Siblings Running for Research DS

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Wednesday, April 16, 2014

Letting Her Go Towards Independence

I admit to, at times, being a bit of a helicopter mom. Some of that may have been because I was a first-time mom with Kayla, some of it may have to do with having a child with a disability. It's hard to find the balance between hovering for protection and safety, and backing off to allow for growing independence.  

Kayla will often say to me, "I got it Mom!" or "Let me do it!" and I need to listen to her more often. Listen to her pleas of independence and self-confidence. I need to back off and let her try and fail; I need to back off and let her find her way. I need to back off and let her figure it out. But at times, it's so hard to do.  

I shared this story on FB last month of getting to the bus stop one morning, and wanted to share on my blog too.

The bus was already at the stop this morning when we walked out of the house. I took Kayla's hand and we started running, her laughter echoing behind us. As we neared the bus she let go of my hand and cheerily called behind her, "I got it Mom!"
As I watched her run on ahead of me it was an unintentional glimpse in to the future where she continues to confidently tell me "I got it Mom!" and letting go will be part of that.


She doesn't need me for everything and I have to remind myself that is a good thing.

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Thursday, April 10, 2014

Need for National ADA Paratransit ID Card

Having a child with Down syndrome has made me more aware of the general disability community and issues that affect people with disabilities.

One such issue is being ADA eligible for paratransit (door-to-door or curb-to-curb service).

While this isn't something that directly affects my family, it is an important issue for those individuals who rely on paratransit.

My (admittedly limited) understanding of the program is you have to apply for, and meet criteria, to be ADA eligible for paratransit services in your community. You may, or may not, receive a card that allows you to utilize this service in your community.

Because you have to meet ADA requirements to be eligible for this service I think that the requirements and application are, for the most part, the same across the counties and state. However, the problem is your approval for your home county does not generally extend to approval for use in another county even in the same state.

For individuals who require the use of paratransit services, if they travel within their state, or out of state, they typically have to go through an application process to get a visitor's pass/card to use in the new location. Usually this requires advance planning and preparation. Individuals are needing to go to that location's paratransit website and fill out an application and submit it for review and eligibility to get a pass.

If they are eligible in one location they should be eligible in all locations. Having to apply each time a person is traveling outside of their county is often time-consuming and causing the person to fill out unnecessary and redundant information each time. So much for those spur-of-the-moment getaway weekends!

The Association of University Centers on Disabilities Council on Community Advocacy is seeking stories from people who use paratransit, and gathering input on the idea of a national, universal ADA paratransit ID card.

As one person put it ... if you have a driver's license think how inconvenient it would be to apply for a license each time you traveled out of state.

If this issue concerns you, please leave a comment on this site to share your experiences; and even if this doesn't directly impact you, please consider sharing the link to help spread the word.

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Monday, April 07, 2014

Have You Registered?

If you have a family member who has Down syndrome have you heard of DS-Connect? If you've heard of it, have you registered yet?

DS-Connect is a national Down syndrome database where families can share as much, or as little, information as they want.

What is the purpose of the registry?  "...will facilitate contacts and information sharing among families, patients, researchers and parent groups." It also " “...links those seeking volunteers for their research studies with those who most stand to benefit from the research.”

How can it be used? For professionals - Researchers, clinicians and other professionals can access de-identified aggregate data to identify target populations for study or trial planning or recruitment.

For families - explore the information you and others have provided to learn more about Down syndrome and its impact on other community members.

DS Achieves explains it is: "a resource for connecting researchers with families and self-advocates willing to participate in research and clinical trials. Called “DS-Connect,” the NIH Down syndrome registry will also help researchers improve our overall understanding of DS as a condition with the health histories, symptoms, and diagnosis information that families voluntarily provide.

For decades, DS researchers have lacked commonplace tools and capabilities necessary to advance their work to the next level, including a national DS registry. Without them, we can’t move from basic research to clinical trials to drug therapies or best practices that can meaningfully improve the quality of life for people with DS."

You can find out more about this registry by reading the FAQ.

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Tuesday, April 01, 2014

Lucas Offers Kayla Choice of Living Arrangements

Several months ago, or maybe even a year ago - who knows, time all runs together - Lucas asked Kayla if she wanted them to be neighbors when they grew up.


He brought this up again recently, "Kayla remember a long time ago I said when we grow up we're going to live next door to each other? Or we can live in the same house."
Me, "Ahh Lucas that is so sweet."
Lucas, "I said that a long time ago. But it's Kayla choice, whichever one she wants to do. So Kayla, which one do you want? To be neighbors or live in the same house?"

Kayla, "Live in same house."

We were talking about this again when I asked Lucas why he said it was Kayla's choice. He said just because she could chose and he would do whichever one she wanted to do.

We've never talked about Kayla's future living arrangements with, or in front of, Lucas. I don't think it has anything to do with knowing his sister has Down syndrome, I think he just thinks that they are always going to live together, or near each other.

But then this sweet conversation took another turn on the humorous side when Joe and I tried not to laugh (too!) much at Lucas' logic!


Lucas, "Ok so we're going to live together that means we're going to get married."
Kayla, "I don't want to be married!"

Me, "Kayla are you saying you don't want to get married because you want to live with Lucas?"
K, "Yeah. I don't want to be married."
L, "But don't you have to be married to live together?"
M, "Oh, that. Well yes, yes you do. But just not to your sister."
L, "So when we're adults we'll still be brother and sister?"


I have no idea why he thought they weren't going to be brother and sister when they were adults! 

The things kids come up with! 

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Friday, March 28, 2014

Research Down Syndrome Runners in the Making

Last Friday, for World Down Syndrome Day, we participated in a virtual run/walk event sponsored by Research Down Syndrome Runners. The virtual run/walk happened anywhere and you could make your own variation of 3-2-1. The mom who organized our event set it up as a 3.21 mile run/walk.

Lucas heard me talking about the event we were doing and that you could run for 3 min and 21 sec, you could walk around your block 3.21 times, you could run 3.21 miles etc. He said he wanted to run for 3 min and 21 sec.

So Joe and Lucas started out running with the other runners. Joe set his stop watch. When 3 minutes and 21 seconds were up he told Lucas they could stop running and finish it out by walking. He said Lucas just looked up at him with a big smile on his face ... and kept running. And kept running. Joe was wearing jeans, so he stopped running. Lucas hung in there with the race organizer and ran the whole 3.21 miles in about 30 minutes.

We had no idea that he was going to do that, much less that he could do it. He basically ran a 5K out of the blue. So proud of my little guy!

Later he asked "Is that run only on Down Syndrome Day?"

I told him that particular one was, but there are a lot of runs that happen all the time. He said he wanted to do another run.

I told him he was going to be like his dad running races for Research Down Syndrome. I pointed out the logo on all of our shirts and how people run for RDS to raise money; then the money goes to scientists and researchers who are studying Down syndrome and how to help people with Down syndrome. I asked him if he wanted to run like that - to run for RDS and raise money for them.

He was excited and said "Yes!" I turned to Kayla and said, "Kayla isn't that nice of Lucas? He wants to run for Down syndrome and raise money that will help people with Down syndrome."

Lucas chimed in, "Kayla I'm going to help you. I'm going to run for you!"

I love his heart. And I know there is an organization called I Run 4, where you can sign up and be matched to run for someone - but you can't request who you want to run for and you can't chose your own family member.

Maybe when he's older Lucas can get involved in something like that and run for someone else, but I love that right now ... he wants to run for his sister.

Joe is planning on running the Air Force marathon for the 3rd time and he also won the lottery for a bib number for the Marine Corps Marathon ... maybe one day Lucas will be running marathons with Joe. 

In the meantime I'm signing him up for his first event: The Cooper River Bridge Kids Run.

But it won't be just Lucas; I'm signing Kayla up too. She signed up for the Running Club at school because 2 of her friends go and she wanted to go too. She just went to her first meeting and seemed to enjoy it. They practice running a mile and improving on their time each week. Kayla is active, but she's not quite a runner (she's just like me). She runs, but in spurts. And her running gait isn't very fluid. But this kids run is a mile, not a 5K. I think she can handle running/walking a mile; and I will be there to help encourage her.

Lucas was excited at the prospect of raising money, but he also wanted to know, "But do I have to send them ALL my money?" When I said yes, he sighed, "Ah man." Then I told him it's not actually his money, but money people donate to RDS in his name - for running a race. They support him with a donation and he supports RDS by running. So for their first event they'll both be running for RDS, but Kayla will also be running for herself. Self-advocacy has to start somewhere!


I've set them up with a Crowdrise page if anyone would like to donate a little something to their efforts. Thank you!

Fundraising Websites - Crowdrise
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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!


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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!


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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.


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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!

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Thursday, March 13, 2014

A TwirlyGirl Dress for my TwirlyGirl

Disclosure: I got this product as part of an advertorial.

A TwirlyGirl dress for my TwirlyGirl girl ... could there be a better match between dress and girl?  Remember last year when Kayla was in the gala fashion show? Out of her choices of dresses she chose the dress that she could twirl in. She loves a good twirl on a dress. And most girls would love kids dresses for parties like these.

When I found out about the TwirlyGirl dresses and an opportunity to review a kids party dress I knew this was a dress review made for my girl. 

They have wonderful, vibrant, and colorful kid party dresses and I couldn't wait to see which design Kayla was going to receive. When the package arrived I didn't tell Kayla what it was. It was wrapped in a cute design like it was a big piece of candy. I wish I would have taken a video of Kayla opening it, but I didn't think of it at the time. Take my word for it - when she saw her new dress her face lit up. Her eyes got big and she let out a "My new dress!" exclamation. Lucas was sitting next to her so she hugged him and said, "Thank you for my new dress Lucas!" After we finished laughing about that I told her that she got the dress from my blog to do a review. Then she hugged me and said, "Thank you for your blog mom!" Ha! You're welcome kid!

I love the colors on Kayla's dress (it doesn't hurt that my favorite color is purple.) This is a nice, deep purple and pink splashed throughout the dress. Kayla happens to have a pair of purple leggings with pink sequins on it that matched the shade of purple trim on the bottom of the dress perfectly. 


So, about the dress. It exceeded my expectations. It is of a heavier quality fabric than I thought it would be made of, but it still manages to be lightweight and flowy. It has a lot of movement to it and doesn't restrict. Kayla's dress is a size 10 and they are made with extra room to grow so girls can grow into it and wear their kid party dresses for quite awhile. This dress will last Kayla for a good, long time. Which is great because she loves it. It has quickly become her favorite dress.


TwirlyGirl has a great selection of unique (and some are reversible! Two dresses in one!) kids dresses for parties. How many kid party dresses look as fun as this?

And not just for parties; these dresses are great for any occasion and everyday use. I don't have to tell Kayla that she can't run around and play outside in this dress because she can - it's made for it. It's sturdy enough to withstand outside play.
 
 So what is so special about a kids party dress from TwirlyGirl? All of their styles are in limited runs so it makes the dress seem even more special for that one-of-a-kind feel. They are machine-washable and pretty much wrinkle-free.

She can't put this dress on and not twirl in it. That's the fun of it!
So what did Kayla think of the dress? Since it's really her review as she is the one who will be wearing it! Well, see for yourself:

To see more dresses in the collection shop here. To get 15% off your order use code JoyTG15 (case sensitive) until 4/14/2014. (Does not apply to sale items, gift certificates or Design your Own Dress).

I received one or more of the products mentioned above for free using Tomoson.com. Regardless, I only recommend products or services I use personally and believe will be good for my readers.

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