Enewsletter 14-Oct-2007
 
 

MCDSIG news, involvement opportunities and other things

  1. Grant Available for NDSC Convention – National Down Syndrome Congress (NCSC) holds a convention every year somewhere in North America.  In 2008 it will be in Boston on July 11-13.  I’ve heard lots of good things about this convention.  If you follow the link above you can hear all about the 2007 one.  The MCDSIG would like to grant money for interested families from our group to attend.  We have designated a set amount that would be divided amongst interested families.  Our first step is to see how many families are interested in attending the convention.  If you are interested, please express your interest by Nov 9th by email.  Of course there is a small catch.  The attendees will be our presenters for our July 2008 information meeting.
     

  2. List of Positive DS Things– We would like add a page to our welcome folder that we give to new parents, OBGYNs and Hospital nurseries.  The document I envision is a list of positive expectations about Ds.  New parents are typically given a list of expectations that are clinical and negative.  I think that our families have a load of “glass half full” experiences that we can share with new families.  Put together your thoughts and email them to us.  I will compile them, put it in the folders and share it with you and the online community.  Start thinking now.
     

  3. Next Meeting –We have been working the last couple of weeks to book a really cool topic.  This isn’t finalized yet so we don’t have a finalized topic or date.  We will definitely keep you posted as we put it together.
     

  4. Holiday Party Save the Date – Saturday morning Dec 8th.  Our holiday party is booked and the entertainment is confirmed.  We will be having breakfast with santa at the same place in Lansdale.  Mark your calendars now, I know how the Dec dates fill up so fast.  See pictures of last year’s party here.
     

  5. Our IEP Experience – Josh turned that magic number of 3 on Oct 9th.  We are on the verge of “sealing the deal” with our IU now.  Rose and I are putting together a detailed document about our experiences and the things we learned.  This will be coming out next week.  We feel that our experiences will help everyone that is nervous about transitioning from the IFSP to IEP.  If you aren’t familiar with any of these terms or transitions see our past newsletter that featured our parent’s compilation of this information.
     

  6. Can someone recommend a church (non-denomination or presbyterian) that is inclusive of children with DS?  Please contact  Kavita by email at khelsel@comcast.net

Social Places to Go to:

 

  1. Come to a Beef and Beer to raise funds to help send the challenger football team and the challenger cheerleading team to compete at the Pop Warner Super Bowl at Disney's Wide World of Sports.
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    New Date and Place

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    Date: November 10th from 8:00 pm-12:00 am
    Where: North Penn Social Club (Above the North Wales Firehouse)
    Cost: $20 per person or $35 per couple
    Contact: Call Jen Deetz for details 215-646-5546

    It will be a great time for a great cause. Bux-Mont Challenger Beef and Beer. Lots of raffles, awesome prizes, 50/50. See the Challenger Website to learn more about he cause.

  2. Girls On The Go’s 1st Event!
    Date:    Saturday, November 17th, 2 p.m. to 5 p.m.
    Where:  Horsham Township Library, 435 Babylon Road, Horsham, PA
    Cost:  Free
    RSVP by: Please respond ASAP to reserve your spot as spaces are filling quickly. 
    Contact:   To sign up for Girls on the go or to receive information regarding services that peaceful Living offers call 610-287-1200 or Email us at talk@forthegirls.org or girlsonthego@gmail.com 

    A social program designed to foster self-esteem, social skills and life skills for girls with disabilities.  Light refreshments will be provided.  Fashion show at 5 p.m.  Parent seminars during the event.  Raffles and Give - Aways!!

    This event is supported by many community volunteers to present our participants with the opportunities to develop skills in areas such as hair care, dressing for success, posture, healthy eating, and social relationships. We only have 13 out of 25 spots available, so please contact us now to sign up!

    Visit the web at http://forthegirls.org or www.peacefulliving.org
     

  3. Princeton University Down Syndrome Conference: "Turning The World Upside Down"
    Date:    Saturday, November 17th, 10:00 - 8:00pm
    Where:  Princeton University, Princeton, NJ
    Cost:  Registration is $10 per person. There is no registration for all
    attendees with Down Syndrome and all attendees under the age of 18.
    RSVP by:  Registration is due October 17, 2007
    Contact:  Please contact Jenni Newbury at jnewbury@princeton.edu or (908) 581-4957 for more information.
    See the registration form.

    Princeton University's Class of 2010 is sponsoring the first-ever Princeton Down Syndrome Conference. An exhibition of the services and programs offered for families of children and young adults with Down syndrome. Keynote speakers, workshops and exhibitors will target current issues affecting the Down syndrome community. Children will be paired with a trained Princeton University student for an indoor carnival with music, games and prizes.

    Parents will have the opportunity to hear keynote speakers, attend two workshops of their choice, and receive information from over 30 exhibitors at the event. While parents enjoy the convention, all children and young adults with Down Syndrome (and any interested siblings) will be escorted by th eir own personal, trained Princeton University Student to an Indoor Carnival complete with games, prizes, music and much more. We will have activities for all ages (including a nursery). Complimentary brunch will be provided in the morning during registration, and all of the attending families and volunteers will enjoy a complimentary Banquet-style dinner as well. After dinner, we (hopefully) will be screening the Camp PALS Documentary, featuring all of the amazing campers from this past summer!
     

  4. The Behavior Excellence Program – has programs throughout the year.  See their website.  Their programs include a gymnastic program, camp and other things.  Contact them to stay up to date on their programs.

Informational Seminars:

  1. MARC - has a bunch of events coming up from feeding support groups to a holiday party. Please take a look at their flier (it is a pdf) There are fun ones and informational ones too!

  2. How Do You Write an IEP?
    Date:  Tuesday, October 23rd  at 7:30pm
    Where: LITTLE WONDERS, Child Growth & Development Center, Inc®, East Norriton
    Cost:  Free
    RSVP:      RSVP is preferred, but not necessary
    Contact:      (email: eric@littlewonderscenter.com or call 610-275-KIDS) 

    Informal Meeting for Parents to Meet and Share Information.  All parents or caregivers of children with special needs are welcome to attend.  Guest Speaker:   Liliana Yazno-Bartle, Associate attorney at The Law Offices of Caryl Andrea Oberman since September 1997, concentrating on legal issues of persons with disabilities and their families, education rights, estate planning and domestic relations.  (Please, no children)

  3. Educational Session on Transition
    Date: Saturday, November 3rd, 9 a.m. - 12:00 p.m
    Where: The Children's Hospital of Philadelphia, Abramson Research Building, Conference Rooms 123-ABC, 1st floor
    RSVP: Registration is required as space is limited. 
    Contact:  Please register by sending an email with your name and contact information to Trisomy21@email.chop.edu  
     

  4. Gaskin Settlement Agreement Advisory Panel Public Hearing
    Date:      Saturday, November 3rd, 1:00-4:00 pm
    Where:    Millersville University, Myers Auditorium, McComsey Hall, 43 East Frederick Street , Millersville, PA 17551
    Cost:  Free
    RSVP:  Regina Goss, 717-872-3151, rgoss@millersville.edu

    The Gaskin Settlement Agreement addresses inclusive educational practices for students with disabilities and articulates the establishment of an advisory group to the Department of Education to address such issues. This agreement mandates training and technical assistance, as well as monitoring and compliance regulations requiring local schools and school districts to offer a full continuum of support
     

  5. Educational Workshops on the systems that serve Montgomery County
    Date:  Thursday Evenings 6:00 pm to 8:00 pm
    Where: North Penn Valley Boys and Girls Club, 16 Susquehanna Avenue
    Lansdale, PA 19446
    Cost:  Free
    Contact:  Lisa Novick, 610-279-8511 ext. 113 lnovick@mhasp.org

    As a participant, you will learn about the following  (some of these may have already met):

    • Behavioral Health System
    • Magellan
    • Special Education System
    • Drug and Alcohol System
    • Juvenile Justice System
    • Mental Retardation System
    • Children and Youth System
    • What you need to know for effective advocacy
       

  6. The 5th Annual Trisomy 21 Symposium (Save the Date)
    Date: Saturday, April 12th, 2008, 8 a.m. - 4 p.m.
    Where: The Children's Hospital of Philadelphia

Scientific/Medical News 

  1.  Down syndrome gets lift - follow up article about the research going on in Denver about reversing the cognitive effects of DS
     

Inspirational and "Us" Stories

  1. Nigeria: New Hope for Down Syndrome Children - Children with Ds are getting some services in Nigeria with the help of a special school
     

  2.  Stuart mom shares story of fear, pride in Down syndrome book - A look at one of the families that contributed a story to Chicken Soup for the Soul: Children With Special Needs.
     

  3. Karen Gaffney conquers Lake Tahoe – Last newsletter I featured an article about this woman’s preparation in swimming across Lake Tahoe (that is a 9 mile swim) to raise awareness about DS.  At the time that I was writing the newsletter, I didn’t realize that the swimmer had Ds.  This feat not only raised the awareness but it brought attention to the accomplishments that people with Ds are capable of.  But if the article didn’t fill you with pride and awe, I dare you to watch the end of the race without being moved.  Visit her advocate website. 
     

  4. Determined to see what's out there – a story about a young self-advocate. 
     

  5. Special Olympics Opening Ceremony Reflects the Heart and Spirit of China
     

  6. Meet Sara Goodman – a nice piece about a 9th grade student that helps raise public awareness.
     

  7. Light of hope: Families here share bright message of children with Down syndrome - - a nice piece that tells the story of one of the pictures used in the Buddy Walk collage presented by NDSS in NYC.
     

  8.  If you missed John C. McGinleyh and Chris Burke on the Today show, follow this link to view it:  Chris Burke and John C. McGinley on the Today Show re: Buddy Walk
     

  9. GOALS: Down syndrome couldn't stop Chris Burke - More on Chris Burke, his band and his philosophies. 
     
  10. The O'Briens' greatest blessing – A great story about about a young adult with Ds told from the families point of view.
     
  11. A Little Help From Friends - Just like the friendships that are forged in our group,  these mothers discover friendship as a result of their children’s diagnosis.
     
  12. Golf For Children With Special Needs- An article written by a mom about her son’s quest to golf.
     
  13. A girl is denied the chance to play soccer, but media attention changed that.  See both articles below:
    Girl With Down Syndrome Denied Chance To Play Soccer" (Canada)
     Sadie's All Set For Soccer Fun and Games" (Canada)
     
  14. Combatting the Complications  – story about a young family going through the early stages of rearing a child with Ds, video included.

 

PreNatal

  1. To Screen Or Not To Screen
     

  2. How perfect should our children be? - Breakthroughs in prenatal screening face a backlash from those who say kids with Down syndrome enrich life and should be valued, not weeded out. Scientists say they're simply providing an option for parents confronted with a sometimes-heartbreaking disorder.

Careers and Postsecondary Education

  1. "Shutterbug" for "Special" Photographers – TV news program on a photographer. 
     

  2. Program aims to gives dignity to developmentally disabled - Good article that shows there are much more careers and fulfillment opportunities for people with DS 
     

  3. Celebrating Jamie for a job well-done - Known as the "hardest working man" at his Arc of Monmouth group home. 
     

  4.  NDSS put together recent exciting developments in Postsecondary Education

Click here to read about:
New Technical Assistance Center to help colleges expand and develop programs for students with intellectual disabilities
Pathway program at UCLA to be featured on NBC News and Today Show
Higher Education Act - Important new provisions included in Senate reauthorization

 

Books

  1. Chicken Soup for the Soul Celebrates Children with Special Needs

  2.  Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality

Other Stories

  1. Developmentally Disabled Services Scarce - A local woman said she was told to get a divorce to get the help she needs for her son, who has Down syndrome, but that’s not where her story begins. Video

  2.  Rise School of Stillwater to Open - The Rise School of Stillwater is a preschool for children ages 18 months to 3.5 years. Providing the highest quality of early childhood education and intervention services to children with Down syndrome or other developmental disabilities, the school is also open to typically developing children. 
     

  3. NDSC Awareness Campain Update:
    Here's a quick update on our More Alike campaign. To date, we've received about $80,000 in pledges and donations. That's about one third of the way to our $250,000 matching grant goal. As you know, this is a long term program, and we'll be implementing different parts of it one step at a time. Unfortunately, Super Bowl commercials and People magazine ads aren't a practical strategy for us! We do plan to have print PSA materials for you to download in the next week or so. As soon as they are available, we'll let you know where there are, and how to use them.

We're More Alike Than Different
 

 

  1. Differently abled toy catalog is out.__

Legislative Action Alert

NDSC Action Alert! – Call your House of Representatives Member to Override

Children’s Health Insurance Veto this Tuesday.

 

Several million children, both with and without disabilities, do not have access to health coverage.  Although Congress voted to add these children to the State Children’s Health Insurance Program (SCHIP), the President vetoed that measure.


On October 18, the U.S. House of Representatives will vote on overriding that veto.  It will be close -- rejecting the veto takes a two-thirds vote. 

That's why your call is so important.

Please call your Representative on Tuesday, October 16
Toll-free number:  1-800-965-4701

The message is:

Override the veto of the Children's Health Insurance Program Reauthorization Act.   (H.R. 976).

If you do not know the name of your Representative, go to www.house.gov and type in your zip code in the upper left hand corner.


See how your Representative voted on final passage of the children's health bill:  http://clerk.house.gov/evs/2007/roll906.xml 

If your Representative voted no, or did not vote, your call is especially important - some of the”no” votes or absences must be turned around in order to get to two-thirds. 

 

 

 

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