My Journal - Week 82 (21Mar11)

HAPPY "WORLD DOWN SYNDROME DAY"  3-21

Happy World Down syndrome Day!!  For anyone unaware of why today's date is considered World Ds Day, it's because of the arrangement of the numbers in the date.  Down syndrome or Trisomy 21 means three copies of the 21st chromosome, thus 3-21 or today's date, 21st March (21-03).

Instead of just talking about Hunter specifically, I thought I would post/share a few facts that can be found throughout my blog and are also in my sub blog pages.  Below that I have shared some insights about Hunter.

FACTS ABOUT DOWN SYNDROME

• Down syndrome is the most common chromosomal abnormality occurring 1 in every 800 births. The exact cause is unknown.
• Down syndrome is one of the leading clinical causes of delayed development in the world – it is not related to race, nationality, religion or socio-economic status.
• Approximately 80% of babies with Down syndrome are born to women under 30 years of age.
• 30% - 50% of the individuals with Down syndrome have heart defects and 8% - 12% have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.
• There is wide variation in mental abilities, behaviour and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.
• Individuals with Down syndrome benefit from loving homes, early intervention, education, appropriate medical care and positive public attitudes.
• Individuals with Down syndrome learn at different rates and benefit from inclusive classroom settings just like their peers.
• Increasingly people with Down syndrome are completing high school, gaining job skills, finding meaningful employment, pursuing post-secondary education, and getting married.
• The intentional strengthening of human connections in healthy, inclusive communities that nurture values of interdependence and practice natural forms of mutual support benefits people with Down syndrome as it does every Canadian.
• In adulthood, many persons with Down syndrome hold jobs, live independently and enjoy recreational opportunities in their communities.
• The Canadian Down Syndrome Society is a national non-profit organization dedicated to improving the lives of persons with Down syndrome.
10/24/02 - CDSS

LANGUAGE GUIDELINES
• The correct spelling is Down syndrome. There is no apostrophe “s” (Down). The reason is because in English adding an apostrophe indicates that ownership is involved. Dr. John Langdon Down provided the first formal description of the syndrome, but he did not have Down syndrome and thus no possessive is used.  Also, the “s” in syndrome is not capitalized.
• Use person-first language. Individuals with Down syndrome are people first.  The emphasis should be on the individual, not the disability. For example; a baby/child/adult with Down syndrome, not “Down syndrome” child or “Downs baby”.
• Down syndrome is a chromosomal abnormality that is present at conception.  The term “birth defect” is not correct.
• Down syndrome is a developmental disability. People with Down syndrome usually have mild to moderate intellectual delay. The term mental retardation is considered outdated in Canada and should be avoided. The term mongoloid is considered extremely inappropriate.
• Avoid generalizing people with Down syndrome as “always loving”, “always smiling”, or “perpetually happy”. People with Down syndrome are not all alike.
The diversity of abilities and characteristics among individuals with Down syndrome can be best described as the same for the general population.
• Avoid judgmental terminology. A person with Down syndrome is not “suffering from”, “a victim of”, afflicted with” Down syndrome. Down syndrome is not a disease and these references only diminish a person’s dignity. Suggestions include “living with Down syndrome” or “has a medical condition known as Down syndrome”.
• People with Down syndrome have the same rights as everyone else and should be treated with respect.
CDSS

HE'S HIGH FUNCTIONING!?

A few days ago I touched on a topic that I would like to spend a little more time on now and in the future.  "High functioning" versus "Low Functioning".  I find it really important these days to ensure that in general people understand that Hunter's abilities are not unique or that he's some super Ds genius.  While I am super pleased about his abilities and I don't find it offensive in the least that people think Hunter is very capable and smart, I often feel compelled to explain to those who assume Hunter is so especially smart, that it's just the way it is - more specifically, "he" is!  I believe children are often a product of what we make them.  I do honestly believe that if we set goals, and expect no less than typical outcomes the reality is our children can and will achieve them.  However, it's not to say though, if a parent expects their child to be a genius that they just will be.  I think it is more about not limiting a child due to preconceptions or stereotypes.  I am sure there are parents out there who could argue that they had tried everything, that they pushed and pushed and yet their child isn't "typical" in terms of cognitive/physical development.  So rather then me mislead people by suggesting that everyone who has Ds "doesn't" have delays, I'd rather not be unrealistic by painting insanely dreamy pictures.  What I do want people to know is; that anyone who has Ds shouldn't be limited.  What that will mean in the end - is up to each person.  Just as any person in the general typical population has ranges in abilities, so to does any person with Ds.  Being able to excel cognitively doesn't start with 46 chromosomes as a prerequisite, and at the same time, it doesn't stop with 47 either.  It's interesting how we don't assign ranges to people who have typically arranged chromosomes, yet it's plainly obvious that there are broad differences in IQ in each person - not due to any chromosomal abnormality.  My newest saying and belief is, there should be no ranges when it comes to Down syndrome.
And further, I had to come to realize there is no such thing as "high functioning or low functioning" children with Down syndrome, it's only the caregivers who are either high or low functioning.  The proof has been in the pudding for years.  If you institutionalize a child, just how smart do you think they would be?  If you cultivate and educate a child, what would the answer be then?  Obviously thoughts are changing because what was acceptable 40 years ago (to never bother educating a child with Ds) has changed to realizing that today, people with Down syndrome are graduating from university.  This is not a fluke.  Nor is having a job, marriage and being a productive member of society.  So, as it stands the last pieces to ridding the world of negative stereotypes come with constant positive educating.  When people can make that leap in comprehending simple things (for example - limitations with speech or speaking clearly do not equate to being unable to function), then perhaps we will have a much clearer view of reality and expectations!