10-Jul-2008 Enewsletter

 
 

 

 

Upcoming Events

 

  1. MCDSIG meeting on Friday, July 18th from 6:30-8:30pm at the Trinity Lutheran Church in Lansdale.  Please RSVP by Monday, July 14th, so we can get an accurate count for childcare.  If you know someone willing to volunteer for a childcare or a professional who would be interested in being paid to do childcare that evening, please let us know.  The family who attended the NDSC conference in Boston will share what they learned and there will also be an update about the Regional Council given by our representative. 
     

  2. Cookout at our House:
    We have been wanting to get all the families who live out our way together for a long time.  We are going to have a cookout on August 2nd at our house.  All our welcome, so if you don't live out our way but want to make the drive, feel free to join us!  We know schedules are crazy so we just picked a date and hope some of you can make it!  See email for location.  If you can come, please let us know by Monday, July 28th.
     

  3. Down Syndrome Play Group  
    The Arc of Montgomery County has a play group for children with Down syndrome and their parents.  This group meets monthly at the MARC building in Eagleville, PA or at various other locations throughout the year.  Sue Gemmill organizes this group.  If you want more information about the group, please email Sue at

  4. Fundraising event to benefit the Trisomy 21 Center at CHOP.  You are invited to Down Syndrome Fundraiser by ejohansip@comcast.net, hosted by maura bennett.
     

  5. Little Bit of Majik at Spring Valley YMCA

Special needs program on Tues and Thurs @4:15 with the moon bounce and other sensory items. I don’t think you need to be a member for this.

  1. Eastern PA Down Syndrome Center Annual Picnic-at the Meltzer's Home, games for all ages, moon bounce and more!

3226 Fallow Dr., Allentown, PA
Saturday, July 12th
12:00 noon until 3:00 PM (Raindate: Sunday, July 13th)
Cost: EPDSC Members-Free of charge
Non-members- $20 per family *(cost of annual membership)

  1. 2008 Anna's Amigos: Romp for Research
    Date:    Sunday, September 14, 2008
    Place:   Asphalt Green, New York    , NY (90th Street east of York Avenue)

The 2008 New York R0MP FOR RESEARCH for the Down Syndrome Research and Treatment Foundation is set for Sunday, September 14, 2008. The NYC R0MP will be held
at Asphalt Green in Manhattan ( 90th Street ; east of York Avenue ). Last year's second
annual R0MP was a huge success. With your help, their supporters raised over $175,000 for Down syndrome cognition research -- more than 800 people came out for a wonderful cause. The event includes food, music, games and entertainment. For more information or to find out how you can help support Down syndrome cognition research visit www.AnnasAmigos.com or  www.RompForResearch.com

  1. Little Wonders Offering Summer Camps - Unique summer programs allow every child to enjoy and participate regardless of their ability level.  

Schedule: (Session = Monday – Friday for three hours per day)

WEEK 4:      JULY 14  –  JULY 18          9AM – 12PM

WEEK 5:      JULY 21  –  JULY 25          9AM – 12PM

WEEK 6:      JULY 28  –  AUG 1             9AM – 12PM

  1. 2008 Pennsylvania Community on Transition Conference:  Building Leadership to Promote Successful Outcomes

-offered by the Pennsylvania Department of Education, Bureau of Special Education


When: 
July 22, 2008 - Pre-conference - 10:00 am - 4:30 pm
July 23, 2008 - 9:00 am - 5:30 pm
July 24, 2008 - 8:30 am - 5:15 pm
July 25, 2008 - 8:30 am - 12:45 pm

Location: 
Penn Stater Conference Center, State College

Registration Fee:  $100

Description:  
The vision of the PA Community on Transition is that all Pennsylvania youth and young adults with disabilities will successfully transition to the role of productive, participating, adult citizens.  Youth will be empowered to recognize their talents, strengths and voice and have equal access to resources that promote full participation in the communities of their choice.

The primary purpose of this conference is to expand the capacity of schools and community partners in promoting the successful transition of youth/young adults with disabilities to post-school outcomes of employment, post-secondary education and training, community participation and healthy lifestyles.  Participants will have the opportunity to learn about effective practices to assist youth/young adults with disabilities in achieving successful post-school outcomes. 

 

You may register directly on-line by visiting www.pattan.net and entering the Registration On-line page. 
Content Related Information and Questions:
Michael Stoehr at mstoehr@pattan. net
412-826-6864
General Registration Information and Questions:
Pam Ranieri at pranieri@pattan. net
412-826-6871 (automated)

 

  1. Standards-Based Individualized Education Programs

-offered by the Pennsylvania Department of Education, Bureau of Special Education


When:  Tuesday, August 19, 2008-PaTTAN Pittsburgh Office
            Wednesday, August 20, 2008-PaTTAN King of Prussia Office
            Thursday, August 21, 2008-PaTTAN Harrisburg Office

Time:  9:00 a.m. - 3:30 p.m.

Description:  This is a full-day training for regular education teachers,
special education teachers, building and district administrators, parents,
school psychologists, guidance counselors, IU Consultants, and other school
personnel who work with students who take the PSSA.  The training will
provide information on how to assess student skills relative to the
Pennsylvania standards, utilize those data to develop standards-based IEP
goals, implement targeted instruction to meet those standards, and develop
progress monitoring tools and schedules to evaluate and improve instruction.


Presenters:  PaTTAN and IU Consultants

Credit: Act 48

You may register directly on-line by visiting www.pattan.net and entering
the Registration On-line page. 

Content Related Information and Questions: Timothy Runge, (717) 541-4960
ext. 3919; email: trunge@pattan. net.

General Registration Information and Questions: Sue Cartwright, (717)
541-4960 ext. 3431; email: scartwright@ pattan.net

To obtain directions to PaTTAN, please select the appropriate location:

PaTTAN Harrisburg:
http://www.pattan. net/about/ Harrisburg. aspx

PaTTAN King of Prussia:
http://www.pattan. net/about/ KOPDirectionsand Accomodations. aspx

PaTTAN Pittsburgh:
http://www.pattan. net/about/ PittsburgDirecti onsandAccommodat ions.aspx

  1.  The Brad Hennefer Golf for Life Foundation 3rd Annual Golf Classic

August 18, 2008

Woodcrest Country Club

300 E. Evesham Rd.

Cherry Hill, NJ 08003

Visit golfforlife.org for registration information. Event is free to individuals with Ds, but they are also looking for sponsors for the event.

  1. A FREE SEMINAR presented by CJD&J Attorneys at Law

“SPECIAL EDUCATION LAW 101: 

WHAT EVERY PARENT SHOULD KNOW”

Tuesday, July 22, 2008

7:00 P.M. to 8:30 P.M.

Horsham Township Community Center

1025 Horsham Road, Horsham

Registration at info@cjdjlaw.com is encouraged

For more information, please visit www.cjdjlaw.com

 

Useful Websites

 

  1. New Website for Dads of children with Ds

www.dadsnational.org

Dads Appreciating Down Syndrome, or D.A.D.S., is an organization of fathers of children who happen to have Down syndrome. We hesitate to call our self a “support group”, even though we do, in many ways, support each other. We prefer to think of D.A.D.S. as an “action group.” You won’t find us in a church basement drinking warm coffee and whining about having children with Down syndrome. Instead, you’ll find us out in the community coaching our kid’s sports teams, participating in our children’s IEPs, volunteering at local Down syndrome fundraising events, and even sponsoring fundraising events of our own.

We host regular meetings where our members come together to share insights and experiences. Face it: there are certain responsibilities that generally fall on the shoulders of the father. Having a child with special needs often affects how we approach those responsibilities. We invite expert speakers to discuss medical, educational, financial, social, and many other issues that affect our children’s lives. And of course, we share stories and experiences that are unique to fathers of children with Down syndrome. Your colleagues at the office may not understand your excitement when your 5 yr old makes “poopie” on the toilet for the first time, but other D.A.D.S. will, because we’ve all been there.

NDSS and NDSC e-news updates-We receive frequent updates from these national organizations.  These updates are too frequent and numerous to include in the newsletter.  We encourage you to visit the websites and sign up for the email lists if you wish to receive this important information.

Research

 

  1. Stanford University Research research in drugs that may improve cognitive impairments
     

  2. University of Michigan Researchers Help Teach Kids with Autism, Down Syndrome Learn to Ride Bikes
     bike study article
     

  3. Children with Down Syndrome Sleep Poorly and Have More Fragmented Sleep"
    http://www.eurekalert.org/pub_releases/2008-06/aaos-cwd050708.php
     

  4. Project Report on Technology and Down syndrome - The Technology Access Project (TAP) was designed to examine the effectiveness of assistive technology as an educational tool for students with moderate to profound intellectual disabilities

 

Inspirational Stories

  1.  Video of group members Riley and Gavin Deetz  on the news!  http://abclocal.go.com/wpvi/media?id=6251522
     

  2. A happy man: Amazing Austin overcomes Down syndrome to live independently
    He swings into the supermarket, snatches up a small shopping basket, waves to his boss and makes a beeline for the bananas. He has carefully combed his straight, brown hair, shaved his soft, round cheeks and tucked his pink button-down shirt into his jeans -- but on this day he is not working.
     

  3. Father and son: 'He's my posse,' in sky and in life
    Despite Down syndrome, Casey Deegan jumps at any chance to follow his father -- even out of an airplane
     

  4. This one ends well  It started with a simple "no" emanating from the Hanover Park Regional Board of Education. Alicia Vitiello, of East Hanover, who has Down syndrome, had attended school with largely the same group of youngsters for 12 years.
     

  5. Scott Township golfer with Down syndrome defying the odds
    As the blazing sun beats down upon him, he walks up along side it and balances his feet, ever so slightly. After a quick shrug of his shoulders, he eyes the target. Slowly he raises his TaylorMade driver, swings through the ball and powers it into the heart of the fairway. Humbly, he just walks to his coach, his uncle, Bob Davis, and puts his club away.
     

  6. Campers with Down syndrome learn football
    For years, Andrew Watson and Trevor Lucken have served as sideline inspirations for the Valley Christian and Pioneer football teams.
     

  7. HEATHER NEWMAN: UM researchers help teach kids with autism, Down Syndrome to ride bikes Just 1 in 10 kids with Down Syndrome can ride a bike. But an experimental five-day training program at the University of Michigan is helping to change that for 80 children with Down Syndrome and autism.
     

  8. Wishes come true for Down Syndrome child, family
    VIEW SLIDESHOW PEYTON - The wishes of a Colorado woman and her family came true with a little help from a local business.
     

  9. Off to Portugal to swim for Australia
    TWO of Armidale’s elite swimmers will line up for their country in November for the World Down Syndrome Swimming Championships in Albufeira,     Portugal.
     

  10. He's a natural — An actor with Down syndrome, 16-year-old Quinn Pleau-MacWilliam steals every show
    Quinn Pleau-MacWilliam stands at the top of the stairs, hollering lines down to his mother in the kitchen. This is how the 16-year-old actor memorizes his roles; and the best way for Pleau- MacWilliam, who was born with Down syndrome, to practice annunciating his words clearly, said mom, [...]
     

  11. Host carers share important family bond
    TEN-year-old Jayden Curtis spends his time surrounded by family. In fact, the youngster, who has Down syndrome, has two families. Each month he packs a bag and heads to visit Wantirna resident Brigid Cantwell for a weekend to provide respite for his parents, Jenny and Martin Curtis.
     

  12. Germantown, bop clubs bring dancing to people with disabilities
    Chad, 11, who has Down syndrome, has just learned the River Waltz

     

Adults With Down Syndrome

 

  1. Brazil's mentally-disabled couple get baby birth certificate after two-month judicial battle
    People's Daily Fri, 13 Jun 2008 8:48 PM PDT
    Maria Gabriela Andrade Damate, who has Down syndrome, and her boyfriend Fabio Marcheti deMoraes, who has mental retardation, finally got their baby birth certificate, following a judicial battle that lasted over two months, the Brazilian pr ...
     

  2. Road to Self-Sufficiency: A Guide to Entrepreneurship for Youth with DIsabilities
    This free guide was developed to serve as a resource for organizations working with youth on career exploration and employment options, and policymakers who support youth programs through policy and practice.  The Guide shows how entrepreneurship education can be implemented in programs and offers suggestions on how to introduce self-employment as an option  for all youth, including youth with disabilities. A set of appendices with valuable resources and references is also included, as well as a useful Glossary of Terms. Visit the following web site to download the entire guide (or by section, if you prefer) and to sign up for their newsletter: http://www.ncwd-youth.info/resources_&_Publications/entrepreneurship_guide.html#order

 

Products

 

  1. Eyewear made for children with Down syndrome

Maria Dellapina is the mother of a nine-year-old daughter with Down syndrome and an optician.  She has partnered with a manufacturer to create SPECS4US  Inc. which makes a workable frame for children with Ds and other special needs. 

 

Call Maria at 1-800-586-1885 or email at info@specs4us.com. Check out the webpage at  www.specs4us.com , to learn more.

  1.  Dolls with Down Syndrome May Help Kids
     http://abcnews.go.com/Health/story?id=5255393&page=1

Vacation Tips

Vacation Tips are featured in the Family Center on Technology and Disability.  Here is the link to the newsletter.

 

Early Intervention, IEP, and School Recaps

Our past newsletters and meetings featured great information about getting therapies, IEPs, ect.  I wanted to highlight them in case you missed them or are ready for the next transition.

 

Starting Early Intervention (EI)

The 3 Year Old Transition (going from EI to the IU)

Our personal experience with this transition

The School Age Transition (going from the IU to the School)

 

Getting Extra Therapy