28-May-2008 Enewsletter

 
 

 

 

Upcoming Events

 

  1. Sibling Groups for the summer

    Sat June 14, July 12, August 9

    Meet other kids with brothers and   sisters with special needs…

    Share thoughts and feelings…

     Young children group for children 4-6

    Time:   2nd Saturday of every month

                  From 8:45-10:00 AM.

    Ongoing group for children 7-12

    Time:   2nd Saturday of every month

                  From 10:00-11:30 AM.

    Place:   987 Old Eagle School Road (K door)

                 Wayne , PA 19087 .

    Cost:    $35.00 per session

    Group facilitators: Dale Fisher, LC SW and Deirdre Miller, MA

    Call Dale Fisher at 610-668-8890/610-547-6947 or email dalefish2000@aol.com to reserve a space.

     

  2. Special Needs Cheerleading
    WHO: Girls and boys with intellectual disabilities who are physically
     functional and between the ages of 8 and 17 years of age
    WHAT: Special needs cheerleading team
    WHERE: Liberty Cheer Institute (LCI) at the Marple Sports Arena; 611
     South Park Way, Broomall, PA
    WHEN: Open sign-ups will be held on Sunday, June 8, 22, and 29 from
     1:00pm to 2:30pm
    WHY: Benefits of cheerleading include, improved strength and endurance,
     weight control, how to focus and take instruction,
     self-esteem/confidence, sense of belonging, and lasting friendships.
    * This program will be a pilot study conducted for a Master’s Thesis
     project by Amanda Kingsland, an occupational therapy student at Thomas
     Jefferson University. 
    * To become more familiar with special needs cheerleading teams refer
     to www.usasf.net this is the U.S. All Star Federation, who created a
     Special Needs Committee. 
    * Check out liberty Institute’s website for additional information
     about this particular program www.libertycheerinstitute.com 
    For more information contact:
    Amanda M. Kingsland, OTS
    610-405-8457
    Amanda.kingsland@jefferson.edu (preferred)

     

     
  3. Aquatic Therapy Group: For children with Down syndrome
    Who: Children ages 6-8 years old. 
    When: There will be an initial land-based occupational therapy
    evaluation in our clinic the week of June 9-June 12. The group will run
    every Wednesday for 6 weeks starting Wednesday June 25. There will be
    one final land-based discharge evaluation the week following the last
    in pool session. 
    Where: The Children's Hospital of Philadelphia
    Please call April Andrescavage by Friday, May 23 to register: (215)
    590-7467.
  4. Times Square Photo Contest-Celebrate the Buddy Walk's 14th anniversary by entering the Times Square Video Contest. The video, which showcases individuals with Down syndrome from all over the world, will air on the Panasonic News Corporation Astrovision screen in Times Square on September 28 at 10:30 a.m.  The New York City Buddy Walkâ„¢ will immediately follow the video at the Great Hill in Central Park .

    Each year, NDSS receives thousands of photo submissions for the Times Square Video Contest. Because the Buddy Walkâ„¢ promotes acceptance and inclusion of individuals with Down syndrome, the winning photographs feature children, teens and adults with Down syndrome working, playing and learning with friends and family.  Please limit photos to no more than three per individual with Down syndrome.  If more than three pictures are received, only the first three will be considered.

    For more information, or to submit a photo, please click here.  The deadline for submitting photos is July 18, 2008.

    Click here to view the 2007 Times Square Video.

    We will notify you ONLY if we accept your photograph for the video, and we are unable to return any photos.

    For further questions about the contest, contact me at timessquarevideo@ndss.org or 877-526-0270.

     
     
  5. Cardiac Study at CHOP: Help Us Find the Key to Your Heart 

    The department of cardiology is doing a research study to help us understand how  children who are born with heart problems do as they grow older. In particular, we want to understand if genetic differences lead to different health outcomes in children who have the same type of  heart problem.  We hope that this study will help us improve upon clinical care and provide better counseling to families.

    Interested in learning more? Willing to help?

    Please contact:

    Tina Hayden Rush, R.N. @ 267-426-0268

    haydenc@email.chop.edu 

     
  6. Dufferfest: June 21st, 2008
    A family fun music festival event benefitting the Trisomy 21 Program at
    CHOP. Dufferfest is a outdoor family event featuring live music, great food,
    games, crafts and other fun activities. Come join in the fun!!
    To learn more visit www.dufferfest.com 
     
  7. Kennedy Krieger Institute:"Development of Relational Awareness"
    study. The Center for Autism and Related Disorders at the Kennedy Krieger
    Institute is recruiting children with Down syndrome, who are between

    the ages of 36 and 54 months to participate in a study looking at the development of memory and learning in children. The study requires two visits, each lasting approximately 2.5 hours, where your child will participate in play-based, structured activities. One additional parent visit is needed to complete parent interviews, however, these interviews can be done over the phone. For your participation, you will receive a written report of your child’s development on the standardized assessments. There is no charge to participate. If you are interested in participating, please contact our research hotline at 1-877-850-3372. This phone number is connected to a voicemail box that is

    checked daily by one of our research staff. Please leave a message stating that you

    are interested in the “Development of Relational Awareness” study along with your

    contact information and we will return your call.
     
     
  8. 2008 National Conference on Childhood Apraxia of Speech
    Registration is open!!  Williamsburg, Virginia-Coming...July
    10 - 12, 2008
    "Each One Matters"2008 National Conference on Childhood Apraxia of
    Speech. This year's national Conference will take place July 10 - 12,
    2008 at the Williamsburg Lodge, Williamsburg, Virginia.  Exciting
    speakers and sessions! Top experts!  ASHA CE's are offered. For the
    full brochure, lecture descriptions, speakers list, and event times, please
    visit the CONFERENCE INFORMATION PAGE on the Apraxia-KIDS website.
    Please NOTE:  Our space/seating capacity at this conference is limited.
    The available space cannot be expanded, so if you planned to attend,
    you should register early to avoid disappointment.  CASANA cannot
    guarantee a spot at the conference for all who may desire to register. 
    Conference Questions?
    Please contact Kathy Bauer at kathyb@apraxia-kids.org or 412-343-7102.
    Apraxiawww.Apraxia-KIDS.org
     
DS in the Media (books, movies, music, tv)
  1. Miracle League news story

    A member of our group plays on this league.  It is a baseball league for children with all types of disabilities.  To learn more, watch the news story or visit the website at www.miracleleaguelv.org   

     

  2. NDSS is excited to announce a new partnership with Regal Cinemas.  In 6,900 screens across America, several well-known public figures will speak about acceptance and inclusion for people with Down syndrome, highlighting our National Buddy Walk program and October as Down Syndrome Awareness Month. The 30-second film will run from September 26-October 9, 2008 in all Regal Cinemas across the country. Confirmed to speak in the film:

Meredith Vieira, Co-Host of NBC’s The Today Show
Liam Neeson, Actor
John C. McGinley, Actor and NDSS Buddy Walk Ambassador
Albert Pujols of the St. Louis Cardinals
Chris Burke, as well as other self-advocates

For a listing of Regal Cinema locations, please click here.

  1. Letter from Kathryn Lynard Soper of “Gifts II” Book-information on sumitting stories and photos-It's now been one year since GIFTS was released, and we've received tremendous support from readers like you. So far we've sold over 14 thousand copies. With the money earned, we've bought thousands more copies that have been distributed to medical professionals, including the American College of Obstetricians and Gynecologists, and the National Society of Genetic Counselors. With your help, GIFTS II will be another big success!

**** The submission guidelines can be found here: http://giftsds.segullah.org/gifts-volume-ii/

**** Woodbine House is hosting a cover photo contest for this book. You can find guidelines here: http://www.woodbinehouse.com/DS_photo-contest.asp

**** The GIFTS website (www.giftsds.segullah.org) has been redesigned to include several interactive features, including:
 -- a spot featuring incoming links (bottom middle of home page)
 -- DS blog sampler http://giftsds.segullah.org/personal-blogs/  (also featured at the bottom left of the home page)
 -- an expanded links list, with a new "media" category  http://giftsds.segullah.org/down-syndrome-links/
 -- an easier-to-use feedback page  http://giftsds.segullah.org/feedback/
 

You can be part of the site by linking to us on your blog from time to time, adding your blog to our sampler, suggesting links for our links page, and adding feedback to our feedback page. Instructions can be found by following the links above.

  1. I Have A Voice 
    Inspirational Video about Down syndrome
     
  2. Sometimes Miracles Hide
    Welcome to Holland plus inspirational song and video

  3. Trisomy 21 Rap song

    Rapper has a son with Down syndrome and wrote a song about his experience.  This link takes you to his myspace page, then you want to click the “Trisomy 21” song in the upper right corner.

Education

  1.  Parents Effort to Save Pre-School Causes them to pull out their Children
    Like most three year-olds Sam and P.J. just want to play. The two boys met at Cardinal Hill’s highly respected pre-school program where typical kids like Avery and P.J. are in the same classroom with children with special needs like Daniel, Gracie and Sam. Carrie Marshall, P.J.’s mom tells Action News 36,”His best friend in the class has Down’s Syndrome and he has no idea what that is and he ...
     

  2. PA Special Education Legislation-Currently, if parents have disputes with school districts, and they need to resolve these issues with due process, the burden is on the parent to make the case (if they initiate the due process) because the parent is the party seeking relief.  Please refer to
    how Peter Wright explains this process and how it can affect parents:
    http://www.wrightsl aw.com/law/ art/schaffer. impact.pwright. htm

    I urge you to take a half hour out of your day to contact your legislators.
    You can find members by typing in your zip code:
    http://www.legis. state.pa. us/

    This is one of the most significant pieces of PA legislation on behalf of
    children with exceptionalities.

    Please forward this post to all that would be willing to make their voice
    known.  The burden should not be on parents, getting appropriate services
    can be in some cases be very difficult.
     

  3. Beyond Access -- University of New Hampshire, Institute on Disabilities
    Beyond Access is a four-year Model Demonstration Project, funded by the U.S. Department of Education, Office of Special Education Programs, that promotes improved learning of general education curriculum content by students with the most significant disabilities. The project assists school teams to learn, implement, and refine a student supports and team planning model that blends best practices in inclusive education, augmentative communication, collaborative teaming, and professional development.
    URL: http://www.iod.unh.edu/beyondaccess.html

     

  4. Request for a Comprehensive Reading Evaluation (Special Education Network of New Canaan, Ltd.
    Use this link and scroll down to "Request for a Comprehensive Reading Evaluation"  to see a sample letter that parents can write to get real reading programs for their kids who are not proficient readers. The sample letter with attachment is written by Attorney Anne Eason.  Lots of other great links and information are also available at this website.
    URL: http://www.spednet.org/Info_on_Special_Education.htm

 

Inspirational

  1.  Special Volunteer Honored
    A special young man received national recognition for his volunteer work at a local hospital. Michael Ogle was born with Down's Syndrome. He was nominated for the 2007 Frist Humanitarian Award for volunteer service at Coliseum Medical Centers in Macon.
     

  2. Daughter inspires kids' book
    Mom inspired to write a positive book about Down syndrome after receiving little inspiration from the books provided to her in the hospital after the birth of her daughter.
     

  3. Good sports
    Brennan Eve was born with Down syndrome, but she hasn't let it hinder her competitive nature. The softball team she plays on has won its league tournament the past two years, and Eve led her sixth-grade basketball team in scoring last season.
     

  4. Ballet keeps kids on their toes
    Eleven young dancers with Down's syndrome have benefited from an innovative Hub program, and last week they repaid the favor
     

  5. This wish comes true - Cooper will travel to Disney, see favorite actor
    Two of Andy Cooper's most favorite things are swatting a softball and watching Will Smith movies. Despite being born with Down syndrome and suffering with leukemia (now in remission), he's getting his fill of both. The 18-year-old L.C. Bird High student is most active with Special Olympics. He also supports his baseball-playing brothers, Brandon, 16, and Gabriel, 11.
     

  6. A truly special gift
    THE act of giving could be a life-long challenge to some. But what about receiving? My family received a special gift 18 years ago of which we have no regrets. It was my little sister with Down syndrome who gave us the extreme lifestyle and the experience no normal family could have.
     

  7. Seven volunteers trained to provide help to parents of children with Down syndrome
     Having a child with Down syndrome may be daunting to some new or expectant parents, but a local association has recently seen an increase in trained volunteers, who work to provide suggestions to those who need them.
     

  8. Man with Down syndrome touches worshipers with sermon
    It was one of the shortest sermons some of those gathered at Corinth Baptist Church had ever heard. But at the end, elderly women in the front pews were wiping tears from their eyes. The guest preacher got a standing ovation after he stepped down from the pulpit.
     

  9. Graduate With Down Syndrome Speaking At Ceremony
    One     Minnesota student speaking at her graduation ceremony this weekend is proving no obstacles can slow her down.
     

  10. Down syndrome no obstacle to bar mitzvah
    On a recent weekend, friends and family joined Joey Lipsitz for his bar mitzvah, Judaism's coming-of-age ceremony. He had studied intensely for six months and learned to read Hebrew.

Special Olympics

 

  1. Ice Cream Supports Special Olympics- http://www.lovinscoopful.com/
    Try "Lovin'Scoopful" ice cream next time you get the urge for a treat.  25% of their profits go to Special Olympics. 
     

  2. Special Olympics equestrians
     

  3. CLICK HERE to see a video of the Montgomery County Special Olympics equestrian competition from Sunday afternoon.

    SKIPPACK — Anthony Timinski sat tall in the saddle, calmly giving instructions to his horse. He looked very determined as he guided the horse around the ring.

    “A show of hands for Anthony Timinski aboard Honey,” said emcee Jay Lloyd. “Nice job Anthony.”

    The judges agreed, and Timinski won first place in the dressage, walk test category at the Montgomery County Special Olympics event on Sunday.

    “I used to be afraid of horses,” Timinski said.

    Now he wins ribbons and medals in equestrian competitions and volunteers three days a week at Sebastian Riding Associates, a non-profit organization that offers therapeutic horseback riding for children and adults with a wide range of physical, mental and emotional disabilities.

    Sebastian Riding Associates, which has been involved with Special Olympics for 15 years, hosted Sunday’s qualifying event. The winners are eligible to go on to the state games in June at Penn State University in State College

 

Adults With Disabilities

  1. Transition Services for Students Aged 18-21 with Intellectual Disabilities in College and Community Settings -- Models and Implications of Success
     Recently in the field of special education there has been a call for the development and expansion of services for older students with intellectual disabilities outside of the high school setting (Agran, Snow, & Swaner, 1999; Smith & Puccini, 1995; Stodden & Whelley, 2004). In response, local school systems across the country have begun to provide transition services to students ages 18 and older with intellectual disabilities in postsecondary settings such as two- and four-year colleges or other community settings (Grigal, Neubert, & Moon, 2001; Hall, Kleinert, & Kearns, 2000; Neubert, Moon, & Grigal, 2004). This brief provides an overview of some successful models of transition services being implemented in postsecondary settings, describes one such model implemented by the Baltimore City Public School System in three local colleges, and presents some of the implications and strategies for success of this model.
    URL:     http://www.ncset.org/publications/viewdesc.asp?id=3395
     

  2. When Crisis Hits the Disabled  
     

  3. McMinnville woman with Down syndrome 'beats the odds' at 73
    When Mary Perry was born with Down syndrome in the 1930s, people with the disability typically didn't live past age 9.

Science and Research

  1. A life 'lens' ordinary
    Nearly one third of Down's syndrome children who wear bifocal lenses to help them focus accurately may only need to wear them for two years
     

  2. Alzheimer drug may help kids with Down syndrome Local researchers are looking for help from Western Washington families in a study to see if an Alzheimer's drug can help children with Down syndrome. Bellevue-based study
     

  3. New Frontiers of Down Syndrome Research -- National Down Syndrome Society's Educational Series Presentation
    As part of the inaugural event of the National Down Syndrome Society's Education Series, Dr. Roger Reeves spoke on the topic of 'New Frontiers of Down Syndrome Research.' Dr. Roger Reeves is Professor in the Department of Physiology and a Core Faculty Member of the McKusick-Nathans Institute for Genetic Medicine at the Johns Hopkins University School of Medicine. He is noted for his contributions to the study of gene dosage effects using animal models to understand pathogenesis and human genetic studies to identify genetic modifiers that contribute to more or less severe presentation of Down syndrome. His laboratory is studying a possible therapeutic approach for DS features that occur in the brain. He recently discovered the basis for the reduced frequency of solid tumors in people with trisomy 21 and is using a pharmacologic approach based on this observation to reduce cancer incidence in all people. Click here to view his Powerpoint presentation:
    New Frontiers of Down Syndrome Research

 Prenatal

Alaska governor sees 'perfection' in son with Down syndrome
The results of Gov. Sarah Palin's prenatal testing were in, and the doctor's tone was ominous: "You need to come to the office so we can talk