Wednesday, October 31, 2012

A Girl with Many Names

My daughter has many names:

Ellie 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!!!


Tuesday, October 30, 2012

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

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.


Monday, October 29, 2012

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.


Sunday, October 28, 2012

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.


Saturday, October 27, 2012

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!


Friday, October 26, 2012

The Tackle Hug

Once upon a time, there was this:

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


Thursday, October 25, 2012

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!


Wednesday, October 24, 2012

The haircut, the drama, and survival

Chick-A-Boom is typically a sensory seeker. . . unless her head is involved. . . especially her hair.  Then she is a sensory avoider.  Recall bathtime desensitizing.

Her hair.  You cannot touch it, you cannot wash it, and you certainly cannot comb it without a complete screaming meltdown.  It sounds like I am torturing a small sea lion.  Or rather, a large sea lion.  The screaming protests are so loud that Andrew checks on us during bath time.


Have you ever noticed that her hair tends to be in a rubber band on the right side?  Always the right side?  There is just something that bugs her about the left side.  The bows, those only last long enough for the pictures.  That is because of her sensory issues.

I am too busy doing very important things to show you my new haircut.

Now, imagine venturing out for a haircut.  The tip is significantly larger than the cost of the cut.  I leave a ridiculously large gratuitous tip so that we may be allowed back into the kid's specialty hair salon twice a year.  Yes, twice a year.  Any more than that and I fear the salon may ban us and Ellie may never forgive me. She screams.  She stands.  She twists and turns.  She throws the water bottle.  She will not sit on the car/pony/unicorn.  She will not watch their movies.

Last week, it was time.  I put it off as long as possible.   It started to get really really really scraggly.  She started chewing on it.  Applesauce was getting matted in it.  This meant more hair washings and more combing sessions.

Therefore, I started Operation: Mommy Cuts Ellie's Hair

The tools:

1. Booster seat with T-straps aka restraints.  Oh yes, I restrained her.

2. The double chocolate chip cookie--LARGE for it must distract her for the ENTIRE hair cut.  If her mouth is full, I cannot be bitten.

3. Signing Time on the iPad = distraction

I do anything for cookies and Signing Time!

4. Vodka.  For me.  Just kidding!

5. Lots of detangler. As in a whole bottle.

6. Tequila.  Again, just kidding, but I thought about it!

Oops!  How did this get in here?
7. M&Ms.  For me.  NOT kidding.  A whole bag for decompressing.

8. Fabric shears.  I do not recommend this.  I am going to invest in hair cutting scissors.

I did it!  Yes, I did my own hack job on my little girl's hair.  It looks, well, okay.  Acceptable.  Not fabulous.  I messed up the back a little, and tried to make it looks like mine.  You know like I meant to layer it a bit!  The important part is that Ellie Bear SAT through the entire cut.  She ate her cookie and watched Signing Time.  She did briefly try to look at me when I trimmed the sides, but that was it.  I did it and she survived!  Her ears are still attached!  Five inches were cut off (hey, I need to make it several more months before the next hack job).

So, uh, I had a little incident with the back and tried to make it look like my hair to cover it up.  Grr, straight hair.  That is the only good thing about curly hair--you can cover up errors.

*October is both Down Syndrome Awareness Month and National Sensory Awareness Month.*


Tuesday, October 23, 2012

Ellie Bear 101

I know that October is Down syndrome awareness month and that I should theoretically be writing about, well, Down syndrome, but since this blog is actually about Ellie Bear and her life is not just Down syndrome, I am sharing a few tidbits about my delightful (and ornery) little Bear-Bear.  Whew, that was one long sentence and I am certain my punctuation is incorrect.

All about the Bear:

1. Ellies likes to fake sneeze.
I am totally counting a-choo as one of her spoken words.  It starts out sounding like a ear shattering scream "AAAUUUUGGGHHH!" and then ends with a hard K sound [augh-k!].  She likes to perform her fake sneeze during the Music Together song "I'm Freezing" as well as after Daddy sneezes, she sneezes, and random strangers sneeze.  She does not, however, fake sneeze after me. The first time she faked sneezed, I was driving and nearly hit a guard rail because of the exaggerated "AAAAAAAAAAAAAAAAAUGH!"

2. If chin-ups were an Olympic sport, Ellie would win the gold.  She would also win in a swing and sliding competition.

3. Ellie has an obsession with her toy kitchen utensils.
She feels the need to place the spoon, soup ladle, strainer, and spatula in her purse.  She has also started to add her play phone to the purse as well which makes more sense to the me than the utensils.  This utensil-filled purse goes with her to the park, to restaurants, shopping, play dates, and even to bed.  She is a lady who likes to be prepared for any kitchen emergency.

4. Sandwiches = Quiznos Flatbread
Just the flatbread. No meat.  No cheese.  No other bread products.  No other flatbreads.  It must be flatbread from Quiznos and eaten at Quiznos.  None of this take-out nonsense.  She likes to dine in style and be seen by her many admirers.

5. Ellie has a horrendous temper.
When The Diva is angry, she turns beet red and screams so loud and with her mouth so wide open that you can see her large tonsils kissing.  She throws.  She chucks her food, her plate, her cup.  She used forcefully knock over her little white chair until it landed on her foot.  Now, she daintily lays the chair on its side.  Then, she looks for more items within her reach to throw.  I just ignore her.  When she is done, she cleans everything up.

6. Crayons are to be eaten like carrots.
The correct eating order would be red, orange, black, green, and then if nothing else is available, purple.  I do mean eat.  Not bite.  Not chew.  EAT.  If crayons are not available, chalk will work as a fine substitute--preferably pink or blue, but will settle for green.  Ellie will actually sign "color" and then sign "red".  When you give her the red crayon, she immediately starts to eat it.  I would love to know what she is truly thinking because at this point, I assume crayons = food group.

7. The Chunky Chicken is the master of hide-and-seek. . . as in hiding objects and leaving us to find them in random places.
I once twice three times found Ellie's beloved blankie in the freezer.  I found her mega blocks in the washer.  Yes, I did accidentally wash them.   One time, I found the remote to the TV in a small hole in the wall (this hole happened to be, unbeknownst to us, hidden behind a strip of wall paper that our dog removed with her teeth).  Play utensils and shoes rest outside the dog door. . . and the time Ellie went outside the dog door.  Then, there was Miss L's iPad.  The Devious Little Thing hid that expensive electronic device under a couch cushion.

Apparently the stuffed puppy had to take a potty break.
Yes, my baseboards are that dirty. 

Life is never dull when Ellie Bear is around.  She is a treasure, a treat, and a little stinker.

*This is the first installment of 21 Things About Ellie for the 31 for 21 Blog Challenge.

Happy Holidays

May you all have a wonderful, safe, healthy, and relaxing Holiday season full of laughter, love, and copious amounts of coffee!