Tuesday, May 22, 2007

Normal Syndrome

When Alfie was born we were so overwhelmed by all the information about his future that we were given - where he might go to school, what his health might be like, and even what his personality might be! I found it very hard to deal with until Matthew wisely pointed out that if we'd been given comparable information when Noah was born we would have been in shock for weeks. Well, my lovely friend Karen has sent me this clipping from the UK Down's Syndrome Association Newsletter (March 2007). It made me laugh out loud:

"I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your foetus is what we call...Normal.
Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, buy you should be aware of what this is likely to mean.

If your foetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to heatlh and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damge themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.

After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.
But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.

They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce.

Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.

Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.

I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure."

By Anon. (In the printed version there's a warning at the top to say that this is intended to make a serious point in an interesting way and is not meant to offend anyone, except possibly a few doctors).

Sunday, May 13, 2007

Happy Mother's Day Felecia!

I met Felecia last Sunday at the NSDSS meeting. She's expecting her second son this week and she knows he's got Down syndrome so she's been finding out all about it. She's got such a positive attitude so I know she'll be fine, but if you are reading this, can you send her a big lovely good luck message through the air to Nova Scotia.

Happy Mother's Day Felecia at this very special time, and good luck with your lovely boys. Here are some pictures of my two, when Alfie was just a few weeks old.

NSDSS Response to the Globe and Mail

I just wanted to share with you the extremely powerful and well written media release by Renate Lindeman, who started up the Nova Scotia Down Syndrome Society, in response to the Globe and Mail's article entitled "Doomed from birth to death":

Down syndrome; Doomed by the Media

The signing of the UN Convention for the rights of people with disabilities by Canada on March 31st, 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.
Today, in Canada, it 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 5th, 2007. ‘….Born with Down syndrome, she is dying slowly from Alzheimer’s disease...’ The reporter then proceeds to report 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 that never develop Alzheimer’s? Seems to me there is plenty to celebrate between birth and death.

It is one thing to educate people on the tragic link between Down syndrome and Alzheimer’s, but the stream of negative information leaves readers in a state of despair. Important, hopeful facts about treatments that slow down 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 reporter 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 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 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 shoved down our throats by ignorant or biased reporters and editors?

After singling out this group of people as ‘doomed’ on the front page of the Globe and Mail, the newspaper then provided a public platform (online comments) on their website for some very extreme ideas.
Much of the language used in the comments should not be reprinted and it suffices to say that some very extreme ideas were being voiced. People with Down syndrome were being referred to as patients, dogs and stuffed animals.
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 responsible for certain conditions. The many new ethical and societal dilemmas’ this creates are not being properly addressed.

Lives and opinions have changed forever due to publication of this article and people are left dealing with the damaging effects long after this reporter’s ‘day of front page fame’ has passed. Families who fought for decades to achieve inclusion and equal rights for their children now have to battle negative attitudes once again. Families might face more barriers in getting the supports for their children they need. Prospective parents whose 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 live 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 on the front page of a leading National newspaper. This is an example of negative, biased and discriminatory journalism. For some excellent reporting on Down syndrome, objective and balanced, I would like to recommend reading the article published in the New York Times of May 9, 2007.

I am the mother of two beautiful children with Down syndrome, who are definitely not doomed, and the president of the Nova Scotia Down Syndrome Society. I can be contacted via www.novascotiadownsyndromesociety.

Renate Lindeman
Mineville, Nova Scotia

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.