Wednesday, May 30, 2007

A wonderful response!

Here is a wonderful response to the article I posted about on May 8 "Doomed from Birth to Death" . It was written by the president of the Nova Scotia Down Syndrome Society and was published as a reply in the Globe and Mail.

Down syndrome: rights doomed by the media

Canada’s signing of the UN convention on the rights of people with disabilities on March 31, 2007, marked another milestone in advancing the rights of people with disabilities. It appears we have come a long way. People with Down syndrome are included in their schools and communities, they get married, enjoy equal-opportunity employment. But beneath all this outward appearance of progress, a different message can be heard.
In Canada, this is not a heartening time to have Down syndrome.
"Doomed from birth to death" was the appalling title of an article published by the Globe and Mail on May 5. "Born with Down syndrome, she is dying slowly from Alzheimer’s disease …" The story then reports sad fact after sad fact, fragments of lives of people with Down syndrome after the onset of Alzheimer’s. What about all the years before Alzheimer’s? What about the thousands of Canadians with Down syndrome leading rich lives, holding meaningful employment and having loving relationships? Finally, what about the people with Down syndrome who never develop Alzheimer’s? Seems to me there is plenty to celebrate between birth and death.
While it is good to educate people on the tragic link between Down syndrome and Alzheimer’s, this stream of sad, negative information leaves readers in a state of despair. Important, hopeful facts about treatments that slow the progress of Alzheimer’s and make it more manageable are ignored. There is no mention of the promising research conducted right here in Canada by Dr. Weaver at Dalhousie University in Halifax (see article "Anniversary of Hope," Nor does it mention the trial conducted by the Down Syndrome Research Foundation in British Columbia on the effects of vitamin E and prevention/delay of early onset of Alzheimer’s.
Instead, the newspaper seems bent on painting a bleak picture, with a headline that is sure to cause sensation and sell many copies. It is unthinkable any other group in Canada could have been singled out as being "doomed from the womb" without causing a riot.
"… The culprit appears to be the extra chromosome that shaped her brain and body in the womb …"
I question whether, if a person with Down syndrome develops Alzheimer’s at age 40, this should be viewed as inevitably "shaped in the womb," or rather as something that develops throughout the lifespan and can be treated. Evidence suggests the development of certain diseases (like Alzheimer’s) in people with Down syndrome is the result of a changed biochemistry due to the presence of the extra chromosome. "… Most people with Down syndrome have an extra copy (of the 21st chromosome), and it carries the instructions for a protein believed to play an important role in Alzheimer’s …"
Further research into the effects of this protein might mean that one day, it is possible to treat, delay or even prevent the early onset of Alzheimer’s (and/or other diseases).
Important and promising research in this and other fields, aimed at improving lives of people with Down syndrome, is being conducted around the world by a few dedicated scientists (Stanford University, Down Syndrome Research Foundations in Canada and United Kingdom, Nutri-Chem’s Kent MacLeod, etc.). Unfortunately, research has been largely ignored by the medical society. Is this because it is believed that Down syndrome will soon no longer be prevalent? Has the ability to identify Down syndrome in pregnancy, so relatively easy and cheap, shifted the whole focus to prevention (by aborting) rather than treating the complications of this syndrome? Has society really decided that lives with Down syndrome are not worth living or are these opinions forced down our throats by the media?
After singling out this group of people as "doomed" on the front page, the Globe and Mail then provided a public platform (online comments) on their website for some very extreme ideas (
The "value" of people with Down syndrome was being questioned over and over, as they were accused of being unproductive and a drain on resources. "Value" for society was only measured in terms of the ability to make money, and no value was placed on care, respect, acceptance or love. If society views people with Down syndrome as a "burden" in these times of abundance, what will happen if we face an economical recession? We cannot allow people with Down syndrome to be the scapegoat.
Medical research advances at a dazzling speed now that genes can be identified as responsible for certain conditions. The many new ethical and societal dilemmas this creates are not being properly addressed.
Lives and opinions may have changed forever due to this article. Families who fought for decades to achieve inclusion and equal rights for their children now may have to battle negative attitudes once again. Families might face more barriers in getting the supports for their children they need. Prospective parents’ decision may be negatively influenced when faced with a pre-natal screening that is positive for Down syndrome. A woman may have to live the rest of her adult life in a group home, because her brother and sister-in-law are reconsidering their decision to offer their home after reading the article.
We cannot allow this vulnerable group of people, some of whom have no verbal skills, to be condemned in the media. I would like to recommend reading the article published in the New York Times of May 9 (
Renate Lindeman is the mother of two children with Down syndrome, and president of the Nova Scotia Down Syndrome Society. She can be contacted by phone at 902-434-0234 or by e-mail at .

Monday, May 28, 2007

Busy busy busy

Sorry I've been such a bad blogger lately. It seems I'm trying to pack four weeks of "to do's" into two. I've been trying to get a bunch of things off my "to do list" and these past two weeks I've been FINALLY making a dent into it. Of course this means I don't have much time for blogging. On the good side...
- I've organized the children's spring/summer clothes and packed away the winter clothes.
- I've shopped and purchased new spring and summer clothes. As I tell Kurtis, "just stop growing already, would you?" Kurtis in particular always seems to need a new wardrobe every season as very little fits him from the previous year. And Ryan seems to have had a big growth spurt since last summer as he needed a lot of new clothes as well.
- We reorganized Kurtis's room as we bought him new bedroom furniture. Finally the child can sleep in a real bed instead of just on a mattress on the floor!
- I've finally got all my Disney pictures printed and into albums
- I've finally got all my other pictures (up to May) printed, although not yet into albums
- I've FINALLY cleaned out all the boys' clothes that were in boxes in the basement. The basement is looking a little emptier - yeah!
- I've organized all the "keepsakes" I've kept from Kurtis and Ryan over the years and now each child has their own "memory" bin. That took a while as I was going back 8 years and I couldn't help but look at the work they produced and read the journals from the babysitters and schools. I'm a bit of a packrat when it comes to sentimental things and memory joggers. I keep calendars, cards, select pieces of schoolwork, tickets to places we visit.
- I'm very proud of this.... I finally figured out how to use the software and I've produced DVD's of all our home digital videos. It took me a while to work my way through it but it's now all done up to April 2007!

I did also manage to have some fun as well... a few lunches with friends, a few dinners with friends, a night at a B&B with Tom while my sister and brother-in-law watched the kids, taking in Shrek 3 with my boys and eating far too much junk...

About the B&B.... apparently Tom and I are NOT B&B people. I felt awkward being in someone's house... a stranger's house... like I should be quiet and always whisper. And apparently I'm also a TV addict as I really missed my TV. Not that we couldn't go without it - we went to a movie that night after a wonderful dinner - but I do miss winding down for 10 minutes before I go to bed! Yup - we're definitely hotel people!

I'm heading in for chemo again tomorrow. Please pray that this one is easy and that it isn't so energy draining. Also pray that there is no anticipatory nausea - it was horrible last time. I hope to be blogging again in a week or so.

Thursday, May 24, 2007

Special Olympics

Ryan had his first Special Olympics Track & Field day yesterday. What a very special day it was (although a bit overwhelming for Ryan and his Mommy!) It was a beautiful warm day and the field was full of Special Olympians, peer supports, teachers and parents. Ryan competed in the Bean Bag Throw, the 50 m dash and the Obstacle Course. (Children age 5-7 participate in "alternative" events, not regular track & field events.) I'm so proud of my little guy - he got 1st in the 50 m dash, 2nd in the bean bag throw and 3rd in the Obstacle course.

Check out the 50 m dash - sorry the video is a bit wobbly at first, but it gets better

Photo Sharing - Upload Video - Video Sharing - Share Photos

Friday, May 11, 2007

Ryan's new bike

Check it out! Ryan LOVES this new bike - so much more freedom!
Now, Ryan can ride a two-wheeler with training wheels. The only problem right now is that he is still lacking in safety awareness - so taking him outside of our deadend street is not a possibility. So now all the boys can go for a bike ride together.

Tuesday, May 08, 2007

What a horrible article...

...from the title to the very last punctuation mark.

Doomed from birth to death

Man, this makes my blood boil. I even debated about posting it on my blog as I did not want to give any more publicity to this article, but in the end, I knew I needed to. People need to know what kind of crap individuals with Down syndrome ae subjected to. Would they dare write an article about Canada's aborignal people being doomed because they are more likely to deal with diabetes? And how dare they consider that someone's life is "doomed" just because they have Down syndrome and "may be" more likely to get Alzheimer's? Apparently they've never met anyone with T21 or even spoken to someone on the phone as they would emphatically tell you quite differently.

As people with T21 are in a very real battle for their very existence right now, we don't need articles like this that only serve to encourage this horrible eugenics movement.

And this comes right on top of a friend letting me know that her child, all of 5 years of age, is being slotted into the "life skills" kindergarten by the school district - without anyone having met this child. (Now, just as an aside, I want to clarify that I am NOT against life skills classes for any child. I truly believe that each child should be able to be in the environment that helps her learn best. In this case, an integrated setting is the best environment for this child). Her school teacher, along with other individuals who know her, all say that a typical classroom would be the best environment for this child. My friend, unfortunately, is likely in for a battle with some bureaucracts who seem to have already made up their mind.

And.. while I'm on a rant... this follows closely another very, very dear friend of mine who is in a battle with her child's school, right here in Ontario, to have EA coverage for a full day when her son goes to grade 1 in September. Their suggestion is that she take him home for part of the day instead. This makes me so angry. Is this child not entitled to a full day of school like everyone else? Is he not entitled to learn? How is he going to maximize his potential when already he's being seen as a "lesser" individual?

So many battles to fight. But fight them we will. We owe it to people with T21 to help them live the best life possible. I firmly believe that we must stand up for those who can't stand up for themselves. Every person deserves to live a full, happy life surrounded by people who love him in a community that supports him. And I will continue to fight for that goal for Ryan.

End of rant.

...but we worked so hard on it!

So Tom and I just finished our first grade 2 project. I hope we get an A+ on it!

Seriously, I couldn't help but joke as Tom is helping Kurtis finish off his project this morning after breakfast as it was due today. Nothing like last minute work! Apparently my child takes after me in that department.

Kurtis had a project to do on any country in the world. And it really wasn't that hard. The teacher laid out exactly what was supposed to be "discussed" on each page, there was only 12 pages (including the cover) and she supplied the booklet it was to be done in. But, we did find it time consuming! Kurtis picked Austria (for those of you who don't know, Tom's parents come from Austria and all his relatives are still there) as his country. We had to go to the library to learn how to find books on your topic. We had to teach him how to look at the books to find answers to the questions the teacher asked - NOT an easy task for an 8 year old boy with a bike just waiting to be ridden. And... "bibiography" is a HUGE word for an 8 year old.... he still can't pronounce it! Overall, though, I was proud of what Kurtis did. It took a lot of willpower on my part not to interfere and tell him it would be MUCH BETTER if he did this instead of that... or added that instead of this.... or said it this way... or drew this picture. My tongue is still sore from being bitten! :) But honestly, my child is not shy and had definite opinions on how things should be done and was quite willing to tell me so.

So... we'd better get an A+ on our project!

Thursday, May 03, 2007

quick post...

I'm on day 3 of chemo so it's a quick entry. I'm extremely exhausted - I have literally been sleeping around the clock. I've been awake this morning now for about 4 hours so it's time to head to bed but I thought I'd update here. Other than fatigue, everything else is OK. See you all in about a week. We're having wonderful weather here so I hope you are too.