Sunday, May 06, 2007

I've been having a real up and down week. Lots of Down syndrome stuff...some things that need a bit of bravery and others that warm my soul. Also, we are moving house so there are boxes everywhere - I'm trying to pack up my feelings a bit too. In particular, it's been a bit hard this week seeing lots of babies who don't have Down syndrome. It's a bit odd and I have to do a little swallow when I see a three month old so easily lift his tummy off the ground, - I'd be thrilled if Alfie could do that. Sometimes it just hits me that Alfie's got to put so much work in to accomplish the little things. Not that he minds. He's so delighted to be able to reach his toys now, and put his arms up for a cuddle, grab the spoon for his supper, and pull a nice big handful of Noah's hair.

Also, I keep getting a little shock when I see how long typical babies legs are! I think "what funny leg extensions they've got". So quickly your idea of 'normal' changes.

There's an article in the Globe and Mail today about Down syndrome and Alzheimers. Don't bother reading it, it's badly written, melodramatic and patronising - the title is 'Doomed from birth to death'. I won't even link to it because it will just take up time you could better spend humming tunes or staring blankly into the fridge. Instead I'm going to post a few of the comments that people have added at the end...

"Renate lindeman from Mineville, Canada writes: I take great offence in the title "Doomed from Birth..." As the mother of two beautiful children with Down syndrome, I know the challenges our family faces; medical, developmental and societal. Some challenges are faced and can be changed by working hard, some challenges cannot be changed and we need to accept. Alzheimer is a devastating disease but medical science is progressing fast and is close to finding answers. As a society we can make many positive changes by not seeing people with Down syndrome as 'being doomed' We are all destined to die; but there is so much to celebrate between birth and death. Being is the answer."

"Kate Chase from Vancouver, Canada writes: As a speech language pathologist who works with many wonderful children with Down syndrome and their families, I find the headline of this article to be completely inappropriate.
There are many interesting points to this story, including the full lives lead by most individuals with Down syndrome, the scientifically fascinating link between DS and Alzheimers, and the need for appropriate care for individuals with DS in their later years. None of these issues require a headline including the word "doomed".
As so many other readers have commented, we will all die at some point - children with DS are no more doomed from birth than those who might have a predisposition to Parkinsons, cancer, or any other disease. Lives may be shortened for any number of reasons, but they are still worth living and far from "doomed"."

"Gary Twyne from Lower Sackville, Canada writes: I am the proud father of two girls. Both of them are beautiful, healthy, vibrant, inspiring, loving and full of hugs - I couldn't picture my life without them. Both of my daughters have Down Syndrome. When my first daughter was born I had a lot to learn about being a dad and about Down Syndrome. My wife was 27 when Claire was born, hardly old, and our stated odds of having a child with Down Syndrome was about 1 in 1000 for our age category. Upon seeing a genetics counselor about our options for a second child we realized that there were very few options, have your child or abort your child! An amnio test would simply let us know if the baby was going to have DS and then we could make a decision based on that. An amnio test has a risk of aborting the fetus on its own (1 in ~300) and the test is hardly reliable (in my opinion), I was appalled to learn just how high the percentage of false positives and false negatives are. After two years we had a second child and she too ended up having DS. Medical science is learning new things to better our lives everyday, and it is obvious to me that this article shows more gains can be made by studying adults with Trisomy 21 & Alzheimer's or any other disease for that matter. Without a doubt these studies will provide further invaluable information in the hopes of creating treatments or cures for all of mankind. Doomed because of our genetics. The hair on my arms stand on end when I think of genetic selection; where does it end? Who picks the genes that should continue? Do we hold the wisdom to determine what genes the world can live without? Should you not be born or live life because of heart disease? Cancer? Addictions? Where would it end? How many people in this world are truely genetically 'normal'? In North America 9 out of every 10 couples abort DS babies, doomed before their lives could even begin. Claire and Elise bring me hope happiness and joy. They are blessings from birth!"

Here's my comment (please note that I'm feeling especially grumpy today): "I found this article, especially the title, really hurtful and upsetting. My nine month old son has Down syndrome, and, yes, I am aware that he has an increased chance of getting Alzheimer's disease, but my father died of a rare heart disease and I am at increased risk of contracting that... other people may be predisposed to breast cancer, or depression, etc, etc. Disease and illness are part of life but we are not 'doomed'! I think that this article is sloppy and badly written. The journalist has played on emotive language for effect, and I find it particularly patronising and insulting. As well as the title, phrases such as 'wet rubbery kisses' are prurient and undignified descriptions of adults who are suffering from Alzheimer's. My grandmother also has this disease and if she has been described in these terms I would be shocked - is it OK because the subject has Down syndrome?

As I put my young son to bed this evening I thought once again about the phrase 'doomed from birth'. It sobered me for a moment but then he gave me such a joyful grin I remembered how lucky I am to have him in my life. Please don't patronise him, or me, with any more pitiful articles."

On a more 'up' note:

I'm very excited about a new project. Four of us from the Nova Scotia Down Syndrome Society met up this week to plan a photography project for young people (well, actually it was five of us but Alfie didn't really contribute anything). We're planning an eight week project for a group of teenagers who have Ds. Together we're going to make artworks about dreams and futures, and hopefully we'll be able to develop the group into a permanent club. I'll write more as it comes together. We've already got a great room to meet in, and some money raised throught the NSDSS, a plan, and eight young people who want to take part...I'm hoping to raise a bit more money and we plan to start in September. It just shows how easily you can make things happen when you work together.


jennifergg said...

Ups and downs, yes, but in this post, I see love and hope and beauty shining through so strongly...

And good luck on the move!

Jodi said...

"Doomed from Birth", Kellen would laugh at that! lol

Anthony said...

I have always thought print journalists were doomed from birth. This merely confirms my views.
You can't use journalism like that for much more than wrapping your chips in.
Chin up.

matthew said...

oh anthony, you've made me blinking hungry for chips in paper now. proper chips too not fries. grrrrrr.
blimey i'll be down the chippy for breakfast on friday at this rate......

have i gone slightly off topic with my very first comment on this blog? where were we?

ooh, and gravy too......

Alice said...

now matthew, tsk tsk. Please keep your chip related musings confined to your own dinner related blog.
love your wife x x x