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.

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. 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.

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.

Down Syndrome Belongs

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

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.

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).


To: robin.marwick@sickkids.ca, ross.hetherington@sickkids.ca,
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. Sincerely Alice Evans aliceevanshome@hotmail.com

Bakery

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.

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!"

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.

Milestones

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!
Felecia


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.