Big Blueberry Eyes

Teamwork?

2012-01-30T21:38:00.000-05:00

At only 3 (ok very close to being 4) years old Lucas seems to be quite the schemer already.

When he's watching TV he pretty much owns the loveseat. The whole thing. It's all his because he lies down on it with a throw pillow and blanket. He has claimed is spot ... all snuggled in and comfy. Most of the time he likes watching TV with his little whale.

The other day he had assumed the position on the loveseat and realized he didn't have his whale. He asked Kayla if she would go upstairs and get his whale for him. She said no. He asked again. She said no again. He pleaded in that sing-song way kids have of saying "pleeeeassseeee." She relented. As she often does because she's just an awesome big sister that way.

As she ran up the stairs Lucas said to me, "See mom? I was team-working!"

I told him that wasn't teamwork, it was him being lazy and not wanting to go upstairs so he asked Kayla to do it for him. He said, "Yeah, that's teamwork!"

Then today they were "organizing" (ie cleaning up) the playroom. I heard him say to Kayla, "Can you clean up cause my neck hurts?"

She said, "Ok." He responded, "Ok I need to get a drink of water."

Little stinker. He did come downstairs to get a drink of water and then went right back upstairs to help her finish up.

More On Inclusion

2012-01-26T10:58:00.000-05:00

A follow up to my post Inclusion vs Segregation.

The following video A Vision For Abby is from the Possibilities video series. The videos "focus on the lives and accomplishments of individuals with developmental and intellectual disabilities. ...Each video shows the myriad possibilities and options that all people have as they grow up, become independent, and pursue their life's dreams and goals." There are 4 videos, including one with a young girl with Down syndrome just starting out in school.

Meet Abby, a 21-yr old adult with Down syndrome and is an assistant in a preschool classroom. She was never placed in a special-education curriculum, and graduated in 2009.

Then there is this article, Inclusion: The Right Thing For All Students. It is written by Cheryl M. Jorgensen, Ph.D., a member of the affiliate faculty with the National Center on Inclusive Education at the Institute on Disability at the University of New Hampshire.

(Words in bold are my own highlights) "The largest study of educational outcomes of 11,000 students with disabilities, the National Longitudinal Transition Study, showed that when students with disabilities spent more time in a general education classroom they were more likely to score higher on standardized tests of reading and math; have fewer absences from school; experience fewer referrals for disruptive behavior; and achieve more positive post-school outcomes such as a paying job, not living in segregated housing, and with having a broad and supportive social network. These results were true regardless of students’ disability, severity of disability, gender or socioeconomic status.

Furthermore, as the recent WNYC story states, the achievement of students without disabilities is not compromised by the presence of students with disabilities in their classrooms. Some studies even show that implementing inclusion on a school wide basis improves achievement for all students.

And just as important as academic outcomes are the attitudes and values that all students learn when they are educated together."

Special Exposure Wednesday

2012-01-25T13:56:00.000-05:00

Inclusion vs Segregation

2012-01-24T12:11:00.002-05:00

Last week NBC Nightly news aired a story on Ryan, a 6 yr old with Down syndrome who was recently in an ad for Target. (story and video clip at that link).

According to a Target rep they have been including people with disabilities in their ads since the early 1990s. I shared a picture (on Twitter) of an ad they had last summer that included an adorable little girl with Down syndrome. Ryan has been modeling since he was 3. He has also been in Nordstrom catalogs (and Nordstrom has been using child models with Down syndrome since 1997).

In the above article it is mentioned that Ryan goes to school (and as the video clip puts it, "a school for Down syndrome children...") at The Arc of Essex County Stepping Stones School.

In this extended edition of the news piece (this part I don't believe was aired on TV) his parents discuss a little bit about sending him to this particular school.

The description on their website is that the school "provides education supports to children ages three to ten who have Down syndrome or other cognitive impairments." It says children with other cognitive impairments, but from the glimpses on the video it looks like all the kids in his classroom have Down syndrome.

Reading about this school I have to admit that for a few minutes I thought ... 'Huh. Interesting. What if a school like this was available for us to send Kayla to. Would we?"

Initially I thought there sure are some positive aspects to sending my child to a school like this.

- I imagine IEP meetings would be a piece of cake. I mean, there would be no discussion about how much time out of the school day your child would be 'included' in the general education classroom vs the special ed classroom.

- My child would have access to "Expertly trained staff utilizing the most up to date and effective techniques and strategies for children with Down syndrome." So the teachers and therapists and assistants would have training, and probably attend workshops/conferences, (maybe through Down Syndrome Education International) and read books (like Classroom Language Skills for Children With Down Syndrome, Teaching Math to People With Down Syndrome, and Teaching Reading to Children With Down Syndrome) geared especially for teaching children with Down syndrome. My child wouldn't be the first child with Down syndrome to be in their classroom.

- My child would be surrounded with other children just like her. She would walk through the halls and not be the only one, or handful, of students with Down syndrome.

- Everything would be tailored and designed to educating a child with Down syndrome.

Ryan's parents made this school decision with what they believe is the best choice for Ryan. And it looks like he's happy there and thriving and that's wonderful.

But yet, even though in some ways it seems ideal, that's not where I would ultimately want to send my child. I'm not judging Ryan's parents for making a different choice either - it's their choice and it's working for them. And this is only my opinion of why I wouldn't send Kayla to a school that was just for kids with Down syndrome.

- Where is the diversity? Where are the peer models?

- Aside from speech therapy, (and the adults in the school) where would she hear and receive and pick up on appropriate speech patterns and language from her peers?

- She wouldn't have the experience of a typical classmate teaching her things like swinging. (Ok I'm well aware that being in a school with all students who have Ds that she could very well have picked this up from another student w/Ds .. this was just one example of her experience at a typical school.)

- The Stepping Stones school only goes up to age 10. So then what happens after that? All of a sudden you're in a regular public school; would it be an easy transition?

- I want Kayla and Lucas to go to the same school (and I'm still frustrated that she's not at her neighborhood school as it is.)

- Meanwhile typical students and teachers at the public schools are missing out on an opportunity to know and educate a child with Down syndrome. How will perceptions change?

- Research shows that inclusive classrooms have just as much benefit for the typical students as it does for those with disabilities.

- This is actually the complete opposite of what I want for Kayla. I want inclusion, not segregation. While I'm sure it would be nice for her to be surrounded by all peers with Down syndrome that simply is not the way society works. My vision is for Kayla to be fully included through her schools years, and admittedly we're not there yet. It's just ideally that is what I would like for Kayla. But I realize not every school is fully on board with full inclusion. For full inclusion to work the attitude has to be there from administration to teachers to have it implemented in a way to benefit all students.

From Down Syndrome Education: Training for inclusion needs to be a priority in the training of all teachers. Training teachers in inclusion leads to better teachers, who are more skilled at meeting the diversity of learning needs that will be found in any group of typically developing children, as well as being able to include children with disabilities in their classes, schools and communities.

Last weekend I attended a workshop on preparing for inclusion in life. This covered elementary school through college and beyond. The presenter said a number of things that made an impact on me. One of which was about changing the world.

She said, "The world isn't ready for inclusion because society doesn't have experience with people with disabilities. We have the power to change that. The more familiar people get with people with disabilities in society the more accepting society will be. It is not enough to enable students with disabilities to reach their full potential. We must re-educate future employers, neighbors, friends, and parents."

Students who grow up having other students with disabilities in their classrooms are more likely to hire those with disabilities.

We have to start changing the mindset of future teachers, employers, doctors ... society in general ... that there is a place for those with Down syndrome/disabilities and that place is belonging right in with the rest of society. They don't need to 'earn' their place in society. People with disabilities should be included in all aspects because disability is natural.

I think this sums up inclusive education nicely: If we wish to make a difference to the life experience of children and adults with disabilities, all children need to grow and learn together, so that the neighbours, friends and workmates of adults with disabilities have the opportunity to value the person first, to realise that everyone has strengths and weaknesses and that everyone has a contribution to make to a caring society. Anyone can become disabled through illness or accident and everyone will become less able with age. Developing caring, inclusive, communities improves the quality of life of all members of the community. From DSE's Education for Children With Down Syndrome: An Overview

What are your thoughts?

Gluten-Free Saver Deal

2012-01-23T12:02:00.000-05:00

Today's deal from Gluten Free Saver: $9 for $17 from Katz Gluten Free.

The voucher is good until Apr 29th and can be used immediately at Katz Gluten Free. They have bread, pies, cookies, cakes etc. I think I need to stock up on pizza crust for Kayla; it seems there is always pizza at some event or another that she needs to bring her own GF pizza!

I don't recall that we've tried any of the Katz products yet, so I was excited to see they offer a sample pack of items that you can get for free by using code SAMPLE and just pay shipping!

Pamela's Products

2012-01-21T14:56:00.000-05:00

One of the better brands I've found on this gluten-free journey is Pamela's Products. The first thing we tried was the Baking and Pancake Mix. This made for some yummy gluten-free pancakes (and there are plenty of other recipes on the site for this mix as well.)

Another of their yummy doesn't-taste-like-gluten-free products is the Chocolate Brownie Mix. What's even better is this can be ordered in a single-serving pack. It's microwaveable and done in about a minute. This is great for a quick and easy brownie mix for on the go. All you need is a little bit of oil and water and a microwaveable bowl or cup. I love these! I took a single-serving pouch when we went to Chicago. During the awards banquet dinner I handed our server this little bag of brownie mix and asked if he could ask the chef, or whoever in the kitchen, to make this up for Kayla (it only takes about 60 seconds) so she could have her dessert with the rest of us (which wasn't gluten-free.) It worked out wonderfully!

I ordered a box from Amazon which is a few dollars cheaper when signing up for the Subscribe & Save (which can always be cancelled at any time).

These little pouches come in handy when Kayla is invited to a birthday party. I can just make up a mix before we leave the house to take with us ... so much easier than having to make up a whole cake, or tin of muffins, for one birthday party. Then what am I supposed to do with the rest of the cake/muffins? I usually freeze them, but that only lasts so long; they just don't taste as good once they've been frozen.

The pouches say they are single-serve, but they actually make up a pretty good size brownie. I cut it in half for Kayla and get two servings out of it.

I just found out the Baking & Pancake Mix also comes in the single serve pouch as well. Looks like I need to stock up on those too! Definitely makes traveling easier!

Chicago Photo Shoot

2012-01-19T14:10:00.000-05:00

A couple months ago I posted a photo of Kayla from the photo shoot that was done in Chicago. I also used one of the family pictures for our Christmas cards. I just realized I never shared some of the other pictures from this photo shoot.

I have such a hard time taking a decent picture of Kayla lately; seriously! I have to snap what seems like 50 pictures just to get one or two that look nice. She has some aversion to looking at me/the camera and will keep her eyes down or to the side. Anywhere but where I want them to be! So I wasn't sure how this photo shoot was going to turn out.

The other thing I was worried about was Kayla's right eye. A few days before the trip Kayla had a cold, by the time we arrived in Chicago I think she had a sinus infection. It was bad. Her eye was constantly watering, she was rubbing it and there was a streak of redness from her eye down to her cheek. By Thur night her eye was a bit swollen. Lovely, just what we needed for a photo shoot for "Most Beautiful Eyes!" By late Friday afternoon it was starting to get a little better, but in some of these photos I can still tell her right eye was a little puffy; I'm just glad the photo shoot wasn't Thur night!

To say I was pleased is an understatement! The ladies were just awesome with the kids and I love how these photos came out! One lady (referring to herself as the child wrangler) did such a great job of keeping Kayla sitting still, focused, relaxed, and happy - which made for some natural smiling/laughing photos.

If we lived closer to NYC I would consider using these photos to put together a portfolio (hello, ToysRUs!)

We went to a children's museum earlier that day and forgot about the stamp on the front of her hand!

I think Lucas was looking quite dashing himself - little Mr GQ!

Prevent Blindness America used one of the photos for their donation page.

Special Exposure Wednesday

2012-01-18T12:58:00.000-05:00

I posted this picture on my daily photo blog, but I'm sure I'll be repeating photos over here as well, especially for Special Exposure Wednesday!

Coming Full Circle

2012-01-17T11:24:00.000-05:00

If you've been reading my blog for a while you've probably read my "Guilt" post - on how I felt right after Kayla was born and realized she had Down syndrome.

It was her eyes. As soon as I looked at her face I couldn't help but zero in on her eyes. It was because of her eyes that I knew in my heart she had Down syndrome. I couldn't focus on anything else, I couldn't even be elated that I just gave birth to my first child and she was in my arms, fresh from my womb.

I asked the midwife, "She does have Down syndrome, doesn't she?" But she wouldn't specifically answer. She did a brief look at the palm of one of Kayla's hands and shook her head. She drew an imaginary line from her eyes to her ears and said they weren't low set. All I kept saying was, "But her eyes. What about her eyes? Doesn't she look like she has Down syndrome because of her eyes?"

In that moment those eyes spoke volumes to me. Things I didn't want to hear. I was now the mother of a child with Down syndrome. My daughter had Down syndrome and this was my reality now. This was our life. This wasn't the life I imagined. This wasn't the birth I imagined. This wasn't the daughter I imagined... and it was all because of her eyes.

It was almost 2 weeks before we got the blood test results back confirming what I already knew. During that time I found myself staring at her eyes. I wondered if other people could tell just by looking at her. Sometimes I would look at her a certain way, or she would look a certain way and I would think, "hmm...maybe she doesn't have Down syndrome after all." But no, it was just a little false hope and wishful thinking. Most of the time I would look at her eyes and all I saw was "Down syndrome" like a neon light flashing off and on. It was as if her eyes were saying, "Yes I have Down syndrome, now LOOK at ME."

Of course I had no idea what was in store with those eyes.

I had no idea that yes, her eyes would become the focal point of her features. I had no idea people would comment on her eyes when they would meet Kayla. And they did, and still do. I started hearing, over and over, from strangers how beautiful her eyes are.

At first I was skeptical, thinking people were just saying that to be nice and kind ... as a consolation to the fact that they knew she had Down syndrome.

But then I finally got past the point where I didn't look at her face - at her eyes - and see the neon flashing "Down syndrome" sign anymore. I saw her eyes for what they were ... simply eyes. Eyes with a beautiful slight almond-shape tilt to them. Eyes with a pretty shade of blue. Eyes with Brushfield spots that sparkle.

So when I found out about the Most Beautiful Eyes contest, I wanted to enter Kayla's picture. It was a legitimate contest with independent judges. And of course the incentive of winning a college scholarship was one of the main reasons.

After Kayla was the state winner for SC (thanks to online voting from family and friends sharing the link) she was then selected as one of the 5 winners who were sent to the judges. Up until that point I'm not sure if anyone knew she had Down syndrome or not. Not that it mattered, that had nothing to do with the contest. When I look at the picture I submitted I don't think it's really obvious, but then again, I don't 'see' it in her all the time now either.

When we had our first newspaper interview I debated whether to mention that fact or not. In the end I decided to mention it because even though the fact that she has Down syndrome had nothing to do with the contest it is the fact that she has Down syndrome that her eyes have the beauty they have. It's because she has Down syndrome that she has the almond-shape and the Brushfield spots. I couldn't leave out that fact. I wanted people to know, yes this kid is a finalist (and as you all know - the ultimate winner!) in a most beautiful eyes contest, and guess what? She just happens to have Down syndrome.

Yet 8.5 yrs ago in the delivery room I didn't see the beauty my daughter already had in her. I never imagined that one day those eyes ... those eyes that I felt such grief over ... would sparkle and shine. I didn't know those eyes would come to speak volumes to me again; joy, wonder, amazement, innocence, curiosity, defiance, strong-willed, joy, happy, love. I had know idea those beautiful eyes would one day win her a college scholarship.

There is beauty in Down syndrome. Truly there is. Not just superficial beauty such as Kayla's beautiful eyes (although I have seen a great many children with Down syndrome who have those same beautiful eyes!) but beauty in her spirit as well. Beauty in the joy she finds with the little things, beauty in her curious nature and innocent ways.

And I think it is about time that society starts to see the beauty in Down syndrome, too ... because it is there.

Chore Chart

2012-01-16T14:41:00.000-05:00

I haven't yet used a chore or behavior type chart with Kayla, or Lucas, but there's no time like the present to start!

I think the biggest issues we're having right now is keeping their playroom clean, and getting through the pre-bedtime routine. It feels like it's just a constant verbal reminder from us ... "ok get your pjs on ... stop doing that...stop fooling around... time to brush your teeth...pick up your toys...put this away...you know where this goes....you know that doesn't go there..." We sound like a broken record.

So we're trying this Chore Chart in the hopes that a visual chart will help them follow through on what they need to do without falling in to the 'nagging parent' trap. I know I could've tried this a long time ago by just creating my own chart, but I'm lazy (and not creative) like that. Besides, why re-create the wheel when this 100% free, pre-made chore chart is out there for me to use!

I can select a theme based by age and then there are different options for the chores you want filled in on the chart. You can also assign each chore to certain days of the week each one needs to be one. It can either be printed off or used online. When used online there are different sticker options that can be used when the chore is complete.

At the end of the week you pick the result of whether they did a great job or need improvement based on how well they did completing their chores. There is also an optional point system for additional rewards. You can assign each chore a 'moolah' point - the points go in the 'moolah bank' where you can assign different rewards based on their points.

Here's hoping this will bring about a positive change in helping Kayla and Lucas be more responsible for doing what they need to do ... without us calling after them every 5 seconds.

This is a sponsored post from Mom Select and Goal For It.

Denied A Transplant

2012-01-14T22:40:00.002-05:00

Amelia is a 2 yr old girl who has Wolf Hirshorn syndrome. I hadn't heard of this syndrome before today. I don't know what it entails, nor do I know the back story of Amelia. All I know is the blog post from her mom saying that Amelia will need a kidney transplant in about 6 months to a year.

The Nephrology doctor told them he wouldn't recommend she get the transplant because she is mentally retarded. He says she will never get on the waiting list because of that.

The parents say that isn't a problem; when the time comes one of them plan on donating. And if neither of them are a match they have a large family and someone will donate.

The doctor says that still doesn't matter. To quote from the blog post, "“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing."

I can't believe a child would be denied an organ transplant because of their cognitive delay. How does that make their quality of life any less? How does that make them any less deserving of a chance to continue with their life?

I didn't realize this wasn't unusual. Since the story broke on FB I have seen several comments from parents with children with Down syndrome say they were told the same thing about if their child needed a transplant - they wouldn't be eligible.

How can that even be legal?

It reminded me of the Baby Doe case. Although that was reverse in that the parents didn't want the life-saving surgery for their son and the doctors actually did. Baby Doe, who had Down syndrome, was born with esophageal atresia. Surgery would attach his esophagus but his parents elected not to have the surgery performed. Without the surgery Baby Doe died.

Reading more on the Baby Doe law I see that it was amended in 1984 to include children, not just newborns. Specifically stating, "the amendment extended the laws defining child abuse to include the withholding of fluids, food, and medically indicated treatment from disabled children."

Based on the wording in that law I don't see how Amelia, or any child with a cognitive disability, could be denied a transplant - isn't a transplant considered "medically indicated treatment?"

A petition has been started asking CHOP to allow the transplant to happen. I signed it, but after the meeting with that doctor and social worker, I think I'd rather have my child's transplant happen at another hospital.

Not An Angel

2012-01-13T14:55:00.003-05:00

I'm looking at Kayla's Weekly Behavior Report from school and wonder where my 'angel' of a child is ... you know ... because kids with Down syndrome are such angels, right? Riiiight.

She only had 4 days of school this week and couldn't even get one green face. At least there were no reds, but she very easily could've been marked red on any of the days.

This is my 'angel's week at school:

Hit another student
Not paying attention in class
Ran into woods at recess
Sticking tongue out at other students; not listening

The first thing she tells me when she gets off the bus is that she 'been bad' or had 'a bad day' or 'got a red face' (although this week it was all yellow faces). Most of the time she can tell me exactly what she did, the reason she didn't get a happy face. But when I ask her the 'why' of it ... why did you hit someone else? Did they get in your face? Take something from you? What provoked it? She usually can't tell me, or doesn't have the words to tell me.

It's frustrating not knowing why she does some of the things she does.

See? It's not all sunshine and tulips in Holland.

It's yellow and red faces.
It's being 'bad.'
It's not making the right choices.
It's not keeping hands to yourself.
It's running away to places you're not supposed to go.
It's sitting in time-out every day after school.

Imagine that. She sounds more like any number of typical kids getting in trouble at school.

Welcome to Holland indeed.

Animated Valentine Cards

2012-01-12T15:41:00.000-05:00

I really like the 3D ornaments I ordered from Snapily for Christmas. The kids also got a kick out of seeing their pictures on the ornaments I ordered for them. Right now Snapily has a couple of sales going on in just in time for Valentine's Day.

Their new Favor Cards are a fun and unique version of traditional children's Valentine's cards. Just like the boxed cards you buy at the store, these cards are small enough to fit in a wallet but they can be personalized with 2 images that can be either animated or in 3D. What a fun twist on Valentine day cards to hand out to classmates!

You can buy one pack of Favor Cards (contains 20 cards) and get a second pack for 75% off! Just use the promo code LOVE75 through 2/14. This promo code offer is also good to use on business cards too.

If you want a fun card idea to give your child(ren), or other loved one, for Valentine's Day, you can use promo code HOT2OFF for $2 off. (This promo code is good for ANY item on the website.) Photo cards (which are also personalized with your picture and a choice between animated and 3D) priced at $3.99 would be $1.99. Promo good through 3/30. (The offers can't be combined but can be ordered separately.)

Special Exposure Wednesday

2012-01-11T16:43:00.000-05:00

We took a Pirate Walking Tour around Charleston. The favorite part was being able to hold the sword.

Gluten-Free Saver

2012-01-10T21:07:00.000-05:00

I frequently use sites like Groupon, and Living Social for local and national daily deals. They have deals for movie tickets, local attractions, restaurants, personal services like hair salons, spas etc. We've taken advantage of several restaurant deals to try out knew restaurants in our area. It's also been a fun way to see different attractions too - like when we did the Dolphin Tour on Edisto Island.

So I was very excited when someone on FB that there is one for gluten-free items - Gluten-Free Saver.! It is hard to find coupons, sales, and good deals on gluten-free foods, so can't wait to see the deals that come up for this one! The current deal being offered is to save 57% off the new Jules' Cupboard Trial Pack from Jules' Gluten Free. I definitely had to sign up for that offer.

Down Syndrome Conference in Bulgaria

2012-01-09T21:52:00.000-05:00

Connecting the Rainbow is an outreach program of Reece's Rainbow. Last May, Shelley traveled to Bulgaria for a Down syndrome conference. It's slow-growing, but there are families in Bulgaria who are choosing to keep their children born with Down syndrome instead of automatically leaving them at the hospital to go to the orphanages.

Connecting the Rainbow is providing support and information to families in Eastern Europe who are raising their children with Down syndrome. Considering those with disabilities are shut away in that society this is no easy or small feat. Parents are told there is no place in society for children like theirs; children born with Down syndrome.

Connecting the Rainbow is going back to Bulgaria for another conference with the Down syndrome support group and need your help with sharing information for the parents there.

A book is being put together for the families. Pictures and stories are needed for this book. If you have a blog post about the joys and challenges of raising a child with Down syndrome - anything to encourage the families - or can write something for in an email - please email Angela at mom2mariah at gmail dot com (by the 16gh) with your information and the link to your blog post.

The ultimate goal is to eliminate the need for Reece's Rainbow to exist - because families will be keeping their children - but awareness needs to be made and attitudes need to change.

A Valuable LIfe

2012-01-08T21:54:00.000-05:00

In the article My Brother's Valuable Life, Cal Thomas writes, "How does one measure whether a life was a success, or a failure?"

He goes on to say some people measure it by how well-known the person was, or the amount of money, or possessions, they accumulated. Others measure it by whether a person made a major contribution to society.

Cal's brother was born with Down syndrome. He passed away recent. Cal thoughts are such that if you're judging the success of a person's life on the above standards, then by that, his brother was a failure.

He goes on to say, "If, however, your standard for a successful life is how that life positively touched others, then my brother's life was a resounding success."

What a great way to look at the success of your life. Not by how much you make, how powerful or influential you are, how many (if any) degrees you have, what type of job you have... but by how your life has positively touched others.

To (loosely) quote Martin Luther King, Jr and his dream that his children will be judged by the content of their character; I, too, have the same dream for Kayla. For Kayla, for those with Down syndrome, and for those with any type of special needs or disability. That they, too, will be judged to have a successful life based on the content of their character and how they positively touched others. Not based on an IQ score, or what kind of job they have, or whether or not they live independently.

Kayla's life is valuable, and it will be successful because of the kind of person she grows up to be. The kind of friends she is. The love and goodness in her heart.

Free Entrance (& Lifetime Pass) at National Parks

2012-01-06T14:20:00.000-05:00

Every year the National Park Service has several fee-free days at more than 100 national parks.

The first one for this year is Martin Luther King, Jr weekend - Jan 14-16.

For those who might not know, the National Park Service offers a life-time pass for those with a permanent disability. The Access Pass can be obtained, for free, in person; or for $10 by mail.

This pass allows the person with a disability and up to 3 adult guests (children under 16 are always free) free admittance to per-person fee parks, and free entrance for sites that charge per vehicle.

Go here for more information on the Access Pass.

Christmas in FL

2012-01-05T11:08:00.001-05:00

We went to FL to see my dad and his wife for a few days for Christmas. My brother and his family were there from TN. I hadn't seen him in a few years, so it was nice for us to all be together. Sure wish we could get together more often!

I posted previously that my dad is battling cancer again. His latest cat scan showed the lesions on his liver have increased. His dr is taking him off the chemo he had been on (thinking it's not working for him anymore) and trying a different chemo. Prayers are appreciated that this other chemo will start to reduce those tumors and that the side effects won't be too harsh for my dad. Thank you!

Special Exposure Wednesday

2012-01-04T11:59:00.000-05:00

Kayla came off the bus running up the driveway - she was so excited to show me what she got from the treasure box (Toy Story) in drama class. Unfortunately we don't have a VHS anymore so she brought it back to school to exchange it. I wonder what she'll bring home today instead.

Knock Knock

2012-01-03T15:30:00.000-05:00

Lucas was trying to tell knock-knock jokes to us last night. Except he doesn't quite know how yet. So he kept going, "knock knock? who's there?" Before giving us a chance to answer, "Who's there?"

So we told him the 'boo. boo who? don't cry it's only me.' joke and he seemed to enjoy that one as he kept trying to tell it over and over.

Next we tried teaching him this one:
Me: Knock knock
Joe: Who's there?
Me: Banana
Joe: Banana who?
(repeat 3 or 4 times)
Me: Knock knock
Joe: Who's there?
Me: Orange
Joe: Orange who?
Me: Aren't you glad I didn't say banana again?

And then Joe and I started laughing. And Kayla started laughing because we were.

Lucas was looking back and forth between us. Then in all seriousness he said, "What is so funny about that?"

365 Challenge

2012-01-02T22:30:00.000-05:00

I'm going to attempt the 365 challenge. The challenge where you take and post a picture a day for a year. I'm hoping I'll learn a lot more about my camera, to greatly improve my photography skills ... and to move beyond what I usually shoot in (ie... usually automatic). I also hope this will get some creative juices flowing in coming up with something to take a picture of every day of the year!

I started a new blog for this project: A Year Of Photographs.

We'll see how this goes ...

Polar Bear Plunge

2012-01-01T23:16:00.000-05:00

We spent the first day on 2012 on Sullivan's Island for the Dunleavy's Pub Polar Bear Plunge. The plunge benefits the SC Special Olympics and their mid-winter games. This was our first time participating, and it won't be the last! What a gorgeous day, too!

We volunteered to be a part of the 'bucket brigade' to walk around and collect donations. I thought I'd spread a little awareness by wearing my +15 shirt!

People really couldn't resist saying no to Kayla and Lucas when they asked, "Would you like to make a donation?" And Kayla loved handing out the "I Donated" stickers to everyone - sometimes even before they donated!

Absolutely beautiful weather today! This was the beach pre-crowd.

Who you gonna call? Ghostbusters! Of course this was lost on my kids, but I had to take their picture with this group.

We didn't actually plunge in the ocean; while it was a beautiful day the water was only 57 degrees and well, that was a bit too cold for me! But we did plunge our feet in the water! Kayla had so much fun jumping in the water, the cold didn't seem to bother her at all... and I had to pull her out when it was time to go. She just did NOT want to leave!

For some reason Lucas thought his shirt was going to get wet so he held it up the whole time!

How was your first day of the new year?

Different, Not Less

2011-12-30T14:24:00.000-05:00

I saw this quote on Facebook yesterday:

Different
not less

and thought about how that applies to Kayla.

Yes she is different in that she has an extra chromosome. (But really, how 'different' is she? A lot of people out there have an extra - or even missing - chromosome. There are other people who have a single simian crease across the palm of their hand, others who have Brushfield spots in their eyes, others who have speech issues, others who have cognitive delays.)

But having a difference does not make her less.

It doesn't make her
...less than human.
...less of a daughter, granddaughter, sister, niece, cousin.
...less than a friend.
...less deserving of life.
...less deserving of opportunities - educational and employment.
...less deserving of love.
...less deserving of respect.
...less deserving of the chance to play sports.
...less deserving of a chance

She's not
...less capable of learning.
...less capable of love.
...less capable of being a friend.
...less capable of being able to play.
...less capable of knowing how to laugh.
...less capable of hurting.
...less capable of having fun.
...less capable of experiencing and enjoying life.
...less capable of following the rules.
...less capable of having a job.
...less capable of having feelings.

Different, yes. But not less. Not less than anything.

Special Exposure Wednesday

2011-12-28T12:55:00.000-05:00

We went to FL to see my dad for a few days for Christmas ... my brother and his family were there from TN as well. The kids enjoyed seeing their Uncle Mike!

American Families Saving Children With Down Syndrome

2011-12-27T14:53:00.000-05:00

Last night ABC News aired a segment on a family in Utah who adopted a little girl with Down syndrome from Ukraine.

What a positive message this was and such great awareness for the plight of orphans in Eastern Europe and for Reece's Rainbow!

Here is the video that aired: video platform video management video solutions video player

Here is another short video on their website about Mia and her new family:
video platform video management video solutions video player

There is also a great article on ABC News about the whole process the Cox family went through. ABC News went inside a few mental institutions in Ukraine and reported on the conditions the children were living in. Children as young as 5 living in adult mental institutions; with adults who have severe mental illnesses. Sent there to live out their lives.

Here is a quote for their adoption coordinator in Ukraine about what life (if you can call it that) is like for a child with Down syndrome born in Ukraine. "Children with Down syndrome are considered outcasts, she said, throwaways. That's why they place them to closed institutions They have to spend the rest of life being outside of society. Absolutely," Angelina said. "They ... have absolutely no choices, no opportunities in this society."

How sad is that?

'Tis The Season!

2011-12-23T10:35:00.002-05:00

Last year Joe took the kids with him when he went to buy me something for Christmas. The kids came home saying, "Mommy we bought you a book!" (the latest Stephen King).

This year, Joe again took the kids out with him (will he ever learn?)

When they came in the door Kayla said, "Mommy we bought you a screwdriver!" Lucas reiterated that they did, indeed, buy me screwdrivers.

Joe said on the way home he asked them what they bought for me. Kayla said something that sounded pretty close to what it was so he said, "No... remember we don't tell mommy we bought that. What is it we say? We tell her we bought screwdrivers!"

Lucas said, "That isn't going to make Mommy very happy."

And just how does his little 3 yr old mind comprehend something like that? Why would he think that wouldn't make me very happy?

So I asked Lucas, "Why did you say that wouldn't make me very happy?"

Lucas, "Because it won't"

Me, "But why won't it? Why wouldn't I be happy with screwdrivers?

My ever-logical son replied, "Because we already have some!"

Well, there you go!

And to the kids' credit... so far they haven't let slip what they really bought me. Because I know it's not screwdrivers!

Bedtime Chatter

2011-12-22T15:37:00.000-05:00

The upstairs to our house has a big loft area. A good portion of the loft area separates Kayla's and Lucas's bedrooms ... so they aren't right next to each other.

They rarely try to talk to each other after 'lights out.' Doing so would require using very loud voices to be heard, and I think it's just never occurred to Kayla to try to do this. She's much like her father, falling asleep 5 minutes after her head hits the pillow.

Lucas has 'trouble' falling asleep. Or so he says a minute after I walk out of his room from tucking him in. "I can't sleep!"

The other night he decided to try and talk to Kayla. It involved a bit of yelling to be heard from room to room, and not realizing one person said something, so they were also talking over each other. I sat on the top steps amused by their conversation.

L: Kayla!
K: Stop Lucas!
L: Kayla?
K: You waking me up!
L: Kayla!
K: I trying to sleep! I going to Florida! (Before bed we had talked about going to FL to visit my dad)
L: What? California?
K: Yes, going to Florida!
L: Kayla did you say California?
K: Yes! Going to Florida!
L: Come here Kayla!
K: What?
L: I want you Kayla!
K: Ok thank you!
L: Come here Kayla!
K: What Lucas?
L: I like you now Kayla!
K: What? I love you? Ok thank you!

Special Exposure Wednesday

2011-12-21T14:04:00.000-05:00

Getting a chance to steer the boat on an eco-tour/dolphin-watching trip we took last month.

Cha Cha Slide

2011-12-20T15:03:00.000-05:00

Last week we went to the Down Syndrome Association of Lowcountry's Christmas party. The kids had such a fun time! They were on the dance floor pretty much the whole time just having a blast with friends.

I had to capture a video of the group dancing to the Cha Cha Slide. I think they did pretty well!

Make a video - it's fun, easy and free!
www.onetruemedia.com

and I better post these pictures from the party before it's already the new year!

Hickory Farms No Kid Hungry Campaign

2011-12-19T16:36:00.001-05:00

One of my favorite holiday traditions is indulging in some sausage and cheese from Hickory Farms. As soon as I see the Hickory Farms stores or kiosks open in the mall I know the holiday season has begun!

I recently had the opportunity, thanks to Hickory Farms and Mom Central Consulting, to host a yummy party from some friends. It was a great time to enjoy the company of friends, let our kids play together, let the husbands watch some football (one of the husbands, upon hearing it was a HF party, stated he was so there! Guess he likes their products too!), take a break from the rush and craziness the holidays can bring, and sample some yummy sausage and cheese!

Hickory Farms does more than just produce some delicious foods - they give back to the community as well. This holiday season they will donate $5 from each party planner gift box to Share Our Strength's No Kid Hungry campaign - a national non-profit working to end childhood hunger in America.

They are also a supporter of the military. They provide free shipping on APO/FPO military addresses across the globe. This came in handy for us a couple years ago when Joe was deployed. It was hard to come up with ideas of what to send him for Christmas and this turned out to be a great gift idea. Something he didn't need to worry about packing up and taking back with him when he came home.

My favorite dip was the Cranberry Mustard dip. The Honey Pineapple Mustard was a close second though!

We sampled 7 different cheeses - and thanks to Joe for labeling each cheese so we knew which flavors we were tasting! (Parmesan Herb Blend is one of my new favorites; along with my old favorite of Cheddar and Havarti blend).

Hickory Farms provided gift boxes for guests to take home - which of course is the real reason they all came over! Ha!

Right now on Hickory Farms online you can get 40% off select items and Free Shipping on orders of $35+.

Hickory Farms will always be a part of our holiday traditions!

“I wrote this review while participating in a campaign by Mom Central Consulting on behalf of Hickory Farms and received product samples to facilitate my review and a promotional item to thank me for taking the time to participate.”

Lone Star Steakhouse "Miracle Cake" Program

2011-12-17T10:16:00.000-05:00

Lone Star Steakhouse launched the “Miracle Cake” program in March to donate a portion of the proceeds from the sales of their Triple Chocolate Miracle Cake to Children’s Miracle Network. Through the sale of their cake, the organization reached their $100,000 fundraising goal in November and is rededicating their commitment to Children’s Miracle Network by setting a goal to raise an additional $100,000 during December.

The funds raised in local restaurants stay in those communities benefiting the nearest Children’s Miracle Network Hospital funding medical care, research and education that saves and improves the lives of the 17 million children treated each year.

In December, guests can either purchase a slice of Triple Chocolate Miracle Cake to help raise funds or make a donation to the organization. Lone Star will give guests that donate any amount over $1 during December a free appetizer card for a future visit.

Free Shipping at Snapily

2011-12-16T09:15:00.000-05:00

If you still need to order holiday cards check out Snapily! Through December 31st Snapily is offering Free Shipping with promo code SHIPFREE. I love free shipping codes.

I was surprised to see how many different cards they have available. I love the 3D effect cards - too cool! - and the best part is you don't even need the 3D glasses. These are my favorite of what they offer.

I also came across some great gift ideas like the personalized backpack tags. Kayla is rough on her backpacks so she's getting a new one for Christmas; this would be a great addition. I also like the option of creating my own bookmarks. You can create bookmarks with personal pictures and messages. What a great idea for teachers! You can even use your images to create a personalized ornament. Hung with a high quality ribbon, the ornaments slight movements will show off images of your loved ones in 3D depth OR flip Animation. Great for the grandparents ... or for people who seem to have everything already and you can't figure out what to get them. Personalized photo gifts seem to make anyone happy!

The Holidays are approaching faster than I can keep up with! A few months ago I thought I was going to be on top of things .. but here I am, doing last minute things! Need to do better next year!

Special Exposure Wednesday

2011-12-14T13:43:00.001-05:00

Visiting with Santa! The first picture was at the Children's Museum, hence why she is in a princess dress-up dress. That's the first thing she does when we go to the museum!

At the Summerville Miracle League party

and Lucas too, of course!

Sweet Carolina

2011-12-13T22:25:00.000-05:00

A couple of weeks ago Kayla and I were asked to be on a segment of the local cable show Sweet Carolina. What a neat experience this was! Kayla liked being able to see herself on TV while we were filming it. I so appreciated the chance to share our story about winning the scholarship for the "Most Beautiful Eyes" contest; and putting in a little plug to support the ABLE Act.

And Lucas, oh my dear boy. Of course he didn't want to be left out. He had the option to sit on my lap during the interview, or sit in the chairs opposite us. I should've known he wasn't going to stay long in those chairs. He made himself known. He didn't take the easy way to get on TV (sitting in my lap). He wasn't loud, in fact I don't think he talked at all during the taping, but he sure did make his appearance!

Kayla kept swiveling in her chair and I would put my hand on her leg or arm to make her stop. Watching the video makes me laugh because a few times she indignantly tells me 'stop!' I guess I was the one who was distracting her!

If you want to see the video just go to this link. Right under the video that is playing you'll see a play list by dates of previous shows. Just click on 11/30. We are the last segment so we don't show until 19 min 10 sec. (If you let the light gray status bar load the video all the way you can then move the slider forward to 19:10 so you don't have to watch through the whole segment.) I can't figure out a way to embed just that portion of the video on the blog, or I would've just done that.

Lucas-isms

2011-12-11T15:38:00.000-05:00

Running late one morning I was buckling Lucas in his car seat and said, "See Lucas, you're making me late." and he retorted, "Last morning when we went to MOPS you made YOURSELF late."

Another night of encouraging Lucas to eat his veggies because they will make him grow bigger he tells me, "I just want my apple, that will make me grow bigger."

To encourage the kids to eat all their dinner I tell them we have to eat the rainbow. One night after telling Lucas he didn't eat his green yet he said, "I just want to eat brown tonight."

Lucas do you want to wear long-sleeves or short sleeves? His answer, "Short sleeves. But not short sleeve pants."

Lucas and Kayla playing w/pretend food and Lucas telling Kayla, "You can have this pizza Kayla, it's gluten-free."

Lucas asking if grapes are gluten-free.

At respite one of the caregivers asked Lucas how old he is, he said, "I'm 3 and my sister can't have wheat."

A lady was walking next to us in the parking lot and started talking on her bluetooth. Lucas asked me, "Why is she talking to herself?"

Lucas pointed to a lady and said, "She has silly hair!" He thought her hairstyle was so amusing. I just hoped she didn't actually hear him!

Special Exposure Wednesday

2011-12-07T17:57:00.000-05:00

A very exciting moment for us from Chicago!

Crunchmaster Crackers (GF!) Review & Giveaway

2011-12-06T16:23:00.001-05:00

Congrats to Cindy for winning the case of Crunchmaster crackers!

When Kayla was first diagnosed with Celiac disease I wondered what snacks she would be able to eat. I knew all her (then) current favorites would be out.

My first experience in going shopping for her at the local grocery store didn't turn out too well. There wasn't much of a selection and what there was didn't sound too appealing. Nevertheless I picked out some crackers that seemed like they would work; at least according to the very deceptive description on the packaging. Let's just say the whole package ended up in the trash. My mom and I both made a face at the first bite of the cracker which seemed like dry, seasoned cardboard. I still offered it to Kayla because, hey, her taste buds are different and she might like it! No such luck. She didn't care for them either.

Since then we have found a few brands of crackers that we rotate out but it isn't much of a selection ... and the ones we have been using don't seem to have any flavor variety.

A while ago I signed up with Moms Meet. Its an "...online resource that empowers moms to come together in an informal setting and talk about the latest on raising healthy families and living green." One of their opportunities is for Mom Ambassadors to sample the latest healthy, and/or green, products.

It was through this opportunity that I received Crunchmaster Multi-Grain crackers to review. These first thing about these crackers is they are certified gluten-free, all natural, saturated fat free, cholesterol free, and the Sea Salt is also vegan/dairy free.

I had seen them in the store but hadn't yet tried them; so this was a perfect opportunity to try them out and see if Kayla approved - then we could add them to our cracker selection.

We sampled the White Cheddar, Sea Salt, and Roasted Vegetable. The verdict? A big hit! These will now be among the rotating boxes of crackers we keep on hand for Kayla (and I imagine the rest of the family will be sharing in these as well!)

All of the crackers are sturdy, not crumbly (like a brand of crackers that Kayla likes, but is always broken up in the bag), and hold up well with dips. They also have just the right amount of flavor and variety to the crackers.

Kayla's favorite seemed to be the Sea Salt and White Cheddar. She didn't care too much for the Roasted Vegetable. I didn't care as much for the Sea Salt by itself, but really liked it with a dip such as salsa, hummus, or cheese. White Cheddar was my favorite. Joe's favorite was Roasted Vegetable. Lucas's favorite seemed to be the White Cheddar as well.

Crunchmaster has other products in their line as well including, but not limited to, Multi-Seed Crackers (in 4 varieties), Multi-Grain Crisps, and 7 Ancient Grains crackers.

You can follow them on Facebook and also save $1 on your purchase.

I have a case, yes a CASE, (12 full-size bags) of Crunchmaster Multi-Grain White Cheddar Crackers to give away (limited to US addresses only). Just leave a comment on this post (making sure I can contact you if you're the winner!) letting me know if you've ever tried Crunchmaster before, and what variety you like, or think you'd like.

I received this product for free from the sponsor of the Moms Meet program, May Media Group LLC, who received it directly from the manufacturer. As a Moms Meet blogger, I agreed to use this product and post my opinion on my blog. My opinions do not necessarily reflect the opinions of May Media Group LLC or the manufacturer of the product.

The Passed Over Babes

2011-12-04T21:20:00.000-05:00

Please take a few minutes and click over to Julia's blog post about The Passed Over Babes. These are all children who are on Reece's Rainbow Angel Tree. The goal of the Angel Tree is to get all the kids at least $1000 in their accounts to help with their adoption. These are all kids waiting for a family... and money is usually the main obstacle preventing a family from adopting.

Julia's post highlights the children who have been on the Angel Tree list the longest. She is having a great giveaway on her blog- worth over $600. All you have to do is donate $5 to 2 or more of the children to be entered in the giveaway. That $5 can help a child finally be adopted into a forever family.

Shutterfly Holiday Cards Giveaway

2011-12-03T19:54:00.001-05:00

Contest is now closed. Congrats to Crittle, The Hailey Herald and Shutterfly Addict!

Last year I used a great Shutterfly blogger promotion to order our Christmas cards; and this year I'll be doing the same! Plus I have 3 codes to giveaway to 3 winners for 25 free 5x7 folded or flat stationary holiday cards!

Hopefully there are some procrastinators out there (like me, ahem!) that haven't made/ordered their holiday cards and can use this great promotion!

I really had no idea what photos I was going to use for our holiday card this year and hadn't even yet attempted to get any photo-card-worthy pictures. Thank goodness for our trip to Chicago though! We had a photo shoot while we were there. Well, the photo shoot was really for Kayla, but they were very generous and did family photo as well. So now I finally have the perfect pictures to use for our Christmas cards.

The hard part was picking the perfect card to fit those pictures in! I like the cards with more than one picture on them as it is so hard to just pick one picture to use!

Right now cards are up to 40% off and you can get free shipping on orders of $50 or more by using code SHIP50.

While looking around on the site (because they also offer more than just prints and cards) I got some great ideas to use for photo gifts. Especially helpful for the people that seem to have everything and you have no idea what to get them!

This is what I finally ended up getting. We didn't get a professional picture of Kayla and Lucas together in Chicago so I used the one that was taken at the NDSC Convention this summer.

Stationery card

View the entire collection of cards.

If you'd like to win a code for 25 free cards just leave a comment on this post (making sure I have a way to get in touch with you!) telling me which design is your favorite.

I received my own set of free holiday cards from Shutterfly in exchange for this blog post.

International Day of People With Disabilities

2011-12-02T22:42:00.000-05:00

December 3rd marks the International Day of People With Disabilities. This day is an international observance promoted by the United Nations since 1992.

The theme for 2011 is "Together for a better world for all: Including persons with disabilities in development."
"Persons with disabilities encounter many disadvantages in their societies and are often subjected to stigma and discrimination. They remain largely marginalized, disproportionately poorer, frequently unemployed and have higher rates of mortality. Furthermore, they are largely excluded from civil and political processes and are overwhelmingly voiceless in matters that affect them and their society."

You can read the Presidential Proclamation. "...we recommit to ensuring people living with disabilities enjoy full equality and unhindered participation in all facets of our national life."

This is what I have to say:
- It is time to pass the ABLE Act
- It is time to allow people w/disabilities to have regular educational savings account without the need of a special needs lawyer setting up a special needs trust
-It is time to allow people w/disabilities to have more than $2K in assets in their name without losing benefits they still need to remain as independent as possible
- It is time inclusion happens in every school
- It is time the unemployment rate isn't so high for people w/disabilities
- It is time people w/disabilities aren't treated like less-than human beings
- It is time people w/disabilities are treated with respect
- It is time people w/disabilities are recognized for their value, worth, and contributions to society

Special Exposure Wednesday

2011-11-30T13:02:00.001-05:00

A sneak peek at one of the photos from the photo shoot while we were in Chicago. Love. Love. Love it. One of my absolute favorite photos of her. She looks so grown up in this picture.

For Arlynn's Sister

2011-11-29T16:51:00.000-05:00

For Arlynn's Sister ... not sure if you're still reading my blog or not, but I hope you'll see this post meant for you!

A couple weeks ago you left me a comment asking my permission to use something for a school project, but there was no email associated with your comment or blogger account.

I went to your blog (your sister is adorable, BTW!) and couldn't find an email there either. I was going to leave you a comment on your blog but it doesn't appear you have comments enabled. So I have no way of contacting you, that I could find anyway, except by posting on my blog for you.

So if you see this please leave me a comment with your email ... or just email me mdbeau98 at yahoo dot com so I can reply to you.

Thanks!

Big Signing Time Sale!

2011-11-28T09:22:00.000-05:00

Through today you can get 40% off orders of Signing Time DVDs when you spend $40 or more.

This is a great discount especially if you've been wanting to order (or need holiday gift ideas to give to the grandparents etc!) Baby Signing Time DVD Gift Set, Baby Signing Time: Full Collection!, Signing Time Series 1 DVDs, or Signing Time Series 2 DVDs.

It also applies to orders including Flash Cards, Music CDs, Books, and T-Shirts.

(It does exclude gift cards, digital downloads from Signing Time on Demand and Potty Watch.)

We loved using the Signing Time DVDs when Kayla was younger. It sure did help bridge that gap of communication when she was mostly still non-verbal, or we had trouble understanding her speech.

Lucas watched the videos too and picked up signing easily enough, but he also was pretty verbal so he dropped signing pretty quickly! Every once in a while the kids will watch a video to refresh their signing skills... which is coming in handy now. We recently met a family who has a daughter Kayla's age who has CP and is deaf. So the kids are being reminded to use their signs when they talk with her and I'm glad they can make that connection with her.

This is still one of my all-time favorite videos of Kayla signing and signing along with Rachel.

Trip To Chicago

2011-11-25T16:06:00.000-05:00

In pictures, here is a recap of our whirlwind trip to Chicago:

On our way!

Picked up from the airport in a limo

View from hotel room

Exploring Michigan Ave (the Conrad was our hotel)

The kids loved walking around and seeing all the "really, really tall buildings!" everywhere

We returned to our hotel room after walking around just in time to find they were bringing complimentary milk and cookies! (Unfortunately we couldn't enjoy any right away because we were getting ready to meet the group for dinner!) I did ask if they happened to have anything gluten-free and they called back and said the chef would make some chocolate-covered strawberries for Kayla!

One of the sponsors of the contest - Real Kids Shades - took all the families out to dinner Thur night. We went to Rainforest Cafe (where the manager was great in talking to me about what Kayla could have and they would prepare it off to the side to reduce the risk of any contamination.)

On our way back to our room after dinner we encountered Santa!

On Friday we walked to the Navy Pier (but didn't stay outside to walk around because it was too windy!) But we did go inside to the Children's Museum - this is the view from one of the windows.

We were all dressed up from the photo shoot and had some time before the dinner and awards banquet, so I took some photos in the hotel lobby.

At the dinner:

The next morning we were able to meet up with some friends that I've known online (and we met in person in San Antonio for the NDSC Convention). Lisa and her kids Cori and Jamie!

Heading back to the airport:

The excitement of the whole weekend finally caught up with Kayla. 5 minutes after we were in the air she leaned over like this and passed out.

Special Exposure Wednesday

2011-11-23T12:06:00.000-05:00

The Post & Courier did another article on Kayla: Eyes Win The Prize.

I love how they again cropped a picture to highlight her eyes and put it on the cover!

ABC News 4 also came out for another interview. Local Girl Wins National Award for Most Beautiful Eyes Contest.

And the Summerville Journal Scene's article came out today: Her Eyes Won The Prize. What I like about this article is that I started to ramble on about the scholarship, the need for having a special-needs attorney make sure we set this all up so it won't negatively impact Kayla in the future, and the hope that Congress will pass the ABLE Act ... this is a perfect example of how the ABLE Act could be used.

Well Hello, Beautiful Eyes!

2011-11-20T07:46:00.000-05:00

So... most people already know via Facebook ... but I have to announce on my blog as well ...

Kayla is the grand prize winner of Prevent Blindness America's Most Beautiful Eyes Contest!

I still don't think it has quite sunk in yet! She is the recipient of a $25K college scholarship (maybe that is the part that hasn't sunk in yet!)

And she will now be the face of the Star Pupil program for the next year!

What an amazing time we had in Chicago meeting the wonderful employees from PBA and the sponsors of the contest.

I know this post doesn't do our trip justice - I will have to do another post later; but we just got home last night and we're already off for a dolphin site-seeing trip this morning!

Thank you for sharing in our excitement!

Kayla is a Finalist!

2011-11-17T12:35:00.005-05:00

I just updated my blog, but in case you're visiting via a direct link to this post here is the update to the contest: Kayla is the grand prize winner! She is the face of the Star Pupil program AND won a $25K college scholarship! See the press release from my blogs home page.

So... remember last month when I announced that Kayla was the state winner for the Most Beautiful Eyes contest?

A panel from Prevent Blindness America narrowed the state winners down .to 5.

Those 5 were sent to the 3 celebrity judges (former TV broadcaster Larry King, Pittsburgh Pirates player Derek Lee, and NASA astronaut Walter Cunningham). The celebrity judges picked the 1st, 2nd, and 3rd place winners.

A few weeks ago I got the call that Kayla was one of the top 3 finalists! Wow!

Kayla has become a little celebrity around town.

The Post and Courier did a follow-up article.

The Summerville Journal Scene wrote and article.

ABC News 4 came out for an interview.

Here is the video clip:

We were at Ye Olde Fashioned Ice Cream and Sandwich Cafe the other day and when we walked in the lady behind the counter said to me, "She looks like the girl in the paper with the pretty eyes." Me, "Yep! That's her!"

The winner will be announced Friday night at the annual awards dinner and banquet.

The winner will receive a $25K college scholarship (2nd and 3rd place receive scholarships too) and become the face of their Star Pupil program for a year. Excited much?!

Please keep your fingers crossed for Kayla!

Special Exposure Wednesday

2011-11-16T12:50:00.000-05:00

Enjoying a nice day at Palmetto Islands County Park.

I'm Better At...

2011-11-15T16:00:00.000-05:00

A few weeks ago the kids were at the table when I heard Lucas make a comment. He said, "I'm better at coloring." It wasn't said in a boastful, mean, or teasing way. More like a matter-of-fact way. He was just making a statement. I was pretty sure I knew what he meant by that and it made my heart heavy. So my first, quick response was to tell him something like "We don't say that."

He asked me, "What don't we say?" Just to be sure I did understand what he was said I asked him to say it again. He seemed a little shy and unsure, but he said again that he was better at coloring. I asked him what he meant by that, who was he better at coloring? I think he was a little embarrassed and didn't want to say anymore. He knew he said something that got my attention but couldn't quite figure out what it was. Finally he said, "Better than Kayla."

So I told him "That's what we don't say, that we're better at something." He asked, "What word are we not supposed to say?"

Bless his heart. He thought he said a 'bad' word. I tried to explain to him that he colors his way and she colors her way but we shouldn't say that we're better than someone else.

Then this morning he was looking at one of Kayla's pages she colored and said, "I don't like scribbling." I asked what he meant and he mimicked scribbling across her page. I said that Kayla colored that page. He said, "I don't like it."

I told him that wasn't nice to say because Kayla tries her best to color. Then I went on to say, "Remember Kayla has Down syndrome? That means some things are harder for Kayla to do. Writing and coloring are harder for Kayla, but she still tries her best. It isn't nice to say we don't like something that someone did the best they could."

Lucas has heard "Down syndrome" before - it's not that we don't say it. We talk about why we go to the Buddy Walk, and it has come up other times that Kayla "has Down syndrome." But I know that doesn't mean anything to either of them right now.

I knew eventually I'd have the talk with Lucas about Ds and what it means for Kayla and how it affects her; I just didn't expect it to be so soon. I didn't expect to have to start talking to him about it when he was 3. Not that it's a bad thing; the earlier the better so he'll be used to this being a natural part of our lives and discussion. I just didn't think he would notice subtle differences so easily at this age.

And looking at the differences in their coloring pages really brings home to me how the low muscle tone affects Kayla's fine motor skills. It is much harder for her to color and write. He is very precise, careful, controlled, and detailed when he colors. Kayla's fine motor skills hinder her from coloring as easily as Lucas as she uses wide, long strokes.

I have no idea why this one won't upload right-side up! But it was just to show how small Lucas can color around the rim of the bowl and the letters.

I do get glimpses of Lucas being the caring, concerned and protective brother though. Before any of these conversations there was a day that we were at the library and they were using the computers to play a few games. A girl younger than Kayla came over to watch her on the computer and kept trying to help out. Lucas was sitting next to Kayla and kept watching this girl; finally he kept telling her, "She doesn't need your help. My sister doesn't need help."

Cancer is Rearing its Ugly Head Again

2011-11-13T22:38:00.000-05:00

In Sep 2009 my dad was at the beginning stages of being diagnosed with pancreatic cancer.

By Oct 2009 that diagnosis was determined to be stage 4.

He began chemo and an MRI in Jan 2010 revealed that the pancreatic head mass was essentially not visible.

By Thanksgiving of 2010 my dad was declared in remission; we enjoyed sharing a wonderfully thankful Thanksgiving holiday with him and his wife.

By the title of this post it's obvious the cancer is back.

He's been off chemo but has continued to have follow-up blood work over the past year.

Over the past few months the CA19 (cancer marker) number has been increasing. Once it went over 100 (I think normal is around 37) his doctor had my dad start chemo again.

A few months ago he had a scan to check the pancreas and it was still showing as being clear from any mass.

The CA19 continued to rise. The doctor felt like the chemo wasn't effective anymore and had him stop.

Another follow-up appt for a scan showed lesions on the liver. A biopsy was scheduled.

The results from the biopsy confirm that this is pancreatic cancer metastasized in the liver.

He'll be starting another type of chemo; one that was used in the 50s ... but if it's not showing any good progress he might start on a trial.

Today my dad walked in his 3rd Purple Stride Walk for Pancreatic Cancer. That's a miracle in itself considering his stage 4 diagnosis 2 years ago.

I'm once again asking for prayers for my dad ... prayers that he can beat this cancer yet again and walk in many more Purple Stride walks.

Cancer sucks.

My Own Pet Balloon/Canines For Disabled Kids

2011-11-12T22:30:00.001-05:00

Canines for Disabled Kids (CDK) is a non-profit organization based in MA. They help kids with disabilities gain independence and participate more fully in society through canine-assistance programs and resources.

Since 1998 CDK has sponsored over 130 assistance dogs; they have been able to increase the number of children being accepted for assistance dogs, and reduce the wait time for many of these children to between 3 months and 1 year, rather than 2 years or more.

Want to hear about a fun and unique way to donate CDK? Check out My Pet Balloon. This was created with the thought in mind of allowing children to simulate the child-pet experience - with a little imagination. My Pet Balloon come in a variety of animals from dinosaurs to ladybugs to ponies to pandas and everything in between. They are large, durable, helium-filled balloon animals, with legs and leash. Once filled they last a couple of weeks ... when they start to soften/deflate just bring them back to a store and ask to refresh the helium!

How does this help out CDK? Read this link to see the partnership between the two organizations. When you order a My Pet Balloon through this link then $5 will be donated directly to CDK. Win-win. A unique gift for your child and an automatic donation to a wonderful organization that helps kids with disabilities acquire service dogs.

21 Act Bills

2011-11-11T09:43:00.001-05:00

Just heard about another item to contact your state reps about! It is called the 21 Act bills and encompasses 2 bills to make up the 21 Act package.

From the NDSS: Senators Sherrod Brown (D-OH) and Susan Collins (R-ME) introduced two Down syndrome bipartisan research bills. Read their statement here.

These bills are the:

Trisomy 21 Research Centers of Excellence Act of 2011 (S. 1840)

Trisomy 21 Research Resource Act of 2011 (S. 1841)

Background Information on the Bills:
The 21 Research Resource Act will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank. These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research. This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders. This bill requires no additional funding from the government.

The 21 Research Centers Act will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure for translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million in annual funding to support the Centers of Excellence.

Follow this link to take action. So easy to just click on the email template and edit for your own personal information and then send it off to your state reps asking them to cosponsor these bills.

In other news ... remember the petition to make World Down Syndrome Day an official date on the UN calendar? It has passed!
"This afternoon, in the UN Headquarters in New York, during the plenary meeting of the Third Committee, the Brazilian proposal was read and adopted by consensus, with the co-sponsorship of over 80 countries." Yay for some recognition!

He Has Good Intentions

2011-11-10T13:48:00.000-05:00

Lucas brought the mail in the other day. Included in the mail was the Publix sale flyer. He grabbed a pen off the counter and took it, and the sale flyer, to the table.

He told me he was going to make my shopping list (ie circle items to buy).

I heard him say something about getting this cereal because it's gluten-free. I glanced over and saw it was Lucky Charms, which of course is not gluten-free. So I asked him why he thought that one was gluten-free. I love his answer. His heart is in the right place - always being concerned about Kayla and what she can and can't eat.

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Special Exposure Wednesday

2011-11-09T13:12:00.000-05:00

Jeans? Capris? Or ...? The story behind the picture:

The other day I ran upstairs to Kayla's room and grabbed her a pair of jeans. I went back to the living room and tossed them at her telling her to get dressed. She started to pull them on and kept saying she needed help. I was distracted, briefly glanced over at her, and told her she needed to unzip them first.

You know the pair of jeans you have that are just a little to snug for you, but you love them so you continue to wear them? The only way you can get them on is to wiggle, jiggle, jump, and tug to get them up over your hips?

Yeah, Kayla had a bit of that going on. But she persevered and got those jeans on.

Then she told me she needed help again; with snapping them. I pulled the jeans across her waist and wondered why they were so tight on her. I know she doesn't have a pair of jeans that are too small for her waist.

I glanced down and saw that these jeans fell above her ankles. I knew these weren't a pair of her capris either.

I looked at the tag on the back of the jeans and sure enough ... suspicion confirmed. The missing pair of jeans ... missing from LUCAS'S dresser!

Yes, these are a size 3T! She wears a 6 ... yet she somehow managed to get those jeans on!

I could not help but sit there and laugh at the sight of her wearing Lucas's 3T jeans! And I had been saying to Lucas over the past few weeks, "You are missing a pair of jeans. Where did that pair of jeans disappear to?"

Mystery solved.

Achieving A Better Life Experience Act

2011-11-08T22:34:00.000-05:00

A couple of weeks ago I posted about the importance of the Achieving A Better Life Experience (ABLE Act).

This act is being reintroduced in the US Senate and House on Nov 15th.

Please read the following information received from the National Down Syndrome Society:
I also encourage anyone/everyone to contact your Senators and Representative asking them to co-sponsor the ABLE Act ... even if you don't have a child with a disability. Even if you feel this doesn't affect you, please consider all of those families with disabilities who this does affect. I'd really like to be able to save for Kayla in much the same way we can for Lucas, without causing Kayla to lose any federal benefits.

The ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.
The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.
ACTION REQUIRED:
We need your help! We need you to call your two Senators and Representative (click here and input your zip code for your Members: http://capwiz.com/ndss/home/) and ask them to be an original cosponsor of the ABLE Act of 2011.
We’ve included a call script and all the information you need to make your phone calls.

Please click Take Action Now

***Should you have any questions or feedback you’d like to send us, please contact Sara Weir (sweir@ndss.org).

Whirpool Water Filter

2011-11-07T16:08:00.000-05:00

We've been using the Whirlpool Water Filter (that I previously reviewed here) for our refrigerator's water dispenser for several weeks now.

It still works great and we are still drinking fresh, filtered water! I love that my kids ask for water throughout the day when they are thirsty ... and can be more independent by filling up their own cup with water from the dispenser.

Whenever we leave the house and know we're going to be gone for any length of time, we always fill up the kids' reusable water bottles as well. Seems they always ask for water as soon as we're on our way driving somewhere! We fill up the water bottles and take them to the park, playground, ball games, sightseeing, and just for traveling.

I also use the filtered water dispenser whenever I make orange juice from concentrate, or if I need water for a recipe - such as soups, oatmeal, boiling water for vegetables or potatoes.

I like knowing that the water I'm using comes from a water filter that is certified by NSF International to reduce cysts, chlorine taste and odor, particulates (Class 1), lead, and mercury. These contaminants aren't necessarily in all users' water, but replacing the filter every 6 months ensures clean, safe drinking water.

Having fresh, clean, filtered water isn't something I take for granted!

“I wrote this review while participating in a campaign by Mom Central Consulting on behalf of Whirlpool and received product samples and a promotional item to thank me for taking the time to participate.”

Sometimes It Takes A Friend

2011-11-05T22:09:00.000-04:00

I feel like I've been trying to teach Kayla the fundamentals of swinging forever. Years, anyway.

I think she's been fully capable of swinging on her own, she just hasn't been interested or motivated. She much prefers to be pushed. Or if her feet can reach the ground she just likes to give herself a push off using the ground. But having someone push her is the best.

Once I've given her several pushes to get her going I'll swing next to her and try to show her how I'm pumping my legs and tell her to swing her legs in and out. She's just never put much effort in to it. She didn't seem to get the coordination of the rhythm you need to move your legs and the right timing to pumping them together, or the pendulum needed when you lean back and pull yourself forward.

So a few weeks ago she was swinging and I heard her say she was pumping her legs 'back and forth,' 'back and forth.' I looked over and saw her doing what I've been trying to show her all along. I saw her in perfect rhythmic motion pumping her legs, leaning back, getting momentum, propelling herself forward. Up until that moment I hadn't seen her swinging fluidly like that.

Of course I had to grab the video camera; it's what you do when your child finally reaches a milestone you've been working on! Then I asked her several questions to figure out just how she came to finally learn to swing herself. Turns out, a peer from class...a friend...was the motivating/helpful factor. Just listen to our conversation:

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West Farm Corn Maze

2011-11-03T22:40:00.001-04:00

A couple of weekends ago the kids and I went to the West Farm Corn Maze for some fall fun.

(Well wonder where my mind has been this week! I completely forgot that I posted these pictures last Wed for Special Exposure Wednesday! Oops!)

Special Exposure Wednesday

2011-11-02T13:37:00.000-04:00

The bride and the pirate:

Yes, I recycled Kayla's flower girl dress from my sister's wedding this summer for Halloween. Because what else where she wear it for? And she loves it. She loves to spin in it. So Halloween was easy ... just made her a bride :)

Shifting Perspectives

2011-11-01T21:08:00.002-04:00

Love this video. Powerful message. Inspiring. Absolutely beautiful.

Chromosomes

2011-10-31T22:46:00.000-04:00

I can't believe it's Oct 31 - already! Made it through another year of blogging for 31 for 21 and Raising Awareness ... one blog at a time.

This is a picture of chromosomes. Not just any chromosomes though. These are Kayla's chromosomes. This is Kayla's genetic make-up. These squiggly lines are what make Kayla ... Kayla.

23 chromosomes from me.
23 chromosomes from Joe.

...and then a little extra on the 21st chromosome.

Trisomy 21. Triplication of the 21st chromosome. Did the extra come from me (most likely), or Joe (possibly)? It doesn't really matter though because it's there.

And the rest of the chromosomes are from both Joe and me. Pieces of us that make up Kayla. More of the other chromosomes than the extra chromosome, yet that extra chromosome, small as it is, makes itself known in so many ways.

Psalm 139: 13-16
For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.

Is there anything more that needs to be said? She is fearfully and wonderfully made.
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The Shape of the Eye (book review/giveaway)

2011-10-30T21:31:00.001-04:00

Congrats to winner Becca!

I was asked if I wanted to review the book The Shape of the Eye by George Estreich. It is a memoir on "Down Syndrome, Family, and the Stories We Inherit." I had seen this mentioned on FB and a few blogs and put it on my "to-one-day-read" list. The review came at a great time - just in time for National Down Syndrome Awareness Month.

I enjoy reading other books of other parents' experience with raising a child with Down syndrome (and obviously one reason why I follow so many blogs!) It's nice to find out that you're not 'the only one' who felt a certain way, or dealt with things a certain way. Sometimes you feel like it's just you until you read someone else's story and it helps to validate your own feelings.

Sometimes other people can sum up your own complicated thoughts in a couple of sentences. When I read this in his book, "If Down syndrome were ordinary in the world, if a commonsense view of dignity and personhood and capability prevailed, then perhaps our early days would have been easier. But Down syndrome is not ordinary in the world." it reminded me of my post on Hope and Normalcy and in the end saying that maybe if Down syndrome happens so often, it must be a 'normal' part of the genetic make-up, and how different the delivery of the diagnosis would be if the world looked at it this way. "If Down syndrome was ordinary in the world." Yes, indeed. If only the world did look at it that way.

As in every personal story there are differences too; George's story of raising his daughter differs from mine in that his mother is Japanese. When Laura was born and the doctor mention Down syndrome and a few of the characteristics she had - such as the upward, almond-shaped eyes - George was able to explain that away as inheritance since his mother is Japanese. For me, the first time I looked at Kayla's eyes I knew she had Down syndrome because of those almond-shaped eyes.

I like his take on 2 of the most common stereotypes: that children with Ds are sweet, and that they are stubborn. He asks, "How can both be possible? If they are stubborn most of the time, or half the time, can they still be counted as sweet?"

While this memoir does describe Laura's birth, diagnosis, the aftermath, how they felt, how they came to accept it, how it became part of their lives ... it also goes deeper and beyond their own story of raising Laura. He explores how our attitudes about Down syndrome have come to be shaped by the descriptions and writings of John Langdon Down.

I enjoyed the personal family aspects of the memoir, but for me the most interesting chapter was the one on John Langdon Down. Mr. Estreich did a lot of research for his own knowledge after Laura was diagnosed, and for his book. I admit to not having done much research on the man. The only thing I really knew about him was he was the first person to describe individuals with Down syndrome and their characteristics ... and that is how it came to be named after him.

I knew that Dr Down described these individuals as "Mongolian" because the upward slant of the eye, but I didn't realize the history behind that. The whole chapter is very fascinating ... how Down tried to classify the people with Ds into a race category; that he couldn't comprehend how they were born to Caucasian families yet had "Mongolian" features - so he thought it had to be a degeneration in the womb. Initially he speculated it to be the cause of tuberculosis.

I know that people with Down syndrome existed long before it was described; and this fact is written so eloquently in the book, "...the children existed before they were discovered; what changed, after Down, was the way they were known....even though we have rejected the name he chose, the terms of his description are still with us."

One of the biggest revelations in this chapter, for me, was the fact that John Langdon Down had a grandson, also named John Langdon Down. This grandson was born after the elder John Down had passed away. This grandson was born with ... Down syndrome. I find that so ironic and fascinating. I keep thinking about that fact and wondering if anything would've changed with his view and descriptions of Ds if he had been alive to know his grandson. (Also, how have I been in the Ds 'world' for 8 years and never heard this tidbit before? I can't believe I haven't come across that until now!)

The Shape of the Eye is a poignant and wonderfully-written. It is a book that I think should be included on the list of books for new parents to read. I'd like to give my copy away to a reader ... just leave a comment on this post and mak sure I have a way to contact you if you're a winner.

*This isn't a requirement to enter ... but since it is DS Awareness Month and I've been blogging for 5 years now... I'd love it if you left a comment letting me know something you've learned about Down syndrome just from me sharing about my life with Kayla.

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Down Syndrome, College Experience, & Marriage

2011-10-29T23:23:00.002-04:00

There are so many programs for students with disabilities opening up in colleges all around the country. It makes me feel hopeful for Kayla's (and her peers) future. For opportunities that will be available to her.

Even though Kayla is only in elementary school I've been 'following' the College of Charleston's REACH Program since Joe received orders for Charleston.

A couple months ago there was article about students in the REACH program being able to reach their college dreams.

It was mostly a positive article, but there were some things I didn't realize. While this is a 4-yr program and the students attend academic classes, receive career counseling, have internships, get on-the-job training, and live in dorms with typical college students, they won't receive bachelor degrees; instead they'll receive certificates if they complete the program.

Despite not getting the bachelor degree I still thing it sounds like a wonderful program and great life experience. More doors will be open to these students for completing this program.

The problem is the cost of the program. It sounds like they are still paying the same cost as students who are getting their degrees. 16K for in-state residents (24K for out-of-state) and another 11K for room and board.

"Students from lower-income families are eligible for PELL Grants, some money is available from the Vocational Rehabilitation Department and a few scholarships are available. But students aren't eligible for lottery scholarships or student loans. The cost largely falls on families and leaves out many who could benefit from the program. "That's a tragedy," she said.

Last year, five students began the program, but two had to leave before the end of the school year because of financial problems. A third student couldn't afford to return this year."

So they have the same cost as typical students, and go through 4-yrs like typical students, yet they aren't eligible for lottery scholarships or student loans. How frustrating because that limits families who just can't afford it. Yet the benefits from it are almost priceless: "And students with disabilities who receive even one year of post-secondary education are twice as likely to be employed and earn 75 percent more than those who do not."

Then there is the story of Craig Blackwell, who has Down syndrome, and owns his own home. Yet, the frustrations I touched on in my Medicaid, SSI, SN Trust, Oh My! post ring true in his case.

Mr. Blackwell is engaged. He met his girlfriend at an NDSC convention 9 years ago and have been a couple ever since; engaged the last 4 years. He lives in Louisiana, she lives in Oklahoma. They both get their benefits through their state's programs. If she moves to his state she'll lose her benefits and the same if he moves to OK. It took him 14 years to get the waiver in Louisiana and if he moves he would have to start all over again.

The only thing he wants now is to marry his girlfriend and have a place to themselves. But for now they have a long-distance relationship with the help of the phone, Skype, and Facebook.

It just doesn't seem fair. He owns his own townhouse, but can't get married because if either of them move to a different state they'll lose needed benefits and have to start all over.

Things have to change for people with disabilities to be afforded the same life experiences as those without disabilities.

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Down Syndrome in the News

2011-10-28T16:58:00.000-04:00

There have been several news articles about Down syndrome over the past few weeks.

A few of the articles pertain to a new study that was recently released showing Parents, Siblings, and People With Down Syndrome Report Positive Experiences. More on this study: Down Syndrome's Rewards Touted as new Test Looms, Inspiring Portrait of Down Syndrome at Odds With Perfect Baby Pursuit, and Down Syndrome Awareness Makes A Difference.

Three surveys were conducted by doctors from Children's Hospital in Boston. The overall results "suggest the reality of Down syndrome is positive for a vast majority of parents, siblings and people with Down syndrome themselves."

Just over 2000 parents or guardians were surveyed and 79% reported that "their outlook on life was more positive because of their child with Down syndrome."

For me, the more important part of the survey results were from the adults themselves who have Down syndrome - "99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked."

People with Down syndrome do not suffer and live less-than desirable lives. They are happy with their lives and happy with who they are. Isn't that what we all want out of life?

In other news ... a Down Syndrome Consortium has been formed between the NIH and several Down syndrome groups. This sounds like positive and promising new since Down syndrome research is so underfunded by the NIH (less than .01 percent of its research budget). A focus of the consortium will be the implementation of the NIH Down syndrome research plan, which set research goals for Down syndrome, based on previous research accomplishments and the need for research in areas in which evidence is lacking. The consortium will meet two to three times a year.

An update on Punky (that I blogged about during last year's 31for21 challenge) - the first animated show featuring a character with Down syndrome; it has been picked up by Target Entertainment and they will be giving half of the earnings to Down Syndrome Education International. Punky is produced in Ireland and Target Entertainment will launch it internationally.

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Classroom Language Skills

2011-10-27T23:16:00.000-04:00

I highly recommend the book Classroom Language Skills for Children With Down Syndrome. I wish I would have read it before Kayla started school. I feel like it would've given me some ideas on what to ask for in the IEP meetings, or different things to try.

One of things that I found interesting mentioned having what your child is working on in ST correspond with what they are doing in the general ed curriculum. An example was if the science lesson is on tornadoes the vocabulary words would include spheres and cylinders. The ST should get the vocabulary words so the child can work on those words since it pertains to the lesson they're learning.

I know I'm not explaining it as well as it's described in the book, but it did make a lot of sense! Shortly after reading that is when Kayla brought home the study paper on the continents. I thought that was a great example of if the ST had this she could have been working on the articulation of the names of the continents with Kayla.

I checked this book out of the library but am ordering one for myself so I can read it more thoroughly and keep it for reference.

Another book that I'm getting a lot of ideas from is Teaching Math to People With Down Syndrome and Other Hands-On Learners. One section sounded like she was describing Kayla. It was kind of like an 'ah-ha' moment. "There is a pattern from 14-19 where you say the 'ones' first and then the 'teens.' This pattern is opposite from the pattern used in 21 and beyond. Some students will have difficulty writing down the teen numbers because they hear the digit in the ones place (such as four) before they hear the indicator for the tens (teen)... thus writing 41 for 14. Then 11, 12, and 13 don't fit any pattern. I have found most young students do not hear the sound "thir-" in thirteen as indicating 3."

Thirteen and fourteen are difficult for Kayla and for us to know if she is differentiating them. She can identify them written, but if she is counting out loud (not looking at or pointing to anything) her pronunciation of 13 and 14 are almost identical. And sometimes I think she thinks the number is the same when she says it. So it's hard to know if she is counting 13, 14, 15 when rote counting. I have also seen her write her teen numbers backwards and now I understand why she's doing it. She's hearing "four...teen" so she's writing the 4 first.

So lots of good reading in these books ... just wish I had started earlier!

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Special Exposure Wednesday

2011-10-26T18:57:00.001-04:00

Fun at the West Farm Corn Maze:

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Medicaid, SSI, SN Trust, Oh My!

2011-10-25T23:38:00.000-04:00

I will be the first to admit that I have a limited understanding of special needs trusts. I know this is something that we should have set up for Kayla already. We know we need to do this, we know it's important. We've done a little research and attended workshops. I still find it all very overwhelming and somewhat confusing.

The basics of what I understand are that special needs trusts are for individuals with disabilities to help ensure their needs are met. Most people with disabilities rely on some form of government assistance for health, care, housing, food (Medicaid/SSI).

The other basic fact that I've heard, but don't fully understand, is that 'you' (ie person w/disability) can't have more than $2000 in countable assets (even including having a vehicle that was given to them) at any one time. Well they can, but then the amount of benefits they are receiving will be reduced, or they can be disqualified altogether. I'm not sure how the $2000 works - if it's checked at the end of every month or what.

I understand that there has to be rules, regulations and guidelines to receiving benefits/assistance; I understand there should be a real need to use these services ... but to be limited to $2000? Really? That frustrates me. I'm frustrated for Kayla, and a bit pissed off about it too, to be honest.

We want our kids to be as independent as they can be, yet they are being held back by this $2000 limitation. What if Kayla gets a job making enough that she can have more than $2000, but not enough to really live off of without those benefits? It feels like it's set in place to not allow growth and independence.

This affects people with disabilities from getting married, because once they are married their assets are combined and then they lose some, or all, of their benefits.

We teach our kids about the value of a dollar and the importance of saving ... but now I'm supposed to tell Kayla to be careful of how much she saves so she doesn't go over that $2000 mark? Can you imagine not being allowed to save more than $2000?

We can't even leave anything to Kayla in her name, we have to make sure grandparents don't do so either. It has to be left in the name of the special needs trust. Can you imagine having children and being able to name one child as a beneficiary on different accounts but your other child can only be named as a beneficiary on the special needs trust? Kayla can't be listed as a beneficiary on any of Joe's military paperwork. Talk about exclusion.

One of the workshops I went to explained that special needs trusts generally cannot be used for food, clothing, or shelter (or that is when you'll start seeing a reduction in benefits/assistance). "The purpose of this trust is to enhance the beneficiary's enjoyment of life. Typical benefits include lessons, memberships, vacations, and traveling companions." You know what I took away from that? Special needs trusts are basically set up for 'fun money.' I'm sure that's not the intent, but it can't be used for food, clothing, or shelter ... so that's my interpretation.

There are a lot of ins and outs of setting up a special needs trust which is why you need to go to a lawyer who specializes in that; to make sure everything is set up correctly.

In 2009 the Achieving a Better Life Experience Act (ABLE Act) was introduced in the Senate and House of Representatives.

The ABLE Act is to allow individuals with disabilities and families to create tax advantaged savings accounts to meet their long-term ongoing support needs related to education, health care, employment, transportation and housing. S.493 and H.R.1205 would allow an account to be established by or on behalf of an individual with a disability. The income earned on amounts contributed to an ABLE Account is tax exempt. The assets held in an ABLE Account would not be counted for purposes of determining an individual's eligibility to qualify for Social Security, Medicaid or other public benefits.

A couple of bullet statements from the What is the ABLE Act and What Can it Do For You?

Assets held in ABLE Accounts are specifically excluded from the income and assets tests used to determine eligibility. This includes the current SSI eligibility requirements that prohibit beneficiaries from having over $2000 in assets at any one time.

Individuals with disabilities are discourages from participating in meaningful work, because for the most part, can't save earnings above their asset limits.

Families are discouraged from providing financial support because it may cause individual with disability to be disqualified from Medicaid/SSI.

Individuals with disabilities who don't have a special needs trust must spend those assets they acquire, such as small inheritance, or wages, in order to remain qualified for Medicaid/SSI.

The links on there have a lot of great information on what this can mean for people with disabilities and their families.

I feel there is a tremendous need for something like the ABLE Act to allow our loved ones with disabilities more opportunities to save money (just like any of us) and live more independently... to be afforded the same opportunities that everyone else has.

I hope by the time Kayla reaches adulthood something like this is in place. Contact your state representatives and encourage them to support the ABLE Act.

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Dr Mobley on Health Matters

2011-10-24T22:52:00.000-04:00

A very informative interview with Dr William Mobley, MD, Chair of Neurosciences at UC San Diego. He discusses how discoveries in one area of medicine often has wider applications. He describes his transformative work with Down syndrome and the impact it may have on treatment of other diseases like Alzheimer's.

I had my volume turned all the way up and still found it a little difficult to hear everything, but I do like what he had to say regarding his research and the potential for many great things to come. He talks about genes, neurotransmitters, the brain, Alzheimer's and his hope for the future of those with Down syndrome.

Dr Mobley says that he has this dream that a doctor goes in to the appointment with a future mom-and-dad-to-be and they've just been given the diagnosis of Down syndrome. And I want the doctor to say I know there's some concern because you've heard a lot about Down syndrome, but I just want to let you know medical science has made so many exciting discoveries in the last many years, so here's what I'd like to tell you. Your child will be born well, they will not have heart disease, they will leave the hospital on time, they will grow and develop, go to school with other kids, finish grade school, high school, go to college. They'll get a job, drive a car, get married, and you'll never have to worry about Alzheimer's disease again.

I feel like there is so much untapped potential in people with Down syndrome, and research by caring doctors like Dr Mobley are on the cusp of bringing it all out.

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The Wonder of a Toddler

2011-10-23T22:13:00.001-04:00

In my guest blog post on Parents.com Having a Child With Down Syndrome: What Nobody Tells You, I write that eight years ago I wouldn't have known that October was National Down Syndrome Awareness Month. I'm fully aware that the only reason I know this now is because I have a child with Down syndrome. I think it's safe to say, that if Kayla was born with 46 chromosomes I don't think that eight years later I would know this was Down Syndrome Awareness Month.

Because why would I? It wouldn't have impacted my life. It's not something you hear mentioned in the public. Outside of the "Down syndrome circles" does anyone talk about it? I guess it's possible, like some of you who read my blog and don't have a child with Ds, I might have still started a blog, and I might have come across a blogger who has a child with Ds, and maybe followed that blogger, and maybe I would have been aware, who knows.

I guess bit by bit the word is getting out there. All of the bloggers who are participating in 31 for 21 have readers who aren't directly impacted by having a child with Ds so they are becoming aware. Word is being spread in social media.

Then I came across the article Down Syndrome Awareness Month Opens My Eyes As a Parent. I realized it was written by a parent who doesn't have a child with Down syndrome and doesn't seem to have any connection to Ds at all ... just somehow became aware about October being DS Awareness Month.

She mentions watching video clips of the National Down Syndrome Congress We're More Alike Than Different campaign and said that they are getting their message across.

I thought, "Great!"

She went on to say that the campaign features young adults telling their stories and what she realized was that they love life. "They love their lives."

I thought, "Great!" again. I thought someone is getting the message that people with Ds are their own unique individuals with hopes and dreams and lives like everyone else.

But then. Then she said, "These earnest souls never lose the ability to be amazed; instead, they somehow retain the wonder of a toddler just discovering the world." And the bit about 'retain the wonder of a toddler' was italicized in the article. To emphasize it. To draw attention to it. To make it the main point of her opinion after watching the video.

If it wasn't italicized in the article I was going to do so in my blog post because that's the phrase I want to draw attention to as well.

In the paragraph above she mentions the videos are of young adults. Young adults telling their stories. Something about the phrase "wonder of a toddler" rubbed me the wrong way. These are young adults. The message is "more alike than different."

Yes, maybe some/most people with Down syndrome do have a more ... innocent (? Is that even the right word?) view of the world. Maybe they do have a more positive outlook? Maybe they do appreciate life more? Maybe they 'get' something that most of us don't? Maybe they know something we don't?

But they still deserve the respect of being treated like the young adults they are. They don't need to be described as having the wonder of a toddler. Maybe they just have the wonder of life. Of living life. Of loving life. Of exploring life. But not the wonder of a toddler.

I remember when Kayla was very young and frequently hearing things like "you get to enjoy her being a baby longer" and it would make me cringe. Inside I would think, "No! She is not going to be a baby longer. She's going to grow and develop at her own pace, but we will treat her as age-appropriately as we can." She might have delays, she might not be doing all the things kids her age are doing, but we are not going to baby her.

I just feel like this description patronizes these young adults into something less than what they are.

It doesn't give them credit for reaching adulthood.

It doesn't give them credit for being "the college student with dreams of singing on American Idol to the teacher's assistant who likes to dance and "get his groove on" to the exercise enthusiast ..."

I'm glad she has a new outlook on Down syndrome. She does say, "How dare I look at these families and assume their lives are more difficult than anything else? Maybe automatically "feeling sorry" for Down syndrome families is an insult of sorts. Who am I to say that their differences equal nothing but disadvantage?"

But I wish the whole message she got was that they are just people. Just people with an extra chromosome who deserve the same amount of respect.

Or am I the only one who was disappointed in the "wonder of a toddler" comparison?

ETA: Thanks for the comments so far! Appreciate your thoughts on this as well. I admit I probably was a bit overly sensitive when I read that and took offense to it! I felt it perpetuated yet another stereotype - that people with Ds are always, or will always be, 'child-like.' And by continuing to have that mentality about people w/Ds it makes it hard to make any progress with the impression society in general has on individuals with Ds.

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Update on Beautiful Eyes Contest

2011-10-22T17:04:00.000-04:00

Remember the picture I submitted of Kayla for the Prevent Blindness America's Most Beautiful Eyes Contest? The public voting period ending on Sep 30th. The top winners from each state were named and Kayla won for the state of SC!

Now the next round will be determined by a panel of judges selected by Prevent Blindness America. They will chose 5 from all the state winners ... then a panel of 3 celebrity judges will narrow those 5 down to the top 3. Winners will be announced Nov 19.

Our local paper did a nice write up of Kayla being the state winner: The Eyes Have it for Local Girl.

And she is even at the top of the front page on the hard copy edition of the paper (I wasn't expecting that!):

You can see a list of all the state winners here.

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Blog Hop for Down Syndrome

2011-10-21T09:41:00.000-04:00

Crazy Beautiful Love is hosting a Blog Hop for Down Syndrome ... today ...Oct 21. Because as you all probably know by now, Down syndrome is also known as Trisomy 21 because of the extra copy of the 21st chromosome.

If you're visiting my blog for the first time - hello!! and welcome. I'm Michelle, and I'm married to the military. The Air Force to be exact. By way of my husband Joe! I have 2 kids. Kayla is 8 and she is the reason I'm raising awareness for Down syndrome (she also has Celiac Disease). Lucas is 3 and is already becoming a very caring and concerned brother! When they are playing in their pretend kitchen with play food Lucas tells Kayla she can have "this pizza because its gluten-free", but she can't have his because "it has wheat." Love watching their relationship develop!

Check out my post just below this one to discover some of the "perks" of having a child with Down syndrome!

Now to get to hopping to check out some new blogs!

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The Perks of Down Syndrome

2011-10-20T14:16:00.002-04:00

Whether you find out pre-natally or post-natally that your baby has Down syndrome the first things you will be told are all from a clinical/medical standpoint. Most likely it'll be a doctor or geneticist who will talk to you about what Down syndrome "means" and then you'll probably get on the internet when you get home and research, research, research. Most of the information will still be of a clinical/medical variety.

You'll be told about the characteristics, delays, and potential medical issues.

Your baby will probably be described like this:
- the most common type of genetic defect/disorder
- chromosomal abnormality
- low muscle/tone (described as 'floppy')
- low set ears, some ears have a fold
- curved pinkies
- facial abnormalities
- small mouth
- tongue protrusion
- high palate
- flat nasal bridge
- flat back of the head
- small nasal passages
- upward slant of the eyes
- epicanthal folds
- small/short/stubby fingers
- extra space between first/second toes (sandal gap)
- teeth may come in late and out of order
- teeth may be small, unusual shape, out of place, missing, razor-sharp
- chest might be funnel shaped or pigeon breasted
- short in height

Potential Medical Problems/Other Issues
- slow to gain weight
- trouble breastfeeding
- hearing loss
- vision problems
- developmental delays in gross/fine motor, speech, cognition
- intellectual disability (or mental r*tardation)
- potential for obesity
- early onset of dementia or Alzheimer's disease
- shorter life span
- various congenital heart defects
- feeding issues
- gastrointestinal problems (duodenal atresia, imperforate anus, pyloric stenosis, tracheo-esophageal fistual, Hirschprung's disease)
- increased chance for having Celiac disease
- increased chance for having leukemia
- respiratory problems
- sleep apnea
- thyroid problems
- atlantoaxial instability
- seizures

Whew! That's a lot of information to take in all at once about your baby ... a baby whom you haven't even had the chance to get to know yet.

Please remember every child with Down syndrome is not going to have everything on those lists either.

But can you imagine leaving the hospital, or doctor's office, with all that info? It all sounds so very depressing and negative doesn't it?

What if, in addition to all the clinical/medical descriptions of Down syndrome they also give you another list?

What if someone actually said ... "Having said all that ... there are actually some PERKS to having Down syndrome! Yes, perks!"

What are some of these perks? (Many of these apply to special needs in general, not just specific to Down syndrome. Some of these are tongue-in-cheek as well.) And I don't mean the typical perks you hear about 'life lessons learned' such as learning to be more patient, unconditional love, your child will teach you so much ... not those kind of perks.

Perks of having a child with Down syndrome (or special needs)

- You learn how to speak in a whole new language; the language of acronyms. DS, T21, IFSP, IEP, OT, PT, ST, DT, DD, ID, AFO, AAI, NDSS, NDSC, NADS, LRE, NCLB, FAPE
- You might learn sign language; which you may, or may not, have done if your child didn't have Ds.
- You'll have a whole team working together to create an IFSP just for your child. Your child will have individual attention and 'fun' therapies to work on development.
- This will later turn in to a whole team of people working together on your child's IEP. They get to have all these people concerned about their education and making sure they are getting what they need to succeed in school.
- People are more apt to forgive your child's behavior because, hey! They have Ds and don't know any better!
- When you visit Disney and other amusement parks you can get a special needs pass and you won't have to wait in the long lines for all of the rides (How come they don't tell you THAT in the hospital?!)
- Your child can get the The National Parks Access Pass - a free lifetime pass that allows entry to recreation sites managed by 5 federal agencies (and allows free entry for all those in the same vehicle, or up to 3 adults on per-person entry fees.)
- There are churches that provide free respite care for kids w/special needs and their siblings
- You might find places that offer free times for families w/special needs (for us locally there is the Children's Museum of the Lowcountry that once a month opens 2 hrs early for free for families w/special needs only; Monkey Joe's has a similar program as well.)
- You will have a new appreciation for what it takes to reach all those wonderful milestones.
- Your child has a day that is internationally recognized as World Down Syndrome Day (Mar 21)
- There is a whole month devoted to awareness of Down syndrome (Oct!)
- There are awareness walks that happen all across the country just for Down syndrome!
- There are local and national support groups for Down syndrome.
- You can attend national conventions about Down syndrome which end up feeling like a big family reunion.
- You will join a secret club. You'll see other families with a child with Ds and you'll make eye contact, smile, and discover the instant connection.
- You will discover a whole new community; online and 'in-person.' People whose paths you probably wouldn't have crossed otherwise will become your closest friends.

Added from comments:
- apply for the Katie Beckett Medicaid Waiver to get financial help for any medical or therapy needs
- better than all of these are the hugs

Please feel free to add to this list by leaving a comment on any other 'perks' to having a child with Down syndrome/special needs!

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Special Exposure Wednesday

2011-10-19T13:29:00.000-04:00

And a couple of Lucas ...

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Early Stage Clinical Trial In Down Syndrome

2011-10-18T16:14:00.000-04:00

Last month Roche announced the "initiation of its first Phase 1 clinical trial to investigate the safety and tolerability of a molecule designed to address the cognitive and behavioral deficits associated with Down syndrome."

This new clinical trial, the first of its kind, targets adults age 18-30.

I think it is exciting that clinical trials for Down syndrome are now being thought of as worthwhile and something to look in to.

It'll be interesting to see the results of this study and what this could mean in the future for individuals with Down syndrome.

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Retake or Not?

2011-10-17T13:26:00.000-04:00

Here is Kayla's school picture. For the most part I don't mind this picture too much. I do wish she were looking AT the camera. She seems to have a bad habit of doing that lately - looking down instead of at the person taking her picture.

So I'm not sure what to do about the pictures .. take a chance and have them retake it? Or just keep these as is?

Thoughts?

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New Apps from Down Syndrome Education

2011-10-16T14:00:00.000-04:00

Down Syndrome Education International and Down Syndrome Education US are full of great resources, research, and articles about kids with Down syndrome. There are usually presenters at the NDSC annual conference and DSE also has seminars/workshops throughout the states and overseas.

Here is an article on new apps being released to help with early development. They are geared towards supporting language, memory, and number skills.

Special Words is based off of DSE's successful See and Learn Reading and Language Program.

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Kardz By Kenz

2011-10-15T21:21:00.000-04:00

Kardz By Kenz is a website featuring McKenzie Howard's colorful artwork turned in to greeting cards. She is 19 and has Down syndrome (and is local to me in the Charleston area!)

For each packet (includes 5 different designs) sold McKenzie also donates a portion of her earnings to a favorite charity. She has supported the Down Syndrome Association of the Lowcountry, Camp Victory Junction, and National Down Syndrome Society.

There is also a map showing the different states where her cards have been shipped to. She has 32 so far (and 2 countries) - maybe someone out there lives in a state that she hasn't sold to yet!

Here is a great article about her in the Post and Courier highlighting Young Entrepreneurs.

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Fresh, Filtered Water

2011-10-14T13:34:00.001-04:00

When we bought our house last year the only appliance we bought was as refrigerator. Living in base housing or an apartment pretty much all my life I never had to buy a fridge before. I was always stuck with the standard issue basic model.

Oh the choices! I wanted double-doors for the fridge with the freezer drawer on the bottom and a water/ice dispenser on the outside of the drawer (so we could finally free up room in the fridge by not having the big filtered pitcher we were using.)

We're big water drinkers so having the dispenser easily accessible for the kids to get their own water throughout the day was a big plus.

A few months ago Mom Central was looking for bloggers to review a water filter for owners of Whirlpool refrigerators. We have a Whirlpool and it was time to change out our water filter; so I signed up.

We knew our water filter was at the end of its life cycle because the water was coming out in a slow trickle. It was obvious that it was taking longer to fill up our cups, water bottles, and pitchers.

Thank goodness when our new water filter arrived! It was easy to pop the old one out and put the new one in - and boy what a difference. The water came out fast and I could tell a subtle difference in the taste ... almost more ... refreshing. It had definitely been time to switch out the water filter.

The water filter is certified by NSF International to reduce cysts, chlorine taste and odor, particulates (Class 1), lead, and mercury. These contaminants aren't necessarily in all users' water, but replacing the filter every 6 months ensures clean, safe drinking water.

“I wrote this review while participating in a campaign by Mom Central Consulting on behalf of Whirlpool and received product samples and a promotional item to thank me for taking the time to participate.”

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Lesson Learned

2011-10-13T12:24:00.000-04:00

Lucas and Kayla were playing a game on Wii Fit Plus ... it was the one where you basically just run in place. Lucas wanted Kayla to run with him so it was on the 2-player option.

They finished the 'race' and Lucas excitedly yelled, "I win first!"

Kayla, just as excited, yelled, "I win second!"

Then Joe told Kayla that she was right, she finished second. Kayla doesn't always use the terms first, second, third ... so I think he was confirming for her 'second.'

Kayla was just as happy about it as Lucas was so she pumped her fist in the air and very happily yelled, "YES!"

She didn't finish in second place, or in this case, also 'last', she didn't place second; she didn't come in second, she won second.

Isn't that a better way of looking at things? Winning first, second, third etc? You won that place so claim it! Own it!

It doesn't matter that this was a running-in-place, not really a competition, playing a Wii game with her brother kind of race.

The lesson learned is tt doesn't matter what place you finish. What matters is that you cross the finish line ... and you cross it with an emphatic YES!

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Special Exposure Wednesday

2011-10-12T13:17:00.000-04:00

Kayla is being featured at 5 Minutes for Special Needs Special Exposure Wednesday for Down Syndrome Awareness Month.

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MaterniT21

2011-10-11T16:15:00.000-04:00

One of the workshops I attended at the NDSC Convention was about prenatal testing. Prior to the workshop I had already read about a non-invasive prenatal test for Down syndrome.

At the workshop is where I learned that Sequenom The Center for Molecular Medicine is calling their new maternal blood test MaterniT21. Isn't that cute? (insert heavy sarcasm). At least there is no beating around the bush and hiding the fact of what they are truly targeting.

The new prenatal test will detect nucleic acid of the unborn baby that circulates in the blood of its mother. So they will be able to use the mother's blood to detect Down syndrome. This can be done as early as 9 weeks. The non-invasive test is diagnostic; it isn't a screening test. It's non-invasive unlike CVS and amnio which carries the risk of a miscarriage.

I'm all for progress and I can, to some extent, understand the excitement surrounding a non-invasive diagnostic test. But I can't help but think how much easier this will be to terminate a pregnancy and how many less children like my daughter will be born.

The problem is what information parents are given after a prenatal diagnosis. This was on a slide from the workshop, "Most Genetic Counselors appreciate that people with Ds can have friendships, hold jobs and go to school. Paradoxically, by self report, very few of the counselors point out these abilities in their descriptions of Ds to prenatal clients." And then this, "86% mentioned termination, 37% continuation of pregnancy, and 13% adoption." Hmm... all three options should be given and discussed to make an informed decision.

There is a new booklet being distributed to medical professionals called Understanding a Down Syndrome Diagnosis & Presenting a Down Syndrome Diagnosis. Hopefully this will find its way into every OB and/or genetic counselor's offices to help facilitate a full and complete discussion on the diagnosis and what it means.

A great resource for anyone receiving a prenatal diagnosis of Down syndrome, and choosing to continue with their pregnancy, is the free downloadable ebook Diagnosis To Delivery: A Pregnant Mother's Guide To Down Syndrome."

I'm all for progress but why can't that progress (money/research) be geared towards helping those with Down syndrome who make it in to this world instead of trying to stop them from ever being born?

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The Lucas Association Shirt

2011-10-10T15:30:00.001-04:00

While we were at the NDSC Convention in San Antonio this summer my mom bought the kids a couple of tshirts. The tshirts say "I (heart) DS." There were also tshirts that said, "My (blank) has DS."

At the table where the shirts were being sold they also had markers and such if you wanted to decorate your shirt (or for writing in the (blank) spot on the other shirt. So they kids wrote their names on their shirts.

After Lucas wrote his name he decided to keep writing. He picked up a different colored marker than what he wrote his name in and he wrote the letters A S S ... and then he just stopped. He was done. So his shirt said Lucas Ass.

My mom said she couldn't let him walk around with that on his shirt, so with some quick on-the-spot thinking she added some more letters to his shirt and Lucas Ass became Lucas Association.

And that is the story behind his Lucas Association shirt!

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More Alike Than Different

2011-10-09T21:20:00.000-04:00

Video from the National Down Syndrome Congress of individuals with Down syndrome talking about their pretty typical life.

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FyrFlyz Review & Giveaway

2011-10-08T14:19:00.002-04:00

Via Random.org the winner is Clenna. Congrats!

Have you heard of FyrFlyz yet? I hadn't until I received a review opportunity from Mom Select, but it's quickly becoming the latest toy craze.

FyrFlyz are spinning light shows that you create with your hands. They are small toys with lights attached to each end. Strings are attached to each end and you hold the handle in each finger and spin it to create rays of streaming light.

One night when the sun went down I brought these out as a surprise for the kids and they were a big hit. Although when I first started spinning it I thought I was going to hit myself in the face (but I didn't)! Just make sure you keep your arms stretched out in front of you and hold your head back.

Last night we took a 'night time flashlight' walk. They kids had their flashlights and my sister and I had the FyrFlyz spinning the whole way. I have to say it was a bit addictive and gave me a bit of an arm work out as well! What a fun way to exercise your arms!

I attempted to take a video of the kids using then, but it didn't come out well at all - so check out these videos instead - you'll see exactly how these toys works and the neat light shows that are created!

This toy was recently awarded the The Oppenheim Toy Porfolio Award and has been nominated for Time To Play's People's Play Award.

I'm thinking these will make great stocking stuffers!

If you'd like to win your own FyrFlyz and see what all the buzz is about, please leave a comment on this post. Let me know if you've heard of this new toy before and make sure I have a way to contact you if you're the winner!

Disclosure: I received the product to facilitate my review and giveaway thanks to FyrFlyz and Mom Select.

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Adoptions and Institutions

2011-10-07T13:41:00.000-04:00

There are so many children listed on Reece's Rainbow waiting to be adopted that it's hard to pick any one child out to bring attention to. I frequently check the site to see which kids have moved to the "My Family Found Me" page and to catch up on the families to see where they are in their process of adopting.

A couple of my blogging friends have heavy hearts for certain children and are drawing attention to their plights by having a fundraiser/giveaway to advocate for each of their adoptions. They are hoping to raise the funds in their respective accounts so money won't be an issue for a family wanting to adopt either of these boys.

Please check out Patti's blog post on Artem (facing transfer to an institution), and April's post about Bogden.

Then I read Shelley's post about the institution. Shelley and her husband are in the process of adopting their 4th child with Down syndrome from Eastern Europe; and their 2nd child from the same institution. Most of the stories about the institutions aren't the best of stories - the children are neglected badly and don't receive attention or love, or any toys to stimulate their minds.

At this particular institution they are blessed with a director who actually cares about the children and has their best interest in mind. She uses the small budget she receives to make sure the kids are transported out of town and back for medical appointments, she advocates for the children to attend the local schools. She uses the money in her budget for the children so what has been neglected is their building. Rooms are in desperate need of repair.

There is a room in their building that would be perfect for a large playroom, but it is currently not safe for the children. It is estimated that it would cost about $500 to make that room safe for the children ... especially the bedridden children who would need to be down on the floor. There are a few other rooms that need some repair work as well. After I read Shelley's post I wanted to write a check for $500 so those kids could have a decent playroom! Sigh ... instead I will give what I can, and help Shelley, Patti, and April spread the word about what is heavy on their hearts.

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Nobody Told Me

2011-10-06T08:48:00.000-04:00

My 31 for 21 post today is over on the Parents.com blog. The lovely Ellen from Love That Max also writes a blog, To The Max, for Parents.com and asked if I would submit a post for Down Syndrome Awareness Month.

Head on over to to see what I had to say on Having A Child With Down Syndrome: What Nobody Tells You.

Ps ... while you're over there, just a reminder that my blog is also nominated in the category for Special Needs Blog, appreciate any votes!

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Special Exposure Wednesday

2011-10-05T13:23:00.000-04:00

Kayla called herself 'safe' as she crossed home plate!

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The Continents

2011-10-04T13:44:00.000-04:00

Last Monday I went to Kayla's school to have a conversation about a few issues an concerns. As we were talking about how Kayla was doing with her time in the typical classroom her teacher pulled a paper out of Kayla's folder that was going home with her that day. It was a paper with the 7 continents and the note said there was going to be a quiz on Wed.

Mrs. H. said they way they were planning to modify the quiz was to have the names of the continents on small strips of paper. The teacher would point at one of the continents and give Kayla a choice of 2 strips and she had to say and point to the strip with the name of the continent for her answer.

On our way home from school that day I asked Kayla, "So you're learning about the continents in Ms C.'s room?" She confirmed she was. So I prodded her by saying something like, "So you're learning about North Am...." and she finished "North America!" I did the same with South America. I admit to being surprised when she said, "Europe, Asia" on her own. She might not be able to show me on a map where they all were, but at least she was retaining some information - the names of the continents. It still surprises me when I realize that she is actually paying some attention to what is being taught! :)

I haven't had a chance to talk to her teacher since the quiz was given to find out if that is indeed how they gave her the quiz. If it is, I realize that yes, Kayla would have a 50% chance of getting each continent right. But she would also have a 50% chance of getting each one wrong. Or she could get half of them wrong. There are a number of possibilities with 7 continents, even though she was given 2 choices.

Knowing all that, I was beyond excited when she brought this paper home. So proud of my girl!

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Buddy Walk Recap

2011-10-03T15:47:00.001-04:00

Yesterday we went to the Down Syndrome Association of the Lowcountry's Annual Buddy Walk and had a great time! Couldn't have asked for better weather - beautiful blue sky with a high of low 70s. It was a great day of coming together to celebrate our loved ones with Down syndrome.

My dad and his wife drove up from Florida, a friend of mine and Joe's from high school (in Germany) drove over from Columbia with her 2 kids, and Kayla's 1st grade teacher from last year came to the walk with her fiance. We also walked with a few families we have become friends with locally. The Woodrum Family have 3 boys, their youngest, Nate, has Down syndrome and also attends the same school as Kayla. One of Kayla's teammates from Miracle League, who has Down syndrome, and her mom were there. And the Kirkland Family, a fellow military family who adopted two kids w/Ds from Ukraine last year.

Kayla and Maya

Sno cone and grandpa

and sharing the sno cone!

Kayla's teacher from last year

The best way to participate in a Buddy Walk

And of course Kayla wanted a piggy back ride too!

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Expectations

2011-10-02T10:48:00.001-04:00

A couple weeks ago I saw this quote on Shelley's FB page. She got the quote from the Down Syndrome Ireland Group and it is from a parent who has a teenager with Down syndrome.

"Sometimes our children with Down syndrome are more disabled by the low expectations of those around them than they are by the condition itself."

I love this quote. How simple, yet profound, and powerful.

I think about years ago when babies with Down syndrome were automatically placed in institutions because of low expectations. Because parents were told they would be better off there.

If you have low expectations and don't challenge a child, if you don't expose a child to learning opportunities, then how indeed are they supposed to learn? So of course the misconception was continually perpetuated that those with Down syndrome couldn't learn, couldn't amount to anything, couldn't do anything ... because they were placed in institutions and not afforded the opportunity to learn.

This quote is also a reminder to myself that "those around them" can also refer to parents. Myself. Sometimes I am guilty of thinking something is beyond Kayla's comprehension, or too hard for her to do. Sometimes I rush her along and just do it myself instead of taking the time to show her or allow her to try for herself.

Sometimes I need the reminder to slow down and give Kayla the opportunities to learn.

Sometimes I need the reminder to allow her to spread her wings and become more independent and realize that everything will be ok.

Sometimes I need the reminder to keep the bar raised on my expectations on what Kayla can and will do.

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One Of Them Is Kayla

2011-10-01T15:36:00.002-04:00

It's October! Which means, among other things, that it is Down Syndrome Awareness Month. As I mentioned a couple days ago, I'm participating in the 31 for 21 Blog Challenge to raise awareness about Down syndrome.

Today's post is brought to you by Plus15's "One Of Them Is Me Campaign." A beautiful photo montage of individuals with Down syndrome. Look quickly - Kayla is the second picture in!

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Friday Freebie

2011-09-30T15:03:00.000-04:00

- Print out this coupon from Staples to get a free ream of paper via rebate. Exp Oct 1.
- Free Scary Face Pancake from IHOP on Fri, Oct 29. 1 per child 12 and younger.
- Get a free $2 in Amazon MP3 credit by entering code fallmp3s (case sensitive) here.
- Get a $10 credit when you sign up at Save More. Today's deal is a reusable, BPA-free, collapsible water-bottle for $5 plus free shipping.

5th Annual 31 for 21 Blog Challenge

2011-09-29T15:08:00.000-04:00

Tricia from Unringing the Bell is once again hosting her annual 31 for 21 Blog Challenge for Down Syndrome Awareness Month.

For those that aren't 'aware' - October is Down Syndrome Awareness Month. Down syndrome is a 3rd copy of the 21st chromosome (a trisomy), so in medical terms it is called Trisomy 21. Or T21.

The challenge is to blog every day in October (31) for Down syndrome T(21). Hence 31 for 21 blog challenge.

The challenge isn't to blog every day ABOUT Down syndrome, but just to post every day. You don't have to be a parent of someone with Down syndrome to participate either ... any one can sign up, post the badge (should be available on Sat) on their blog, inform their audience what it is all about, and post away about any topic.

I have no idea what I'm going to post about for 31 days, but I've done it for the past 4 years so I'm not going to stop now.

31 for 21 - here we come!

Special Exposure Wednesday

2011-09-28T10:23:00.000-04:00

The fall season of the Summerville Miracle League has begun!

Learn A Ton When School Is Fun Giveaway

2011-09-26T23:05:00.000-04:00

One of the easiest ways to support your child's school is by cutting out the Box Tops for Education logo you see on numerous grocery products and sending them in to the school. (Kayla eats a lot of Chex cereal and Lucas and Joe eat a lot of Cheerios, so I'm always clipping those logos!).

Totino's realizes that there is a direct connection between having fun in school and a better academic performance. So this school year they are giving away 1 million Bonus Box Tops (which = $100,000) to help bring fun ideas to life inside and outside the classroom through the Learn A Ton When School Is Fun sweepstakes.

Four participating schools will win 250,000 Bonus Box Tops = $25,000 from Totino's to help fund a fun project at their school. (Enter daily to win!)

Totino's Pizza Rolls and Party Pizza will feature double box tops to help you earn even more for your child's school.

Here are some tips from Gerald Richards, CEO of the non-profit 826 National which focuses on collaboration and creativity in the learning process:

- Creativity is a classroom staple. Encourage creativity in every area, including writing, drawing and in subjects like science. Kids need to know that there’s not always a right answer; sometimes, education is subjective and experimental.

· Learning can take place outside school walls, too – field trips are a great way to make learning fun. Venturing beyond school boundaries for a hands-on approach excites students and can help spark, or reinvigorate, a passion for learning. Teachers can even consider taking “mini” field trips to the school library or auditorium for a change of scenery and a new lesson.

· Time outdoors, be it for recess or after school activities, allows kids to explore the world beyond the classroom and is often the place where lifelong lessons are learned. Taking a break outdoors during the school day – even if it’s just having lunch outside – allows youth to recharge and has been shown to help enhance concentration and learning in the classroom.

· Through programs like Box Tops for Education (BTFE) and the Totino’s “Learn a Ton When School is Fun” sweepstakes – which will award four schools across the country with 250,000 Bonus Box Tops, the equivalent of $25,000 – parents and teachers can help bring fun projects to life that otherwise might not be possible due to resource and funding limitations.

Totino's has provided a "Learn A Ton When School Is Fun" prize pack to give away on my blog. The prize pack includes coupons for free Totino's products, Brain Quest Smart Game, Micro Rubik's Cube key holder, and a drawstring back pack.

To enter to win the prize pack just leave your name, making sure I have a way to contact you if you're the winner.

"Disclosure: The information and prize pack has been provided by Totino´s through MyBlogSpark."

Friday Freebie

2011-09-23T15:51:00.001-04:00

- Get a free sample of Emergen-C Kidz.
- Request a free America's Byways Map.
- Order, or download, a free Land O Lakes Holiday Recipe Brochure; you can also download a free Gluten-free PDF edition!
- On September 29^th, 7-Eleven will celebrate their caffeinated version of National Coffee Day, CofFREE Day, by offering everyone in the United States and Canada a FREE medium-size cup of hot coffee (or cappuccino…or latte) from 7AM to 11AM.

Special Needs Blog

2011-09-22T13:32:00.000-04:00

My blog is a nominee for a blog award on Parents.com website under the category of Special Needs Blog.

Not sure how many readers I have left anymore ;-) but sure would appreciate any votes, if you don't mind.

By Best Special Needs Blog

Thank you!

Special Exposure Wednesday

2011-09-21T13:07:00.000-04:00

The Hellmann's Chicken Challenge

2011-09-20T14:09:00.000-04:00

Chicken breast and tenderloins are a staple in our house and I admit I usually end up sticking with the 'tried and true' and 'quick and easy.' (Although I do have drumsticks in the slow cooker right now!)

Hellmann's is on a mission to change up the dinner menu monotony and I'm looking forward to getting out of the recipe rut and trying some new meals. Hellmann's and Best Foods mayonnaise have launched the first-ever Chicken Challenge - a series of head-to-head chicken dish challenges to help diversify weekly menu planning.

Each week 2 recipes will go up against one of the most popular recipes on Hellmann's - Parmesan Crusted Chicken. Try one of the recipes each week and cast your vote for your favorite. I think the first recipe I'm going to try is the Chipotle Lime Chicken (although the Parmesan Crusted Chicken is still in the lead!)

While you're there checking out the newest recipes and voting, you can also enter a weekly sweepstakes for a chance to win one of 4 $250 grocery gift cards. And... if there are more than 10,000 entries the value of the cards will double to $500!

"Disclosure: I was entered for a chance to win a Hellmann's® prize package in exchange for this post. No monetary exchange took place. All opinions are my own."