Tuesday, May 31, 2011

$20 million to Improve Employment for People with Disabilities

US Labor Department Announces About $20 million to Fund State-Run Programs Aimed at Improving Employment Outcomes for People with Disabilities

The Department of Labor's (DOL's) Employment and Training Administration (ETA), in coordination with DOL's Office of Disability Employment Policy (ODEP) announces the availability of approximately $20 million for a second round of cooperative agreements to state agencies that administer the Workforce Investment Act (WIA). These funds provide an opportunity for states to develop and implement a plan for improving effective and meaningful participation of persons with disabilities in the workforce.

"Workers with disabilities suffer from one of the lowest employment rates of any group in the American population, even in times of prosperity," said Secretary of Labor Hilda L. Solis. "It is vital that state and local agencies work together with private sector partners to improve these statistics. Through this second round of funding, we are expanding the Disability Employment Initiative to include programs in additional states."

DOL is using this funding to implement the Disability Employment Initiative (DEI), through which the Department intends to make six to ten grant awards designed to:

  • Improve educational, training, and employment opportunities and outcomes of youth and adults with disabilities who are unemployed, underemployed, and/or receiving Social Security disability benefits;
  • Help these individuals with disabilities find a path into the middle class through exemplary and model service delivery by the public workforce system.
DOL will award DEI grants for a three-year period of performance. The complete SGA and any subsequent SGA amendments are described in further detail on federalregister.gov or dol.gov. The Web sites provide application information, eligibility requirements, review and selection procedures and other program requirements governing this solicitation.

Emergency Preparedness for People with special needs

Individuals and their families are urged to “resolve to be ready” this hurricane season. The Federal Emergency Management Agency’s (FEMA) Region 6 office has launched a new hurricane preparedness website to help you accomplish that goal. FEMA also has important information for people with disabilities about putting together an emergency kit and developing a plan so you are ready for any type of disaster or emergency.

Some strategies to consider:

  • Create a support network to help you plan for an emergency. Consider family, neighbors, friends, people who provide services to you, faith-based and community groups. Tell these people where you keep your emergency supplies. Give at least one member of your support network a key to your house or apartment

  • Keep contact information for local independent living centers and other disability services organizations in a safe and easy-to-access place. If you provide any organizations or service providers with information about your functional needs and what you may require in an emergency, keep that data up to date

  • Work with local transportation and disability services (e.g., Paratransit, Independent Living Centers) to plan ahead for accessible transportation if you may need that for evacuation or other reasons during a disaster

  • Copies of medical prescriptions, doctors orders, and the style and serial numbers of the support devices you use

  • Medical alert tags or bracelets or written descriptions of your disability and support needs, in case you are unable to describe the situation in an emergency

  • Even if you do not use a computer yourself, consider putting important information onto a portable thumb drive for easy transport in an evacuation

  • If you receive federal disability benefits, register your bank account information in advance with the U.S. Department of the Treasury online at http://www.godirect.org/ so you can continue to access your money during an emergency

  • see more strategies here

  • For information and tools related to emergency preparedness for people with disabilities see the FEMA Office of Disability Integration and Coordination webpage.

    Wednesday, May 25, 2011

    Not Acceptable (R-word PSA)

    Today, we are pleased to announce the release of a new hard-hitting public service announcement (PSA) called "Not Acceptable." This 30-second television PSA gives voice to a variety of diverse communities, each of whom expresses that it is not acceptable to call them by what were once common words, but are now recognized as offensive slurs. It culminates in actress and self-advocate Lauren Potter from “Glee” stating that it is not acceptable to use the word ‘retard.’ She and “Glee” co-star Jane Lynch make a call to action to stop using the R-word and to promote the acceptance and inclusion of people with intellectual and developmental disabilities.

    Tuesday, May 24, 2011

    Step Up for Down Syndrome TV Commercial

    from thepeoplestribune.com:

    Christine Guertzgen, 12, of Louisiana, recently shot a television commercial to raise awareness for  the “Step Up for Down Syndrome” fundraising walk to be held for the Down Syndrome Association of Greater St Louis (DSAGL).  Christine and several of her peers appear in the commercial that will air on all the major networks for the next few weeks. Hundreds of teams will join together to raise money and show support for individuals who have down syndrome at the June 5 walk in Forest Park.

    “Step up for Down Syndrome” is the major fundraising and awareness event for DSAGL. All funds raised support the programs and services provided for members and their families.
    Another fun event provided by DSAGSL is called the Walk at the Park where the top two fundraising team captains of  “Step Up for Down Syndrome” get to attend a Cardinals ballgame and throw out the first pitches.

    With the assistance of Pike County Agency for Developmental Disabilities, Christine has been able to attend some of the Association’s events.  Most recently she attended the “Lose the Training Wheels Bike Camp”  that the association put on in conjunction with the Pujols Family Foundation.

    Christine is certainly a very lucky girl to live in this community. The support of PCADD has been instrumental in Christine’s growth and development. This summer, with the help of the PCADD, Christine will be attending Camp Wonderland in the Lake of the Ozarks for a week on her own.

    Christine also has the most amazing administrators, teachers, staff, and classmates at the Louisiana Middle School. They have helped and supported Christine and have truly made her feel accepted. Christine even participated as an honorary cheerleader! The teaching staff and administration have done so much to include her and she couldn’t possibly thank them enough!

    Friday, May 20, 2011

    Miss You Can Do It Pageant

    The Annual Miss You Can Do It Pageant is a national non-profit pageant created just for girls and women with special needs and challenges and a whole new world that opens just one night a year. A world where wishing on stars and dreaming big is an every day event, and a world where everyone has an equal opportunity. It's a world where there are no need for special education classes because all you have to do is ask for help and you've got it, a world where every dream has the possibility of becoming a reality.

    The first pageant was in 2004, and those who witnessed the beginning could not have possibly anticipated the incredible growth the Miss You Can Do It Pageant has achieved. This competition puts its contestants on a memorable path, this experience leaves them with great memories, strong friendships, and a defining sense of accomplishment. This surreal night is a once in a lifetime experience!

    This pageant was created as a stepping stone for girls and women with special needs and challenges, so that they realize if you truly believe in yourself, ANY DREAM CAN COME TRUE! And they will leave this pageant with an abundance of self confidence that will live far past this magical evening.

    From missyoucandoit.com

    Thursday, May 19, 2011

    Student wtih Down syndrome's attempt to attend art class

    From therepublic.com:

    When Chapman University filmmaking student Ruby Stocking graduated from Ashland High School in 2008, she had never met Eliza Schaaf, a classmate with Down syndrome.

    Three years later, Schaaf's battle to attend a ceramics course at Ashland's Southern Oregon University became the topic of a documentary by Stocking and three other students at Chapman in Orange, Calif.

    "Originally, going into the project we were hoping to make a film about SOU and its impact on Eliza having been withdrawn from the ceramics course," Stocking said. "We just realized there was a greater story within the SOU clash with Eliza, that story being inclusion and whether or not someone who is disabled should be included in society or whether they should be separated."

    The documentary has been nominated for the university's Dodge College of Film and Media Arts Cecil Award for Best Documentary. It also will be entered into at least five film festivals.

    Last fall, Schaaf enrolled in a college-level ceramics class as a non-admitted student at SOU. Non-admitted students may enroll in up to eight credits of classes but don't earn credit toward a degree. Midway through, the SOU administration decided to drop Schaaf from the class.

    The university said Schaaf required excessive supervision and one-on-one attention that limited the instructor's ability to interact with the rest of the class. Schaaf's classmates signed a petition stating that Schaaf did not interfere with their ability to learn and asking that she be reinstated.

    Schaaf's family has appealed the decision to the Oregon University System, which so far has upheld it.

    Stocking heard about the story from a friend on Facebook around the time when she and classmates Bobby Moser, James Parker and Virginia Thomasi were looking for a topic on which to make a documentary for their Chapman class called Community Voices.

    The documentary project was expected to highlight a social justice issue for an Orange County organization. The Dhont Family Foundation funds the student-made documentaries each year.

    When the group contacted the Down Syndrome Association of Orange County, it learned the association already knew Schaaf's story, as it had gone viral among the Down syndrome community.

    For eight days in February and March, the four students filmed Schaaf working out at the Ashland Family YMCA, volunteering at the Ashland Emergency Food Bank and doing other daily activities. They also collected home videos of Schaaf and interviewed her, her family and classmates.

    "I thought the documentary would be a collection of activities and all the things Eliza can do and that it would downplay the SOU issue," said Deb Evans, Schaaf's mother. "They wove the story about her experience at SOU into a look at her life through her family and through who she is.

    "They presented Eliza's story in a way that opens a dialogue," Evans said. "I think they've done that brilliantly."

    From kindergarten until Nov. 8 when SOU dropped her from the ceramics class, Schaaf had been included in general education classes with her typically developed peers, Evans said. She earned a modified diploma from AHS last June and wanted to join her classmates in the next step, college, where she wanted to study art and photography.

    Stocking said she and her classmates traveled to Oregon three times for the filming. The time they spent together sealed a close friendship between Schaaf and Stocking, the filmmaker said.

    Stocking said she thinks SOU's decision to withdraw Schaaf was wrong, but she acknowledges some people might disagree.

    "I never thought about inclusion within the disabled population," Stocking said. "It caused me to examine myself and to examine others."

    The crew did not include SOU's perspective in the documentary, because they were denied an interview.

    Jim Beaver, a SOU spokesman, said he had not seen the documentary and could not comment on it.

    "We were approached by some people who wanted to make a documentary," Beaver said. "They asked to speak to the president and gave us some tentative dates, but she was not available. Even if she had been available, she couldn't have said anything" because of federal law that prohibits disclosing information about students without their permission, he said.

    iPad for kids with Down syndrome

    From wfmj.com:

    Marina Donadio isn't even in kindergarten yet, but the five-year-old is already learning to spell and read. Her mom, Kelly Donadio, says it's all because of apps on an iPad. "It's mind blowing to me that she's able to do that."

    And since children with Down Syndrome often face challenges with fine motor skills, the iPad's touch screen makes activities more accessible.

    Donadio says, "Holding a pencil is a chore sometimes for children with Down Syndrome because of the low tone in their hands. Eventually they do that, but this is a great way to help it not be such a challenge."

    Now, other children like Marina will have the same opportunities to improve their education and communication skills. Recently, the Down Syndrome Association of the Valley gave away 21 iPads to member families.

    DSAV Board Member, Chris Donadio says, "The iPad is a pretty big deal. It's being used in a lot of special education settings around the country, and right here in the Valley, we're on the cutting edge."
    Parents say they expect the teaching tool will be useful both at home and at school.

    The iPads were purchased with grant money from Ronald McDonald charities, as well as money raised from DSAV's annual Buddy Walk.

    Jane Lynch's comments on Glee's Funeral Episode

    From EW.com:

    Last night’s episode of Glee, fittingly titled “Funeral,” featured the shocking death of Sue Sylvester’s beloved sister Jean, played by actress Robin Trocki.

    EW managed to talk to star Jane Lynch yesterday at Fox’s upfronts and she admitted that the hour was a tough one to film. “People with down syndrome rarely last past 30,” says Lynch. “Robin is 55. So this really hit home. Her sister is there with her all the time, Sharon. They have a very tight relationship. So it was very bittersweet. The funeral was awful [to shoot] with the kid’s singing ‘Pure Imagination.’ It was really rough and I will miss her very much. I love working with Robin!”

    Co-creator/executive producer Ryan Murphy made sure Lynch was comfortable with the plot twist before moving forward with it. Says Lynch, “He took me aside at a party and said ‘I want your blessing on this before we move forward.’ I said, ‘It sounds like a really great storyline.’ It’s the thing that will break Sue Sylvester’s heart and get to where she lives.”

    Robin Trocki's Glee

    Her loving smile, warm heart and words of wisdom are shown on the FOX show GLEE.
    And the same rings true in real life. Robin Trocki plays Jean Sylvester on the show. She also has Down Syndrome.

    Recently she visited Lima with her sister to meet and greet some fans who can relate to her on a personal level. The actress came to Marimor Industries in Lima, OH to let everyone know she's on GLEE, but honestly, everyone already knew.

    "I love this," Trocki said. "This is fun. I love this." Trocki was in Lima, Ohio - ground zero for the FOX TV hit show GLEE, a familiar, exciting place.

    "To see what Robin has accomplished in her life is so inspiring, for all of us," said Esther Baldridge of Marimor Industries, a private, non-profit corporation which provides training and employment for people in Allen County with developmental disabilities. They took a break in their work day to welcome Robin and her sister, Sharon Miller. Many were even watching GLEE when she walked in the door. Trocki was in awe.

    "For me this has been an incredible experience," Miller said. "When Robin was born, in the 1950s, and at that time there was no thought that anything like this could ever happen, the doctors told my parents that she would never be able to learn anything, never really be able to do anything. Robin has spent her life proving those doctors wrong." Now she's an actress.

    Jean Sylvester on GLEE is one of the only people Sue Sylvester shows her soft side, and Trocki has much love for her costar. "Jane Lynch helps me with my lines," she said.

    Miller, her real-life sister, couldn't be more proud. "She has pretty much done everything she has set out to do," Miller said. "She's really someone who has followed her dreams, and worked hard."

    Monday, May 16, 2011

    A letter to my 5 year old daughter on her birthday

    A letter to my daughter, from Amy of particularlyperfect.com:
    Dear Kayla,
    How can I put into words the pure joy you have brought into my life over these past five years?  How could I ever tell you exactly what you mean to me and explain the incredible journey we have shared together?  My life has been magical since you were placed in my arms just five years ago today.  Just like the best scenes to my favorite movies, many memories we have shared play in my mind over and over with such clarity.  Like the day you were born…
    “She has the cutest little button nose”, Daddy exclaimed as he looked over the paper-like blue curtain that separated me from my future…my life as your Mommy.  As I lye there, nauseous, strapped to the operating table, I envisioned my daughter.  I envisioned you having my hair and Daddy’s eyes.  I was anxious.  I couldn’t wait to hold you in my arms…kissing you, telling you how very much I loved you and couldn’t wait to be your Mommy.  I couldn’t wait to hold my perfect little girl. 
    I was scheduled to have a c-section on Monday, May 15 {you were breech and weren’t budging so we were going to have to go after you}.  As with every other time in your five years, you had your own plans.  You wanted to make your arrival when you wanted…not when we planned for.  So during the night of Friday, May 12, I began feeling uncomfortable.  Thinking it was nothing more than horrible gas pains I went to bed and awoke early still feeling uncomfortable.  I was comforted that I wasn’t in labor, as I had just seen the doctor hours earlier who said I was not even close to going into labor and they would see me Monday morning.  My pregnancy began with cravings of jelly donuts.  Strange – I know…but that’s what I craved…that and corn dogs.  Let me say…I have never been a fan of either but my body needed them during my pregnancy.  The jelly donut craving subsided by my second trimester but for some reason the morning of May 13 I was jones-ing for a jelly donut.  I sent Daddy to Dunkin Donuts to buy you a jelly donut {because it was, of course, you that was craving the donut and Daddy would do anything for you…even then}.  By the time he returned {around 9am}, I was in labor with contractions that were 7 short minutes apart.  We placed a call to the doctor and made our way into the hospital.  Knowing I would need c-section and food is not recommended before surgery I was left craving that donut, smelling it…not tasting it {good thing I had you to look forward to or I would have been very grumpy}.  Once we made our way to the hospital, we made our phone calls to family and patiently waited for an operating room.
    I remember being afraid of surgery...of the operating room...but keeping a positive attitude, I joked with the nurses on my way in.  Staring at the ceiling from the stretcher, I said "so this is what the inside of an operating room looks like...nothing like it looks on TV".  That was the last piece of laughter that would exit my body for a few days...Everything was happening so quick around me.  I felt tugging and pulling and then was the moment that you entered the world...on May 13, 2006 at 3:29 in the afternoon.  As I lay there I caught a quick glimpse of your naked newborn body as they whisked you to the scale to perform your newborn testing… There was no crying.  I heard nothing and I panicked.  What is wrong?  Oh, God…please make everything ok…please…I would give anything for you to be ok.  Daddy sat next to me, stroking my shoulder and kissing my forehead.  I am sure he told me that he loved me and other sweet things, though I don’t remember the words.  While the next few moments are more vivid than any moments in my life, those moments leading up to the muttered words are gone.  I told Daddy to go be with you, comfort you and talk to you.  I watched him walk away from me, toward you.  I studied the excitement in his face.  I witnessed him fill with pride as he stood over you.  His face lit up like I had never seen before.  He was a Daddy…a very proud Daddy.  And while I wish that memory, that face was the one that was etched into my mind forever, it was the next face that I will never forget.  Daddy snapped pictures feverishly.  After taking at least a dozen pictures, he held the camera at his side.  Still beaming with pride, he looked on as the doctors were assessing you.  For some reason I couldn’t hear and yet you and the team of doctors that surrounded you were just 10 feet away.  Perhaps the doctors were whispering or perhaps my overwhelming emotions of being a new Mom caused me to temporarily lose my hearing.  Whatever the reason, I just couldn’t hear a thing.  As the doctor was busy stitching me up, tugging and pulling at my body, I laid there with my head turned to my left, staring at the backs of doctors in their blue scrubs, wanting so badly to see my daughter.  Wanting so badly to hold you in my arms.  And then I saw Daddy.  Standing proud as a peacock, shoulders back, smiling from ear to ear…and then…within seconds it seemed as if he lost all of the air in his body…his shoulders slumped, his smile was gone and he stood emotionless…staring…listening to the doctors.  I remember yelling out “what’s the matter?” and Rick came running to my side… “nothing”, he assured me, “nothing is wrong”…as you cried I told Daddy to go back to be with you and he did.  Still, staring blankly.  I knew something was wrong.  I knew that he was trying to protect me from something and I cried for him to come back.  I begged him to tell me what the doctors told him…and he whispered “everything is fine.  The doctors think she may have Down syndrome”.  I layed on that operating table, staring at the bright florescent lights and the white ceiling tiles.  I was helpless…unable to hold my baby and without ever seeing your beautiful face I was met with the words Down syndrome.  While it would be days later that I would find out what they said to Daddy, we will never forget those words…that moment when Daddy fell paralyzed with fear, breathless…that moment is the moment that the doctor said to him “I need to show you what is wrong with your daughter” as she proceeded to point out your simian crease on the palm of your hand, your beautiful almond shaped eyes and your flat nose bridge. Then she spoke those two little life-changing words…Down syndrome.  Surely someone in the medical field could have used better terms than “what is wrong with your daughter”…but she didn’t.  Pointing out what is wrong instead of congratulating a new father on the birth of his beautiful daughter. Allowing us time to enjoy our daughter before delivering us the suspected diagnosis.  Moments later they placed you in my arms and I knew.
    I saw your round face, your cute little button nose and those almond shaped eyes.  While they were filled with that post-birth goo, I looked into your eyes and I knew.  It was as if I was gifted that Mommy-instinct at that exact moment and in that moment, I knew you had Down syndrome.  As I held you tight and kissed you, I whispered I loved you but wondered if I truly ever could love you.  If I truly had the capacity to love someone that wasn’t “perfect”.  As tears rolled down my cheeks, I held you close and the world around me was blank.  I pressed your head into the crook of my neck as I lay my cheek upon your head.  I closed my eyes and felt as if I left my own body.  I could never explain that moment with the passion and feeling that surged through my body but it was raw and it was real and I felt it.  I felt my body empty.  My heart, my soul, my life and my world poured out of my body.  Within those moments I was rolled from the operating room to the post-op room.  Knowing that family was anxiously waiting downstairs for the call or visit from Daddy that I was ok and you had “ten fingers and ten toes”, he picked up the cell phone and called MomMom {at my request because I knew I couldn’t tell her the news}.  You were having difficulty maintaining your body temperature so the nurse placed you in a warmer next to me.  As Daddy spoke to MomMom, I stared over my right shoulder at you, my daughter, lying under a heat lamp like a chicken dinner.  I heard the casual back and forth of yes she is in recovery and doing well…he explained you looked just like a little loaf of bread...and then the pause…Daddy looked down at the tile floor, turned his back to me and muttered “they think she has Down syndrome”…and with that was silence for what seemed like an eternity.  I remember feeling bad.  Knowing all of the pain and hard times my Mom has endured over the years, knowing how much she was anticipating your arrival and knowing she would never expect this.  She would never expect this diagnosis.  In those moments, I re-played a conversation with her.  About 8 months pregnant, walking through the mall as we shopped for our most anticipated arrival {you}, we talked about the what-ifs in life and MomMom reassured me God would only grace us with a “perfect” child because he knew just how hard her life has been.  With that conversation rewinding and replaying through my mind in that recovery room, I felt shame.  I felt like I was letting her down.  There was more back and forth and then Daddy confirmed it was ok to come visit, two at a time.  When he hung up I braced myself.  I felt fear rush through my body.  I didn’t want my Mom, your MomMom, yet I needed her.  I needed her to heal my wound with a band-aid and a kiss.  I needed my Mommy to take away the pain.  The fear.  The sadness. I needed to hear her voice, reassuring me that everything would be ok.  Within seconds she entered the room with blood-shot eyes and a smile.  I know now that she cried in the waiting room for me.  She cried for my heartache and my fears because she knew you would be just fine.  And while she cried as she looked at you, they were the happiest tears I have ever seen.  Her pride, her love and her joy for you…for us…it was contagious.  And with that I felt a bit of fear leave my body.  Visitors came and went…and then it was just us…our family.  The nurse allowed Daddy to stay longer than visiting hours permitted, knowing the news of your expected diagnosis.  Knowing I probably needed him.  And I did.  While I don’t recall any of our conversation, I will never forget his actions.  I will never forget his instant love for you.
    It radiated through him and took over his soul; poured through his entire body and I could see it in his eyes.  You were his baby girl and he loved you and cared for you with every ounce of his being.  
    As your birthday ended, I remember pressing your naked body against my bare chest in the dark hours of the night.  Hearing monitors beeping in the hall and babies crying from other rooms, I held you tight.  I studied your face with your flawless milky skin, your brilliant sky blue almond-shaped eyes, your button nose and heart-shaped pinkest of pink lips.
    That image of you will live in my mind forever.  I will never forget holding you during those hours.  I will never forget those moments with you as we entered the early hours of my very first Mother’s Day.  I clutched you with every ounce of my being.  Tears rolling down my face and onto yours, I cried for you.  I cried for the you that I wanted you to be.  The “perfect” baby I needed and wanted.  And while I loved you, I was struggling with accepting you.  I wanted so badly to pick up the phone to call my friends.  I needed people by my side, yet couldn’t bare the thought of speaking those words…Down syndrome.  There was no doubt I wanted people to love you and accept you…but how could I expect people to accept you when I couldn’t accept the diagnosis that is part of you?
    Unfortunately, the feelings of despair, helplessness and sadness remained through most of our stay at the hospital.  The moments that we were alone were special but some of our visitors walked into the room, quiet, not making eye contact.  Instead of congratulations, I heard “how are you?”  And while they may have truly just been asking how I felt, I read into it.  Just as people ask “how are you doing” when you lose an uncle, spouse or child…to me, it seemed as if people were walking into a funeral instead of coming to visit a new baby.  And in those moments, I lost it.  While I don’t remember my exact demands, I know my yelling cleared the room.  I know that my sadness hit a point of no return and I needed people surrounding me to congratulate me and love you.  I needed for everything to be ok.  I needed for you to be perfect, just like everyone expected you to be.  The irony was while I saw that extra chromosome, most convinced me it couldn’t be.  Friends and family members convinced me you didn’t have Down syndrome.  Most family members looked at those characteristics the doctors pointed out and found those same characteristics in themselves. 
    While I didn’t want to envision people with Down syndrome that I have met or encountered in my life, I did.  While I didn’t want to put you in that “box”, I did.  And while I envisioned those people, visitors continued to assure me there was no way you had Down syndrome.  I am ashamed to admit that it felt good to hear “she doesn’t look like she has Down’s” or “she’s too pretty to have Down syndrome”…because what does that mean?  Kayla doesn't look like she has Down syndrome.  And neither do JJ, Nella, Victoria, Grace, River, Charlotte, Natalie, Brendan, Matt, or my many other friends.  They all look exactly the way they were meant to look...like their Moms and Dads, brothers and sisters and cousins.  And yes, while they do possess characteristics that resemble each other, they all look much more like their family than each other...than a "box" labeled Down syndrome.
    We didn’t receive the official diagnosis for three weeks.  That night as I was trying to process the news, I remember standing in the shower sobbing.  I remember the water hitting my back as tears fell down upon my feet.  Weak and helpless, I leaned my body against the cold tile wall.  I slowly slumped until I reached the shower floor.  I allowed myself that time to cry.  I allowed myself to release the pain, the loss that I was feeling.  That fear of will you walk, talk, have friends, go to prom, drive, get married, have a career…those fears filled my mind and tears filled my eyes, ache filled my heart.  The shower became that place for me…that place of safety where I could cry and release my anger and my sadness.
    All of those moments of fear…the moment that Daddy was delivered the news that you “weren’t perfect”…the moment that family members came in to visit you in the hospital with tears and fear in their eyes…and those moments when I tried to wish away Down syndrome…they were all because of the unknown.  None of us understood.  None of us could even imagine the amazingly beautiful, intelligent, kind and loving five-year-old little girl that you are today.  None of us imagined your abilities in those moments of fear.  In those moments I saw disabilities.  I saw differences.
    While I loved you and photographed every bit of you...every face, every outfit, everyday…I lived with fear.  I lived with the what-ifs and the whens?  What if this happens and when will this happen?  And as you hit milestones those fears started to slowly fade.  One day while sharing my fears about your future with a friend, clarity hit me like a ton of bricks…that clarity is this…no mom knows who their child will grow up to be.  No mom knows when their child will walk or talk.  No mom knows if their child will go to prom or college or get married…and as moms, we can just hope for a bright future as we set our children up for success.  Since that day, since that moment, I have looked forward.  I have hoped forward.  I have worked and pushed and fought for you.  I have loved you fully for who you are.  And while I have moments and even days of worry, I know those worries are the same worries that every Mommy has.
    If only everyone could have seen you then as you are today...we all would have seen you just as you are, just as you were meant to be… perfect.
    For you are more loving than any five year old I know.  You are kind, caring, have impeccable manners, love unconditionally and live fully.  You are beyond perfection.  Your joy is infectious…your laughter contagious and your desire to learn is admirable.  While we have been on this journey together, I promise you that I have learned more from you in these past five years than you will ever from me.  Together, we have been an inseparable team…a force.  We have been breaking down stereotypes, discouraging the use of hateful words…living fully and loving unconditionally each and everyday.
    I am changed.  I am better.  Because of you.  Each moment and each day that passes is better than the one before…and while some days may not be easy, each day is filled with life and love and laughter.  Each day that is filled with time spent with you is the greatest gift I could wish for.  I know that time is passing fast but I am trying to hang on…trying to enjoy each moment of this sweet ride.  This roller coaster ride of life of ups and downs and twists and turns is just that…a ride.  We’re hanging on when we are filled with fear and letting go when we are brave.  There have been many moments when I clutched that safety bar until my knuckles turned white…moments of fear when I wanted to apply the breaks…but just when I think I can’t take it any longer, I think of you…I look at you…and I smile…and each moment of pain, bit of fear, worry of milestones, and thought of “special needs” disappears.  And while those darker days are what make today brighter…they seem so far in the past.  I no longer think of Down syndrome on a daily basis.  I no longer think of “special needs”.  I think of you.  Yes…Down syndrome is a part of you…but that extra magical chromosome that makes you who you are, I no longer fear that chromosome.  I am proud of that chromosome and I am proud of you.
    Five years has brought love, acceptance, courage and new friends into our lives.  No matter where we go, people know you…they know you by name.  You enter restaurants and are greeted with a loud, cheerful, “KAYLA”!  Some don’t know my name…but they know you.  In Rehoboth Beach where we do the Boardwalk Buddy Walk, vendors around town…like Ryan’s Surf Shop and the Christmas Shop welcome you with hugs and love {and usually a little gift}.  The staff at the Cheesecake Factory know and love you and are excited every time we eat there.  People have changed their majors to Special Education because of you.  People have stopped using the R-word because of you.  People have become more understanding and accepting because of you…and I am one of those people.  While you may not be who I thought you would be, you have turned me into the person I am supposed to be.  Thank you, Kayla, for all that you bring into my life.
    You bring opportunities that I never imagined possible the first time I held you in my arms.  Life-long friendships have been made because of you.  Hearts melt with every smile and opinions change with every “hi, I’m Kayla…what’s your name?” {in your cutest voice}.
    Those that met you with fear are now believers.  They are filled with love and hope for your future.  Those that did not understand Down syndrome now understand.  We all understand that while you have Down syndrome, it does not define who you are or who you will grow up to be. 
    While some of our first moments together have faded, the guilt of not accepting you fully from the beginning is real and powerful.  I feel it from the core of my soul.  For as long as I remember those moments, for as long as I breathe, I promise you this…
    I will never treat you different, expect less of you or stop pushing you to try harder. I will never allow anyone to disrespect you. 
    I will always encourage you, respect you, be your biggest fan, your advocate and your supporter.  I will always hope for a brighter, more accepting tomorrow.  But above all, I will always love you for who you are...my beautiful, amazing, intelligent, fun-loving daughter with designer genes.  And you are rockin’ those genes. 
    Happy 5th Birthday, Kayla!  Our five-year journey has been filled with the most incredible memories…
    some of the most amazing moments of my life and I look forward to each and every moment in our future.  You are exactly who you were meant to be and I have no doubt you will make the most incredible impact in the lives of many.  Shine bright, little star.  Shine bright.
    You will always be my perfect princess.

    Poet, Self Advocate: Julie Yeager

    Julie's Poem
    I think of birds growing. I think of rainbows after a good wet cry. When the sun finally decides to come out from under a pile of gray socks, nothing really matters. A sip of your milk and a thought comes to mind. A blink a stare and emotion closing your eyes to stop the world dreams come true when your spirit becomes a simple act of kindness: Lights beyond the stars in the sky bring me hope and luck for what I know that is true something I believe in is why I stand up to show that it is important to be heard. My poetry does not always need a theme or rhyme It requires a person who knows God’s grace and true meaning of souls connection to each other. A walk and a new poem comes to mind about the birds and the bees but as you know I know about the moon and stars shining over me. Do you know about everything I do I check out a shake or two when you come around. I know you drive me crazy Every day at work I try as hard as I can just ring up my number and I hear a voice I try to avoid it I talked to friends and now I wanna find angels singing I am waiting for my life to be shared and now it is complete. I started with birds growing and rainbows now I am ending with sunlight and smiles to be everywhere in your heart and by your side all day long.
    Julie Yeager graduated in 2006. At the time, she was the first student in Sonoma County's Full Inclusion program to complete 12 years of education in the program at public schools.
    Yeager was born with Down syndrome, but that didn't stop her from attending Cherry Valley School and moving on through Petaluma Junior High and Petaluma High.
    She graduated with the rest of her class from Petaluma, receiving a certificate of completion in lieu of a diploma.
    Despite a recent health setback that has put her in the hospital for several weeks battling a lung infection, Yeager is doing what all graduates aspire to do — living independently and working at a productive job.
    “We're proud of her,” says her mother, Gail Yeager. “She has her own apartment and is a regular member of the westside community.”
    What makes her even more special is her talent. Yeager is a prolific poet.
    Her poems are free verse, but what they lack in appropriate punctuation, they more than make it for in heartfelt emotion.
    “The poems are written in prose style. She puts her feelings out there,” explains her mother.

    Prom King and Queen, and they happen to have Down syndrome

    From azcentral.com:

    From AZ C"I imagined that she would be snubbed and made fun of and not be given opportunities," Mary Alten said. "I imagined that every day at school would be a struggle for her."
    Instead, something wonderful happened.
    Toni, now a senior at Loveland High, was crowned queen at Loveland's prom April 30. And her friend, Drew Anderson, also a senior with Down syndrome, was crowned king by their classmates.
    As students cheered and placed a plush crown on Drew's head and a jeweled tiara on Toni's, Mary Alten clapped and cried.
    "It really hit me at prom that night: What I had imagined for her turned out to be the exact opposite," she said. "That she would be so well-known and well-liked and accepted at school -- that was a pretty huge thing for us."
    On prom night, when the royal winners were announced, the instant cheers, claps and smiles were universal and genuine.
    "No one was upset; everyone was excited about the result," said Lauren Tipton, a senior who has known Drew since second grade. "Usually people are catty if they don't win. Usually they just vote for their friends. Drew and Tony are friends with everybody."
    When Toni heard his name, he smiled and waved a peace sign to the crowd. "Everybody was happy," Drew said later.
    When it was time, Drew and Toni clasped hands and danced in the spotlight to a Taylor Swift song. After a few moments, their classmates joined them.
    Later they posed for pictures. Drew held up his hands up in a victory pose and Toni hoisted her bouquet over her head. There were high-fives and hugs, and some classmates and parents wiped tears from their eyes.
    Two weeks later, Drew and Toni can still be seen sporting their crowns on the bus or at school. "I am the queen and Drew, he's my friend," Toni said. "I'm lovin' high school."

    Austin and Christi's married life together

    Many of you know about Austing Davenport and Christi Hockel, and this is great way to hear more about their marriage story and their life together with its challenges and triumphs.

    That winter evening in Dallas, as Austin walked up the steps, Christi stepped forward to meet him.
    “Hi, honey,” she said, her arms circling his waist.
    Inside, Austin took off his tie, and Christi carried the hot dogs to the table. They began to eat and talked about their plans for the evening — grocery shopping with the neighbors, then finishing Salt , the Angelina Jolie spy thriller.
    Later, Christi put on her nightgown, and Austin wore his flannel pajama pants. Then they climbed into bed and said goodnight.
    And there, beneath the glow-in-the-dark stars, they fell asleep together.

    Tuesday, May 10, 2011

    Amiee Richardson stars as Punky in a new cartoon

    From Irish Independent:

    RTÉjr has just made history by broadcasting the world's first ever animated cartoon featuring a lead character with a disability.

    Punky, produced by Monster Animation, tells the everyday adventures of a cute six-year-old girl who has Down Syndrome. The series is set to go global; negotiations with TV networks in the UK, Australia and Sweden are at an advanced stage, and it's hoped Punky will attract more buyers at the international TV market in Cannes next October.

    The character of Punky is voiced by Aimée Richardson, a 29-year-old Dublin woman who has Down Syndrome.

    Aimée is my cousin, six years my junior, and famous in our family long before her voiceover début with RTÉ. At the series launch in the Mansion House last week, Aimée said she hoped children of all ages might learn something from Punky about what it's like to have a disability and that it's not, as she put it, "all bad".

    My cousin is one of about 5,000 people in Ireland with Down Syndrome, the genetic disorder that is a result of a child being born with an extra chromosome. It affects physical and mental development, and can be linked to a range of conditions including slow learning, congenital heart defects, digestive problems, weak muscle tone, eyesight and hearing difficulties.

    Aimée was born with a hole in her heart, and had to undergo major valve surgery at the age of two. Before the operation, her parents were warned that she had a 50/50 chance of survival. She made it.
    She also made it through full-time education in primary and secondary mainstream schools, becoming one of the first special-needs students in the country to sit her Leaving Cert Applied exams. School was tough. At home, Aimée was bathed in love and encouragement, her musical talent was nurtured, and she blossomed into a bright, affectionate child and young adult.

    The outside world is not so kind. Children are painfully aware of being left out, and Aimée felt it keenly when she didn't get the calls and texts from the other kids to come and hang out at weekends or in the evenings after school.

    Children were friendly and polite, but distant. She was frozen out. But what was remarkable was that Aimée was never resentful. She understood that they were teenagers too.

    Aimée has no shortage of friends now, but she told me recently that looking back on her school days, it was "a bit of a challenge" for her to mix with people in a mainstream school who didn't have disabilities. But she added, "I can imagine it was a challenge for them as well, trying to mix with someone with a disability."
    She persevered. In her twenties, Aimée completed a FETAC Level 5 course in childcare and worked with children over a two-year period at a pre-school centre.

    A clear and considered speaker, she became an advocate for Down Syndrome Ireland and a member of their National Advisory Committee, helping to develop anti-bullying campaigns and generate political debate on disability issues before the recent election.

    Aimée is currently recording an Irish-language version of Punky, and is practising her Irish at every opportunity, silently reading the bilingual signs on the DART and the Luas whenever she travels.
    And yet, as she told me, discrimination can happen anywhere, at any time. Strangers sometimes stare, or avoid her gaze. "I certainly don't like being stared at," she said. "In the awareness campaigns with Down Syndrome Ireland, we're trying to put across the idea that, okay, we have a disability, but we're not stupid."
    Aimée is the first person with special needs to be represented on the European Disability Forum, and has at least a dozen TV, radio and newspaper interviews under her belt. She made an off-the-cuff speech at the Mansion House last week which had her audience smiling through their tears.

    Thanking her parents and colleagues, she described how she hopes the character will grow up so that people can understand more about having a disability when you're older.

    Punky is being widely hailed as a role model for children with special needs. That she has Down Syndrome is mentioned in the opening credits, but thereafter she is just a fun-loving little girl who lives with her mum, her granny, her big brother, and makes sense of the world in her own way.

    Punky is a character. Aimée Richardson is a real-life ambassador, but it is her humanity, not her disability, which make her special.

    Her gentle ways have taught me a lot about acceptance, love, bravery and forgiveness. Punky is just as certain to win a worldwide army of fans, not for her cute haircut or her sense of mischief, but for her lion-hearted humanity in which we all claim a share, regardless of age or ability.

    Sunday, May 8, 2011

    Drug treatment for people with intellectual disabilities

    From the Los Angeles Times:

    Slouched sideways at his desk in the front row of class, a sneakered foot jittering distractedly, Chase Brown could be any 14-year-old in academic captivity.

    As the discussion turns to the American history of slavery, the teacher draws Chase back from his apparent reverie. A classmate has said that Abraham Lincoln freed the slaves. Does Chase agree or disagree?

    Chase locks eyes with his teacher. "I agree," he says emphatically.

    It is a moment of triumph for Chase, one of an estimated 90,000 in the U.S. who live with an inherited form of intellectual disability known as fragile X syndrome. Only a year ago, he would have fled the classroom, thrown something at the teacher or stayed mute. Last year, he tested below first-grade level in all academic domains.

    Impulsive, distracted and quick to boil over, he seemed incapable of learning.

    This year, he can sit in a classroom for half an hour before needing a "sensory break": a walk around the parking lot to clear his overstimulated brain. He is reading at a fourth-grade level, following class discussions, looking teachers squarely in the eyes and answering questions.

    On a surprising drug — a workhorse antibiotic used since the 1960s to treat acne, skin infections, strep throat and chlamydia — Chase is learning.

    Minocycline, the medication Chase has been taking for almost eight months, is one of several drugs that might correct — even reverse — many of the brain perturbations of fragile X and several other developmental disorders, including autism.

    The medications are still far from proven: Large-scale trials may take several years to complete. But if they live up to their promise without dangerous side effects, they could accomplish what no medication has been able to: cure a genetically based intellectual disability.

    Last year, Chase was among the first 50 children and adults with fragile X to take the drug as an experimental treatment. Since then, said his mother, Heather Brown, he has changed in ways she hadn't thought possible.

    He has developed the ability to chat: share details of his day, make thoughtful observations and inquiries, and respond with apparent understanding, even empathy.

    His explosions of kicking, hitting and object hurling, and the terrible remorse that followed, have vanished.

    It's not sedation: She saw that before when Chase cycled through a list of powerful antipsychotic medications. He seems instead to be learning new ways to behave.

    "It's life-changing, it really is," said Brown, who lives in Mission Viejo with Chase and his stepfather. "I was, like, 'Minocycline? They use that for acne.'"

    The condition that Chase was born with is caused by an abnormal elongation of a portion of DNA on the X chromosome. It is the most common inherited intellectual disability worldwide, affecting about 1 in 4,000 babies. It causes some cases of autism. Depending on the extent of the error, a child with fragile X can range from nonverbal to having communications skills that are mildly impaired. Epilepsy is common. Short-term memory deficits and very short attention spans can short-circuit academic progress.

    It can seem like a train wreck of conditions — autism, attention deficit, bipolar disorder, anxiety and more — rolled into a single kid.

    Yet now there's some genuine muscle pulling on the hope side of the equation, thanks to a confluence of parental activism, advances in brain science and luck.

    "People haven't thought about what it would be like to reverse intellectual disability or mental retardation," says Dr. Randi Hagerman, medical director of UC Davis' MIND Institute, who ran the minocycline study in which Chase was enrolled. "We now think it may be possible."

    It's a goal as controversial as it is ambitious. For decades, activists and parents championed inclusion for those with what was until recently called "mental retardation" (the preferred term now is "intellectual disability" or "developmental disability").

    Somewhere along the way, many came to reject the idea that a "cure" was needed, or desirable. To suggest that intellectual disability is an illness crying out for a fix devalues and stigmatizes these children, they contended.

    Advances in biomedical research have already begun putting that conviction to the test for families of those with Down syndrome.

    In 2009, researchers at Stanford University School of Medicine and Packard Children's Hospital announced "a ray of hope" for those born with the condition. Working with mice bred to have the equivalent genetic error, they identified a faulty brain mechanism that disrupts the laying down of certain memories and, in turn, learning.

    They also found that a readily available drug cocktail that boosts the brain chemical norepinephrine could compensate for the problem, enabling the mice to learn normally. With early use, the scientists suggested, such a drug might put a child born with Down syndrome on a normal cognitive trajectory.

    Not all parents hailed this "ray of hope." Reacting to the news on a blog called Contrarian, Jenn Power, a Canadian mother of twin boys with Down syndrome, echoed the views of many who have been active in promoting the rights of those with intellectual disabilities.

    "They do not need a needle in their brain to make them more functional, to help them find their car keys," she wrote. "What they need is a society that values what they have to offer."

    After physicians recognized in Chase the classic profile of a fragile X child five years ago, he was treated with psychiatric medications, with limited results.

    When puberty set in, his anxiety, aggression and repetitive behaviors escalated dramatically — along with his size and strength.

    Heather Brown, a 38-year-old office manager for an electric contracting company, worried for his safety — and sometimes her own.

    "I was dealing with hitting and kicking and throwing stuff," she said.

    By then, she and her ex-husband, Chris, who lives in Carlsbad, had met UC Davis' Hagerman, who urged them to consider participation in her minocycline study. It went on to show that 70% of those with fragile X responded with significant improvement in language, behavior and cognitive function.

    Minocycline's effectiveness in these early trials appears to be due to its suppression of a protein called MMP-9, which is overproduced in fragile X brains, derailing normal neural development. The antibiotic also tamps down inflammation in the brain. Both effects, amazingly, are incidental to the drug's antibiotic powers.

    The drug's principal side effect in the studies is a graying of the teeth. A small number of patients developed blood signs suggestive of autoimmune inflammation, albeit with no associated symptoms.

    Beyond minocycline, early trials are underway for three medications that inhibit a second protein that is overactive in fragile X brains and for a fourth drug, arbaclofen, that acts on yet another brain chemical. Arbaclofen appears from early drug-trial results to reduce the hyperactivity and hypersensitivity that are hallmarks of fragile X, and may help children with autism unrelated to fragile X.

    Mark Bear, a neuroscientist at MIT's Picower Institute, says there's universal agreement that such drugs should produce the most dramatic changes in young children. But conducting early trials on very young children raises ethical and safety concerns, so they will focus on adults with fragile X for now.

    Though this may limit the findings, "we have our fingers crossed that we'll still see substantial benefit," Bear said.

    Many of the drugs considered promising for fragile X also have excited interest as treatments for a wider range of neurological conditions — stroke, spinal cord injury, multiple sclerosis, autism and Alzheimer's disease — a fact that will probably speed their path to market.

    Chase, in the meantime, will continue to take minocycline, now prescribed off-label by Hagerman because the trial in which he participated is over.

    "I'm sure people thought he might be a lost cause," his mother said of his situation before his treatment began. "I did wonder myself."

    She said she didn't know what to make of today's talk of potential "cures." But now she sees a future in which her son might navigate the adult world — complete high school, have a job, an apartment, a girlfriend — with just a little help from family and social services.

    "I'm definitely thinking differently," she said. "He's on a good path."

    Prenatal diagnosis booklets distributed to 10,000 professionals

    From pr.com:

    Lettercase (www.lettercase.org) is pleased to announce that its booklets, "Understanding a Down Syndrome Diagnosis," have been distributed to medical providers nationwide in the largest ever Down syndrome prenatal outreach effort. However, this accomplishment is just the beginning. Additional funding is critical to make booklets available to the more than 60,000 professionals who could be sharing the unexpected and often overwhelming news with expectant parents.

    The National Down Syndrome Society (NDSS) and the Kennedy Foundation generously funded the 10,000 booklet distribution for a prenatal outreach effort that Lettercase arranged with the National Society of Genetic Counselors (NSGC), the American College of Medical Genetics (ACMG), graduate programs, and the American College of Obstetricians and Gynecologists (ACOG), but there remain tens of thousands more medical professionals who could benefit from this important resource.

    Last week, Gene Security Network announced a 2 million dollar grant from the National Institutes of Health (NIH) to conduct a clinical trial for non-invasive prenatal diagnosis (NIPD); however, the Prenatally and Postnatally Diagnosed Awareness Act that passed unanimously in 2008 to provide information about conditions, like Down syndrome, has gone unfunded for the past three years. One testing company has already announced more advanced prenatal blood tests for Down syndrome to be released this fall, meaning more accurate testing will be available without the accompanying information needed to support the patients.

    Lettercase CEO, Stephanie Meredith, says, "Our booklets give patients the full scope of Down syndrome with information that has been vetted by both medical and disability experts. It is essential for both the federal government and testing companies who are putting funds toward testing to also invest in credible patient education. It is essential that we establish a model, not only in theory but in practice, for responsible testing as this technology continues to evolve for more and more genetic conditions."

    According to Madeleine Will, Director of the NDSS Policy Center in Washington D.C., "current prenatal testing was developed with a 13 million dollar NIH grant in the 1990's; now NIH has granted 2 more million dollars for the next wave of prenatal testing. Yet there has been no matching funding to provide the accurate, up-to date, detailed information about life with Down syndrome that professional recommendations require when delivering a diagnosis. The Lettercase booklets provide that required information about Down syndrome. It is incumbent upon those who fund prenatal testing to also provide funding for this vitally essential educational information; otherwise, prenatal testing does not result in informed decisions but can, and often does, result in discrimination against those with the tested-for condition."

    About Lettercase
    Lettercase is a Georgia non-profit corporation that provides reliable and up-to-date resources and information about genetic conditions, as well as professional and academic training about disabilities. Lettercase can make experts available for interview.

    Unemployment rate for Americans with disabilities

    From www.disabilityscoop.com:

    For the first time in three months, the unemployment rate for Americans with disabilities eased somewhat in April. The Department of Labor said Friday that unemployment fell to 14.5 percent for those with disabilities in April, down from 15.6 percent the previous month.
    However, the change could be due at least in part to fewer people with special needs seeking work.

    Meanwhile, the general population continued to fare significantly better than those with disabilities as the economy added 244,000 jobs. Unemployment for that group rested at 9 percent for the month.

    The Department of Labor began tracking employment among people with disabilities in October 2008. There is not yet enough data compiled to establish seasonal trends among this population, so statistics for this group are not seasonally adjusted.

    Data on people with disabilities covers those over the age of 16 who do not live in institutions. The first employment report specific to this population was made available in February 2009. Now, reports are released monthly.

    Saturday, May 7, 2011

    Advocacy for visual learners

    It’s been a bad day for 6-year-old Maddie Gillespie if she comes home from school with just one sticker.

    Every time she accomplishes an assigned task, her teacher places a star on a sticker board.

    “My child learns from more visual cues versus just being told and given a directive,” said Randi Gillespie, her mom and family coordinator for the National Association for Down Syndrome. “If she comes home with a whole panel full of stickers, she knows it’s been a good day.”
    But her daughter’s needs as a visual learner weren’t always met.

    Maddie Gillespie was born with Down syndrome –– a genetic disorder described by the Mayo Clinic as one that causes lifelong mental retardation, developmental delays and one that varies in severity –– which, before moving schools, led some special education teachers to treat her the same as any other child with the disorder.

    “Just because my kid has Down syndrome, and the kid next to her has Down syndrome and they look the same, doesn’t mean they learn the same. All children learn completely different,” she said.

    Until the year 2000, researchers within the field of developmental sciences told educators to take a homogenous, “one size fits all” approach to teaching those with intellectual disabilities, said Deborah Fidler, a researcher in the Department of Human Development and Family Studies at CSU.

    But she, alongside fellow researcher Lisa Daunhauer, recently received an $800,000 grant from a branch of the Department of Education to study how individuals with Down syndrome are predisposed to unique learning styles based on other genetic factors. Those with Williams or Fragile X syndrome, for example, predisposes children to very distinct areas of learning.

    “In the world of developmental science, we’ve appreciated these developmental differences over a decade or two. We’re moving beyond a one-size-fits-all approach and toward a more tailored approach to special education,” she said. “That way, we can get much more innovative about teaching them.”

    The duo applied for the grant in June of 2010 and survived a hypercompetitive application process to receive the funding in April of 2011. A panel of 20 experts in the field of developmental science reviewed Filder and Daunhauer’s proposal alongside stacks of competing applications and agreed their suggested study would best further public knowledge of Down syndrome.

    The funding will be used to bring families in for lab visits and administer play-based tasks that will measure this cognitive domain of executive function, Daunhauer said. The money will also be used to gather information from parents and teachers, “So we can see a full picture of what these skills look like … and how these skills are being used.”

    “As we get outcomes, we’ll be sharing them in peer review journals, conference presentations,” she added. “We’ve definitely offered our services informally as well.”

    News of research explaining diversity in learning styles among children with Down syndrome is welcome to Gillespie, whose experience with special educators has left her questioning their expertise in the field of developmental science.

    “In general, across the board, they just don’t have up-to-date and accurate information,” she said. “And from a parent point of view, it’s very frustrating.”

    Wednesday, May 4, 2011

    Preschool for Children with Down Syndrome Bombed

    From Reuters:

    Shattered glass litters the carpet at the Libyan Down Syndrome Society, and dust covers pictures of grinning children that adorn the hallway, thrown into darkness by a NATO strike early on Saturday.

    It was unclear what the target of the strike was, though Libyan officials said it was Muammar Gaddafi himself, who was giving a live television address at the time.

    "They maybe wanted to hit the television. This is a non-military, non-governmental building," said Mohammed al-Mehdi, head of the civil societies council, which licenses and oversees civil groups in Libya.

    The missile completely destroyed an adjoining office in the compound that houses the government's commission for children.

    The force of the blast blew in windows and doors in the parent-funded school for children with Down syndrome and officials said it damaged an orphanage on the floor above.

    "I felt sad really. I kept thinking, what are we going to do with these children?" said Ismail Seddigh, who set up the school 17 years ago after his own daughter was born with Down syndrome.

    "This is not the place we left on Thursday afternoon."

    There were no children at the school when the missiles hit early on Saturday morning, since Friday begins the weekend in Libya. Children had been due to come in on Saturday morning

    A mound of rubble was all that remained of one wing of the main building that adjoined the school, though an antenna of some kind protruded from the ruins.

    Both Mehdi and Seddigh said they had assumed that the antenna on the building was there to strengthen mobile phone signals and were not aware of any other use.

    In the rubble of the main building, a shredding machine packed with sliced up documents lay on its side. A fax and phone were nearby and shelves of files could be seen.

    The Libyan government has repeatedly said that NATO airstrikes have hurt and killed civilians but has not responded to requests by journalists to visit the hospitals, making it tough to verify casualty figures.

    NATO has hit inside or near Gaddafi's compound before, or struck military or logisitical sites. Saturday's government-organised visit was the first to bring journalists -- whom government minders watch closely -- to a civilian site.

    Inside the school, the power had been knocked out by the strikes, the floor was wet because of a leaking pipe and desks were covered in glass and debris.

    Seddigh's school prepared children with Down syndrome up to the age of 6 to go to normal schools, giving them speech therapy, handicrafts and sports sessions and teaching them to read and write. It handles 50 to 60 children a day.

    Sunday, May 1, 2011

    Buddy Cruise "The Soul Know No Bounds" Winner

    The Soul Knows No Bounds Winner: Bradford Hennefer!

    Brad Hennefer is living proof that society's "boundaries" can't hold him back. He is the first person with Down syndrome to play on two high school varsity sports--golf and basketball. He is also the inspiration for the "Brad Hennefer Golf for Life Foundation" which provides golf opportunities for indivdiuals with Down syndrome.

    Brad was a keynote speaker at the NDSC 2006 conference and continues to conduct workshops for the NDSC each year. He was featured in the national media on Good Morning America, Sports Illustrated, New York Times and all three major TV networks. Brad also has stories published about him in "Chicken Soup for the Soul Inside Basketball" and "Gifts 2."

    Brad holds two jobs--one for Wegmans, which is ranked by Formes Magazine as the 2nd best employer in the U.S., and the other job is with Aramark. His heart and "soul" are truly an inspiration to those who hear him speak as he shares is message that "While the Destination is Important, the Journey is the Ultimate Reward." It would be an honor for Brad to share his journey on the Buddy Cruise.

    For further information, just google "Brad Hennefer" or refer to Golf for Life.

    YOU can meet "Soul Knows No Bounds Self-Advocate" Brad Hennefer, October 16-23, on board Buddy Cruise 2011 where he will share his incredible journey.

    Call 1-877-BDY-CRUZ #3 to reserve your cabin.
    Purchase your very own Soul Knows No Bounds shirt at our shop.