World Down Syndrome Day: Finding My Voice in My Community

Web page - March 21 is World Down Syndrome Day, 3/21 in recognition of Trisomy 21

March 21 is World Down Syndrome Day, 3/21 in recognition of Trisomy 21.

March 21. That’s Three twenty-one. These numbers are symbolic of the medical name for Down syndrome: trisomy 21. In humans, each cell normally has 23 pairs of chromosomes, which contain the person’s genetic makeup. In people with Down syndrome, the 21st chromosome has three rather than the usual two copies. The condition of there being three copies is known as trisomy; Down syndrome is the most common trisomy condition (please see our earlier blog post on Trisomy Awareness Month). Such seemingly tiny genetic variations can have a tremendous impact on a person. A prime example is the 23rd chromosome: females have two copies of the X chromosome and males have one X and one Y.

The theme for World Down Syndrome Day this year is #MyVoiceMyCommunity, “enabling people with Down syndrome to speak up, be heard, and influence government policy and action, to be fully included in the community.” In addition, Down Syndrome International will hold a conference on March 21 at the United Nations World Headquarters, New York. The conference and campaign will address four questions:

  • Why it is important for people with Down syndrome and their advocates to speak up and influence policy makers at all levels?
  • What key policies affect the lives of people with Down syndrome? How can these policies ensure full inclusion in society?
  • How can advocates become involved?
  • How can we empower people with Down syndrome, along with those supporting them, to advocate for themselves?

These are important questions we should ask of ourselves in serving our consumers with Down syndrome.

For those interested in following the World Down Syndrome Day Conference at the U.N., the event is being streamed. Information on the speakers, along with important background knowledge, is available on March 21.

Some portraits in Down syndrome

Book Lucky Few - A mom finds joy in adopting a daughter with Down syndrome

Heather Avis is a mom who, with her husband, adopted a little girl with Down Syndrome. In this book, released on WDSD, she tells of the joy she has found.

 

 

 

 

 

 

A German man with Down syndrome who survived the Holocaust is independentWalter, now 63, survived the Nazi genocide against persons with disabilities. Instead, he has found dignity in his independence in the community.

ZEIT Magazine, Nr. 37, 6. September 1996

 

 

 

Screen shot of photo essay documenting the beauty of Down syndrome

The Huffington Post recently featured a photographer who compiled a photo essay depicting the beauty of children with Down syndrome.

 

 

 

 

Charles de Gaulle adores his daughter, Anne with Down syndrome

Former Prime Minister took the time to enjoy a precious moment with his daughter, Anne, who had Down syndrome.

Wheelchair with built-in desk allowing for work and inclusion

This clever wheelchair, with a desk and umbrella, was advertised in an 1886 catalog by George F. Sargent. It is a notable early example of including people with disabilities in the community.

At Advancing Opportunities, we excel in providing residential and respite services to people of with all disabilities, along with advocacy and education services for parents and guardians and assistive technology support. As a leader in the field, we are pleased to share our experience, knowledge, and expertise with the disability community through our social media outlets: Facebook, Twitter, LinkedIn, Google+, YouTube, and Pinterest. In our Disability and Ability Highlights of the Week column, we will select the best of what we found and shared and present them. Please click on the titles with embedded links to find the full article.

 

Please stop by our website, http://advopps.org/, and find out all we have to offer.  In addition, we are specialists in the area of assistive technology and offer a huge array of services; the Assistive Technology Center is New Jersey’s premier source of information and equipment.

 

 

Advancing Opportunities job announcement of the week:

Our northeastern office, in Little Falls, which serves individuals with disabilities and their families throughout Passaic and Essex counties, has opportunities for community support specialists to work one on one with adults at home and in the community. These part-time positions are for as many as 20 hours per week.

 

Please contact Monique Calixte, mcalixte@advopps.org or 973-237-0983. For other career opportunities, please visit us online, at: http://advopps.org/careers/ .

 

 

Advancing Opportunities news:

Mark your calendars for Saturday, April 22, 2017! It’s only a month away. Come and plan to join us for the best barn dance this side of the Mississippi! Very popular last year, we have brought our Hoedown back! Each year, the agency holds several fundraising events. We consider them “friendraising” events as well. Join us and learn more about how you can help provide vital services and supports to children and adults with all types of disabilities.

 

 

Disability in the news (mostly in New Jersey, the population we serve):

The Golden Door International Film Festival holds its 5th Annual Award Ceremony, to the benefit of Jersey City students and promoting Autism awareness.

For the 12th consecutive year, Rutgers University student athletes volunteered at Saturdays in Motion, a free program for children with autism and their families offered at the YMCA in Basking Ridge, NJ.

The month-long, statewide Stages Festival features plays written and performed by artists with disabilities in an effort to showcase new talents. Many of these people cannot speak but are delighted at having the chance to express themselves.

A new report discovers that the media normalizes the murders of people with disabilities.

 

 

For parents of a child with a disability (parenting):

This very thoughtful post on a blog we just discovered expresses how we, parents with a disability, need to meet the challenges and advocate not only ourselves, but now for our children as well. Most important, our most important role as a parent or teacher is that of mentor.

 

 

Special Education:

This article explores the strong positive effects of music for children with ADHD.

 

 

Advocacy and self-advocacy:

A fifth-grade girl advocates for herself with a message for her teacher. She acknowledges she has dyslexia and has trouble reading and spelling. She also states she is smart. Very smart. She continues: “I want to go to college and help people with disabilities. I need your help to get there.”

Two Harvard disability advocates speak out by putting their message to song.

 

 

Assistive technology:

Three very important developments in assistive technology were presented at the IEEE Assistive Technology Conference.

This piece of assistive technology from MIT could be very valuable innovation for the autism community: a wearable device that detects emotion in conversation.

RE-vibe: Anti-distraction wristband: assistive technology for people with ADHD.

 

 

College for students with a disability:

More and more students with disabilities are going to college, especially in New Jersey.

IBM’s Watson applies its prodigious computing ability to making life easier for people on the autism spectrum.

 

 

Employment for people with disabilities:

Microsoft hiring programs offer opportunities for talented individuals with autism.

 

 

Civil rights and accessibility:

Accessibility standards receive a much-needed refreshing.
 
 

 

Informative, positive, noteworthy (or all three!):

When this mom gave birth to a daughter with Down syndrome, she was determined to do the best for her. She then embarked on a mission to help families of children with the condition.

 “Spectrum: A Story of the Mind” goes beyond autism awareness… to autism acceptance.

 

 

The Arts and People with Disabilities

A New Jersey artist with autism showcases his work at a special exhibition.

Music transformed this young man with autism. Now he is out to unlock talent in others.

 

 

People with a disability in the community (disability rights and acceptance; inclusion):

Like anyone else, people with Down syndrome need love, understanding, and the dignity that comes from a decent job. Are these really special needs?

 

 

Disability awareness and appreciation:

The actress Gillian Anderson reveals her struggle with depression.

 

 

Medical news – research:

Researchers have gained new insight into the genetic and neuronal circuit mechanisms that may contribute to impaired sociability in some cases of autism.

A new method uses biochemistry to accurately predict whether a child will develop autism spectrum disorder by measuring the products of metabolic processes.

 

 

Animals and animal therapy:

Shelter dogs battle helped this woman battle bulimia. Now, she is repaying their kindness.

Developmental Disabilities Awareness Month: Life Side by Side

DDAM-Profile-Picture 2017March is Developmental Disabilities Awareness Month. Organized by the National Association of Councils on Developmental Disabilities, the Association of University Centers on Disabilities, and the Disability Rights Network, this event seeks to foster awareness of developmental disabilities, tell stories of people who live with a such disability, and document their lives. The themes for 2017 are “Life Side by Side” and “It Matters to Me.” Twitter posts can be identified by the hashtag  #DDawareness17 

Following the well-publicized horrific abuse of adults with intellectual and disabilities in the late 1970s and through the 1980s, President Reagan in 1987 proclaimed March as Developmental Disabilities Awareness Month. This act was part of the greater trend toward inclusion, embraced in the Individuals with Disabilities Education Act (IDEA) in 1975 and many subsequent amendments.

Developmental Disabilities Awareness Month 2017

According to the U.S. Centers for Disease Control (CDC), “Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas.” The American Association on Intellectual and Developmental Disabilities identifies factors of intelligence and adaptive behavior:

  • Intelligence “involves the ability to reason, plan, solve problems, think abstractly, comprehend complex ideas, learn quickly, and learn from experience.” The IQ test is a commonly used assessment tool, but should never be the sole source. Intelligence can manifest itself in many ways (e.g., memory, musical or artistic ability).
  • Adaptive behavior comprises those practical and social skills of everyday living.
    – Conceptual skills include receptive and expressive language, literacy, handling money, and independent self-direction.
     Social skills include getting along with others, taking responsibility, and having empathy. In addition self-esteem is an important component, especially self-advocacy.
    – Practical skills involve activities of daily living such as eating, dressing, mobility and toileting, and performing basic housekeeping and personal care.

Most important, these limitations usually co-exist with personal strengths, which vary from individual to individual. It should also be noted that the terms “retarded” and “mental retardation,” once commonplace, are no longer considered acceptable.

About 4.6 million Americans, one in six children, has one or more developmental disabilities or other developmental delay.

Our Most Notable and Favorite Disability Articles for the Week Ending March 10, 2017

At Advancing Opportunities, we excel in providing residential and respite services to people of with all disabilities, along with advocacy and education services for parents and guardians and assistive technology support. As a leader in the field, we are pleased to share our experience, knowledge, and expertise with the disability community through our social media outlets: Facebook, Twitter, Google+, LinkedIn, YouTube, and Pinterest. In our Disability and Ability Highlights of the Week column, we will select the best of what we found and shared and present them. Please click on the titles with embedded links to find the full article.

Stanhope Plaster Mill

These beautiful ruins of what was once a plaster mill can be seen in Stanhope, NJ (Sussex County). Photo: Daniel L. Berek

Please stop by our website, http://advopps.org/, and find out all we have to offer.  In addition, we are specialists in the area of assistive technology and offer a huge array of services; the Assistive Technology Center is New Jersey’s premier source of information and equipment.

Advancing Opportunities job announcement of the week:

The Assistant Director of Intake and Behavioral Services shall be responsible for developing and implementing a comprehensive internal and external marketing and intake plan that fulfills Advancing Opportunities residential contract and expands the residential services throughout the state. The Assistant Director of Intake and Behavioral Services promotes the professional development that enhances operational activities and the specialized services provided to learners/clients of Advancing Opportunities. The Assistant Director of Intake and Behavioral Services will be proficient in Behavior Analysis in order to complete professional assessments of those consumers referred for services. Performs other duties as deemed necessary for the agency.

Assistant Director of Intake and Behavioral Services_Page_1

You can also visit us online, at: http://advopps.org/careers/

 

 

Advocacy and self-advocacy:

“Why Inclusivity Is Important, from Obama’s Champion of Change”

 

 

Assistive technology:

Often, our desire to find a new kind of input — something beyond a mouse, trackpad, or game controller — is strictly for novelty’s sake or some kind of intellectual curiosity: a genuinely useful hands-free pointing device.

People with visual impairments could identify scientific images on a computer screen through this piece of STEM-designed assistive technology.

Here’s a handy piece of assistive technology for reading, especially for students with dyslexia

 

 

Civil rights and accessibility:

The denial of organ transplants to people with intellectual disabilities raises important medical ethical questions.

 

 

People with a disability in the community (disability rights and acceptance; inclusion):

Researchers use an advanced-technology driving simulator to compare driving performance of novice drivers with autism with those of novice drivers without autism.

 

 

Disability awareness and appreciation:

When an autistic woman logs back on at Facebook, she is reminded why she left the social media site. Autism is a controversial issue, with people (many who do not fully understand autism) fighting online.

“Changing attitudes toward disabled people is an act of activism that begins with respect.”

 

 

Medical news – research:

It has been believed that people on the spectrum do not get hooked on alcohol or other drugs. New evidence says otherwise.

Although autism appears to be on the rise, there are still no reliable biomarkers. A new study looking at links with cerebrospinal fluid may change this.

Researchers have isolated 18 new genes believed to increase risk for Autism Spectrum Disorder (ASD), a finding that may pave the way for earlier diagnosis.

The World’s largest autism genome database shines new light on many “autisms.”

A Brief Look at the Intersection of Women’s History, Black History, and Disability

The International Women's Day logo - Be bold for change

International Women’s Day 2017: #BeBoldForChange https://www.internationalwomensday.com/

 

 

International Women’s Day and Women’s History Month: In the US and most countries around the world, women with disabilities have faced multiple hardships in the form of reduced access and sometimes outright discrimination in education, housing, and employment – both as women and as people with a disability. In addition, women of color often face a third challenge. A blog writer took a look back on 14 remarkable women of color of the past who have made powerful differences for the present and the future.

As February was Black History Month and March is Women’s History Month, we’ll examine the intersection of the two through the lens of disability. Many notable African American women made lasting contributions despite their disabilities. It is important, however, to “see the person, not the disability.” The late Australian comedienne and disability advocate coined the term inspiration porn in protest that people with disabilities should be objects of inspiration to make non-disabled people feel good.

Social worker and disability advocate Vilissa Thompson in her excellent blog “Ramp Your Voice” has compiled a list of important works and other resources of these individuals.

 

Harriet Tubman black woman disabled disability

Harriet Tubman (1822–1913)

 

 

 

 

 

 

 

 

 

Harriet Tubman (1822–1913), abolitionist known for her work on the Underground Railroad, suffered epileptic seizures. Because of her short stature, she was seen among slave owners as disabled, a low risk of escape.

 

 

Fannie Lou Hamer (1917–1977), Civil Rights Activist black woman disabled with a disability from polio

Fannie Lou Hamer (1917–1977), Civil Rights Activist

 

 

 

 

 

 

 

 

 

 

Fannie Lou Hamer (1917–1977), was a civil rights activist who suffered physical disabilities from childhood polio.

 

 

Maya Angelou (1928–2014), laureate poet

Maya Angelou (1928–2014), was laureate poet and wrote a series of memoirs.

 

 

 

 

 

 

 

 

 

 

Maya Angelou (1928–2014), laureate poet, found a voice in her memoirs and poetry. As a child, she developed selective mutism after a sexual assault.

 

 

Wilma Rudolph (1940–1994) track Olympian with physical disability

Wilma Rudolph (1940–1994), track and field Olympian

 

 

 

 

 

 

 

 

 

 

Wilma Rudolph (1940–1994) overcame childhood paralysis from the polio virus to become a track and field Olympian, the fastest woman in the world.

Honorable mention goes to Johnnie Lacy (1937-2010), an African American woman who from her wheelchair tirelessly advocated for the disability community. She has been recognized by the United African-Asian Abilities Club and the Temple University Disability Studies newspaper. (No copyright free photo of Ms. Lacy is available.)

Autism is a Controversial Issue – People Fighting Online

Autism is a Controversial Issue – People Fighting Online

Wheny who do not fully understand autism) fighting online.
an actually autistic woman logs back on at Facebook, she is reminded why she left the social media site. Autism is a controversial issue, with people (many of whom lack an understanding or experience of autism) fighting online. This is a blog we very much enjoy.

Anonymously Autistic

I left Facebook a while ago because I kept getting sucked into the arguments between parents and Autistic people, Autistic people and the anti-VAX movement, and medical professionals and Autistic people. Today I logged back in and was quickly reminded why I left.

The first thing thing that upsets me is that all of these people think they know more about Autism than Autistic people, as if our first hand experiences are of little or no value. This is often parents but can also be medical professionals and organic health nuts (I eat organic but these people are extreme).

Cure culture fanatics telling us we are sick for wanting to stay Autistic – sick for wanting to stay the way we were born. Parents telling us we don’t understand because we are not like their child (some of us WERE at one point and have worked hard to improve as…

View original post 457 more words

Our Most Notable and Favorite Disability Articles for the Week Ending March 3, 2017

Douglas A-4 Skyhawk on display at veterans park, Ewing, New Jersey NJ

This beautiful A-4B Skyhawk was donated to the township of Ewing in 1998 as the centerpiece of the General Betor Veterans Memorial Park, located just behind the municipal building… and just minutes from our headquarters! Photo: Daniel L. Berek

At Advancing Opportunities, we excel in providing residential and respite services to people of with all disabilities, along with advocacy and education services for parents and guardians and assistive technology support. As a leader in the field, we are pleased to share our experience, knowledge, and expertise with the disability community through our social media outlets: Facebook, Twitter, Google+, LinkedIn, and YouTube. In our Disability and Ability Highlights of the Week column, we will select the best of what we found and shared and present them. Please click on the titles with embedded links to find the full article.

Please stop by our website, http://advopps.org/, and find out all we have to offer.  In addition, we are specialists in the area of assistive technology and offer a huge array of services; the Assistive Technology Center is New Jersey’s premier source of information and equipment.

 

Advancing Opportunities job announcement of the week:

dv1954021

 

 

 

 

 

 

 

Advancing Opportunities has immediate openings for part-time Direct-Support and Family-Support Professionals in residential care programs throughout New Jersey. In March, we will be holding job fairs on the following days, from 10:00 a.m. to 3:00 p.m., as follows:

Wednesday, March 8. Marlboro, NJ. Marlboro Free Public Library, 1 Library Ct., Marlboro, NJ 07746

Thursday, March 9, Parsippany, NJ. Family Support Center of NJ, 322 Rte. 46 W., Ste. 290. Parsippany, NJ 07054

You can also visit us online, at: http://advopps.org/careers/

 

 

Assistive technology:

For the blind, here’s a new actual-reality headset.

These six talented and caring student invented and built a braille assistive technology device to help blind people be more independent.

 

 

Special Education:

News analyis: Are teacher preparation programs in New Jersey failing students with disabilities?

 

 

Informative, positive, noteworthy (or all three!):

An essay in self-acceptance: Why Autism Gives Me the Strength to Fly!

A high school student with cerebral palsy challenges her peers by organizing a conference focusing on ability.

If you have ever struggled with anxiety, these 12 powerful images will seem familiar.

 

 

People with a disability in the community (disability rights and acceptance; inclusion):

An entrepreneurial young man with autism and Down syndrome has started his own popcorn business.

This New Jersey swim team of boys with autism showed their athletic excellence.

 

 

Disability awareness and appreciation:

An actually autistic woman explains why she stims and why it’s important to her.

 

 

The arts and disability (people with talent who have a disability):

Punk prosthetics: the mesmerizing art of living sculpture by Mari Katayama.

 

 

Medical news – research:

This scientific article takes a hard look at whether the rise of autism rates throughout the U.S. comes from more awareness, better diagnosis, or something else.

This article examines the scientific research behind interests among children and adults on the autism spectrum.

Genetic variants linked to autism spectrum disorders (ASD) may have been positively selected during human evolution because they also contribute to enhanced cognition, a new Yale study suggests.

An analysis of whole genomes from more than 5,000 people has unearthed 18 new candidate genes for autism.

Excess brain fluid may forecast autism in babies.

Research on the nature and prevalence of catatonic symptoms in young people with autism is documented.