31 for 21: Together

There are many things, some of which are small things, that O does which adds such a fun aspect to life. They are part of the blessing of having a child with Down syndrome.

O adds many different blessings to our life. Things that we take for granted, he is thrilled about. Things that may not be that exciting, like an every day chore, are always an exciting task. It's always good to be thankful for everything and joyful about things in life. O is a good reminder of that, because he is excited about so much.

Being in a large family, not everyone is doing everything together. If someone has errands to run in town, just a couple people may head to town. If someone is going on a walk or a run, just a couple may go on a run, etc. Whenever we do something where a lot of us are together, it's very exciting for O. And it makes it even neater that we are all doing it together.

A couple days ago just a few of us had to go to town, but once a few more things came up, several more people had things to do in town. So, it ended up being my mom, me, O and 4 others headed to town. We were all getting ready to go to town - brushing hair, changing clothes, getting shoes on, etc - when O found out that his 3 oldest sisters were going to town with him and mom, as well as his twin sister and one other sister.

Because O always likes to verify things to make sure he understands what is going on, he had to ask some questions. He stood there and asked "Da?" (which is what he calls me), I replied with "Yes", he then asked "Ghee?" (what he calls Ez), I said "Yes", He asked, "Seeya" (what he calls S), and I again replied with "Yes." He grabbed me and gave me a big hug while letting out an excited laugh and jumping up and down. It was so cute to see!

He does stuff like the above frequently when we're going outside to do chores, make something in the kitchen, etc. It's so fun to see and puts a smile on all of our faces :)!




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31 for 21: Team Makes Play for Down Syndrome Awareness

Team Makes Play for Down Syndrome Awareness Month

It was the fourth quarter and the Plainedge Bobcats football team was facing off against the Bethpage Eagles at John H. West Elementary School when 12-year-old Michael DiMarco ran the ball in for an 8-0 victory on Sunday.

While this scene could have played out in any peewee football matchup on a host of school fields across Long Island on any given Sunday, there was one detail that really got parents in the bleachers on their feet and cheering: DiMarco was making a guest appearance as a running back for just that one play for Down Syndrome Awareness Month.

DiMarco, wearing a red No. 48 Bobcats jersey specially made for him the night before, is a child with the genetic, chromosomal disorder. The Eagles, like the Bobcats, had been undefeated so far this season yet celebrated alongside DiMarco after letting him score.

“For the kids on the team to do something for someone like that made the whole day really special,” DiMarco’s father, Vincent, said after the game.

One in every 691 babies is born with Down syndrome and there are more than 400,000 people living with Down syndrome in the US, according to the National Down Syndrome Society.

Mikey, as his fans affectionately call him, regularly watches his 9-year-old brother, Vincent Jr., practice his drills as a defensive tackle after school where he is in 4th grade. This Sunday, little Vinny stood in as quarterback for the last play of the game when he handed off the ball to his big brother. The Bobcats scored a safety earlier in the game.

“We gave him the game ball,” John Petrucci, the Bobcats’ head coach, later told the Press from the sidelines. “He’ll have a smile on his face for the rest of his life.”



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31 for 21: Wordless Wednesday "Counting Down The Days"

Counting down the days until Granny arrives....

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31 for 21: Expectations

I thought I would share a few articles from our book over the course of the month. One article in the first section of the book is written by Jenny Marrs. She's the mom of a teenage boy with DS. She has done a lot of work for kids with DS, but especially her son and pushing to his highest potential. She is well known (especially by the "old-timers" on there) on the Einstein-Syndrome list.

Expectations
By Jenny Marrs

John is 13 years old and has Trisomy 21 Down syndrome.  He took his first steps at 13 months, and began reading at 2 ½.  He knew all the alphabet and numbers by age 3, and was fully potty trained before his 3rd birthday.  Prior to Kindergarten, John was tested in word recognition to be at a first grade 6th month level.  In Math, he tested at a Kindergarten 6th month level.  Today he continues to excel in a regular 7th grade classroom doing the same work as his peers.

John is not the only child with Down syndrome achieving such accomplishments within typical time frames.  John is merely doing the things all children with Trisomy 21 are capable of accomplishing—provided they have not acquired medical or other complications which could affect learning capabilities.  Some complications that could affect learning capabilities are untreated thyroid, hearing or vision disorders, autism, brain damage, attention deficit, fetal alcohol syndrome or constant upper respiratory infections.   I do not believe that there exists a range of functioning in persons with Down syndrome merely due to the 47th chromosome.  I believe every child with Down syndrome is capable of reaching for the stars.  It is crucial that parents believe this, and then help their children to achieve this goal.

For the most part, in today’s world, I do not see a society that believes in what the child with Down syndrome can do.  The available information is outdated and there is an abundance of old stereotypes and misconceptions among professionals---professionals who should know better.  Parents have a hard job helping their child reach for the stars because they go against what most educated professionals think and say.  I began this journey by thinking that John would teach THEM and that we would be opening some eyes.  Some have been opening, but very, very slowly.  In general, rather than give John the credit for his hard work, most just like to shrug and say, “He’s high functioning Down syndrome.”   In reality, John’s function is a reflection of the opportunities he has been given and the hard work he has done. 

I think the biggest burden on our children today is the many labels put on them, beginning with “Down syndrome”.  In 1865, Langdon Down observed these children and made a list of symptoms that he felt made them different from other children. The word “syndrome” is defined as “a list of symptoms”.   Because of this list made in the year 1865, our children are burdened at birth with this label and list.  This label/list is why many people look at John but can’t see the child.  This is why some of his past doctors were willing to accept illness for him, and it didn’t even occur to them to attempt wellness.  This is also why most of society has so many misconceptions about Trisomy 21.  Down syndrome is a label that suggests symptoms that may or may not be there; symptoms that CAN be addressed and for the most part eliminated.

John has a medical diagnosis of Trisomy 21.  Research tells us that there are metabolic issues we need to address to prevent the extra chromosome from wreaking havoc on John’s system.  We address this issue.  However, John does not now carry nor will he ever carry labels designed to hold him back.  We know his many strengths as well as his weaknesses.  This allows us to address each issue as it pertains to John.  Not as it pertains to an entire segment of the population.  Not as it pertains to a study, and not based on past performances of various children in various situations.  Just John. 

Another injustice to our children is the developmental chart suggesting almost everything will be later.  Buy into that thinking, and everything is almost certain to be later.  Because of low muscle tone, John did need more help to accomplish gross motor milestones, but we did accomplish them in a typical time frame.  I believe in the importance of the “windows of opportunity”, and I believe those windows are the same in all children.  I believe that the child who develops within those windows of opportunity has an edge.  The professionals that I first looked to for guidance, my doctor, therapists, and Early Intervention providers, all accepted the “special” charts, and did not strive for a normal development.  Normal development would not, in most of society’s eyes, be realistic.  “Reality” to them was that John had Down syndrome, and their education and experience had taught them to expect less.  My reality and experience tells me that if you expect less then less is exactly what you will get! 

Because of low expectations, professionals are stifling our children’s potentials.  It begins at birth and continues throughout our children’s lifetimes.  As it turns out, the child fulfills all of those dire predictions, not because that was his potential, but because he was educationally deprived by a very archaic system.

Granted, society has come a long way from the days when the child with Trisomy 21 was institutionalized, but we haven’t come nearly far enough.  We have advocate groups whose goals are to have society accept our children’s disability.  Society is much TOO willing to accept disability.  I not only want society to see John, I want society to see John’s potential.  Just look at the list of symptoms that a child with Down syndrome is expected to have.  Next look at the description of Down syndrome in the American Medical Association medical book.  These do not describe my child.  This tells me that we have a long way to go.  These are examples of society’s opinions.  This is what is taught to our future professionals.  This is how they view Trisomy 21.  I will not put my child’s health or educational welfare in “society’s” hands.  “I will not let his schooling interfere with his education.”  (Mark Twain)

I am tired of seeing television shows that are intended to make people feel all warm and fuzzy because they accept individuals with Down syndrome and their so-called disability.  I want to see television programs that concentrate on ability, and will educate the public about our children’s true potential.  When John was an infant, care providers leant me a video portraying a child with Trisomy 21 who was included in a typical classroom.  Instead of focusing on a child beginning his school career, this video takes an older child who has been educationally deprived and who lacks discipline, and then follows him through the school year.  The truth is, the child with Trisomy 21 is capable of learning at an equal or above average rate.  Why do we accept educational deprivation for the child with Trisomy 21? 

I think most children with Trisomy 21 display signs of having difficulties with speech, and this makes it all the more difficult for people to see their potential.  This speech delay, coupled with society’s misconceptions, leads to greater misunderstandings.  If a child has a hard time presenting his knowledge through speech, it is hard for anyone to grasp how smart he is.  John had a very large vocabulary when he entered Kindergarten, but he had a hard time making sentences.   He was not confident with speaking, so he spoke very little.  Naturally, people made incorrect assumptions and judgments based on this child with a speech delay, and a label of Down syndrome.  When I told people of John’s reading capabilities, it was as if their eyes would glaze over.  They smiled.  They were polite.  Finally, they changed the subject.  I found that I needed to make videos for these people, or provide the opportunity for John to prove his capabilities in person.  Then the mouths would drop open, and they would ask, “How did he do that?” 

My heart goes out to the many children who have suffered because of society’s misconceptions.  These children have such wisdom to share and yet are unable to because they have a speech difficulty, and because society has a listening disability.  These children know that we are stifling their potential.  They know so much more than we can even grasp, possibly because they are content to be silent and listen, which is the avenue to true wisdom.

We need to believe what these children can do; we need to help them achieve their potential.  Remember, the syndrome doesn’t have to happen.  When society sees the extra that is in these wonderful children, they will perhaps change their tendencies to labels that predict doom.  Perhaps an amniocentesis that suggests Trisomy 21 won’t be seen as an opportunity to make a choice.  Rather, this child will be seen as the gift that he is; a child with more, not less; a child who will teach us more than we will ever dream of teaching him.  This child touches the heart in a very special way, and has a profound message for those who have the wisdom to listen.




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31 for 21: Results of Survey by Dr. Brian Skotko

Dr. Brian Skotko has a sister with Down syndrome. He has done a lot of research and work for and with families and people with Down syndrome. Results of a recent study of his are below.
 

Down Syndrome Brings Joy, Not Regrets, for Many Families

Survey finds people living with those who have the disorder have been enriched by the experience

By Amanda Gardner
HealthDay Reporter

FRIDAY, Sept. 30 (HealthDay News) -- Louise Borke learned that her infant son had Down Syndrome when he was just a few days old.

Her reaction? "Shock and surprise, trepidation and anxiety," she recalls.

Today, 22 years later, Borke can look back at life with her son, Louis Sciuto, and say, "It's been fun. It's had its challenges -- I won't deny that -- but it's been fun. It's been rewarding and I have no regrets."

Borke is not alone in her views.

In a series of recently completed surveys, 96 percent of parents expressed no regrets about having a child with Down Syndrome and nearly eight out of 10 said the child had enhanced their lives by teaching them patience, acceptance and flexibility, among other things.

Siblings had similar feelings, with 94 percent feeling "pride" about their sibling and 88 percent saying the sibling had made them a "better person."

And virtually all people with Down Syndrome who were queried said they were happy with their lives and liked who they are.

"The voices we heard were very satisfied and very positive about their lives despite the fact that they have real challenges," said Dr. Brian Skotko, who conducted the surveys, which appear in the October issue of the American Journal of Medical Genetics.

Skotko, a physician with the Down Syndrome Program at Children's Hospital Boston, hopes the results will help families make decisions regarding their unborn babies, especially as prenatal tests become more widely available.

Right now, prenatal tests for Down Syndrome run the risk of miscarriage and only about 2 percent of women actually get tested.

But new, virtually risk-free blood tests are about to hit the market and Skotko wanted to make sure that parents grappling with this "complex, sensitive, difficult decision" had good information to go by.

No one knows exactly how many women who learn their baby will have Down Syndrome through prenatal testing opt to terminate their pregnancies. But small, selected studies suggest the numbers could be as high as 80 percent to 90 percent.

"Once everyone has the opportunity to learn prenatally with a simple blood test, what decisions will Americans make about pregnancies and will babies with Down Syndrome slowly start to disappear?" said Skotko. "People with Down Syndrome should be able to describe for Americans what it means to have the condition."

Julie Cevallos, vice president of marketing for the National Down Syndrome Society (NDSS), said, "This research is a great new development. What's particularly exciting is that you're hearing from families and siblings and self-advocates directly.

"The more information and the more accurate information coming straight from families [the better]. Sometimes there's inaccurate information out there, or just stereotypes," added Cevallos, who's 2-year-old daughter, Nina, has Down Syndrome.

Skotko, who is an NDSS board member, has a 32-year-old sister who has Down Syndrome. "She has an active and robust social life, more than I ever had," she related.

As for Louis Sciuto, Borke said that he has just landed a job at Target and also has an active social live, keeping up with the latest movies, playing sports and double-dating with friends.

What would she tell parents who have learned their child may have Down Syndrome? "I would tell them don't be afraid. It's different but it's not worse. Louis has had friends whose parents have told me that they believe their children are better people for having known Louis."




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31 for 21: What Is Down Syndrome?

I haven't ever really posted anything about this on the blog before, so I thought it would be good to post. It seems so basic to those us involved with Down Syndrome, but a lot of people are totally clueless when it comes to what Down Syndrome is caused by.

Here's some basic information shared from the National Association for Down Syndrome:

Down syndrome is a genetic condition that causes delays in physical and intellectual development. It occurs in one in every 691 live births. Individuals with Down syndrome have 47 chromosomes instead of the usual 46. It is the most frequently occurring chromosomal disorder. Down syndrome is not related to race, nationality, religion or socioeconomic status. The most important fact to know about individuals with Down syndrome is that they are more like others than they are different.

Down syndrome is usually identified at birth or shortly thereafter. Initially the diagnosis is based on physical characteristics that are commonly seen in babies with Down syndrome. These include low muscle tone, a single crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. The diagnosis must be confirmed by a chromosome study (karyotype). A karyotype provides a visual display of the chromosomes grouped by their size, number and shape. Chromosomes may be studied by examining blood or tissue cells.

Down syndrome is usually caused by an error in cell division called nondisjunction. It is not known why this occurs. However, it is known that the error occurs at conception and is not related to anything the mother did during pregnancy. It has been known for some time that the incidence of Down syndrome increases with advancing maternal age. However, 80% of children with Down syndrome are born to women under 35 years of age.

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31 for 21: It's October (already)!

Wow, it's hard to believe it's already October 2011. The year has gone by so fast. But, with October comes National Down Syndrome Awareness Month (and also a whole host of other "such and such awareness month", but we aren't focusing on that!).

As I mentioned before and as we did last year, we are taking on the 31 for 21 blog challenge. The goal is to post a blog a day for the month (31) of October, because of Trisomy 21.

Head on over to Unringing The Bell, sign up for the challenge and grab the button. If you happen to miss a day, that's okay. It's a challenge, but is a lot of fun and quite rewarding. It spreads the word about people with DS and I've gotten a lot of emails and comments doing this.

There You Are
by Robbin Lyons

There you are.
What will you become?
And here I am
Feeling overcome
And they say
You’ll struggle thru your days
Oh, what will you become,
My precious little one?
And there you are,
So different from the rest.
And here am I,
Felling I’ve been blest.
Each day is new.
Each day a test.
But, we get through,
No different from the rest.
And there you are.
Looking almost grown.
And here am I,
Welcoming you home.
I never knew,
You’d make it on your own.
You really found your way
And never once afraid.
And there you are,
So different from the rest.
And here am I,
Feeling I’ve been blest.
Each day is new.
Each day a test.
But, we get through,
No different from the rest.
And there you are
No different from the rest.
And here am I
How was I so blest?
You’ve made my life
No ordinary path
So different from the rest.
I know that I was blest.
You’ve made my life
No ordinary path
So different from the rest.
Thank God,
I truly have been ….BLEST

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October is almost here....the 31 for 21 Blog Challenge!

October is National Down Syndrome Awareness Month and it's right around the corner! And with that comes the 5th annual 31 for 21 blog challenge hosted by Unringing The Bell. The goal is to post a blog a day for the whole month of October to increase awareness about Down Syndrome.

The posts don't have to be related to DS, but of course that's a plus :). So, I've been planning posts that I can do in October. Hopefully we can keep it informative and interesting! Posts with recipes, pictures, guest bloggers and lots more :).

Unringing The Bell will put a more detailed post up with the linky to put your blog on and also the grab-button to put on your blog to show you are participating in it.

I am looking for a few folks who would be willing to write a guest post for our blog. It can be any number of topics on DS....if you have an idea, shoot me an email (qf {at} gotdownsyndrome {dot} net) or leave a comment here and I will let you know if I think that will be a good topic and we can go from there.

If you're on twitter, you can use the hashtag #31for21! Hopefully you'll see a lot of posts under that hashtag!



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Girl with DS Crowned Homecoming Queen

Girl with Down syndrome crowned homecoming queen  

LIBERTY COUNTY, Texas—Becoming homecoming queen is a dream for many high school girls. But at Tarkington High School in Liberty County, some girls in the running worked to make sure one particular student was crowned.

A total of four students were vying to become the school’s homecoming queen, but they told their supporters to vote for Sydney Bloom. The 18-year-old student has Down syndrome.

It was an act of kindness and beauty, according to the school principal.

“The kids have grown up together, lived in the community together and this is a natural outpouring of their love and their sentiment for a fellow student”, said Jim Hair.

In the hours leading up to the school’s homecoming game on Friday, all eyes were on Bloom. She was named queen later in the night.

Meanwhile, Bloom’s mother said their family was overwhelmed when hearing about the news. Her mother could barely hold back tears of joy as she talked about her young daughter who’s conquered enormous obstacles to make it to where she is.

“It’s the time of her life, she gets to be the princess, so it’s the time of her life,” said Karen Blum. “All of these students, all these four girls, they deserve to be queen. They are the most regal queens of all.”






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Gymnast with Down Syndrome

Gymnast refuses to be grounded by Down syndrome

Chelsea Werner is far more than just a gymnast with Down syndrome. The 19-year-old Danville resident is the kind of athlete who inspires others to greatness and challenges the perceptions of possibility.

"If more parents could see what Chelsea could do, I think they'd realize their kids could do so much more than anyone gives them credit for," said Werner's mom, Lisa Werner.

Chelsea Werner wasn't supposed to develop the necessary physical attributes. She wasn't supposed to get past the most rudimentary level of artistic gymnastics. She wasn't supposed to show the persistence needed to stick with such a rigorous sport.

Now Werner has one national championship to her credit and is in England this weekend trying to add an international title. Victory or not, a winning message will be on display for those paying attention.

"I feel like a star," Werner said.

Now more than a decade into her pursuit, Werner isn't just dabbling in gymnastics as a recreational outlet. She is a real athlete with real muscle tone -- and a real competitive drive. (The YouTube footage doesn't lie.) Though it has taken her longer, Werner has nonetheless climbed to a stage that most gymnasts never reach.

"A lot of people know Chelsea's been doing gymnastics for 10 years or so," Lisa Werner said. "But they're always surprised when they see videos of what she's capable of doing because I guess it's pretty rare."

Chelsea's coach, Dawn Pombo, could
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see the potential early on. But even she is surprised by the way Werner has rewritten the book on what's conceivable for Down syndrome children in sports. She is doing routines that other kids with Down syndrome simply don't attempt.

"She has exceeded my expectations 10 times over," Pombo said. "I don't think of her as special. I know she is, but I don't treat it that way. I just believe she can do it."

Werner is an accomplished gymnast who has worked her way up through the ranks at a mainstream gymnastics facility called Gymfinity in Livermore. She does it all: vault, balance beam, even a floor exercise replete with back flips.

Her achievements are all the more remarkable in that Special Olympics of Northern California dropped its gymnastics program five years ago. Since Werner receives no financial support from Special Olympics, her father, Ray Werner, established a nonprofit organization -- Chelsea's Quest To Be The Best -- to help defray her travel and training expenses.

Nonetheless, as a one-person team competing in her first national Special Olympics event, Werner ventured to Marietta, Ga., in May and bounced away with the all-around gymnastics championship. A longtime coach who saw her told the Werners and Pombo that Werner would have blown away the competition at the quadrennial Special Olympics World Games in Athens, Greece, in late June.

To gauge just how talented she might be on a world stage, Werner will participate in the Down syndrome International Gymnastics Championships on Sunday in Leicester, England. As always, she will surely be flashing her infectious smile during routines.

"I call her 'Showtime,' " said Ray Werner. "She just loves performing for people."

Perhaps it was a blessing that Chelsea wasn't coached through a Special Olympics gymnastics program. By enrolling in Gymfinity's open program when she was 8, she was pushed a little harder than she might have been otherwise. It was difficult at first, but Werner was paired with Pombo, a coach who had never before worked with a special-needs child, so she didn't have preconceived notions.

Pombo eventually found a high degree of persistence and passion inside Werner, latched onto it and extracted something beautiful and uplifting.

"You can ask any coach in this gym, I was afraid at first," Pombo said. "I couldn't understand her. I didn't know how much she understood me. And after working on something, she'd want to go sit down, or she'd complain that her stomach hurt and go hide in the bathroom."

Once Pombo could hold her attention, Werner quickly advanced beyond the most basic levels and was doing intermediate work after the first year. She reached the highest level Special Olympics recognizes in her midteens and has been doing advanced skills the past few years.

She may soon start pushing even further through a program called Excel, which is open to older female gymnasts who don't want to put in 50 hours a week but still desire to keep their skills sharp.

Werner practices for three hours, four times a week and often doesn't want to leave. While her verbal skills are still limited, she has no problems communicating with Pombo as the routines become more difficult to teach. Even her parents are amazed that she just keeps advancing.

Lisa said her daughter has to put in as much as 40 times the work most gymnasts must do to master a maneuver, but her work ethic is relentless.

"I told her mom she could probably do this until she's 30 if she wants it," Pombo said. "She probably will, because it's so good for her. And I don't see many kids who want it as badly as she does."

The Werners believe Pombo's tough-love approach with their daughter is a big key to that.

"I love that she treats Chelsea like the rest of the kids," Ray said. "She gets yelled at if she needs to be. Every now and then I'll see a new parent's face when Dawn yells across the gym, 'Chelsea, get your butt over here!' The parent will look at me with an expression that says, 'Oh my god, she's picking on a poor little Down syndrome kid' and I just start laughing. Chelsea doesn't take it personally at all."

The Werners also have done as much as they can to give Chelsea a normal, happy and active life. She attended San Ramon Valley High in Danville and was on the cheerleading squad. She remains at the school in an extended learning program. She serves as an honorary member of the Cal women's gymnastics team and performs exhibitions at Haas Pavilion and elsewhere.

Werner also has traveled extensively, including an unplanned excursion last year to Buenos Aires. A Special Olympics filmmaker, Ignacio Villanueva, saw footage of her gymnastics skill and paid for her, her mother and Pombo to fly to Argentina to take part in an international Special Olympics commercial.

Werner's best memory of that experience?

"I learned the tango," she said, grinning.

But behind that grin lies a true competitor -- not to mention a true champion for possibility.

"I don't know what drives her," Pombo said. "She's just a go-getter."






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