What is WDSD?
Down syndrome = Trisomy 21 = 3 copies of the 21st chromosome = 3/21 = March 21 = World Down Syndrome Day!
Wednesday, March 21, 2012
Special Exposure Wednesday/WDSD
What is WDSD?
Down syndrome = Trisomy 21 = 3 copies of the 21st chromosome = 3/21 = March 21 = World Down Syndrome Day!
Tuesday, March 20, 2012
Treasured Moment
I picked Lucas up from preschool and looked in his bin for any paperwork. Today he had a headband in his bin. I asked him why. This was our conversation.
L: "It's for Kayla."
M: "Did you get it from the treasure box?"
L: "Yeah. I picked it out for Kayla."
M: "Oh so if you picked this out of the treasure box for Kayla then you didn't get anything for yourself?"
L: "I just get something every day (they don't get the treasure box every day; I think he meant each time it's his turn for the treasure box) from the treasure box and pick something for myself. I just wanted to get something for Kayla to have."
When we got home the 'mail lady' - as Lucas calls her - was just coming by so Lucas ran down the driveway to get the mail. He still had the headband in his hand and held it up to show her saying, "I got this for my sister!" So proud of himself.
Later on I asked him again why he got that from the treasure box for Kayla and he said "Because I wanted to be nice and give Kayla something and see if she will like it and wear it for a long long time."
Yeah. Definitely one of those treasured moments I'll want to remember!
L: "It's for Kayla."
M: "Did you get it from the treasure box?"
L: "Yeah. I picked it out for Kayla."
M: "Oh so if you picked this out of the treasure box for Kayla then you didn't get anything for yourself?"
L: "I just get something every day (they don't get the treasure box every day; I think he meant each time it's his turn for the treasure box) from the treasure box and pick something for myself. I just wanted to get something for Kayla to have."
When we got home the 'mail lady' - as Lucas calls her - was just coming by so Lucas ran down the driveway to get the mail. He still had the headband in his hand and held it up to show her saying, "I got this for my sister!" So proud of himself.
Later on I asked him again why he got that from the treasure box for Kayla and he said "Because I wanted to be nice and give Kayla something and see if she will like it and wear it for a long long time."
Yeah. Definitely one of those treasured moments I'll want to remember!
Monday, March 19, 2012
Google Logo
Let's see if we can make this happen! Someone named Mark Jones created this artwork. Just attach it in an email and send it to proposals AT google dot com and let them know you'd like it to be featured on Mar 21 for World Down Syndrome Day.
Sunday, March 18, 2012
Just One Question
35 adults were developmental disabilities were all asked the same question:
"If you could change one thing about yourself, what would it be?"
I loved this video, watching their reactions, seeing them really think about this question, and their answers. So many of them with such wise answers.
If this question was asked to 35 typical adults how quick would we be to respond? In the snap of a finger 'we' would probably have any number of things to name that we would change.
Their answers could teach so many of us a lesson. It's well worth the 8 minutes to watch it. Trust me.
The film's production crew includes 8 people with developmental disabilities.
Please take a moment to leave a comment on my Do Something Extra post. For every comment I will donate $1 to the Plus 15 campaign on Mar 21 for World Down Syndrome Day (I really thought I would be donating more than $12 :) !) All donations that day will be matched 3:1. I'm also having a giveaway on that post as well!
"If you could change one thing about yourself, what would it be?"
I loved this video, watching their reactions, seeing them really think about this question, and their answers. So many of them with such wise answers.
If this question was asked to 35 typical adults how quick would we be to respond? In the snap of a finger 'we' would probably have any number of things to name that we would change.
Their answers could teach so many of us a lesson. It's well worth the 8 minutes to watch it. Trust me.
The film's production crew includes 8 people with developmental disabilities.
Please take a moment to leave a comment on my Do Something Extra post. For every comment I will donate $1 to the Plus 15 campaign on Mar 21 for World Down Syndrome Day (I really thought I would be donating more than $12 :) !) All donations that day will be matched 3:1. I'm also having a giveaway on that post as well!
Friday, March 16, 2012
Blogiversary, WDSD, Something Extra
Happy blogiversary to this little blog o'mine! Six years. I've been blogging for six years. Can it really be that long? Same thing I say about my kids ... can they really be that old already?
I started blogging when Kayla was 2 years and 8 months old. Aww look at her back then!
And look at her now:
She'll be 9 this summer. One more year of the single digit birthday. That doesn't seem possible!
I've met some wonderful people through blogging - and even some "IRL". Although a lot of the people I 'met' the first couple of years don't seem to be blogging anymore; I often wonder what happened to them. Also seems most of us have migrated over to FB!
What's a blogiversary without a giveaway, right? I've been thinking about my post yesterday and the NDSS's challenge to "Do Something Extra" for World Down Syndrome Day.
I finally figured out what I'm going to do to celebrate individuals with Down syndrome (besides going to Kayla's school and talking with her class!).
My giveaway will be from the businesses of two individuals who have Down syndrome. One winner (picked on 3/21) will win a set of cards from Kardz by Kenz and another winner will receive a pendant from KK Glass Art. I bought a pendant from her booth this past summer at the NDSC convention and get so many comments on it!
But that's not all.
For doing something extra I will be making a donation to the Plus 15 campaign, because on Mar 21 my donation will be matched 3:1.
And you all are going to help me make that donation ... or the amount anyway! I will donate a dollar for every comment left on this post. So if I get 25, then my $25 donation will turn into $100.
Since this is about World Down Syndrome Day I'd love it if your comment would include something about Down syndrome ... like if your perception of Ds has changed (hopefully for the positive!) since reading my blog and "knowing" Kayla. Or what you might have learned from us. If you've been a long-time reader I'd love to know if you're still lurking/reading! And if you're a newer reader I'd love to know how you found my blog! Or if you have any questions for me, please feel free to ask!
So, happy blogiversary and happy World Down Syndrome Day.
Now, get to commenting! :-)
I started blogging when Kayla was 2 years and 8 months old. Aww look at her back then!
And look at her now:
She'll be 9 this summer. One more year of the single digit birthday. That doesn't seem possible!
I've met some wonderful people through blogging - and even some "IRL". Although a lot of the people I 'met' the first couple of years don't seem to be blogging anymore; I often wonder what happened to them. Also seems most of us have migrated over to FB!
What's a blogiversary without a giveaway, right? I've been thinking about my post yesterday and the NDSS's challenge to "Do Something Extra" for World Down Syndrome Day.
I finally figured out what I'm going to do to celebrate individuals with Down syndrome (besides going to Kayla's school and talking with her class!).
My giveaway will be from the businesses of two individuals who have Down syndrome. One winner (picked on 3/21) will win a set of cards from Kardz by Kenz and another winner will receive a pendant from KK Glass Art. I bought a pendant from her booth this past summer at the NDSC convention and get so many comments on it!
But that's not all.
For doing something extra I will be making a donation to the Plus 15 campaign, because on Mar 21 my donation will be matched 3:1.
And you all are going to help me make that donation ... or the amount anyway! I will donate a dollar for every comment left on this post. So if I get 25, then my $25 donation will turn into $100.
Since this is about World Down Syndrome Day I'd love it if your comment would include something about Down syndrome ... like if your perception of Ds has changed (hopefully for the positive!) since reading my blog and "knowing" Kayla. Or what you might have learned from us. If you've been a long-time reader I'd love to know if you're still lurking/reading! And if you're a newer reader I'd love to know how you found my blog! Or if you have any questions for me, please feel free to ask!
So, happy blogiversary and happy World Down Syndrome Day.
Now, get to commenting! :-)
Thursday, March 15, 2012
Do Something Extra
Mar 21st is World Down Syndrome Day. The date - 3/21 is significant because it represents the 3 copies of the 21st chromosomes that individuals with Down syndrome have.This date was established in 2006 by Down Syndrome International.
This is the first year that it is recognized by the United Nations. It was adopted into resolution last Nov.
The NDSS has put together this list of ideas for their Do Something Extra campaign celebrating WDSD.
Grab This Button
Here is a great opportunity to triple your monetary donations to Down syndrome research - on Mar 21 all donations made to the Down Syndrome Research and Treatment Foundation (DSRTF) will be matched 3:1! That means a $15 donation turns into $60 and $25 becomes $100. What a great way for those donations dollars to add up!
The DSRTF will also be hosting a webinar with Dr Roger Reeves (a leading researcher in the area of Down syndrome) of Johns Hopkins University. The webinar will be at 1:00 ET.
I'm going to Kayla's school and give a talk to her class about Down syndrome and reading the class a book. I hope the kids don't have too many hard questions for me!
This is the first year that it is recognized by the United Nations. It was adopted into resolution last Nov.
The NDSS has put together this list of ideas for their Do Something Extra campaign celebrating WDSD.
Grab This ButtonHere is a great opportunity to triple your monetary donations to Down syndrome research - on Mar 21 all donations made to the Down Syndrome Research and Treatment Foundation (DSRTF) will be matched 3:1! That means a $15 donation turns into $60 and $25 becomes $100. What a great way for those donations dollars to add up!
The DSRTF will also be hosting a webinar with Dr Roger Reeves (a leading researcher in the area of Down syndrome) of Johns Hopkins University. The webinar will be at 1:00 ET.
I'm going to Kayla's school and give a talk to her class about Down syndrome and reading the class a book. I hope the kids don't have too many hard questions for me!
Wednesday, March 14, 2012
Tuesday, March 13, 2012
Wrongful Birth
The big news in the Down syndrome community is the wrongful birth lawsuit from an Oregon couple brought against their doctor and hospital. 'Wrongful birth' because their daughter was born with Down syndrome after prenatal tests indicated she wouldn't be. The jury - all 12 of them - sided with the couple and awarded them $2.9 million - for the lifetime care of their daughter. (An article from 2 years ago when they filed the suit says they were seeking more than $14M. This includes compensation for the father "for the effect his daughter has had on his relationship with his wife." Can you imagine reading that about yourself?)
I am trying really hard to not judge this couple ... because I'm not in their shoes and didn't go through what they went through. Here are some bullet statements as I understand this lawsuit:
- This wasn't a planned pregnancy; it was a surprise, or accident
- The mom was 34 at the time so they specifically opted for an early diagnostic prenatal test (the CVS)
- If there were any abnormalities found they planned to terminate the pregnancy
- CVS came back normal
- Couple of markers on subsequent u/s indicated a possibilty of Ds, but they were assured everything was fine and not advised to get an amnio
- Their daughter was born and, understandably after a 'normal' CVS result, they were shocked to be told she did in fact have Down syndrome
- Their lawyer contends the doctor who performed the CVS either took too small of a sample to be valid, or he took tissue from the mother and not the fetus
- They also contend the lab didn't realize they were testing maternal tissue
- The doctor's lawyer contends that since their daughter has Mosaic Down syndrome not all of the cells will show a triplicate of the 21st chromosome and that's why the CVS didn't pick it up
- Their lawyer contends that enough of her cells do contain the triplicate and that a percentage would have shown up in the CVS
I have no idea, or if there is any proof, that the doctor took the tissue from the mother or the fetus.
Playing Devil's Advocate for just a minute here - IF in fact the doctor DID take the tissue from the mother and not the fetus then yes, he screwed up. He made an error and the test was not performed correctly and this couple was going to make a decision based on the results of a test they believed to be performed correctly. So in theory I guess they could sue for malpractice? Or negligence?
Would it not be something similar to have a biopsy for cancer and something happened with the biopsy or tissue and be given incorrect results? Wouldn't someone sue for that?
So I can, in a way, see why they would be upset about a test being performed improperly (again IF that is actually what happened) and have the results be completely opposite of what they were expecting.
However, having said all that, it really, really bothers me that this lawsuit is filed under a 'wrongful birth.' How can you say a child's birth is wrong? Oh, because had they known she has Down syndrome they would have aborted her. They had to say that in court, or in their lawsuit.
How awful for a child (she's only 4 now, but who knows if one day she'll realize what happened or not?) to know that she was so unwanted (and again it wasn't a planned pregnancy) that her parents filed a wrongful birth lawsuit. That your birth was wrong. That your whole essence, your whole being, your whole existence, is wrong?
According the article there also seemed to be a bit of outdated and/or misinformation given to the jurors about Down syndrome.
They were awarded nearly three million dollars, money to "cover the estimated extra lifetime costs of caring for a child with Down syndrome."
I'd love to know how they reached that monetary figure as money needed for the 'extra lifetime' costs of caring for a child with Ds. Really? That much? I'm sorry, but I just don't see it costing Joe and I over a million dollars to raise and care for Kayla over her lifetime.
It doesn't say this child has any significant medical needs or other health issues. What this does is perpetuate a false notion that individuals with Ds are a financial burden to their families and society. And I don't believe that at all. Yet that is not what the rest of society is going to think when they read the articles on this outcome. Couples will continue to feel justified in using that as a reason to terminate their pregnancy - when it is inaccurate.
More inaccuracies: Experts testified that she will continue to need speech and physical therapy and face a concerning list of possible medical problems over her lifetime. Professionals have told the Levys that she will likely never be able to live independently, or earn a living.
Who are these experts and professionals? Where are they getting their information? This is what the court decided was reason enough to justify a nearly $3M verdict?
She will continue to need speech and physical therapy ... but for how long? I don't know of adults w/Ds still receiving these therapies (not saying they don't, just if they do I guess it isn't common knowledge.) She is 4, so from birth to three she should've been receiving therapy through her states Early Childhood Intervention program. I don't presume to know how this works in every state, but every state has this program and it should be free to the families, or at the minimum very low-cost co-payment, if at all. We never paid for any therapy Kayla received through ECI. Once the child turns 3 they (usually) continue to qualify for services through the public school system. Again, that is free.
There might be instances where the parent chooses to receive school therapy and private therapy in the home or a therapy center that may incur out-of-pocket expenses, but there are usually programs to help off-set that as well ... like if your child is on a state Medicaid waiver.
Experts also testified she will face a "concerning list of possible medical problems over her lifetime." The keyword to me is 'possible.' How can you award compensation for possible medical problems? What is this 'concerning' list of medical problems? Any one of us could face a list of 'possible' medical problems.
Then there are the professionals who told the parents she will likely never be able to live independently, or earn a living.
How do they know that? I don't know the percentage of adults with Ds who do live independently, or even semi-independently, and/or earn a living. It might be a small percentage, but it is still a percentage. It IS possible. I'm sure the percentage of adults with Ds who are earning a living today is much higher than the percentage was 20 years ago.
With the continued research and advancement in medical care there are much more opportunities for individuals with Ds to live on their own, or with some help. I can only imagine that the percentage will continue to rise for the kids born now. I can only imagine in 20 years life will continue to improve for those born with Down syndrome. I'd say by the time their daughter reaches adulthood she will probably have just as much chance to live on her own and earn a living.
So much false and negative information appears to have been given out in that courtroom. What a bleak, hopeless picture those 'experts' and 'professionals' painted of life raising a child with Down syndrome. What a disservice done to all these families who have been advocating for a more accurate portrayal of what life is like.
Kayla's future (just as Lucas's) is unknown. Yes we do have some legitimate fears about this unknown, about what she'll be capable of, but alongside the fear is hope. Hope and promise for her future.
If this couple was so against having a child with Down syndrome, why did they not place her for adoption (not saying that is an easy decision to make) but if they were so worried about her future why not let another family raise her.
And then there is this. They say they love their daughter just as much as their older 2 sons (although why did one article feel the need to mention that one of their sons scored in the 99th percentile on standardized tests - what does that have to do with anything?). They said they will give her every opportunity as their sons. So why not just say "thank goodness we didn't know you had Ds because we would have aborted. Thank goodness we didn't know because we wouldn't have you now. We wouldn't have this opportunity to know and love and raise you. Thank goodness you are here now because we would have missed out on having you in our family, and this is where you were supposed to be."
And if they supposedly need all those millions to raise her over her lifetime then who is going to monitor the spending of that money? If that is what they need for their daughter then I hope it is stipulated to go in to a special-needs trust so every penny of that money is indeed allocated specifically for her needs.
I am trying really hard to not judge this couple ... because I'm not in their shoes and didn't go through what they went through. Here are some bullet statements as I understand this lawsuit:
- This wasn't a planned pregnancy; it was a surprise, or accident
- The mom was 34 at the time so they specifically opted for an early diagnostic prenatal test (the CVS)
- If there were any abnormalities found they planned to terminate the pregnancy
- CVS came back normal
- Couple of markers on subsequent u/s indicated a possibilty of Ds, but they were assured everything was fine and not advised to get an amnio
- Their daughter was born and, understandably after a 'normal' CVS result, they were shocked to be told she did in fact have Down syndrome
- Their lawyer contends the doctor who performed the CVS either took too small of a sample to be valid, or he took tissue from the mother and not the fetus
- They also contend the lab didn't realize they were testing maternal tissue
- The doctor's lawyer contends that since their daughter has Mosaic Down syndrome not all of the cells will show a triplicate of the 21st chromosome and that's why the CVS didn't pick it up
- Their lawyer contends that enough of her cells do contain the triplicate and that a percentage would have shown up in the CVS
I have no idea, or if there is any proof, that the doctor took the tissue from the mother or the fetus.
Playing Devil's Advocate for just a minute here - IF in fact the doctor DID take the tissue from the mother and not the fetus then yes, he screwed up. He made an error and the test was not performed correctly and this couple was going to make a decision based on the results of a test they believed to be performed correctly. So in theory I guess they could sue for malpractice? Or negligence?
Would it not be something similar to have a biopsy for cancer and something happened with the biopsy or tissue and be given incorrect results? Wouldn't someone sue for that?
So I can, in a way, see why they would be upset about a test being performed improperly (again IF that is actually what happened) and have the results be completely opposite of what they were expecting.
However, having said all that, it really, really bothers me that this lawsuit is filed under a 'wrongful birth.' How can you say a child's birth is wrong? Oh, because had they known she has Down syndrome they would have aborted her. They had to say that in court, or in their lawsuit.
How awful for a child (she's only 4 now, but who knows if one day she'll realize what happened or not?) to know that she was so unwanted (and again it wasn't a planned pregnancy) that her parents filed a wrongful birth lawsuit. That your birth was wrong. That your whole essence, your whole being, your whole existence, is wrong?
According the article there also seemed to be a bit of outdated and/or misinformation given to the jurors about Down syndrome.
They were awarded nearly three million dollars, money to "cover the estimated extra lifetime costs of caring for a child with Down syndrome."
I'd love to know how they reached that monetary figure as money needed for the 'extra lifetime' costs of caring for a child with Ds. Really? That much? I'm sorry, but I just don't see it costing Joe and I over a million dollars to raise and care for Kayla over her lifetime.
It doesn't say this child has any significant medical needs or other health issues. What this does is perpetuate a false notion that individuals with Ds are a financial burden to their families and society. And I don't believe that at all. Yet that is not what the rest of society is going to think when they read the articles on this outcome. Couples will continue to feel justified in using that as a reason to terminate their pregnancy - when it is inaccurate.
More inaccuracies: Experts testified that she will continue to need speech and physical therapy and face a concerning list of possible medical problems over her lifetime. Professionals have told the Levys that she will likely never be able to live independently, or earn a living.
Who are these experts and professionals? Where are they getting their information? This is what the court decided was reason enough to justify a nearly $3M verdict?
She will continue to need speech and physical therapy ... but for how long? I don't know of adults w/Ds still receiving these therapies (not saying they don't, just if they do I guess it isn't common knowledge.) She is 4, so from birth to three she should've been receiving therapy through her states Early Childhood Intervention program. I don't presume to know how this works in every state, but every state has this program and it should be free to the families, or at the minimum very low-cost co-payment, if at all. We never paid for any therapy Kayla received through ECI. Once the child turns 3 they (usually) continue to qualify for services through the public school system. Again, that is free.
There might be instances where the parent chooses to receive school therapy and private therapy in the home or a therapy center that may incur out-of-pocket expenses, but there are usually programs to help off-set that as well ... like if your child is on a state Medicaid waiver.
Experts also testified she will face a "concerning list of possible medical problems over her lifetime." The keyword to me is 'possible.' How can you award compensation for possible medical problems? What is this 'concerning' list of medical problems? Any one of us could face a list of 'possible' medical problems.
Then there are the professionals who told the parents she will likely never be able to live independently, or earn a living.
How do they know that? I don't know the percentage of adults with Ds who do live independently, or even semi-independently, and/or earn a living. It might be a small percentage, but it is still a percentage. It IS possible. I'm sure the percentage of adults with Ds who are earning a living today is much higher than the percentage was 20 years ago.
With the continued research and advancement in medical care there are much more opportunities for individuals with Ds to live on their own, or with some help. I can only imagine that the percentage will continue to rise for the kids born now. I can only imagine in 20 years life will continue to improve for those born with Down syndrome. I'd say by the time their daughter reaches adulthood she will probably have just as much chance to live on her own and earn a living.
So much false and negative information appears to have been given out in that courtroom. What a bleak, hopeless picture those 'experts' and 'professionals' painted of life raising a child with Down syndrome. What a disservice done to all these families who have been advocating for a more accurate portrayal of what life is like.
Kayla's future (just as Lucas's) is unknown. Yes we do have some legitimate fears about this unknown, about what she'll be capable of, but alongside the fear is hope. Hope and promise for her future.
If this couple was so against having a child with Down syndrome, why did they not place her for adoption (not saying that is an easy decision to make) but if they were so worried about her future why not let another family raise her.
And then there is this. They say they love their daughter just as much as their older 2 sons (although why did one article feel the need to mention that one of their sons scored in the 99th percentile on standardized tests - what does that have to do with anything?). They said they will give her every opportunity as their sons. So why not just say "thank goodness we didn't know you had Ds because we would have aborted. Thank goodness we didn't know because we wouldn't have you now. We wouldn't have this opportunity to know and love and raise you. Thank goodness you are here now because we would have missed out on having you in our family, and this is where you were supposed to be."
And if they supposedly need all those millions to raise her over her lifetime then who is going to monitor the spending of that money? If that is what they need for their daughter then I hope it is stipulated to go in to a special-needs trust so every penny of that money is indeed allocated specifically for her needs.
Friday, March 09, 2012
We Asked Parents If They Could Go Back
We asked parents if they could go back right before they had, or adopted, their child(ren) with Down syndrome, what would they tell themselves?
That was the question posed from the International Down Syndrome Coalition for Life. Parents sent in pictures of themselves and/or loved one holding up a sign with their answers... their bits of wisdom. This was turned into a beautiful video slide show to celebrate World Down Syndrome Day.
Check it out (Kayla and I are in there too!)
That was the question posed from the International Down Syndrome Coalition for Life. Parents sent in pictures of themselves and/or loved one holding up a sign with their answers... their bits of wisdom. This was turned into a beautiful video slide show to celebrate World Down Syndrome Day.
Check it out (Kayla and I are in there too!)
Thursday, March 08, 2012
Wine and Wheat
What does wine have to do with wheat? When you're a kid with Celiac disease - a lot!
Kayla was grocery shopping with me one day. I picked up a bottle of wine (darn those enticing displays for spontaneous purchases!) and Kayla said,
"Ooooh what's that?"
Me, "Wine."
Kayla, sounding excited, "Oh yeah, wine! I want wine!"
Me, "No Kayla, you can't have wine."
Kayla, sounding dejected, "Oh, it has wheat?"
I guess she is so used to hearing she can't have something because it has wheat that this was a natural connection for her to make! Sure Kayla, you can't have wine because it has wheat ... and nothing at all to do with your age! Ha!
Kayla was grocery shopping with me one day. I picked up a bottle of wine (darn those enticing displays for spontaneous purchases!) and Kayla said,
"Ooooh what's that?"
Me, "Wine."
Kayla, sounding excited, "Oh yeah, wine! I want wine!"
Me, "No Kayla, you can't have wine."
Kayla, sounding dejected, "Oh, it has wheat?"
I guess she is so used to hearing she can't have something because it has wheat that this was a natural connection for her to make! Sure Kayla, you can't have wine because it has wheat ... and nothing at all to do with your age! Ha!
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