My daughter is a Rebel

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

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

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)

Wordless Wednesday(Disney trip!)

Wordless Wednesday

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

I couldn't be prouder, my little reader!

Beatitudes for Disabled People by Majorie Chappell

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!

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

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)

Testing???

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!)

Back to School Night

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

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!)

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

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!)

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