Enewsletter 02-Sep-2008
 
 

 

 

MCDSIG Upcoming Events

 

  1. Friday, September 26th, MCDSIG Pizza at the Park-Come enjoy free pizza at the park, talk with other families and give the children an opportunity to play together on the playground on Friday, September 26th  from 5:30-7:30pm.  This is NOT the castle park, it is the park we were at last year off of Morris Rd.     http://www.towamencin.org/parksandrec/fischerspark.htm
     

  2. Friday, November 14th, MCDSIG November Meeting-(topic to be determined) Information meeting at the Trinity Lutheran Church in Lansdale from 6:30-8:30pm on Friday, November 14th.  We will try to provide childcare, but as always if anyone knows someone who would be willing to volunteer or a professional, who would work for pay, please let us know!
     

  3. Saturday, December 6th, Holiday Breakfast at Marjeane’s Caterers in Lansdale-Save the date for the holiday breakfast, details will be sent out in November.

MCDSIG Information

  1. MCDSIG T Shirts-We still have several t shirts available for purchase in the following quantities and sizes: 
    (7)3T
    (1)YS
    (1)YL
    (1)AL
    Adult and youth sizes are $15, toddler sizes are $12. Please let us know if you would like to buy any of the remaining shirts.

  2. MCDSIG Library-Our group has books and a dvd which can be lent out to group members upon request.  If you would like to borrow any of these resources, please let us know.

  • Down Syndrome: The First 18 Months DVD
    Thirteen leading medical and developmental experts on Down syndrome, experienced parents, and infants and toddlers with Down syndrome are brought together in this heartwarming DVD to inform, inspire, guide, and support.
     
  • Fine Motor Skills for Children with Down Syndrome
    The most up-to-date, comprehensive resource on fine motor development for children with Down syndrome in a revised and expanded new edition.
     
  • Gifts
    A poignant collection of personal stories by mothers describing the gifts that their child with Down syndrome has brought into their lives.
     
  • Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality
    A healthy, proactive approach to educating children with Down syndrome about their bodies and sexuality.
     
  • Babies with Down Syndrome
    This is the trusted guide for new parents who have welcomed a baby with Down syndrome into their lives.
     
  • Show Me Some More A preschool level picture book that tells the story of a boy who has Down syndrome getting his first pet.
     
  • Compendium from the 2008 NDSC Convention in Boston A collection of presentation materials from all the workshops from the convention.

 

 

Other Upcoming Events

  1. The Children’s Hospital of Philadelphia Buddy Walk and Family Fun Day
    When: Sunday, Oct. 5, 2008, from 10 a.m. * 1 p.m.
    Where: Villanova Stadium on the campus of Villanova University.
    Why: The walk raises funds for patient care, research and education for the Trisomy 21 Program at Children’s Hospital.
    For more information, please visit www.tri21center.org
     

  2. Sibling Groups

Come, have fun, play games, meet other kids with brothers and sisters with special needs and

share thoughts and feelings.

Young children group Wayne:  2nd Saturday morning of every month from 8:45-10 for children 4-6.

987 Old Eagle School Road, Suite 712, Wayne.

Ongoing group in Wayne: 2nd Saturday morning of every   month from 10:00-11:30 for children 7-12.

Group facilitators: Dale Fisher, LCSW and Deirdre Miller, MA.

Cost: $35.00

 Contact Dale Fisher 610-668-8890 or email dalefish2000@aol.com for additional information.

  1.  Power Through Knowledge Independent Living Conference The PA Statewide Independent Living Council will again host the wildly popular, engaging and educational Independent Living Conference.
    Save the dates April 2-4, 2009 and plan to join us at the Harrisburg Hilton for the best conference yet!  Please contact Kevin Hensil (kphensil@pasilc. org) for more details at 717-364-1732.
     

  2. Best Practices in Transition Planning for Adult Life in Your Home Community SAVE THE DATES!  Fall 2008 Transition Workshops: Wednesday evenings, Oct. 1 through Nov. 19, 2008  7:00 to 8:30 at Gwynedd Mercy College

Eight (8) Workshops for parents/caregivers of students with intellectual disabilities.

Information: www.getontrack.us

  1. QUALITY OF LIFE GRANT APPLICATIONS ARE NOW BEING ACCEPTED

Through our Quality of Life Grant program, families that care for
children and adults with autism and other special needs may receive
funding to offset their enormous financial burdens. These grants provide
families with stipends that may be used for a wide variety of supports
related to their family member.  Visit the website for information:   http://www.neighborheart.org/grants.asp

  1. Indian Creek Foundation Tuesday Talk phone conferences, located in Souderton Pennsylvania, serves over 700 individuals with developmental disabilities and their families. Founded in 1975, the Foundation has a long history of providing innovative services to meet the vocational, family, personal and spiritual needs of people with developmental disabilities from birth to death.

Tuesday Talk phone conferences are FREE opportunities that allow businesses to get some monthly education about disability related topics and network with other companies.  These Tuesday Talks are scheduled from 8-9 a.m. the second Tuesday of every month.  Businesses interested in participating in Tuesday Talks should email or phone Stacy Kyle to register.

Stacy M. Kyle-PA Business Leadership Network (PA BLN)

717-763-0968 ext. 115 (Phone) 717-763-0988 (Fax)

stacy.kyle@blnofpa.org , stacy.kyle@ahedd.org (emails)

www.blnofpa.org , www.ahedd.org (websites)

INDIAN CREEK FALL TRAINING BROCHURE  http://www.indiancr eekfoundation. org/pdf_files/ Brochure- Fall2008. pdf

  1. Local YMCAs offer programs to children and adults with special needs-Those who live in northern Montgomery County should be aware that the North Penn (Lansdale) and Indian Valley (Harleysville) YMCA program guide for the upcoming program period beginning September 2, 2008 (with registration opening 8/11) includes several special needs programs, particularly for adults, and some at no cost.  (I have listed the page numbers of the upcoming brochure, which is not yet on the web site at http://www.northpen nymca.org/ home/Brochure. pdf .)  For example there will be a “special needs sports class” for adults on Wednesday evenings, (that appears to be free) (page 18), “Special Population Recreation” classes for children with autism from ages 5 to 10 (page 41), a “special needs sports class” for persons up to age 18 (page 41), a variety of s pecial needs aquatics programs (pages 19 and  53), in addition to the traditional Special Olympics classes long offered at the North Penn Y (page 18). 
     

  2. New program @ Fort Washington YMCA-The B.U.D.D.Y– System for children with special needs: The BUDDY System is a program that will help children with special needs by increasing self-esteem, teach proper exercises & nutrition.  Members will learn relaxation techniques. The program also provides parents with their childs progress and how to help beyond the program. @ Fort Washington YMCA Tuesday & Friday from 4:15-5:00PM.  Cost will be: $40.00 for full members & $80.00 for program members. For more information visit our web-site @ www.philaymca. org or contact Kathy Perry @ 215-641-1245.
     

  3. EPDSC/Lehigh Valley Buddy Walk is September 20, 2008  www.epdsc.org
  1. Little Wonders Offers Birthday Parties -Our highly trained staff has experience working with children with special needs. Our expertise allows every child regardless of their ability level to participate and have fun. Call 610-275-KIDS  or visit www.littlewonderscenter.com.  Also, enrolling now for fall sessions focusing on many different areas, including sensory, communication, gross motor and others.
     
  2. Kix and Giggles Play Center

Fun place to play in the Northeast and is free on Tuesdays.

http://www.kixandgiggles.com/rates.asp

  1. Human Resource Management Trainee program

Application requirement: a Bachelors degree

Benefits:                Training in a Dynamic, Supportive Environment

                                Training- for a Career Change

                                Training- by Top HR Professionals

                                     

      • Limitless opportunities for growth
      • Exposure to a variety of Commonwealth agencies
      • Significant networking opportunities
      • Variety of HR field specialties
      • Twelve months of interesting assignments followed by promotion on successful program completion

Go to  www.state.pa.us/hrmt

  1.  Seminar on the SCERTS Model
     

    by lead collaborator Dr. Barry Prizant. Check
    out this link from the Inclusion Notebook from the     University of
     Connecticut about the SCERTS Model:
    http://www.uconnucedd.org/pdfs/Inclusion%20Notebook_Rev%206.12.pdf .

    The SCERTS Model: A Comprehensive Educational Approach Autism Spectrum
    Disorders & Related Disabilities : Speech Language & Communication
    Disorders / Learning Disabilities / Sensory Processing Disorders /
    Developmental Disabilities with Emotional Behavioral Challenges for
    Early Intervention, Preschool and School-Age Children

    2-Day Introductory Seminar presented by SCERTS Model Collaborator
    Barry Prizant, Ph.D., CCC-SLP

    King of Prussia, PA -- September 22-23, 2008 Crowne Plaza Valley Forge

    Co-hosted by Chester County Intermediate Unit, Downingtown, PA
    Early bird rate until  September 1st !
    Brochure early bird rate is $295; $315 after September  1; team rate
    $285
    p.p. (4 or more from an agency/district)
    Special Parent & Family Member rates: $195 p.p.
    Save even more--get your team together!!
    Six or more from a district/agency receives a complimentary DVD ($279
    value) of Autism & The SCERTS Model

    The SC, ER & TS domains of the Model directly address the core
    challenges
    faced by children with ASD and related disabilities. Go to
    www.scerts.com
    for more information about this exciting new approach to working with
    children with asd and related disabilities!



    OTs: Approved for OT certification for 11 contact hours through NBCOT.

    Social Workers: This seminar is approved by NASW RI Chapter for 11.0
    Credits. Authorization #RI-3260.

    APA: Childhood Communication Seminars is approved by the American
    Psychological Assn to sponsor continuing education for psychologists.
    CCSeminars maintains responsibility for this program and its contents.
    11
    CEs are awarded.

    ACT 48: 11 credit hours will be awarded.

    All participants will receive a certificate for 1.1 CEUs/11 contact
    hours.

    Please email kelly@ccseminars.com  with questions.   
    Register 6 or more and also receive a complimentary DVD

 

 

Prenatal

A mom's reaction to questions about prenatal testing-good article

Inspirational Stories

  1. http://www.youtube. com:80/watch? v=CoqaNG0Ozqc Inspiring speech by the brother of a student with special needs.
     

  2. Hundreds come out for Special Kids day
    Max Dingeman used to come to Fun and Games for Special Kids day as a participant. Now, Dingeman, who has Down syndrome, volunteers his time by working at the annual National Cherry Festival event. "It's really fun to interact with the kids," Dingeman, 17, said.
     

  3. 'He's like our angel'
    A local student with Down syndrome has overcome obstacles to turn his dreams into reality
     

  4. Changing minds, one gold medal at a time
    Bernice Lindsey doesn't think her son would be alive today if not for Special Olympics. Because of potential heart defects and other health problems, the average life expectancy of a person with Down syndrome is about 55 years.
     

  5. Father-son bond evident in every gaze
     TUSCALOOSA -- A big, raw-boned Texan accustomed to hard, physi cal labor and sports, he didn't know what to do when he was told his infant son had Down syndrome.
     

  6. Essay: Mothers share experiences, feelings about children with Down syndrome
    She wasn't the prettiest child in the room. They were all the prettiest. Not one of them older than 3. Flawless skin, bright eyes, shy, sweet smiles. But this baby reminded my daughter and me of Lucy, my daughter's little girl.
     

  7. Down syndrome advocate
    It's no wonder Diane Andrews likes coaching both of her children's soccer teams. It involves two of her favorite things: children and the challenge of reaching goals. "Coaching's fun, it's organized chaos," the 37-year-old Mount Pleasant woman said.
     

  8. Pair saddle up for charity ride in France
     TWO amateur cyclists will pedal their way through France next week to raise cash for Down's Syndrome.

Adults With Down Syndrome

 

  1. Pooled trust for disabled eases funding worries
    Patricia Wright, 29, a Jacksonville resident who has Down syndrome, enjoys her job at St. Catherine Laboure Manor, a nursing home where she's worked in food service for eight years.
     
  2. Primsky Serves Up Good Work Ethics
    John Primsky Jr. is a 22-year-old Eagle Scout from Fairfield who has a wide array of accomplishments to his name. Primsky has Down syndrome, but that has not held him back in school, or in the professional world.

     

 

Education

  1. WHEN IS YOUR CHILD WITH A DISABILITY ENTITLED TO COMPENSATORY EDUCATION BECAUSE THE SCHOOL DISTRICT HAS VIOLATED HER RIGHTS? http://www.elc- pa.org/pubs/ downloads/ english/dis- compensatory% 20education% 208-07.pdf
     
  2. Sophie's First Day of School
    Commentator Amy Silverman is sending her daughter Sohpie off to kindergarten with the rest of the kids, which is hard enough for any mom. But Sophie's not like the rest of the kids. She has Down syndrome.
     
  3. The National Down Syndrome Society Celebrates A Legislative Victory August 20, 2008.
The National Down Syndrome Society led a successful effort to expand post-secondary education opportunities for students with intellectual disabilities, and to add the principles of Universal Design for Learning (UDL) into the Higher Education Opportunity Act of 2008.  After many years of effort, 14 extensions and months of intense negotiations, Congress has approved a bill to reauthorize the Higher Education Act.  This bill, which sets federal higher education policy for at least the next five years, was signed by President Bush on August 14.

“With the passage of the Higher Education Act we have unbolted a door to education and brighter futures for students with intellectual disabilities in this century.  The new post-secondary education provisions will make post-secondary education more available and affordable for thousands of students with Down syndrome and other disabilities”, states Steve Riggio of the National Down Syndrome Society Board of Directors. The Riggio family generously donated the funds to create the NDSS Transition and Post-secondary Education Model Program in New Jersey .

Summary of provisions for students with intellectual disabilities

  • Allows students with intellectual disabilities, who are attending programs designed for them in higher education, to be eligible for the first time for Pell Grants, Supplemental Educational Opportunity Grants and the Federal Work-Study Program.
  • Authorizes the development and expansion of high-quality, inclusive model comprehensive transition and post-secondary programs.  
  • Authorizes the establishment of a coordinating center for the new model programs. This center will provide technical assistance, evaluation, and development of recommendations for model accreditation standards as well as outreach and dissemination to postsecondary programs, families and prospective students.

Ensure equal college opportunities for students with disabilities

  • Establishes a national center to provide support services and best practices for colleges, students with disabilities, and their families.
  • Helps colleges recruit, retain, and graduate students with disabilities and improves education materials and facilities.

Universal Design for Learning (UDL)

The Higher Education Opportunity Act contains numerous provisions regarding the preparation of educators in early childhood, elementary, secondary and postsecondary education settings to use the principles of UDL in their instructional practices. UDL provides flexibility in the ways information is presented, in the ways students respond or demonstrate knowledge and skills, and in the ways students are engaged. It also reduces barriers in instruction, provides appropriate accommodations, supports, and challenges, and maintains high achievement expectations for all students.

The recent UDL efforts were led by a task force headed by Ricki Sabia , Associate Director of the National Down Syndrome Society Policy Center, and 24 general education and disability organizations, including the National Down Syndrome Congress. For more information on the Task Force and Universal Design for Learning see www.udl4allstudents.com and www.cast.org.

Thanks for Leadership

The National Down Syndrome Society applauds Congressman Pete Sessions of the 32nd District of Texas, who first introduced a post-secondary provision as an amendment to the Higher Education Act, Senate Health Education Labor and Pensions Committee Chairman Kennedy (D-MA) and Ranking Member Enzi (R-WY), as well as House Education and Labor Committee Chairman Miller (D-CA) and Ranking Member McKeon (R-CA) for their leadership. In addition, Senator Mikulski (D-MD) provided leadership in advancing a bi-partisan bill. 

  1. Universal Design for Learning (UDL) Toolkit

Details about UDL in Higher Education Opportunity Act   BACKGROUND: Universal design for learning (UDL) is an educational framework and set of principles to provide ALL students equal opportunities to learn. Using UDL principles in general education and special education classrooms makes curriculum accessible. Learning is supported; students gain knowledge, skills, and enthusiasm for learning; and their learning is validly assessed.

Using the following three principles, UDL embeds flexibility into the components of the curriculum: goals, teaching methods, instructional materials and assessments.

Provide multiple and flexible methods of presentation to give students various ways of acquiring information and knowledge.

Provide multiple and flexible means of expression to provide students with alternatives for demonstrating what they have learned, and

Provide multiple and flexible means of engagement to tap into learners' interests, challenge them appropriately, and motivate them to learn.

UDL TOOLKIT: The U.S. Department of Education Office of Special Education Programs (OSEP) has published a toolkit of information and resources that will help policymakers, education personnel and parents understand how to implement UDL strategies and practices. This toolkit is available at http://www.osepideasthatwork.org/ and CDs will be available shortly through ED Pubs http://edpubs.ed.gov/

  1. HIGHER EDUCATION OPPORTUNITY ACT: Recently the Higher Education Opportunity Act was passed with numerous provisions regarding the preparation of educators in early childhood, elementary, secondary and postsecondary education settings to use the principles of UDL in their instructional practices. A few key provisions are:
A definition of universal design for learning (the first one in any statute).

A requirement that institutions of higher education and States will publish a report card that contains a description of activities consistent with the principles of universal design for learning that prepare teachers to integrate technology effectively into curricula and instruction.

A requirement in The Teach to Reach grant (which prepares general educators to teach students with disabilities) that the funding must be used to provide certain skills including those related to universal design for learning. There are other grants that specifically list activities related to universal design for learning as a permissible use of the funds.

A document containing all the UDL provisions in the Act is at http://www1.ndss.org/index.php?option=com_docman&task=doc_view&gid=163&Itemid=292

IMPORTANCE: Parents, teachers, school boards, principals, related service providers, State Directors of Special Education and many others agree that UDL is needed to improve instruction and assessment for all students, especially students with disabilities. As a result NDSS has been able to organize a coalition of 24 national general education and disability organizations called the National UDL Task Force. NDSC is also a member of this Task Force.

The fact that UDL is now incorporated in the Higher Education Opportunity Act is an important first step. The Task Force has already recommended UDL provisions for the upcoming reauthorization of NCLB and will recommend provisions for IDEA when its reauthorization process begins. In addition to focusing on legislation, the Task Force is working on numerous communication tools and strategies to aid the implementation of UDL. The UDL Toolkit is part of that communication campaign. The Task Force is grateful to OSEP for being responsive to our request for this toolkit. For more information on the Task Force and UDL see www.udl4allstudents.com and www.cast.org. For more information on this information bulletin, please contact Ricki Sabia at rsabia@ndss.org or Susan Goodman at Susang1961@aol.com.

  1. Up For Reading 2009
    Taking part in Up for Reading is an easy way to raise money for Down Syndrome Education International's work for young people with Down syndrome everywhere. By supporting Up for Reading, nurseries, schools and support groups can also raise money for their own activities. Many famous children's authors are supporting Up for Reading and you have the chance to win some fantastic prizes by getting involved. You can take part in Up for Reading at home, at school or with  friends. Fundraising packs will be available in September but you can register your interest online now. To find out more visit http://www.up-for-reading.org
     
  2. Handwriting Without Tears-The developmentally based, flexible, and engaging Handwriting Without Tears® program is the easiest, most effective way for children to develop good handwriting skills. It has been used successfully by more than 10 million children. http://www.hwtears.com/

Health and Medical News

  1. Autistic kids' round-the-clock care can weaken parents' immune systems
    London, July 20: Round-the-clock caring for kids with developmental disabilities such as autism or Down's syndrome can weaken parents' ability to fight infections, says a new study published in the journal Brain, Behavior, and Immunity
     

  2. Seventy Years Old and Going Strong With Down Syndrome and No Dementia: The Case of 'Mr. C' Causes Major Interest in ...
    Study findings offer hope for increased life expectancy for people with Down syndrome
     

Books

  1. Colin Gets a Chance is an inspirational look into a day in the life of a special needs child and how the acts of a child's peers can have such a significant impact.  Colin has Down syndrome.  Colin Gets a Chance is based on the premise that children with Down syndrome and other special needs have so much to offer society if just given a chance.  It's a book about awareness regarding a delicate subject many parents and teachers find challenging to discuss with their children.  The story centers around Colin's baseball team and takes place on the day of the biggest game of the year.  The bigger story is how Colin's teammates rally behind him to finally give him a chance, which is all Colin's ever wanted since the first day he put on his uniform.  Not only is it a chance to play but, for Colin, it's a chance at life.  Colin Gets a Chance is based on the author's son, Colin Beale.  You'll be cheering for Colin from the time you open the book to the very last word.  The best part about Colin Gets a Chance is that every illustration was completed by individuals with Down syndrome, which exemplifies just what these individuals can do if given a chance.  This book is sure to open up the lines of communication with your children as they learn more about Down syndrome and how much these individuals are really like them; once they're given a chance.  www.colingetsachance.com
     
  2. Up Close by Fiona Yaron-Field-This wonderful book is a moving photographic record and memoir of a mother daughter relationship in the light of an enduring disability from birth through adolescence. Her daughter, Ophir has Down Syndrome. "Up Close" is a remarkable work - meditative, unflinching, searingly honest and loving - a portrait of humanity at its most touching and challenging. http://bunkerhillpublishing.com
     

  3. Cooking by Color: Recipes for Independence -A key component to living healthfully is having recipes that fit your lifestyle. The Cooking by Color cookbook uses photos and color-coding to make the job of cooking easier.

The idea began with recipes designed for people with developmental disabilities preparing to live away from home. However, we found they are useful to anyone who is cooking for two or one or making an after-school snack!

This 48 page book is designed to be easy-to-use and understand. It's a great resource for early readers and people who do best with visual cues. These everyday recipes are developed with portion-control in mind for one or two people, and are quick and healthy too.

Expected October 2008!  http://downsyndromenutrition.com/

Websites

  1. Click here: Kyle's Tree House - Home  New website about Autism.

  2. Down Syndrome Education International- works to improve education for young people with Down syndrome. http://www.downsed.org/
     

  3. Gigi's Playhouse for people with Down syndrome
    Five years ago, a northwest suburban mother of a young child with Down syndrome created a special playhouse for her daughter and friends. They recently opened their fourth location, which has become a popular hangout for families and children with Down syndrome.
     
  4. Down Syndrome Online
    Down Syndrome Online offers a comprehensive, reliable and up-to-date range of information, resources and services for families, practitioners and researchers caring for, supporting and investigating Down syndrome. Down Syndrome Online is published by Down Syndrome Education International, a leading international charity dedicated to advancing the understanding of effective ways of help the development and education of people with Down syndrome. All of the books in the books in the Down Syndrome Issues and Information series education and adult series will be published online over the next few months. This comprehensive series of books covers topics including development, education, reading, memory, social skills, adult living and more. The web site can be found at: http://www.down-syndrome.org/

Movies

  1. Dakota’s Pride- Dakota's Pride is a heartwarming documentary about a father's search for the truth about Down Syndrome. Tough questions are posed to and answered by a noted Harvard Physician, and parents of children with Down Syndrome. The answers are surprising and inspiring. In addition to being informative, this documentary celebrates the successes that have been and can be achieved by individuals with Down Syndrome. Dakota's Pride has been aired on PBS.  The 45 minute DVD version is being offered at a discount to members of support groups.   The discount code is XXG5LVHD and saves 25%. Visit the website www.theglp.org  and click on Dakota’s Pride to access the code. The code will not work on Amazon.com. 

Products

  1. Silver Lining Multimedia, Inc.-Our Picture This... CDs contain thousands of photos that you can use to create photo flash cards, living skills strips, choice boards, token boards, and educational materials to help your child or student learn to communicate, behave and understand the world. All of our photos, except those of places in the community are taken against a plain background. This eliminates any distractors which often impair a child's ability to understand what is being taught or communicated. Our software comes with an easy-to-use program which allows you to create cards of any size, with or without borders and text. Locating the right photo is simple using our search engine which enables you to search by word, partial word, phonetics or foreign languages. http://silverliningmm.com/
     
  2. Organized4Kids I.E.P. Kit-http://www.organized4kids.com/

IEP ToolKit gives you....
- Tips on how to get the most out of IEP meetings
- Charts that help you track your child's progress
- Advice on communicating with teachers and administrators
- Listings of top special-education resources
- Strategies for getting summer and transitional services
- Clear explanations of how advocates can help

Language used to discuss Down syndrome and Myths

The recent media coverage about Down syndrome as a result of the vice presidential candidate, Sarah Palin and her son sparked this learning oppurtunity from NDSS.  (and we all could use a refresher):

Press Release from NDSS and NDSC for proper use of language for Down syndrome-Below are tips for the proper use of language for ‘Down syndrome’. The National Down Syndrome Society and the National Down Syndrome Congress encourages all media to use the below language:

·         Down vs. Down’s. NDSS and NDSC use the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome” as well.

·         People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”

·         Down syndrome is a condition or a syndrome, not a disease.

·         People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.

·         It is clinically acceptable to say “mental retardation,” but you may want to use the more socially acceptable “cognitive disability” or “cognitive impairment.”

 

Down Syndrome Myths and Truths

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.
Truth: Most children with Down syndrome are born to women younger than 35-years-old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities.  People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community.  Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions.  They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize, form ongoing relationships and marry. 

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

 

For more information visit: www.ndss.org or www.ndsccenter.org