Sunday, March 31, 2013

Happy Easter and GIVE AWAY WINNER!


Clearly this little Bear forgot to wear her KidCompanion.

This winner for the KidCompanion Give Away is  CHRISS!!!!!


These look great! If we won, ruder would like the blue circle with a 20" colored necklace. Maybe this will help to save his poor little thumb he insists on gnawing raw.



Chriss, please send me your mailing address to
thechroniclesofelliebelliebear@yahoo.com

so that Ryder can receive his blue circle chewelry necklace.

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Tuesday, March 26, 2013

Aaaaaaahhhhhhhh oooooooooh!

Title of this post, courtesy of Ellie Bear.

Our little Bear has a new word:  "Aaaaaaahhhhhhhh ooooooooh!"



Balloon.  Why?  What did you think she said?



Yes, I thought so too.  It is okay. 

Aaaaaaaaaahhhhhhhh ooooooooooh!


That's right, my little love.  You have balloons.


*Don't forget to check out our Give Away for a free KidCompanion Chewelry necklace.

**Be sure to read and sign the petition for Robert Ethan Saylor.  Read more here.


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Sunday, March 24, 2013

Dying at the hands of the police: Robert Ethan Saylor

Those of us, my self included, in the Down syndrome community spend much time advocating that "we [those with Ds] are more alike than different" and "treat her like any other kid".  We fight for equality.  We fight for our children to be included in the classroom and to be considered for employment.  We fight for awareness.  That Ds isn't a condition that one suffers from.  That having a child with Ds is amazing, not something to be pitied for.

Then, something happens that reminds me "she is different".  The fact remains that my daughter has a disability.  No, it does not define her, but she does have Down syndrome.  With that comes differences in her anatomy.  With that comes an intellectual disability.  Ellie does not understand things that most 3 year-olds understand.  She will most likely as an adult have difficulty with abstract thought.   She may not understand rules, including societal rules.  She may need help to navigate the world.

I read a news story in the Washington Post that startled me.  It made me take a step back and rethink everything that I have been writing about.  Maybe it is not the story, but the comments to the news story.  The comments made by people who think they know everything when in fact, it shows just how much they do not understand about intellectual disabilities or Down syndrome.  Comments that are crude and assume to know how the parents raised their young adult child or how this man behaved during the incident.  Over eight hundred comments and so many that are negative towards the victim, the young man who died.  These people are clearly ignorant and these are the types of people that my daughter will encounter throughout her life.

Robert Ethan Saylor, 26 yo


A 26 year-old man with Down syndrome died in the hands of police custody.  Robert Ethan Saylor was watching a movie at a theater when he refused to leave because he wanted to watch Zero-Dark-Thirty again.  He had an aide.  An eighteen year-old.  She had left him alone for a brief period of time to go get the car.  A theater called for help --this help constituted 3 off-duty police officers working as security at a nearby shopping complex.  I don't know if they identified themselves as cops to Ethan.  I do not even know if Ethan even understood that they were indeed the police. We may never know because he is gone from this world.  The cops stated that Ethan cursed at and hit and kicked at them.  They applied 3 sets of handcuffs to Ethan to restrain him.  While Robert Ethan Saylor was down on his stomach, he started to asphyxiate.  As in be smoothered to death.  The cops did flip him over and tried to administer CPR.  Ethan died.  Ethan had Down syndrome.

I am not arguing that Robert Ethan Saylor should have been allowed to stay at the theater to watch the movie again. I am not stating that the theater should not have asked for help.  I am however, stating that Ethan Saylor should not have died.  How did this happen?  Three sets of handcuffs?  Three?!?  Three officers for one guy.    Did they let him up as soon as they saw him struggled to breathe?  How did this happen?  How did he ended up without oxygen for so long that he died?  Just how long was his face mashed into the ground?  The news report says 1-2 minutes.

Also shocking is that Ethan's death was ruled as "Death By Down Syndrome".  Seriously? He died from Down syndrome?  I highly doubt it.  The coroner stated that his obesity contributed to this.  I would like to see an official list of all obese people who died during their arrests.

Should Ethan have been treated differently?  Maybe. Should he have been allowed to stay in the theater? No.  Like I said, this is not about allowing the man to watch the movie again for free.  This is not about the theater calling for help.

This is not about what many comments have stated (commenters who do not even know this family or how he was raised!)

So Saylor 'had no history of violence?" Maybe that's true. It probably is. I suspect he had no history of violence because he was used to having his whims catered to. I think he did pretty much whatever he wanted to do and got away with it because he was "special." His parents didn't keep him in line; he was allowed to call 911 and the police so often that his mother brought cookies to the Sheriff's department in gratitude for indulging him and not arresting him. I think when he was told to leave that theater it may have been the first time in his life he was not allowed to do something he wanted to do. And it ENRAGED him. I think that's where the violence came from. For the first time in his life he was thwarted and he would not accept it. And that's why he fought and cursed and had to be subdued. I guess his family and friends found his unrestrained behaviors cute and charming. But in the end it proved fatal.--commenter on Washington Post Story













This is about how the police handled the situation.  The officers should have recognized that he had Down syndrome and as such realized that perhaps they needed to take a different approach.   Maybe they could have waited for his aide? Maybe they could have called his family.  I guarantee you his mama bear could have gotten him out of that theater. This is about a man with an intellectual disability dying at the hands of off-duty officers.  It is about his death.

I imagine that Robert Ethan Saylor was scared.  I imagine he didn't understand that those out-of-uniformed men were officers.  I imagine that he believed he was defending himself. I imagine that he was petrified as he struggled to breath.  I also imagine that his death will torment those police officers for life.

I don't want my daughter to be treated different and yet, I do.  I would want her to learn the consequences of her actions, but not at the expense of her life.  In an ideal world, I would like people to be educated that my daughter and others with Ds have an intellectual disability.  That it is okay to ask for help if there is a situation requiring police intervention or any other type of behavioral intervention.  That I want the police to receive more training on working with those who are disabled. Most of all, I want her treated with RESPECT.  Respect--Just. Like. Everyone. Else.

This new story has shaken me.  It makes me me scared to ever let Ellie, as an adult venture off alone. I want her to do things on her own and yet, I want to be there, right by her side.  Protecting her.  My heart goes out to the Saylor family.  


Petition for Robert Ethan Saylor at Change.org

More on Call-To-Action: Down Syndrome Uprising


Saturday, March 23, 2013

Mouth, Chew, Bite: Kid Companion Chewelry and Give Away





The above picture may not look exciting to many of you, but to me, it is a symbol of how far my Ellie has come.  Two months ago, the above would not have happened.  Two months ago, I would not have strayed far enough from my daughter to take a picture of her while playing with chalk.  I would have sat right with her, practically on top of her, ready to whisk that chalk away before she devoured an entire piece.  Or box. of chalk.


"Why this blue positively makes my eyes 'pop'!"


Pink and blue, her personal favorites.


It isn't just the chalk.  Ellie's consumption of non-edible items extend to crayons, paper, the tips of colored pencils, and markers.  Yes, markers and by that, I mean the tip as well as biting through the plastic.  All of our board books display teeth imprints.  Most of Ellie's clothing has little holes along the collars from where her pointy teeth have poked through.  Then there is the mouthing.  The mouthing of blocks, Little People toys, balls, balloons (dangerous!), and any toy in general.

Ellie has sensory processing disorder mainly with oral seeking tendencies.  Everyone has some sensory issues, but Ellie's affect her ability to function as a little girl--she has trouble playing and she has difficulty interacting with friends.  I have frequently heard "Ellie ate my chalk!" and "Ellie, we don't want to play with you because you chew our toys".  As a mama bear, I want to cry.  I want to shelter her and place her in a protective bubble.  I want to yell at the kids even though they are correct-she does eat their chalk and toys.  However, I know that none of that will solve anything.  Ellie needs to have her oral cravings satisfied, but not at the expense of her social life.




I was recently contacted by KidCompanions Chewelry to see if one of their products would help Ellie and her intense mouthing, chewing, and gnawing.  They graciously sent one of their necklaces for Ellie to try.  I was a bit skeptical.  Would Ellie actually wear this thing around her neck? Would she actually chew it?

Go back and look at the top photo--Yes, Ellie is actually wearing her KidCompanion necklace AND she is not eating chalk.  She is. . . drawing with it!


Do you see?!  There is no chalk around her mouth!


As a parent, here are the characteristics that I like about the KidCompanions Chewelry Necklace:

  • I am going to state the obvious here: it is a necklace!  As in worn around the neck.  As in my daughter can attempt to throw it and it is still there.  She can keep it in her mouth and still use both of her hands to manipulate toys or torment the dog.  When she lets it drop out of her mouth, it is still there.  What all of this means is: it does not get lost! (they also have clip-on options as well, but Ellie is a fashionista and needed the necklace)
  • It is safe.  It has a break-away type clasp in the back.  If Ellie decides to yank on it or it happens to get caught on a piece of play equipment or a jealous child tries to steal it, the necklace clasp opens and does not choke my beautiful little girl
  • It is latex-free.  Since I am allergic to latex and I have to handle this necklace, this is a big pro.  It is also free from lead, BPA, PVC, and Phthalates.
  • Is is top-rack dishwasher safe.  I love that.   The Chunky Chicken is a rough and tumble kind of girl.  She plays in the sand, mud, puddles (when Texas actually gets rain), paint, and mulch. Sometimes, some warm soap and water just doesn't cut it. 
  • The pendant is extremely durable.  Ellie bites and when she does, it is HARD.  This thing has stood up to some serious gnawing and biting.  Plus, this mama bear no longer has beautiful bruises of various colors decorating her arms and Ellie Bear no longer has red, excoriated sores on her thumbs from gnawing.
  • Ellie is not a big fidgeter (she is more of a climber), but I am.  I am always grabbing my earring or rubbing my fingers along my necklace.  I am someone who needs to keep my hands busy.  This pendant has a little dot in the middle (Ellie's is red) that is a different texture.  It is perfect for rubbing your fingers over.



Here is what Ellie likes:

  • It is pink and red.  Her two favorite colors. . .she got to pick her colors. 
    • Circle vs. Heart
    • Color choices: white, black, pink, yellow, green, blue
    • Lanyards--length of 18" or 20, hand-dyed or undyed organic cotton 
    • If Ellie had her choice, she would own all of them because this girl likes to accessorize
  • She can chew on it and not get into trouble
  • She can have it in her mouth and still use her hands
  • She can wedge it relatively far into her mouth to get the molars and not choke or gag
  • She thinks she is hot stuff wearing a necklace.
"Look Ma at my stunning new necklace!  I feel pretty oh so pretty!"

KidCompanions has offered to give away one of their Chewelry necklaces or clip ons to a The Chronicles of Ellie Bellie Bear reader.  To enter, you must be a resident of the United States or Canada.  Please leave a comment to this post that includes the necklace you would like if you win--heart/circle, color, length of lanyard, dyed or undyed.  Winner will be drawn at random on Saturday March 30, 2013.





*In writing this post, my daughter Ellie received a free Chewelry necklace from KidCompanions for her review. The views and opinions stated in this post are entirely of my own.*

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Tuesday, March 19, 2013

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.  Instead, I have this:  
I pinched her.  No, just kidding!
She didn't want to wear her backpack or
 have her picture take or sit on the bench.

  • 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 . . .

Or in this case, climb.  This photo above proves 2 things:
1. Ellie has problem solving skills which allowed her to plan out how to reach her destination
2. She truly is not happy all the time.
(3. Vaseline makes great furniture polish and hair gel--Thank you, Ellie for your naptime experiments)

  • 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!  


  • 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.




  • 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



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Monday, March 18, 2013

How to give a baby a bath: Pretend Play

By Ellie



Make sure you wash the baby very vigorously with a wet wash clothe.  Pay special attention to the nose because babies tend to be extra snotty.  Scrub scrub scrub.  Do not worry about letting the baby come up for air.  Baby dolls are amphibious.  



It is permissible to multi-task during bath time.   For instance, The Wiggles provide a great source of entertainment.  Just be sure to keep your hand on the baby while in the bath tub.  "hot potato hot potato.  potato potato potato.  cold spaghetti cold spaghetti"  What?  Oops.  I got distracted by The Wiggles.



When bath time is complete, don't forget to smother dry the baby. 



It is really much more efficient to bath all your babies at ones.  It saves on water.  In fact, oftentimes I like to climb on in with the babies.  The more, the merrier.  Wait?  What do you mean that one baby can't get wet?  It's not a bath baby?  Well what is that supposed to mean? Ooops.  




Most importantly, don't forget to give you baby lots of love and snuggles.
  


It has been wonderful to watch Ellie's playing evolve over the past year.  While she still loves building blocks and putting objects in buckets (or the freezer, or the dishwasher, or random drawers), she is starting to incorporate pretend play into her daily routine.   Right now, her babies are her absolute favorite.  Baby gets a bath.  Baby goes potty.  Baby gets yogurt (yes, real yogurt from a real spoon--hence the introduction of the bath).  Baby has her heart and temperature checked.  Then baby gets thrown across the room.  hmmm.  Nonetheless, I feel as though I have watched Ellie blossom from a baby into a toddler into a preschooler.  What do your kiddos like to do?
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Saturday, March 16, 2013

Continued Fear and Unparalleled Love

Ever since Ellie's ENT appointment last week, I keep going back to an old post of mine--Overwhelming Fear Over a Little Girl in a Pink Dress.  In the past 3 months, both of Ellie's ear tubes have fallen out and the right ear is already full of mucoid fluid.  Her hearing is affected.  She has suffered from chronic adenoiditis since January and they are obstructing her airway.  As are her tonsils. This means that next month, my little Ellie Bear will under go the trifecta of ENT surgeries--Tonsil removal, adenoid removal, and the insertion of ear tubes (her 4th set of tubes).


Oh you mean, these tonsils????
This photo was taken 1.5 years ago.  Those little bad boys have nearly doubled in size.  


I know that a T & A and ear tubes are minor surgeries, but they are still surgeries and this is my daughter!  Those old feelings of fear creep into my mind.  Paralyzing me.  I just want to hold my little girl close and protect her.







Overwhelming Fear Over a Little Girl in a Pink Dress
*a re-worked post from June 2012 with some new photos*


The Little Girl in the Pink Dress. . . Ellie Bear. . . My Love, My Life


My daughter is so beautiful that it hurts.  She is so amazing, so precious, and just down right sassy that my heart is over flowing with love for her.  How is it possible that she is my daughter?  She is a gift.  A priceless gift.  And I fear that I will lose her.  That she will be taken from me all to soon.




Is this something that all mothers feel?  Is this why mama bears are so ferociously protective of their cubs that they will kill a human or another animal that trespasses too close to their family den?



When Ellie was a little over 6 months old, when she went into anaphylaxis due to eating a small amount of infant oat cereal.  A surprisingly rare allergy.  I drove so fast to the nearest hospital and by the time I arrived, her little lip was swollen and she was gasping.  A high pitched squeak was released with each breathe.  I fear for her life.  I later on felt a chest crushing fear every time a little child walked by with a Cheerio.  A cheerio could kill her.  Those infant puffs could kill her.  Thankfully, she has outgrown this allergy.



When I watch my precocious little adventurer climb that 2-story playscape, I have moments of mommy panic.  What if she falls and breaks her neck?  Yet, I know I need to let Ellie develop her independence, test her boundaries, and practice her gross motor skills.

Every time I am in the car and I look back to see an empty car seat, I have a brief moment of fear. Oh right, the car seat is empty because I have a babysitter or she is home with Andrew.




Then there are those scarier times when Ellie has her routine blood draw.  Her complete blood count [CBC] is routinely measured to look for signs of leukemia.  A cancer that could ravish her body and could take her from this world, from me and Andrew.  A cancer, that while rare, is more common in children with Down syndrome.  Oh how my stomach drops and my heart freezes as I hear the nurse on the other line calling with the results.  Oh how my huge sigh of relief could be heard across Texas when I hear that "everything is normal".



Then in June, when I rushed Ellie to the ER at the recommendation of her pediatrician to rule out meningitis.  Again, adrenaline seized me and fortunately it all turned out okay.

Or just this past Valentine's Day, when my little spider monkey decided to sky-dive off the side of a chair, bonked her head, cried, stopped breathing, and then seized.  It was Ellie's (and my) first ambulance ride.  I stared in horror as I witness my baby continue to have absence seizures the entire way to the hospital.  Yet, again, her guardian angel worked over time for her.




Facebook and the internet are dangerous places.  Facebook and internet forums can be excellent avenues for support and yet, they are also where I learned about another little girl Ellie's age diagnosed with leukemia.  They are where I learned that a little cousin was in a horrendous car accident required multiple surgeries to realign her shattered bones.  It is where I saw my friend's little boy miraculously survive Steven-Johnson's Syndrome after having a rare reaction to an antibiotic.




I have seen too much.  It is my own fault for opting to work early on in my career as a pediatric intensive care unit nurse.  Many of the accidents and illnesses that I have encountered during my years as a nurse were rare incidents. They were unlikely and yet, they serve to remind me just how fragile life is.

This is my absolute most favorite photo of me and The Bear.  





I never knew it was possible to love someone so much, with every ounce of my being until I became pregnant. In those first few moments when I saw Ellie before the nurses whisked her away, I knew that life would never be the same.  Yes, I have a fear of losing my little girl and yet, it has made me forever grateful for each moment that I spend with her.  Tell me, am I the only one who has this fear?  Hold you little ones close and whisper those sweet words of I love you.



***


Yes, The Chunky Chicken does own quite a few pink dresses.
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Thursday, March 14, 2013

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.