Lucas is running in the Cooper River Bridge 10K for the second time. He wants to beat his time from last year and finish in under 50 minutes.
He also wants to continue raising money for LuMind RDS and support Down syndrome research.
Last year he raised almost $700 so this year his goal is to hit $800.
All donations will be matched 3:1 (!!!) through March 21 - World Down Syndrome Day. A $25 donation will turn in to $100 donation.
Will you please consider supporting Lucas with a donation? He will be so appreciative!
Thank you!
Cooper River Bridge Run 10K on Crowdrise
Showing posts with label World Down Syndrome Day. Show all posts
Showing posts with label World Down Syndrome Day. Show all posts
Monday, March 19, 2018
Tuesday, March 21, 2017
Not Special Needs and His First 10K
Today is World Down Syndrome Day - March 21st because people with Down syndrome have 3 copies of their 21st chromosome.
The past few years the CoorDown organization from Italy has produced some great PSAs for WDSD, and the one for this year doesn't disappoint.
It's about describing people with disabilities as having "special needs" - and although I have, and do, use that description, I haven't always felt comfortable with it. There's a nagging feeling in the back of my head when I say "special needs" ... which I blogged about 5 years ago in "That Word Special."
I was glad to see CoorDown put a video out that mirrors my thoughts: Not Special Needs, Human Needs. Kayla doesn't have special needs - she has human needs.
And another note on World Down Syndrome Day - as in years past, all donations made today to LuMind RDS will be matched 3:1. How great is that? A $25 donation will be matched with $75 turning that donation into $100.
In more news - Lucas is following in Joe's running shoes. He's running his first 10K in the Cooper River Bridge Run on April 1st. And just like Joe, Lucas is representing LuMind and raising money for Down syndrome research. If you're able to support him in reaching his goal he would really appreciate it! Any donation made today through his Crowdrise page will also be matched 3:1 as the donation goes to LuMind. Thanks for any support!
The past few years the CoorDown organization from Italy has produced some great PSAs for WDSD, and the one for this year doesn't disappoint.
It's about describing people with disabilities as having "special needs" - and although I have, and do, use that description, I haven't always felt comfortable with it. There's a nagging feeling in the back of my head when I say "special needs" ... which I blogged about 5 years ago in "That Word Special."
I was glad to see CoorDown put a video out that mirrors my thoughts: Not Special Needs, Human Needs. Kayla doesn't have special needs - she has human needs.
And another note on World Down Syndrome Day - as in years past, all donations made today to LuMind RDS will be matched 3:1. How great is that? A $25 donation will be matched with $75 turning that donation into $100.
In more news - Lucas is following in Joe's running shoes. He's running his first 10K in the Cooper River Bridge Run on April 1st. And just like Joe, Lucas is representing LuMind and raising money for Down syndrome research. If you're able to support him in reaching his goal he would really appreciate it! Any donation made today through his Crowdrise page will also be matched 3:1 as the donation goes to LuMind. Thanks for any support!
Thursday, March 24, 2016
Recapping our Random Acts of Kindness
It wasn't as easy to do the Random Acts of Kindness for World Down Syndrome Day that we did last year; this year I had to wait until the kids were out of school and then we had a small window of opportunity before Kayla had ballet class.
We made the most of it with 4 gift cards to give out.
We stopped by Game Stop on our way to a quick dinner at Chick-Fil-A. At Game Stop Kayla gave her card to a father who was with his 2 sons. His younger son said, "so that's why you're wearing those shirts!" and I explained about the date and the chromosomes and the older son said, "yeah I learned about that in biology. Cool shirts!"
Lucas put his gift card in between some games for someone to find.
At CFA Lucas gave his card to a guy who said he really likes seeing people with Down syndrome out in their communities; has a brother who is "non-verbal and high-functioning" but doesn't have Down syndrome, so he has a connection to the disability community.
Kayla gave her card to a lady who was really touched and asked if she could give Kayla a hug in return as her own RAOK.
The kids really enjoy doing this and I'm looking forward to continuing this tradition year after year!
We made the most of it with 4 gift cards to give out.
We stopped by Game Stop on our way to a quick dinner at Chick-Fil-A. At Game Stop Kayla gave her card to a father who was with his 2 sons. His younger son said, "so that's why you're wearing those shirts!" and I explained about the date and the chromosomes and the older son said, "yeah I learned about that in biology. Cool shirts!"
Lucas put his gift card in between some games for someone to find.
At CFA Lucas gave his card to a guy who said he really likes seeing people with Down syndrome out in their communities; has a brother who is "non-verbal and high-functioning" but doesn't have Down syndrome, so he has a connection to the disability community.
Kayla gave her card to a lady who was really touched and asked if she could give Kayla a hug in return as her own RAOK.
The kids really enjoy doing this and I'm looking forward to continuing this tradition year after year!
Monday, March 21, 2016
WDSD: My Friends My Community
Today is World Down Syndrome Day: Mar 21, also written as 3/21, chosen because people with Down syndrome have 3 copies of the 21st chromosome. Trisomy 21 in medical terms.
The theme, or Call To Action, from Down Syndrome International for this year's WDSD is #MyFriendsMyCommunity: The benefits of inclusive environments for today's children and tomorrow's adults. They ask that you show the world "how persons with Down syndrome live and participate in the community alongside family, friends, peers and the public."
The more that today's children with Down syndrome are fully included in their schools and communities, the more acceptance they will have from their peers when they reach adulthood. The more inclusive settings now ... the more commonplace it will be for their future.
One of the ways individuals with Down syndrome are participating in their communities and with their peers are through higher education programs at colleges and universities across the states. Check out Think College for a list of participating programs in your state.
Students in these programs are taking some academic courses along with their peers, continuing to improve on independent life skills, and gain employment skills; along with this experience comes a full college tuition as well.
Think College provides a great list of resources for how to pay for college. One of those ways includes scholarships; there are several organizations devoted to giving scholarships to students with Down syndrome such as Ruby's Rainbow.
Ruby's Rainbow awards scholarships up to $3000 per selected student. Their 321 Pledge is simple: donate $21, pledge to be kind and considerate to all people, and ask 3 people to do the same. Will 3 people join me in donating $21 to this fantastic scholarship opportunity for people with Down syndrome?
Don't forget to also leave a comment on my 10 years of blogging post (even if the comment is just saying "Happy WDSD!") For every comment I'm donating $1 to LuMind Research Down Syndrome where donations are matched 3:1 for WDSD.
The theme, or Call To Action, from Down Syndrome International for this year's WDSD is #MyFriendsMyCommunity: The benefits of inclusive environments for today's children and tomorrow's adults. They ask that you show the world "how persons with Down syndrome live and participate in the community alongside family, friends, peers and the public."
The more that today's children with Down syndrome are fully included in their schools and communities, the more acceptance they will have from their peers when they reach adulthood. The more inclusive settings now ... the more commonplace it will be for their future.
One of the ways individuals with Down syndrome are participating in their communities and with their peers are through higher education programs at colleges and universities across the states. Check out Think College for a list of participating programs in your state.
Students in these programs are taking some academic courses along with their peers, continuing to improve on independent life skills, and gain employment skills; along with this experience comes a full college tuition as well.
Think College provides a great list of resources for how to pay for college. One of those ways includes scholarships; there are several organizations devoted to giving scholarships to students with Down syndrome such as Ruby's Rainbow.
Ruby's Rainbow awards scholarships up to $3000 per selected student. Their 321 Pledge is simple: donate $21, pledge to be kind and considerate to all people, and ask 3 people to do the same. Will 3 people join me in donating $21 to this fantastic scholarship opportunity for people with Down syndrome?
Don't forget to also leave a comment on my 10 years of blogging post (even if the comment is just saying "Happy WDSD!") For every comment I'm donating $1 to LuMind Research Down Syndrome where donations are matched 3:1 for WDSD.
Saturday, March 19, 2016
A Decade Of Blogging
March 16 marked ten years of blogging ... 10! (insert fireworks, confetti, and poppers)
How did that go by so fast?
When I started blogging Kayla wasn't quite 3 yet, we livec in NM, and Lucas wasn't even born.
We've moved twice since then, Joe's also deployed twice and retired from the military, Kayla will be a teenagerthis summer, and Lucas is 8.
A couple of years ago I thought I might be finished blogging, but I'm still hanging around.
When Kayla turned 10 I wrote about my experiences thus far of raising a child with Down syndromeand I still feel the same after blogging for 10 years. No great life lessons from me, no profound knowledge of what life is like for our family through 10 years of blogging. We are, simply, just a family.
I don't feel like I have much to add, at this point in our lives, about Down syndrome. Maybe when Kayla is transitioning to high school ... or out of high school ... there will be a lot of transition topics to blog about. It seems so far away, but I know it will be here before we know it. For now I will keep raising awareness, and acceptance, about Down syndrome.
As I mentioned in yesterday's post, Monday is World Down Syndrome Day. Not just here in the United States, but in places all over the world people are celebrating individuals with Down syndrome. Can you imagine that? It really wasn't that long ago that babies with Down syndrome were shuttered away in institutions and their life span wasn't even 10 years. Even though it seems we've come so far since then, and in a lot of ways we have, there is still so much more progress to be made. Babies with Down syndrome are still being shuttered away in orphanages and institutions in Eastern Europe.
Even though progress has been made, Down syndrome continues to be the least funded condition by the NIH despite being the most common genetic disorder. Important research is happening by grants provided by other organizations. Research is so important because you don't know what you don't know ... there are connections with Down syndrome and cancer, Down syndrome and autoimmune diseases, Down syndrome and Alzheimer's. Why not research and find out what is going on, what is the connection, how to help people with Down syndrome and the rest of the population?
One of those wonderful organizations focusing on research is the LuMind Research Down Syndrome Foundation. Once again all donations made to LuMind for WDSD will be matched 3:1.Your $25 donation will turn into $100. This 3:1 matching for WDSD starts TODAY, Saturday, Mar 19 and goes through Mar 21. So three days' worth of donations will be tripled.
A few years ago I started donating $1 for every comment on my blogging anniversary post to LuMind for WDSD where my donation will be matched 3:1 and I am doing that this year as well ... so comment away on this post!
I'd also like to put out a little challenge to any readers, on this, my decade anniversary of blogging, I'm hoping that 21 people will consider also donating to LuMind and have your donations matched 3:1. Donate $10 for 10 years of blogging, or $21 for the extra 21st chromosome. Donate in honor of Kayla, or someone else you know with Down syndrome.
As always, thanks for reading and following along on our journey.
How did that go by so fast?
When I started blogging Kayla wasn't quite 3 yet, we livec in NM, and Lucas wasn't even born.
We've moved twice since then, Joe's also deployed twice and retired from the military, Kayla will be a teenagerthis summer, and Lucas is 8.
A couple of years ago I thought I might be finished blogging, but I'm still hanging around.
When Kayla turned 10 I wrote about my experiences thus far of raising a child with Down syndromeand I still feel the same after blogging for 10 years. No great life lessons from me, no profound knowledge of what life is like for our family through 10 years of blogging. We are, simply, just a family.
I don't feel like I have much to add, at this point in our lives, about Down syndrome. Maybe when Kayla is transitioning to high school ... or out of high school ... there will be a lot of transition topics to blog about. It seems so far away, but I know it will be here before we know it. For now I will keep raising awareness, and acceptance, about Down syndrome.
As I mentioned in yesterday's post, Monday is World Down Syndrome Day. Not just here in the United States, but in places all over the world people are celebrating individuals with Down syndrome. Can you imagine that? It really wasn't that long ago that babies with Down syndrome were shuttered away in institutions and their life span wasn't even 10 years. Even though it seems we've come so far since then, and in a lot of ways we have, there is still so much more progress to be made. Babies with Down syndrome are still being shuttered away in orphanages and institutions in Eastern Europe.
Even though progress has been made, Down syndrome continues to be the least funded condition by the NIH despite being the most common genetic disorder. Important research is happening by grants provided by other organizations. Research is so important because you don't know what you don't know ... there are connections with Down syndrome and cancer, Down syndrome and autoimmune diseases, Down syndrome and Alzheimer's. Why not research and find out what is going on, what is the connection, how to help people with Down syndrome and the rest of the population?
One of those wonderful organizations focusing on research is the LuMind Research Down Syndrome Foundation. Once again all donations made to LuMind for WDSD will be matched 3:1.Your $25 donation will turn into $100. This 3:1 matching for WDSD starts TODAY, Saturday, Mar 19 and goes through Mar 21. So three days' worth of donations will be tripled.
A few years ago I started donating $1 for every comment on my blogging anniversary post to LuMind for WDSD where my donation will be matched 3:1 and I am doing that this year as well ... so comment away on this post!
I'd also like to put out a little challenge to any readers, on this, my decade anniversary of blogging, I'm hoping that 21 people will consider also donating to LuMind and have your donations matched 3:1. Donate $10 for 10 years of blogging, or $21 for the extra 21st chromosome. Donate in honor of Kayla, or someone else you know with Down syndrome.
As always, thanks for reading and following along on our journey.
Friday, March 18, 2016
RAOK for WDSD
Monday, Mar 21st, is World Down Syndrome Day.
Last year a number of Down syndrome organizations collaborated on the idea of Random Acts of Kindness on WDSD while also spreading awareness and acceptance.
With WDSD falling on a Saturday last year we spent a busy day doing numerous RAOK and had a great time. But with Leap Year this year WDSD is on a Monday and with kids in school (not Spring Break here yet) we won't be able to get out and do as much as we did last year. I've still got a few things planned for us to do when they get home from school, so we'll still get out and have some fun surprising a few people with some RAOK.
Unfortunately with Kayla being in a private school this year and wearing a uniform she won't be able to wear her WDSD awareness shirt to school ... bummer.
Here is the scoop on participating in the RAOK. You'll find some pre-designed postcards that you can give out with your RAOK and an idea list of things you can do.
Try and capture your RAOK in photos and use #wdsd16 when sharing on social media.
We did do an early RAOK a couple of weekends ago. Just like last year for his birthday, Lucas' elected to ask for donations in lieu of gifts. This year he asked for pet toys so he could make a donation to the local animal shelter.
We also had a nice conversation about getting the donations instead of toys for himself and he said it made him feel good and he was happier to have all these pet toys and food than if he would have received toys. I told him he just learned what "it's better to give than receive" is all about. On our way home, just like last year, he said his heart felt "good and happy."
I'm so proud of him; I don't remember being that giving at his age.
Last year a number of Down syndrome organizations collaborated on the idea of Random Acts of Kindness on WDSD while also spreading awareness and acceptance.
With WDSD falling on a Saturday last year we spent a busy day doing numerous RAOK and had a great time. But with Leap Year this year WDSD is on a Monday and with kids in school (not Spring Break here yet) we won't be able to get out and do as much as we did last year. I've still got a few things planned for us to do when they get home from school, so we'll still get out and have some fun surprising a few people with some RAOK.
Unfortunately with Kayla being in a private school this year and wearing a uniform she won't be able to wear her WDSD awareness shirt to school ... bummer.
Here is the scoop on participating in the RAOK. You'll find some pre-designed postcards that you can give out with your RAOK and an idea list of things you can do.
Try and capture your RAOK in photos and use #wdsd16 when sharing on social media.
We did do an early RAOK a couple of weekends ago. Just like last year for his birthday, Lucas' elected to ask for donations in lieu of gifts. This year he asked for pet toys so he could make a donation to the local animal shelter.
We also had a nice conversation about getting the donations instead of toys for himself and he said it made him feel good and he was happier to have all these pet toys and food than if he would have received toys. I told him he just learned what "it's better to give than receive" is all about. On our way home, just like last year, he said his heart felt "good and happy."
I'm so proud of him; I don't remember being that giving at his age.
Friday, March 27, 2015
A Day Filled With Random Acts Of Kindness
We had a busy day last Saturday running all over town dropping off little Random Acts of Kindness for World Down Syndrome Day. We found some neat connections with some of our recipients too.
We started in the morning by getting all this packed up and ready to go.
We had a great time and I think the kids really enjoyed making other people's days by giving them unexpected gifts.
We started in the morning by getting all this packed up and ready to go.
At Lucas' soccer game Kayla gave out a couple small gifts to two girls.
We went to Chick-Fil-A and gave out two vanilla iced coffees
We left this gift card for free Chicken Minis on the table for someone to find.
We went to the animal shelter and donated blankets...
...and Lucas attempted to come home with this little pup!
We went to the library and donated a book and found a little boy to give a gift to. When I explained to his mom what we were doing she said she has a friend (in another state) who has a son with Down syndrome and she's been posting all about the RAK for WDSD. How cool that she was aware of this from her friend's posts ... and was the recipient of a RAK herself!
Went through the drive thru at McDonald's and asked to have these gift cards handed out to the next two cars.
We went to Wendy's for a Frosty break ...
...and gave this sweet lady a gift card. I'm bummed this is the only picture I have; I thought I took a couple more with my phone, but this was the only one. She has a daughter named Kayla and her mom worked for ARC for 30 years.
Last stop: Fire station to donate stuffed animals for them to keep on hand for kids when needed. This guy has a nephew with autism and another guy has a 2nd cousin with Down syndrome. They just might join Kayla's team in October for the Buddy Walk!
We had a great time and I think the kids really enjoyed making other people's days by giving them unexpected gifts.
Wednesday, March 18, 2015
If I Had One Hundred Dollars
Going through Lucas' school folder I found this writing prompt he had on the 100th day of school.
The prompt was If had one hundred dollars ... and to write about what you would buy and why.
My sweet boy.
I love that when given this prompt the first two things he wrote about were for giving to others.
"I would give some to the LuMind (I can see that he attempted to write Foundation, but gave up on the spelling and erased it) and some people who don't have enough money to buy stuff and I would spend the rest for a new game."
So Lucas is putting his money where his mouth is, or rather, where is writing is! He is donating money to the LuMind Research Down Syndrome Foundation in honor of his sister on World Down Syndrome Day when donations are matched 3:1
All donations will be matched 3:1 during the 3-2-1 countdown to World Down Syndrome Day (donations made Wednesday through Saturday, Mar 21st, will be matched 3:1).
What better time to donate than now, when as Lucas explained in the video, you can donate $5 and an anonymous donor will match it with 15 more dollars?
Lucas wanted to know if other people would donate $5 with him so there will be a total of $20 being donated each time. So I set him up with a fundraising page if you would like to join him in donating $5 in honor of Kayla and all people with Down syndrome. Thank you!
Lucas H's Personal Page for LuMind Foundation's Personal Fundraising Center
Also, I'm donating $1 per comment on my blogging anniversary post to LuMind as well.
The prompt was If had one hundred dollars ... and to write about what you would buy and why.
My sweet boy.
I love that when given this prompt the first two things he wrote about were for giving to others.
"I would give some to the LuMind (I can see that he attempted to write Foundation, but gave up on the spelling and erased it) and some people who don't have enough money to buy stuff and I would spend the rest for a new game."
So Lucas is putting his money where his mouth is, or rather, where is writing is! He is donating money to the LuMind Research Down Syndrome Foundation in honor of his sister on World Down Syndrome Day when donations are matched 3:1
All donations will be matched 3:1 during the 3-2-1 countdown to World Down Syndrome Day (donations made Wednesday through Saturday, Mar 21st, will be matched 3:1).
What better time to donate than now, when as Lucas explained in the video, you can donate $5 and an anonymous donor will match it with 15 more dollars?
Lucas wanted to know if other people would donate $5 with him so there will be a total of $20 being donated each time. So I set him up with a fundraising page if you would like to join him in donating $5 in honor of Kayla and all people with Down syndrome. Thank you!
Lucas H's Personal Page for LuMind Foundation's Personal Fundraising Center
Also, I'm donating $1 per comment on my blogging anniversary post to LuMind as well.
Monday, March 16, 2015
A Blogging Anniversary
This is my ninth year of blogging and while there are times I think it's time to hang it up, today isn't the day.
Today I will keep up with a tradition I started a couple of years ago on my 'blogiversary' - donating $1 for every comment on this post to an organization centered on Down syndrome cognition research.
LuMind Foundation and Research Down Syndrome recently merged to become LuMind Research Down Syndrome Foundation. This is exciting news since they both shared the same mission of Down syndrome cognition research and used the same scientific advisory board. Now resources can be combined for greater power in focusing on cognition and Alzheimer research. My family has supported both organizations with Joe raising money for the RDS Runners program - which will carryover to the merged organization - I'm excited to see them become one organization.
As in years past, for World Down Syndrome Day (Mar 21st), all donations to LuMind RDS Foundation will be matched 3:1.
Please join me in celebrating not only my blog's anniversary, but celebrating Kayla on World Down Syndrome Day, by leaving a comment on this post.
Thank you for following along with our family's journey.
Today I will keep up with a tradition I started a couple of years ago on my 'blogiversary' - donating $1 for every comment on this post to an organization centered on Down syndrome cognition research.
LuMind Foundation and Research Down Syndrome recently merged to become LuMind Research Down Syndrome Foundation. This is exciting news since they both shared the same mission of Down syndrome cognition research and used the same scientific advisory board. Now resources can be combined for greater power in focusing on cognition and Alzheimer research. My family has supported both organizations with Joe raising money for the RDS Runners program - which will carryover to the merged organization - I'm excited to see them become one organization.
As in years past, for World Down Syndrome Day (Mar 21st), all donations to LuMind RDS Foundation will be matched 3:1.
Please join me in celebrating not only my blog's anniversary, but celebrating Kayla on World Down Syndrome Day, by leaving a comment on this post.
Thank you for following along with our family's journey.
Thursday, March 12, 2015
Random Acts of Kindness: World Down Syndrome Day
Several national Down syndrome organizations corroborated on a new campaign for World Down Syndrome Day: Celebrate the Love with Random Acts of Kindness.
A webinar was presented to outline this campaign and to show the documents that were created to assist in spreading RAOK and information about Down syndrome. If you would like to watch a recording of the webinar click here.
Here is how it works: 1. On March 21st, wear your favorite shirt that celebrates our Down syndrome community. 2. Choose an act of kindness. We suggest trying for 1-3 acts of kindness on WDSD15. 3. Print out the WDSD postcard and give out with the Random Act of Kindness. 4. Take pictures of your random acts and post them on social media pages with the hashtag #WDSD15.
There is a WDSD Random Acts of Kindness group that you can join to get more ideas about what other people are doing for RAOK. Under the "Files" section of that group (not sure if the link works directly, or if you have to join the group to see the files), there are downloads available for printing 4 postcards per page; download also available in Publisher so you can edit the back of it with your local Down syndrome organization, or just personalize it with your favorite Down syndrome resource.
Organizations involved with this campaign:
International Down Syndrome Coalition
National Down Syndrome Congress
LuMind Research Down Syndrome Foundation
Global Down Syndrome Foundation
National Down Syndrome Society
International Mosaic Down Syndrome Association
Down Syndrome Affiliates in Action
A webinar was presented to outline this campaign and to show the documents that were created to assist in spreading RAOK and information about Down syndrome. If you would like to watch a recording of the webinar click here.
Here is how it works: 1. On March 21st, wear your favorite shirt that celebrates our Down syndrome community. 2. Choose an act of kindness. We suggest trying for 1-3 acts of kindness on WDSD15. 3. Print out the WDSD postcard and give out with the Random Act of Kindness. 4. Take pictures of your random acts and post them on social media pages with the hashtag #WDSD15.
There is a WDSD Random Acts of Kindness group that you can join to get more ideas about what other people are doing for RAOK. Under the "Files" section of that group (not sure if the link works directly, or if you have to join the group to see the files), there are downloads available for printing 4 postcards per page; download also available in Publisher so you can edit the back of it with your local Down syndrome organization, or just personalize it with your favorite Down syndrome resource.
Organizations involved with this campaign:
International Down Syndrome Coalition
National Down Syndrome Congress
LuMind Research Down Syndrome Foundation
Global Down Syndrome Foundation
National Down Syndrome Society
International Mosaic Down Syndrome Association
Down Syndrome Affiliates in Action
Monday, March 09, 2015
A Day In The Life: World Down Syndrome Day
World Down Syndrome Day is recognized on March 21; the date chosen because 3/21 is also 3(copies of)/21(st chromosome).
Last year I participated in a blog hop sharing what a day is like in the life of a loved one with Down syndrome. I shared about a typical day in Kayla's life with a short video clip of her describing her day. (Although the video is no longer working on that blog post since One True Media shut down.)
That blog hop evolved to a campaign with a website to share A Day In The Life With Down Syndrome for World Down Syndrome Day. A Day In The Life has partnered with Down Syndrome Diagnosis Network so this can be a valuable resource for parents receiving a prenatal diagnosis. Parents, siblings, grandparents, aunts, uncles, cousins, and most importantly, people with Down syndrome can share their story with a blog post, pictures, a video - any way they chose - to show what life is truly like for them.
You can follow @lifewithDs on Instagram and use #lifewithDs on Twitter and FB to tag your pictures, videos, and posts. Please share and spread the word about the interactive website for A Day In The Life With Down Syndrome!
Last year I participated in a blog hop sharing what a day is like in the life of a loved one with Down syndrome. I shared about a typical day in Kayla's life with a short video clip of her describing her day. (Although the video is no longer working on that blog post since One True Media shut down.)
That blog hop evolved to a campaign with a website to share A Day In The Life With Down Syndrome for World Down Syndrome Day. A Day In The Life has partnered with Down Syndrome Diagnosis Network so this can be a valuable resource for parents receiving a prenatal diagnosis. Parents, siblings, grandparents, aunts, uncles, cousins, and most importantly, people with Down syndrome can share their story with a blog post, pictures, a video - any way they chose - to show what life is truly like for them.
You can follow @lifewithDs on Instagram and use #lifewithDs on Twitter and FB to tag your pictures, videos, and posts. Please share and spread the word about the interactive website for A Day In The Life With Down Syndrome!
Tuesday, March 25, 2014
Why I Didn't Wear The Socks
Down Syndrome International (DSi) came up with a sock theme for World Down Syndrome Day. Last year it was initially called "Odd Socks" campaign. I scratched my head over that one because I didn't understand the message that was being conveyed, or that was supposed to be conveyed. I didn't want to promote a theme of "Odd" with celebrating Down Syndrome Awareness Day.
Enough people emailed DSi expressing concern about the phrase "Odd Socks." They said it was a language barrier and it just meant the mismatched pair of socks were odd, not that the person wearing them was odd. Still, odd? and socks? for Down syndrome awareness? DSi stuck with the sock theme, just changed the name to "Lots of Socks." While the name sounded better I still didn't get it.
The description of the campaign is they want people to wear lots of socks to raise awareness for Down syndrome on WDSD. Do they really want people to wear lots of socks ie more than the 2 that go on your feet? So you're supposed to decorate the outside of your clothes with ... socks? Are you supposed to wear 3 socks on your feet? My feet would get too hot for that. Or do they really want lots of people wearing socks?
And these 'lots of socks' aren't just any socks - they should be brightly colored, printed, long socks. Or wear the Lots of Socks logo on your clothing. The premise is to wear something that would get noticed so people will ask you about it and you can tell them about WDSD.
But, socks? How does that conversation look?
"So, what's with the socks? Why are you wearing those socks with your pant legs rolled up?"
"Oh this? It's World Down Syndrome Day! The date is celebrated on Mar 21st (3/21) because people with Down syndrome have 3 copies of the 21st chromosome."
"Oh. Ok. So uh, what about the socks? How does that figure in to Down Syndrome Day?"
"I don't know really. Just to get you to ask me about them so I can tell you it's World Down Syndrome Day."
Why not just hand out business cards to people stating that it's WDSD?
No one would see my socks anyway. They would be covered by my jeans and boots. I don't wear leggings so I wouldn't be able to wear socks pulled up over my leggings to show them off. I probably wouldn't notice most other people's socks either. Even if I did notice I wouldn't comment to someone about their choice of socks. I wouldn't stop a stranger to ask why they were wearing mismatched socks. More than likely I wouldn't ask an acquaintance that either. If they were a good friend of mine I would hope that they would share with me the importance of the date and not wait for me to ask about their socks.
Another thing is that tweens and teens are wearing these type of socks on a regular basis. There are places that sell mismatched socks like this one and this one. So would someone even ask about your socks when wearing these type of socks is the in thing to do anyway? Go around to any school on any day and you'll see this fashion - it's not particular to the Mar 21st date only.
What do socks have to do with Down syndrome anyway? In my mind I tried to break it down to see if I could find a connection.
The logo does sort of resemble chromosomes:
Here is a picture of Kayla's chromosomes. Glancing at this it does look like pairs of socks. Except for chromosome 21. They are the shortest and smallest of the chromosomes and don't even look like socks from this view. Just a few squiggly lines.
Also, the logo is 3 evenly paired socks (representing chromosomes?). Yes it's the number 3, but it's showing 3 pairs. Down syndrome is one extra chromosome on the 21st pair. Trisomy 21 has 3 single chromosomes; not 3 pairs. Not a total of 6. So the logo of 3 pairs of socks doesn't match up with what Trisomy 21 is either.
On the one hand this does seem to be a very visible campaign that is spreading. People are having fun with it. It does bring a sense of unity as people far and wide can, and do, participate and feel connected to a loved one who might not live in the same town. They can say, "hey, I did this for you!" My newsfeed was full of pictures of people showing their socks. Classrooms, schools and communities were involved. It's spreading. People are now talking about WDSD and wearing their 'socks'. Socks are becoming associated with Down syndrome. It's not bad publicity, but is it good publicity? Ok so people are talking about wearing their socks on 3/21 for Down syndrome, but beyond that what awareness is it spreading?
There isn't a theme to go along with "Lots of Socks" to explain why the use of the socks. It's just - wear socks for a conversation starter. If there was a catchphrase with the socks, something along the lines of "Socking it to Stereotypes" or "Put a sock in it, discrimination!" I might be able to get behind it; I might feel like there was some meaning behind the use of the socks.
But the actual theme of WDSD was "Health and Wellbeing - Access and Equality for All". How did the wearing of brightly colored, patterned, mismatched socks help promote this theme?
I have nothing against anyone who wore the socks and promoted it. There were even a couple people who tagged me in photos and I smiled because they did it as a way to show support for Kayla and other people they know who have Down syndrome. And I appreciated that.
People did have fun with it. It was easy to do. I really do get that.
I just don't get the connection, so I chose not to flaunt my socks.
Instead I made Kayla and Lucas a Tshirt that had this logo on the front
and the back said "Celebrating Differences" with the generic WDSD logo (and I completely forgot to take a picture of them that day).
I went to Kayla's class and talked about her chromosomes and read the book "High Fives and a Big Heart."
That evening we participated in RDS Runners World Down Syndrome Day Virtual Run/Walk event. 3.21 miles.
We all participate and celebrate in awareness campaigns in our own way. This is just the reason I didn't participate in the Lots of Socks campaign.
I found out about this after the fact, but one of my FB friends had a friend come up with 21 Random Acts of Kindness that their local Down syndrome group participated in. They handed out these cards when they completed one of these acts so the beneficiary would know what it was about. I love this idea. I wish I had known about it before the day ended. And I hope it's ok for me to steal this idea for next year!
Enough people emailed DSi expressing concern about the phrase "Odd Socks." They said it was a language barrier and it just meant the mismatched pair of socks were odd, not that the person wearing them was odd. Still, odd? and socks? for Down syndrome awareness? DSi stuck with the sock theme, just changed the name to "Lots of Socks." While the name sounded better I still didn't get it.
The description of the campaign is they want people to wear lots of socks to raise awareness for Down syndrome on WDSD. Do they really want people to wear lots of socks ie more than the 2 that go on your feet? So you're supposed to decorate the outside of your clothes with ... socks? Are you supposed to wear 3 socks on your feet? My feet would get too hot for that. Or do they really want lots of people wearing socks?
And these 'lots of socks' aren't just any socks - they should be brightly colored, printed, long socks. Or wear the Lots of Socks logo on your clothing. The premise is to wear something that would get noticed so people will ask you about it and you can tell them about WDSD.
But, socks? How does that conversation look?
"So, what's with the socks? Why are you wearing those socks with your pant legs rolled up?"
"Oh this? It's World Down Syndrome Day! The date is celebrated on Mar 21st (3/21) because people with Down syndrome have 3 copies of the 21st chromosome."
"Oh. Ok. So uh, what about the socks? How does that figure in to Down Syndrome Day?"
"I don't know really. Just to get you to ask me about them so I can tell you it's World Down Syndrome Day."
Why not just hand out business cards to people stating that it's WDSD?
No one would see my socks anyway. They would be covered by my jeans and boots. I don't wear leggings so I wouldn't be able to wear socks pulled up over my leggings to show them off. I probably wouldn't notice most other people's socks either. Even if I did notice I wouldn't comment to someone about their choice of socks. I wouldn't stop a stranger to ask why they were wearing mismatched socks. More than likely I wouldn't ask an acquaintance that either. If they were a good friend of mine I would hope that they would share with me the importance of the date and not wait for me to ask about their socks.
Another thing is that tweens and teens are wearing these type of socks on a regular basis. There are places that sell mismatched socks like this one and this one. So would someone even ask about your socks when wearing these type of socks is the in thing to do anyway? Go around to any school on any day and you'll see this fashion - it's not particular to the Mar 21st date only.
What do socks have to do with Down syndrome anyway? In my mind I tried to break it down to see if I could find a connection.
The logo does sort of resemble chromosomes:
Here is a picture of Kayla's chromosomes. Glancing at this it does look like pairs of socks. Except for chromosome 21. They are the shortest and smallest of the chromosomes and don't even look like socks from this view. Just a few squiggly lines.
On the one hand this does seem to be a very visible campaign that is spreading. People are having fun with it. It does bring a sense of unity as people far and wide can, and do, participate and feel connected to a loved one who might not live in the same town. They can say, "hey, I did this for you!" My newsfeed was full of pictures of people showing their socks. Classrooms, schools and communities were involved. It's spreading. People are now talking about WDSD and wearing their 'socks'. Socks are becoming associated with Down syndrome. It's not bad publicity, but is it good publicity? Ok so people are talking about wearing their socks on 3/21 for Down syndrome, but beyond that what awareness is it spreading?
There isn't a theme to go along with "Lots of Socks" to explain why the use of the socks. It's just - wear socks for a conversation starter. If there was a catchphrase with the socks, something along the lines of "Socking it to Stereotypes" or "Put a sock in it, discrimination!" I might be able to get behind it; I might feel like there was some meaning behind the use of the socks.
But the actual theme of WDSD was "Health and Wellbeing - Access and Equality for All". How did the wearing of brightly colored, patterned, mismatched socks help promote this theme?
I have nothing against anyone who wore the socks and promoted it. There were even a couple people who tagged me in photos and I smiled because they did it as a way to show support for Kayla and other people they know who have Down syndrome. And I appreciated that.
People did have fun with it. It was easy to do. I really do get that.
I just don't get the connection, so I chose not to flaunt my socks.
Instead I made Kayla and Lucas a Tshirt that had this logo on the front
I went to Kayla's class and talked about her chromosomes and read the book "High Fives and a Big Heart."
That evening we participated in RDS Runners World Down Syndrome Day Virtual Run/Walk event. 3.21 miles.
We all participate and celebrate in awareness campaigns in our own way. This is just the reason I didn't participate in the Lots of Socks campaign.
I found out about this after the fact, but one of my FB friends had a friend come up with 21 Random Acts of Kindness that their local Down syndrome group participated in. They handed out these cards when they completed one of these acts so the beneficiary would know what it was about. I love this idea. I wish I had known about it before the day ended. And I hope it's ok for me to steal this idea for next year!
Friday, March 21, 2014
A Day In The Life of Kayla
As I mentioned in this post (and you can still leave a comment on that post as I am donating $1 per comment to Plus 15 where donations are matched 3:1 today!) I am participating in a blog hop for World Down Syndrome Day. The theme we decided on is "A Day in the Life" of an individual with Down syndrome.
I took some video clips of Kayla over a couple of days and then edited those down to a 4 and a half minute (you're welcome!) video montage of what is more like "A Peek Into The Life" of Kayla.
A typical week day for Kayla:
- Wake up at 6am and do the whole morning routine of breakfast, brushing teeth and hair, getting dressed and walking to the bus stop.
- If it's Mon I pick her up after school and we go directly to vision therapy (45 min)
- If it's Tue she rides the bus home and a short time later we go back to school to pick Lucas up from Mad Science
- If it's Wed I pick her up after school and we go directly to vision therapy (45). After VT we go directly to speech therapy (30 min)
- If it's Thur she comes home on the bus (and you'll see in the 2nd video she is interested in the running club at school; if I can still sign her up for that I think they meet on Thur after school)
- If it's Fri she stays after school for Drama Club
The days we are actually home after school she either plays outside or retreats upstairs to her room/the play area and plays dress up or any number of things. She likes her space. She likes to do her own thing after school and therapies. She likes to de-stress. The rest of the time is usually rushed to fit in studying, some homework, reading, shower, eating dinner, making lunch, on the off-therapy days doing eye and speech exercises at home, pick out clothes for the next day, read a story before bed.
In this video you'll get a true peek as to what a day in her life is like: complete with rushing to get ready in the morning (it's an every.single.morning mantra "c'mon Kayla, hurry up, we're going to be late, let's go, hurry! and getting up 15 min earlier wouldn't help. She's already up at 6 as it is. We would still be doing the hurry up routine. She has no sense of urgency), tween moodiness, and silliness that you'll hear in her high-pitched, talking-like-a-baby voice while going over government facts.
And in this video I am asking Kayla all about her day. She mostly gives me one word answers, "yeah, yeah, yeah, yes, uh huh, no" and then finally gives me a little conversation to work with. The head band was part of her after-school-dress-up-fun.
Go check out the other posts on A Day In The Life and link up!
I took some video clips of Kayla over a couple of days and then edited those down to a 4 and a half minute (you're welcome!) video montage of what is more like "A Peek Into The Life" of Kayla.
A typical week day for Kayla:
- Wake up at 6am and do the whole morning routine of breakfast, brushing teeth and hair, getting dressed and walking to the bus stop.
- If it's Mon I pick her up after school and we go directly to vision therapy (45 min)
- If it's Tue she rides the bus home and a short time later we go back to school to pick Lucas up from Mad Science
- If it's Wed I pick her up after school and we go directly to vision therapy (45). After VT we go directly to speech therapy (30 min)
- If it's Thur she comes home on the bus (and you'll see in the 2nd video she is interested in the running club at school; if I can still sign her up for that I think they meet on Thur after school)
- If it's Fri she stays after school for Drama Club
The days we are actually home after school she either plays outside or retreats upstairs to her room/the play area and plays dress up or any number of things. She likes her space. She likes to do her own thing after school and therapies. She likes to de-stress. The rest of the time is usually rushed to fit in studying, some homework, reading, shower, eating dinner, making lunch, on the off-therapy days doing eye and speech exercises at home, pick out clothes for the next day, read a story before bed.
In this video you'll get a true peek as to what a day in her life is like: complete with rushing to get ready in the morning (it's an every.single.morning mantra "c'mon Kayla, hurry up, we're going to be late, let's go, hurry! and getting up 15 min earlier wouldn't help. She's already up at 6 as it is. We would still be doing the hurry up routine. She has no sense of urgency), tween moodiness, and silliness that you'll hear in her high-pitched, talking-like-a-baby voice while going over government facts.
And in this video I am asking Kayla all about her day. She mostly gives me one word answers, "yeah, yeah, yeah, yes, uh huh, no" and then finally gives me a little conversation to work with. The head band was part of her after-school-dress-up-fun.
Go check out the other posts on A Day In The Life and link up!
Tuesday, March 18, 2014
Dear Future Mom Video
CoorDown, Italy's national Down syndrome organization, received an email from a woman who just found out her unborn son has Down syndrome.
She asked, "What kind of life will my child have?"
Saatchi and Saatchi Italy used that letter as the basis for a beautiful ad for World Down Syndrome Day by featuring a number of individuals answering her question.
He will learn to write, and send her a letter if he's far away, "because, indeed, he will be able to travel, too." That is just one of the answers.
What kind of life will your child have?
A beautiful one, a beautiful life indeed, because he is your son. And your life will carry on whether your child is born with 46 or 47 chromosomes.
She asked, "What kind of life will my child have?"
Saatchi and Saatchi Italy used that letter as the basis for a beautiful ad for World Down Syndrome Day by featuring a number of individuals answering her question.
He will learn to write, and send her a letter if he's far away, "because, indeed, he will be able to travel, too." That is just one of the answers.
What kind of life will your child have?
A beautiful one, a beautiful life indeed, because he is your son. And your life will carry on whether your child is born with 46 or 47 chromosomes.
Sunday, March 16, 2014
My Blog is 8! And In Other News ...
Happy 8th blogiversary to my little blog and it's little corner on the World Wide Web!
8 years of sharing our life. 8 years of sharing pictures and videos. 8 years and sharing the joy of welcoming our 2nd child. 8 years of sharing that Down syndrome isn't the unknown anymore. 8 years of sharing how typical our life is. 8 years of sharing that parenting a child with 47 chromosomes isn't so much different than parenting a child with 46 chromosomes. Last year I felt like I was at a crossroads with my blog, and in some ways I still feel that way, but carrying on for now. Thank you for sharing in our journey with us.
As I have done for the past 2 years I will be donating $1 for every comment left on this blog post to Down Syndrome Research and Treatment Foundation's Plus 15 campaign where I think donations will be matched 3:1 on March 21st for World Down Syndrome Day. Since my blogiversary is only 5 days before WDSD there isn't much time ... so comment, comment, comment please! I have tried to share all I know about Down syndrome, but if anyone has any questions, please feel free to ask and I will do my best to answer!
As I have also done in the past I will also be donating 21% of sales from my Discovery Toys site to Plus 15, so please look around and see if there are any gifts you might want to get for upcoming birthdays or summer fun!
A couple of other things for WDSD:
Research Down Syndrome has a World Down Syndrome Day Virtual Run/Walk event going on - anywhere! This can be whatever you want it to be. Running for 3 minutes and 21 seconds. Walking 3.21 miles. Walking around your block 3.21 times. Running for 32.1 minutes. Whatever combination of 3 2 1 you can come up with!
We, the bloggers of Down Syndrome Blogs, have come up with this theme for a blog hop for WDSD:
3/21: A Day In The Life
Calling all bloggers! Any and all posts on this theme are welcome - it does not need to be about your plans for 3/21 itself. Describe a day in the life of your loved one with Down syndrome using words, pictures, or both. If your loved one with Down syndrome is interested in participating, we would love to read about their days in their own words or pictures!
Please don't forget to leave a comment so I can add it to my donation amount!
8 years of sharing our life. 8 years of sharing pictures and videos. 8 years and sharing the joy of welcoming our 2nd child. 8 years of sharing that Down syndrome isn't the unknown anymore. 8 years of sharing how typical our life is. 8 years of sharing that parenting a child with 47 chromosomes isn't so much different than parenting a child with 46 chromosomes. Last year I felt like I was at a crossroads with my blog, and in some ways I still feel that way, but carrying on for now. Thank you for sharing in our journey with us.
As I have done for the past 2 years I will be donating $1 for every comment left on this blog post to Down Syndrome Research and Treatment Foundation's Plus 15 campaign where I think donations will be matched 3:1 on March 21st for World Down Syndrome Day. Since my blogiversary is only 5 days before WDSD there isn't much time ... so comment, comment, comment please! I have tried to share all I know about Down syndrome, but if anyone has any questions, please feel free to ask and I will do my best to answer!
As I have also done in the past I will also be donating 21% of sales from my Discovery Toys site to Plus 15, so please look around and see if there are any gifts you might want to get for upcoming birthdays or summer fun!
A couple of other things for WDSD:
Research Down Syndrome has a World Down Syndrome Day Virtual Run/Walk event going on - anywhere! This can be whatever you want it to be. Running for 3 minutes and 21 seconds. Walking 3.21 miles. Walking around your block 3.21 times. Running for 32.1 minutes. Whatever combination of 3 2 1 you can come up with!
We, the bloggers of Down Syndrome Blogs, have come up with this theme for a blog hop for WDSD:
3/21: A Day In The Life
Calling all bloggers! Any and all posts on this theme are welcome - it does not need to be about your plans for 3/21 itself. Describe a day in the life of your loved one with Down syndrome using words, pictures, or both. If your loved one with Down syndrome is interested in participating, we would love to read about their days in their own words or pictures!
Please don't forget to leave a comment so I can add it to my donation amount!
Friday, May 17, 2013
Thick Skin
On March 21, for World Down Syndrome Day, I went to Kayla's school to read the book High Fives and a Big Heart to her class. I also wanted to talk a little bit with her classmates about Down syndrome and what it does and doesn't mean for Kayla. I showed them this picture of her chromosomes and explained about the 3 chromosomes on #21.
I didn't have a lot of time to talk with them, but overall I think it went well.
At the beginning I asked if anyone heard of Down syndrome and what they knew about it. A few hands went up and the first girl I called on answered that her mom told her it was when someone acted younger than their age.
Another girl - J - one of Kayla's friends from the bus and who lives down the street from us, said "It's just a thing."
I like that. Down syndrome is no big deal ... it's just a thing!
I mentioned things that Kayla can still do, things that she likes, and places she's been to show how she is similar to her peers. I asked questions like, "Has anyone been on an airplane? Who likes roller coasters? Who likes to go to the beach?" and each time I saw her classmates all glancing over to see if Kayla was raising her hand to the questions too. I hope it made them see her as more like them than different.
Then I started reading the book. It's written and illustrated by a 4th grade class about Jeffrey, their classmate who has Down syndrome. One part of the book mentions that if anyone is mean to Jeffrey they will stick up for him.
There is a boy in Kayla's class who was sitting in the first row and I heard him mumble, "I wish I had someone to do that for me." An aide in the room quietly said his name and he again mumbled, "What? I'm always getting picked on at recess."
After I finished the book the class had to line up to go to art. As they were doing this, J, the girl I mentioned earlier, walked by me and told me, "Some other kids think Kayla is weird, but I don't think that."
Ouch. She wasn't saying it to be mean. I like J. She has always been friendly with Kayla, they play together outside and she's been inside our house a few times to play. I've wanted to ask her more about that; to ask what kids say about Kayla, to ask what Kayla does that makes other kids think she's weird, but I haven't had the chance.
I also willed myself not to cry as I left the school that day. Of course it hurts to hear that other kids think your kid is weird. Of course I know not everyone will like Kayla (or Lucas for that matter). We're not friends with everyone in our class and it's not realistic to expect that. I know kids can be mean whether you have special needs or not (and I was reminded of this fact when I thought about the boy who mumbled out while I was reading the book about wishing he had someone to stick up for him.)
But as a parent your heart still hurts for your child.
I wrote about this experience and how parenting requires thick skin on the website What to Expect. You can read more in my article How My Daughter Helped Me Grow Thick Skin.
I didn't have a lot of time to talk with them, but overall I think it went well.
At the beginning I asked if anyone heard of Down syndrome and what they knew about it. A few hands went up and the first girl I called on answered that her mom told her it was when someone acted younger than their age.
Another girl - J - one of Kayla's friends from the bus and who lives down the street from us, said "It's just a thing."
I like that. Down syndrome is no big deal ... it's just a thing!
I mentioned things that Kayla can still do, things that she likes, and places she's been to show how she is similar to her peers. I asked questions like, "Has anyone been on an airplane? Who likes roller coasters? Who likes to go to the beach?" and each time I saw her classmates all glancing over to see if Kayla was raising her hand to the questions too. I hope it made them see her as more like them than different.
Then I started reading the book. It's written and illustrated by a 4th grade class about Jeffrey, their classmate who has Down syndrome. One part of the book mentions that if anyone is mean to Jeffrey they will stick up for him.
There is a boy in Kayla's class who was sitting in the first row and I heard him mumble, "I wish I had someone to do that for me." An aide in the room quietly said his name and he again mumbled, "What? I'm always getting picked on at recess."
After I finished the book the class had to line up to go to art. As they were doing this, J, the girl I mentioned earlier, walked by me and told me, "Some other kids think Kayla is weird, but I don't think that."
Ouch. She wasn't saying it to be mean. I like J. She has always been friendly with Kayla, they play together outside and she's been inside our house a few times to play. I've wanted to ask her more about that; to ask what kids say about Kayla, to ask what Kayla does that makes other kids think she's weird, but I haven't had the chance.
I also willed myself not to cry as I left the school that day. Of course it hurts to hear that other kids think your kid is weird. Of course I know not everyone will like Kayla (or Lucas for that matter). We're not friends with everyone in our class and it's not realistic to expect that. I know kids can be mean whether you have special needs or not (and I was reminded of this fact when I thought about the boy who mumbled out while I was reading the book about wishing he had someone to stick up for him.)
But as a parent your heart still hurts for your child.
I wrote about this experience and how parenting requires thick skin on the website What to Expect. You can read more in my article How My Daughter Helped Me Grow Thick Skin.
Thursday, March 21, 2013
A Fact, A Fallacy, A Photo
A Little Moxie is hosting a blog hop for World Down Syndrome Day: 3 for 21.
The instructions are easy:
Post a fact
Post a fallacy
Post a photo
These can be "related to Down syndrome, to the spirit of inclusion, advocacy/awareness."
Fact: People with Down syndrome are not always happy. They are individuals with a wide range of emotions. Example: Yesterday morning Kayla was not happy with me at all when I said she couldn't wear flip flops to school. This morning she was mad that she couldn't wear gloves (because I have no idea what she did with them) and was refusing to get up off the floor and walk to the bus stop. She has feelings beyond the range of being happy and content with everything in her life.
Fallacy: People with Down syndrome can't learn, or reach a plateau and stop learning. (Hint: Just like everyone else they'll only reach a plateau if not given an opportunity to learn.).
Here is Kayla reviewing what she learned about the Antebellum Period:
And a picture of Kayla:
The instructions are easy:
Post a fact
Post a fallacy
Post a photo
These can be "related to Down syndrome, to the spirit of inclusion, advocacy/awareness."
Fact: People with Down syndrome are not always happy. They are individuals with a wide range of emotions. Example: Yesterday morning Kayla was not happy with me at all when I said she couldn't wear flip flops to school. This morning she was mad that she couldn't wear gloves (because I have no idea what she did with them) and was refusing to get up off the floor and walk to the bus stop. She has feelings beyond the range of being happy and content with everything in her life.
Fallacy: People with Down syndrome can't learn, or reach a plateau and stop learning. (Hint: Just like everyone else they'll only reach a plateau if not given an opportunity to learn.).
Here is Kayla reviewing what she learned about the Antebellum Period:
And a picture of Kayla:
Who I Am
The International Down Syndrome Coalition for Life's campaign for WDSD is "Who I Am" - based on a song by Sarah Conant.
When I asked Kayla, "Who are you?" She said, "I'm Kayla!"
So there you have it. She's Kayla. Just Kayla.
But if you asked me who she is I'd say (besides the obvious of being my daughter and a great big sister) I'd say she's an almost 10 year old girl who is:
loved
valued
wanted
included
friendly
funny
creative
imaginative
strong-willed (because that sounds more positive than stubborn!)
confident
independent
defiant
moody
challenging
opinionated
adventurous
determined
world-traveler (we went to Denmark and Sweden last summer)
I'd tell you that she likes
popcorn
cereal
pizza
ham
cheese
yogurt
sleep-overs
roller coasters (she doesn't get that from me!)
water parks
beaches
playgrounds
being outside
roller skating
movies
hotels (she's always saying "I want to go to a hotel to sleep.")
friends
drawing
painting
going to the ballet
playing dress-up
That's Kayla. She is who she is and that's all she needs to be.
Here she is all dressed up when we went to the ballet to see Snow White.
Enjoy this video, set to the song of Who I Am...
When I asked Kayla, "Who are you?" She said, "I'm Kayla!"
So there you have it. She's Kayla. Just Kayla.
But if you asked me who she is I'd say (besides the obvious of being my daughter and a great big sister) I'd say she's an almost 10 year old girl who is:
loved
valued
wanted
included
friendly
funny
creative
imaginative
strong-willed (because that sounds more positive than stubborn!)
confident
independent
defiant
moody
challenging
opinionated
adventurous
determined
world-traveler (we went to Denmark and Sweden last summer)
I'd tell you that she likes
popcorn
cereal
pizza
ham
cheese
yogurt
sleep-overs
roller coasters (she doesn't get that from me!)
water parks
beaches
playgrounds
being outside
roller skating
movies
hotels (she's always saying "I want to go to a hotel to sleep.")
friends
drawing
painting
going to the ballet
playing dress-up
That's Kayla. She is who she is and that's all she needs to be.
Here she is all dressed up when we went to the ballet to see Snow White.
Enjoy this video, set to the song of Who I Am...
Wednesday, March 20, 2013
Awareness, Acceptance, Advocacy, Action
Tomorrow is World Down Syndrome Day; and just like in October - Down Syndrome Awareness Month - it is about raising awareness and acceptance for those with Down syndrome.
Where do we go after raising awareness? I have been raising awareness on my blog for 7 years now, and on FB for about 4 or 5 years. In raising awareness I feel like I'm preaching to the choir. The majority of the awareness seems to happen within the Down syndrome community.
October was first celebrated as Down Syndrome Awareness Month in 1981. That was 32 years ago. I gave birth to Kayla in 2003; so at that point there had been 22 Octobers recognized as DSAM. Yet I had never, ever, not once, heard of Oct as DSAM ... until I had Kayla.
I think with the explosion of social media people are more aware now ... we share on blogs, twitter, FB, and whatever other means ... and our friends who don't have children with Down syndrome see all this posting about DSAM and WDSD...so they are now more aware. Society is becoming somewhat more aware.
And as Down Syndrome Uprising put it in this post - "People are aware of Down syndrome ... they know it exists." I agree. People are more aware now, even though there is still a lot of misinformation and pre conceived notions about Down syndrome.
But is the acceptance there? Somewhat. No longer are parents told to place their newborns in an institution, and kids with Down syndrome are now allowed to attend public schools; something they weren't allowed to do years ago. We aren't at full acceptance yet (and unfortunately we may never be because people fear what they don't know and they fear differences) and can we say we are even headed in that direction when companies create prenatal screening tests called MaterniT21 explicitly targeting babies with Down syndrome by identifying them in the womb much earlier in pregnancies?
One way we can start with truly accepting individuals with Down syndrome is to stop reporting certain types of news stories. When those type of stories cease to be news-worthy it will feel more like acceptance. Because people with Down syndrome will just exist in society along with everyone else, and it won't be a big deal that someone with an extra chromosome was elected prom king/queen. I said this same thing almost 5 yrs ago, and yet these stories seem even more prevalent now.
I'm trying to become a better advocate for not only my child, but for people with Down syndrome in general. I've attended workshops and hope to attend Partners in Policymaking. Change needs to happen. People with disabilities can't have more than $2000 in assets in their name or they will lose benefits. That's why it's important for things like the ABLE Act to pass legislation. Can you imagine having to micromanage your money so much so as to make sure you don't have more than $2000? How can you ever save up for anything?
As for action ... I started transferring Kayla out of her school last year and informing the school district she will attend her neighborhood school. The same school all the other kids on our street attend; she doesn't need to be bused miles away to a different school. And Kayla is visible in the community; we take her everywhere with us. She is included. She belongs.
But more action needs to come from society in general. Action of recognizing individuals with Down syndrome as just that - individuals who have the same rights and deserve the same respect as every person. They are human beings and don't need to keep being identified by having Down syndrome. They have a rightful place in society just by existing. They don't need to prove their worth or value any more than you or I do.
Where do we go after raising awareness? I have been raising awareness on my blog for 7 years now, and on FB for about 4 or 5 years. In raising awareness I feel like I'm preaching to the choir. The majority of the awareness seems to happen within the Down syndrome community.
October was first celebrated as Down Syndrome Awareness Month in 1981. That was 32 years ago. I gave birth to Kayla in 2003; so at that point there had been 22 Octobers recognized as DSAM. Yet I had never, ever, not once, heard of Oct as DSAM ... until I had Kayla.
I think with the explosion of social media people are more aware now ... we share on blogs, twitter, FB, and whatever other means ... and our friends who don't have children with Down syndrome see all this posting about DSAM and WDSD...so they are now more aware. Society is becoming somewhat more aware.
And as Down Syndrome Uprising put it in this post - "People are aware of Down syndrome ... they know it exists." I agree. People are more aware now, even though there is still a lot of misinformation and pre conceived notions about Down syndrome.
But is the acceptance there? Somewhat. No longer are parents told to place their newborns in an institution, and kids with Down syndrome are now allowed to attend public schools; something they weren't allowed to do years ago. We aren't at full acceptance yet (and unfortunately we may never be because people fear what they don't know and they fear differences) and can we say we are even headed in that direction when companies create prenatal screening tests called MaterniT21 explicitly targeting babies with Down syndrome by identifying them in the womb much earlier in pregnancies?
One way we can start with truly accepting individuals with Down syndrome is to stop reporting certain types of news stories. When those type of stories cease to be news-worthy it will feel more like acceptance. Because people with Down syndrome will just exist in society along with everyone else, and it won't be a big deal that someone with an extra chromosome was elected prom king/queen. I said this same thing almost 5 yrs ago, and yet these stories seem even more prevalent now.
I'm trying to become a better advocate for not only my child, but for people with Down syndrome in general. I've attended workshops and hope to attend Partners in Policymaking. Change needs to happen. People with disabilities can't have more than $2000 in assets in their name or they will lose benefits. That's why it's important for things like the ABLE Act to pass legislation. Can you imagine having to micromanage your money so much so as to make sure you don't have more than $2000? How can you ever save up for anything?
As for action ... I started transferring Kayla out of her school last year and informing the school district she will attend her neighborhood school. The same school all the other kids on our street attend; she doesn't need to be bused miles away to a different school. And Kayla is visible in the community; we take her everywhere with us. She is included. She belongs.
But more action needs to come from society in general. Action of recognizing individuals with Down syndrome as just that - individuals who have the same rights and deserve the same respect as every person. They are human beings and don't need to keep being identified by having Down syndrome. They have a rightful place in society just by existing. They don't need to prove their worth or value any more than you or I do.
Saturday, March 16, 2013
Blogiversary Crossroads
It's been 7 years since I started blogging. A 7-year blogiversary today. When I started I had no idea how long I would blog for; not sure if I thought I would even make it to 7 years.
When I started, Kayla wasn't quite 3 years old ... and now I have these 2 sweet kiddos:
I feel fortunate to have made so many connections throughout the years; and met so many great families in person. I think I've made some friendships that will last through the years.
Over the years I've tried to remain true to what my blog was when I started it. A place to share our life with friends and family ... and raise awareness of what life is like raising a child with Down syndrome. I realize that our experience is different from everyone else's experience raising a child with Down syndrome; but hopefully giving a glimpse of our life showed the normalcy of having a child with Down syndrome. Blessings and challenges just like there are raising a typical child.
I've used my blog to advocate for Down syndrome awareness and I hope after 7 years I've done a somewhat decent job of that. I think that whoever is still reading my blog has heard it all by now, so what is there left to say? Most everyone who reads my blog is on FB, with the exception of my mom (hi mom!) so I keep posting for her. So she can see the pictures and read the stories about her grandchildren...because she won't see it on FB!
So lately I've been feeling like I'm at a crossroads. To keep blogging, or not to keep blogging. What direction to take this blog...or keep it like it is. Mulling things over. Wondering where, if anywhere, to go from here.
We're almost to World Down Syndrome Day (March 21st) and last year on my blogiversary I donated a dollar for every comment on that post to Plus15 where my donation was matched 3:1. Your comments helped me out at just over $50. So my donation turned in to $200. In addition to donating 21% of my Discovery Toys sales to Plus15, I'd also like to do the comment challenge again as well.
So for every comment on this post I will donate $1 to Plus15 for World Down Syndrome Day and have my donation matched 3:1.
Please consider leaving a comment, even if you're normally just a lurker :)
When I started, Kayla wasn't quite 3 years old ... and now I have these 2 sweet kiddos:
I feel fortunate to have made so many connections throughout the years; and met so many great families in person. I think I've made some friendships that will last through the years.
Over the years I've tried to remain true to what my blog was when I started it. A place to share our life with friends and family ... and raise awareness of what life is like raising a child with Down syndrome. I realize that our experience is different from everyone else's experience raising a child with Down syndrome; but hopefully giving a glimpse of our life showed the normalcy of having a child with Down syndrome. Blessings and challenges just like there are raising a typical child.
I've used my blog to advocate for Down syndrome awareness and I hope after 7 years I've done a somewhat decent job of that. I think that whoever is still reading my blog has heard it all by now, so what is there left to say? Most everyone who reads my blog is on FB, with the exception of my mom (hi mom!) so I keep posting for her. So she can see the pictures and read the stories about her grandchildren...because she won't see it on FB!
So lately I've been feeling like I'm at a crossroads. To keep blogging, or not to keep blogging. What direction to take this blog...or keep it like it is. Mulling things over. Wondering where, if anywhere, to go from here.
We're almost to World Down Syndrome Day (March 21st) and last year on my blogiversary I donated a dollar for every comment on that post to Plus15 where my donation was matched 3:1. Your comments helped me out at just over $50. So my donation turned in to $200. In addition to donating 21% of my Discovery Toys sales to Plus15, I'd also like to do the comment challenge again as well.
So for every comment on this post I will donate $1 to Plus15 for World Down Syndrome Day and have my donation matched 3:1.
Please consider leaving a comment, even if you're normally just a lurker :)
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