Tuesday, July 24, 2007

Please sign this petition for a Canadian Bill

It seems very clear to me that there is an enormous difference between the image of Down syndrome that I see in the media and wider world, and my personal experience. I mean ENORMOUS! I'm sure I'm not alone, and it's not just parents looking on the bright side, or seeing no wrong in their beloved children. I really believe that there is so much ignorance about Down syndrome, and we, as parents, experience it all the time. And before we had our children we were probably the same - I couldn't imagine a baby with Down syndrome, just a man in his twenties with bad brown trousers on.

People are often surprised and shocked by Alfie - he's so sparky, responsive and engaged - and I'm sure it's because we are led to expect so little from people who have Ds. Alfie is by no means extraordinary - I think he's developing pretty typically for someone who has Ds and no major physical problems (apart from constant illnesses!), but nowadays we think of Down syndrome as such a terrible thing - the demon of pregnancies; the curse of the older woman - that it is surprising to us when it just isn't all that bad. We now understand so much more about how people with Down syndrome learn, how health and learning can be improved, and how an independent life can be achieved. Isn't it a paradox that at the same time fewer and fewer are given the chance? - due in large part to prejudice.

My theory is that the way that pre-natal testing is carried out is partly to blame. I was reading a newspaper article last week which included an interview with a woman who had chosen to terminate her pregancy because the baby had Down syndrome. She had just two days to make her decision and only had the input of medical doctors to guide her. The reason she gave was that having a child with Down syndrome would have put her and her family under "severe hardship". Severe hardship?? Some hardship I would say. I've got to know much more about hospitals than I would like, and we are poorer financially than we might otherwise be - but severe? That just isn't my experience.

What if the same woman had been given information from parents who had actually brought up children with Ds? What if she'd been given information from the Down syndrome society and been offered a realistic picture of how life can be with all the lows, and the highs? I wonder if she would have made the same decision?

As more and more people are told that - horror of horrors - they might have the chance of having a baby with Ds - and, however subtly, advised that the only fair thing to do for their families and unborn child, is to terminate, it could equate that more and more people will live with the belief that Ds is a very, very, terrible thing - that people with Ds must be horribly and severely disabled and not really deserving of a life.

I believe that this new bill that is being reintroduced in the States might be the key. If we introduced it in Canada, alongside the wider introduction of pre-natal testing, it would ensure that doctors had to provide more balanced information - by law! This would be a start. This wouldn't take away people's choices, but it could give them a real and informed choice.

The NSDSS has set up a petition to get this fantastic bill introduced in Canada. Please can you sign it and pass this address on to everyone you know - and pass it on to any Canadian bloggers too! Thank you so, so much.

Noelle's blog has lots more information about the bill, as she was responsible for getting it resurrected in the US.

Monday, July 23, 2007

Shifting Perspectives

Renée Forrestall, who is my fellow artist for our young person's arts project, has just sent me a link to this great photography exhibition in London. We could do a Canadian version. Any photographers out there want to get involved?

Come on CBC... get it right

Oh I really hate being bombarded with negative and ignorant stereotypes about Down syndrome all the time. Whether it's an insensitive news item, or a wrong click on youtube, I'm always finding that I have to protect myself from stupid bigots and fools who just don't think before they speak. I hate feeling the need to fire off letters of complaint all the time. It really does happen so often. Why do people think it's OK to say nasty things about people who have Ds? Why are people so ignorant? Oh it makes me so cross.
I tried to ignore this yesterday and just put it in my (very large) box marked "ignore them they just didn't think", but it didn't work and now I've woken up at 3am and found myself writing a complaint to CBC News Sunday. Blooming heck:

Dear CBC News Sunday
As a regular viewer of your show, I was extremely disappointed by your show on Sunday 22 July. In particular, the item about mood disorders featuring an interview with a well known singer/song writer. The points made about mood disorder were very informative and enlightening, however the comparison to Down syndrome was both inappropriate and offensive.
During the program the interviewee compared mood disorder to Down syndrome, explaining that mood disorder was worse because people who had a mood disorder were aware of what they were doing - "unlike someone who had Down syndrome". The footage then cut straight to a clip in which somebody who had a mood disorder talked of eating their own excrement.
Down syndrome is a disability which affects cognitive function and is not a mental illness. People who have Down syndrome are well aware that they have this disability, and many are able to contribute full lives as part of the communities in which they live - working, volunteering, making friends and getting married. Generally, people who have Down syndrome are very skilled socially, and unless they had a mood disorder, would not exhibit anti-social behaviour as described in your piece. To imply that someone with Ds would eat their own excrement - however unintentionally this implication was made - is offensive in the extreme.
Most people who have Down syndrome are unable to make complaints of this kind and it is therefore all the more important that people who work in the media, especially news reporters, are accurate about their portrayal.
I would like to make an official complaint about this matter. I would also invite you to create a positive item about Down syndrome - exploring the ways in which the lives of people who have Ds have changed during the past twenty years. This interview with Anya Souza would be a good place to start: http://www.intellectualdisability.info/values/downs_as.html
I look forward to hearing from you about this matter.


Here is their reply:
Subject: Your e-mail to CRTC - File nbr 354084 - CBC Sunday
Date: Tue, 07 Aug 2007 11:04:50 -0400

Dear Ms Evans,
Thank you for your email to the Canadian Radio-television and Telecommunications Commission regarding a story about mood disorders that aired on the program, CBC News: Sunday on July 22, 2007.
As you know, the CRTC has asked the CBC to respond to your concerns directly.
You wrote that you were offended by a comparison of mood disorders and Down syndrome made by singer Chantal Kreviazuk. Ms Kreviazuk was discussing a short film she wrote and starred in about mood disorders, called 'Pretty Broken.' I have reviewed your letter and the video tape of the interview. With respect, I believe Kreviazuk's intent in this comparison was different from your interpretation of it. First, it is important to note that Kreviazuk, in her attempt to explain her motivation for making this film, drew this comparison, not CBC. The interviews on CBC are not scripted, nor would we wish them to be; it is our responsibility to provide a platform for the expression of ideas, not to put words into the mouths of interview subjects. It is clear that you do not agree with Kreviazuk, but it is not a situation in which CBC was 'inaccurate' in this interview, as you have suggested.
In the interview, Kreviazuk explained that her inspiration for the film came from watching a close friend struggle with a mood disorder before committing suicide. When talking about this friend, she explained that he changed dramatically in the course of six months, to the point that he 'did not recognize himself', that he 'didn't know this guy'. She went on to explain that one of the most painful aspects of a mood disorder is the sufferer's awareness of how he or she has changed in personality. The despair stems from this self-awareness and the knowledge of an inability to resume their previous expected and accustomed mental state on their own. In describing this awareness of the change from an accustomed psychological state to an unwanted and unpredictable one, Kreviazuk said a mood disorder wasn't like Down syndrome, in that a mood disorder sufferer is cognizant of a dramatic change in their behaviour, which is often hurtful to friends and loved ones and which strips the sufferer of his dignity. Having watched the tape, we do not believe her intent was to suggest that people with Down syndrome are neither aware of their disability nor that they are unable to live independent and rich lives. Nor do we believe it was her intention to suggest that people with Down syndrome would engage in the types of anti-social behaviour that many people with mood disorders may act out. Rather, we believe her intention was to stress the sufferer's awareness of the "change" that occurs with a mood disorder.
Again, having reviewed the tape, it is apparent that Kreviazuk did not make her point terribly
clear, and her comparison may not have been as precise as another may have been, but again, this was how she chose at that time to express herself. We are sorry if you found it offensive. CBC welcomes all audience feedback about our programming; without it, we cannot remain
sensitive to the needs and wants of our viewers and listeners. All audience mail is summarized in a report that is circulated weekly among all senior executives, producers and programmers at CBC, including the President and CEO, Robert Rabinovitch.

Sincerely, Denis Andrychuk
Communications Officer
CBC Audience Relations

and here is my response:

Dear Denis Andrychuk
Thank you for your response.
In a way, you have addressed the issues that I brought to your attention, but, I am still very unhappy about the comparison between Down syndrome and mood disorder - in particular:
" In describing this awareness of the change from an accustomed psychological state to an unwanted and unpredictable one, Kreviazuk said a mood disorder wasn't like Down syndrome, in that a mood disorder sufferer is cognizant of a dramatic change in their behaviour, which is often hurtful to friends and loved ones and which strips the sufferer of his dignity."
" Having watched the tape, we do not believe her intent was to suggest that people with Down syndrome are neither aware of their disability nor that they are unable to live independent and rich lives. Nor do we believe it was her intention to suggest that people with Down syndrome would engage in the types of anti-social behaviour that many people with mood disorders may act out"
However, I do think that she is implying that people with Down syndrome are unaware of the effect that their behaviour has on others and that they have no self-awareness. (Or, is she saying that they have no dignity to lose?)
People who have Down syndrome are PEOPLE and they are as individual as you and I.
The comparison made by Ms Kreviazuk is a personal opinion that is based on ignorance of Down syndrome, and prejudice. People who have Down syndrome are aware of their behaviour and are socially skilled. They are not oblivious to the affect that their moods or psychological states have on others. For CBC to provide a platform for these opinions is neglectful and supporting of an offensive stereotype.
In addition, although CBC is not responsible for what people in interviews say, you are responsible for the way in which they are edited. To directly follow such a statement, with an excerpt relating to a very extreme behaviour such as the eating of excrement, supports the previous stereotype.
If someone inadvertently made a racist statement during an interview I believe that you would edit the interview so that the racist statement was omitted and did not detract from the main point of the piece, or cause unnecessary offense to viewers. You would certainly not further inflame and offend by editing the interview so that it was even more incendiary. I ask that you apply the same standards to people who have cognitive disabilities.
I believe that this program negatively affected the human rights of people who have Down syndrome by providing a platform for a bigoted viewpoint and I do not believe that you have addressed this sufficiently in your response to me. I believe that you gave gravitas to an ignorant stereotype by broadcasting it without appropriate context. Further to this, I feel that the editing of the program by CBC further added to the negative stereotype that was suggested by the interviewee.

I look forward to hearing from you again.
Alice Evans

Sunday, July 22, 2007

Noelle's given me an award!

Blogger Reflection Award: This award should make an individual reflect upon five bloggers who have been an encouragement, a source of love, impacted you in some way, and who have provided an example. In other words, five dear bloggers whom, when you reflect upon them, you are filled with a sense of pride and joy...of knowing them and being blessed by them.

I am really chuffed about this! Especially since Noelle has awarded it to me and her blog, Jaden's Journal, is just amazing. She is an extremely dynamic and positive woman who makes things happen. And not just little things. Not only has her blog made me feel excited about the future with my son (her little boy, Jaden, is just too cute for words!), it's also given me practical information on diet and supplements (based on her personal experience) and lessons in 'how not to take it lying down' - which as a new parent, who instinctively doesn't want to tread on any toes, I really appreciate.

About two months ago Noelle decided that the information given to parents-to-be when they were first told that their child had Down syndrome was unacceptable. It was biased and ignorant. And she didn't just moan about it, she made a practical plan to change the situation by law! She has set up a petition, encouraged other parents to share their stories, and now has persuaded U.S. Senators Sam Brownback (R-KS) and Edward Kennedy (D-MA) to reintroduce the Pre-natally and Post-natally Diagnosed Conditions Awareness Act: "legislation which would require that families who receive a diagnosis of Down syndrome or any other condition, pre-natally or up until a year after birth, will be given up-to-date information about the nature of the condition and connection with support services and networks that could offer assistance."
Wow! So, thank you Noelle, you have been an incredible inspiration to me and I'd like to award this straight back to you. Hmmm. I don't think that's allowed though.

The next person who has really inspired me hasn't even got a blog. When Renate Lindeman found that her daughter had Down syndrome, she also took practical action and single-handedly set up the Nova Scotia Down Syndrome Society! There are now over 100 members and I can't express enough how much this group has meant to me over the past year. Practical seminars, workshops for families, a resource library, friendship, and a voice. Renate is driven, dynamic and extremely intelligent. I am extremely grateful to know her and to have her speaking up for my son and other people who have Down syndrome in Canada.
Renate, if you had a blog, I'd pass this award on to you.

The third person who has inspired me is Anya Souza. She makes me hopeful for all the possibilities and amazing things that Alfie will achieve in his lifetime. And reminds me how important it is to be proud of our little one. You can find out more about her here.

I'm not doing very well at finding blogs here am I? One that I really enjoy is India Knight's blog 'Isn't she talking yet?'. As well as writing about her daughter, Nell, she brings together the stories of many different families, providing support and information for people whose children are affected by disability. But India's blog is a professional one, hosted by The Times online, so I don't think it's appropriate to pass this award on to her.

And lastly, in my rubbish list of non-blogs who I can't pass this award on to?

That would be Jodi at Reimer Reason. Her blog is extremely beautiful and I love to read about Sweet Husband and Kellen. She's been having a hard time recently but still thinks of others first. Thank you for sharing your experiences in such a poignant way Jodi.

Well, that's only one real nomination. That's quite pathetic! To be honest I can think of about six other blogs I'd love to put forward but they've already received this award. I'm obviously not a true and proper blogger but I blame cbeebies - and illegal movie downloads. If it wasn't for those pesky time-suckers I'd be able to get on the computer more than once a fortnight and I'd have loads and loads of remarkable and inspirational blogs to share with you. Really I would.

Thursday, July 19, 2007

I've been tagged!

I've been tagged by Jodi at Reimer Reason to share eight random things about me.

1. I met Matthew in on a blind date. A friend set up forty people on blind dates as part of an art project. I had to meet Matthew in a Japanese supermarket in Soho, London. I was instructed to hold a lemon. We were the only couple out of the forty who hit it off.

2. When I was a kid my mum was keen to give my sister and I as many experiences and opportunities as possible. We spent our holidays at religious communes and Greenham Common (an anti-nuclear woman-only peace camp), and went to Buddhist, Hindu, Quaker, Christian Scientist, Catholic, Anglican, Plymouth Brethren, Synagogue and Islamic religious services. My favourite times were singing Simon and Garfunkel with the women and military police at Greenham Common, and going to Hindhu festivals (best sweets and comics!).

3. Matthew insisted that Noah's middle name should be "Harpo" after his favourite Marx brother. I love it now. Noah does too. He called me "Mummy John Harpo" the other day.

4. The strangest day of my life was Princess Diana's funeral. I was in the procession that followed her coffin through the streets of London (she was patron of the gallery I worked at). I will never forget the silence, followed by the wailing, on such a hot and dusty day. So many people. Battenburg cake and police escorts. People asking for our autographs. All the cameras. Princes. Being filmed at a funeral. Very, very strange.

5. My dad died when he was just 33 of a rare heart/lung disease. His illness led to us leaving Canada when I was four years old to live in England. It feels right to be raising my family back in the city that he first emigrated to in the 1960's.

6. Two years ago, Matthew and I won first prize at the Lambeth Country Fair (which is in inner city London - imagine lots of local youth trying to get Shire horses stoned), in the Fruit and Vegetable animal category, for our Olympic Monkeys:

7. I know lots of stories about my ancestors. My great, great, great, great grandfather was an eminent physician, instrumental in the development of codeine. He caught syphilis and had to move from Edinburgh, Scotland, to London, England, to avoid a scandal. In Canada, my great, great grandmother was made an 'Honorary Indian' by Chief Carry a Kettle when she was eight years old and was allowed to witness a young man's coming of age ceremony.

8. I am extremely proud of my gorgeous, sparky family. Here is a photo of Matthew and my sisters, Kate and Mipsie, in my Grandparent's garden on our wedding day.

I tag: Emily Elizabeth at Lovely and Amazing; Michelle at Big Blueberry Eyes; Jo at Sheena Time; and Noelle at Jaden's Journal.

Monday, July 16, 2007

Article for Nursing Mums

I was asked to write this article for the Nursing Mum's group on MSN:

Nursing my baby with Down syndrome

When you have children you open your life to the unknown, the unexpected and the uncontrollable. This was brought home to me with a bang during the first weeks of my son Alfie's life. After months of worrying about how my older son would cope with a new sibling, his birth brought a realm of much more urgent worries to the fore. How long would he be in intensive care? Why wasn't his bone marrow working? Why did he have bruises all over him? When would he be able to breath on his own? Why was he so floppy? What is a bone marrow for that matter?! After much testing it was determined that he had been exposed to CMV when I was pregnant, he had prenatal jaundice, and Down syndrome. Right. Hard swallow. That's OK. I think.

Breastfeeding was the one thing that I could do. Well, not straight away because Alfie was in the ICU wired up like a christmas tree and I'd just had a c-section, but thanks to two marvellous midwives I was soon on my way. One student midwife, bless her, sat with me with a little syringe and pulled off dew drops of colustrum while I hand expressed during the first night (or was it the second - it's all a blur now). And Lizzie, the independent midwife that we'd hired (in the hope that we'd have a home birth), was incredible. She very gently forced me to express milk with a machine every two hours and eat regularly. Because it'd only been 9 months since I'd stopped nursing my older son, the milk was soon coming in. I was so proud of myself!

It's a bit difficult to get ownership of your child when you can't hold them and other people are helping them to live. But I was determined to breastfeed and to be a mother to my baby as soon as I could. After five days of tube feeding I was allowed to nurse him myself. Alfie's low muscle tone meant that he couldn't hold his head up and found it difficult to latch on but I started by getting him to suck on my milky finger and then gradually managed to replace it with my nipple. All the breastfeeding training I'd had with Noah was invaluable - "tummy to mummy", "nose to nipple", "express milk into his mouth to get him started". I also had to ensure that he was fully supported at all times and didn't come unplugged from all the monitors or get suffocated by my breast (with his low muscle tone he wasn't able to pull himself away so easily). We fumbled about a bit, but after a day or two of trying he'd learned what to do and was able to come of the IV.

Feeding Alfie made everything feel alright. Whatever the medical diagnosis he was my baby and he responded to me and loved to eat! We were just mummy and baby and the rest of everything could just get lost.

During the first few weeks at home I fed Alfie every two hours - and he fed for much longer than my other son had - an average feed was about 40 minutes. With Noah I'd fallen asleep during feeds and co-slept but that wasn't an option with Alfie - he had to be held horizontally, high up across my chest, with his head fully supported - which meant me sitting upright and being quite awake. It was inconvenient but I was so delighted to have him home, and to hold him in my arms, I really didn't mind.

CMV is a virus that can lead to deafness, blindness, brain damage and bone marrow problems. I am certain that breastfeeding helped Alfie to recover from this illness in a remarkably short time. The doctors had to retest him twice because they couldn't believe that his viral load had diminished to 1% in just three weeks.
Having Down syndrome means that Alfie's immune system doesn't work as well as it should. During the first year of his life has been in hospital twice more with a virus and pnuemonia. Both times his abilty to nurse has kept him out of the intensive care unit, calmed him and helped him to recover more quickly.

Other mothers I know have expressed and bottle fed their babies breast milk if they were in hospital for lengthy periods. If your baby has medical complications you need them to have the very best nutrition available. Some mums have found that it's taken weeks to get nursing started, but perserverance and a belief that it really is possible to breastfeed their child have meant that they've won through in the end.

Nursing has also helped Alfie to develop muscles in his mouth that will help him learn to speak, it will add a couple of points on to his IQ - for which I'm sure he'll be grateful - and most importantly, it's helped him to grow into a good sized, gorgeous, jumping and squealing one year old boy. He's still nursing well and I plan to continue for as long as possible - one of the benefits of Ds is that your teeth can come through a lot later so I've not had to worry about getting nipped!

The first few weeks of nursing Alfie showed me just what he was capable of, and taught me to have the highest possible expectations of, and for, my son. It also helped me to just be his mum, and to know that I was doing something that was good for him when otherwise I felt so helpless.

The Laleche league have really good information about feeding your baby if s/he has Down Syndrome: http://www.llli.org/FAQ/down.html
as has this Australian site: http://www.breastfeeding.asn.au/bfinfo/down.html

I liked this article too:

Saturday, July 07, 2007

Alfie has started to crawl forwards!!!!

Three days ago Alfie couldn't go forwards at all and now he can get right across the room. Because he has low muscle tone he isn't able to lift his tummy off the ground so, ingeniously, he has devised his own pull and shove method.

Thursday, July 05, 2007

Four generations

Here's Alfie playing with his Great Grannie and Grandpa who were born in 1912 and 1910. When he got bored they poked him with their sticks!

A whole year!!!!

Wow! Alfie is one year old. And such a wriggler. I shouldn't have tried to start writing now because he's sitting on my lap and trying to alternately grab my necklace and pull it off my neck, bite my nose, and bash about on the keyboard.

So, just quickly - he had a 'brain stem' hearing test last week, under general anaesthetic, and was going to have tubes (grommets) fitted at the same time, but the hearing test showed that his hearing is normal!!! I sort of knew that his hearing was OK, but at birth we were told he had a severe hearing loss in his right ear, and at Christmas we were told that he couldn't hear any sound below 15dc. Obviously we were worried, and even more so because the risk of not developing speech is increased if you have both deafness and Down syndrome, but hey - that's one more thing to cross off our list of 'terrible-things-that-happen-if-you-have-an-extra-chromosone'. It also shows that sometimes you need to trust your instinct as a parent and believe what you see rather than what you are told. Interestingly, the normal hearing tests didn't work on Alfie because they are designed for people who have wider ear canals. I wonder if other babies with Ds have had this false negative test result?
Anyway, what a wonderful birthday present (for us - Alfie obviously could hear anyway so having a general anaesthetic probably wasn't the best way for him to celebrate). The consultant decided to be conservative and not fit the tubes, as he didn't have any fluid on his ears, which I'm also pleased about as I'd read mixed reviews on their efficacy.

Also, Alfie has got a tooth. And he's crawling backwards so fast that if you leave the living room for a minute he gets stuck under the sofa. And he has the most gorgeous, melting, joyful smile. We are very, very, very proud of our lovely one year old boy.