Just Like You - Down Syndrome

Wednesday, 9 October 2013

I shared this video last year, and am sharing again because the Down Syndrome Guild of Greater Kansas City did such a wonderful job with the Just Like You advocacy and awareness video.

It's nice to see the different sets of friends and hear them talking about their friendships.

I was thinking of sharing this video with Kayla's class - 4th graders. The video is 13 minutes long, do you think that age group will maintain interest in this video, or is it too long to show during my talk? I haven't yet talked with her teacher so I'm not sure how much time I'll even have in the classroom. I like to show a picture of Kayla's chromosomes and just talk about why she has Down syndrome and then a little bit about what that means for Kayla.

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Growing Up

Tuesday, 8 October 2013

Two pictures of Kayla from several years ago. She is 10 now. Double digits. Tween. Pre-puberty. Hormonal and emotional. Dependent and independent. Growing up.

It doesn't seem that long ago that she was our little girl. We didn't know what to expect ... and still don't. She is still showing us. She is still paving her way. She is still figuring out her place in this world; and so are we.

This first picture is a favorite of mine. A glimpse of the beautiful girl she is growing up to be.

This second picture is a favorite of Joe's. She'll always be his little girl...in the same way that all fathers think of their daughters.

 

There is a frequent mind-set that I've heard since Kayla was born ... the impression that kids with Down syndrome stay babies 'longer' and you get to 'enjoy the baby stage longer' and 'they don't grow up, so you'll always have a child.'

But it's not true. They do grow up. They get a year older every year. She was a baby, then a toddler, then a preschooler, and now she's 10.

Growing up ... faster than I want her to.


 

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Fighting My Arch Nemisis

A lot of you probably don't know this, but I'm a fashion school graduate. Yeppp, I've got me a shiny ol' bachelors degree in fine arts for fashion design and merchandising. See look? I even had to draw and stuff.

Ask me how many years I've used said degree.
Answer: Zero. Goose egg. Nada.
But I promise, I graduated... see?

Oh hey, didn't know I had a big brother and sister that look nothing like me (because we aren't blood related), did you?

Why? I love the idea of fashion more so than working in fashion.
What I really wanted out of my degree was to go into some type of PR for the fashion industry, but along the way I got caught up in photography and the PR dream got lost.

Either way, fashion is apart of me and is really something I do have a lot of passion for. Unfortunately with fashion comes my arch nemesis... Laundry. Which I've pretty much made clear I'm not a huge fan of, but when I saw Tide came out with Tide Pods I was instantly intrigued. I mean, anything to make doing laundry even a tiny bit more interesting has my vote, am I right? Yes, yes I am.

So maybe I'm a little bit easily amused but I was pretty intrigued with the whole idea of just throwing the little pac into my washing machine without having to dump a bunch of detergent into a cap and then have it go everywhere. Which, by the way, I always manage to drip all. over. the. place. Someone please tell me I'm not alone here? Also, I feel like I'm constantly using too much or not enough.. I mean, how does that cap really know how many articles of clothing I've got set to go for a ride in the machine?

In addition to the convenience and easy factor, Tide Pods were gentle on my clothes and didn't beat up on them! It cleaned, brightened and fought the inevitable (wine) stains I always have from being such a klutz. Also, these little pacs of clean are seriously budget diva approved and we all know how much I love to ball on a budget! For me, choosing to bathe my most fashionable clothing items in Tide Pods is a no brainer.


Why would you try out Tide Pods? Tell me for a chance to win a $100 gift card!

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She's Got The Look

Monday, 7 October 2013

Well, a new look anyway!

Kayla got glasses a few weeks ago. This is definitely a new look for her. After 10 years of nothing being on her face, it's taken some getting used to (for me!) to see Kayla with glasses on.

I was also worried about how difficult it was going to be to make sure she kept them on her face. I didn't see this going down very well. This is a child who won't even keep sunglasses on her face.

People would tell me that once she realized how much clearer she could see with her glasses, that she would probably leave them on.

And those people were right.

I have been amazed, and so impressed, with how easily she adjusted to wearing glasses, and leaving them on. I have to admit how nervous I was sending her off on the school bus that first day. I can't micro-manage her day, but I sure wanted to. Thoughts went through my head like, "What if she takes them off and leaves them on the bus?" "What if she plays with them and they break?" "What if she puts them in her backpack and doesn't use them?"

Last week, for some reason, we did forget them 3x before she went to school. I have no idea what was going on last week. I didn't even notice she didn't have them on when we went to the bus stop. Other than that, she's been doing great with keeping them on (and she has to wear them all the time).

And so much for the "scratch-resistant" lenses. I know they are 'resistant' and not 'scratch-proof' so they still could get a scratch on them. But I didn't think it would be less than 3 weeks into having the glasses that she somehow got a scratch on one of the lenses (is there any way to take the scratch out?)

So ... here is her new look:

 

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Resources for Down Syndrome Awareness Month

Sunday, 6 October 2013

20 years ago Band of Angels produced the first calendar featuring children with Down syndrome. They eventually stopped producing the wall calendar, but due to popular demand have brought back Beautiful Faces: 2014.  The price is currently $16.50 but goes up to $19.00 after Oct 15.

Woodbine House - a large source of books and DVDs on disabilities for parents, teachers, kids, and professionals - is again offering all Down syndrome-related materials for 20% off. I hate to admit it, because I want to stay in denial about my little girl growing up, but I think it's time I ordered The Girls' Guide to Growing Up and/or Teaching Children with Down Syndrome About Their Bodies, Boundaries, and Sexuality.

Anna's Angels funds research to improve the cognitive and communicative ability of individuals with Down syndrome.

Tribute 21 is the First Annual Masquerade Ball benefiting Research Down Syndrome.

If your Senators and Representative haven't signed on to the ABLE Act, contact them next week and encourage them to do so. This Act will allow for tax-free savings account for individuals with disabilities. This would supplement,but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.

The NDSS has a "Get To Know Me Poster" and lesson plan for elementary age students.

NDSS Signature Clothing Line from Rhyme and Reason - when you purchase any R&R product 10% goes back to NDSS, and when you purchase a signature shirt then $5 goes back to NDSS. New styles in Women, Men, and Kids are out now.

Other ideas from NDSS on Down Syndrome Awareness Month.


 

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