Hold the Phone! Pretend Play

It has happened.  I am shouting it from the rooftops.  Just as I was lamenting about Ellie not "getting" pretend play, I spy this:

Do you see?  Do you see?  Huh? Huh?  The Chunky Chicken is pretending to be on the phone!!!!!!  Oh and the fun part?  She is using an old remote to act as a phone.  That's right, baby.  Pretend play.  Super smart Ellie Bear!

What have your little ones being do lately?

Sharing Sundays: Flight Platform Living

A double post this Sunday.  Everyone, head on over to Flight Platform Living right now! My buddy Jane is helping out dear Tabitha.  You know, my daughter-of-the-heart?


Thank you Jane for all that you are and all that you do!

http://textgeorge.blogspot.com/2011/11/sharing-sunday-tabitha-and-lilianna.html

The R-Word, The Descendants, and George Clooney

It feels as though I am forever fighting an upward, never-ending battle to abolish the word "retard".   Society's ignorance is forever amazing me.  Just when I think we are moving in the right direction (i.e. Lauren Potter's role in Glee setting a positive perspective on Down syndrome), we take a landslide backwards.  Between Democrat H. Braun, The Change Up, and many other movies and TV shows, the latest should really be as no surprise to me.  The Descendants.

I will admit that I have not watched this George Clooney movie.  I wanted to.  I typically enjoy George Clooney movies, but I am grateful that I was warned about what to expect.  My friend Jennifer over on Cowgirl Up! sat down expecting to enjoy a movie with hottie George Clooney only to be slapped in the face with ignorance and insults.   Jokes using those with disabilities as the punch line.

Here is what she heard:

Matt King ( Clooney): You are so retarded


Sid (Nick Krause): That's not nice.  I have a retarded brother


Sid : I'm just kidding.  I don't have a retarded brother. Sometimes when old people and retarded people are slow, I just want to make them hurry up.

Are you for real?  Making fun of group of people who cannot always stand up for themselves all for the sake of a laugh?  Was the above conversation pertinent to the movie?   I think not.  Shame on you Clooney and Krause.  Shame on you.

It hurts in more ways that I can say.  I think of my Aunt Peg who also has Ds and her friends who also have intellectual &/or physical disabilities.  Imagine them going to see The Descendants to drool over Clooney only to hear the above conversation.  Do your think she and her friends do not understand?  They do!  It is insulting and hurtful.  It is unacceptable.

Over at Stop Disability Slurs, we never get a break.  We have more letters to write and I encourage you to do the same.  Speak out and be heard.  Speak out and make a difference.  United, we can make a change to end the word.  Let's make the r-word RESPECT.

Movie: on Facebook https://www.facebook.com/pages/The-Descendants/

Director & Writer:
Alexander Payne
William Morris Agency
1 William Morris Place
Beverly Hills, CA 90212


George Clooney:
George Clooney Management
Smoke House
4000 Warner Boulevard
Building 15
Burbank, CA 91522
(818) 954-4840

Nick Krause: I am working on this.


Disclaimer: I have not watched The Descendants so all information with regards to the offensive material in the movie comes from a trusted blogging buddy at Cowgirl Up!

The First Haircut

There is just something so bittersweet about a baby's (okay, a toddler's) first haircut.  Maybe it is the fact that that baby hair from birth is snipped away to the floor.  Or maybe it is because my daughter is old enough to have a haircut in general.

Ellie's hair was/is ridiculously long.  When she was born, she had a full head of hair.  Later she looked like a Muppet with wild, crazy wisps.  Two years flew by and her baby fine hair grew to be halfway down her back.  While not a bad thing, it made washing and combing rather difficult given The Bear's sensory issues.

Muppet Baby: notice her ever sparkling personality already shining through at 4 months

While ordinarily I planned to cut her hair myself, I realized that Ellie is one strong Houdini and thus opted to pay someone the pleasure of hacking off The Bear's locks.  Good thing I did because Ellie is a feisty little thing who loathes anyone touching her head, face, and hair.  I would have accidentally gouged her eye out with the comb or scissors.

Three inches chopped off and she still has longish hair.

Goldilocks: Before

After

Angel Tree: Tabitha & Pure Love Give Away

So many times a day, this sweet face flitters through my mind.

Tabitha 

My heart then hurts so bad.  It hurts because I still feel like her mama and yet, I cannot possibly be her forever family.  It hurts because she is still not on the My-Family-Found-Me page.  I wonder, in earnest, where is her forever family?  How can others not see what I see?  How can she be left in an orphanage with each day bringing her closer and closer to a life in a mental institution?  To a life a living in a crib with tiny bits of food and poor medical care.  To a life without love and a family.

I love Tabitha so and yet, I have no idea how to go about finding her a family.  What to do?  Maybe you can help me?  Please?  Awareness is key so I am begging all of you to get the word out.  Share this post on Facebook or Twitter.  Post her picture because then maybe, someone, her forever family, will see her and KNOW that she is theirs.

Tabitha is one of many children featured on Reece's Rainbow Angel Tree.  The purpose of the Angel Tree is to raise $1,000 for that child's adoption grant.  For a $35 donation, you will receive an ornament with the child's name on it.  You can also give ornaments as gifts or you can just donate.  To learn more about the Angel Tree or see some of the children that also need homes, please visit here.

Finally, there is another Pure Love Give Away going on over at Patti's A Perfect Lily.  A bunch of us with a love for helping orphans unite with there forever families have donated some really cool prizes so head on over and learn about Ty (I wrote about this lovie last week) and Robyn.  Ty's family still needs $4,000 and they just received their travel date of Dec. 3rd.  Robyn is still in need of a family.

Who's Ready for Ribs. . . Er Turkey

It looks like someone is excited for Thanksgiving tomorrow.

Of course, it wouldn't be a Texan Thanksgiving without deep-fried turkey and Andrew's famous ribs.  Yum!

Thankful for Spoon Feeding

Ellie Bear has come a long way in the realm of self feeding.  I wrote about some fine motor exercises here that discuss how to perfect the scoop and the flick of the wrist.  It also helps to use sticky foods.

Good foods for spoon feeding:

Oatmeal (good thing we do not have that oat allergy anymore)

Yogurt

Applesauce

Soy Yogurt + Rice Cereal = Sticky Food

I like to mix in infant rice cereal to the yogurt and applesauce to make it super sticky.  I also use the Munchkin suction cup bowls so that Ellie doesn't have to worry about the bowl slip sliding around the highchair tray.

Not even a few months ago we had this:

She is giving herself a facial and satin hands

And we had:

What do you mean the spoon goes in my mouth?

Now we have:

Verses this:

I have to make sure I got it all.

Okay there isn't much difference.  

Now days Ellie can pretty much spoon feed herself with minimal assistance.  She can still be a little messy at times, but nothing like before.  Most of the mess occurs if she puts the empty bowl on her head, which happens too frequently in my opinion. 

If you notice, Ellie has figured out that if she leans forward towards the bowl, she has a lot less distance to cover in getting the loaded spoon into her mouth.

Stop taking my picture, Mom!

I mean it!  This is SO embarrassing!

All done.

Do you see how CLEAN she is?  Do you?  Do you?  Look at that Super Bear!

Little Triumphs, Big Celebrations

You know what I love?  I love how tasks that seem so tiny, small, and insignificant to typical developing children call for great, huge celebrations when Ellie accomplishes these tasks.  For Ellie, the small, seemingly unimportant things are actually huge mountains of achievement and that calls for a big happy dance.

Did somebody say "dance"?

Everyone knows just how worried I am out The Bear's speechlessness.   Her lack of communication.  Her poor motor planning for signing.  Well, I am still worried, BUT we experienced several tiny triumphs (aka HUGE milestones) in speech therapy this past Thursday.

It's Super Bear!

It all started with this old Fisher Price car ramp.  It comes with 3 cars of different colors.  My Chunky Chicken signed "car".  REPEATEDLY.  As in more than once.  As in with consistency.  As in with purpose.  As in without prompting.   HUGE!

Mama seems pretty excited so I will paste on my big happy smile.  Check out all of my teeth.

Are you ready for the next bit?  Ellie Bear tried to sign "blue", "orange", and "green".  Now mind you these clumsy hand movements didn't really look like the signs, but it was a definite attempt at signing.  This little game of colored cars proved that Ellie does indeed know her colors (okay, I suspected this already, but now there is proof with signs!!!!).

Yep, the blankie is still around being loved to the point of destruction.  

Our speech pathologist K and I both noticed that Ellie Bear-Bear demonstrated increased attention to a task.  She worked hard to get puzzle pieces into their correct spaces.  Stubborn Little Miss stuck with it rather than wondering off to climb furniture.  Not only that, when quizzed, she knew which shape was a pentagon.  For real!  A pentagon.

Perhaps I will be a mathematician and specialize in geometry.  Pentagons to be exact!

So while all of these tasks may seem tiny in the whole scheme of things to those with typically developing two-year-olds, these are all amazing feats for my daughter.   You have one proud Mama Bear over here doing a great big cheering happy dance.  Super Bear!

Sorry about all of the caps and exclamation points.  I am just SO PROUD and EXCITED :)

Ty

There is one fundraiser that I would like to write about today.  As always, this fundraiser shares one goal--to help orphans in Eastern Europe.  These children spend their days in orphanages because they are deemed "less than worthy" or "unlovable".  Around the ages of 5 and 6, they are transferred to mental institutions.  This is unacceptable and unfathomable, but it does indeed happen.  Fortunately, many people, many who are my friends are working hard to save these children from the horrors of mental institutions.

Today's featured family is the Kehm family.   You might remember Peter from the Pure Love Give Away.  Did you know that Peter is going to have another brother?  One from Eastern Europe?  The Kehm family is not only rescuing Peter, but also Ty!  It is only a few thousand more dollars to save another orphan, but that is a couple thousand that the Kehm family does not have.  My dear friend Christie is a new Scentsy rep and is donating a portion of the proceeds towards Ty's adoption.  This is just in time for all of your Holiday shopping.  Just think, purchase a few Holiday gifts for family and friends AND you help unite an orphan with his forever family!

Ty

To see the details, click Scentsy-We Make Perfect Sense.
To donate directly for Ty & Peter, click here.

Top Parenting Blog

I was completely taken by surprised when I opened up my email to see "You've been selected as a nominee for the Top Parenting Blogs Award".  This award is through eCollegeFinder, which is an online education resource that represents over 120 online institutions.  Many of the students who frequent eCollegeFinder are mothers and fathers who have returned to school.  I can only imagine how difficult it is to juggle a family and college.  I can only imagine the stress and the need for support these students face.

This nomination is such a great honor and I would like to share with you the answers to the two questions eCollegeFinder has asked.

How would you describe your blog to readers of our site?

The Chronicles of Ellie Bellie Bear is a parenting blog written by a pediatric nurse practitioner and mother who is striving hard to be the best parent that she can be to her daughter Ellie who happens to have Down syndrome and Sensory Processing Disorder.  The Chronicles of Ellie Bellie Bear illustrates day-to-day living and includes medical information, inspiring stories, and the amusing antics of a toddler, a DIY husband, and 3 frisky pets.

What inspirational words or advice can you provide our student parents?


My advice is have reasonable, but high expectations.  You are stronger than you think so do not sell yourself short.  When I received Ellie's diagnosis of Down syndrome and later on Sensory Processing Disorder, I was lost, confused, and overwhelmed.  However, I rallied and tried to be the best parent that I could possibly be.  Watching my daughter as she worked so hard to hold a toy, to crawl, stand, and then walk, I learned, from her great determination and motivation, that she and I can do anything.  Yes, things are difficult at times, but the reward is amazing and worthwhile. Try your best, have high expectations and you just might be surprised by all you can and will accomplish.

PEC: Picture Exchange Communication

Given my and Ellie's frustration with Ellie's difficulty communicating, we recently started using the PEC or Picture Exchange Communication system.

What is PEC?  
The Picture Exchange Communication is a system that helps individuals with difficulty speaking communicate to get their needs met.  It is exactly as it sounds--pictures of everyday items such a food, toys, people, etc are used to communicate a message.  For instance, the child would take a picture of a banana and present it to "the listener".  The listener would then give the child a banana in exchange for the picture.  Eventually, the system can be expanded so that the child can make choices between pictures (i.e. cracker vs. banana).

In order for this system to be successful, the child must understand the concept of "taking turns". That is knowing to hand off the picture to another person to receive the item in the photo.

Why PEC?
As you know, Ellie has great difficult making sounds.  She also has trouble signing (this is related to poor motor planning).  Her signs are very gross approximations that only those closest to her may understand.  Yet even then, sometimes Andrew and I have no idea what she is signing.  Many of her signs look exactly alike--duck, milk, orange.  This frustration leads to SCREAM.  We do not like SCREAM in our household so J, our developmental therapist suggested adding PEC to our bag of tricks.

I must admit that I was bit skeptical at first given the fact that we tried this months ago and Ellie just could not grasp the concept of exchanging photos for items.  She would just hold onto the picture, play with it, mouth it.  I was also wary due to Ellie's propensity to mouth everything.  What if she just mouthed the picture the whole time? This was one of our biggest problems when we tried to use PEC previously.

Where to start?
First, it is important to find out what motivates your child.  For Ellie, I presented her with a variety of toys and looked to see which were the top three toys she typically gravitated towards.  I then started to place those toys high up or in difficult to open containers so that she would have to "ask" for them.  Her favorite items: the iPad (which I already kept out of reach), her blocks, and her nesting cups.  I took pictures of these three items. Placing velco on the backs of the pictures, I then attached them to a small poster board.  This poster board is kept within Ellie's reach and can be easily carried from room to room.  Eventually I hope to get a binder that will hold all of the pictures.

PEC Board

Implementing PEC.
We started the PEC system when J was here for a therapy session.  We corralled Ellie and secured her into her high chair so that she couldn't escape.  She is feisty like that.  We presented only ONE picture to her.  We were trying to teach her about "turn taking".  I used the iPad picture.

Mmmm.  Technology

Of course she mouthed it.

Here Mom!  Give me the iPad.  NOW!

Then she wanted the iPad so bad that she handed the picture to me.  Now, very stoically, I handed her the iPad while saying in a neutral tone of voice "iPad".  We repeated this for a while and guess what, the mouthing decreased.  She got it!  She knew that in giving me the picture of the iPad, she would be rewarded with the iPad.

Next, we introduced 2 pictures.  I gave her the iPad picture and the block picture.  Ellie, of course, mouthed the new picture because you know, it might taste different than the iPad one.  Ellie then chose the blocks.  Same thing as the iPad.   You calmly take the picture while handing her a few blocks and say "blocks".

I am shocked that it is working.  Soon we are going to move into food items.  Ellie still doesn't recognize that she can go to the poster board, grab the photo of the desired object off of it, and present it to me, but I have hope it will happen soon.  We are still going to use signs with her, but the PEC is a nice adjunct to the signing.  Am I still frustrated?  Yes, at times.  Is Ellie?  Of course. Yet the PEC now allows Ellie to express some of her wants.

Forget Me Not Friday: New Pics!

I have just seen new pics of 3 orphans very dear to my heart.  They are still in desperate need of families.

Many of you may remember this little lovie, Francine.  Now just look at her!  What a beauty!

Girl, Born May 2006

Francine has been waiting a long time for her forever family.   She was born with CP, but you can see how well she is doing and how strong she is physically.  She is an orphanage favorite.
 

From her medical records:  cerebral palsy, spastic diplegia, delay of psychospeech development

From a family who visited with her in November 2010:  I recognized Francine at 16, and we actually met her last November. I included a photo, and although it's not the most flattering shot, she was in the middle of singing in the fall pageant. She was adorable, and Tom and I both fell in love with her. She can walk without assistance, although she is unsteady. But, she was able to follow the dance routine pretty well. She is smiley and very sweet. She waved a lot to us when we saw her during our visits. One of the nannies always took her outside to play with the other kids, and you could tell she is well liked by everyone. Even some of the other kids brought her toys and talked to her during playtime. At the time, I took a photo of her legs to help show her disability, but I didn't see her on RR when we got home. I forgot all about it until I saw her on there today.

From a family who visited with her in August 2010:  "I just wanted to say that Francine is mobile and doesn't let her CP stop her!   She was a very sweet little girl and her face beamed when she smiled!  She has beautiful light blue eyes and dark hair.  I know she would make a wonderful daughter.  If anyone asks about her I'd love tell them more about her. "

Just look at how much sweet Elden has grown!  That smile of his is just infectious.

February 2007
Gender: Male
Eyes: Brown
Hair: Dark
Character: calm

From a missionary who visited with him recently:  Elden is very lively, joyful and playful boy. He loves games and jokes. He is the favourite of kids and personnel at the orphanage. Elden is a special kid. Before he was weak but due to attention of caregivers and lessons he made a great progress.   He become strong and now quickly learns everything new. He as well starts walking.

As he is growing, Elden has developed alopecia, which is premature hairloss.  It is quite common for kids with Down syndrome, even REECE has it!  It doesn't hurt, he will just be beautifully bald.  Yay, no traumatic haircuts! 

LOTS of photos available!!   Single moms welcome!

My Darling Tabitha!  Look at how much she has grown. Oh how I cannot believe no one has come forward for her.  My little daughter-of-the-heart.  

Girl, born May 2010

Eyes: Grey

Hair: dark brown

Character is calm

Hydronephrosis, pieloectazia of the left kidney, inborn heart defect. 

For more information on these children, on other children, or how you can help, please visit Reece's Rainbow at www.reecesrainbow.org

Thankful Thursday: Even the Smallest of Things

I really need to be more consistent about my Thankful Thursdays because I find that they are really helpful in getting through a day like today. . .

Today I am thankful for:

Coffee!

Yes, I know I should say how I am thankful for my hot, sexy, helpful husband with the perfectly formed buttocks, but today I am going with caffeine.  Not that I am not thankful for Andrew.  Or Ellie.  Or my family and friends.  Because I am!  When you have a day that starts off like today, it is the caffeine that helps hold you together.

I pride myself on being on-time.  Goodness, I am usually early.  I leave the house to allow time to replace Ellie's shoes and socks upon reaching our destination.  Oh and throw on her weighted backpack for sensory input (this prevents her from running around buildings like a wild banshee.  In theory.)  I did not however plan for my dog not doing her business this morning.  Here I am standing outside waiting for the princess puppy to do her royal business before heading off to speech therapy.  It is cold and I am not wearing my jacket.  The Sophie Dog must know I am running behind and that my hands are turning purple because she decides to inspect every square inch of our backyard as though each and every single leaf is new to her.  Do you think the Princess Puppy Paws did what she needed to do?  Nope.  Thankfully, she did not complete her business in the house while we were gone.  

Of course during the puppy dog's escapade, Ellie Bear did some business of her own.  Complete with a spit-up.  Already delayed, I am now in the process of a full-blown clothing and diaper change and wrestling a toddler all while trying to get ahold of the speech therapy place to say we are going to be late.  I was going to be late.  Late.  We are never late.  Grrr.  Finally, Chunky Chicken is dressed, in her jacket, in the car.  I get halfway down the street and discovered that someone was not quite done refluxing.  Miss Spits-A-Lot managed to get her spit up past her bib (yes, she wears a big in the car for this very reason) and all over her jacket and outfit #2. Apparently I need to start carrying around spare jackets. Pulling over, I take a big chug of my delicious Southern Pecan coffee and sigh.  I have my coffee.   I can make it through the day.  Or at least through the morning.

Which brings me to the second thing I am thankful for:

Naps!

Precious baby toddler naps and mama bear naps.  Sometimes, you just have to set aside that housework (yeah, like that ever gets done), bill paying, cookie baking and climb into bed for a little slumber.  Do not forget the fuzzy socks.  Nothing like snuggly blankets and fuzzy socks to help in the napping process.  Glorious!

I would also like to say that I am thankful for snack-traps, but today I learned they can be rather messy when a frisky toddler removes the lid and dumps food items everywhere.  Everywhere being the car.  How is it that I can have a hard time getting the lid on and off, but little Miss Stinker Pants can just pluck it right off? So no thank-you snack traps.