Living with Down syndrome
dse (down syndrome education online)
 

The daily lives of individuals with Down syndrome, whatever their age, are influenced by the resources available to them and the attitudes of the people they live with, the people they meet in the community and the people who support or teach them.

 

"My Mum asked me the other day, 'How do you feel about having Down syndrome?' I said, 'Great. I feel good about myself'. She then asked me another question, 'What do you think people should know about Down syndrome?' I thought about that one for a while because there are lots of things to know, but the first thing is that I am a human being, who has the same feelings like everyone else. But the most important thing of all is that I like to be treated like every other member of the community." - Gabrielle Clark, Australia
 

People with Down syndrome are people first

Adults with Down syndrome are adults first, with the same social, emotional and achievement needs as other adults. They wish to live with privacy, independence, friends and partners, and to have a useful role in their community. They should have the same rights as other adults in their community.

Children with Down syndrome are children first, with the same social, emotional and learning needs as other children. They wish to be included in the world of childhood in their community and to learn and play with all the other children in the neighborhood.

Babies with Down syndrome are babies first, with the same needs for love, security, warmth, and stimulation as all babies.

Elderly people with Down syndrome need the same care and support as all other elderly people in the community as they become more frail and their health needs increase.

People first

Individuals with Down syndrome are people first, with the same rights and needs as everyone else.  The development of individuals with Down syndrome is influenced by the quality of care, education, and social experience offered to them, just like all other people. 
  

"My message to all of you is to keep your minds open to the idea that we should be able to make our own choices. If young people with Down syndrome are given opportunities to have many experiences in life, we will be better prepared to make decisions for ourselves. My advice to you is to encourage children and adults with Down syndrome with their dreams and goals and to believe that success comes from believing in ourselves." Mitchell Levitz, USA

People with Down syndrome should not be seen as different but rather as people who happen to have some additional needs. It is so important that this message is emphasized to all who work with children and adults with Down syndrome. They do have some special needs, which must be addressed with effective health care and education, but not in ways that exclude them from the ordinary learning and social opportunities that everyone else benefits from.

"When I was born, and the doctors told my mother I had Down syndrome, they told her I would never be able to do much of anything' I hope that in the future, doctors will tell parents of children who have Down syndrome to give them a chance to encourage them to be whatever they want to be." John Taylor, USA

The development of babies and children with Down syndrome is influenced by the quality of love, care, stimulation, education and social experience provided by their families and communities - just like all other children. If we only offered the child or adult without a disability the social and educational experiences that we have traditionally offered children and adults with Down syndrome, we would stunt development of those non-disabled individuals. It is clear that, until recently, we have been stunting the growth of individuals with Down syndrome in this way.

"I lived with Down syndrome all my life! The living part is great, but changing attitudes is tough going' I visualize a time when my friends and I are capable of choosing the right priorities and have the right skills to maintain employment and also be able to manage our own lives. We need your understanding and skills to do this. We need to be given the chance and time with priority of our dreams." David McFarland, Canada

A brighter future: Achieving more
�         Learning to read and write
�         Attending inclusive schools
�         Finding a partner
�         Participating in the community
�         Working
�         Living independently 

In many countries, the lives of children and adults with Down syndrome are steadily improving. Advances in medical care, better understanding of the developmental and educational needs of children with Down syndrome and increasing social acceptance are providing greater opportunities to grow and learn, and to participate in society.

Many more children are attending inclusive schools with all the other children in the community and many more are learning to read, write and achieve academically than was the case even ten years ago. They are welcome in a wide range of clubs and leisure activities with their non-disabled peers.

Many more adults with Down syndrome are obtaining work, living independently, finding partners and marrying. The support that they need to achieve an ordinary adult life will vary. Some will need only minimal support from friends, neighbors and family (like the rest of the adult community) and some will need the full-time support of workers in disability services.

Over the last ten years, adults with Down syndrome in many countries have become effective advocates for themselves and for all with Down syndrome in their communities, by speaking in public, by lobbying politicians and by pressing for changes in education, improvements in vocational training and work opportunities, and a greater range of supported living options.
 

However, even in the more developed countries, many individuals with Down syndrome and their parents are still fighting for the right to be included in the community and in inclusive educational settings and, in some countries, they are still fighting for the right to have even basic health care and education.

All individuals
�         Health care needs vary
�         Developmental needs vary
�         Educational needs vary
�         Personalities vary
�         Adult support needs vary
�         Forget the stereotypes
�         Down syndrome alone does not determine development
 

Everyone born with Down syndrome has an extra chromosome 21, (all or part of the extra chromosome). However, the effect that this extra genetic material has on an individual's development varies widely. It is not possible to predict the future development of a baby with Down syndrome from the diagnosis alone.

Some children have few additional health problems and some have serious health problems as a result of having Down syndrome. All individuals with Down syndrome experience some degree of learning disability. Some children progress within the lower ability range of the non-disabled children in ordinary schools, some children are more delayed, with moderate to severe learning difficulties, and a minority have additional, multiple difficulties leading to even slower progress. The development of individuals with Down syndrome does not reach a 'ceiling' or 'plateau' in adolescence. Like everyone else, they continue to learn into adult life and to grow as people, if given the opportunity to do so. The so-called 'ceiling' discussed in past literature was almost certainly the result of the lack of medical care and educational and social experience.

Individuals with Down syndrome have different personalities, they are not all placid, cuddly and musical, the stereotype that you may have heard about, which probably reflected the impoverished institutional lives of the past and the behaviors that were encouraged. Some individuals with Down syndrome are confident, extravert and enjoy lively social lives, some are very keen on sports and excel at swimming, gymnastics, water skiing or riding, others are quieter or even shy and prefer quiet pastimes with a few close friends.

Each child or adult with Down syndrome must be considered as an individual and his or her needs determined as an individual, taking account of the knowledge of the possible effects of Down syndrome on development, but not assuming that Down syndrome alone will determine development.

People with Down syndrome are not sufferers

"My name is Gabrielle Clark. I am nearly 19 and I have Down syndrome, I don't suffer from it as many people say, I just have it. I was born that way. My mother told me when I was very little that I had Down syndrome (Probably the day I was born, she's like that you know, always explaining the truth). "I still don't understand completely what it means except that I have an extra chromosome and that I look a bit different and Oh yeah I'm supposed to be a bit slow, (My mum says I've never been slow in my life, but she's my mum and she's prejudiced)." Gabrielle Clark, Australia

Most individuals with Down syndrome and their families do not consider that they suffer from Down syndrome. Individuals with Down syndrome definitely do not like being described as sufferers. Children and adults live with Down syndrome. It has influenced their development but it does not cause daily suffering. Most children and adults with Down syndrome lead happy and ordinary lives, doing much the same things each day as the rest of the non-disabled community.

Labels matter

Words reflect attitudes, beliefs and values and they affect how children feel about themselves. Please remember to say:

 �         'Johnny has Down syndrome, not 'Johnny's a Downs'
 �         'a child with Down syndrome' not 'a Downs child' or even 
        worse, 'a Downs'
 �         'Jenny has Down syndrome' not 'Jenny suffers from 
        Down syndrome'

 The words that we use to describe people convey powerful messages. If people with Down syndrome are people first and their development is not predictable purely on the basis of the diagnosis then it is very important that our everyday language reflects this knowledge.

It is important to always refer to the person first, that is, to always talk about a child with Down syndrome or an adult with Down syndrome if it is necessary to refer to the diagnosis, not a 'Down's child' or even worse 'a Downs' (as in 'We've got a Downs in our school', for example).

Children and adults with Down syndrome hear how we talk about them and it affects their self-image and self-esteem. If you had Down syndrome how would you like to hear yourself and the condition described? Please take a minute to reflect on this question.

The term Down syndrome is in common use because Dr. Langdon Down first described the condition. Traditionally, the term was 'Down's syndrome' for many years but all English speaking countries except the UK have moved to Down syndrome in recent years, reasoning that Langdon Down neither had nor owned the condition so the possessive form is not appropriate.

Copyright � 1996-2011 Down Syndrome Education International.
Down Syndrome Education International is a UK registered charity, number 1062823.

Adults with Down Syndrome

by: Arthur Schoenstadt, MD

People with Down syndrome are living longer, fuller, and richer lives than ever before. With assistance from family and caretakers, many people with this condition have developed the skills required to hold jobs and to live semi-independently. However, in some cases of Down syndrome in adults, people may develop symptoms similar to those seen with Alzheimer's disease. If that happens, intervention will likely be required.

Down syndrome in Adults: An Overview

The life expectancy for people with Down syndrome has increased substantially. In 1929, the average life span of a person with Down syndrome was nine years. Today, it is common for a person with Down syndrome to live to age 50 and beyond.

In addition to living longer, adults with Down syndrome are now living fuller, richer lives than ever before as family members and contributors to their communities. Many people with Down syndrome form meaningful relationships and eventually marry. Now that people with Down syndrome are living longer, the needs of adults with this condition are receiving greater attention. With assistance, many adults with Down syndrome have developed the skills required to hold jobs and to live semi-independently.

Medical Conditions in Adults with Down syndrome

Premature aging is a characteristic of Down syndrome in adults. In addition, dementia or memory loss and impaired judgment, similar to that occurring in patients with Alzheimer's disease, may appear in people with Down syndrome. This condition often occurs when the person is younger than 40 years old. Family members and caretakers must be prepared to intervene if the individual begins to lose the skills required for independent living.

Down Syndrome in the Workplace

The Americans with Disabilities Act (ADA) makes it illegal for an employer of more than 15 individuals to discriminate against qualified individuals in:
         * Application procedures
         * Hiring 
         * Advancement
         * Discharge
         * Compensation
         * Job training
         * Other terms of employment

The ADA requires that an employer provide reasonable accommodation for individuals who are qualified for a position -- including those with Down syndrome. More information about the ADA can be obtained from the Office of Civil Rights of the U.S. Department of Health and Human Services http://www.hhs.gov/ocr/

 March 2009, eMedTV

Adults with Down Syndrome

by Siegfried M. Pueschel 

The editor of this volume, a long-time advocate for people with Down syndrome, has a medical degree, a doctorate in developmental psychology, a law degree, and a masters of public health.  Included in his extensive professional career is directing the Down Syndrome Program at Children's Hospital in Boston.  Twenty-seven chapters of this book cover every topic that applies to adults with Down syndrome.  Three chapters are written by the editor Pueschel; the others are written by other experts including adults with Down syndrome.   This is a very complete, well-organized book which will benefit anyone who cares about an adult with Down syndrome.

Los Angeles Awarded Special Olympics World Games

By: Michelle Diament, Disability Scoop 

For the first time in six years, the Special Olympics World Games will return to the United States in 2015, the organization said Wednesday, September 14, 2011.  Los Angeles will host the 2015 Special Olympics World Games.
 

After a competitive bid process that lasted nearly a year, Los Angeles beat out fellow-finalist South Africa to host the summer games, which are expected to draw over 7,000 athletes and more than half a million visitors.

"In a city full of movie stars and all-stars, our Special Olympics athletes will be the stars of this show as they demonstrate their skills, courage and joy," said Patrick McClenahan, chair of the Los Angeles bid committee. "Los Angeles will provide the world stage necessary to create the awareness that leads to increased acceptance and inclusion of people with intellectual disabilities throughout southern California, the nation and the world."

Special Olympics officials previously cited strong community support and ties to leaders in the sports world as factors supporting the Los Angeles bid.

Alternating winter and summer games are held every two years in locations around the globe. This past summer athletes competed in Athens, Greece and in 2013 South Korea will host winter games.

The world games were last in the United States in 2009 when winter games were held in Boise, Idaho.  Los Angeles hosted the summer games once before in 1972.

Providing training in the areas of:

Autism Spectrum, Supports, Creative Therapy, Mental Health Issues, Advocacy, Community Inclusion, Parent Issues, Professional and Personal Growth, Employment Supports, Leadership and

Supervision

Registration Fees (includes complementary lunch both days):

2-Day Conference: $105 (pre-registration) $125 (on-site)

1-Day Conference: $  85 (pre-registration) $105 (on-site)

Conference coordinated by: Community Partnerships of Idaho, Inc

For more information: http://www.idahopchs.com/
 

 Did you catch the story on FOX 9 about our very own Moses Briley and his parents Bill & Julie Briley?

Go to Fox9Now

to watch the beautiful story! 

Dwayne Ellis with American Family Insurance has chosen TVDSA to receive funds from a Facebook promotion, the month of October.

For each person who "likes" their Facebook page during the month of October, American Family Insurance will donate

$1.00 to TVDSA

It only takes a minute to help raise money for TVDSA!  Go to:

http://www.facebook.

com/DwayneEllisAgency  

Did you miss the September Meeting?  Paul Auger, Gus Olmos and Lucy Olmos reported on the NDSC Conference this year and shared some of the great information they brought home.

Do you have a suggestion for future speakers / presentations that may interest you and other TVDSA members?   

Please send suggestions to: Kelly Zimmerman or Erin Rosenkoetter

October Playgroup Date:

Monday, October 24th:

  10:00am-11:30am at

   Davis' house: 4257 N. Vera

   in Boise, ID 

Happy Birthday to: Sara, Allison, Moses, Katie and Grace!!!

If your  Lil' Buddy has an October or November  birthday, please email Kristie to have your child individually recognized and added to our Birthday list!

Need more information on Lil' Buddies Playgroup?  Please contact Kristie Yerger 

Elementary Age Social Group Coming Soon!

Watch your inbox for details!

Need more information on the Elementary Social Group or want to help organize?  Please contact Kristie Yerger 

The Cool Club and the Adults in Motion (AIM)

will both meet on: 

Saturday, October 15th

at 2:00pm

at Linder Farms

Activity: Fall Fun - Mazes, Hayrides, Pumpkin Patch, Petting Zoo, Pumpkin Slingshot, Laser Tag, Rock Climbing Wall and more!

Come and play as long as you would like!

We are working on a discounted group rate.  Please RSVP to Molly Benton or Freddie Gallas 

The D.A.D.S.

next gathering will be

Tuesday, October 25th

6:30-8:30pm

At the Fuddruckers

 on Eagle Road

For more information contact: Jim Yerger  

Nick Harmon is a 19-year-old self-advocate who lives in Colorado Springs, Colorado, who is taking college classes at the University of Colorado at Colorado Springs (UCCS). Last year, Abbie Kraemer, a friend and schoolmate of Nick's, conducted an independent study which entailed Abbie shadowing Nick on campus to learn about what makes him successful.

The article conveys some of the insights that Abbie gained through her experiences with Nick.

Click on the link, to read more about Nick in "Just Your Typical College Guy," a snapshot into Nick's successful first year attending college.

 Copyright 2011: by PEAK Parent Center, Inc. part of the Fall 2011 SPEAKout Newsletter. www.peakparent.org 

Despite the heat, it's time to start thinking about the Special Olympics Winter Games

High Valley is now recruiting for alpine skiers and snowboarders.

For more information please contact Deborah Havens

emPOWERment 2011

Idaho partnerships conference on Human Services

October 13th & 14th

Boise, ID

 Online Registration
 is now open!

For more information see: Idaho Partnership on Human Services Conference brochure 
 

**************
 

Down Syndrome Education Conference

October 20-22, 2011

Charlotte, North Carolina

Registration now open!

*************

 r.i.s.e 6th Annual Building Futures, Youth with Disabilities Secondary Transition Conference

 October 24th-25th, 2011

Sheraton Portland Airport Hotel

Portland, OR

**************

Pre-Registration now OPEN for the PEAK 2012 Conference on Inclusive Education 

February 9-11, 2012

 Denver Colorado

This course provides simple and practical techniques for parents with kids of all ages to raise responsible kids, have more fun in their role, and easily and immediately change their children's behavior(s).  This is the approach of choice among leading educators, parents and the professional world.

Where: Parent Education

   Center South

   446 Lake Lowell Ave

   Nampa, ID 83686

When: 6:00-8:00pm

Two sessions available:

* Monday nights:

   Nov 7, 17, 21, 28, Dec 5

   & 12th

* Wednesday nights:

   Jan 25, Feb 1, 8, 15, 22

   & 29th

Cost: $15.00 for parent

   handbook

Child care is available but you must reserve a spot before the class begins.

Questions / to enroll, contact: Peggie Tietsort

468-4600 x 1063