Enewsletter 06-Jul-2007
 
 

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Announcements

  1. Our Next Meeting - Is July 20th 6:30-8:30 at Trinity Lutheran Church in Lansdale. The topic will be transitions. Our experienced parents will present Early Intervention, 3 year old, and school age transitions. This will be full of information for parents and a call for our experienced familes to share with the group. We need childcare So if you know someone that can spare 2 hours of their time, please let us know. It doesn't have to be on a volunteer basis, we can pay a professional as well.

  2. Lizanne Magarity Pando, Partner of Magarity Dealerships and MCDSIG member, received the Rose Rosa Award for her many accomplishments in supporting individuals with disabilities.  The award was presented at a award ceremony featuring keynote speaker Honorable Dennis O’Brien, Speaker Pennsylvania House of Representatives.  Read about it here!


 

Things to Do

  1. BCDSIG Pool & Picnic

    Date:   Sunday, July 15, 2007
    Time:    2:00pm
    Place:  The Pool @ Nockamixon State Park, Route 563 between 611 and 313.  It can be reached in no more than 45 min from all areas of Bucks.
    Cost:   $6 per person/kids under 38" are free

    FYI: For those of you who have not been to the Nockamixon pool, it is VERY kid friendly. They do not allow outside food but there are picnic areas within walking distance. There is also a snack bar within the pool complex.  Contact Mariah Drenth 610-847-8913 or  215-290-3118 (cell) if you are interested.

  2. Pop Warner Football 'Challenger Division'
    The mission of the Pop Warner Challenger Division is to bring the Pop Warner experience to those special needs individuals. Pop Warner's overall goals are to enable young people to benefit from participation in team sports and activities in a safe and structured environment and by establishing a Challenger Division Pop Warner is providing an opportunity for everyone to participate in the game of football.. Click here to visit the Bux-Mont Youth Football and Cheerleading web site for local program information. A registration and parental consent form is also attached in PDF format. For additional information, contact George Adams at geoadams@comcast.net for football and Lisa Dupell at ldupell68@comcast.net for cheerleading.

  3. How to Find Your Groove! - Indian Creek Foundation Social Skills Group  (A Social Skills Program Offered by Indian Creek Foundation For Children and Teenagers With Developmental Disabilities)


Summer 2007 Program
 Date of  Session II:  Week of July 23rd thru Week of August 27th, 2007.
 Cost: $200.00 per 6 week session.  $100.00 is due at time of registration with the remainder due on the first night of the group.  (Sorry, no refunds after 1st group.)
 Location:  420 Cowpath Road, Souderton, PA 18964
Registration: There will be an open registration held on July 10th from 4-6pm.  If your child is new to our social skills program, then they must attend this registration session for intake and assessment purposes. 

 About the Program 

  • Run by two masters level counselors
  • Interactive and fun teaching methods, such as role plays, games, and art activities.
  • Topics include:
    • Feelings and emotions  
    • Assertiveness skills
    • Conversation skills
    • Social rules and boundaries

Requirements: 

  • Minimum age is 8 years old.  Maximum age is 18 years old.  Those referred must have a developmental disability, such as Autism, PDD, Aspergers, or mental retardation.
  • Participants must possess a skill level such that they will be able to interact with others and express themselves verbally or via some other form of communication.
  • Participants must possess a skill level such that they will be able to participate in a group with a staffing ratio of 1 counselor to 5-6 children.
  • An assessment and intake will be completed to determine that the group is appropriate for the child or teen’s skill level.  Parents are required to attend one registration session to help introduce their child, and to ensure that the group will be a good “fit.”
  • Pick up is promptly at the close of the group, and parents are welcome to wait in our lobby during groups.

 To register or for more information contact:

Jenn Iveson, MA at 267-203-1500 x128 or jiveson@indcreek.org

 

Help Requested or Your Submission Sought:

  1.  5th Annual Trisomy 21 Symposium This year's event will be held on Saturday April 12th, 2008 here at CHOP.  They would like to ask each of you for your input and suggestions.  We want to know which topics you are interested in hearing about; which speakers, program or issues concern you most.  Your feedback is important to them! Please email your comments to us at trisomy21@email.chop.edu

  2. Help Get $5 Mil towards DS awareness: NDSS is pleased to announce that we have been selected as one of the Top 50 Fulfilling Organizations in the American Express Member's Projects campaign.   The project that receives the most votes will receive up to $5,000,000 donated by American Express. 

    If you are an American Express cardholder, we encourage you to get your vote in and pass this on to help us make the biggest impact in the Down syndrome movement.  On July 17, the top 25 are announced and on July 24, the field is narrowed to the Top 5. Please help the National Down Syndrome Society fund the next big idea for our world!     How to Help:   1) Go to www.membersproject.com  2) Register to vote  3) Vote for "Awareness Can Build A Family" (or search for project 07794) 4) Spread the word

  3.  Photo Submissions Sought   Celebrate the Buddy Walk's 12th anniversary by entering the Times Square Video Contest. The video, which showcases the contributions that individuals with Down syndrome make to their communities, will air on the Panasonic Astrovision screen in Times Square on September 30 at 10:30 a.m. The New York City Buddy Walk will 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 Walk 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.

Note:  The "Submit Photos Online" link is currently not working.  Photos can be submitted via e-mail. 

For more information, or to submit a photo, please click here.    The deadline for submitting photos is July 20, 2007.   Click here to view the 2006 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.

Prenatal Screening Articles and News

  1.  Noninvasive screening in early pregnancy reduces Down's births by 50 percent
    Nice, France: Non-invasive screening of pregnant women with ultrasound early in pregnancy, combined with maternal blood analysis, has reduced the number of children born in Denmark with Down Syndrome by 50     %, a scientist will tell the annual conference of the European Society of Human Genetics today.

  2. Screening drops Danish Down syndrome rate
    Screening pregnant women in Denmark with ultrasound and maternal blood analysis has reduced the number of children born with Down Syndrome by 50 percent.

  3. New Missouri Law in the works:  This isn't done yet, but there is a bill that deals with tort reform, midwifery and other things that has a section requires mothers carrying babies with Down syndrome to be given this information: high false-positive rates, available resources, adoption options, when presented with prescreening results

Inspirational Stories and Good News

  1.  Parental support – from our Bucks County neighbors.  The Bucks County Down Syndrome Interest Group offers encouragement and education to parents. 

  2. Seeing the light: Mother of a child with Down syndrome says parents should enjoy the journey
    Nice Gifts related article

  3. Down syndrome doesn't deter girl's dreams – a good story about a 15 year old's dreams and inclusion success.

  4. Ballclub fulfills diamond dreams of kids with disabilities in Clifton

  5. Graduation a triumph for Caldwell teen - Among this year's graduates from James Caldwell High School is Bryan Giordano, who is believed to be the first student with Down syndrome mainstreamed at his high school to graduate with his class.

  6. A boy becomes a man in God's eyes -  a story about a boy's bar mitzvah

  7. Kosair Charities giving $19 million - A center to help children learn to live with Down syndrome, more rooms at the Ronald McDonald House for parents of hospitalized youngsters and a day-care center for disabled kids. Those projects are sponsored by three of the 85 nonprofit groups that Kosair Charities will give a total of $19.17 million -- a record one-year amount for the charity.

  8. NFL stars return home for charity - Players will host Down syndrome charity benefit. LAKEWOOD - Local football stars who have gone on to fame in the NFL will return tonight for a charity benefit on behalf of children with Down syndrome.

  9.  Special Olympian wins four gold medals - Devan DeSisto, who attends High Plain Elementary School and has Down syndrome, participated in her second Special Olympics on the weekend of June 16. She won four gold medals.

  10.  Sacramento Mother Provides Resources, Support To Down Syndrome Families - A Sacramento mother is using her experience with her daughter?s Down syndrome to educate doctors and help other families thrive in the face of this genetic disorder.   

Education Related  

  1. Frozen out for having DS A DESPERATE family say their daughter is being frozen out of mainstream schooling because she has Down?s Syndrome. Teresa and Kevin Dennison are battling to get daughter Grace, nine, back at St Mary?s RC Primary School, on Hemming Drive, Eccles.

  2.   Welcome to his world Chip and Priscilla Greene desperately want their 8-year-old son with Down syndrome to be fully accepted in society.

  3.  http://www.ed.gov/policy/speced/guid/idea/monitor/factsheet.html - For the first time, the U.S. Department of Education has issued determination letters on implementation of the Individuals with Disabilities Education Act (IDEA) to each state education agency

Medical

  1.  Are you aware of the Down Syndrome Research and Treatment Foundation (DSRTF)?  DSRTF supports medical research for treatments to improve cognition in individuals w/ Down syndrome. In the past 18 months DSRTF-funded
    researchers at Standford have made significant progress in this area.  You can learn more at the DSRTF website: www.dsrtf.org    If you'd like to be added to the DSRTF newsletter list please click here: http://ga1.org/dsrtf/join.tcl

  2.  Strength Training Helps Those With Down Syndrome - Study Notes Gains In Functional Ability, Quality Of Life Strength training may hold significant benefits for those with Down syndrome, boosting both muscle strength and functional performance. Researchers presented findings on the subject at the 54th Annual Meeting of the American College of Sports Medicine (ACSM) in New Orleans.

 Education Tools

  1. Scientific Learning - This is the computer-based program for language, reading, etc..  Some school districts offer it during the year.  Spring-Ford school district offers it as a summer camp (during ESY).  There are 4 sessions, ea. cost about $900.  Here's the link:  www.scientificlearning.com

  2. Earbonics  http://www.earobics.com/

Education Action Needed

         PREVENT INAPPROPRIATE USE OF IEP GOALS FOR NCLB Take Action!

         Joint alert from the National Down Syndrome Society and National Down Syndrome Congress

        A recommendation that is getting attention in the U.S. House of Representatives is to use IEP goals to measure proficiency for all or some students with disabilities under the No Child Left Behind Act (NCLB). Even if IEP goals are used for a subset of students with disabilities, it is likely that students with intellectual disabilities will be targeted. If this recommendation is accepted it will effectively eliminate most academic accountability for these students. We need Congress to hear this message - Take Action by contacting your representative immediately.

        IEP goals address the skills that students with disabilities need to acquire in order to access the general education curriculum. These goals do not replace the curriculum. You would never want to limit your child's education to his or her IEP goals, therefore accountability for your child's education should not be limited to those goals. IDEA requires states to include all students with disabilities in its assessments because IEPs goals are not an appropriate measure for state and district accountability and because equity demands that these students be an equal part of the accountability system. NCLB must remain aligned to IDEA on this issue.

        One of the most important benefits of NCLB is the requirement that all students receive instruction and assessments that are aligned to the grade-level content standard. Teachers are beginning to see that students with intellectual disabilities can master more grade-level content than they thought possible, especially using modifications, adaptations and accommodations. This development is leading to higher expectations and the realization that students with intellectual disabilities can be successfully placed in regular classes. High expectations are critically important to academic success. WE CANNOT LET THIS IMPORTANT ADVANCE GET ROLLED BACK.

        Please contact your Representative, especially if he or she is on the Education and Labor Committee (see the list below with links to your Representative's website). You can call his or her Washington office by using the Congressional switchboard at (202) 224-3121, send an email by entering your zip code above or contact your Representative locally during the Memorial Day Recess (May 29-June 1).

        It would be helpful to give some examples of your child's IEP goals and emphasize how much more your child is working on in the classroom. For example, science is being assessed under NCLB but there are rarely any science goals on the IEP even though your child receives science instruction.

        MAIN MESSAGE: Oppose the use of IEP goals to measure proficiency under NCLB for any student with disabilities. The IEP says how these students will learn. No Child Left Behind says what they will learn.

        DEMOCRATS       Joe Sestak (PA-07)       Jason Altmire (PA-04)

        REPUBLICANS     Todd Russell Platts (PA-19)

 If you or others you know would like to be added to the NDSS mailing list, send name(s) and email address to advocacy@ndss.org

 

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