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Entries from March 2009 Spread the word All clear Happy World Down Syndrome Day “Everybody’s got a bi

Posted Jun 12 2009 6:43pm

Print I’m not going to say much about this as it’s not a word that’s actually used much over in the UK, and I do think some people have a tendency to get carried away about it. However, clearly the use of the word “retard” in a derogatory manner is to be discouraged, and in that spirit I encourage you to take a look at the Spread The Word website.

Print I’m not going to say much about this as it’s not a word that’s actually used much over in the UK, and I do think some people have a tendency to get carried away about it. However, clearly the use of the word “retard” in a derogatory manner is to be discouraged, and in that spirit I encourage you to take a look at the Spread The Word website.

The good news is that G’s six-month heart scan shows that everything is fine and he doesn’t even need to go for any more check-ups. We were pretty confident he was okay given how strong he is but you never know. The even better news is that in just a few hours I will be boarding a plane to head back to London to see him and his Mum and his brother. Can’t wait.

The good news is that G’s six-month heart scan shows that everything is fine and he doesn’t even need to go for any more check-ups. We were pretty confident he was okay given how strong he is but you never know. The even better news is that in just a few hours I will be boarding a plane to head back to London to see him and his Mum and his brother. Can’t wait.

As previously mentioned today is World Down Syndrome Day, marking 50 years since the publication of Professor Jerome Lejeune’s discovery that an extra copy of chromosome 21 was responsible for the syndrome identified by John Langdon Down.

wdsd_logo_550

I’m not entirely sure how one is supposed to mark World Down Syndrome Day, and there are no events planned for the UK anyway, as far as I can tell, but it is somewhat fitting that I will be spending most of the day on a flight to California, the state I was physically located in when I entered the metaphorical state of Illinois as we received the news of G’s diagnosis.

As it happens the anniversary of that day falls on the last day of my US trip and is also the day G is scheduled for his six-month heart scan. Obviously I would rather be present for such an important occasion but rather than wait for another appointment we decided to go ahead with the scan while I am away.

Obviously I am hoping that I am not awoken by another late night phone call. I don’t want to tempt fate by saying any more at this stage.

As previously mentioned today is World Down Syndrome Day, marking 50 years since the publication of Professor Jerome Lejeune’s discovery that an extra copy of chromosome 21 was responsible for the syndrome identified by John Langdon Down.

wdsd_logo_550

I’m not entirely sure how one is supposed to mark World Down Syndrome Day, and there are no events planned for the UK anyway, as far as I can tell, but it is somewhat fitting that I will be spending most of the day on a flight to California, the state I was physically located in when I entered the metaphorical state of Illinois as we received the news of G’s diagnosis.

As it happens the anniversary of that day falls on the last day of my US trip and is also the day G is scheduled for his six-month heart scan. Obviously I would rather be present for such an important occasion but rather than wait for another appointment we decided to go ahead with the scan while I am away.

Obviously I am hoping that I am not awoken by another late night phone call. I don’t want to tempt fate by saying any more at this stage.

I was completely wound up by the title of this post by Patricia Bauer (”Eliminating Down syndrome population: A good thing?”) and some of the apparently patronizing comments made by bioethicist Art Caplan of the University of Pennsylvania: “Down syndrome children are normally pretty happy, loving, caring” … “they are great to have in the family”.

But then I watched the video and realised that the written word fails to convey what he was trying to say. Actually he has some interesting comments and the main theme is something I absolutely agree with: “I think what we’re going to have to insist upon is good counseling” … “what I’m worried about is that we don’t mandate counseling to go with testing, just to give the full picture.”

“There’s a lot of different humans out there… I think it’s important to keep in perspective, everybody’s got a bit of disability. It’s important to keep in perspective still that people have the right to choose to do what they want to do as parents, but I’m going to come back and say it’s counseling and giving people the full picture that’s key to getting this testing done in an ethical manner.”

I was completely wound up by the title of this post by Patricia Bauer (”Eliminating Down syndrome population: A good thing?”) and some of the apparently patronizing comments made by bioethicist Art Caplan of the University of Pennsylvania: “Down syndrome children are normally pretty happy, loving, caring” … “they are great to have in the family”.

But then I watched the video and realised that the written word fails to convey what he was trying to say. Actually he has some interesting comments and the main theme is something I absolutely agree with: “I think what we’re going to have to insist upon is good counseling” … “what I’m worried about is that we don’t mandate counseling to go with testing, just to give the full picture.”

“There’s a lot of different humans out there… I think it’s important to keep in perspective, everybody’s got a bit of disability. It’s important to keep in perspective still that people have the right to choose to do what they want to do as parents, but I’m going to come back and say it’s counseling and giving people the full picture that’s key to getting this testing done in an ethical manner.”

I’ve been really busy at work and at home which is why I haven’t posted much here and is also why I only just noticed that this blog has been awarded the Premios Dardos blog award by Libby at Blessings and Glory. Many thanks!

premios_dardo1

Apparently ““Premio Dardos” means “prize darts” in Italian, and the award is given in recognition of cultural, ethical, literary, and personal values transmitted in the form of creative and original writing.”

I am particularly honoured and grateful to have received the award from Libby as Blessings and Glory was one of the first blogs I started following when I started Welcome To Illinois and I really respect the way she is using her blog to provide a service for parents who are new to the world of Down’s syndrome (which was one of the main reasons I started writing this thing, even if it doesn’t come across that way). Also I think G looks quite a bit like Charlie (and not in a DS type way) while Henry is one of my favourite people I have discovered since I started the blog. For example:

“Henry we don’t swear inside this house!”

pause

“Can, I swear outside?”

The other reason I am glad I got this award from Libby is that she removed the requirement to answer 17 questions about myself before passing it on. Instead I just have to

  1. Accept the award by posting it on your blog along with the name of the person that has granted the award and a link to his/her blog.
  2. Pass the award along to blogs you find worthy of this acknowledgment.

That being the case I hereby award the Premios Dardos blog award to:

I only started following Girl in a Party Hat recently and was sad to discover that it is only designed to last a year and should end in May. I hope Amy changes her mind as I love the way she tackles challenging subjects in an entertaining way:
Does Dopey have Down syndrome?
Can a Kid with Down syndrome Look Like Kate Hudson?
Mamas, Don’t Let Your Babies with Down syndrome Grow Up to be Prom Queen (or King)
And she’s always insightful – nearly as insightful as her daughters.

I’ve always had a soft spot for Vince since I realised he was born on the same day as J. That and the fact that he is completely adorable. I always look out for updates from Christina as she is refreshingly honest and direct about Down’s syndrome and the challenges it poses, as well as the joy she gets from her family. She is also no less insightful and always has good advice. To wit:

“If you google something like: my friend had a baby with DS, help they got a DS baby, my friend is so sad she had a baby with DS, etc this is my tip: Pick up Road Map to Holland by Jennifer Graf Groneberg and read it! Don’t give it to your friend yet, YOU read it, and then you call her up [after of course congratulating them to the baby in the first place].”

I’ve been really busy at work and at home which is why I haven’t posted much here and is also why I only just noticed that this blog has been awarded the Premios Dardos blog award by Libby at Blessings and Glory. Many thanks!

premios_dardo1

Apparently ““Premio Dardos” means “prize darts” in Italian, and the award is given in recognition of cultural, ethical, literary, and personal values transmitted in the form of creative and original writing.”

I am particularly honoured and grateful to have received the award from Libby as Blessings and Glory was one of the first blogs I started following when I started Welcome To Illinois and I really respect the way she is using her blog to provide a service for parents who are new to the world of Down’s syndrome (which was one of the main reasons I started writing this thing, even if it doesn’t come across that way). Also I think G looks quite a bit like Charlie (and not in a DS type way) while Henry is one of my favourite people I have discovered since I started the blog. For example:

“Henry we don’t swear inside this house!”

pause

“Can, I swear outside?”

The other reason I am glad I got this award from Libby is that she removed the requirement to answer 17 questions about myself before passing it on. Instead I just have to

  1. Accept the award by posting it on your blog along with the name of the person that has granted the award and a link to his/her blog.
  2. Pass the award along to blogs you find worthy of this acknowledgment.

That being the case I hereby award the Premios Dardos blog award to:

I only started following Girl in a Party Hat recently and was sad to discover that it is only designed to last a year and should end in May. I hope Amy changes her mind as I love the way she tackles challenging subjects in an entertaining way:
Does Dopey have Down syndrome?
Can a Kid with Down syndrome Look Like Kate Hudson?
Mamas, Don’t Let Your Babies with Down syndrome Grow Up to be Prom Queen (or King)
And she’s always insightful – nearly as insightful as her daughters.

I’ve always had a soft spot for Vince since I realised he was born on the same day as J. That and the fact that he is completely adorable. I always look out for updates from Christina as she is refreshingly honest and direct about Down’s syndrome and the challenges it poses, as well as the joy she gets from her family. She is also no less insightful and always has good advice. To wit:

“If you google something like: my friend had a baby with DS, help they got a DS baby, my friend is so sad she had a baby with DS, etc this is my tip: Pick up Road Map to Holland by Jennifer Graf Groneberg and read it! Don’t give it to your friend yet, YOU read it, and then you call her up [after of course congratulating them to the baby in the first place].”

This is great. Wise words from Annabelle:

“What is Down syndrome”? You may ask. Well I will tell you. You see, if you have Down syndrome, you have one extra chromosome (which is a thread like looking thing that tells your body what you look like and other things.) in your body. Which causes problems. See, I can’t really tell you why it causes problems. Because scientists have not figured it out yet. But I know that I can tell you lots of other things about Down syndrome! When you have Down syndrome you look a little different from every body else. And it takes a little longer to learn as well as you and me do. But even though they look different, it doesn’t mean that you can’t like the same things and be friends. I even know someone that has Down syndrome! And I know her really well because she is my sister! Her name is Sophie. I hardly notice Sophie even has Down syndrome. She knows lots of cool and elegant words like “I think not!” She really cracks me up! And Sophie has lots of friends in kindergarden! And all of her friends like her alot! Sophie has special therapies to help her up! She has a great life! the end

This is great. Wise words from Annabelle:

“What is Down syndrome”? You may ask. Well I will tell you. You see, if you have Down syndrome, you have one extra chromosome (which is a thread like looking thing that tells your body what you look like and other things.) in your body. Which causes problems. See, I can’t really tell you why it causes problems. Because scientists have not figured it out yet. But I know that I can tell you lots of other things about Down syndrome! When you have Down syndrome you look a little different from every body else. And it takes a little longer to learn as well as you and me do. But even though they look different, it doesn’t mean that you can’t like the same things and be friends. I even know someone that has Down syndrome! And I know her really well because she is my sister! Her name is Sophie. I hardly notice Sophie even has Down syndrome. She knows lots of cool and elegant words like “I think not!” She really cracks me up! And Sophie has lots of friends in kindergarden! And all of her friends like her alot! Sophie has special therapies to help her up! She has a great life! the end

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