Down Syndrome Today

Down Syndrome Today

We collect a huge amount of data on medicine, and disabilities, but no amount of data can give us the lived
experiences of people with Down syndrome and their families.
I hope that you will enjoy this film and that it will help in your dealings with
prospective parents, with families and even people with Down syndrome themselves. There’s been an enormous change in the expectations for children who have Down syndrome over the past thirty to forty years now. There is no doubt that Bridget will have a
very full life with lots of different aspects to it just like anyone else would. I find that all the time that women are told
that life for a child with Down syndrome that they are given a certain interpretation of
that that I don’t feel is relevant and is actually accurate now. I’ve got family friends and my own friends
and all that and they keep saying, Digby, you’re amazing. My art is to me is like, is passion and in
my blood. He’s had five sell out shows so he’s obviously extraordinarily popular, and his works are very appealing, I think it’s the colour. Putting colours together in a really nice way. And I think that’s what people respond to. (Background: Just try that and see what happens) Well, I feel like I’ve improved what I’m doing at the moment and what I’m doing, my journey, and I’m happy with it. That’s a nice looking tree. We’re all about inclusion and not exclusion
so the days when you used to see kids go on special buses to special schools – we’re
a long way away from that now but that’s the stereotype that people have in their minds and it’s very hard to make sure that people are thinking about Down syndrome in a relevant and accurate way. During the pregnancy, we – the best thing
probably that we did was contact Down syndrome NSW…we got great information. We met other parents who had older children so that we could see what Bridget’s life might be like. So that really helped us to make a decision and to know that she could have a good life and that we would too. It wasn’t going to
ruin our lives. And it hasn’t. I’d encourage all health professionals to
just think about how the feelings that they hold themselves about something to do with disability or to do with termination of pregnancy will impact and how much they know about it as well. I see young people with Down syndrome and adults with Down syndrome living rich and rewarding lives as valued members of their
families and their communities. I would say that that’s attributable first and foremost to their families and the role of early childhood intervention is to support the families. We’ve got three daughters…and Bridget’s
the eldest. So she’s our first born. They’re all at school together…they all get on pretty well and yeah, they are all good mates. We’re a busy family of five – my husband and I both work and really, Bridget is just one of the three kids, that she has to do what everyone else does. It couldn’t work any other way and her sisters wouldn’t have it any other way. I think that the biggest change is in the
expectations that we have for children, because when we have high expectations for what they
can achieve, then children will rise to those expectations. Because we’re naturally creating
the opportunities for them to do so. So it is now considered to be quite a natural thing for children who have Down syndrome to be involved involved in everything that is going on for a family and everything that is going on in a community. (birdsong) Essentially, we paint together. He comes over here and we paint for a while, then we often go for a bit of a dog walk, looking around,
pointing things out, things that might work in a painting…and then we come back and
do things in the studio. At the moment Digby is doing a series of celebrities, because
he’s very interested in movie stars and in pop stars. I’m so proud of myself doing this of recent
one of what I’m making now with Evie, because Evie is the best mentor I have never had. (background discussion)…so it wants something that is a bit metallic looking. Children with Down syndrome are very different in their personalities and their skills and if we can pick up on the things that each
individual child enjoys and is good at and build on those things then we are giving them the opportunity to extend those strengths later in life into things that will help enrich
their experience and their contribution. I got the piece in my head saying let’s have
Edward Scissorhand and let’s do the DVD. It’s him on the side with his scissors with butterflies on them and a dark blue sky and really light stars…looks good. When I see Annie…I love that musical Annie…David
Bowie is amazing. Then I paint Heath Ledger then I thought that that is a painting to
do. So he was like in the scenery he is in behind bars and being cheeky, always, so,
it got me thinking, lets do that. My mum is really happy because she had me doing my life and art and drama and dancing and all that. Children who are born in this
era with Down syndrome have a great potential and like any child that’s born they are going
to be different. Children with Down syndrome are going to be more like their brothers and
sisters than they are other children with Down syndrome. What we have done is always sort of had a
vision for Bridget on where we thought she should be going and it’s about being independent
and about being part of the community so when when she’s shown an interest in doing something
if we’ve brought in the supports to help her get to do that sort of thing. Like at the
gym, she normally has a gym buddy, who will go with her. Then that makes that a lot more
accessible for her. Learning is cumulative. And one skill paves
the way for another. Each new understanding… …each new concept is a foundation for more understandings and more concepts. (girls laughing) The girls all have their particular interests
and things that they love to study…and Bridget’s is Maths. We had assembly. Great. And
they got three kids up who had done the most mathmatics activities to ‘encourage us all’
– the third kid she got like 37 activities, and then the second kid stood up and she had
done like 42 or something and then the number number one they had this big lead up and it was Bridget and she had done like 120 activities. Wow! Fantastic! Well done, Bridget! It’s all about building confidence, motivation…the desire to participate. If we get those things established early, that’s a great foundation
for schooling and for later life. I’ve made my own hip hop song…it’s called
Bounce. (sings) Bounce with me, bounce with me…somebody….(beat box noises) to love. I’m on my way to being a more independent
person that’s what my mum and dad love to see me doing. Yeah, so I love to make them proud. To see their boy who is not a baby no more, he is a man now and he is doing by himself. That’s what I love to see myself doing. I suppose in the early days people probably
worried about what was going to happen with Bridget, you know. She had some health issues,
and had a few, you know, quite major operations, but of course, you know, now they don’t worry
about her at all, or about us, because they see that she’s grown into a beautiful young
woman, who is achieving all those different things, so those early days of concerns are
long gone. Health professionals have a real role in facilitating
decision making because they are well placed to sit with pregnant women and their partners
and have a discussion about what they need to know and how they need to proceed. And
definitely women value that input from health professionals whether that be a doctor or
a genetic counsellor or a midwife, so it’s really imperative for that health professional
to make sure they deliver accurate, sensitive and realistic information. And that they can give people the time and the space and perhaps challenge them a little bit to think about what is going
to be important for them because if our aim is to facilitate an informed decision it’s
not just about receiving correct information it’s also about getting people to think about
how this sits with their own values and beliefs so that they are more likely to make a choice
that they are less likely to regret later. The research that we have done so far, if
there was a message that I would want to give health professionals, it would be around making
sure that when people are having prenatal testing that they are given accurate and up
to date information about the condition that’s being tested for. So for example with Down
syndrome, you can safely refer people to the Down syndrome website, because they have some excellent resources. We had the choice on what we were going to do, and we made a conscious choice to continue. I just couldn’t imagine life without Bridget
now. I suppose we don’t see her as Bridget with Down syndrome we just see her as Bridget getting on with life like anyone else would. High five! Yeah

4 comments / Add your comment below

  1. Beautifully put together and such a vital film to engage the medical profession in a positive way. 

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