World Down Syndrome Day: an equal opportunity designer gene

This week, March 21st, is World Down Syndrome Day!  We are celebrating those who are rocking 3 copies of the 21st chromosome.  Coincidentally, we are also celebrating my brother's 30th birthday.  Happy birthday, Matt!

I could go on and on about Down syndrome and my awesome daughter who sports her designer genes like no other, but instead, I will leave you with this adorably cute picture of Ellie:

Is she rockin' this extra chromosome, or what?!
Where to find this awesome shirt.

and a few facts about Down syndrome with some more pics scattered throughout:

• Down syndrome aka Trisomy 21 is a genetic syndrome present from birth.  It is characterized by an extra copy of the 21st chromosome in every single cell.  This means that a person with Ds has 3 copies of the 21st chromosome instead of just 2 copies. There are two other types of Down syndrome--Translocation and Mosaicism.

• Down syndrome is the most common genetic condition.  It does not discriminate.  In fact, Down syndrome loves all races, cultures, countries, religions, socio-economic status, and gender.  It is equal opportunity designer gene lottery!

Our family truly did win the lottery.

• While the incidence of having a child with Ds increases with maternal age, the fact is that 80% of all children with Ds are born to mothers under the age of 35.  This is because of the higher fertility rate among younger woman.  [Fact:  this Mama Bear was 28 years-old when she got knocked up!]

• There are many stereotypes surrounding Down syndrome and while there may seem to be a little thread of truth behind them, they are just that-stereotypes. My favorite one is "They are happy all the time."  My mommy world would be so much easier if Bear was truly happy all the time.  In fact, just like you and me, people with Down syndrome experience all emotions including sadness, anger, fear, jealousy, happiness, excited, and happy. 

• Just as we consider ourselves unique, a person with Down syndrome has her own personality.  Her own strengths.  Her own weaknesses.  Her own likes, dislikes, and dreams.  She is just that. . . a unique individual.

• People with Down syndrome have difficulty developing gross motor and fine motor skills due to low muscle tone and loose joints.  Imagine wearing thick gloves and a thick snowsuit and having run in that and pick up small objects.  That is what it feels like for my daughter as she tries to put together a puzzle, bring a spoon to her mouth, or as she tries to streak throughout the house.  

• Oh and for those who have been told that people with Down syndrome never walk . . .

• Many people with Down syndrome have a hard time learning how to talk and may, at times, be difficult to understand.  This is because of many factors such as low muscle tone (ie jaw and cheek muscles, tongue, lips), small mid-face, high arched palate, and abnormal dentition.  I dare you to shove your mouth full of marshmallows and then try to say your "Sally sells seashells by the seashore".   Tasty, perhaps?  Difficult, yes!  

• People with Down syndrome are happy with their lives and many of their siblings say that their lives have been enriched due to having a brother or sister with Down syndrome.

• Parents of those with Down syndrome love their children, are proud of them, and feel that their perception of live has improved because of their children.

• People with Down syndrome are contributing members to society.  They hold down jobs.  Some in sheltered workshops.  Some as grocery store baggers and fast food clerks and some as preschool teachers, public speakers, and even restaurant owners.  They enrich the lives of those around them and encourage people to look as the ABILITY in disABILITY.
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• Adults with Down syndrome want to have meaningful relationships.  They want to date and some even marry. Read about Monica & David or Shelley and Bill.

• From the mouth of my dear friend Julie at Upside Down: I never knew I wanted a child with Down syndrome until I was given one.

References:

Skotko BG, Levine SP, Goldstein R. 2011. Having a brother or sister with Downsyndrome: Perspectives from siblings.
Am J Med Genet Part A 155:2348–2359.

Skotko BG, Levine SP, Goldstein R. 2011. Self-perceptions from people with Downsyndrome.
Am J Med Genet Part A 155:2360–2369 

Skotko BG, Levine SP, Goldstein R. 2011. Having a son or daughter with Downsyndrome: Perspectives from mothers andfathers.
Am J Med Genet Part A 155:2335–2347. 

National Down Syndrome Society.  www.ndss.org

Who I Am

World Down Syndrome Day, March 21st, is rapidly approaching and the International Down Syndrome Coalition [IDSC] has launched a photo campaign called "Who I Am" to spread awareness about Down syndrome.

Rocking Her Extra Chromosome for World Down Syndrome Day 3.21

I am here to be Ellie's voice.  Since I seem to have a camera glued to my eye, I believe that I have captured the "essence" of my daughter.  Her spunkiness.  Her wide range of emotions.  Mostly, I have documented her awesomeness!


Who She Is. . .


She pushes the limits [and mama bear's buttons!].

Me? Climb?  Never!

She loves to entertain her 'friends'.

She thinks cupcakes are their own food group.

She is a typical 3 year-old who likes to be heard.

She is a princess.

She loves animals.

She loves to steal talk on the phone.  And run up my long distance bills.  And did she just call England?

She likes to "strike a pose" while on the phone.

She is a student full of intelligence and curiosity.

She is a daughter who is loved deeply.

She is. . . .

Ellie.

A Girl with Many Names

My daughter has many names:

Ellie Bear
Bear-Bear
Bear
The Chunky Chicken
Chunky Love
Turkey Bear
Chunky Chicken Tuna of the Sea

Halloween 2010

She even occasionally responds to Ellie.

Halloween 2011

However, she will not respond to Downs child, Downsie, or Down syndrome child.  One of the many things that I have learned since having a child with special needs is how simple wording can increase or diminish respect.  A child with Down syndrome puts the child first.  Ellie is a little girl with a spunky personality who also happens to have Down syndrome.  Down syndrome child focuses on the syndrome.  It sounds a bit odd to say asthma child, high cholesterol child, or glasses child and Down syndrome is the same way.  People First Language is a sign of respect.

A child with Down syndrome = Ellie and others with 3 copies of the 21st chromosome

Down syndrome child = genetic condition

*This marks then end of the 31 for 21blog hop that occurs during the entire month of October to bring about Down syndrome awareness*

Happy Halloween everyone!!!

Sight Reading and Communication

Announcing: Ellie Bear is a SUPER ROCKSTAR!

This isn't exactly a post about teaching your children to read, but rather a post about having the highest of expectations for your children, extra genetic material or not.


I remember reading Gretchen's post on Julian's Journey about her little man sight reading starting at 20-months of age.  I was amazed!  Just amazed.  She walks you through step-by-step on how to teach your child to sight read.  I also remember with great pride watching a video of Becca's Little Miss on The Bate's Motel reading a Biscuit book.  Yes, of course I went out and bought a few Biscuit books!


For my fellow friends, I was very amazed and impressed (and perhaps a bit envious), but I felt like Ellie just was not there yet.  I believed Ellie and I had so many other areas of development that needed to be mastered.  Plus, however ever would I find time to teach her to site read?  For starters, Ellie would have to sit.  There are flashcards involved.  Ellie eats flashcards.  I was really working on protecting Ellie from breaking her neck or cracking her head open during one of her climbing stunts.  Much of our free time is spent at playscapes and parks to help her receive good motor sensory input.  I was also spending a fair amount of time presenting her opportunities for language development--either sound production or signs.  Ellie and I were using puzzles and the iPad to help hone in on those fine motor skills needed to sign.  There was no time for site reading.

Of course, there was Signing Time every. single. day.  Rachel Coleman is like crack and I truly felt Ellie was learning to communicate via sign language thanks to these videos.   Ellie would actually SIT or stand while engaging in play with blocks or her beloved kitchen utensils.  Even though Hopkins, Alex, and Leah were not receiving her undivided attention, Ellie really was absorbing.

Guess what The Bear is watching?

Andrew has our TV running off of Linux.  Do not ask me what that means.  It involves coding and >;
Back to the topic at hand.  The Signing Time episodes are located in a folder and the screen will look like this (picture a blue background):

Eating Time
Box of Crayons
My School
Happy Birthday
Once Upon a Time

Those are all episode titles.

Last month, as each Signing Time episode was highlighted on the TV screen, Ellie signed

Eat
Colors
School
Happy
Once Upon A Time (yeah, I know. . . I didn't know that sign either)

She was reading the screen.  No pictures.  Just words.

I started to write short, important words on the little blackboard easel.  If she would say "mama", I would point to "Mama".  If she said "Dada Daddy", I would point to "Dada".  I would just do this throughout the day if I happened to be near the blackboard.  Two seconds, that is all it took which is good given that Ellie's attention span is 3 seconds.

This morning, the Princess Bear sauntered out of her room like the royal queen, pointed to the chalkboard engraving of "Dada" and said "da dada da".

Again, she is a genius.

I had figured that there would be no sight reading yet because I wasn't working on it with her.  I was wrong.  I underestimated my daughter's capabilities.  Ellie is a rockstar and as she learns to communicate, I am learning just how much my little girl knows. . . and it is a lot.

A Visit to the Pumpkin Patch

Autumn is my favorite season.  I love the beautiful foliage, the scent of damp leaves, the cloying scents of nutmeg and cinnamon, and warm apple cider & hot chocolate.  The rejoicing that happens when Starbucks brings back their pumpkin spice latte--a sign the Fall is finally here. The pumpkins!  Oh the wonderful pumpkins and Halloween candy!

Oh wait. . . I am apparently reminiscing about Autumn in the Midwest and East Coast.  I live in the land where the seasons are hot, hotter, hot, and somewhat cooler.  Right now we are slowing, ever so slowly, moving from hot to somewhat cooler with an occasional hotter day thrown in.  Last week, 90 degrees, but then on Friday we only got up to the 60s.  For a native Texan like my daughter, this was "cold".

Sixty degree temps mean on thing.  A visit to the pumpkin patch!  Andrew and I were so excited to take Ellie Bear to the local nursery.  For the past 3 weeks, she has wanted to read "Biscuit's Visit to the Pumpkin Patch".  She loves this book because it has a dog, a wagon, and balls.  The balls being pumpkins.

However, upon entering the pumpkin patch, she did this:

Apparently she is "all done"

In the end, she was happy enough to touch the pumpkin and perform an abbreviated sign for tomato and shout ball.  A successful Autumn adventure!

*To all of you affected by Superstorm Sandy, my thoughts and prayers are with you.

Making strides

I imagine that this grainy iPhone photo of Ellie in the parking lot of a grocery store may not be all that impressive to many of you, but to me, it is amazing!

1. She is sitting in the grocery cart.

2. She is not screaming like a poor little injured seal or an angry tiger.

3. Her entire entourage of blankie, baby, and stuffed puppy are in the cart with her.

    a.  As in she did not get them taken away due to tossing them on the floor in a fit of anger or shopping protest.

    b. As in she did not nearly injure an innocent shopper during an angry throwing episode.

4. The shopping bag is full as in I did not need to high-tail it out of the store as fast as humanly possible without purchasing all of our groceries due to an epic toddler meltdown.  Yes, I stocked up on every single item on the list.

5. Did I mention that she is sitting in the cart and not screaming?  She is sitting in the cart and not screaming and I was calm enough to take this photo.  My face is not flaming red from embarrassment, stress, or from running at "the speed of a silent kangaroo"*

6. She is wearing a coat.  This has absolutely nothing to do with behavior, but rather I wanted to point out that it was actually cool enough in this desert to wear a jacket. . . at least in the wee hours of the morning.

7. This glorious picture will be shown to Ellie Bear before each shopping trip as a reminder of how big girls behave.  Good behavior is rewarded with fruit snacks and lots of exciting praise.   Rock on Toddler Bear!!!!

As I am sure you have gathered, shopping is a rather trying horrific interesting experience with the Bear.  It was getting progressively worse.  It was so bad that she would scream as we approached the Target parking lot (yes, I do most of my shopping at Target as they have more of a selection than HEB).  So bad that I avoided shopping with her at all unless it was extremely necessary.  This morning, we had a cheese cracker emergency.  Seeing as Ellie Bear is sustaining solely on cheese-cheese crackers and we were out. . . well, toddler food emergency. 

I decided to shake things up a bit.  A little experiment. I realized that Ellie tends to do a bit (just a teeny bit) better at the HEB grocery store vs. Target.  Perhaps the lights at Target are too much for my girl with sensory issues.  Maybe she can hear the hum of the pesky fluorescent lights.  Or maybe she is offended by red shirts.  I do not understand her strong dislike towards Target, but things are much worse there.  

We ventured out early on Sunday.  There were perhaps 5 shoppers in the entire store.  Our foray into HEB was a success.  This first in many months.  I did not have to keep her mouth stuffed with cheese crackers (and a good thing too since we were out!) and no one was injured or had an ear drum ruptured as a direct result of being in the near vicinity of our shopping cart.

Sadly, there was one lonely package of cheese-cheese crackers on the shelf.  Our HEB is closing in a few weeks and will be relocating to a much larger, louder, and more inconvenient location.  Still, the above picture will be useful.

Bear, you were a Rock Star today!  Mama Bear is so proud.

*Okay Wiggles Fans:  Name the DVD that tells Jeff to hop of the stairs "at the speed of a silent kangaroo".

**The month of October is National Sensory Awareness Month as well as Down syndrome awareness month.  I have made a pledge to blog every day during the month of October.

The 1st Halloween

Little stinker totally slept through it.  No trick-or-treating.  Goodness and I had big plans to sneak into her candy stash!

The Tackle Hug

Once upon a time, there was this:

Then a few months later, my daughter blossomed into this:

The Fairy Princess, according to Ellie

Hi everyone!  Ellie Bellie Bear here.  It seems that my Mommy has been writing things about me again.  Things about my temper and my totally awesome sneezing.  She has also, apparently, posted some rather unflattering pictures of me with food on my face and stuffing an entire Quizno's flatbread into my mouth.  The Bear will not stand for this paparazzi nonsense!

It would be very prudent for me, The Ellie Bear, to hijack this blog and set the record straight.

I am a fairy princess.

Correction: THE Fairy Princess

As such, I am entitled to flaunt my sassiness and wear a tutu whenever I please.  A big tutu.  With sparkle tights.

Here are a few important things to know about The Bear-Bear Fairy Princess:

1.  This Beary Fairy has manners.

It is highly appropriate to knock on doors either to gain entry, to alert others of your presence, or to be released from a room.  I enjoy knocking on Daddy's office.  I want him to know that he is loved.  I also like to knock on the Garage door, because sometimes Daddy is in there and I fear he might be lonely.  When I wake up in the more, I like to pound on my door with such gusto that the entire wall shakes all while shouting "Dada dada daddy!!!!!!".  You know, the families that wake up at 5:00am together are the families that stay together.

If you want a toy, it is important to sign "share" followed by a quick  "my turn, please" before yanking the toy out of another friend's grasp.  Immediately sign sorry and thank you so that they stop crying.   Just remember your Signing Time! etiquette "please, thank you, sorry makes everyone feel good".

2.  This Fairy Princess love to slide and climb.

I love to inform my Mommy of my plans.  I do not want her to worry and I want her to be super excited.  That is why I sign climb and red.  That way Mommy knows I am going to run across the parking lot, climb on the playscape, and slide down the red slide.  For some reason, she says something about white hairs and heart attacks.

3.  Fairy Princesses are big girls.  I am trying hard to be a big girl.

I know all about "potty".  For instance, any time Daddy gets up from the table at a restaurant, he is going potty.  I know that he will be back and that he isn't leaving his little Bear.  I like to sign potty and shout "Eeeeee!" (I have trouble saying "pah-tee") so that the whole restaurant knows that he will be right back.  Many times Daddy returns to the table with more salsa or more iced tea or says he "paid the bill".

Big girls go potty too.  I sign potty and bath. Then, I open the lid on the toilet and place my special seat on there.  I sign help and Mommy removes my pull-up.  I sit there and grin.  I am so excited because I am a big girl.  We sing "Wheels on the Bus".  Then I hop down, close the lid, and flush the toilet.  Mommy is adamant about putting on another pull-up (I am getting good at stepping into the pull-up), but I rather run around naked.  It is fun.  I love to wash my hands afterwards.  I pull my stool over and wash and wash and wash some more.  Using lots of soap is good.  I love to create tons of bubbles.  I also like to fill up the little cup by the sink with water.  I try to drink from it, but I get it all over the front of my shirt and the floor.  The thing is, I have been told that I am not really going potty.  That I am going potty in my pull-up.  Something about me going "through the motions".  I don't care.  This Fairy Princess Bear is a big girl!

I forgot to tell you that Fairy Princesses wear wings.  I really didn't want to wear wings, but then I saw mommy wear them and the dancers on The Wiggles wear them during one of their exciting songs.  Everyone knows The Wiggles have it right!  I had to have bright pink wings.  With glitter!