. Leaps and Bounds - This contemporary dance class is fun for all ages!
  15. Music Class – Each session explores a different aspect of music appreciation.
  16. Hispanic Group (Nuestros Angeles) – Provides support, friendship, networking and socializing for Spanish-speaking families
  17. Polish Group – Provides support, friendship, networking and socializing for Polish-speaking families
  18. Literacy Program – This internationally renowned program teaches and reinforces children and adults with Down syndrome reading, comprehension and phonics skill.
  19. Math Program – Students in this program are taught applicable math skills with custom made materials.
  20. Skill Builders – Reinforcing school-aged skills, Skill Builders incorporates handwriting, math, social skill development and phonics.
  21. Parties – Each Playhouse has parties for …just about anything! Halloween, birthdays, 4th of July, etc. Check your local website calendars!

Saturday, April 16, 2011

Becky gets a boyfriend on Glee

From the NDSC:
At the NDSC convention last year in Orlando, the National Media Award was presented to the television show, Glee, for its inclusion of actors with Down syndrome in meaningful roles. We watch with anticipation each week to see if Lauren Potter as cheerleader Becky Jackson, and Robin Trocki as Sue Sylvester's sister, Jean, will make an appearance. And each time they do, we cheer them on!

In an upcoming episode, we'll have a new character to get excited about! Self advocate Luke Spinelli will appear as Becky's boyfriend, Jared. Luke and his mom, Karen, attended our Sacramento convention in 2008, where they learned about DSA of Los Angeles' casting liaison service. Hooray to Luke and Gail Williamson at DSALA and to the NDSC convention and the connections made there!

FYI, Lauren Potter will be a speaker at the convention in San Antonio this summer! Registration is now open. Visit the NDSC website for more information.

Friday, April 15, 2011

Apple’s Commitment to Accessibility

For more than 20 years, Apple has provided new and innovative solutions for people with disabilities, allowing them to access — and enjoy using — the Mac, iPod, iPhone, iPad, and Apple TV.
Apple includes assistive technology in its products as standard features — at no additional cost. For example, iPhone, iPad, iPod, and Mac OS X include screen magnification and VoiceOver, a screen-access technology, for the blind and visually impaired. To assist those with cognitive and learning disabilities, every Mac includes an alternative, simplified user interface that rewards exploration and learning. And, for those who find it difficult to use a mouse, every Mac computer includes Mouse Keys, Slow Keys, and Sticky Keys, which adapt the computer to the user’s needs and capabilities.
As part of our commitment to accessibility, our Retail Associates are specially trained to serve customers with disabilities. Please ask an Associate for assistance if you have difficulty viewing a product when you visit an Apple Retail Store. The Associate will be happy to assist you by moving displayed products to more accessible locations if possible.
On this site, you’ll find additional information about the many accessibility features built into Apple products.

Thursday, April 14, 2011

Tim Shriver on Bill Maher

Tim Shriver talks with Bill Maher about the following topics:

  • people with disabilities are the largest population discriminated against in the world (300 million people globally)
  • 95% of disabled children outside of the US do not go to school or are not allowed to go to school
  • children with disabilities are 3x more likely to bullied and average length is over 1 year
  • change the public behavior by civil rights movement of the heart - work together & play together
  • special olympics sponsors 40,000 events a year to bring people together
  • address the blind spot when people look the other way when change is needed
  • Ben Stiller in Tropic Thunder - there's a line between laugher and causing pain
  • people are fighting and trying to fit in and not to be excluded; picking on them crosses the line into mean
  • don't be a cop on poor public behavior be a teacher for the public
  • people with disabilities tell us that the R-word word causes us enormous suffering
  • language is living and we can grow and change
  • Rosa's law- what you call people effects how you treat them
Take a minute to watch this inspiring clip with the CEO of Special Olympics, Tim Shriver.

Down Syndrome Pregnancy

Down Syndrome Pregnancy provides a free downloadable practical guide for expectant moms, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome. They also host an interactive blog, which gives expectant parents a place to ask questions, voice concerns, and receive feedback. is a non-profit organization that offers support to expectant parents who have received a prenatal Down syndrome diagnosis and are moving forward with their pregnancy. 

About the Book
This publication goes beyond just being a very useful resource for couples; it also has a very human side that comes through openly and compassionately. This book points out many important thoughts that I express to my patients. First and foremost, what others think about a particular situation is not as important as what each individual couple believes and needs to worry about. There are resources available to reach out to for support, education, and information … The more information that a couple has, the better prepared they are to make it comfortable and enjoyable for their family. — Dr. Harish Sehdev
Reviewed by the following nationally recognized team of professionals:
Dr. Brian Skotko, MD, MPP, Clinical Genetics Fellow at the Children’s Hospital Boston and author of multiple books and articles about Down syndrome; Advisory Panel National Down Syndrome Congress (NDSC); National Down Syndrome Society (NDSS) Secretary; Chair of Massachusetts Down Syndrome Congress (MDSC).
Dr. Harish Sehdev, MD, perinatologist; Director, Prenatal Diagnosis Unit at Pennsylvania Hospital; Former Director of Labor and Delivery at Pennsylvania Hospital.
Dr. Joann Richichi, DO, OB/Gyn and author of 9 Months to Go: What You Need to Know.
Dr. Kan Hor, MD, cardiologist at Cincinnati Children’s Hospital, a leading facility in pediatric cardiology.
Dr. Sarah Riddle, MD, IBCLC, FAAP and Dr. Sheela Geraghty, MD. MS, IBCLC, FAAP, physicians at Cincinnati Children’s Hospital who specialize in breastfeeding.
Amy Allison, Executive Director of the Down Syndrome Guild of Greater Kansas City and Down Syndrome Affiliates in Action Board Member.
Mark Leach, Esq., Down Syndrome Affiliates in Action Informed Decision-Making Task Force Leader; Down Syndrome Affiliates in Action Board Member; Down Syndrome of Louisville Board Member. Father of Juliet, a little girl with Down syndrome.
Melissa “Missy” Kline SkavlemDown Syndrome Association of Greater Cincinnati Board Member; Board Moderator, Baby Center’s Down syndrome pregnancy on-line support board. Mother of Violette Skavlem, a little girl with Down syndrome.

Tuesday, April 12, 2011

Call Congress about the Budget Resolution

The House will vote on the Budget Resolution Thursday or Friday – Please call!
  1. Dial the Capitol Switchboard 1-888-245-0215 [toll-free] or 202-224-3121 and ask for the office of your Representative
  2. Ask to speak to the staff person working on budget issues
  3. Identify yourself as a constituent

Message to Representatives:

Please vote NO on the House Budget Committee's Budget Resolution.
It would slash Medicaid, Medicare, food stamps, education... in fact, all the investments that help Americans to be economically secure. People with disabilities disproportionately rely on government services to live, learn and work in their communities. These services assist many people with disabilities to live independently in the community avoiding costly institutional care and increasing the opportunities to work and pay taxes.

Click here to Take Action to find out the name of your Representative but please make a phone call for maximum impact!

The Consortium for Citizens with Disabilities is a coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.

IDEA National Survey of Experiences with Special Ed

The IDEA National Survey Project is sponsored by the National Center for Learning Disabilities (NCLD), National Down Syndrome Society (NDSS), Autism Society of America (ASA), Autism National Committee (AutCom), and The Advocacy Institute (AI).

The survey looks at whether parents are treated as equal partners in their children's education. Topics include whether the rights of students with disabilities and their parents protected throughout the special education process, including IEP meetings and IEP issues, eligibility (Child Find), Due Process hearings (impartial hearings), and other education issues. 

There are surveys for all community members:
  • Parents of children with disabilities
  • Self-advocates (people with disabilities)
  • Attorneys, advocates, and other professionals

The survey will run through May 2011.  The results will be compiled into a report about experiences under the IDEA that will be published this summer.

Sunday, April 10, 2011

UK plans for screening teenagers

From Topnews:

New official guidelines in the United Kingdom say that teenagers, around the age of 15 or 16, should be given a genetic test to see if they are carriers of incurable inherited conditions like Down’s syndrome or cystic fibrosis before they begin having sex or decide to settle down with a partner. The test could also be helpful for young couples wanting to have a child. If both parents test positive for the any of the conditions, their child has a 1 in 4 chance of developing it.

With this knowledge, parents will be able to make their own decisions of alternate child-bearing options. For example, they could adopt, use donated sperm, or use IFV, where they can disregard any “diseased embryos” through lab conception and testing.

Even though tests are not so easy to come across in the UK, many are in support of this. However, embryo rights groups like Comment on Reproductive Ethics say these tests could lead to more abortions because of their eugenic implications. For example, Josephine Quintavalle of Comment on Reproductive Ethics said, “The public always reads these reports in terms of wonderful new cures and that is very worrying. Killing the carrier of a genetic disease does not eradicate or cure the disease. It is simply a modern version of eugenics”.

A spokesman for the Department of Health said: 'Genetic screening can be a powerful diagnostic tool in assessing an individual's risk of conditions such as cystic fibrosis. 'But there are a number of considerations that are broader than the remit of this report which influence whether specific screening programmes should be established. 'The UK National Screening Committee will now consider the findings.'

Friday, April 8, 2011

Albert Pujols on 60 Minutes Sunday 4/10

His big bat has made the St. Louis Cardinals' slugger one of the top 10 players in baseball history. But to people with Down syndrome and the poor of his native Dominican Republic that he helps, he means a lot more than home runs and RBI. 60 Minutes' Bob Simon reports, Sunday, April 10, 7 p.m. ET/PT.

He is as dedicated to helping others as he is about playing ball, maybe more so. "It's my passion and I believe this is what God is calling me to do...I was one of those little boys with no hope."

His foundation also supports people with Down syndrome, another passion for Pujols, whose daughter was born with it.

For teenagers with Down syndrome, Pujols is already a hall of famer. Cameras capture him dancing with dozens of them at an annual prom he throws for the teens - the highlight of the year for them. "And for me too," says Pujols.

Tuesday, April 5, 2011

Post Secondary Grants

From the NDSS

The mission of the Joshua O’Neill and Zeshan Tabani Enrichment Fund is to offer financial assistance to young adults with Down syndrome who wish to continue to enrich their lives by enrolling in postsecondary programs or taking classes. The fund was established in January 2005 by Zeshan Tabani to honor his friend Joshua O’Neill. Joshua is an inspirational young man who happens to have Down syndrome. Joshua and Zeshan grew up in the same neighborhood in Fort WayneIndiana.
Joshua was fortunate to participate in a postsecondary education experience and he benefited greatly from this opportunity. Joshua now lives independently, with supports, in New HavenConnecticut. He works part-time and leads a productive and happy life. Zeshan was inspired by Joshua’s drive to enrich himself with postsecondary education and he wanted to help others who might not have the same opportunity.
As more individuals with Down syndrome are being included K-12 and graduating with their peers, the next step for many young adults with Down syndrome includes pursuing postsecondary education, which may include participation in a postsecondary program or simply taking enrichment courses. Financial aid is rarely available to these individuals.
The Joshua O'Neill and Zeshan Tabani Enrichment Fund seeks to offer financial assistance to young adults with Down syndrome who are 18 years old or older, who wish to continue to participate in postsecondary education programs or enrichment courses to gain employment and other important life skills contributing to their independence. Grants of up to $2,000 are available by completing an application. 

Interview with Chris Burke

View more videos at:

You know him best as Corky from Life Goes On, but actor Chris Burke has come a long way from the small screen. Now he's an ambassador for the National Down Syndrome Society and is urging folks to share their experiences with the My Great Story campaign.

Sunday, April 3, 2011

Music From The Heart

Darius Rucker and 25 participants in last year's ACM Lifting Lives Music Camp program will perform "Music From the Heart" during a special segment of the 46th annual Academy of Country Music Awards show taking place Sunday (April 3) in Las Vegas.

The music camp, one of the ACM's charitable endeavors, is attended by young people with developmental disabilities. The campers wrote the song last summer with songwriters Brett James and Chris YoungJulianne Hough will introduce the segment supporting Nashville's Vanderbilt Kennedy Center in its efforts to help make positive differences in the lives of families dealing with developmental disabilities. For the past six years, the center has hosted a music camp for people with Williams Syndrome, autism and other developmental disabilities.

Viewers may make a donation of their choice to the Vanderbilt Kennedy Center by dialing 1-888-9-LIFTING or make a $5 donation by texting DREAM to 27722. All proceeds will benefit the Vanderbilt Kennedy Center. CBS will broadcast the ACM Awards from the MGM Grand Hotel at 8 p.m. ET/PT.

Tim Shriver explains why the "R-word" is wrong

Shriver prefers the term "person with intellectual disabilities." This prompted Colbert, playing his obnoxious pundit character, to wonder why Shriver is trying to take away his right to say the word "retarded." Colbert admits he uses it to dehumanize those who are different from him.

But soon afterward, Shriver got serious: "You're allowed to be humiliating, degrading and hurtful. I'm allowed to petition you to at least recognize what you say and be aware of the option you have to stop."

He went on to raise people's understanding of social awareness.