Myths and Facts about Down Syndrome #1

Down Syndrome Awareness month ... some myths and facts about Down syndrome...

Myth:  A child with Down syndrome will suffer.

Reality: This could not be further from the truth. Yet, this is exactly what we were told by our (obviously uninformed) genetic counselor when we found out that Mason would have Down syndrome.  Does Mason look like he is "suffering?"  Not in the least!  We have been incredibly blessed with Mason's good health and I know some people with Down syndrome are not so lucky.  As many as 30-50% of babies with Down syndrome may have a heart condition, but only approximately 5% will require open heart surgery . The care of that 5%, by qualified pediatric cardiologists, is remarkable.  With proper preventive and medical care, most individuals with Down syndrome go on to live happy and wonderful lives!

Myth:  Bringing a child who has Down syndrome into your family will be harmful to your other children.

Reality: This is just not true! In fact it is just the opposite.  Siblings of people with Down syndrome  actually have a higher chance of becoming more compassionate and accepting of other people.   We see that in our family.  From a very early age, Owen knew that Mason learns at a different pace from other kids his age.  We always emphasized the fact that everyone is different and has things that come easy to them and things that are hard.  Owen supports and encourages Mason and is always there for him.  And Owen's friends follow his lead and treat Mason just like any little brother!   Amelia and Mason have a very typical brother / sister relationship... they fight over toys (a lot) but when Amelia is sad, Mason is the first one to run over and tell her "It's okay, don't be sad, baby."  The benefits of having a sibling with Down syndrome have been a best kept secret until Dr. Brian Skotko did a study on the affects of having a sibling with Down syndrome which showed that the vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing.  Link to Dr. Skotko's study


Myth:  Children with Down syndrome must be placed in segregated special education programs.

Mason with one of his many wonderful teachers!

Reality:   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.  This is our goal for Mason.  There is no reason that Mason cannot participate in a general education classroom with a modified curriculum for those areas that he falls behind.  Studies show that when children with Down syndrome learn alongside their "typical" peers, they learn faster and more effectively than when they are isolated in a special education classroom.   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.  We will give Mason every opportunity to also meet those goals. 

<3

Down Syndrome Awareness Month - October 2012

Did you know that October was Down syndrome awareness month?   In October 1984, President Ronald Reagan signed a resolution proclaiming the first "National Down's Syndrome Month".  It's amazing to look back and see all that has changed in the past 28 years, not only in the world, but for people with Down syndrome.  No longer are people born with Down syndrome assumed to be placed in an institution.  Instead, they receive life saving surgeries (as necessary), early intervention from birth, schooling in their local school systems, a trade, a job, and live to be more than 60 years old.  But, unfortunately, stereotypes remain.  One of the goals of Down syndrome awareness month is to help break those stereotypes.  To help people see that people with Down syndrome really are more alike than they are different and really just want to be treated with respect and kindness, the same as you and me.   There is a "31 for 21" blog initiative and I'm not going to pretend that I can keep up with blogging every day this month (you saw my dismal showing in my attempt at a 365 photo blog) but I will try to post more often this month with some facts and stories about living our life with Down syndrome.  What I hope to show through my blog, and really through our day to day life, is that having a child with Down syndrome has not negatively impacted our lives  ... in fact, it hasn't *really* impacted our life at all in the ways that matter.   <Except that we have been able to meet a bunch of really awesome new friends who also just happen to have a child in the designer genes club, of course>  So, please, help us celebrate the joy and beauty that resonates from that extra 21st chromosome! 

 

To kick it off, here are some facts about Down syndrome:

• Down syndrome is a common genetic variation in which a person is born with an extra 21st chromosome.  This  usually causes delay in physical, intellectual and language development.
• The exact causes of the chromosomal rearrangement and primary prevention of Down syndrome are currently unknown.
• Down syndrome is one of the leading clinical causes of cognitive delay in the world – it is not related to race, nationality, religion or socio-economic status.
• The incidence of Down syndrome in the United States is estimated to be 1 in every 700 live births.
• Of all children born in this country annually, approximately 5,000 will have Down syndrome.
• There are approximately 1/4 million families in the United States affected by Down syndrome.
• While the likelihood of giving birth to a child with Down syndrome increases with maternal age; nevertheless, 80% of babies with Down syndrome are born to women under 35 years of age, as women in that age group give birth to more babies overall.
• There is wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.
• 30% – 50% of the individuals with Down syndrome have heart defects and 8% – 12% have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.
• Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care and positive public attitudes.
• In adulthood, many persons with Down syndrome hold jobs, live independently and enjoy recreational opportunities in their communities.

Source:  National Down Syndrome Congress

P.S. You can contribute to support Down syndrome awareness, advocacy and programs through the DSANV Buddy Walk Team "Mason's Maniacs" here or click on the gadget on the left side of the blog.   Thank you!  

First Day of School 2012

In the interest of time (mine, being that I don't have much of it!), this is going to be a photograph heavy, lightly worded blog post.  But, really, who wants to hear what I have to say, anyways?  It's all about my adorable children on their first day of school 2012!

Here is Owen on his first day of 1st GRADE!  He was really excited about not being the new kid on campus anymore.   I asked Owen if he was "nervous" the night before the first day of school.  You know what my cool cat said?  "Why would I be nervous, Mom, it's just SCHOOL?!?!"  I love that my boy has that much confidence ... or really just doesn't care!  Ha!

First Grader!

The look of confidence ... "I've got this, Mom!"

Are you feeling the love? 

Mason's first day wasn't until a couple of days after Owen's.  He started his 3rd year of special education preschool, his 2nd year at Great Falls Elementary.  He was excited to get back on the bus and go see his teachers and friends.  Don't get me started on the task it took to get Mason bussed from his preschool which is outside of the Great Falls school boundaries... two preschool teachers, a principal, a special education director, a school board member ... and one determined mama vs. Transportation.  Guess who won?   Go Team Mason!   So lucky to have so many people on our side fighting for what was right for Mason.  Can you believe he will be in Kindergarten next year??  Me either!

The last year of Preschool!

Amelia saying, "Don't leave me!" 

A little getaway to Busch Gardens

We wanted one last hurrah before it was back to school so we packed up and headed south for a long weekend in Williamsburg, VA. Our plan was to hit Busch Gardens and Water Country.  We were at a disadvantage due to the ages of our kids.  Owen wanted to go on all of the big rollercoasters but was one inch too short, Mason was way too small for most of the rides he wanted to go on and had trouble being patient while waiting for the attractions that he could ride.  Lastly, there  really weren't any rides that Amelia could go on!  But, Owen snuck onto those roller coasts, one inch be dammed (and only got denied once), Mason learned to be a little more patient while waiting for the Grover roller coaster and Amelia took in the sites from the stroller and was a super trooper!   Despite the best attempts from mother nature to spoil our fun and a park full of 13 year old girls for the Victoria Justice concert, a good time was had by all!  

Owen and Brian after riding the "Verbolten"

On the merry go round .. woooooo!!!

Mason and Brian on the Grover roller coaster

Mason LOVING cookie monster!

Mason up on stage with Big Bird!

Amelia was such a trooper in the stroller!

Ready for the pirate show!

Mason is channeling his "inner Pirate"

Mr. Cool waiting for the roller coaster

Not so cool ... during the roller coaster (but then asked for MORE)

Meeting Elmo multiple times made the trip for Mason!

Next post:  Back to school! 

Our one year old(S)!!

As I was looking at the pics we took of Amelia's one year birthday, I was reminded of something familiar.  And something else familiar.  I knew what it was!  We have almost identical pictures of my three little munchkins ... in almost the exact same pose (what is it with that left hand?) enjoying their first birthday smash cakes.  I knew instantly that I wanted to do a comparison collage.   And... here it is! 

As a side, when I put the three kid's pictures together, I always ponder how to order them.  Do I do it in birth order?  Book end the boys with the girl in the middle?  Decisions... Decisions...   :)  

Amelia Bee is One! (Bumble Bee Birthday Party)

I don't know where the last year has gone.  Somehow over that time, our baby girl has grown from newborn to practically a toddler.  You forgot how much babies change in that first year. It is remarkable.  I really wanted to make Amelia's first birthday special.   This is my last first birthday (I get a little misty eyed thinking bout it).  We decided on a bumble bee theme since we call her "Amelia Bee."

 Invite by Lil Duck Duck.

Pillowcase dress by Frida's Closet
Bumble bee headband by SadieBloomDesigns

I really enjoyed putting together all of the decorations and coordinating Amelia's outfit, the cake and decor.  I might have enjoyed it too much!

Printables by Stephanie DeTore

I was really happy with how the cake turned out ... matched the theme perfectly and was delicious!
 

Cake by Esquire Confections


The fun of being one is that you get your own little smash cake to do what you wish.  And Amelia quite liked her cake... as you can see!

There wasn't much left when she was done... but Amelia was a happy little bee!

The party was a great success and we really enjoyed spending time with all of our friends and family to celebrate Amelia's first birthday!   I can't believe our baby girl is ONE!

Happy birthday, baby girl!  

Keywords: Ultrasound baby with Down Syndrome

I write and post pictures / videos to this blog for friends and family who want to catch a glimpse of some of our activities and accomplishments.  I'm hardly a high profile blogger.  But, an added benefit of this blog is that I get to show the world that our life, which happens to include a child with Down syndrome, is full and happy.  It's kind of fun every once in a while to look at the "stats" on my blog page. One of the "stats" show the referring websites and google / yahoo searches that lead to your page.  I'm always amazed that the top searches that refer to my page are from the picture of Mason's ultrasound when he was 12 weeks old in Our Down Syndrome Story.   I imagine someone just finding out that their baby might have Down syndrome.  And I remember how I felt when that was me.  Scared ... searching for answers.  Googling everything I could think of, hoping it would lead me to the conclusion that NO, my baby does not have that extra chromosome.  Ultimately, we know how my story turned out.  We got a beautiful baby boy with a little something extra.  I hope when the googler sees my blog,  they think, just for a second  that  their worst fear isn't really that scary.   That if their child does have Down syndrome, their life will still be full of love, holidays, activities, laughs, vacations, sibling games and rivalries, and accomplishments.   So, here it is again... our little boy at 12 weeks gestation:

And here he is now ... almost 4 years old.  Full of life. So happy.  And healthy.   We can't imagine our life without this little guy.

I also wanted to take the opportunity to revisit some of the feelings and fears we had when we got our prenatal diagnosis and my current thoughts on them. 

1.  How much money and time would we spend in hospitals?  Mason was discharged from the hospital 2 days after he was born.  The same timeframe as our first "typical" son.  He was perfectly healthy.  Heart, lungs, intestines .... nothing special or different there.  After that, it was mostly preventative appointments, including the ENT and geneticist.  Whenever Mason got a cold, it would go into his sinuses and lungs.  For the first three years, that was the bulk of our medical "issues."  Then we found out at age 3 that Mason had developed Celiac disease.  Once we implemented a strict gluten free diet, it is completely under control.  And Mason adjusted like a champ.  Has never asked for his beloved Goldfish again.  A couple of months before Mason's 4th birthday, we found out that Mason has been aspirating liquids his whole life and we never knew it. For three months, we thickened his drinks while undergoing therapy to strengthen his larynx.  It cured him and now Mason is back to consuming all regular thin liquids!  We have PT/OT (alternating) once a week and that about rounds out our doctor and therapy appointments.  Between insurance and Medicaid, most of it is covered and we do not pay much out of pocket. 

2. Will he talk and be able to communicate with us?  Will he be able to attend daycare / school?  YES!  Mason has always been pretty verbal, speaking his first word ("ball") before he was one.  We did teach him some sign language to bridge the gap when his language lagged behind. Now,  at almost four, Mason speaks in 4-5 word sentences and his language is blossoming and growing every day.   Mason has attended daycare and preschool with typical peers since he was 4 months old.  He also attends the county's special education preschool and we feel that it is a good mix for him.  Everyone has always been embracing and supportive of having him in their school.  

3.  What will our other children think?  Will we have enough time for everyone? This was one of our biggest worries.  And now it is the least of my worries.  In fact it just seems silly.  Owen loves his brother and is beyond supportive of him.  Owen understand that Mason learns at a different pace from most kids his age and encourages him each day.  They are best friends and mortal enemies ... just like all brothers!  Mason loves to make our newest little girl laugh.  Of course they do have some typical sibling sharing issues, which makes me smile more than anything!

We've learned a lot over the past 4+ years.  About Down syndrome.  About patience. About being a family.  But, mostly, our life has been pretty typical.  Because children with Down syndrome really are more alike than they are *different*.      

Two Wheelin'

A couple of weeks ago Owen took a 2 hour class to get us started teaching him how to ride his bike without training wheels. We knew we needed this class to get Owen to focus and commit time out on his bike. Otherwise he says he's done after about 5 minutes... because he's 5 and that's about as long as his attention span lasts most days! The class was through the GW Parkway park rangers. The first step was to secure the helmet and take off the pedals. Yes, turn his bike basically into a balance bike. They spent two hours going back and forth slowly getting the feel for how to balance. It was a warm day but Owen persevered because he was determined to learn to ride that "big boy bike!" By the end of the day, he could balance pretty good, but wasn't quite ready to put the pedals back on yet. 

Getting instructions from the Rangers

Practicing with daddy

There were some tumbles ...

But he was getting it!

Last weekend we took the bike back out ... Put those pedals back on ... And whadaya know.  He can ride!!! It really is amazing how riding the two wheeler just clicks. We still have lots to practice bit those training wheels are going into storage til Mason needs them one day!

On milestones...

In hindsight, I realize that Owen hit almost every developmental milestone early.  He was my first and I didn't know any better.  When Mason came along with his designer genes, I knew that my "expectation" of milestones had to be thrown out the window.  I let Mason reach his milestones on his own pace.  And that wasn't easy for this impatient mama!   But it taught me so much.  I learned not to "expect" things of my children (well, except for good manners and good-night hugs, those I expect!) because each child will do things at their own pace given their own abilities.  And Mason sure did everything at his own pace.  That stubborn little monkey never crawled.  So you know that old quote, "you gotta crawl before you walk"?  Yea... Mason blew that out of the water! 


(and I should caveat that ... because Mason did just start crawling a few months ago ... at age 3.  Why?  Because he LOVES to pretend he's a dog!)  

Anyways.. I digress.  My point is that after everything we went through with Mason, it has been a little bit strange to watch Amelia accomplish her milestones so quickly (in comparison) and without intervention.  The milestones that we watched Mason struggle over.  The milestones that we worked on with our physical therapist.  Over and over again.  But for Amelia, the light just clicked one day and she's pulling up on furniture.  Soon after .. she starts crawling.   I want to yell ... "STOP, you are growing up too fast!"   But I can't hold her back just like I couldn't push Mason ahead.  And that's okay.   So, with that said, we now have three mobile children.  And I'm a little bit scared.   :)

Here is a video of our little girl in motion!

 

Play (T) Ball!

Today was opening day for the Great Falls Little League and Owen's first T-Ball game.   He was so excited as the kids lined up with their sign to march into the field.

Do you like the sign that Brian and I pulled together last night like a last-minute school project?

We had a zillion things going on between this morning's opening day and the 5 pm T-ball game and I thought the anticipation would kill him.   Some pics from the game ...

Playing Center Field

Brian "coaching up" Connor

Owen waiting for his turn to bat.

Running to first base

"Mom, I'm trying to play baseball here!"

And here's what the little kids did while their older brother played ball...

Mason brought snacks ... ready for the game!

Amelia and Emma gummed plastic bottles ... fun fun.  :)

Play Ball! 

Opening Day 2012

It's become a tradition ... Spring, Baseball and the Lochheads.  It was a nice day at Opening Day for the Nationals, just Owen, Brian and me.  We may or may not have taken our 5 year old out of Kindergarten for a day at the Ballpark. 

The weather was just perfect for April, a little brisk but sunny.  Here are some pics of our adventure: 

Ready for the game to start!

Owen and Brian

Owen and Kristin

Owen's photography :)

Look who we ran into?!?! Poppy, on a work "field trip!"

The three amigos!

The Presidents! 

Owen and his rally hat (it worked!)

Walking back to our car ... my two big boys!