Happy Valentine's Day from Ellie

Ellie Bellie Bear here.   I was informed that there would be candy if I sat for these pictures.

Well, I sat like a good little Bearity Bear wearing a tutu nonetheless and now I want my M&Ms.

Look!  I didn't even cry.  I even tried so smile in one of them.

looks like mama went all Photoshop on me.

What is this?  A cat!  A cat invaded MY photo shoot?  Shoo shoo, Amelie!  I am the star of this show.

What is that you say?  There is a Tama Kitty in the window behind me?  In every shot you say?  Humph!

I have no idea what this heart thing is.  I should throw it.  Let the wind carry it away from me.

So. . . about that candy.  I prefer the red and oranges ones.

Oh yeah and Happy Valentine's Day to whoever this Valentine's person is.

-The Bear

Kinetic Art, Michael, and the Kindness of Others

I signed onto Facebook at the end of last month and I saw it.  Beautiful splashes of color combined in such a way that it spoke to me.  It was beautiful and I had to have it.

Skinny Dragon.

Skinny Dragon by Michael Wasserman

For many months, I have long coveted Michael's art creations.  Marveling at his strategic use of color and talent to use scraps of paper to create a 3-D picture.  His ability to turn something abstract into an underwater escape or his interpretation of Peter, Paul, and Mary's "Puff the Magic Dragon".  You see, Michael is an artist.  A successful artist.  That I know of, every piece of artwork that he has placed up for auction with Kinetic Art has sold.

I had never bid on a painting before.  Bidding is a dangerous activity for me.  I get nervous.  What if someone outbids me?  Do I keep going?  Do I just wash my hands of it?  Or do I keep going until I have bid more money than I have?  I am competitive like that.

Yet, that beige painting with fish and a dragon tugged on my heart strings.

You see, Michael could make himself rich off of his paintings.  Instead, he generously and selflessly gives back to the community.  He places his art on his facebook page Kinetic Art with the rule that the winning bid must donate the money to the nonprofit organization of their choice.  The organization must serve those, adults and/or children, with intellectual disabilities.  People like him.  People like my daughter Ellie.  People like my beloved Aunt Peg.  Michael wants to give back and he wants to make sure that those with disabilities continue to receive the assistance that they need.

Back to Skinny Dragon.  I had grand plans you see.  I wanted to honor my Aunt Peggy who passed just before Christmas.  If I held the winning bid, the funds would go to the St. Louis ARC.  The St. Louis ARC was so good to Aunt Peggy.  She lived in Rainbow Village, a group home for those with intellectual disabilities.  Peggy loved her home and those who worked there loved her.  When Peg moved into assisted living and into hospice, the workers from Rainbow Village continued to visit her.  They brought CDs so that she could continue to rock out to John Denver.  One of them even brought her guitar because she loved live music.  When Peggy passed, they were devastated.  They made sure that nearly all of the Rainbow Village residents attended her funeral.

I watched this auction of 4 amazingly, breathtaking paintings take place on Michael's Kinetic Art Facebook page.  I watched as the bids climbed higher and higher.  So high that I knew that Skinny Dragon would not be ours.  I entered my last bid.  The max that we could offer.  The last bid for Peggy. Certain that we would not win.  Michael's artwork is that awesome.  I knew it would go for a much higher price and that was okay.  Remember, the funds would be put to good use.  To a deserving charity.

Anna Theurer $xx. This is the highest I can go, Michael. It is my favorite painting of yours (and you know how much I LOVE your art) and the funds would go to the St. Louis ARC. The ARC was so good to my Aunt Peggy.

Something happened.  Something amazing.  Something that reminded me of the innate goodness of others.

The big contender withdrew his bid from the Skinny Dragon.  He walked away so that Peggy would be honored.  He conceded.  With tears streaming down my face, I watched as others commented on the Facebook auction that they too would follow in this young man's footsteps and not bid.  All of those people honored Peggy.

This past week, I received my letter from the St. Louis ARC acknowledging my donation in honor of Peggy and in tribute to Michael.   It may not be the largest donation they have ever received, but I do hope that it does make a difference in providing services to those with special needs.

A few days ago, a large, padded envelope was delivered to my mailbox.  As I carefully tore open the envelope and peeled back the bright-colored tissue paper, there was Skinny Dragon staring up at me.  A painting to remind me of Aunt Peggy, Michael, and those kind strangers from the auction.  Tears welled up in my eyes, threatening to spill over onto this beautiful work of art.

Because for me, this painting is a symbol.  A symbol that all of us, no matter our disABILITY, can give back to the community.  That every single person has a unique gift.  A unique talent.  The ability to contribute to society and make a difference.  A symbol that people are innately good and kind.

Thank you.  Thank you so much, Michael, Mary, and those who participated in the auction (you know who you are).  

I am saving up for the next Facebook auction, which coincidentally starts Feb. 12th.  Be sure to stop on by Michael's FB page and marvel at his amazing artwork and perhaps think about entering a bidding war!

https://www.facebook.com/michael.wasserman.562?fref=ts

Michael was featured on the National Down Syndrome Society's My Great Story Campaign and was featured in the Times Square Buddy Walk Video in 2010

Finger Play: Ellie and The Wheels on the Bus

Imitation.  Finger Play.  Songs like Itsy Bitsy Spider and Wheels on the Bus serve more than just a means to entertain a young child.  They help increase attention span.  They help hone in on those fine motor skills.  They help with speech and communication.  They help with socialization.

This is a video of Ellie rocking out to Pete The Cat's version of Wheels on the Bus.  To some, this video may not look all that exciting, however, to me, it is amazing.  My daughter, the rockstar.  Her awesomeness captured briefly on my iPhone.

For starters, Ellie is sitting, sort of.  Let me repeat that.  My hyperactive, spider monkey is s-i-t-t-i-n-g!

Typically, I sit (okay, attempt to sit) with Ellie and go through the hand motions with her--round and round, up and down, wah-wah-wah, shhh-shhh-shh, honking the horn, swish swish swish.

In the beginning, I helped her make these movements by hand-over-hand.  Eventually, I would remove my hands and encourage her to imitate my hand movements on her own.  Yet, in this video, my little girl is going through the motions UNPROMPTED.  Yes, she is doing this of her own accord.  This is HUGE!!!!  Her "up and down" has been Ellie-fied so that she is using her body instead of her hands.  During her "up and down", you also notice the she "checks in with me".  This is a big developmental milestone.  You can see where she thought the next movement was the horn rather than the driver's move on back.  You can see where she is rather late in mimicking the mommies on the bus going shhh-shhh-shh, but she does it!  Finally, you can hear her vocalizing.  Yes, making sounds with her mouth.  My non-verbal darling belting out "WAH!" and whispering "ssshhhhh" and at the end cheering with all she's got.

In case the video does not work, here is the youtube link.



Other YouTube videos that Ellie enjoys:

Pete The Cat's- I Love My White Shoes
Brown Bear, Brown Bear What do you see?-song
Phonic Learning Song 3

How I got here: from combat shoes to cowgirl boots

Once upon a time I was born here:

Huh, you don't know where here is?  It is kind of hard to tell with all that muddy Mississippi River water.   krlr, you should know!  Hint: the year was 1993 and sandbags were involved.  A lot of sandbags.  How about now?

Photo courtesy of wikipedia
St. Louis, Missouri

Where I lived with my adorable baby brother

I was looking pretty cute, but I am rather certain my brother had some serious gas when this pic was taken.  Oops, did I just type that for all the world to see?  Scratch that!  Check out that totally stylish rainbow turtleneck I was wearing!  

Moving on! I dressed like this when not primly and properly clad in my little Catholic School Girl uniform:

My poor parents.

These combat boots were steel-toed and red because even a goth girl needs a splash of color:

Sadly these are not my babies, but something similar.  My babies no longer fit me (thank you past pregnancy).
I used to set off the airport metal detector back in the day were you could wear shoes during airport screening.

Then I went off to college here:

Guess where I was?  Let's go Fighting Quakers (guess which college)?  Yeah, I didn't know either until I already donned my red and blue.  Let's go Flyers! Let's go Eagles!  Let's go get a cheese steak!

Where I studied nursing (wearing all white of course, including my ever-so fashionable squeaky white, lace-up shoes) and dressed like this when not in the hospital clinicals:

Do you notice a theme?
This time I added facial piercings and a few tattoos
No, you do not get to see my tattoos.

Eventually, I wondered off to here:

This one is difficult.  Portland, Oregon

And dressed like this:

And worked night shift in a PICU and became involved with the under ground heavy metal band scene.  I made a great roady, especially after I changed out of my Hello Kitty and Teddy Bear scrubs!  

Evilness in the form of a not-so-nice-ex stalked me and I ended back on the East coast to escape his evil clutches in:

The Armpit of America

courtesy of : www.enchantedlearning.com

Oh wait, I mean New Jersey.  Camden County to be exact.  I dare you to look up the crime statistics.  Again, my poor poor parents.  Where I studied more nursing, worked at CHOP (goodness, what a horrible acronym for a pedi hospital!) and dressed as a respectable adult and lost the eyebrow ring:

BONDAGE PANTS!  Oh I miss these bad boys.  Comfy, but not practical at all.  The zippers got caught on everything! (I have a story involving my wicked bondage pants the PATCO subway turn still.  Let's just say it is imperative to be careful with all of those "suspenders" and zippers)

Then this joyful event occurred:

Gorgeous, right?  Tall, blonde, blue eyed AND she is nice.
It was at their wedding that I met my hot and sexy Drew.

There is a soap opera here but to make it a long story short--Canadian-Texan boy meets Jersey girl at St. Louis wedding.  Texan boy thinks Jersey girl is hot (humor me here).  Texan boy says only 4 sentences to "shy" girl.  One year later, girl visits friend in Texas and reunites with boy.  Girl pursues boy, ignoring all possible signs of "he's just not that into you".  Now boy will not leave girl alone. Boy gleefully stalks girl by visiting her in Philly/Jersey every few weeks.  Girl moves to . . . 

You would never guess where I live from this pic.  It was a fluke.  I was fooled!  I actually live in the desert.  As I write this it is 70 degrees. . . in February.  

Which led to a honking, large, double cab, crew max Tundra which was both designed and made in the great Country state of Texas because bigger is indeed better.  Who on earth owns a dinky little sedan or compact car out here?  You can't see a thing between all these trucks!

I promptly traded in my little compact Corolla for this monster truck.
Do you know how hard it was to climb into this bad boy with a wedding dress (and flip flops) on???

Serving BBQ at my wedding because ribs, brisket, and creamed corn are so romantic, clean, traditional, tasty!  

Eventually this she rocketed into our lives--our born and made in Texas baby where BBQ "sause" is mother's milk and ribs serve as teething rings.

After six years of living here, I now have these (and good extra 25 pounds thanks to the delicious Mexican food and BBQ food, and driving everywhere [did you know they have parking lots here?], oh and growing a baby back in 2009):

Of course I had to get red. . . with little metal studs.

There you have it.  I has taken me 32 years, but I am fully Texi-fied, ya'all!

Besides, all that eye liner would have melted off and I would have cook to death in those combat boots and bondage pants!

Looks like Bear needs her own boots.

Happy February-Fun Photo Flashback

My Baby!  Bear was only 5 months old-Feb 2010
(That's my mama in the pic ;-)

Little Miss Sassy!  Her personality was shining through in full force--Feb. 2011
(yeah, those glasses/tiara/heart headband stayed on for 5 seconds)

Still spunky! (yes, she is bare foot and wearing short sleeves.  This is Texas.)--Feb. 2012

Hmmm, I do wonder if Bear will stay still long enough for photos this year?

Happy February!

-A.

Ellie's Chewy Necklaces, Chewelry, and What is that around her neck?!

"What is that in her mouth?!"

one and two and three little chewy tubes!
"What do you mean there is something in my mouth?"
(Top Right: how adorable is that picture?--Ellie with Jack-A-Roo holding hands)

Many of you may have noticed in previous posts that Ellie is wearing one or two or seven brightly colored stretchy necklaces and have asked me what they are for and where to get them.  These necklaces are therapeutic chewy necklaces or chewelry which are used to satisfy Ellie's oral sensory cravings.

These necklaces are great for children who:

• chew on their clothing
• chew on their hair
• chew on objects, toys, furniture
• frequently bite, chew, grind teeth, or fidget
• typically seen among toddlers
• kids with autism, ADHD, ADD, Sensory Processing Disorder [SPD]
• and other developmental or neurological disorders
• need to "wake up" their oral motor muscles for eating

I have written a more detailed post on the various chewy tubes for oral aversion, oral seeking, increasing oral motor muscle strength, and speech development.  These posts can be found here and here.

Ellie has extensive oral seeking behaviors.  She must always have something in her mouth.  She typically has toys, books, paper, writing implements, and even the edges of furniture in her mouth.  She is attempting to satisfy some oral need and she is not teething.   These behaviors have affected her play and they have affected her socially.

"Ellie, we don't want to play with you anymore.  You chew on our toys."  "Ellie ate my book!"

Believe me, I understand because these other kiddos are past the eating chalk stage.  They are past gnawing on toys.  Yet, my daughter is still in that stage and is destroying their toys or at the very least leaving a long string of spittle on their dolls or blocks.  Antibodies anyone?

So you mean biting the playground equipment is not socially acceptable?

The chewy necklaces have really helped Ellie.  She can chew on her necklace while listening to a book.  Yes, she can listen to a book now!  She can chew on it while building a block tower.  She can chew on it while coloring.  Now, mind you, she does need reminders occasionally because those crayons or that playground equipment look(s) oh so tasty.  Yet, all you have to say is "Ellie, use your chewy" and she pops that necklace right into her mouth.

Ellie is a thrower and a climber.  We have lost many chewy tubes due to throwing.  Ellie has nearly injured a few innocent bystanders with a flying P-Tube or Tri-Chew.  These necklaces allow her to chew while leaving both hands free for climbing.

Chewy Tubes R Us: Tri-Chew, P-Tube, Chew-Ease, Chewy Necklace

They are also stylish.  Well, in my opinion they are not, but all the little kids are the playground beg my daughter to share her necklaces with them.  "Ellie, can I have one?  Can you share with me?" My daughter, ever the fashionista. The cool toddler on the block.  The trend setter!

We buy our chewy necklaces from National Autism Resources.  You can get the necklace + bracelet in the color blue on Amazon.com but I am paranoid about the bracelet.  I can just picture Ellie strangling herself with the bracelet.  Plus, my spoiled little Bearity Bear likes to tell me what color she wants to wear each day. . . .er colors.

Goodness!  I know that I have at least two more of these!  A purple and a white, perhaps.

Because one chewy just isn't enough and because the Bear must wear the color  or colors that suit her ever changing mood, we bought our in batches (you can do one, 3, or 7).  Because it would be such a shame to own more than one color and *gasp* be missing one of the colors of the rainbow, we specified our color choice in the "comments" section during the online check out.

For an added sensory punch, place these bad boys in the fridge for a few minutes. . . or if you are Ellie Bear, the freezer.  Yes, she does this herself, Little Miss Independent.

Don't mind me. . . just working on those thigh muscles.

That's right, we own all 7 colors.  Pink has been discontinued much to the Bear's dismay.  So. . . if anyone happens to come across a pink one, please alert me!

What about blankie?  I can still chew on my blankie, right?

Helping my daughter communicate

Ellie signs "bread".  For once, her sign looks pretty close to what Rachel Coleman demonstrates on Signing Time.  Ellie's fine motor skills are improving!

I had her a piece of toast since that is what she typically wants, well at least this week it is what she typically wants.

SCREAM! Throws bread while shaking her head "NO!"  Frantic signing of "bread".  SCREAM!

Yet, I just gave her bread.

Does she really want bread?

Yes, Ellie does want bread.  Just not toast.  Tortilla.  Croissant.  Toast.  Regular slices of bread.  Those are all breads to Ellie.

I wanted tortilla bread, mom!

This same situation occurs with cracker.  Because, you see, any large food item that she does not know the sign for is cracker.  Especially Zone Bars.  Ellie wants to communicate with me.  She is trying to communicate with me.  And I need the power of telepathy.

The breakdowns in communication are hard on both of us.  She gets frustrated and I get frustrated.  She is screaming because I don't understand her and I am feeling like the ultimate mom failure because I cannot read my 3 year-old's cues.

Ellie has learned the PEC system [picture exchange communication].  This communication system has been implemented in her school and in her ABA therapy.  I decided to do my own little Ellie-Bear version.  I used real photos as opposed the the traditional colored line drawings.  Some I took on my iPhone and others I used from the internet.  I should probably warn you that if you google "PECs" you will find some official PEC photos, but also some young men who have photographed their pectoral muscles shirtless.  Just saying!

I got a little overzealous with the laminator and velcro!  Because I laminate A LOT, my hot sexy husband got me a little laminator from Costco.  It was cheap and saved me from frequent trips to Lakeshore Learning which surely would have ended up with me spending way more money on learning tools in addition to using their laminating machine.  The photos that I use are square and I place them onto a 2.25 x 2.25 grid.

I have created a page each in a binder with these PECs--foods, activities (i.e. paints, crayons, chalk, other toys that I hide from her, iPad), places (i.e. Target, Central Market, Restaurants, Big Bounce, Parks).   Now, mind you, Ellie Bear is a big sensory seeker.  The thrill of removing items from velcro is too much for this little girl.  She will remove every single picture and then carry them to another part of the house.  Therefore, I store this binder out of reach.

When she signs and says "eat", I pull out a small strip of laminated paper with velcro on it.  I attach only a few food items (yeah, I don't want her pulling off the donut for every single meal!  Or selecting a food item that I do not have).  This gives her independence which is so important for a toddler.  She gets to choose her food.  Also, this helps prevent most, but not all, communication break downs.


When she sign's "bread", this is what it looks like:

For "cracker":

It also helps with TV shows. When she wants to watch "Potty Time" she hands me both "Signing Time" and "Potty Time".  I just laugh because, well yes, Potty Time is also by Rachel Coleman.

I have tried to upload the empty grid that I place my pictures into, but the pesky thing just will not show up in the blog post.  If you would like a copy of the grid, you may email me at thechroniclesofelliebelliebear (at) yahoo (dot) com


*Note: This does not replace Ellie's verbal communication, but is rather an adjunct to it.  She will hand you a picture while trying to say the word.   Bear is on Phase III of the system.
**The true PEC cards have the word written above the picture.  These words have helped Ellie learned to sight-read 15+ words.
*** The true PEC system is expensive.  Speak with your child's therapist about using PECs as she may provide you with the ones relevant to your child.  Or, you can create your own like me


Resources:

http://www.pecsusa.com

http://en.wikipedia.org/wiki/Picture_Exchange_Communication_System

http://www.childrenwithspecialneeds.com/index.php/downloads.html