Monday, March 02, 2009


Here's a little video of Alfie now he's a year older....

(I can't remember how to insert it directly into this blog because it's been so long since I've done anything here.... sorry! You can click here)

and a great article I read about a woman whose adult brother has Down syndrome.

Thursday, June 05, 2008

थे Club

I'm not writing so much on this blog anymore because I've been working to set up a permanent social and cultural centre for adults who have special needs/learning disabilities. We've run a cooking club, a theatre club, and have just had our first Dance Party. It's been great fun and extremely rewarding. We had around 100 people come to the dance, and nearly everyone got up to dance straight away. Some of the girls who came to the party want to run a dance club now, so that's next.

Tuesday, March 11, 2008

My baby, right or wrong

An article from yesterday's Guardian...

First person

Rebecca Atkinson has not had her unborn baby tested for Down's syndrome. She knows some people will say that was irresponsible. But how, as a disabled person herself, could she let her child's physical condition decide whether or not it was born?

Monday March 10, 2008
The Guardian

Rebecca Atkinson
Rebecca Atkinson. Photograph: Sarah Lee

You're pregnant. Hurrah! Stand back and await the unsolicited tummy tickles from strangers and remarks that you are "freakin' massive" from old friends. Everyone is free to poke and ask and wonder. Have you had morning sickness? How much weight have you gained? Do you want a boy or a girl?

Questions, questions, questions. But if, like me, you are a disabled mother-to-be, there will be one more question from the well-meaning inquirer. Unlike the others, this may not actually be spoken, but it will be there, teetering on the tip of their tongue, while they wonder nervously whether it would be politically correct to take the plunge. What people really want to ask is: "Could that rogue of a gene that causes your sight loss have tumbled from one generation to the next, afflicting your unborn child with more than just your genetic predisposition for being bad-tempered or having big ears?"The answer is that while it's possible, it's extremely unlikely. I've got Usher syndrome, a rare genetic condition that causes partial deafness from birth and the gradual loss of sight in adulthood due to an eye condition called retinitis pigmentosa. In short, I was born partially deaf and now I'm going blind. Doesn't sound very desirable, does it? To most it's the stuff of nightmares; as one father wrote on his blog after reading about the condition while researching what might have caused his son's deafness: "Usher syndrome gave me the experience that the cliche calls 'chilled to the marrow'. It's a cold start, a real glimpse of horror."

The condition is caused by a recessive gene, which means that for my child to be affected, my partner would have to carry the same gene. Scientists are still in the process of identifying the one or ones thought to cause Usher syndrome, so screening my partner or our unborn baby is currently not an option. But would I screen if I could? And if I could, what would I do with that information? Would I not have children if my partner was found to be a carrier? Would I terminate a pregnancy just because the baby was ... well, like me? Would I have IVF embryo screening to ensure that only "healthy" embryos were implanted?

Unfathomable as it may seem, the answer is no. The thought of having a child with Usher syndrome doesn't fill me with the fear or abhorrence that it does most people. For that perceived "horror", that "cold start", is me. My life. And who is best equipped to cast a judgment - one based on reality rather than perception - about the "quality of life" of a hypothetical unborn baby with Usher syndrome? The doctor? The scientist? The bio-ethicist? Or the person already living that life? While I'm not denying that living with dual sensory loss can be limiting and frustrating, I can't say that it is a life less worthy of existence than another. And to say that I didn't want a child like me would be to negate my worth and send myself to the bottom of the pile.

But this is all hypothetical, right? There are no tests for Usher syndrome and my baby is unlikely to be affected anyway. So what about the here and now? What about the ever-increasing prenatal tests that are available to expectant mothers?

Contraception and legal abortion have long provided women with greater choices over when to have a child; now medical science is fast extending our degree of choice over the type of child we want to have too. Today, prenatal screening for foetal anomalies, neural tube defects, Down's syndrome, sickle cell and thalassemia disorders are offered as standard.

While the idea of choosing the colour of your baby's eyes, gender or personality traits is still largely abhorrent, allowing parents greater choices in the ability of their unborn child, as opposed to any potential disability, seems logical to most. A survey on maternity by the Healthcare Commission found that, of the women who responded, two-thirds opted to screen for Down's syndrome, with rates in some centres as high as 97%. According to the National Down's Syndrome Cytogenetic Register, 94% of women who receive a pre-natal diagnosis of Down's syndrome terminate their pregnancies. If medicine can provide the tools, it seems the majority of us are happy to use them, especially if they can help avoid the "pain and suffering" and "low quality of life" which we so readily equate with disability.

But what if, like me, you know that impairment need not be synonymous with "low quality of life" and that the "pain and suffering" we seek to avoid are largely inflicted not by the physicality of the disability itself but by the negative attitudes of others? Does pre-natal screening still feel like logical scientific progress? Something I am happy to buy into to ensure my first-born is top-notch? Or is it just a covert attempt to purify the human race of folk who don't come up to scratch, veiled in the guise of parental choice?

Abortion has always been a clear-cut issue for me. I've shut the door in the faces of anti-abortion campaigners. I've kicked over the candles of vigil-holders brandishing plastic foetuses in tiny coffins as they heckled women visiting the abortion clinic near my home. I've always been a pro-choice feminist, firm in the belief that reproductive destiny belongs to the individual and choices to terminate should be made free from the value judgment of others. But as my 12-week scan approached I sat with a baby in my belly and a conundrum on my hands. I wondered about the little creature who was causing all that morning retching and midriff stretch. Would I - or indeed should I - take the test being offered for Down's syndrome? And if I did and the result was positive, would I/should I abort?

In my view, a decision to test rests on the premise that a baby with Down's syndrome is at worst something that needs to be caught in the net and disposed of, at best something that needs to be emotionally "prepared for" rather than just accepted as a child that falls on a different part of the spectrum of human life from the next. Once I had decided that, even if it were possible, I wouldn't be willing to test for my own impairment, or terminate a pregnancy on that basis, the decision not to screen my baby for Down's syndrome came easily. After all, if I feel it's wrong to value a "normal" life over and above mine, shouldn't

I extend that belief to all impairments, not just the one I know about because I have it myself?

There: I'd made the "individual choice" about my reproductive destiny that the pro-choicer in me believes in. I had decided there was no way I would terminate my pregnancy on a positive diagnosis, so finding out if the baby has Down's was rendered obsolete. Like the colour of its eyes, hair, or sex, I'll wait until it comes screaming into the world to find out. It was an easy decision to arrive at, but a much harder debate to depart from. For it is here, where pro-choice feminism collides with disability rights, that my once black-and-white views suddenly become grey and I'm left struggling with the question of whether abortion is always justifiable, after all. The very fact that the choice to screen exists meansthat the woman can never win. If you terminate, you are left open to the moral scrutiny of pro-lifers. And if you decline screening, as I have, or continue a pregnancy after a positive diagnosis, you are left wide open to a charge of moral culpability, of burdening society with a disabled child. So who, if anyone, is morally culpable here? For me, the answer lies not in pointing fingers but in questioning the perception of disability as synonymous with undesirability.

It's one thing if a woman is not ready for a baby: I stand by her right to choose in that instance. But is it OK to decide you are ready for a baby, get pregnant by choice and then terminate on the grounds not of your ability to be a parent, but of your desire to be a parent to a particular type of child? As science extends our capabilities to detect more and more conditions in the womb, as it inevitably will, I can't help asking if perhaps we should pause to ask if knowledge is always power. Should we have the right to determine who does and who doesn't get to inhabit the world? For, as my own father put it when I told him I wasn't going to screen his grandchild for Down's syndrome, "I'm so glad there wasn't prenatal screening when we were expecting you." If there had been, perhaps the genetically flawed person, the "glimpse of horror" that is me, would never have existed.

Monday, March 10, 2008

Foxes Academy

Here's some information about a training hotel in England that serves as a hands-on college for people who have intellectual difficulties (including Down syndrome). It's called Foxes Academy.

I'm interested in the courses that they provide. As well as hotel management they teach life skills, stress management, personal safety, sex education, and moving on.

I don't know how long it'll be up, but there's currently a clip of a student at work (well, actually she's getting distracted), on the Channel 4 website.

Saturday, February 23, 2008

Down Syndrome Belongs

The first close up face you see on this video is our Alfie (in the stripey shirt).

Thursday, February 21, 2008

Well, that was quick!

I wrote that letter (below) in the morning and I know about four other people who also wrote. The mis-information on the Toronto Sick Kids website was removed by 2pm. It just goes to show that it is worth writing a personal letter - even a few letters can affect some change.

I do hope that Toronto Sick Kids can now keep the horrendous information on Down syndrome that they were posing as 'fact', off their website. Not wanted to upset parents, I'm not going to go into details about the content of what they had posted - suffice to say that if there was a Disability Discrimination Act in this country, it would have been illegal to publish it.

Wednesday, February 20, 2008

Toronto's Sick, Kids

The Toronto Hospital for Sick Kids has some very upsetting, unbalanced, and in many places, untrue information about Down syndrome on it's A to Z of Health. Many parents have written to them to ask them to take these pages down. Following an article in the Windsor Post, Sick Kids did withdraw the pages for a few days, pending review. They wrote to me saying that they would involve families of people with Down syndrome in the writing of the new pages. However they are now back up - with no changes!

I have written one email to the director in charge of these pages (Ross Hetherington) and their media liaison officer (Robin Marwick) I am now going to find the name of their head of sponsorship, and write to that person, and TD Securities - their main corporate sponsor. The fact that they are purposely posting misinformation is hurtful, damaging, and undermines their reputation as a health care provider for all children.

I can only imagine what I would have thought, if upon finding out about Alfie's diagnosis I had stumbled upon this pile of propaganda rather than the factual and balanced information that the UK Down Syndrome Association provided.

I am shocked that the Canadian Down Syndrome Society have not launched a full-scale campaign against this. Please take the time to email Robin Marwick and Ross Hetherington yourself (see their email addresses below).

Subject: RE: A - Z health

Dear Robin Marwick
I am disgusted that following your review of your pages about Down syndrome your organisation has chosen to repost them with no changes.
Much of the information posted on these pages is not true. It is misleading, is based on personal opinion rather than fact, and denigrates Toronto Sick Kids' reputation as a leader in science and health.

As a parent of a child who has Down syndrome, a child who is not in the least bit frustrated or impatient or angry - and is in fact a great deal more relaxed than my other son, I am furious that you should be printing such offensive material. To what end? I believe that this is part of a policy to encourage people to terminate their pregnancies - a continuation of the type of attitude that for generations directed parents to put their children in institutions.

I am proud to be pro-choice, and believe that by publishing such propaganda, Toronto Sick Kids is limiting that choice for women and all prospective parents.
You should be ashamed to work for such an organisation.

Alice Evans

Wednesday, January 30, 2008


Take a few minutes to watch Yasmin Fedda's award winning documentary Breadmakers. It focuses on Edinburgh's Garvald Bakery, a social enterprise staffed by 12 people with intellectual disabilities:

And here's a better quality version.

Thursday, January 17, 2008

Show some respect

Here is an extremely moving and eloquent speech by a young woman
who I've posted about before - Eleanor Bailey. She wrote this speech
and delivered it at the launch of a photographic exhibition related
to Down syndrome at Oregan Health Sciences University.
I wish I could have been there. Thanks Eleanor, for letting me share
your words.

"My name is Eleanor Bailey. I am very happy to be here today.
People with disabilities like to be treated just like anyone else.
All people should be treated nicely.
Sometimes people with disabilities are not treated very nicely.

Sometimes people just hover over us and say "just sit over there.
You can't be part of the group." They think they're too good for us.
They don't have time to sit down and talk to us.
They don't have time to help us.

I call people like that air heads.

Don't be an air head.

When you talk to me make eye contact.
Pay attention to what I say.
Listen to my words. Show some respect.

If I say I'm sick I am sick. Listen to me.
If I say my tooth hurts, listen to me.
When I speak I demand to be heard. I'm nice to you.
Be nice to me.

I am more than a person with a disability. I am a human being.
And I have feelings just like everyone else.
Speak to my just like you would like to be spoken to.

That's all there is to it.

Free Our People!"

Tuesday, January 15, 2008

John McGinley

A good friend of mine found this article in a magazine he was reading while spending Christmas in Cape Town. It's by actor John McGinley, who is in the comedy series Scrubs. He has a son who has Down syndrome and this is a sweet and succinct story about life not turning out quite how one expects. You can read the whole article in Best Life Magazine.

Monday, January 14, 2008


I had a chat with a friend of mine, via Facebook, about milestones and development, which she said I could share with you. I thought it might be interesting to other new parent's out there - I guess this is something that everyone goes through.

(In the meantime, Alfie has learned to play the piano and we are considering entering him for classical music competitions)

Hello! Long time no see! Happy New Year as well!
I have a question for you about milestones Alfie hit. I'm getting depressed, I know I shouldn't be, about where Eric is in terms of development. I'm on message boards for parents with children with DS and all of there little ones the same age as Eric or younger are all sitting unsupported and getting up on their hands and knees. These kids have DS!! I was okay with him being behind "typical" kids, but now it seems like he's behind his peers as well.
Eric is not sitting (no where near) and starting to get on his knees but not the hands at the same time. I am so depressed. I went to Ian's babybook to see when he sat unsupported as I knew he was late doing this too and he was 7 1/2 months when he did. That's how old Eric is right now and he is not showing any progress at ALL in this area. Blah.
Okay, sorry for the rant but no one else understands. My sister-in-law who has been the best about all of this says not to compare and so not be sad but it is impossible! I knew he was delayed but he seems to be getting more behind everyday. Blah.
Ok, I have to stop or I get you down!!
Hope things are well!

Oh I know how you feel!
But the only way I've found to manage this is to completely ignore milestones. I think Alfie was about 9 months when he first started to sit - it was when he was in hospital so he was between 8 and 10 months - but I really don't keep track of things like that. One reason is that Alfie had very low tone and a very big head and very poor muscle tone in his tummy. The other reason is that it makes me feel wretched.
Eric might also have lower tone than you thought - especially in his stomach. This is no indication of his overall intelligence, or how able he'll be able to manage when he's older. In fact, some of the adults I've met have been very strong physically but not so able verbally, so being able to sit really isn't a good indication of anything.
I have days when I'm so frustrated that Alfie isn't doing anything - responding like I think he should, that he's still chucking his plate on the floor, etc etc, and then a couple of days later he'll completely surprise me by crawling right up the stairs!
It might be that Eric is having a little plateau while he thinks about things and develops another area that isn't sitting. Just keep going and know that he will get there in his own sweet time. And he will get there. And you will be SO PROUD!
Also, I'm concentrating on getting Alfie to do things right, not quickly. He does learn if he is shown something enough times, and I'm so proud that he's crawling - even if it's about 6, 7, 8, months late - because it means that he's strengthening his arms and that will help him in the future.
Keep going with the physio, concentrate on getting Eric to do things right, in his own sweet time, and feel proud of your little boy for just being the cutest little boy in the world.
I feel sorry for all those parents whose baby's are walking by 12 months (like Noah was) - it feels too fast!- enjoy the lovely slow pace that our little ones take and give him a lovely big hug from me.
Alice x x x

Oh Alice, when I woke up this morning and read what you wrote to me I almost cried as you cheered me right up! Some days I have good days, others not so great. I was getting so frustrated. You are so right about teaching him how to do things right, not just fast.
On a happy note - Eric must of sensed I was frustrated and when I calmed down this morning after reading your letter, I went to work on Physio with him. He sat!!! For like two minutes unsupported!! Without falling! He's still pretty hunched over and supporting himself with his arms, but he's finally getting it!!! I am so happy - I posted some pictures. I am so proud of him I cried. By 9 months he should be fully able to sit unsupported the correct way if he keeps this up!! Yeah!
Felecia :)

Phoneme Touch and Say

Right, it's been so long since I've written anything here, I'm a bit embarrassed. In my defense, I've been working quite a lot, and I made a new years resolution to spend more time with my children and less on the computer. Which I'm being quite good about sticking to. Anyway, Felecia pointed out to me that two months with no posts is quite poor really - so here's one for you.

Alfie learned a new sign this week. 'My turn' - or 'me'. He's so pleased with himself for learning it that it's meaning has changed to 'Wow look mummy I can do a sign, look! look! look! meeeee!!!!'. He's just so delighted with himself. He realised how useful it was the other night when he was trying to reach the chocolates - suddenly he had a brainwave and tried the 'my turn' sign - and it worked. Now he's using it all the time. I'll have to try and get a video of it because he's really cute.

Also, we have just started working with speech pathologist Jill Hicks. Mat and I are really excited about this. She uses a sign system to help show children, visually, how sounds are made, and how they are different from each other (well, there's more to it than that - but that's my quick summary). It's called Phoneme Touch and Say - and has emerged from her professional practice and her experience of having a daughter who has Down syndrome herself.

To start with we are working on four sounds. Da, Ma, Oh, Eee. For Daddy, Mummy, NOah and AlfiE. I'm making a picture book with photo's of each of us, and I'm going to hold it up and say the sound very clearly, and then show him the sign for the sound while I say it. The plan is to do it lots of times so he can clearly see that there are different sounds in these words. Obviously, we'll have to do it many times. I'll post up here how it's going.

Also, Jill pointed out something really useful. She made a quick video of me chatting with Alfie and noticed that I ask him chatty questions quite a lot - for example 'would you like some more?' 'how about we put it this way up?' 'would you like the cow?'. Instead of doing this, I'm going to try and say shorter, or one word, sentences - 'more' 'this way' 'cow'. The aim of this is to build up Alfie's vocabulary - give him the meanings of lots of words very clearly rather than lots of extra information that doesn't really matter to him. I'm really pleased with this - it makes perfect sense and I wouldn't have thought to do it myself.

I really think that clear speech is the key to giving Alfie confidence and independence as he grows up. So we are starting now.

Thursday, November 29, 2007

This shouldn't be a one off!

Our young person's art club has been going so well - I love it so much!

This is the first time I've been involved in an art project that I've felt so passionately about - and that I think has made such an incredible difference in people's lives.
It's outrageous that there isn't more in the way of social activity for people who have intellectual disabilities, or other types of specialist need, here in Nova Scotia. It's such a caring community - it really doesn't make sense!

Another parent and I have put together a proposal for a social and learning centre that we hope will provide a permanent solution for the hundreds of people who are currently suffering from social exclusion in this province. In the mean time, check out our Teen Possibles blog to see the difference that a weekly art workshop can make in people's lives.

Wednesday, November 07, 2007

Faces Extinction

Check out this amazing campaign about genetic screening for Down syndrome that Renate Lindeman has put together. I am so impressed that she is pushing forward and encouraging people to discuss this important issue.

The more we talk about the difficult ethics involved with pre-natal genetic testing, the more likely those that carry out these tests will challenge and question their accepted practice. At the moment, the way that screening is handled causes a great deal of unhappiness for too many people - and because the ethics can so easily be linked to a pro-life/pro-choice debate, people steer clear of discussing the complex issues involved.
Let's take this conversation out of the closet!

Panel Discussion on Genetic Testing

I've just watched the first episode of Heroes on the TV. There's something unsettling about watching a fantasy of genetic mutation that leads to extraordinary superpowers for those affected, when in real life you are sitting with someone who lives with the real effects of a genetic mutation - and it doesn't lead to flying or stopping time! Not that he isn't super, but still... - actually I think that Alfie should be on Heroes too.

I was asked to give a parent's perspective at a panel discussion on genetic testing last week. (I felt sick every time I thought about it for weeks, but it turned out quite well in the end).
Here is a news article about the panel discussion, and here is some more information about the campaign that launched it. And, if you've got about 10 minutes... here is what I said:

"While I wouldn’t say I was an expert, I feel that I do have valuable expertise as someone who knows from personal experience about Down syndrome – the condition that is most commonly detected through genetic screening.
I have two sons: Noah who’s nearly 4 – he was born without Down syndrome, and Alfie who’s 1 and a half – who has got Down syndrome.

When I was pregnant, everyone at our hospital was offered the nuchal fold test as a matter of course- regardless of age, and for my friends who had had it, it had been a very scary and stressful time. My husband and I decided to decline the test because both our pregnancies were planned and we felt very strongly that we would love our children, no matter what. We weren’t going to love them less if they were boys or girls, if they had heart problems or diabetes, if they were short or tall, or if they had Down syndrome, - we would love them for themselves. We were pleased that we’d had this discussion when Alfie was born because we knew that we’d already thought about Down syndrome, and it was something that we thought we could cope with. And although it was a shock and we had to take a deep breath, we knew where we both stood and were able to hold hands and go forward.

The issue of genetic screening is sensitive and people worry because it can easily be seen as an anti-abortion issue. But for me, it is a woman’s rights issue, and an issue of disability discrimination.

At present, women are offered genetic screening to detect chromosomal abnormalities with no counseling about what this could mean. They are not prepared for the choices that they may have to make. And most people don’t know anything about Down syndrome. Because everyone is screened and offered a termination for Down’s – the assumption is that it must be a dreadfully debilitating condition that causes extreme pain and hardship for all involved.
The social stigma that surrounds Down syndrome and other genetic conditions, combined with the minefield of the abortion debate, can make this a tricky area for the medical staff who carry out genetic tests. They don’t want to force parents to have babies that might have health problems in the future, and feel the need to highlight the potential risks, partly to protect themselves from legal retribution. But this medicalised approach can mean that potential parents are pressurized - sometimes overtly, into making the decision to terminate, and leaves other parents feeling guilty, foolish and alone for choosing to continue with a pregnancy. It also means that a realistic picture of life with a child who has Down syndrome is rarely given.

I believe that at the moment we, as a society, are not doing right by pregnant women. If women are given clear, unbiaised information, before they have diagnostic tests, and preferably even before they become pregnant, they will be more able to make informed choices that are not rushed or clouded by a fear of the unknown, or ill-informed prejudice.

What about those who regret their choice? Or those who find out that they based their decision on something that was not true? When women are only given information from the medical perspective, and encouraged to have terminations without being able to share the stories of those who actually do the work of parenting children with Down syndrome, from birth to death, they are being denied the right to true choice.

When I was pregnant with Alfie I went for the 21 week scan and it was obvious that something was wrong – the staff got in a fluster and there was lots of too-ing and fro-ing. In the end the consultant was called in and she looked over the scan and said – “it’s all within the range of normal for a boy, but if it wasn’t we’d be talking about Down syndrome, and I know you don’t want to have that conversation”. But the truth was I did want to have a conversation about Down syndrome. If they knew that there was something up with my son I wanted to know about it – but the sort of conversation that I wanted wasn’t just a ‘should I terminate this pregnancy or continue with it’ conversation – I wanted a more rounded discussion than that. What could Down syndrome mean for my family? for my unborn son? for his life and for his future? But that sort of conversation wasn’t offered.

The arguments that I have seen to support mass screening in order to prevent people with Down syndrome from being born are these:

1: It is economically more cost effective for a society to limit the numbers of people who are born with special medical and basic living needs.
2: Down syndrome causes extreme hardship and suffering for the person who has it.
3: Down syndrome places severe hardship on the mother and family of the person who has it.

I believe that all of these arguments are flawed or based on very outdated information.

Firstly, I don’t believe that putting a financial cost on a person’s life is an accurate way to value it. It is simply not possible to say, for certain, how much a person will cost society during his or her lifetime.
We cannot know if someone will get a job, go to prison, have a large carbon footprint, or cause misery to everyone they meet, before they are born.
We don’t encourage terminations for people who are more likely to have breast cancer or diabetes, or those who are likely to lead expensive lives in terms of cost to the environment, or lawlessness, or even just general unpleasantness, so why encourage terminations on the grounds of an intellectual disability? There are ways of life that have a greater cost to society, so to pinpoint Down syndrome in particular, is to make a decision based on prejudice.

Secondly, my experience is that people who have Down syndrome do not live a life of suffering any more than people who don’t have it. Medical treatments mean that more people have a good quality of life and survive heart problems. But prejudice and misunderstanding, and a lack of specifically designed services, can mean that people face more obstacles than they need. I believe that genetic screening actually adds to this prejudice by fueling the fear that Down syndrome is ‘terrible’ – something to be avoided at all costs – something to be stopped before it even begins:

This view negatively affects people throughout their lives, and as fewer people are born with Down syndrome, so fewer services are available, fewer people know someone who has this particular disability, and more prejudices are reinforced.
If fewer people are being born with Ds - this must have an impact of the lives of those who do live with the condition. A friend and I have recently started running a club for teenagers who have Down syndrome, and they say that they get a lot from feeling like they belong and have friends who like the same things as they do. What about when Alfie grows up? This is a particularly mothery thing to be worried about, but surely fewer people being born with Downs syndrome will affect his chances of finding a girlfriend, making friends, feeling that he has something in common with other people, feeling that he is not alone.
In my opinion, genetic screening actually exacerbates suffering and hardship for people with living Down syndrome more than it prevents it. If we as a society want to prevent hardship and suffering for people with intellectual disabilities, we should be investing money, not in genetic screening, but in ‘back to work’ programs, in training for independent living, in support groups and social groups, and in Down syndrome specific health programs.

Thirdly, I too had the fear that life with a child who had a disability would be one of hardship and suffering. It was something I wanted to avoid and something that I was afraid of. But it hasn’t turned out like that. When potential parents are counseled that having a child with a disability will put a severe hardship on their family, they are given misguided information.

It’s quite easy to view parents of children who have Down syndrome as special parents, super parents: the reality is that I’m not a super mother – I’m not someone who lives for her children and has endless patience. If I don’t get a full nights sleep I’m pretty horrible to be around, and I have limited interest in cleaning and changing diapers. I don’t think that I have special skills that set me apart as a remarkable mother, I just try to do a good enough job. And being a mother to Alfie has been a really joyful experience for me. I fell in love with him, just like I did with his brother, and he responds to me with love, cheekiness, and occasional crankiness – just like his brother.
I have been surprised that the similarities to parenting my son Noah, have been more than the differences.
Alfie is by no means an angel, I don’t feel blessed especially, and I don’t have a romantic notion that he is somehow more wonderful than my son who doesn’t have Downs. But he is lovely and cute and funny and fun to be with. He is responsive and stubborn and bossy and curious. He hasn’t been as irritable as typical children can be, and as one friend described her son – he is actually ‘embarrassingly easy’ to parent.
I’ve been more worried about his health than I was with Noah – he’s been more prone to catch colds and last year he had pneumonia that kept him in hospital for two weeks – so it’s not all been plain sailing. But the difficulties that we have faced haven’t made us overly depressed or upset – they haven’t put a severe strain on our family life or our marriage. On a day-to-day level, our biggest problem is trying to stop him climbing the stairs and stealing toys off his brother.
The strains that we have experienced have mostly come from being part of a society that puts more emphasis on preventing people with Down syndrome from being born, than on supporting them to lead independent lives, fully included as part of our community. As fewer children are born, resources are steadily reduced. I am more likely to have to closely parent my son during his adulthood if the supports are not in place to help him live independently - surely this is where the emphasis should be in order to help women like me - rather than on encouraging us to give up our children.
Alfie’s pretty cute at the moment and I know he won’t always be a cuddly baby, so it’s been really good for me to meet teenagers who have Down syndrome – to see what the future holds for us. And I’ve found that everybody is different. The young people who take part in our photography project are individual and similar, fun and reserved, cautious and vivacious and mostly, they are just themselves- just teenagers wanting to hang out with their friends and have a laugh. Alfie will be more like himself than he will be like a person who had Down syndrome. He might have a job, he might fall in love, he may do something completely surprising. The extra chromosone doesn’t define his personality and I don’t’ think it should define his future. I hope that my son is able to grow up in a society that values diversity. A society that doesn’t run in fear from difference. I hope that Alfie is confident and proud of who he is. And I hope that he is not alone."

Thursday, October 18, 2007

Respect to Eleanor Bailey

Here is a speech by Eleanor Bailey. She is an advocate for people who have Down syndrome. When I first started writing this blog I posted an article that I found on the internet - she had written it when she was just 11. Now she is 19 and it's great to see that she is still going strong and standing up for other people who have Down syndrome.

Eleanor Bailey: Buddy Walk Speech
September - 2007

"Good Morning. Welcome to the Buddy Walk.
Thank you for asking me to speak. It is a great pleasure for me to see you all here. It is always
a great pleasure to see so many people with Down syndrome together in one place.
People with Down syndrome all want freedom, just like everybody else!

All people with Down syndrome have the right to be included in every part of the world.
Children with Down syndrome have the right to go with school in a regular classroom with other children.
Adults with Down syndrome have the right to a good job that makes them proud and independent.

People with Down syndrome have the right to marry and have families just like everyone else.
People with Down syndrome have the right to a nice place to live.
People with Down syndrome have the right to good medical care.
People with Down syndrome have the right to transportation to wherever they want to go.
People with Down syndrome want to be happy.
No one belongs in an institution or nursing home.

Here is my message- always be proud. Don't let the fear of striking out keep you from playing
the game!!
Be proud!
Make your own choices!
Make good choices!
Remember disability pride. Be proud of who you are.
Be proud to be a person with Down syndrome.
Thank you for coming today. Have a wonderful celebration.

Free Our People!!
Thank you"

Monday, October 15, 2007

Brothers playing

Alfie and Noah love to play together. Alfie can't take his eyes off his brother.

Friday, October 12, 2007

Thank goodness for Holland!

This is interesting. The Down Syndrome Society in the Nederlands has launched a new poster campaign. The caption reads "I can.... May I? - Down Syndrome is a chronic illness and we are looking for suitable treatment".

This strategy is to renew interest into research into Down syndrome and counteract the prevention of Down syndrome via termination of pregnancy.

The Nederlands Down Syndrome Society is very successful. In Holland a pregnant woman will be given counselling when she recieves a positive diagnosis for Ds and will have to take three weeks of counselling before she makes a decision about the continuation/termination of her pregnancy. The country's termination rate, (I believe - don't quote me) is around 50% rather than in the high 90%'s (for UK, Canada and USA).
Down Syndrome Awareness Day is a big deal in Holland too, with the Queen attending a special ceremony and loads of press coverage.

Hopefully our Down Syndrome Society will follow suit.

Sunday, September 30, 2007

The Possibles 2

Actually, I think it's really healing for me to work with the teenagers who have Ds in the photography club we've put together. Somehow meeting such individual and similar, fun and reserved, cautious and vivacious young people has helped reaffirm to me that Alfie will grow into an individual, an Alfie. He will be himself. And I don't have to worry about that too much. Everyone is so different, but if he's anything like these kids, I will be very proud.

We've got some more pictures up on The Possibles blog.

Thursday, September 27, 2007

The Possibles 1

Our new club, The Possibles, is starting on Saturday so I've been running around with Renee (the other artist) getting everything organised.

One of the young people who is taking part came up with the name 'Teen Possibles' - I think it's great. Other members have rehearsed a hip hop dance, thought up a theme song, and even made a power point presentation! This is all before we actually start! We're all getting quite excited.

Please visit our Possibles blog to find out more.

Saturday, September 08, 2007

Noah is a Hot Potato

Here is a slide show of Noah. He chose the music - it's called 'Hot Potato' by The Wiggles, (thought I'd put that in case you want to buy the album!).

The Developmental Report

RE: McCarthy, Alfie Peter
Unit Number: P0044hosp7
Date of Birth: 29/06/06
HCN: 02834948372
Location Code: Dev
Seen in Clinic: 25/07/07

Alfie and his mother were seen in the Developmental Clinic in followup today. Alfie is now 12 - 1/2 months old and was last seen in May 2007. As you know, he is a little boy with Trisomy 21 and congenital CMV infection. At the time of his original consultation in May, Alfie was unwell and we were unable to complete a developmental assessment.

But now we have done it and are sending this copy to his parents. It will be interesting for them to read this 12 page report about their son and useful for them to have a copy of the information that is used to assess his development. But in addition to this, it will feel a little bit demoralising. They will read through a description of their son that concentrates on all that is 'wrong' with him, from his head, to his toes. Alfie's mother will process this by re-writing the report so that it more accurately describes her son.

On examination of head and neck, Alfie was noted to have a large anterior fontanelle with a relatively flattened occiput. He has his mother's eyes and a little button nose. Examination of the extremities revealed short, broad hands, again like his mothers. There is a gap present between his first and second toes on both feet. On neurologic examination, no facial asymmetry was present and he is undoubtably an extremely handsome child.

All the achievements of which his mother and father are so proud will now be dismissed in short sentences that compare him to a large number of children who do not have Down syndrome, and for all we know, might have nothing special about them at all. On the gross motor subscale Alfie had an equivalent age of 7 to 8 months. On the Self-Help Subscale, Alfie had an age equivalent of 9 months. His cuteness factor was 140% and by parental report his happiness level is equivalent to that of a child who has been born into a loving home and adored, from the very start, by all who have ever met him. His mother and father are, quite rightly, extremely proud and contended to have produced such a unique and charming son. Together with Alfie's older brother Noah, they appear to be a perfect family.

A Doctor, confined within the traditions of a medical model of diagnosis, who has to write these reports for her job, MD FRCPC

c - my blog

Tuesday, August 28, 2007

Pops Reading System

Just a quickie - Alfie's Nan and Grandad have brought me an article about some really brilliant books, a reading system designed for children who have Down syndrome. I don't know if they're available in Canada or the US yet but maybe our local library can get a copy (I've got an in there as Mat's a librarian).
Alfie and Noah are doing great - Alfie can pull himself up to standing!!! Wow! (He's only done it over the side of the bath so far - a bit dangerous - I've got to watch him like a hawk now), And he's started waving. It's just too cute. I'll try and get him to do it on video so I can post it.

Wednesday, August 08, 2007

I've written an article about prenatal testing

Giving accurate, unbiaised, information should be at the heart of prenatal testing
by Alice Evans

Twelve weeks into pregnancy most women will now be offered a scan to see how their baby is doing. A chance to actually see the little bundle of trouble that’s already keeping you up and night, sending you running to the bathroom every morning, and rushing your body with previously unknown levels of hormones. Most women look forward to this scan as an opportunity to reassure themselves that they aren’t imagining it, they really are pregnant, and everything is alright.

But, what happens if it isn’t? Finding out that there might be something ‘wrong’ with your baby is a dreadful, heart stopping, experience, and one that the majority of women are ill-prepared for. Some do not even realise exactly what their fetus is being tested for, and when they are told that there is a chance that their baby has a disability, it’s true to say that the bottom can drop out of their world.

To make matters worse, many medical practitioners do not have the counselling skills needed to help women through this fraught and confusing time. Many complicated decisions need to be made and questions answered - and not always questions that have straightforward answers...’Should I have a test that gives me a conclusive answer and risk miscarriage?’...’How could this ‘anomoly’ affect my babies health?’... ‘How could it affect my child’s life?’... ‘How would it affect my life?’.
With only medical staff to answer these questions - normally staff who have no actual experience of living with a child who has the condition, it is not surprising that 90% of potential parents who are given the diagnosis of Down syndrome choose the most direct and seemingly straightforward option of termination.

The social stigma that surrounds Down syndrome and other genetic conditions, combined with the minefield of the abortion debate, can make this a tricky area for doctors. They don’t want to force parents to have babies that might have health problems in the future, and feel the need to highlight the potential risks to protect themselves from legal retribution. But this medicalized approach can mean that potential parents are pressurized - sometimes overtly, into making the decision to terminate, and leaves other parents feeling guilty, foolish and alone for choosing to continue with a pregnancy. It also means that a realistic picture of life with a child who has Down syndrome is rarely given.

Michael and Felecia Outhouse, new parents who were given a positive result for fetal anomoly last year, found that the information they were given was woefully inadequate:
“ Upon receiving a prenatal diagnosis of Down syndrome I found that health care professionals volunteered little information about raising a child with Ds, yet took great efforts to inform us that termination was not something to feel guilty about. When asked to make this decision you are highly unstable and it is a time when you need the true facts. I shudder to think what my life might be like had we not undertaken our own research and had relied on the information given by the professionals. He is such a lovely, healthy baby and we love him so much! ”

My personal experience as a parent to a child who has Down syndrome, is that nothing could have prepared me for the joys, pride, and laughter of living with my son. I am grateful to the doctors who, when he was born, told me to focus on the possibilities rather than disabilities - their support was crucial at this extremely emotional time. Having seen the stress that many of my friends had been through when undergoing prenatal testing, my husband and I had decided that we would commit to our pregnancies regardless and would therefore forego the nuchal fold translucency tests offered to us. Other women, however, strongly feel the need to know. Action needs to be taken to ensure that this process is not needlessly stressful, and to support, counsel, and prepare potential parents, whether or not they receive a positive diagnosis.

In the UK and USA steps are being taken to ensure that the giving of a diagnosis of Down syndrome, or other genetic condition or ‘anomoly’, is carried out in a clear and value neutral way that supports choices, and does not direct parents to a specific outcome. Systems are being set up to ensure that doctors’ personal viewpoints do not overshadow the giving of a diagnosis. In order to provide parents with a real and informed choice, the same guidelines and legal requirements should be introduced in Canada.

The Nova Scotia Down Syndrome Society have set up a petition calling for a Prenatal and Postnatal Diagnosed Condition Awareness Act.
Such an Act could lead to training for medical staff including training in counselling skills, the use of neutral language, and awareness of negative personal prejudices. Guidelines could be created that are informed by medical practitioners, alongside parents who have chosen to continue a pregnancy, parents who have chosen termination, and adults who have the relevant genetic conditions.

If created, this Act could also lead to awareness campaigns about what pre-natal tests are for, what choices are available to women, and what life with Down syndrome and other genetic conditions means for children, adults and families - including information about the support and resources available. Research into the best ways of communicating complicated information could also be utilised. If women are given clear, unbiaised information, before they have diagnostic tests, and preferably even before they become pregnant, they will be more able to make informed choices that are not rushed or clouded by a fear of the unknown, or ill-informed prejudice.

To find out more about this Act, and to join the campaign to have it introduced in Canada, please visit :
or visit

Thursday, August 02, 2007

Antenatal Results and Choices

My mum told me about this interesting program on the subject of antenatal screening on Woman's Hour on BBC Radio 4. They are introducing new guidance on the screening process in the UK and this program explores the issues in quite an interesting way - it's from a medical standpoint, not a specifically pro-Down syndrome standpoint, but I think it's interesting to see that way that the subject is handled by the mainstream media in Britain.

In the UK there is a charity set up to help people make decisions when they are given a pre-birth diagnosis of an 'abnormality': ARC - Antenatal Results and Choices. It's a non-judgemental system that helps people understand what their choices are, and links them to the support groups that can give them more information. That's in the best case scenario - I, personally, doubt that it's what usually happens.
On the program they are also talking about giving more information about these choices before people get pregnant - with case studies and information available on the internet and through the health service. This makes a lot of sense - trying to think about Down syndrome for the first time when you are being told that you are 'high risk' and you have loads of hormones floating about your system isn't the best time to take in complicated information.

Ps. Please excuse the photo - as this is such a dry post, I thought I'd choose a picture that would spice it up a bit - this is me the day before Alfie was born. ooooh.

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:
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:
as has this Australian site:

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