Blooming Heck: We're in hospital!

Poor little Alfie has pneumonia and influenza and we've been in hospital for the last 10 days - feels like an eternity! He's getting much better now but it was a bit dicey for a while. We've been living as if in a dream, just watching time pass on the clock but not really believing it. Day, bleep, night, bleep bleep, doctors rounds, bleep bleep bleep. This sort of thing is very hard on your heart. I need a sigh machine that can suck all my sighs out and replace them with something light and fluffy - giggles maybe.

Alfie's still on oxygen but they are finally able to reduce the amount and bless him, he's starting to sit up on his own. He's so smiley about it all - the rest of us are shattered though. His breathing was further complicated by sleep apnea, - I think his tongue is a bit big for his mouth and when he sleeps on his back it blocks his airway. Bleep bleep bleep bleep. His sats monitor is going off all the time. And I keep waking to find a room full of nurses and doctors. Bleep. With Alfie grinning at their funny masks. Bleep bleep.

And we bought a house last week too! I've only seen it once but it seemed fine and we couldn't get too worried about it with everything else that was going on. I think that was the most relaxed real estate purchase ever made. "Is it standing upright? Nice colour? OK I'm sure it will be fine".

We might be in here for another week or so, but I'm crossing my fingers it'll only be a couple of days. This hospital (IWK Children's Hospital) is great - all the staff have been exceptional - professional, friendly, on the case, interested, energetic, and kind. And talking of exceptional - my friend Susan - who has FIVE children of her own, including two who have special needs, volunteered to come and stay the night so I could have some time off!!!! How lovely is that! I am so touched. She's coming this evening for a few hours and I can't wait to get home to cook and put Noah to bed, and just chill out with Mat for a bit.

It's strange having the same light-hearted conversations over and over again ("what brought you to Canada?" "oh you've got some accent") with all the medical staff, and then bizarrely chirpy conversations with parents who are going through the most difficult times of their lives. ("how long have you been here?": "oh about three months" "have you got any other children?": "none that are alive") The contrast is too great sometimes, especially when you don't see anyone you know all day.

Alfie and Noah's Nan and Grandad are coming tomorrow! Yeh! I am so excited! Last time we saw them Alfie had nasal prongs to help him breath and was in hospital, and the time before that he was in intensive care. What bad luck that it's happened again. Well, at least things are on the up. I'll write more when we get home. Bleep bleep bleep bleep bleep.

Our boys are growing up so fast!

Wow! Looking at these pictures it really strikes me how quickly Noah and Alfie are changing! Alfie couldn't really hold his head up two months ago - and now look at him! And Noah is getting ready to hit the road as a Canadian cowboy. He's been talking with a pseudo-Canadian accent all day today "I ceen't fix it" "I'll pud it in my beeg" mixed in with English "mummy"'s. He's not got it quite right yet, probably because he's learnt it from Bob the Builder (USA version), Elmo, and various 3 year olds. Bless. Alfie is eight months old next month. And Noah is three and a quarter.

Alfie has some carrot

Hooray! I have finally found the camera cable so I can download the pictures that have been stacking up since Christmas. Here is Alfie having his first solid food.

Working with Doctors

My friend has been having a hard time because her child, who has Down Syndrome, has not been well. Her behaviour changed significantly, she stopped communicating, and was less coherent. This obviously has caused a great deal of worry for her parents - further compounded by the fact that the doctors, for over a year, could not see past the diagnosis of Down Syndrome. Even though her social skills started to decline, the doctors were still saying that this was 'normal' for children with DS (social skills are usually very strong in children who have DS). After a long struggle, and by engaging a naturopathic doctor, they have managed to find a treatment that is finally benefiting their daughter - a combination of anti-fungal and pro-biotic medicines.

One of the things that strikes me is that ensuring the best medical treatment for your children can be difficult at the best of times, but when they have DS it's a minefield. Occasionally doctors fail to see symptoms that would be obvious to them in typical children. Sometimes the Down Syndrome diagnosis can throw them off their game. This is just a little example, but when Alfie was a month old he had an eye infection and the doctor at the hospital wrote the diagnosis 'Down Syndrome' on his prescription - as if a short course of anti-biotics was going to treat his extra chromosone! She was so caught up with the Trisomy 21 that she failed to accurately fill out a basic form.

Another issue is communication - a friend of mine who had an intellectual disability was treated in hospital for a bowel cancer operation, and one day when I was visiting, a doctor asked him if he had "passed wind". There was no way that David would understand such a euphemistic question - but when he answered 'yes' the doctor ticked a box on his form. I had to point out that he would say "yes" to pretty much any question he didn't understand - but it didn't make much difference. Unfortunately, David's operation had gone wrong and it wasn't picked up until it was too late.

So my questions are these:
How do you persuade a doctor that it isn't 'just Down Syndrome' that's the problem?
How do you come across as a knowledgable adult rather than an over-anxious parent?
How can we teach medical practitioners to communicate effectively with our children as they grow to adulthood?

I don't have any firm answers yet, but these are my initial ideas:
If you film your child regularly, you can show medics how you expect him to behave when he is healthy and well.
If you type up notes and print copies out for doctors they seem to be able to understand better than if you tell them things.
If you keep a log when illness occurs (again, typed), you can accurately answer questions about dates and times, etc.
Take a notepad and pen along to doctors appointments and obviously write down what they say. Then use the long words again when you are talking to them.
Tell your doctor if s/he uses language that offends, or does not treat you as s/he should. In my experience doctors appreciate it if you talk to them first about their behaviour before reporting above their heads. If all else fails, don't be afraid to make a complaint if you feel it will improve circumstances for other patients who have intellectual disabilities.
Tell your doctor if s/he does something right. People do their jobs better when they get positive feedback.
We need to get involved with the training of new doctors and encourage placements and interviews with medical staff so they get to know children who have DS at the very beginning of their careers.

Do you have any more tips or ideas?
I've found this excellent information produced by the UK Down Syndrome Association in conjunction with St Georges Hospital. It includes tips for diagnosing illness with people who have learning disabilities. Is there anything similar in the USA or Canada?

I also need to say how fantastic all the medical staff at the Royal Surrey Hospital were when Alfie was born. Really truly wonderful. So professional and supportive. They talked about 'possibilities' rather than 'disabilities' and gently pointed us in the right direction when things were difficult. It meant so much to us to have professionals who really knew their stuff, working with us to help our little baby. The intensive care staff at the special baby care unit even suggested that Mat and I go out for a meal while they baby-sat! I am genuinely grateful for the incredible support we've received. It's made all the difference to Matthew and myself.

Nuchal Fold Testing

I've been chatting with another blogger parent, Catherine, about the new pre-natal testing that's being introduced across the board for all pregnant women in the USA and Canada. It's been used for all age groups in the UK for some time now so I am interested in the debate here. Interestingly, both Catherine and I sort of benefited from the tests - she had time to prepare for the birth of her baby and be positive about it, and Matthew and I had made the decision not to take the tests but were pleased that we'd had a discussion about Down Syndrome before Alfie was born. I believe that people are unlikely to terminate a pregnancy if they really understand what Down Syndrome means, but it's that knowledge that is so hard to share.
Anyway, here is our chat (slightly edited):

Dear Alice - thought you might like to see what has been going on in the
news down here re DS...
"Today NDSS issued the following press release and resolution related to the American College of Obstetricians and Gynecologists recent recommendations regarding prenatal testing for Down syndrome. This resolution was passed by the NDSS board of directors after extensive and thoughtful discussion. As you know, NDSS has actively engaged with the media on the topic of prenatal testing for years, and we have successfully secured quotes from constituents in many media outlets, including the New York Times, Wall Street Journal, CBS Early Show, NBC's Today Show and many others. We will continue to discuss this topic within NDSS and with other Down syndrome organizations, so that we can be a stronger voice for the Down syndrome community externally. And as we state in the press release, we will continue to engage with health care professionals, including ACOG and other organizations, on an ongoing basis to improve the information and resources that are provided to new and expectant parents. We welcome your thoughts and feedback."
Catherine

Hi Catherine,
Thanks for that. I'm interested in this because in the UK everyone has the prenatal testing no matter what your age. It causes a lot of stress and unhappiness for people, but bizarrely, for us, it was sort of a good thing - it meant we thought about whether or not we would keep a child who had a 'chromosonal abnormality' and we decided that yes, we would love our children no matter what. We declined the tests because there was no point and we'd rather meet our children as people before we started thinking about their medical and genetic makeup.
If we hadn't had to think about Down Syndrome when I was pregnant, and if we hadn't made a positive decision that DS was an OK thing to have, it might have been harder for us when Alfie was born. I'm sure we would have come to the same outcome eventually, but as it was, we knew that we both felt Down Syndrome was OK.
I think it's crucial that people get to know more about DS, having our children in mainstream schools is a start, but really the medical staff who do the tests need lots of education. If the people who are treating you when you are pregnant and vulnerable are ill informed, it can hit you hard.
I'm glad the discussion is going on in the States and in Canada, even if it is unearthing quite a lot of bigotry. Right. I'm going on a bit now - think I might put something in my blog. Not sure yet.
Very best to you and your Fairleys
Alice

Hi Alice
Thanks for the message. I too am very interested in this issue!
Strangely enough we decided to get the "basic" test done and kept going as we got "abnormal" results until we finally had the amnio knowing that she was probably a Trisomy 21 baby. It was confirmed by the amnio. I just needed to know. Type A I guess. And medically, I wanted to have the safest birth for her - locally or at Univ of Maryland. In the end, all we needed was the
local hospital with a neonatalogist there. And I too felt I had a choice. Even though we would have had her either way, I felt like I got to choose to have her and it gave me a greater sense of
control over the future. I read, I researched....We prepared everyone, especially our two sons. In the end, I am so glad we knew. We were ready for her.
But that is the whole point, people should be allowed to choose what tests, and when and how, not dictated to by the government! I just want better education for the general public and the doctors too. The doc who did the amnio told us that 80% of all people with the DS diagnosis
choose to abort! Scary. He also told me to expect a daughter who would be 40 years old with a 6 year old mind. Asshole.
Sorry!
Got to run. Nice chatting!!
Catherine
p.s. I had the nuchal fold test done. It came back 1 in 750 and a "DS positive" result, here, is 1 in 250..But to compare, my friend, with a typical child, had a normal reading of 1 in 10000. So that made us more nervous ( I had the AFP first and then the nuchal fold). So we went ahead and had the multi-dimensional ultra sound - they saw a normal heart but some calcium deposits which can be a sign of DS - so the 1 in 750 became a 1 in 250 according to the geneticist (the results had to be lowered threefold) and the AFP test (bloodwork) went from a 1 in 10 to a 1 in 3.3 chance, which made us decide to do the amnio.
Many people are not aware of the thresholds - again more information to be disseminated (another new friend had an AFP of 1 in 240 and thought they had less than a 1% chance of having a DS baby so pursued no further testing - they were devastated when their baby was born - she never knew that 250 or lower was a "positive" result). Many people here choose not to do amnio because they say there is a high risk of miscarriage (1 in 100). I have yet to hear of anyone ever having a miscarriage from amnio - do you know of anyone?
Catherine

(... then the rest of our conversation is about punching a Dr Weiner - so I'll leave that to your imagination)...actually, I do know someone who very nearly lost her baby due to amnio, but the hospital carefully monitored them both and all was fine.
Alice

In My Language

This film is by A.M.Baggs, a woman who has Autism. As well as being a mesmerising artwork, it is a powerful statement about difference; questioning the value of so-called 'normal' ways of interpreting the world. During the first part of the film she uses her voice and visuals, she then translates her language and describes her intentions via a text to voice machine:

"Only when the many shapes of personhood are recognised will justice and human rights be possible"

A.M.Baggs has more work on You Tube - she posts as SilentMiaow. Matthew and I were blown away by this. It's interesting because I've known quite a few people who've been on the Autistic Spectrum, some are friends and relations, others I've worked with when I've been leading arts workshops. One woman in particular reminds me of Ms Baggs, she interacted with her environment by writing letters on everything. We did some interesting drawings together but it strikes me now that I just didn't really know her at all. It's confusing to me that I could known someone and not have known them at all.

I read today that there are some new breakthroughs in research into ASD. The genetics of the condition are being analysed and soon 'there may be an end to autism'. Hmmm. I hope that they don't mean 'an end to autistic people'. Pretty soon I wouldn't be surprised if they introduced pregnancy tests that tell you if the fetus has DS or ASD.

Interestingly, Mat's best man, Pete is a lecturer in Economics at Univerity College London. The Psych department there tested all the lecturers in Maths, Economics and Engineering for ASD - in particular Aspergers Syndrome, and according to Pete, everyone had it to some level or another. His results showed he was 'off the scale'. Might be why he is such an interesting man. These steps towards a mono-culture where everyone is 'normal' are hugely worrying.

Artists' Studio

Check out this wonderful artists' studio in Ottawa: H'art of Ottawa -
"a unique and innovative art studio where self-expression and a sense of place are encouraged and celebrated for people with developmental disabilities. Through the common language of art and self-expression, the artists of H'Art contribute to the community and the cultural life of Ottawa."

Thanks to Susan from the NSDSS for drawing this to my attention. The website's really well done; mature and respectful. Here are works by just two of the artists (I'm going to add more soon - there's so much to choose from!):

Carrie J.
"Passionate, articulate and knowledgeable about the Group of Seven, particularly Tom Thomson, Caroline is an artist whose work continues in their tradition of Canadian landscape painting. Insightful and resourceful, she contributes to the studio through her positive suggestions and enthusiastic sharing of information."


Jessie M.
"Jessie's work reflects her passion for feathered creatures. Annual trips to Prince Edward Island also inspire her finely detailed compositions."

The Cutest Baby in Halifax

Hooray for Alfie the cutest baby in Halifax! It's official!!!

I entered him for Peninsula Parent Magazine's cutest baby competition and he's WON!!! Mat said we would have a parade if he was the winner, so I'm busy planning. The article isn't published yet, but when it is I'll update this space. Hooray! Hooray! Hooray!!!!! Hooray for Alfie! Hooray!!!!

Too many appointments in one week...

I think maybe we overdid it with appointments this week! Alfie has a severe hearing loss in one ear, and fluid on both ears, so I took him to the naturopath and we had a meeting with a hearing support worker. He had physio last week and our early intervention and speech therapy were both scheduled for this week too. All good, and we are very lucky to have such great help, but my head is spinning!

Act One, Scene One

I met with Rene Pye today to talk about setting up a theatre program for teenagers who have developmental delay. She and her partner have already put on two really great productions at her son's school and their looking to expand as there really isn't much in the way of after-school clubs or entertainment for kids with intellectual disabilities here. There are lots of models for this kind of work and the rewards for participants are amazing - developing self-confidence, breath and voice control, balance and gross motor skills, literacy, communications skills, social interaction, team work, problem solving and most importantly - having loads and loads of fun.
When I used to work for Westminster Arts we helped to set up Streetwise Opera, which has developed into a really exciting and professional arts program for homeless people in the UK - it was the dream of one person who just made it happen. Their productions have brought tears to my eyes. Other groups that are putting on professional shows with people who have disabilities include: Chickenshed Theatre, Back to Back Theatre (pictured) and Lung Ha.

Stars in the Sky Dating Agency

When Alfie was 2 weeks old we saw a documentary about a dating agency for adults with learning disabilities on Channel 4. The agency was started by two women who have intellectual disabilities and they run it themselves with two support workers. Their website has a 'text and pictures' function which is simple to use and very effective - in fact it's beautifully put together. The agency only costs £5 to join, and they provide a discreet chaperone for the dates as well as an introduction - but you have to live in London. There isn't a Halifax version yet, but Alfie's only 6 months old so I guess there is time for someone to set one up here! I admire these women's ambition and hope that when Alfie is older he is able to have ideas and see them become a reality.

You're a Dream to Me!

I just came across this photo montage by a mum about her little boy Nolan. He's very cute. I think Mat's mum will like this - so this one's for you Berny! (Click on where it says Nolan).

A few useful websites

I'm trying not to spend more time blogging than playing with my children. Here's just a quickie:
I've had an update from Minister Streatch from the first letter about housing for adults with disabilities. I've included it in that rather lengthy post.
Also, someone emailed me who used to work at Home Farm Trust in the UK. I looked up the website and it looks really interesting - this is the kind of support that we should have here in Nova Scotia. Thank you Deborah.
The Big Tree is also a very good resource for using new technologies with people who have learning disabilities.
And, if you have kids you should check out Bob the Builder on the cbeebies website.

Wise Women

Matthew and I have both independently been trying to get some understanding about what it is like to grow up with, and live with, Down Syndrome. There's a lot written from a parents perspective, but not so much by people who have DS themselves. Anyway, between us we found three articles by very different, but very wise, women - they've been through so much and we were very impressed by their determination and wisdom. I've included some excerpts here:

Ruth Cromer is an actor and works in a bank. She lives in Australia.

"They have always said that people with Down syndrome would not learn very much. When I was eleven, in Year 5, my teacher wrote in my school report: "We should not expect too much of Ruth". But I wanted to show people that they are wrong about me having Down syndrome. Inside me, I had the feeling that I can do things.

I strongly believe that adults with Down syndrome can have a life! People with Down syndrome need to support each other and now we have our own association. I am past President of the Future Adult Advisors. We call ourselves the "Up Club" and we are a peer support and self advocacy group. The aim of our group is to help each other and to make new friends, and to make other people aware of us. And we have over one hundred members.

What is Down syndrome for me? I do not feel any different. I know it is there, but I do not think about it. I carry on with my life. It is not going to stop me having a flat one day and getting married. I have learnt to be strong and can cope with people who are mean to me. I don’t let it worry me. I feel secure.

In a play I did, my final speech is a powerful monologue, it really hits home:

I have Down syndrome.
It’s not a disease. There is no cure.
I was born that way. I don’t like it, but I’ve learnt to cope with it.
So have my parents.
I’m not a disabled person.
I’m a person with a disability.
I’m a person first."



Eleanor Bailey was an 11 student when she wrote this article. She lives in the USA. She is now a keen basket ball player and part of KASA (Kids as Self Advocates).

"I am 11 years old and in fourth grade. This year some little girls came to my school. I heard some people say they had Down Syndrome. On a Saturday I asked my Mom, "Do I have Down Syndrome?" Mom said that I do.
I went to my bedroom and closed the door. I didn't cry but I shut the door and was mad and upset. I didn't want to have Down Syndrome.

On Monday I went to school. I told my teacher, Mrs. Karr, that I had an announcement to make. She gave me the microphone and I said: "I have two things to say. First, I have Down Syndrome and second, I am really scared that none of you will like me anymore."
My friends were really nice. They said they already knew that and they still liked me. Some of them cried. I got lots of hugs.

But I am still not happy!
On Wednesday my Dad and I got on an airplane and went to Chicago. On the airplane I listened to my Walk Man. I have a song that goes, "Clang, clang, rattle, bing, bang, I make my noise all day." I thought that is what I can do. Even with Down Syndrome I can still make my noise.

I took lots of baths. I thought if I took enough baths I could wash my Down Syndrome away. I also thought I would put hair spray on it but my Mom and Dad won't let me have hair spray. I tried to put sun screen on it because I thought that maybe then I wouldn't have to have it all of the time. But my Dad said that none of that would work.

I got my name from Eleanor Roosevelt. Lots of bad things happened in her life. I have read all about her. She was a leader. I also know about Rosa Parks, Martin Luther King, Nelson Mandela and Robert Kennedy. Lots of bad things happened to them but they were strong and were leaders. My Dad says they made people proud of who they are and made them free.

I wish I didn't have Down Syndrome. But I do and I am a person with lots of plans.
When I wonder what to do I remember my song. I will do what it says. I will go 'clang, clang, rattle, bing, bang and make my noise all day.' Even though I am sad I know I can be as tough as anyone. That is what I want to do.

Just be me."

Anya Souza (40) lives with her partner Paul in England. She works as a stained-glass artist and is a trustee of the Down's Syndrome Association (UK).

"Back in the Sixties people didn't talk much about Down's syndrome, and amniocentesis wasn't available. Mum didn't talk to me about it as I was growing up, but later she told me that, when I was born, the doctors said I'd be mentally and physically handicapped for the rest of my life - as if I wouldn't be able to do anything for myself. But a nurse came in a few minutes later and said, "Don't listen to them, Mrs Souza. Your daughter will give you great pleasure." That part was true. Mum was always hugging me and telling me she loved me, and I know I made her proud.

People could see I had Down's syndrome because of my features. My eyes are almond-shaped, my nose is small, my feet are flat and I have tiny hands. I must have been about 17 when I looked in the mirror and thought, "Is this really me?"

But I don't remember feeling bad about myself, because I thought I looked pretty and I knew I was bright. When I read about a girl in America whose parents put her through loads of operations to change her Down's syndrome features I was horrified. They thought they were making her look "normal", but the child had no say. I'd never consider plastic surgery - I'm happy with my face. Mum encouraged me to be independent by teaching me to cook and do housework. She felt it was important to give me freedom. She believed in me so I believed in me.

I met my partner, Paul, at a conference for people with learning disabilities when I was 21. He's ten years older than me and has diabetes. It was love at first sight. That night there was a dinner with dancing afterwards. Paul held out his arms for me to dance with him. It was very romantic. Afterwards, he phoned and asked me out for a meal.

We've been together ever since.

When we met, Paul was living with his grandmother. She was old-fashioned and didn't like her grandson having a Down's syndrome girlfriend. So Paul stayed with me at weekends. We moved in together properly in 1998. The fact that I have Down's has never been a problem for Paul. He loves me and admires my positive attitude. We both like classical music and reading Harry Potter books. He's a very soothing person. I call him my "hunny bunny".
Marriage isn't important to us because we'll be together forever. We would have liked our own family, but decided against it. There was a one in three chance our child would have Down's syndrome and it could also inherit Paul's diabetes. I wouldn't mind having a Down's syndrome baby because I'd give it all the love my mother gave me, but I'd probably find it hard to cope without help. And, financially, it would be a struggle.

Sometimes people stare at me in the street. One man on the train even called me "mongol". I thought it best to ignore him, but I felt very angry. Another time a boy laughed at me on the bus. This time I stood up in front of everyone and gave him a mouthful.

It amazes me that strangers make rude comments. Who are they to judge? Checkout assistants have asked me if I have the money to pay for the food in my basket. I just give them a stare and have been known to shout, "Excuse me?" Just because I have a disability it doesn't mean I'm stupid or penniless."

I don't feel sorry for myself and I don't want anyone else to feel sorry for me, either. I enjoy my life so there's no need. I'd have liked the doctors who made those comments when I was born to see what I've achieved."

(Apologies to Ruth, Eleanor and Anya for the edits, but I've linked to the articles so you can get their full stories in their own words. The photo's by Anya Souza were taken by Angela Nott for Family Circle)

Jane Cameron

I absolutely adore the work of this artist, Jane Cameron. These are images of some of her tapestries. She also wrote poetry and was a swimmer for the Special Olympics.

Funny Weather

We have just bought the biggest bed you could possibly imagine. You could probably easily sleep eight people in it - no exaggeration, and at 3.30 am I've been 'windmilled' out of it by a 3 year old. 'Windmilling' is Noah's special sleeping style. He very sweetly comes in crawls into bed next to me or Mat, then starts to move round so his feet are on my back, then my arm, then my neck. Aghh! Now I'm totally awake!
I will give it one more night and then we'll have to start a 'Noah sleeping in his bed all night' plan again. Not sure how yet but I seem to remember we've done this before. Lots of times.

My sister has just had her book published in the UK. It's a cartoon book about climate change. It's called 'Funny Weather' and it's really very very good. The Independent had a four page spread of it yesterday but the images are not online and because I'm in Canada I can't get a copy for ages. She's so clever. I'm very proud. Climate change is the big media issue in the UK at the moment. People are finally becoming more aware that they can, and have to, do something. Even if it's only the tiniest personal changes, to help reduce emissions. (I for my part have moved to Canada and am now encouraging all my friends and family to use up huge amounts of fuel by flying here to see us. Hmmm).

I find it so easy to justify taking the car to the shops rather than walking, and flying across the world to see the friends and family I love so much, but really it's not a joke - we're living in Nova Scotia and it's only snowed once all winter, in fact people are walking around in t-shirts in January! I'm surprised that there isn't more in the press about it here - you don't expect a green Christmas in Canada, but the only article I've seen in a local newspaper said that the November heatwave we had wasn't global warming. No. Global warming is heating up the rest of the world but leaving Canada alone. The warming we're getting here is a special kind which means we can still drive our SUV's around.

Right. My new year's resolution is to only use the car on two days a week. Is that possible with two kids? Which two days? Starting tomorrow, or the next day? Well, at least it ties in with my 'lose the 30 pounds I've put on since I got pregnant with Alfie' resolution. I will try it and see.

Human Rights for People with Disabilities: Accommodation in Nova Scotia

(This photograph is by Richard Bailey, It's of a man named Peter who has Down Syndrome - a true English gent. He has such a beautiful home and - look closely - a fantastic taste in waistcoats.)

In December 2006 the United Nations adopted the 'Convention on the Rights of Persons with Disabilities'. This has to be adopted by 20 countries before it becomes international law, but with luck it should be active in a year or so, and will provide concrete instructions that flesh out the bones of the human rights already laid out in the Charter of Rights and Freedoms.

With this in mind, I've drafted a letter further outlining my concerns about the housing situation in Nova Scotia. This time I was writing on behalf of the NSDSS. This is just the draft version, in the final letter we changed it to read 'special needs' and 'intellectual disability' rather than 'learning disability' because those are the terms normally used here in Canada:

I am writing to you on behalf of the Nova Scotia Down Syndrome Society. We comprise more than one hundred men, women and children who have Down Syndrome, their families, support workers and associated professionals. As you can imagine with such a large group, our backgrounds, beliefs and experiences are diverse. We have two things in common; our lives have all been affected by an extra chromosone, and we are all citizens of Nova Scotia.

As such, we call upon you, our representative in the Nova Scotia Government, to ensure that the rights of adults with learning disabilities are fully met in this province. As you are no doubt aware, in December 2006 the United Nations adopted the Convention on the Rights of Persons with Disabilities. This document outlines the steps that need to be taken to ensure that basic human rights are afforded to people who have disabilities.

In particular, it states that adequate provision should be provided to ensure that people can live independently and be included in the community (Article 19):
"a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs."

There are three issues that gravely concern our membership:
• The proposed creation of an institution to house vulnerable adults at the Cobequid Centre,
• The lack of housing choice for adults with learning disabilities - in particular the lack of small options housing in Nova Scotia,
• The lack of a formal consultative process with the learning disabled in matters which affect their basic human rights.

It is our conviction that large scale living arrangements lead to segregation, isolation and unhappiness for those who are forced to live in them. Large group housing schemes create the impression of 'work' rather than 'home' for staff and carers, this is inevitably reflected in their attitudes and they can treat residents as 'chores' rather than people whose homes they have entered. No matter how well intentioned the management of these large group homes is, practical physical care - rather than person-centred care - becomes paramount, the respect for individuals that is installed in a home environment is lost, and low level abuse can easily become commonplace. In addition, citizens with disabilities are segregated from the greater community, sending the message that 'they' are different and should not be part of society as a whole.
This is what one resident said about living in an institutional setting at which he was subject to horrific abuse: "Being in the institution was bad. We got beat up at times but that wasn’t the worst. The real pain came from being a group. I was never a person. I was part of a group to eat, sleep and everything... it was sad." (Source: www.mencap.org)
In the short term a large group home might be the cheaper option for housing large numbers of citizens, but at what price?

We call upon you to do everything in your power to lift the moratorium on small options housing. Age appropriate schemes for adults living as part of the community must be reintroduced. Living with foster families does not constitute an age appropriate solution for adults and it is shameful that people should be forced to live with their parents throughout their adult lives. These current schemes do not provide the opportunity for people to choose their own living arrangements as outlined in the UN Convention on the Rights of Persons with Disabilities. Other provinces throughout Canada have successfully managed their budgets so as to provide workable, inclusive housing choices for all. We believe that citizens of Nova Scotia should also be able to live within the community, in their own homes, no matter what their intellectual capability.

We are concerned that the policies of your department are not reflecting the needs and wishes of people who have learning disabilities and their families. The Nova Scotia Down Syndrome Society believes it is crucial to actively involve people with disabilities in the decision-making processes about policies and programs that affect them. We would like more information about the consultation processes that you currently undertake and would be happy to contribute to any working parties or committees that will inform future plans.

This is the province that during 9/11 so impressed the world with its response to the housing needs of stranded airplane passengers. People offered their homes, and even their own beds to help those in need. The people who live in Nova Scotia do not want to see the most vulnerable members of our communities shut away, risking abuse and subject to misery. It is a poor reflection on such a community if our leadership fails to adequately address the housing needs of people most at risk.

Thank you for taking the time to hear our concerns.
Sincerely,
Alice

Advocacy Letter Housing for Adults with Special Needs

This couple have been married for three years (they've been together for twenty years, but only recently tied the knot). They live together, semi-independently, in their own flat. They both work part-time. This photograph is part of a series by Richard Bailey, commissioned by the UK Down's Syndrome Association.



For some reason there is hardly any provision for adults who have learning disabilities to live independently in Nova Scotia. I'm really shocked!!! Here's a letter to Minister Streatch, and a reply from Darrell Dexter, the leader of the Nova Scotia NDP whom I copied it to.

Dear Minister Streatch
I am very concerned that there is a moratorium on the development of housing for adults with learning disabilities and special needs. My son is now only 5 months old, a time when his future as an adult seems so far away, and yet I know what my hopes and dreams for him are: I hope that he is able to develop into a confident adult, feeling proud of himself, continually learning and discovering his hopes and dreams. I want him to be able to make friends, socialise, fall in love, work, and contribute to his community. I strongly believe that living independently as an adult is central to this - it was only when I left home that I really found myself. I wasn’t just a daughter, but an adult in my own right. Will the extra chromosone that my son was born with mean that he is unable to ever leave home?
I have recently relocated to Nova Scotia from London, England, and am delighted to be a part of such a supportive, outgoing and practical community. Services for preschool children are outstanding in my opinion. It surprises me then, that there is such a gap in provision for adults who have developmental delay. My previous position as Director of Westminster Arts Council, gave me the opportunity to work closely with many providers of assisted living environments for adults with learning disabilities, training staff to use the arts as a tool for person-centred care planning. In particular, I have been working in partnership with Look Ahead Housing and Care (www.lookahead.org.uk) and as a volunteer artsworker for adults with global delay in publicly run homes, and have been able to experience, first hand, the opportunities and experiences that living with peers has afforded adults who previously have lived with their parents.
I feel passionately about this issue as a parent, but also know from my professional experience that this is not just a parents fancy, but a real need that must be met. Please can you let me know if there is anything I can do to help bring about a speedy end to this moratorium.
Thank you for taking the time to read this letter.
Sincerely
Alice

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Here is the response from Minister Streatch:

Dear Ms. Evans:

Thank you for your e-mail of December 17, 2006, regarding the moratorium on the
development of housing for adults with learning disabilities and special needs.

A re-design of Services for Persons with Disabilities in Nova Scotia has been
underway for some time. The goal is to provide a range of services for
individuals with disabilities which will offer a complete continuum of supports
and residential programs. The Direct Family Support, Alternative Family Support
and Independent Living Support programs are three new programs which have been
implemented since January 2005.

Additional work through a provincial residential review will identify current
residential resources, capacity and demand for client services in Nova Scotia.
Following this review, a plan to meet current and future demands for residential
services will be implemented. I am confident that this work will result in the
timely response for residential services.

Thank you for providing the website for Look Ahead Housing and Care. I have
forwarded this information to staff of the Services for Persons with
Disabilities program.

Thank you, again, for your correspondence and valuable input.


Sincerely,


Judy Streatch
Minister
Department of Community Services
P. O. Box 696
Halifax, NS B3J 2T7

-----
Also, the leader of the opposition sent me an email:

Dear Alice
Thank you for sending me a copy of your letter to the Minister of Community Services regarding the continued moratorium on housing for people with intellectual and developmental disabilities, and services for children with special needs.
Thank you for sharing your son’s situation with the Minister. I know it is difficult for families to share their very personal stories, but it is one of the most effective ways available to make the government take notice. We hope that the stories that so many Nova Scotians have told the Minister and our office will result in an end to the freeze on small options beds. The NDP has been urging the Tories to remove the moratorium government put on small options homes and allot the necessary financial resources to provide supportive community housing for those with intellectual disabilities.
People deserve more, and the NDP will continue to keep this issue in the forefront and pressure the government to live up to its responsibility and provide small options and supportive living placements for those in need.
I attach for your review some of what the NDP has said on this matter this month in the legislative assembly.
Again, thank you for providing me with a copy of the letter sent to Minister Streatch.
Sincerely,
Darrell Dexter
NDP Leader
-----
Here is the discussion about this topic in the Commons:

HANSARD FROM THE LEGISLATURE
NOVEMBER 8, 2006
COM. SERV.: SUPPORTIVE LIVING - WAIT TIMES

MR. DARRELL DEXTER: Mr. Speaker, my question this morning will be for the Minister of Community Services. Taran Ritcey is a 23-year-old woman with an intellectual disability. She has been on the waiting list for supportive living since 2003. Her family has been told that the system is a one-in, one-out system, and there will not be a placement for a long time. My question, through you, to the Minister of Community Services is, why are supportive housing options for adults with disabilities so poorly funded and kept in such short supply?



HON. JUDY STREATCH: Mr. Speaker, I thank my honourable colleague for the opportunity to rise today to discuss something that is of the utmost importance to all Nova Scotians. Certainly, while I would never comment on the specifics of any case, I know that there are families in Nova Scotia who come to us looking for assistance, they come to us looking to provide the best possible care that we can for their families, and that is absolutely what we do at the Department of Community Services, and we will continue to do that through a variety and a myriad of supports, and supports in the community, and through our programs and facilities.

MR. DEXTER: Mr. Speaker, contrary to what the minister says, this is exactly what the department does not do. Taran's family and three others bought a house to provide supported living for four young adults. Community Services refuses to fund this home, although it would give these young people the supportive housing that is their best choice. This government places adults with disabilities in long-term care facilities, in adult foster care, or alternative family adoptions. Yet, those options limit the independence, and many consider them demeaning to grown adults. I would ask the minister, through you, why is her department so determined to enforce a moratorium on community-based housing that it turned down these families?

MS. STREATCH: Mr. Speaker, at the Department of Community Services we take very seriously the entire issue of programs and supports. We have a very dedicated, competent staff who work diligently, work extremely hard to ensure that the needs are being met. I'm very pleased that this government brought in the direct family support, the alternate family support, and the independent living support programs to provide the up-front preventative proactive assistance to those families in order for the family members to be kept in the community. Now, currently underway we have a review of all of our programming and facilities in the province, and we look forward to receiving all interested applicants and all interested programs, and we will consider them all and move forward in the best interests of all Nova Scotians.

MR. DEXTER: Mr. Speaker, it seems that every day that we come to this House we have to point out to the Minister of Community Services the failures in her department. This is another one. The minister might think that it is okay for adults to live in foster care, but most adults with disabilities disagree. Wendy Bird and other parents want their adult children to live independently, with dignity and with respect. (Applause)
I ask the Minister of Community Services, when will her department finally listen to the Kendrick report, families and adults with disabilities themselves, and start offering more supportive housing?

MS. STREATCH: Mr. Speaker, this government, indeed, the Department of Community Services takes very seriously the lives of all Nova Scotians who we deal with daily, and we have a very dedicated, competent staff who work extremely hard to meet their needs. Forty-seven hundred Nova Scotians' needs are being met through the Services for Persons with Disabilities to the tune of $183 million. That's the commitment of this government.

**
NOVEMBER 21, 2006

COM. SERV. - SMALL OPTIONS HOMES BED: FREEZE - STATUS

MR. DARRELL DEXTER: Mr. Speaker, my question this morning is for the Minister of Community Services, through you, of course. This government has had a freeze on small options home beds for 11 years, with no end in sight. The results have been devastating to intellectually-challenged adults and people with long-term mental health issues who have few housing options available. Many families held a press conference this morning, and have come to the Legislature today for answers. So my question to the Minister of Community Services is, when will the freeze be lifted?

HON. JUDY STREATCH: Mr. Speaker, I thank the Leader of the Opposition for the opportunity to rise and speak on this very important issue. The importance of services for persons with disabilities is clearly evident with this government's commitment of over $183 million; that's approximately 25 per cent of our budget. We want to ensure that the 4,700 Nova Scotians who we service are being serviced to the best ability that we can. As well, we offer a wide range of services and programs, and we will continue to offer a wide range, and that continuum of supports and programs will stay in place for the duration of this government and certainly, hopefully, long in the future.

MR. DEXTER: Mr. Speaker, the minister doesn't seem to realize what a dismal failure her department has been in this regard. A committee of experts and Community Services staff recommended licensing and expanding small options homes for intellectually- challenged adults and people with long-term mental illness who need support of housing. Instead, we've got a freeze on small options beds and interim standards that are over a decade old. So my question through you, Mr. Speaker, to the minister is, how can this government justify forcing disabled adults to wait for years for a supportive living environment?

MS. STREATCH: Mr. Speaker, I would remind all members of this House the commitment made by this government for the three programs that provide support for persons with disabilities in their homes. Of course, I'm speaking about the Direct Family Support Program, the Alternative Family Support Program, and the Independent Living Support Program. Those three programs are upfront programs that provide support for individuals in their homes and in their community. As well, upon becoming minister, the five-bed transitional home in Dartmouth was announced, which provides transition for individuals who need transition back into the community. As well, we have, of course, a residential review underway, and we're looking forward to fulfilling that continuum of supports and programs as we move forward, and I look forward to the information that comes back through that review as we move forward.

MR. DEXTER: Mr. Speaker, the minister is willfully blind to the needs of the people in her care. We needed more small options and supportive living placements 15 years ago, and now we need them more than ever. Instead, they have gotten five studies in six years, and delay after delay, while disabled adults continue to wait for a place to call home. My final question to the minister is, why won't her department start to listen to the experts who have already weighed in on this issue and end the moratorium on small options homes?

MS. STREATCH: Mr. Speaker, I will reiterate for my honourable colleague across the way, the listening and the action has resulted in direct family support, alternative family support, independent living support, a five-bed transitional home, and a transitional option at the Cobequid Health Centre. That's the commitment of this government to the people of Nova Scotia.

MR. SPEAKER: The honourable member for Dartmouth South-Portland Valley.

COM. SERV.: COMMUN. LIVING - ASSURANCE

MS. MARILYN MORE: Mr. Speaker, my question is for the Minister of Community Services. Last week the minister announced a 25-bed group home in the old Cobequid Multi-Service Centre. This is good news for those11 men who have languished at Sunrise Manor for years waiting for a new home. However, the choice to build a 25-bed group home, while maintaining a freeze on community living placements, is sending a frightening message to families whose disabled adult children cannot get supportive housing. So my question to the minister is, what assurances can she offer these families that the government is not favouring institutional settings over community living?
[10:30 a.m.]

HON. JUDY STREATCH: Mr. Speaker, I want to thank my honourable colleague for the question, and I know she asks it with all sincerity. The commitment to move forward with the Cobequid residential community, as the honourable member mentioned, is the fulfillment of a commitment made by this government and the former Premier. I'm pleased to be able to follow through on that commitment, and although I can't speak to the specifics of any cases, I know that the families are indeed extremely pleased with that commitment, as it warms their hearts to know that their families will be having a very loving and supportive home.
The renovations that we do, Mr. Speaker, will include such ideas as green space and park space to ensure that this residential community is, indeed, a loving environment. Again, this is an option. This is not for everyone, we recognize that. It's part of our continuum of programs and services that we provide to the people of Nova Scotia, and I look forward to the day when we can go and join those families in their new homes.

MS. MORE: Mr. Speaker, I'd suggest to the minister that for the hundreds and thousands of other families waiting for community living placements that the government is moving too slowly and too late. These families are so concerned that they are holding a press conference while we're starting Question Period here this morning - they had planned to be here for Question Period to hear the minister's response themselves.
Five studies in six years, and the waiting list for community placements grows longer and longer. Families are frustrated at watching their adult children continue to be forced to live at home or in other inappropriate settings without the programming and services that they require. I ask the Minister of Community Services, is her department working towards phasing out small options homes, yes or no?

MS. STREATCH: Mr. Speaker, this government and the Department of Community Services is committed to providing a continuum of services and programs, and that includes the programs I mentioned earlier which provide that on-the-ground, in-the-community, in-the-homes, financial and respite support. It includes small options; it includes the new Cobequid residential community; and it includes the five-bed transitional home that I mentioned. While I can't do everything today, the Department of Community Services, and certainly since becoming minister - we've moved in a progressive manner forward to ensure that the needs of all Nova Scotians are being met, and we will continue to do so.

MS. MORE: Mr. Speaker, well, the reality is an 11-year freeze on new option beds, five studies in six years, and interim standards that are over a decade old - too little, too late, too slowly. That's not a very good track record on supportive housing. So my final question to the Minister of Community Services is, why does this population, one of our province's most vulnerable, continue to be treated this way?

MS. STREATCH: Mr. Speaker, to my honourable colleague across the way, I will repeat - a $183 million commitment on the part of this government, over a quarter of the department's budget, is dedicated to fulfilling the needs and requirements of persons in Nova Scotia who require the assistance of the department. Direct family support, alternative family support, independent living support, the five-bed transitional home in Dartmouth, and the Cobequid residential community are just fine examples of this government's commitment.

Dear John

One of the members of the NSDSS wrote an newspaper article about her experience of raising two children who have Down Syndrome. It was a beautifully written, personal and heartfelt piece, however it prompted a very stupid and unkind response from one of the readers. I'm just going to put my reaction here, but many people wrote back to 'John' about their experiences of parenting children who have Down Syndrome. There are many different replies, but the one united message is that poor 'John' has missed out. You can read them all on the NSDSS website.

"Hi, I am writing about the article featured in the Saturday paper regarding the parents of 2 down syndrome little girls. To tell you the truth I would not want to be in those parent's shoes. My wife and I terminated two pregnancies once we found out our babies were going to be down's. There was no way we were going to bring special need babies into our family. Those parents in the paper say they are happy however deep inside I am sure they are struggling emotionally. They are not blind. Obviously they have not been around normal babies. With all the resources available nowadays to find out early about the genetics and gender of the baby, why would anybody put themselves thru this kind of life. Just wanted to share my views on this subject."
JOHN

DEEP INSIDE I AM SURE JOHN is struggling emotionally. It must be difficult for him to know that he could have had gorgeous and adorable children but didn't because, like hundreds of others, he wasn't privileged to accurate information. I have two children, one with DS and one without, and am delighted and proud of them both equally. They are both wonderful children, at times challenging, and sometimes giving me so much joy I could cry. I don't want to rub John's nose in it though because he's dealing with difficult decisions in his own way.

I was lucky, I'd known people who had Down syndrome before I got pregnant and knew that my family could be richer for the difference that DS would bring. Most people aren't so fortunate - and the unknown can be very scary indeed. It is important for those providing the Down syndrome neonatal tests to be able to provide accurate and holistic information - not just scare stories - so that people are able to make informed choices and aren't left to fall back on bigotry.

Advocacy letter - health provision for children with special needs

Alfie in his Autumn ensemble.











Here's a letter from November 2006 adapted from a template that members of the Nova Scotia Down Syndrome Society sent to the local minister responsible for community services:

Dear Minister Streatch
I am the parent of a child with Down Syndrome and would like to express my sincere thanks for the services which are available to us as a family in Halifax. These services will help to ensure that our little son, Alfie, will be able to be the person he deserves to be - able to communicate and contribute and be a vital part of our community. However, I am deeply concerned that our children are not all receiving the level of care and attention they need from the Nova Scotia government.

Some families are waiting up to 3 years for access to services like Early Intervention, Speech-Language Therapy, Occupational Therapy - the services that are crucial in helping our children reach their full potential and become contributing members of society.

Our son is just three months old and we really hope that he will be able to get the support he needs with speech and communication as soon as possible. If Alfie has to wait until he is 3 years old, the crucial learning period will have passed and the cost of helping him retrospectively, and supporting him at such a late date, will be so much greater. Unfortunately, physiotherapy and speech therapy cost so much once time has passed - if you can get in early you save thousands as well as much heartache for children and their loved ones.

I am interested to know how the Government of Nova Scotia will be addressing these issues. I believe that it is in the interests of our community as a whole to ensure that equal opportunities are provided for our children with disabilities. They do not deserve to be left on the low priority list.

Thank you so much for your attention to my concerns. I look forward to a quick resolution of these issues and again thank you for the services that are already being provided - I know these will make such a difference to my son's life.

Sincerely,