Splish Splash - Taking A Bath

One of the most common challenges people who have Down syndrome face is something called hypotonia.  According to the National Down Syndrome Society, it is reduced muscle tone that occurs in virtually all infants with Down syndrome.  The NDSS goes on to explain that the muscle weakness can range from mild to moderate to severe and that common hypotonic symptoms include a lagging head when the child is sitting and an arching back when being carried or lying on their stomach.  Hyptonic children will also tire more easily and will adopt movement patterns that require the least expenditure of energy.  


The crazy thing about Joey is that physically he seems very strong.  However, despite seeming so strong, he has pretty severe hypotonia.  Sometimes it is hard to see similarly aged children who have Down syndrome who are already crawling, pulling themselves up and some are even walking.  I work really, really hard on not comparing Joey to where Tommy was at his age, where my friends' kids are at his age or even where other kids who have Down syndrome are at his age.  It's unfair to him, to us and to everyone else.  Instead, we buckle down and keep working hard at every little victory and milestone.  I think the reason it makes me sad sometimes is because I want him to feel that independence of exploring and pulling up on things.  I want him to see the world from the standing position because his nystagmus makes his little eyes jitter like crazy when he is trying to crawl and see.  


One of the challenges with the low muscle tone has been bath time.  Bath time should be fun!  We want him to be able to explore his world, work his muscles in all different directions and enjoy himself.  In the process of trying to make his bath time more enjoyable we are trying out some different options.  Here is Option One-- The Dream Baby Seat.  This one is awesome because Joey is sitting up and his eyes are steady and he can't aspirate any water.  It makes bathing pretty easy, but it's still kind of tough to get everything washed up.  It does make washing his hair really easy and he is a big fan!

Option 2 is one we borrowed from a friend.  It's by Swimava and is really cool, but it's a little bit small, so we've also purchased one from Water Way Babies.  We also purchased a "pool" from Water Way Babies and are going to be trying that out this week.  For now we've been using the swim collar from Swimava in the tub.  He really likes being able to wiggle around, but with the swim collar it is tough to keep him from aspirating water in the tub.  Somehow he manages to get water caught up around his neck and then he ends up swallowing and choking on it.  We are working on perfecting the swim collar usage.  

Bro-- what is going on here?

Up on my knees!

Mom-- stop torturing Joey!

Two Awesome Giveaways!!!


Any comments up until Friday, February 10, 2012 will be entered in our giveaway of a pair of awesome Stonz Booties.  


This week we are also giving a way a Foursome to the Wayne Homes Chili Open, which benefits the Akron Rotary Camp for children with special needs.


The Rules


1)  To be entered to win a pair of Stonz Booties, just leave a comment anytime today through Friday, February 10, 2012.  Every comment is an entry.


2)  To be entered to win a Foursome for the Arctic Golf at the 2012 Wayne Homes Chili Open, leave a comment anytime before this Thursday, February 2nd about your favorite summer camp experience or about whether or not you'll send your kids to summer camp.  That winner will be announced on Thursday.


Good luck!!!!

Stonz Booties - Cowgirl Up! Giveaway

If you have visited us at Cowgirl Up! before, you may have noticed we've had a bit of a "makeover".  In celebration of the new look, I am super, super excited to announce that we are going to be having a Stonz Booties Giveaway!!!  Stonz has been kind enough to provide one free pair of Stonz Booties to a lucky Cowgirl Up! reader.  


Every reader who leaves a comment on the blog from today through February 10 will be entered into a random drawing.  Every comment counts as one entry.  The winner will receive a pair of Stonz Booties!


Stonz booties are made in Canada and they were created by a mom, Lisa, who's favorite quote is "There is no such thing as bad weather; only inappropriate clothing."


Not only do they offer awesome booties, but they also have liners, mittens and hats.  

Visit Stonz on Facebook.


Right now they are also offering one free hat of your choice when you buy any two items.





We hope you enjoy the new look of Cowgirl Up! and best of luck to all the awesome readers in the hopes that you will win a fabulous pair of Stonz booties!


This week we are also giving a way a Foursome to the Wayne Homes Chili Open, which benefits the Akron Rotary Camp for children with special needs.


The Rules


1)  To be entered to win a pair of Stonz Booties, just leave a comment anytime today through Friday, February 10, 2012.  Every comment is an entry.


2)  To be entered to win a Foursome for the Arctic Golf at the 2012 Wayne Homes Chili Open, leave a comment anytime before this Thursday, February 2nd about your favorite summer camp experience or about whether or not you'll send your kids to summer camp.  That winner will be announced on Thursday.


Good luck!!!!

Change, Giveaways and A New Blog- The R-Word Reporter

Change
Change is good!  Change is hard.  For almost one year Cowgirl Up! has been in existence and I got a little hitch in my giddy up because I decided we needed a new look.  I find change really, really hard, but I'm also really, really decisive and once something is decided, well, that's it.  So here we are!  After emails going back and forth and back and forth for a few weeks, we finally settled on the new look.  Little Blue Deer was amazing to work with and I'm so, so excited for our Cowgirl Up! makeover.


Giveaways
In honor of the new look of Cowgirl Up! I am having not one, but TWO awesome giveaways over the next two weeks!


The first giveaway is a foursome to the 2012 Wayne Homes Chili Open Golf Classic on Saturday, February 4, 2012.  The Chili Open raises funds so children with special needs can go to the Rotary Club of Akron's summer camp.  To be entered, just leave a comment with your favorite summer camp or summer memory.  A random winner will be drawn on Thursday, February 2nd!


The second giveaway will be announced on Monday, January 30th.  I will give one hint. 


A New Blog: The R-Word Reporter
Finally!  In the past year I have started to really notice the use of the R-word in movies and television shows.  I get especially upset when my husband and I have paid for a movie ticket and the movie is ruined when I hear it used.  I can't help it.  I'm not very understanding of the use of the R-word in a film.  In an effort to help provide accurate and fair reporting of such instances and in an effort to help petition the world to recognize what they say and that they have the option to stop saying it, I just launched The R-Word Reporter.


A Week in Instagram
Have a wonderful weekend!!!

A Chance To Go To Summer Camp

Did you ever go to summer camp as a kid?   Swim in a lake during the day.  Share a bunk with new and old friends.  Explore the woods.  Make s'mores and tell stories around a big campfire.   I'm literally singing "Summer Lovin'" in my head right at this moment just thinking about all the fun that occurs at summer camp. 

When you have a child who is born with a disability, you sometimes wonder if your baby will ever have those kinds of memories.  Will they ever have the chance to escape to the woods and create lasting summer memories and friendships?  Will there be people who can both help them with any medical equipment or needs and yet also help them fit in despite any obstacles?  


Fortunately, for both Joey and us, we have an incredible Rotary Camp for Children with Special Needs right here in Akron, Ohio.


What does Extreme Arctic Golf have to do with summer camp?  Everything!


On Saturday, February 4, 2012, nearly 1,000 polar bear golfers will converge on the scenic Hale Farm and Village in Bath, Ohio for an arctic golf experience at the Wayne Homes Chili Open.  On that date, the grounds of Hale Farm will be transformed into seven golf courses with nine holes on each course.  Golfers will be challenged to drive shots across tundra and putt balls laden with ice. There will be awards for closest-to-the pin and hole-in-one.  


The best part about participating in the 2012 Wayne Homes Chili Open Golf Classic is that you will help more than 1,600 children and adults with disabilities attend the Rotary camp next summer!  


Let me repeat that--1600 campers with special needs will be sponsored by the Rotary Club of Akron to attend camp in the summer of 2012.  That's a lot of happy campers!


For more than 88 years, the Rotary Club of Akron has sponsored the Rotary camp.  Children with special needs throughout Ohio have been invited to spend a week at camp where they enjoy many traditional activities including swimming, canoeing, arts and crafts, sports and games, team building and more in a convenient and natural setting.  When campers leave Rotary camp at the end of each session, they not only leave with lifelong memories and friends, but they often show more independence as well as a greater understanding of themselves and their abilities.  For more information about the Akron Rotary Camp, please call the camp office at 330.644.4512.  


If you would like to donate to the 2012 Wayne Homes Chili Open Golf Classic, click here.


If you would like to register a foursome for the 2012 Wayne Homes Chili Open Golf Classic, click here

FOURSOME GIVEAWAY
If you would like to be entered for a chance for a FREE FOURSOME  for the 2012 Wayne Homes Chili Open Golf Classic, leave a comment with your favorite summer camp or summer memory.  A random winner will be drawn on Thursday, February 2nd!


Thank you Rotary Club of Akron for making summer camp a dream come true to so many!  


Good Luck!!!!   

A Smile As Big As The Moon - Sunday, January 29, 2012 9/8c

This Sunday, January 29, 2012, Hallmark Hall of Fame will present A Smile As Big As The Moon on ABC at 9/8c.  John Corbett (LOVED him as Aidan on Sex and the City) plays Mike Kersjes, a Michigan high school football coach and special-education teacher, who helps his special-ed students achieve their seemingly impossible dream--to attend Space Camp at the U.S. Space & Rocket Center in Huntsville, Alabama.  Their journey, which is based on a true story, is the basis for A Smile as Big as the Moon.  


What is especially wonderful about this movie is that many of the special-ed students are played by actors who have real special needs including Down syndrome, ADD, autism, dyslexia and Tourrette's syndrome. 

John Corbett and Peter ten Brink

From MIB: Make it Better

Peter ten Brink has been a fixture on the North Shore theater scene since he began acting at age 8.

But now, a national audience will get to know the New Trier High School teen when he appears in the Hallmark Hall of Fame movie “A Smile as Big as the Moon,” airing Jan. 29 on ABC.

Ten Brink plays Ben Schmidt, a high school student with Down syndrome who dreams of someday becoming an astronaut. His teacher, Mike Kersjes (played by John Corbett of "Sex and the City" and "My Big Fat Greek Wedding" fame) is inspired by Ben’s dreams to try to get his class of special education students accepted into NASA’s Space Camp. The movie is based on a true-life account by Kersjes, who wrote a memoir of the same name.

The role came to ten Brink’s attention through the Down Syndrome Association of Los Angeles, which keeps a file of actors with Down syndrome. After finding out he was up for consideration, he took a whirlwind trip to North Carolina around Labor Day to audition. He got the call offering him the part, ten Brink said, while at McDonald’s “waiting for my Chicken Selects.”

“Ben Schmidt had Down syndrome like me. The character wants to go to Space Camp … but Space Camp is really for gifted children, not special needs,” ten Brink said. The story follows the struggles and triumphs of the class as they work toward their goal against all odds.

Ten Brink previously played the lead role in the independent short film “By Any Other Name” and also has a part in the upcoming feature length project “Nightlights,” both by Play On Productions. He got his start acting with Special Gifts Theatre, a Northbrook-based company that features actors with special needs.

He began working with New Trier’s Theatre program while he was still in junior high, landing a role in the school’s production of “The Music Man,” and has participated in New Trier Theatre classes throughout high school.

“Peter ten Brink has been very involved in our Theatre Workshop and Theatre 2: Acting courses,” said New Trier Performing Arts Coordinator Anne James-Noonan. “He is passionate about acting and has been an enthusiastic scene partner to many of our New Trier Theatre students.”

New Trier Theatre teacher Hilerre Kirsch said she has enjoyed ten Brink’s contributions to her classes.

“Peter’s passion for theatre was evident the first time I met him!” Kirsch said. “He was clearly serious about his acting and became a leader in his classes, offering advice and comments that were appreciated by his classmates.”

We can't wait to make some popcorn and watch this movie as a family on Sunday night!

Our Fragile Emissary

This was posted on one of our favorite blogs-- With a Little Moxie yesterday and Meriah said it was okay to re-post here.  We find inspiration and smiles at With a Little Moxie on most days.  Hope you enjoy this beautiful poem as well.


Our Fragile Emissary
by Nancy Tupper Ling


With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre-pain.


Blonde beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And our young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.


With such stinging receptions,
we long to shelter you,
surround you; keep your 
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.


It reminds me so much of Joey if you changed "words dropped loosely at extra-chromosomed girls" to "boys." 


My favorite line is "Instead, we hold you up, for others to see; let you, our fragile emissary speak to an imperfect world."  I LOVE this line.  It is what we do.  What so many, many families do who are out there advocating and educating.  We hold our babies and our children up for the world to see that love does not count chromosomes.  

Forward Motion - Directed by: Tommy

I was trying to get Joey's Army crawling on video when Tommy took over.  I think he did a much better job. . .


Be warned that if you get motion sick, this might not be the video for you.

My version. . .

A Week In An Instagram - and Stonz Booties

The little booties that Joey has on are called Stonz Booties-- a company out of Canada.  His cousin had a pair and they looked so cute I had to get him some.  You can wear them over shoes and with or without the liner.

They also have amazing mittens that completely stay on.  I bought mittens for both boys.

2 for 2 - Raising Awareness for Down Syndrome

If you haven't already visited her beautiful blog-- be prepared for a treat of amazing photos and two gorgeous little girls, Nella and Lainey.  They greatly remind me of my own two boys, Joey and Tommy.  Kelle Hampton's blog-- Enjoying the Small Things was the first place I found a story about having a baby who had Down syndrome.  It was only a month or so after finding out that our son, Joey, would be born with an extra chromosome that I stumbled across her posting called: Nella Cordelia: A Birth Story.  We were on a family trip to Hilton Head.  It was our first trip with just Tom, Tommy and I.  Our little family of three plus one in the oven.  The diagnosis was still fresh and we were still confused, scared and grieving about finding out our second son had an extra chromosome.  I was about 23 weeks pregnant and spent each night searching the internet for hope, words of wisdom and answers.  


I remember finding Nella Cordelia: A Birth Story and as I read it, tears streamed down my face as I silently cried and cried and cried.  I took the laptop over to my husband and said, "See-- it's going to be okay.  We aren't the only ones."  I found such comfort in Kelle's post about Nella's birth.  I took notes and decided that our baby boy's birth would also be a celebration complete with champagne and favors for all the family and friends who were there.  


This year, the Hampton family is trying to help raise $200,000 for the National Down Syndrome Society.  Last year they raised over $100,000.  "The National Down Syndrome Society has been dedicated to making a marked difference for people with Down syndrome since 1979. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities."


If you would like to contribute to the 2 for 2 campaign (Joey is also turning 2 this year, so I'm donating in honor of him!), you can visit here.


In the meantime, I just want to thank the Hampton family for helping spread awareness, acceptance and understanding for the thousands of people who read their blog.  I am also grateful to them for putting their story out there and for helping me and other families.  


Cheers! 

What Does a Kidney Transplant Have to do With "Mental Retardation?" Everything.

Part of becoming a mommy to a son who has an extra chromosome has been learning that many in the medical field consider him to be "mentally retarded".  It is not a judgment.  It is not a statement of any sort.  It is a medical term.  As I often discuss on Cowgirl Up!, the phrase "retarded" has become part of society's rhetoric and is often used to describe someone in a derogatory or demeaning manner.  To say someone is "retarded" is to say they are slow, not mentally sufficient and intellectually deficient.  As I have mentioned over and over it is a cruel word that many of us (myself included) used to use off-handedly to describe ourselves or our actions.  We used it and didn't think twice about associating it with Joey or other people who have disabilities.  Part of the goal of Cowgirl Up! is to remind people that this word should no longer be socially acceptable.  That, similar to "nigger" and "faggot",  "retard" is a word that is used only to be cruel and demeaning and should be removed from our every day vernacular.  


Another part of being a mommy to a son who has Down syndrome is understanding the medical jargon and learning how to fill out the forms.  Most doctor visits, whether to the cardiologist, the opthamologist or the endocrinologist involve filling out some form.  A form that asks about Joey's health history.  With our first son, Tommy, those forms were a breeze.  Tommy was born via c-section (two weeks late!), has no known allergies, no hospitalizations, no surgeries...mostly nothing at all.  For Joey's forms it is more complicated and what is just a "formality" often becomes more than that.  Depending on the day, it can even get a little emotional.  Oftentimes I just want to ask, "Do you really need to know everything?"  Because let's be honest,  Joey has got a medical record much thicker than any 17-month-old should have.  I just start filling in the various blanks.  Born at 37 weeks via C-section due to abdominal ascites.  Under the bilirubin lights for five days for jaundice.  Diagnosed with Nystagmus.  Silent aspirator.  On honey thickened feeds.  Severe hypotonia.  ASD repaired at 9 months old via open heart surgery.  Leaky Mitral Valve still monitored.  Hearing loss (extent unknown).  Ear tubes placed at 15 months.  Plagiocephaly corrected via cranial device (helmet).  Torticollis corrected via therapy.  


It's a lot when I look at it all, not as much or as bad as many other children experience and deal with daily, but a lot.  And as much as it all is-- I would not change a single thing about any of it.  To take anything away would mean changing Joey and he is who he is because of all he has been through and all he goes through to get there.

Once of all those blanks are filled out, you get to the part where you check yes or no to various ailments/medical issues.  At this point there is usually a spot on the form where you are supposed to check yes or check no to:  Mental Retardation.


That's a tough one for me.  I'm usually the crazy/obnoxious mom who crosses the entire phrase out and fills in my own version.  Usually it's "Developmentally delayed".  I just can't ever bring myself to check Yes to the "Mental Retardation" box.  I just can't.  Think about it-- could you do it for your own child?  I know--it's just a word.  But words have connotations and meanings attached to them and that is one word I'm not willing to give on.

Which is what leads me to the entire purpose for this posting.  There is a little girl, Amelia.  Amelia needs a kidney transplant.  Without one, she will probably die in the next 6-12 months.

Her parents plan on someone in their family donating to her.  Children's Hospital of Philadelphia (CHOP) have denied her a spot on their transplant waiting list because. . . she is "mentally retarded".   Can you even imagine?  This is her story here.

It's only mid-January and we have almost hit's Joey's yearly deductible for health insurance.  I just got a letter yesterday asking if his medical costs were due to an injury at work.  I had to smile.  The letter said that they are concerned with decreasing costs and cost containment.  Then I read about Amelia.  And that's when I became really worried. Then I was scared.   Where is our health care going?  This is the United States.  What if Joey needs a transplant at some point.  Will he be denied because a box on a medical form declares that he is "Mentally Retarded?" 


Are you angry about Amelia's journey?  Are you outraged that CHOP is denying her the right to try and live?  If you are-- re-post her story.  


You can also go to Change.org and sign the petition.


Here is what Tim Shriver (LOVE TIM SHRIVER!!!  Also LOVE Eunice Kennedy Shriver who started Special Olympics) says about this travesty:

Raise Your Voice for Dignity!

Posted on January 18, 2012 by Tim Shriver

Many people have shared with me in recent days the tragic news about a girl named Amelia who was refused a spot on a waiting list at the Children’s Hospital of Philadelphia for a liver transplant because she is “mentally retarded.” When I heard about this, it made my blood boil.

Some have questioned why we in Special Olympics have mounted a campaign to challenge the humiliating use of the word, “retard.” Others have sometimes suggested that Special Olympics has gone beyond its mission in mounting the world’s largest public health campaign to close the disparities and outright bigotry that still infect systems of care delivery for people with intellectual differences.  Still others wonder why so many of us speak with such passion about how sport is needed to unleash the power of the human spirit and to attack the vicious discrimination that so often crushes innocent people unjustly.

I say to all of them, open your eyes to the discrimination that goes unchecked all around us and help us stop it now!

If you are a medical professional, raise your voice for dignity now!

If you are a conservative political leader, fight for the dignity of all citizens now!

If you are a liberal political leader, fight for the dignity of all citizens now!

If you are a parent, raise your voice for the dignity of Amelia just as if she were your own now!

If you are a young person, blast the social networks with your commitment to Amelia’s dignity and justice now!

If you are a Special Olympics athlete or family member or coach or volunteer, challenge the status quo and fight for Amelia’s right to play and win the game of life now!

There can be no bystanders at moments like this.  Amelia is everyone’s child.  If she is denied care, we are all denied our humanity.

This is life and death and that’s not just rhetoric.  Please join us in stopping this tragic injustice.

Please join in the fight to preserve dignity.  Please fight for Amelia.  Please fight for Joey and all the other millions of people who have an intellectual disability.

The Tears of Down Syndrome

Almost two years ago, when I was about 13 weeks pregnant, we found out that our second son, Joey, had Down syndrome.  At the time, Down syndrome was the least of our worries.  At only 13 weeks, a septated cystic hygroma (significant pooling of fluid and white blood cells) surrounding Joey's head and neck showed up on an ultrasound.  At this time, we were also notified that Joey had hydrops-- excessive fluid all around both his body and his heart. You can see the white line of fluid almost like a halo that goes from the top of his little head all the way to his feet.  There were tears.

We were also told there was fluid around his little heart.  We were warned that our precious son probably had less than a 2% chance of survival and less than a 1% chance of being "normal" (whatever normal is--still not sure--certainly not me!).   We were advised to have a CVS test where they insert a long needle up into the womb and take a tissue sample.  Our OBGYN told us not to look at the CVS as a "termination" test because we were hesitant to have the test.  He told us instead to think of it as a means of gathering facts so we can be ready to provide whatever health care we needed to for our precious son.  There were more tears.

Three days later we learned over the telephone (we had gotten the CVS done a few hours away) that our baby had Down syndrome.  There were many, many, many more tears.  Tears of grief and tears of worry.  Mostly tears related to our fears of the unknown.  Would our son survive?  Would he ever read?  Would he ever talk?  Would he ever ride a bike?  Drive a car?  Go to school?  Have friends?  Have a girlfriend?  Get married?  Have a job?  The questions and worries were as endless as the tears.  

It was a long pregnancy.  So many unknowns.  So many fears.  Trying to offer it all up to God and let our need for control go.  So many tears.  Getting used to the idea that our baby had Down syndrome.  Getting used to saying it out loud.  Getting used to telling people our son had Down syndrome.  I still remember the fear and ultimately the relief I felt after telling one of my best friend's that Joey had Down syndrome.  It was a non-issue to her.  Those are the kinds of friends that you cling to.   


Those are all the first kinds of Tears of Down Syndrome.


There are others that come along the way.  Tears after his nystagmus was diagnosed.  Tears after we learned he needed a helmet.  Tears before, during and after his heart surgery.   Tears when his thyroid levels were off. Tears when he had RSV.


Those kinds of tears follow all children.  It's part of being a mom.  


The best kinds of Tears of Down Syndrome are the ones we are experiencing now....


Tears of joy.  Tears of excitement.  Tears of pride.  Tears of wonder.  Tears of awe.

Just last week during our Help Me Joe (aka Help Me Grow) visit, Joey decided to start Army crawling.  And not just with his arms, but with his legs and arms moving in unison bilaterally.  Right arm/left leg.  Left arm/right leg.  And we cried.  And those were the sweetest tears to taste.  Pure joy.  Pure goodness.  This little wonder has worked so hard and overcomes every obstacle.  

Tonight he did it again.  He signed his first word "more".  More tears.  We have been working on "more" for 16 months now.  He has consistently been saying Da Da when he sees my husband, but "more" was a hard fought battle (Ma Ma is proving to be the most difficult word of all...).  The most amazing part of it was that he did it unsolicited.  I guess that's what kids do.  You try to immerse them and bombard them with words and lessons, but it's not until you let them take a breather, drink it in, figure it out, that they are able to show you that they know exactly what you meant.


Joey--the Tears of Down Syndrome are incredible.  They are like diamonds.  You work so hard for all that you do and your victories are that much sweeter because of it.  Thank you for helping us to appreciate every little victory along the way.  Please forgive us for ever thinking that your life or existence might somehow be a burden.  That you might not be accepted.  Please forgive our ignorance and thank you for showing us the light.   Thank you for starting our mornings off with your joyous smile and ending our days with your sweet kisses.  Being your parents is a privilege that we are blessed with.  We are so proud of you.

Photos (other than ultrasound shots) are all by Nat at www.nattakan.com