The Upside of Downs

My daughter is a Rebel

2011-11-06T21:24:00.001-06:00

My daughter is a Rebel and I couldn't be prouder. Now I know at first this statement may seem strange, but let me explain. This year Riley joined the Rebels Dream Team, a cheer squad for special needs kids. Today was the very first cheer event and I was overwhelmed. After only 4 practices, I was a little nervous, but our team did an AMAZING job! Today was "Marching of the Rebels" where each of the Rebel squads was introduced and performed a portion of their routine, to kick off competition season. Everyone cheered for all the squads but when the dream team took to the mat, everyone was on their feet, clapping and encouraging our team. It was such a positive experience. I have to admit, I was so overwhelmed I cried the entire performance. I have never seen my daughter look so grown up and absolutely adorable as today in her cheer uniform and make up. She is even on top of a stunt! I'm so proud of all our Rebels and can't wait til competition. Today my daughter got to be a real cheerleader and she loved it! I thank God for the Louisiana Rebels, for coach Darla and all the other coaches that help make her dream of being a cheerleader a reality. WOLHG! Win or Loose Honor God, that's the Rebels motto, And I'm sure that seeing the smiles on our kids faces today put a smile on HIS. My daughter is a Rebel, and I LOVE IT

The Story of Riley

2011-10-27T16:34:00.000-05:00

I found this article today, and I had to share. It made me think about the Story of Riley, and though I don't know the next chapter, It is the best story in the world! I totally agree with Amy, Down Syndrome doesn't define Riley as a person, she is so much more than her extra chromosome, and we are so blessed to be able to share in her story~Alena

Explaining Down Syndrome, To My Daughter, And Myself,

Amy Julia Becker

A few months back, I mentioned to our daughter Penny that she would be meeting another little boy who had Down syndrome, just like her. She didn't say anything in response, but later on that day, when Penny was at school and William was getting ready for a nap, he said, "Mom, what down syn mean?"

"Down syndrome, sweetie. Not down syn."

"I know drum," he replied. "What down syn mean?"

I nodded slowly, realizing that he was envisioning making music, and grateful that he didn't have a concept of "sin" on hand. So I said, "Well, it's all one word, and it doesn't have anything to do with an instrument." I searched a mental map for words to explain a chromosomal anomaly to a two-year old. I began, "It means Penny has an extra part in her body," but I realized that sounded as though she might grow a third arm. Then I said, "It's something that makes Penny special."
He stuck out his lower lip. "I want to be special."

I hugged him tight.

I haven't used that explanation since. But I've thought a lot about William's question. And I've realized that as much as I understand what Down syndrome is, biologically, I don't know what it means in any broader sense. I know Down syndrome is the presence of an extra chromosome 21 in every cell of Penny's body. I know it can cause heart defects and learning delays and hearing loss and vision problems. I know people within our culture tend to glorify or vilify it with stereotypes ranging from pronouncements about how people with Down syndrome are all sweetness and light to those that imply people with Down syndrome shouldn't exist.

On Monday of this past week, Sequenom, a biotechnology company in San Diego, released a new prenatal test designed to detect Down syndrome in the tenth week of pregnancy. In contrast to other screening tests, this one is 98% effective at identifying Trisomy 21. And in contrast to chorionic villa sampling and amniocentesis, this test is non-invasive, posing no risk to the health of mother or child. It's hailed as a great advancement in prenatal testing because it is both accurate and non-invasive. But as much as this test might be able to tell parents that their developing baby has an extra chromosome, I'm not convinced that this piece of information tells them much of anything at all.

I've seen Penny's karyotype, the graphic representation of her chromosomal makeup, including those three stubby lines clustered together like three old men squatting side by side. I've visited the doctors--the developmental pediatrician, the gastroenterologist, the cardiologist, the endocrinologist, the otolaryngologist, the ophthalmologist, the neurologist, the geneticist, even, for one harrowing season of unnecessary concern, the oncologist. I know that it is probably because of Down syndrome that Penny wears glasses, although three generations of typically developing women in my family have worn glasses at an early age, so maybe it's just heredity. It is probably because of Down syndrome that she is short, and yet I was always the smallest person in my class at school and still only top five feet in heels. I know that there are days when she is the loveliest child I've ever met--when she runs to my side and says, "Hug!", when she asks, "How was your day, Mom?", when she sings to her little sister and brings her toys, when she asks to pray for someone who is sick. But I also know that she is no more sweet or loving than her brother, and that she tests my limits and disobeys and deceives me about her intentions in equal measure too.

George Estreich, author of The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit explores the etymology of the term Down syndrome, and his explanation gives voice to my own confusion:

A syndrome means, at root, a 'running together.' When you have a child, it all runs together: the heart defect, the eyes, the way her voice sounds, the name of the speech therapist, the worries over the future, the joys of discovery, the sliding sense--slow, quiet, enormous, an avalanche in the skull--that different is not as different as you thought. The genes produce the child, who lives a story, whose story is bound up with yours. So reducing a child to a heap of medical fragments is, for a parent, a complicated and dissonant act. It is a necessary fiction, a story one tells only in order to move on.

Maybe we've moved on.

William hasn't asked again, but if he does, I still won't have a definition to give him. Instead I have a story, a story that includes trips to the doctor and an Individualized Education Plan, a story that includes Penny's first loose tooth and skinned knees and birthday parties, a story that includes William erupting into tears if his big sister forgets to give him a hug before she heads to school.

When Penny was first born, Down syndrome meant fear and sadness and worry. Now, it's just two words used to describe a biological reality that could never adequately define her as a person. Down syndrome doesn't mean much to me these days, but Penny--impulsive, adorable, a big sister who loves to pump on the swing and read books and sing songs--Penny means the world.

Buddy Walk 2011

2011-10-13T12:53:00.001-05:00

This past Saturday was our annual Up With Downs "Buddy Walk". It was amazing. It is so wonderful to be able to get together with families like ours, so many people, families and friends all blessed to know someone with Down Syndrome. I love seeing everybody, swapping funny stories, seeing how the kids have grown, etc. But I especially love seeing the new babies. It takes me back to when Riley was first born. We had no idea what our lives would be like fears, doubts, questions, I knew it would be different, but I never imagined it would be this great. To see the smiling faces of all these kids, like mine who are special not because they have an extra 21st chromosome, but because of who they are it remarkable. This year Riley's great grandparents, Gigi and Poppy Larry even got to come! It was awesome sharing in this community with them. Riley had a blast as always, she was worn out by the time we got home, but we loved every minute of it. A special heartfelt thank you to everyone who helped make the Buddy Walk such a success. I can't wait til next year! If ever you want to put a smile on your face, and joy in your heart, join a Buddy Walk somewhere. You'll be glad you did!

Wordless Wednesday(a little late--Buddy Walk '11)

2011-10-13T12:46:00.000-05:00

Wordless Wednesday(Disney trip!)

2011-09-28T12:05:00.000-05:00

Wordless Wednesday

2011-09-14T11:40:00.000-05:00

I CAN!!!!!!!!!!!!

2011-08-30T23:25:00.000-05:00

I couldn't be prouder, my little reader!

Beatitudes for Disabled People by Majorie Chappell

2011-08-26T20:03:00.000-05:00

This was too beautiful not to share!!

Blessed are you that never bids us "hurry up" and more blessed are you that do not snatch our tasks form our hands to do them for us, for often we need time, rather than help.

Blessed are you who take time to listen to defective speech, for you help us to know that if we persevere, we can be understood.

Blessed are you who walk with us in public places and ignore the stare of strangers, for in your companion ship we find havens of relaxation.

Blessed are you who stand beside us as we enter our new ventures, for our failures will be outweighed by times we surprise ourselves and you.

Blessed our you who ask for our help, for our greatest need is to be needed.

Blessed are you when by all these things you assure us that the thing that makes us individuals is not our peculiar muscles, nor our wounded nervous system, but the God-given self that no infirmity can confine.

Blessed are those who realize that I am human and don't expect me to be saintly just because I am disabled.

Blessed are those who pick things up without being asked.

Blessed are those who understand that sometimes I am weak and not just lazy.

Blessed are those who forget my disability of the body and see the shape of my soul.

Blessed are those who see me as a whole person, unique and complete, and not as a "half" and one of God's mistakes.

Blessed are those who love me just as I am without wondering what I might have been like.

Blessed are my friends on whom I depend, for they are the substance and joy of my life!!

She'll get it!

2011-08-26T19:53:00.000-05:00

Well, the first full week of Kindergarten is in the bag. And aside from getting into "time out" for running away from her teachers(she just loves to be chased, thinks it's hilarious) Riley did pretty great. I am so grateful to her teachers for their patience and understanding. Her teacher said "when she runs away, I put her in time out, she will get it" And knock on wood, she was good and got no time outs the the later part of this week. Of course I'm sure the good behavior had nothing to do with the bribe of M&M's I offered as an after school snack if she didn't get into trouble, lol. Not only are her teachers(regular classsroom, and special ed) wonderfully encouraging, but the other children have been great too. The older kids who are on the safety patrol look out for her, and after 1 week, she is walking to kindergarten all by herself. The first few days of school, I parked the car and walked her to kindergarten which is in a separate building in the back of the school. Now, she gets out of the car, and walks in with all the kids, the first day of her walking by herself, I called to make sure she made it and didn't end up in 5th grade, and sure enough she did exactly what she was supposed to, and walked to Kindergarten. Now she looks like such an independent "big girl" with her Dora backpack, prancing her way into the school and out to Kindergarten, my baby is growing up and I'm so proud of her.

Kindergarten, off to a good start

2011-08-21T17:01:00.000-05:00

Well, we made it through the first (partial) week of Kindergarten with no problems. Riley loves school and has adjusted pretty quickly to the school routine. The first day, there were tears(mine not hers) she said bye mom and was ready to get started. I am so proud that she loves school and learning. And I know that having some excellent daycare teachers and a very special Pre K family made this adjustment so much easier for her. We have started working on her sight words, and it amazes me to think that she will be "reading" this year. I am so blessed to have a beautiful daughter with such a great attitude, yes she may learn a little slower, but she is determined to learn and that is all I could have hoped for. I will keep updating on her progress. Thanks for sharing in this crazy journey with us!

Wordless Wednesday(first day of Kindergarten)

2011-08-17T21:30:00.000-05:00

Testing???

2011-08-11T22:54:00.000-05:00

This morning I took my big girl to school for her scheduled testing. It was a standardized test(part of which was given at the beginning of pre k, the other half, administered before Kindergarten):( Riley wanted to play in the classroom instead of sit and answer questions, so I worry she didn't test up to her potential. It is very frustrating for a parent who knows their child knows/can do certain things, but isn't given credit for them because it she doesn't demonstrate them at set instance. I know I shouldn't worry, the test doesn't determine grades or anything else, it is just so hard because you want everyone to see the progress and potential in your child. Other parents do you have the same concernns? How do you handle testing??? On a positive note, I did hear some of the questions so I know what to work on with her. Also in the naming body parts section, I knew she knew arms, legs, eyes, etc., but was plesantly surprised when she correctly identified ankle. She's so smart. I love my girl!!

Wordless Wednesday(a look back!)

2011-08-10T10:00:00.004-05:00

Back to School Night

2011-08-09T22:56:00.000-05:00

Tonight was Back to School Night at school. We had such a great time. We got to meet Riley's teacher and check out her new classroom. She had such a good time playing in her classroom. In addition to meeting her teacher, we met the special ed teacher who will be working with Riley. The special ed room Riley will go to when she is pulled out for Reading and Math is actually rig
ht next door to her kindergarten classroom so she won't have to go far. We also saw some familiar faces, including Riley's speech therapist who she loves and performs well for! I'm looking forward to a great Kindergarten year and I'm so excited to see how much Riley grows and learns. Here are some pics from Back to School Night.
P.S. Check back tomorrow for Wordless Wednesday(a look back) I will be posting pics from Pre K, a look back before we start this Kindergarten adventure

Starting School

2011-08-04T12:01:00.000-05:00

Sorry it's been awhile, it's been a long hectic summer. But we are getting ready for school and hopefully getting back into a routine. I still can't believe this tiny little girl who I feel like was born yesterday will be starting Kindergarten in 2 weeks. I know she's ready, she loves school and has really missed her friends. After school supply shopping this weekend she wore her new school shoes and backpack around the house for hours asking if she could go to school. This year will be different as she will be pulled out of her regular kindergarten classroom to go to special ed for an hour for math, and reading each day. She will continue to receive her speach, ape, ot, and pt therapies, and because she attended pre k at the same school she already knows her therapist and has bonded with them which makes her perform better for them. I hope that she does well and countinues to love school and learning. I'm confident that she will do her best! And as a parent there is nothing more I can ask of her. It is my goal to update the blog on a regular basis this year as we start this new journey into elementary. If there are any parents with tips, tricks, suggestions, on how to make this year successful, please comment. I love hearing from other parents! Also we signed up for the "Dream Team" a cheerleading team for kids with special needs, it starts in September and I can't wait to see her in her little uniform. I promise I will post pics. Have a great day and Always remember "the only disability in life is a bad attitude!"- Scott Hamilton

Wordless Wednesday (Easter!)

2011-04-27T12:28:00.000-05:00

2011-04-02T15:29:00.000-05:00

Today was a wonderful day, we spent the morning at Riley's first tball game. Through our local little league there is a Challenger Division just for kids age 4-18 with disabilities. Riley was so excited about playing ball she even let me wash and brush and braid her hair last night(She usually fights me on this but agreed when I told her we were getting her "baseball hair" ready). I was so touched by how sweet and supportive everyone was. The people who volunteer there time to ensure that children with disabilities have the ability to play baseball and just have fun are truly special. All the players and there families had such a great time! It was so inspiring. Here are some pics from todays game.

WORLD DOWN SYNDROME DAY

2011-03-10T10:21:00.000-06:00

WORLD DOWN SYNDROME DAY is coming up 3/21, Will you join us in a worldwide celebration - hold an event, wear a special t-shirt or badge, change your FB profile photo - do something to show that our support for people with DS encompasses the WHOLE WORLD! Wear blue and yellow, make a DS ribbon, or print a picture and pin it to your shirt. It doesn't take much to show you care! Here are some of my favorite DS Awareness pictures you could use for the day. I'm asking everyone who I know that participates in World Down Syndrome Day to take a picture of

and email, or tag me in it on Facebook for my World Down Syndrome Day album. Please show your support for people with Down Syndrome. "Different isn't bad, Different is just Different"~ Lauren Potter, Glee Actress with DS.

Wordless Wednesday(Sock Hop!)

2011-02-23T21:50:00.000-06:00

2011-02-23T20:01:00.000-06:00

I wanted to share this article I read today. I hope you all enjoy!

FEBRUARY 18, 2011 1:43PM
Today I Learned Something About Down Syndrome
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I'm sitting at Starbucks (that's a worldwide chain of coffee shops), checking email, making phone calls, "sipping my triple tall non-fat latte," and thinking about the fact that people with Down Syndrome make me uncomfortable.

My fear is that if I make eye-contact with a Down Syndrome person they will talk to me, I won't understand them, and then I'll feel embarrassed. (Yes Virginia, this phobia is "all about me").

So this particular Starbucks employs a young woman who has Down Syndrome. (I was going say "is afflicted" or "is a victim" of Down Syndrome, but my lack of knowledge of this syndrome leaves me wondering if "afflicted" or "victim" are appropriate descriptions).

The young woman's job is to dust, sweep the floor, clean the display case, bus the tables, and water the plants. She goes about her business with extreme diligence and a broad smile.

So I was sitting there working on a quote for a customer, when my fear became a reality. The relative quiet of the establishment was broken with the words, "So how are you doing today?" I glanced up to see the beaming young woman looking right at me. With a small amount of anxiety I replied, "I'm doing great. How are you?"

It seems impossible but her smile got even bigger. "I'm great too but thank God it's Friday." With that she waved and walked off to continue dusting the Tazo Tea display.

"Thank God it's Friday?" Did she really just say "Thank God it's Friday?" Does that mean that there's a discernible difference between this day and any other day in her life? That perhaps a Saturday spent with family or friends, or by herself, is an appealing alternative to working her shift at Starbucks?

Does this mean that she doesn't just meander her way through the day oblivious to what's going on around her? She has good days and bad days... not just "days?"

I am beyond guilty of not understanding the nuances of life that a person with Down Syndrome experiences. It never occurred to me that she would have a thought like "Thank God it's Friday." I assumed that every day was the same for her and others with Down Syndrome. In my ignorant mind they seem blissfully disconnected from the challenges of day-to-day life.

I realized at that moment that I know nothing about Down Syndrome and I let my fear and assumptions dictate how I would interact with people like her.

She walked back to me, carrying a tray of Dixie Cups. This time I noticed her name tag: Stephanie.

"Would you like to try a Caramel Apple Spice?"

"Sure." She stood, waiting for me to taste the drink. I did. I didn't like it.

"How is it," she asked?

Up until about five minutes ago I would have avoided telling her the truth, fearful that I might hurt her feelings or confuse her.

"Actually Stephanie, it's too sweet for me."

"Yeah, too sweet. I don't like them either." She strolled over to the next customer. "Would you like to try a Caramel Apple Spice?" She points at me. "He thinks they're too sweet."

Stephanie walked back to me with a look of slight embarrassment. "My name isn't Stephanie. It's Amber. I left my apron home and had to borrow Stephanie's."

I'm glad that I met Amber. Maybe now I will ignore preconceived ideas that are based on nothing other than vague, uninformed impressions, and realize that the Ambers of the world, just like me, can't wait until the weekend arrives.

Or maybe I'll just continue to meander through the day, oblivious to what's going on around me. I have a lot more practice doing that.

Wordless Wednesday(snow day) 1 day late

2011-02-10T21:48:00.000-06:00

Never Underestimate.

2011-02-05T14:21:00.000-06:00

Sorry I haven't blogged in a bit. We have had bad weather, ice and snow, which we are not accustomed to in Louisiana. The sun came out this morning and the snow is melting. This morning while cooking breakfast, I was reminded of something very important. NEVER UNDERESTIMATE. I was fixing(southern speak for making)hash-browns, bacon, and eggs, and Riley was sitting in the kitchen watching me cook, chatting with me, and trying her best to help. All of a sudden seemingly out of nowhere, she pointed to the toaster and said "Momma, I want some toast". I had no idea she knew that we use the toaster to make toast, as we don't fix toast very often. I was quite impressed, that she, without being consciously taught, knew that toast comes from the toaster. I know that she is doing so well in school and that she watches and imitates EVERYTHING, so I shouldn't have been so surprised but I was. It reminded me of something I was told when she was first born. A woman, who didn't know my husband or I until the birth of our daughter(she is the neighbor to my husband's aunt) who has given us so many insights and encouragement I could never thank her enough, told me once, NEVER UNDERESTIMATE, What she will be able to learn and do. She said that her daughter, then age 4 who has DS had gotten out of the tub and she said, dry yourself off, not expecting anything and Lexie took the towel, and dried herself off. She was super impressed and then wondered How long could she have been doing this, and I just never asked?? So my thought for today is not to pressure or expect more than your child can do, but also to NEVER UNDERESTIMATE the capabilities of your child!

Fancy Nancy Update.

2011-01-31T18:41:00.000-06:00

Thank you so much to everyone who voted. I wish I would have known about this sooner, but for only being in the contest 1 week, I'm overwhelmed at all the support and the sweet comments. Thank you for showing Riley that she's more alike than different, and for embracing her fancy extra chromosome.

Don't forget to VOTE!

2011-01-26T19:45:00.000-06:00

Only the top 20 will be finalist so please vote everyday!

Vote for my Fancy Nancy Fantastic Fan Photo: Riley's Fancy Flapper

Wordless Wednesday(Pics from School)

2011-01-26T19:43:00.000-06:00

Please help.

2011-01-25T21:59:00.000-06:00

Hey everyone out there in "Blogland". I just got my sweet little angel to bed, after reading 3 books. She loves to hear stories and to "read" to me. I'm so happy she is developing a love of books. I have often thought how I wish there were more stories with children with Down Syndrome in them. Since she was born, I have searched for some fiction books about children with Downs, and have found only 1. I do have a dear friend who is working on remedying this by writing a story, inspired by Riley, which I truly hope gets published. But in the meantime, I have found a contest that would allow Riley to be apart of one of her favorite series, Fancy Nancy. I have entered Riley in this contest and would love her to win. I think it would be wonderful to have her represent children with Down Syndrome, so I'm asking PLEASE HELP. You can vote for Riley by clicking here. Fancy Nancy Fantastic Fan Photo Contest Thanks, the winner will be announced Feb. 2 keep your fingers crossed

2011-01-24T21:01:00.000-06:00

I made this video in October for Down Syndrome Awareness month. Riley truly is the best most unexpected blessing I could have ever asked for. For those of you who don't know our story, we were unaware Riley would have DS, we were told shortly after she was born, and although we knew our lives were forever changed, We couldn't have imagined on that day a little over 5 years ago, how much our lives would change for the better.I didn't know it then, but She is EXACTLY what I needed. I am so proud to be her mom. I thank God everyday that he trusted me with something so precious. The song is from one of our favorite movies(the first one Riley saw in theater) and I think it fits, she is the best thing I never knew I needed, I'm sure glad, God did! Do any of you have an experience with something unexpected that changed your life? I'd love to hear your stories.

Creed for Babies With Down Syndrome

2011-01-22T19:44:00.003-06:00

My face may be different, but my feelings the same.

I laugh and I cry and take pride in my gains.

I was sent here among you to teach you to love as God in the heavens looks down from above.

To Him, I'm no different. His love knows no bounds;

It's those here among you in cities and towns that judge me by standards that man has imparted,

But this family I've chosen will help me get started.

For I'm one of the children so special and few that came here to learn the same lessons as you.

That love is acceptance, it must come from the heart;

We all have the same purpose, though not the same start.

The Lord gave me life to live and embrace, and I'll do it as you do? But at my own pace.

As I am getting back into blogging I wanted to reshare this.

2011-01-21T22:31:00.002-06:00

ok ok, so I know I keep promising to Blog more, but Life is so hectic it's hard to find the time. I have made it a Resolution to do better this year, I am going to revamp the blog(hopefully this weekend) and start posting something everyday, even if it is just a picture of my adorably cute 5 year old. Check back soon for updates! Thanks for all who have stayed with me through my absence. ~ Alena

Growth chart for Down Syndrome

2010-08-20T11:09:00.003-05:00

Riley went to the doctor yesterday for a check up and vaccinations so she would be all ready for school. She now weighs 34lbs and is 39 1/4 inches tall. While she is the size of the average 2-3 year old, I found the growth chart for children with Down Syndrome and she is in the 50th percentile in weight and 75th percentile in height. It is very helpful to refer to the growth chart for children with DS. Just like any other area, it is harder to compare her to typical children so having this resource is invaluable. Here is the link for growth charts for girls and boys with DS from the NDSS. http://www.ndss.org/index.php?option=com_content&view=article&id=71&Itemid=91

Bruno Mars - Just the Way You Are (Cover by MattyBRaps ft. Tyler Ward)

2010-08-18T18:36:00.000-05:00

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I had to share this video, little boy rapper who loves his sister just the way she is. Nothing cuter or sweeter out there!

Wordless Wednesday(Summer Fun)

2010-07-28T21:44:00.002-05:00

2010-07-10T19:15:00.003-05:00

Hey friends out there in blogland, sorry I haven't posted in awhile. Summer has been pretty hectic. Riley will be starting Pre K at Elementary School next month so we've been preparing for that, my husbands band is back together and just played their first show last Sat...etc. We've been busy. I will try to get back in to the grove and post more often. My little model has been pictured in the Red River Moms(June and July issues and will be October's cover!) and the local paper(Bossier Voice) recently. She's such a cutie and loves seeing her pictures. Here are a few new ones of her, promise to write more soon.

Just like Daddy

2010-05-25T20:34:00.004-05:00

I've known since I was a little girl that there is something special between fathers and daughters. I remember as child how much I idealized my father, even wanted to change my name to Jamie(my dad's name is James.) Tonight I saw the hero worship in my daughters eyes for my husband(and he wasn't even home. LOL)I must start by saying my husband is an excellent cook and he loves to be in the kitchen creating. He often mixes his own spice rubs and seasonings. This evening while he was at band practice I came out of the bathroom to find this scene: Riley had pulled her vanity stool out of her playroom and into the kitchen, used it to climb onto the counter, opened the cabinet and got down a Tupperware bowl. Then proceeded to mix in said Tupperware bowl, an entire bottle of garlic powder, half a bottle of gumbo file', sea salt, and cavandar's all purpose Greek seasoning. When I walked in I said Riley what are you doing? Are you being daddy? She said proudly, "I cookin". I was laughing so hard and thought it was so cute, it was hard to fuss,so instead I captured the moment with these pictures.

Wordless Wednesday(Ballerina)

2010-05-12T16:17:00.003-05:00

Dancing queen.

2010-05-06T21:03:00.001-05:00

Here is the cutest thing ever, my prima ballerina in her first recital.

Wordless Wednesday(Riley's artwork)

2010-04-28T20:45:00.003-05:00

2010-04-24T09:07:00.002-05:00

Sorry I haven't posted in awhile, we've been busy. Here are pictures from a weekend getaway we took. Enjoy. Promise I will blog more soon. Alena

A free photo slideshow by Smilebox

Future Superstar!

2010-04-11T20:48:00.000-05:00

Check out my future superstar, jamming out Just like Daddy!

IEP

2010-04-08T23:20:00.003-05:00

Thursday, I had Riley's annual IEP meeting. For those of you not familiar, IEP is Individual Education Plan. In this meeting, myself and all three of the therapist that see Riley, as well as her daycare teacher got together,to discuss progress and set goals for the upcoming school year. In her last IEP(May of last year) each therapist(speech, APE, and Academic) set a goal and listed 3-4 objectives. I am so proud to say that she met all 3 goals and accomplished 8 out of 10 objectives. We set goals for the upcoming year to continue to push Riley to be all that she can and help her achieve success in the classroom setting. One test, given by her teacher therapist asked many questions and measured the developmental age based on what the child can answer/perform. In several categories,I was amazed to see that Riley tested at over 5 years old. (She's only 4 1/2!!!) I'm so proud of her and we will continue to read to her, practice what she's working on in school, etc. to ensure she continues on the path to excellence. Every moment can be a learning opportunity. Parents, whether your kids have special needs or not, take the time to invest in their future. They are the world's greatest asset. Try turning off the radio, or dvd player in the car and point out things you see or review what they are learning at school. Driving to and from school is some of my favorite time with Riley, It's a constant reminder that having DS doesn't limit her on what she can learn and achieve.

Wordless Wednesday(Easter pictures)

2010-03-31T15:18:00.003-05:00

Needing Mommy!

2010-03-27T13:34:00.002-05:00

Is there an age where you stop needing your Mommy? I know as children grow, they become more independent. But even now when I'm grown with a child of my own there are times when I still want my Mom. Anytime I'm sad or sick I still wish My mom was closer. Right now my poor sweet baby is sick and all she wants is ME. She doesn't want anything more than to sit and be held by Momma, even letting me rock her in the old rocking chair. This rarely happens as active as this 4 1/2 year old is I hardly ever get to sit and hold her and rocking her gosh, almost never. So even though I am taking good care of her and giving her medicine and wishing she gets well soon, I'm taking advantage of this time where my girl just needs her mommy!

2010-03-23T18:11:00.003-05:00

Last night, Riley and I went to the funeral home for a visitation for a family friend who passed away due to cancer. As we walked in I saw a lady just gravitate towards my child. I am getting pretty bad about remembering names and faces and hoped I was not supposed to know her. She walked up and said. Your daughter is beautiful! My grandson is 19 months old and he has DS. The mom and grandbaby had just left(Bummer, I would have loved to meet them!) But I talked with the woman and her husband for quite a while. She asked about milestones, and when Riley reached them. I told her whenever I'm out and see a child who has Downs I just want to give em a big hug. They are so precious and I somehow feel like we are all connected. Like we're in an exclusive club and WE ARE THE LUCKY ONES!! I feel like we are all kindred spirits blessed with more love than we could have imagined. And though each story is different, they all share common threads. Through events like Buddy Walk, local DS groups, and even this blog, I have been blessed to meet so many wonderful families who are living each day to the fullest and loving every minute with their special children. I feel so blessed to be a part of this loving and supportive community! As we left, in typical Riley fashion, she hugged and waved and blew kisses to everyone. To her we are all the same, she doesn't see race, economic status, abilities, etc. She just sees a world of friends, and if we were all a little more like that, this world would be a better place.

WORLD DOWN SYNDROME DAY! 3/21

2010-03-21T12:34:00.002-05:00

HAPPY WORLD DOWN SYNDROME DAY! Down Syndrome International (DSI) has officially earmarked 21 March as World Down Syndrome Day (WDSD). The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. The annual observance of WDSD aims to promote awareness and understanding of Down syndrome and related issues : and to mobilize support and recognition of the dignity, rights and well being of persons with Down syndrome.

I can't begin to count the many ways my life has been forever changed and enriched by Down Syndrome. Since 2005, when we were blessed with our precious little Riley, I have learned more, grown more, and loved more, than I ever thought possible. Everyday I am amazed by how much she makes me smile, laugh, and just how much I love her. Being Riley's mom has changed me in the greatest ways. And on today, World Down Syndrome Day, I celebrate the beautiful child Riley is and the wonderful person she will become.

Wordless Wednesday 2( Kika's bday shopping)

2010-03-17T20:01:00.001-05:00

Wordless Wednesday( St. Patty's Day at School)

2010-03-17T11:29:00.003-05:00

2010-03-09T11:39:00.003-06:00

Hello Everyone,
Sorry I haven't blogged in a while. Things with a 4 year old get hectic. Since I haven't posted lately I thought I'd give an update on recent events.

School Days?
A few weeks ago, I was told by daycare that since she would be 5 before the deadline, Riley would start Kindergarten this August. When I tell you I was not prepared for this at all, I mean it hit me like a ton of bricks. I knew that she(and I)weren't ready for big school. I had planned on keeping her at her excellent daycare one more year, because she is testing at about a year delay, I felt this would give her some "catch up" time and lead to successful school days. After several hours of crying, and with the help of my wonderful Mom(THANK YOU SO MUCH!!)I was able to explain to the local school board, the special ed coordinator to be exact, our situation. Not only did I not feel like Riley was ready for school she is so small(she only wears 24months-2T and she'll be 5 this year). The woman explained that I did not have to enroll Riley in Kindergarten this year, that she could wait one more year to start and that because of her special needs, school district was not a determining factor because we can send her to the school we feel has the best programs for her. WHAT A RELIEF!! So in August, if she is to old for daycare, then we will be sending Riley to a preschool program at a local elementary school where Gerard's cousin is a Kindergarten teacher, then next year she will attend there and have a familiar teacher. That should help ease my anxieties about school. It is amazing how fast they grow. When Riley was born, I thought it would be forever before I was worried about school, but that day has come.

Ballerina? After 3 weeks of dance class, with no significant progress, I was facing a difficult decision. I did not want to give up on Riley, but with her not participating and spending the entire class running around, nor did I want to pay for her to run(something she can do at home for free). My mother-in-law went with us to dance and was pretty irritated that neither of the teachers engaged Riley or even tried to get her to join the group and participate. I asked for a withdrawal form and then something wonderful happened. Watching on the tv monitors(parents aren't allowed in class) I saw Riley joining the group. The head teacher decided to hold her hand and say Riley you will be my partner. The rest of the class she stood right by the teacher and participated. Even attempting the ballet positions, so I know she had been watching at least. During a bathroom break, I snuck in a told Riley how proud I was of her. The teacher said, "to be honest with you, I was scared to try to make her participate and stand by me because I didn't want to hurt her feelings, but now that I know that this is what she needs she'll be my partner. Riley really seemed to enjoy the rest of the class,I think she felt special standing up front with the teacher, and given the extra attention, she may turn out to be a prima ballerina after all.

Update

2010-02-26T20:50:00.001-06:00

Hello Everyone,
Please continue to pray for Katy, Here is a blog by my cousin Al. He is updating as he can. Thanks for your support. Alena

www.katyupdate.wordpress.com

Please pray for Katy

2010-02-24T20:04:00.001-06:00

This is my cousins wife, please pray for her and their entire family. This is a really hard time for them and they need all the prayers they can get. Thanks, Alena

Queen Riley

2010-02-16T20:56:00.005-06:00

It has been a very memorable couple of days for Little Miss Riley. Yesterday there was a golf tournament to benefit her wonderful daycare. The daycare director asked if I would bring Riley to the Press event for some pictures. They local news interviewed me and Riley and we were TV stars last night. We recorded it and watched our 30 second clip several times. She was amazed to see herself on TV. As if being a "Television star" weren't enough, today is Fat Tuesday(MARDI GRAS, for those of you not familiar with Louisiana)and there was a parade at daycare. Riley was Queen of her class, she even had a court with Prince and Princess and a handsome little King. Here are some pictures from her reign as Queen.

Let it snow

2010-02-12T20:56:00.004-06:00

A rare occurrence in Louisiana, we actually got snow. Real snow and it stuck, for a little while anyway. Here are some pictures of Riley enjoying the winter weather.

Wordless Wednesday(Heart of Geauxld! )

2010-02-10T19:58:00.002-06:00

Wordless Wednesday(first dance class)

2010-02-03T18:51:00.003-06:00

Dance, Dance!

2010-01-31T20:08:00.003-06:00

I am so happy to report that on Wednesday Riley is starting dance class. Pre-ballet and tap to be specific. I couldn't be more excited. Today, with the help of Nonna, we went shopping and are all ready for class to start. I must admit when I saw the pink leather ballet shoes, so tiny and perfect, I teared up. My tiny sweet baby has grown so fast and is now on her way to becoming quite a little lady. I'm so proud of her. She continues to amaze me! I'm sure there will be many posts as we start out on this journey, this will be the first group activity/sport Riley has been involved in and I'm nervous and excited! Look for many pics and maybe some videos of my baby ballerina. Here she is modeling her new dance clothes and shoes. The ballet shoes couldn't be any cuter, but Riley is absolutely in love with the tap shoes and the noise they make(especially on our wood floors!)

WHO DAT!!!

2010-01-25T20:02:00.002-06:00

Last night was a very happy night in the LaBorde house. For the first time in franchise history the New Orleans Saints are headed to the Super Bowl!!!. You see, we are just a little fanatic about our Saints, we just had 8 puppies, all boys, all named for Saints players. They're our little team. The game was a nail biter, but we pulled through!And when Hartley hit the field goal to win in overtime, our house got LOUD! We were all yelling and screaming and jumping for joy. Riley stayed up for the whole game and wore her cheer uniform proudly. We are trying to teach her to say Who Dat! Can't wait for the Super Bowl. Geaux Saints.

Blogs to See

2010-01-21T18:45:00.002-06:00

I am so thrilled with my blog. When I started a few months ago, I really didn't know anything about blogs or blogging, and I still have a lot to learn. But blogging has definitely opened my eyes and my heart. I have "met" many new friends and have learned so much from this blog. I follow several blogs dealing with Down Syndrome, each doing their part to change the way the world views DS. I am so happy that so many people love and support children like Riley and are working to make the world a better place for children like her. Here are some of the blogs I follow, if you get the chance check them out, they range from moms of small children to a 13 year old girl with Down Syndrome who writes her own blog. They are all wonderful, and I hope you get as much joy out of them as I do. Alena

http://itsmylifemom.blogspot.com/

http://bridgets-light.blogspot.com/

http://lifewithextras.blogspot.com/

http://wwwourunexpectedjourney.blogspot.com/

Wordless Wednesday(Cheerleader)

2010-01-13T11:15:00.003-06:00

Erase Down Syndrome?

2010-01-12T18:00:00.002-06:00

I heard from a very dear friend today. She had just read about a new medical test that is being introduced. It will determine the presence of Down Syndrome in the first trimester. The article on the test said that doctors predict it will nearly erase Down Syndrome because so many people will opt to terminate the pregnancy. I cannot imagine a world without Down Syndrome, it would be a world without Riley, Lexi, Aubrey, Blake, Max, and so many other wonderful children and adults. A world without sunshine. I know that having a child with Down Syndrome is not what anyone hopes for, but those of us lucky enough to have the opportunity sure are blessed. I know that it is a life of struggles but it is also a life of purpose, a life worth living. I had the triple screen test when I was pregnant, it came back ok, so we did not suspect Down Syndrome and of course when Riley was born we were shocked, scared, and saddened. But I look at our wonderful life now, I wouldn't change one single thing. I hope that through blogs like mine(and some of the wonderful ones I follow),Buddy Walks, etc. we change how the world sees Down Syndrome. My sincere hope is that everyone learns to see the "Upside of Downs"

Little Miss Polite

2010-01-11T22:02:00.002-06:00

It is never too early to start teaching manners. Gerard and I started with please, thank you, and your welcome. Riley is a pro and rarely forgets to use these. Now we are working on yes ma'am/sir, no ma'am/sir. We make her repeat these often. Especially when we are explaining why she can't do something or why she got into trouble. It's really cute the way she says yea mam, yea tir. This morning, while getting ready for work and school, I said, Riley you sit tight while I go get your boots ok. (If she wonders into her playroom, it becomes a battle to get her out the door for school) Her normal response would have been ooh kaaay, but she looked up at me, blue eyes shinning and said. "Yea Mam". It was so precious! I was so proud of her manners. I gave her a big hug and thanked her for being so polite and told her she was becoming quite a little lady, to which she smiled and said Yea.

Cutest thing EVER!

2010-01-07T20:30:00.002-06:00

I had to share the cutest thing EVER! My sweet child loves music and loves to dance. Her absoulute favorite thing to do is the cha cha slide(a hip hop line dance). She loves it so much and asks to Cha Cha so often I had to download the video and save it to my computer. At least once a night she says, "Mama, I wannna ta ta(cha cha).She also really likes to perform for other people. Anytime I'm down, or having a bad day, All I have to do is ask her if she wants to cha cha, it brightens my day everytime. So I thought I'd share it with you, hope it brightens your day too!

2010

2010-01-04T19:07:00.003-06:00

Have you ever seen those holiday letters some families send out? The kind that update or give an overview of their entire year. We do not send those letters.I do good to get all my Christmas cards out before Christmas Eve. However I thought in this first post of the new year, I would give a progress report on Riley, the ups and downs, reaching milestones and surpassing goals in the past 4 years.
As many of you know, we had no idea when I was pregnant that Riley would have DS. On our 1st wedding anniversary(6 days before my scheduled induction) I went into labor. After she was born and we were given the diagnosis, we were shocked, hurt, scared, etc. I remember thinking how could this happen to us. Once we finally saw her, and I held her in my arms, I knew she was our perfect child and that GOD had given her to us for a reason. And although we had no idea what our future would hold, we knew our lives would be filled with love. Looking back now, I feel ridiculous for wasting any tears, because when I think of Riley having Down Syndrome, all I feel is blessed. It does not define her or who she will be. I did not know at the time, but 1 in 3 children with DS have heart problems, many requiring surgery. 11 days after she was born, Riley was released from the hospital, with no heart, intestinal, vision, or hearing problems!
She began sleeping through the night immediately, in fact, the doctor told me at her 6 week visit that I needed to start waking her up to feed her. At 5 weeks, she rolled over. I don't think a parent has ever been so proud. I cried! It was then I knew that every milestone would be so important and we would never take them for granted. Her first year of life, Riley was pretty much a typical baby. She began uttering "da da" and after a while "ma ma" when she was around 9 months.
I was told that most children with Downs do not walk until they are at least two. So I was very happy when at 19 months, Riley took off(she hasn't stopped since)
We took baby signing classes and worked with therapist and day care teachers and by 2 she could communicate very well using sign language, (sometimes I miss those quiet times. LOL)
A little before her 3rd birthday Riley transitioned out of Early Steps(a therapy program for children birth-three) and into the school system. We went to an evaluation at the school board. Riley was given a doll to play with while I filled out paper work, then asked to put the doll away and stack blocks, name colors, match, etc. All she wanted was the doll, and she refused to perform, even simple task I was positive she could do. They cannot take the parents word, so Riley scored very low on these evaluations They offered her a spot getting on a school bus and riding across town all by herself 3 days a week. I did not feel we were ready for that so we opted to receive therapy at the wonderful daycare she attends. It is an inclusion center so children with and without special needs learn from each other. I am so passionate about how inclusion has helped Riley, I work diligently to raise money for her school and for training for other day care centers (even braving my fear of public speaking) It's amazing what love can make you do.
At her last IEP meeting after receiving one year of therapy, Riley is testing at an average delay of only 10.5 months. Meaning her developmental age is 3 years 8 1/2 months while her chronological age is 4 years 4 months. Not a very significant delay and she is growing, learning, and developing all the time. I am extremely certain she has a bright future ahead of her.
5 years ago I never could have imagined my life with Down Syndrome in it, now I can't imagine my life with out it! I feel so lucky to have Riley, she has brought such love and joy, not only to our lives but to so many family and friends. My hope is that through blogging and speaking about positive aspects of Down Syndrome changes stereotypes and fears and makes the world a better place for Riley and other beautiful children just like her. I don't know what 2010 has in store for our family, but I know that it will be a wonderful adventure based in love. HAPPY 2010 from our family to yours!

Wordless Wednesday(New Puppies)

2009-12-30T09:55:00.002-06:00

2009-12-26T09:38:00.006-06:00

I hope everyone had a very Merry Christmas. We sure did, about 2:30 am on Christmas morning, Gracie(our pit bull) had 8 adorable puppies. All boys and named after New Orleans Saints players(Who Dat!).Riley really enjoyed waking up to see that Santa had come and eaten her cookies and even some of the reindeer food had been eaten. She was so excited opening presents this year. Here are a few pictures from our day. Once again, Happy Holidays from our family to yours! Happy New Year, may everyone have a Happy & Blessed 2010.

Christmas Eve

2009-12-24T22:48:00.002-06:00

Sneaky Girl

2009-12-24T18:03:00.002-06:00

I have been so proud of Riley, she has pretty much left the tree and presents underneath alone. Well, I guess my pride was a little premature. About 20 minutes ago, she asked to watch a movie in her playroom. So I turned on one of her movies and began making cookies for Santa. I caught her out of the corner of my eye running with a present down the hall. I ran after her only to discover that was the third present she had taken. Two were already unwrapped in the playroom. Let me say that she is 4 and I know she cannot read, however she does know that her name starts with R(even though she calls herself Liley) any time she sees any word that starts with R she thinks it says Riley. So I guess she saw the gift tags and only grabbed ones with "R" because she only took her presents. Thanks goodness I caught the little sneak before all her gifts were gone. She's quite a smart cookie, and a sneaky girl.

Christmas Traditions

2009-12-24T17:30:00.004-06:00

One of my new favorite Christmas Traditions is making Reindeer food with Riley. It is so simple, just mixing oatmeal and glitter, but such a good time. She feels so big now that she's able to help. She even loves the little poem(Sprinkle on the lawn or door step at night, the moon will make it sparkle bright, as Santa's reindeer fly and roam, this will guide them to your home!) When we finish we sprinkle it on the yard, the glitter glistens in the moonlight and helps the reindeer find our house. When she wakes up Christmas morning, she runs out side to see if the food has been eaten, and sure enough it has been moved around. Wow, I know the reindeer enjoy their snack. Here are the pictures from making reindeer food this year. Enjoy and Merry Christmas!

Merry Christmas Everyone

2009-12-24T12:08:00.002-06:00

Make a Smilebox slideshow

Wordless Wednesday(Christmas Pics)

2009-12-23T08:51:00.003-06:00

Down Right Beautiful

2009-12-22T13:42:00.002-06:00

Christmas time always makes me sentimental. It brings such feelings of love and home. I count my blessings, especially for Riley. She has changed our lives in numerous ways, teaching us acceptance, grace, and above all the real meaning of love. The lyrics to the song Down Right Beautiful are wonderful. They remind me of Riley. I Hope you enjoy. Merry Christmas to everyone. Thank you for sharing in the Upside of Downs.
It was a Labor Day to remember when she came into this world
it was the day we had waited for so long.
Then the Doctor came and said to us with worry on his brow,
we’ll have to take her down the hall with us for now.
The word came back the very next day, your girl will be just fine,
but she will have some special needs unlike yours and mine,
but she will give you lots of love the kind that’s seldom seen,
and now I know she’s the child of my dreams.
She’s down right beautiful, she’s my little girl,
she’s down right beautiful, and she fills my world,
with lots of love, lots of smiles, and she’s happy can’t you see.
Yeah she’s down right beautiful to me.
Now she’s growing up oh so fast I can scarce believe my eyes,
it seems like only yesterday when I’d hear her cry,
now I know the day will come when she’ll go away,
till then she’s down right beautiful to stay.
She’s down right beautiful, she’s my little girl,
she’s down right beautiful, and she fills my world,
with lots of love, lots of smiles, and she’s happy can’t you see.
Yeah she’s down right beautiful to me.
She fills my world with lots of smiles and she’s happy can’t you see.
Yeah she’s down right beautiful to me.em>

Wordless Wednesday(Curious George Live) Sorry they're late!

2009-12-17T09:52:00.005-06:00

Comments

2009-12-15T16:04:00.002-06:00
Hello everyone,
It has been brought to my attention that people have been unable to leave comments on my blog. Somehow when I changed to the Christmas background the comments got turned off. I have turned it back on so I hope this helps. I look forward to many comments in the future. Alena

Wordless Wednesday(Christmas Party!)

2009-12-09T09:56:00.003-06:00

Love, Riley

2009-12-07T19:07:00.002-06:00

Santa Baby

2009-12-06T18:34:00.003-06:00

Today we attended the annual Up With Downs Christmas Party. Riley had a blast. She made a Christmas Picture frame, took pictures with Santa and played with friends. Ce Ce the clown even made her a pink poodle balloon animal. It was a great way to get into the Christmas Spirit. She was so cute with Santa, she kept saying "HO, HO, HO!" Here are some pics. MERRY CHRISTMAS!

Baking Cookies, Making Memories

2009-12-05T09:14:00.002-06:00

Is there anything as comforting as the smell of cookies baking? Last night, while we were grocery shopping Riley asked for cookies. This is pretty common as cookies happen to be her favorite snack. However, something was different. Maybe it was the cold weather or the Christmas spirit, but instead of reaching for the Chips Ahoy, I purchased cookie dough and asked if she wanted to help me make our cookies. She was so excited she scarfed down her spaghetti dinner. We cleaned up and started baking. Now since she is only 4 and we have not allowed her to be in the kitchen much I did get the pre-made dough, but we had so much fun and she was so proud next time we may make them from scratch. These were toll house caramel filled chocolate chip. I think they would make wonderful treats for Santa. The cookies were delicious but the time spent with my little helper was unforgettable. It was such a great night!

Christmas Past

2009-12-03T11:01:00.001-06:00

2009-11-25T10:19:00.000-06:00

Make a Smilebox greeting

Happy Bday Mamaw

2009-11-22T20:42:00.003-06:00

Yesterday we celebrated Mamaw(Riley's Great, Great Grandmother)'s 90th birthday. Mamaw may not be as spry as she once was, and her memory may not be too good, but one thing never changes, she's full of love. She used to keep Gerard(Gerd) after school and he was her "young en" now Riley holds that prestigious title, "Mamaw's young en". I am so happy Riley is able to know her. She has seen and done so many things in her lifetime. Just being near Mamaw brings a smile to my face, she accepted me into the family with open arms and has always treated me like one of her own, and since none of my grandparents are living, I relished having a her in my life. I am including pictures, one with all 5 generations! HAPPY BIRTHDAY MAMAW! WE LOVE YOU VERY MUCH!

Liley's Mama

2009-11-19T20:40:00.002-06:00

Riley is getting so big and smart. She does new things/says new words almost everyday. We are so proud of her! Her newest thing(which she absolutely loves to do)is to point to everyone in the room and say there name. "mama, daddy, kiki, etc." We do this over and over. Today she pointed to Gerard and said "Daddy". Then pointed to cousin Brandon(who she calls Bla) and said "Bla". I said what is your name to which she answered "Liley"( Even though she knows her alphabet and knows that her name starts with R, she still refers to herself as Liley.) She pointed to me and said "Mama". I asked her what's Mama's name? I think it caught her off guard, isn't your name mama? She thought about it for a minute and then EUREKA, she looked at me so matter a fact and said, Liley's Mama. It was precious and at school the kids,teachers, and other parents do call me Riley's Mom. I'm sure every parent goes through a time when they loose their identity. We are no longer(insert your name) we become (insert your child's name)'s Mama/Daddy. But I know there will come a day, and it won't be long, when I will no longer be called Riley's Mama because she will be grown, so for now, I will cherish each time someone calls me Riley/Liley's Mama.

Wordless Wednesday(Must Love Dogs!)

2009-11-18T09:44:00.003-06:00

wordless wednesday(clean-up)

2009-11-11T10:16:00.002-06:00

Fun at the fair

2009-11-08T20:36:00.003-06:00

Thanks to Granddaddy James, we had tickets to the State Fair of Louisiana, so we took Riley to the fair(her first time). She LOVED it! She loved the food, seeing the animals, and riding the rides. I wanted to ride the elephant, but she was a little too scared, maybe next year. I haven't posted in awhile so I thought I'd share pictures from the fair. Enjoy!

Clowning Around

2009-11-01T10:59:00.005-06:00

I hope that everyone, had a happy Halloween. I just wanted to share pictures of the cutest clown ever! We had a birthday party, and NO nap, so putting on the make-up and spraying the red hair was a challenge, but well worth it. She was a little grumpy and didn't want her picture taken so I don't have a lot, but I wanted to share the pictures I did get. ENJOY!

Storm Update

2009-10-30T11:35:00.002-05:00
Hey Everyone,
I just wanted to update ya'll. Severe weather came through our area last night. Several tornadoes touchdowned. We were without power from about 7:30pm Wed. til about 3:30am Thurs. Other than the power outage and a severly soggy yard, Gerard, Riley, and I, and our three dogs are fine. Because of all of the weather Riley's school is closed today, so there won't be any Halloween party pictures, however it is supposed to be sunny tomorrow so I will post Trick or Treating pictures.

Wordless Wednesday(Guitar Lessons)

2009-10-28T12:25:00.002-05:00

Franken-treats

2009-10-27T21:11:00.003-05:00

So, I am the room mother for Riley's class and even though I'm tired and don't have enough time, I decided to do something special for Halloween. Instead of relying on the store bought orange pumpkin cookies(which there is nothing wrong with, and I have done before) I'm making each child a Frankenstein twinkie. Yes, that's right, a twinkie with icing. Yummy! I'm gonna get them all sugared up and send them home. So, tonight I did a practice run, Riley got to eat the results. She approved, whole heartedly. I thought these pictures were too cute not to share.

Jim McCrery Scholarship Fund

2009-10-23T23:14:00.004-05:00

Earlier I blogged about the Jim McCrery Scholarship Fund. I am so honored that Senator McCrery endowed Goldman School with a scholarship. I recently received some pictures from the event so I thought I'd share with ya'll. As you can see, Riley was quite the charmer.

Wordless Wednesday(a look back)

2009-10-21T15:01:00.001-05:00

Extraordinary Everyday

2009-10-18T17:44:00.003-05:00
Riley and I went shopping today. She is becoming my best shopping partner. I love it when she tells me clothes are cute, or if she doesn't like something she tells me No mama, not cute. Today, like always, Riley was sitting in the buggy(cart for you non southerners)a lady came up and told her how beautiful she was. Riley never meets a stranger and was perfectly happy to converse with the woman. She told me that she had an adorable son, like Riley, then opened her wallet to show his picture. He was a precious little blonde boy with Down Syndrome. We talked awhile, I asked how old he was, she said he would be 27 years old(a year younger than me, but he passed away when he was 6 because he had heart complications and he had 4 surgeries in his short life. This is a very common issue for children with Downs. In fact 1 in 3 babies with Down Syndrome is born with a heart defect. It reminded me again how blessed we are that Riley has had no medical issues. And It also made me think how far medicine and the treatment of individuals with Down Syndrome has come. As the woman walked away she thanked me for letting her talk to Riley. Riley waved bye and blew a kiss, then as if she knew the woman needed more, she puckered up. The woman looked nervously at me not sure how to react, then leaned down and Riley kissed her gently on the cheek. Big tears rolled down her face and she said, "Riley you made my whole day!" I teared up, it was such an extraordinary moment in an everyday setting. I'm dedicating this blog to the memory of little "J" and all the babies like him who helped pave the way for better understanding and treatment for children like Riley.

DS Awarness Month Continued

2009-10-18T13:24:00.002-05:00
Second post for DS Awareness Month, MYTHS AND TRUTHS

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.
Truth: Most children with Down syndrome are born to women younger than 35-years-old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Down Syndrome Awareness Month

2009-10-17T21:01:00.002-05:00
As many of you know, October is Down Syndrome Awareness Month. To do my part I will be featuring blogs about Down Syndrome. Here's the first, DOWN SYNDROME FACTS:

* Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
* Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.
* There are more than 400,000 people living with Down syndrome in the United States.
* Down syndrome occurs in people of all races and economic levels.
* The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
* People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
* A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
* Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
* People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
* All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
* Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
* Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Wordless Wednesday(Puddle Jumping)

2009-10-14T09:13:00.002-05:00

King Papaw

2009-10-11T13:25:00.003-05:00

This weekend was the 34th annual Zwolle Tamale Fiesta. This year was extra special because my stepdad(Riley's Papaw & one of her favorite people in all the world) was King, we are so proud of him! Since his crowning Riley refuses to call him Papaw. He is now known as King Papaw and thats it. She gets very frustrated when you don't say it right. Riley really enjoyed spending time with all of our family and attending the fiesta. She went to her first parade, and LOVED it! I think by the time it was over she had eaten 6 lollipops. She also really enjoyed the carnival games and rides and the funnel cake! Here are a few pictures from our fun filled weekend. I guess if Papaw is king, that makes her a Princess(Something I've known since the day she was born!)

Color Coordinated

2009-10-06T19:15:00.002-05:00

Tonight, while I was washing dishes, I heard Riley playing with her baby. She's quite the little mommy. She loves taking care of her dolls. She lets them "eat" when she eats, they sit with her while she watches movies, she even spanks them sometimes. I heard her saying "Night Night, baby, Night Night with Mama". I looked into my living room and saw this seen. She had dragged her pillows off her bed, laid them on the floor and gone into the bathroom and gotten herself a green towel and her baby the matching washcloth.(Our bathroom has towels and washcloths in red, yellow, orange, green, and blue, So I was very impressed!)She tucked in her baby then laid down, covered up, and pretended to snore(Like daddy!) It was precious!

Riley's First Date

2009-10-03T10:00:00.004-05:00

I want to start this post by saying Riley and I are both very lucky to have such great friends. On Monday, Riley got devoured by ants at while playing on the playground at daycare. It was so severe that she had to go to the doctor and get a shot and some prescription cream. So, needless to say she was feeling yucky. Every day this week, family and a few special friends checked on her. my friend Rachel texted me throughout the day checking on her, and my friend Emily emailed me for updates on her. I really appreciate you guys' concern and uplifting words. Thank you, you are TERRIFIC friends. Emily's son Frankie goes to school with Riley, and they are good friends(if you ask Riley, "who is your boyfriend? she says Frankie")Frankie was missing Riley at school, so Emily and I got together and set up a dinner date at McDonald's on Thursday night.(Don't worry, both mommies were there, no unsupervised dates til she's at least 40!) I think the company and the ice cream helped Riley make a full recovery. She was back at school on Friday and happy as can be. I am including pictures from the "date".

Wordless Wednesday

2009-09-30T18:16:00.002-05:00

Seeing Ability in DisAbility

2009-09-29T12:51:00.003-05:00
I would like to share a video with you all.I'd like the whole world to see it. http://www.youtube.com/watch?v=ROWbyKVLYr8 This is a young man with Down Syndrome who started a charity benefiting people with Disabilities. It is only about 9 minutes long and I promise it is worth watching. He challenges people to see him first then his disability, or better yet, just see him. It is the way I hope people look at my Riley. Yes, she may do things in her own time and in her own way, but she WILL do many great things in her life. I can't wait to see all the things she accomplishes.

Squeaky Shoes

2009-09-26T17:19:00.006-05:00

I have done it, I have found the greatest invention for kids(and parents). They are called Squeak Me Shoes, and they are wonderful. I got Riley a LSU pair for her birthday and yesterday we put em to work. Not only are these shoes absolutely adorable,(they match her LSU tutu!!)but they work wonderful at burning off some of that unbridled childhood energy. Oh, If only I had her energy! During the game, I let Riley wear her new LSU tutu and her new shoes. They squeak when your child steps. Once on, Riley figured out that they shoes made noise and she was off. She squeaked up, she squeaked down, she ran in circles. It was a little annoying after awhile, I must admit, and her daddy was looking for earplugs but it wore her little but out! I sent her to her playroom, closed the door and let her squeak away. She was exhausted before long and we put the shoes away. The squeakers can easily be removed from the shoes, which I'm sure we will do, but today, they were magic for my little Tiger, and seeing her joy and hearing her laughter lifted my spirit and made me smile more than the squeaks irritated me.I tried to add a video but can't get it to work, so a picture will have to do. You can see the pure joy on her face. You can find the shoes in many styles and colors and even other teams(although LSU is the greatest, even if they didn't play so hot Sat. They did win!)at squeakmeshoes.com

2009-09-24T20:38:00.005-05:00

So I forgot to take my camera to Spaghetti Supper, but never fear, I have equally if not more cute pictures. After a her birthday party, we cleaned out and redid Riley's playroom so we could add all the new toys. I wanted it to be more functional and educational, as well as fun. I labeled everything so she could begin to learn to read words and so she would learn where everything goes. We revealed the newly redesigned room tonight. Punky loved it! Here are the pics of the room! And Here are pics of her playing with some of her birthday gifts!

2009-09-24T10:52:00.001-05:00
Sorry I missed Wordless Wednesday. Both Gerard and I had the stomach bug yesterday and felt miserable. Tonight is Back to School Nite/Spagetti Super at Riley's school. I will post pics I promise. Thanks for all the comments. Keep em coming.