Sunday, August 31, 2008


One of the things that stands out most to me, in thinking about Cooper and what I want for him in life, is the issue of acceptance, and equally, respect. For years "retard" has been used as an insult, "retarded" as a description of something stupid, or not right. Of course, now I've got this kiddo who fits the category of "retard" and, in the way of things, my awareness of the impact of the word "retard" has changed.

This post includes an ad by Special Olympics supporting the "Ban the R word" campaign, as well as some much overdue information from the national Down syndrome Organization that is well worth a read.

I know that some of this may seem like just a matter of semantics, but when you think about a group of people for whom acceptance is not a guarantee, semantics matters.

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.

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Wednesday, August 20, 2008


Sorry we've been so out of touch- we did in fact survive the camping trip- although we were exhausted. We had a great time with our friends Sue & Tim and their kids Maggie & baby Graham on San Juan Island- only a bit of rain to keep us stuck inside the Koontz family's HUGE tent! Chris and I had a different strategy for sleeping: we brought two tents- one for Chris and Cooper, and one for Ian and I. That worked out great- everyone slept pretty darn well.

While we were there we met another family who have an adult brother, who's in his 50's, with Down syndrome. They were amazing with Cooper- playing with him, and singing songs, and generally acting as surrogate grandparents. For me, that's been one of the gifts that Cooper has brought to us- we've got this special little hook into so many people's lives. We hear all the stories about the generations of people that have come before Cooper, and we feel so lucky that he's had so many people fighting for his right to a high quality life.

One of my favorite adventures was to the outdoor sculpture garden by Roche Harbor with the Koontz fam. In particular, I loved watching Coop and Maggie tear through the meadows, running from one sculpture to another. Last year, when we were there, he was still bear crawling, so my early morning trip to the garden entailed carrying him in the backpack. I watch him go now, and am astounded at how far he's come since he started walking in January!!