Wednesday, March 21, 2012

World Down Syndrome Day

I don't suppose there are many readers of this blog who don't know my daughter, Meg, has Down's Syndrome, but some will have forgotten, and some might be new visitors.

Down's Syndrome is also known as Trisomy 21 - this is based on the fact that people with DS have 3 chromosones instead of 2 on the 21st pair. So for the past seven years or so, 21st of March - using the numbers 21 and 3 in the calendar - has been recognised as World Down Syndrome Day.

The idea is to raise awareness and reduce ignorance and discrimination.

So if you would like to know a little more about this condition, then feel free to ask and I'll do my best to enlighten you.

Alternatively, to find the posts I've written about DS over the years, then please click on this sentence.

Down's Syndrome - it's not half as scary as you think...

13 comments:

Pat said...

Big kiss to Meg - unless she has grown out of them:)

Conny said...

We are so darn lucky to have you in "our community" - Keep up the great work and excellent posts!!! Huge Thank you!!!!!! And Happy World Down Syndrome Day to you too!!!! :)

hope said...

I consider Miss Meg to be a joy to behold...she takes the most wonderful photos.

Add a hug from me to the pile for her. One for you parents as well. :)

Theanne said...

Nice to know there's a special day...I'm going to get it on my calendar so I'll remember next year!

I worked with Down Syndrome children and young adults, hands on between 1976 and 1981, as a Volunteer, as a Teacher's Aide and as a Developmental Aide. (Those I worked with had various mental and physical challenges, Downs included.)

Hope Meg has had a Happy Day! Hugs all around to her and her family!

I was driving down the road yesterday and saw a tattooed young man leaning against an electric pole...I wanted to stop the car and take a photo of him! I'm not good about asking to take photos...the one older lady I recently asked to take a photo of looked at me like I had snakes crawling out of my head...but she let me take a photo!
It's on one of my blogs!

Allen Capoferri said...

I need to say I wasn't all that familiar with Down Syndrome. Just from following this blog has gone a long way in raising my awareness and understanding.

Guyana-Gyal said...

I can imagine that in poor countries, where there's not much education, there's discrimination.

I hope that in more 'enlightened' places, there's not much discrimination.

expat@large said...

I have explained to Savmarshmana about why I feel so hypocritical and conflicted on this issue. So just a brief note to say that as a sonographer I once working in a hospital with a fairly strong genetics orientation, and now for a company with special tools and programs for detecting chromosome aberrations. Do I need to explain more? I am personally 100% supportive of you, as I am with my good friend who also has a beautiful and amazing Down Syndrome boy, and twin daughters who are also amazing in how they love and care for him (I am tearing up here so better stop soon.) I wonder if we are treading too close to the eugenics line here. medicine.

expat@large said...

sorry typing this on a tablet -zero cursor control

Kim Ayres said...

Pat - I can't imagine Meg will ever grow out of kisses and hugs :)

Conny - the world of DS is greatly enhanced by your wonderful photography which, as I've said before, does more to promote the normalness of the condition than any number of essays and articles :)

Hope - thank you - I shall pass them on :)

Theanne - can you give me a link to the photo of the older lady? Pity ou didn't ask the guy with the tattoos. I'm sure he'd have been flattered :)

Allen - if anything I've written about DS helps to make it feel less scary and more OK, then that's great :)

Guyana-Gyal - I don't think discrimination is necessarily related to the poverty of a country. It's a sad fact that in the "rich west", on average well over 90% of pregnancies are terminated when DS is diagnosed.

Expat - I think there is a form of eugenics underway when it is stated clearly by some in the medical community as a desire to end up with no DS births. I wrote a short story once a but the desire for the perfect child. YOU can find it here - Termination

Mimi and Tilly said...

Hi Kim, I am horrified to read here in your comments section that well over 90% of pregnancies are terminated when DS is diagnosed. As a former teacher, I have worked with lots of children, all with their own different needs. Every child has their own way of being and their own range of needs. I completely agree with you that there is a form of eugenics underway by some in the medical community who talk of a desire to end up with no DS births. I find it really disturbing. Steve works with children and young adults who are on the autistic spectrum. He spends lots of time talking to community groups, paediatricians and educational establishments, helping them to have a better understanding of autism. Steve and I fundamentally agree on the premise that we are all individuals with our own unique way of being. Some days he is completely frazzled by the lack of empathy and understanding he encounters from the very people who are supposed to understand. Love to Meg. Em :)

Kim Ayres said...

Em - the drive towards some arbitrary notion of "perfection" is shallow and misleading, and will ultimately lead to a blander, more intolerant human race

AlanB said...

Bearded One, I am studying to be a (middle school math) teacher and am taking a class on exceptional students.

I am thus hoping to gain some insight into DS, and thought that you might direct me to a particular post or share a few words of wisdom for future (& current) teachers.

I'm unfamiliar with blogging sites, but if you (or anyone) could take a few minutes to respond, my e-mail is: alan_b25@yahoo.com.

thanks,
Alan B.

Kim Ayres said...

Alan - that's kind of a tricky one to answer. Not being a teacher, I don't know what aspects of DS you might be most interested in finding out about.

While DS is defined by the chromosonal difference on the 21st pair, the way it expresses itself can vary greatly in the individual. For pretty much any characteristic you will find in one person with DS, you will find another where it is absent.

More than anything, the main thing to always remember is the person is an indivdual first, and the condition is secondary. You will be dealing with children with DS, not DS children. And while that might seem a pedantic approach to language, it is very, very significant. Language has the power to shape our thoughts and attitudes. So to frame your approach such that the child comes first and the DS comes 2nd, not the other way round, can make a huge difference.

I'm afraid I can't point you towards any generic teaching methods for children with DS - it's not my speciality. I also suspect, given the wide range of abilities and disabilities of children with DS, that there might not be a specific approach that fits all. Although I am open to being corrected :)

Wishing you all the best in your chosen career :)