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

Traitor

Oh my goodness!  Could it be?  Is this really happening?

Is my hyperactive little Bearity Bear actually sitting and snuggling?  With me?!?!

I better not move.  In fact, I will not even twitch just so I can sit here all night inhaling her sweet little Ellie Bear scent and enjoying these snuggles.  Eh, doesn't exactly smell so sweet.  Actually, that blankie smells a little nasty.  Ew!  Still, let me just enjoy this precious moment.  Wait! Quick!  Andrew, get the camera and document this!

A rare, very rare, mother-daughter-kitty bonding moment.
Yes, I am indeed in my jammies.

Haha! Here is proof that there is indeed a real living person behind this blog.

Ack!  Escapee!  I knew a 5-second snuggle was totally pushing it.

Traitors!!!!  The whole lot of them!

Waiter refuses to serve a family who insults a child with Down syndrome

I am sure that we have all been stared at one time or another in our lives.  My daughter gets stared at frequently.  Often, it because she is gorgeous and frantically waving while shouting "Die-Die" [bye-bye].  People stare and often interact with her--high-5s, waving, talking to her like a real human being. Like a child of worth.

Yet, there are those other stares.  The glares and the not-so-nice stares.  More often than not, I choose to believe it is because she is being ornery in true Ellie fashion in a restaurant or grocery store.  However, I am not so ignorant to believe that perhaps are few of those stares are because she has Down syndrome.  Disabilities come in many forms and my daughter happens to have a syndrome that is visible to the naked eye.  Yes, she looks different.  She has stunning blue eyes with an upward slant.  She has a tiny, doll-like nose and a small mid-face.  Her tongue occasionally sticks out and she is floppy, as in low-muscle tone floppy.  She also talks predominantly with her hands or screeches.  Fortunately, these stares are rare and no one has actually approached us and been rude about us bringing our "special needs child out in public".  *GASP*

Now, imagine bringing your family to a restaurant and having the family next to you demand to be seated elsewhere because "special needs kids should be kept in special places".  How many people would stand up for that child?  For that family?  Would you hunker down in your booth and pretend you didn't hear?  Would you turn the other way?  Or would you offer a smile to the family and child with special needs?  Or would you say something to that ignorant family-the one who cannot see the worth of every child?

I read a news story today that commended a waiter at Laurenzo's in Houston, Texas.  The above scenario happened to Kim Castillo's family.  Her little 5 year-old boy, Milo, has Down syndrome.  The neighboring patrons in the restaurant requested to be moved to another table because they did not want to dine next to a child with "special needs".  Milo was not misbehaving or being disruptive.  They truly wanted to move because of his disability.  Huh, I suppose Down syndrome is contagious or something. Look out everyone, child with special needs!  Take cover!  Seriously, I cannot believe people this day and age are still thinking that we should lock our children up in institutions, but again, society never ceases to amaze me.  Anyway, that is not the point of this story, the point is, the waiter would not let it rest.  He stood up for Milo and the Castillo family.  He did not turn the other cheek.  The waiter flat out told the judgmental family of four that he was offended by their behavior and that he would not serve them.  I hope that this waiter's decision to with-hold service was supported by the eating establishment.  (I am also rather worried about the children who are members of this ignorant family.  Those parents are educating their children and setting the example that those with special needs should not be out in society.)
  
As said in the news article "The mom praised the waiter and other members of the restaurant staff, “who not only love [my son] for who he is — a customer and little boy with Down syndrome, but stand up for him no matter what.”

Waiter Praised for Refusing to Serve Family Who Insults Child With Down Syndrome

What is Your Name?

What's your name?

A simple question that should have a simple answer.

Ellie knows that she is "Ellie" the same as she knows that I am "mama", Andrew is "dada daddy", and Leslie is "Eee".  She responds to Ellie.  She can even read her name on a card or piece of paper--she says "Eee".

Yet, if you were to ask her "What is your name?"  She just stares.

The same for other simple questions.  "What color is/are your shirt/socks/pants/shoes?"

She stares.

The thing is, she knows her colors.  She can sign or say all of them.  Even silver, gold, and gray.  If you  give her choices and say is your shirt red or black?  She can sign the correct color.

The broad question of what is your name or what color is your shirt requires a different thought process.  Her little mind must translate the questions and sift through all of the possibilities.

As more and more people would come up to Ellie and say "What is your name, little girl?" and actually expecting her to respond,  I got to thinking that surely there must be some way to help Ellie understand this common, personal question.

Miss Leslie, of course, had an idea.  She showed up at my house for one of Bear's therapy sessions with a laminated picture of Ellie with the PECs above.  See below.

Surprisingly, Bear sat in her chair for a while (well, a long while for her!) and gazed lovingly at the picture of her self.   Yes, it was a picture of Ellie as a fairy princess.  Yes, my daughter is vain.  Come on, if you were as gorgeous as Ellie Bear, you would stare at yourself too!

What is your name?, Leslie would sign and ask.  Leslie would then tap Ellie and say "Ellie" while signing the letter "E" near her chin.

Bear would blink.

She would then try to sign "girl" because that is similar to "E".  That's right Bear, you are a girl.

Repeat. Repeat. Repeat.

Repeat.  Repeat. Repeat.

Then repeat some more at the next therapy session.  [and in between sessions with mama trying to maintain her all-too-short attention span.  Apparently, mommy is boring compare to Miss L]


Then it happened.  I was getting Ellie ready for bed and I asked her "What is your name?" and I didn't have my laminated sheet.

"EEEEEEEEEeeeeee" with her little hand in a fist circling around her chin.


That's right, Bear.  Your name is Ellie.

PROUD MAMA!  SUPER ELLIE BEAR!

Table Manners and Dinner Etiquette

Ellie Bellie Bear here.  I am writing to teach you all about how to properly eat at a table full of lovely people and elicit grins and happy smiles all around.

How can you not smile at this lovely yogurt face?
Yes, that is my hair band around her neck.  

My mommy says that we I have come a long long way on the self-feeding.  I don't know what she is talking about.  I was totally giving myself a facial in the following pictures  I was promised that yogurt and oatmeal are both great for exfoliation and moisturizing.  I look lovely!

I Feel Pretty. Oh So Pretty!  Look Ma!  No eczema!

Soon after the above self-feeding experiment, Mommy came home with different spoons.  Short stubby little spoons with deep buckets and chunky handles.  I was a little leery at first until I realized I could fit way more into my mouth without the precious food falling onto the floor.  However, they are not as good for catapulting food across the room.  To get that glorious splatter effect, you have to throw the actual eating utensil.  In this household, when that happens, Mommy says "time out" and moves my chair into the middle of the room.  Screaming is an excellent way to let people know you are displeased.  Although Mommy cringes.  I see it in her face as she tries to secretly ignore me.  So I scream louder.  I am very good at screaming.

Mealtime is all about relaxation and enjoying the culinary experience.  Kicking your feet up so-to-speak.  This is me being very ladylike.  Admire my beautiful feet.

Yoga anyone?

Sometimes it gets a little dull at the dinner table while waiting for the food to arrive so it is important to self-entertain.  Like so. . . ooh, there is my Buh-bo-bah!  Think of this as practicing your self-help skills.

Belly Belly Button You're Oh So Fine!  Ooh, Belly Button I'm So Happy Your Mine
-Sandra Boyton, Happy Hippos

Finally, it is polite to let the cook know that you really enjoyed the food.  I recommend scraping the bowl clean and then flipping it over to make sure you did not miss any morsels of yumminess.

If the food is especially tasty, it is common courtesy to share your food because sharing is nice.

Share. Thank. Please.

Oh and do not drink to much.

This photo was taken at Andrew's company picnic this past summer.   I cannot help but laugh.  She looks like a drunk toddler, but I promise she only had water!

The Bear is ready for fine dining.  Take me to Fogo de Chao please!

It is how her brain is wired

I wrote this post a few months ago and then stumbled across it in my drafts folder.  The photos, however, are recent.  



"We think that this goes beyond Ellie having Down syndrome".  Those are the words one of the ECI therapists uttered with regards to Ellie's poor speech development back in June or July or sometime before she turned 3 years-old.

No, I think.  No, it is because you guys didn't want to provide her with speech therapy services.  It is because you didn't send a speech therapist out here until recently and then only monthly at that.  It is because she didn't have the right therapy.  Because she never had a chance.  I argued and argued and argued for her to have speech and now you are leaving her!

And yet, I knew that they were right.  Ellie wasn't talking.  She was barely making noises.  She didn't babble.  Didn't jabber.  Only a handful of words emerged from my daughter's beautiful mouth.

I wanted her to be deaf.

Because it would explain why she couldn't speak.  Because then we could try hearing aids.

I wanted her to have poor vision.

Because then she could have glasses and it would explain her poor signing.

Give her peanut butter.  It will stick to the roof of her mouth and her tongue will go up so that she can form works with /n/ and /t/.

She couldn't feel that sticky peanut butter on her high arched palate.

Place ice cream on the upper lip.  The coldness will cause her to lick it off.

She couldn't feel it.

No matter what we tried, her little tongue wouldn't point up.  It would just go all Gene Simmons-way out and down.

I watched her.  I saw her try to mimic my mouth.  She would look so intent on imitating and yet, she couldn't physical follow what I was doing.

"Well, it must be how her brain is wired.  This is beyond Down syndrome.  She must have poor oral motor planning."  The brain signals are not reaching her oral motor muscles properly.  They are jumbled.  She should be making /m/, /p/, /b/, /w/, /d/ early phoneme sounds, but she is not.  She should be this.  She should be that.  She is instead focusing on guttural /g/ and /k/ sounds. She does not show signs of true apraxia.  Should be. Should be. Should be.  I am so sick and tired of the should be's.

signing "car"

Her signing is the same way. Why is it car, puzzle, climb, celebrate, and ambulance all look the same?  Blanket, paint, sweep, friend, train?  Baby, love, and bear?  Shoe, more, ball, help?  Her signs are such gross motor approximations that even I cannot interpret them without a vowel or consonant sound accompanying them.  I get frustrated.  She gets frustrated.  I just want to understand.

I guess she wanted her water!

Okay, so I didn't really want her to be hearing impaired.  I didn't want her to be vision impaired.  I certainly, don't want there to be a sensory input-output neurological connection.  I just want communicating to be easier for her.  And, yes, selfishly, for me.  I want to hear her voice and understand her.  I want her to be able to communicate her needs. . . by talking.  Or at least by signing.  Poor oral motor planning.  Poor fine motor planning.  We will get through this.  Together.  On Ellie's time.




**Ellie is no longer in ECI.  She still struggles with formulating sounds, words, and signs.  She is motivated to communicate though.  There are still meltdowns when I cannot figure out what she wants, but she is trying to sign new signs and say new words.  We are currently using both Kaufman therapy and something similar to PROMPT. Of course, we continue to use our Signing Time videos and Picture Exchange Communication.  Ellie is a rockstar and continues to amaze me everyday.**

Our Texan Christmas

Nothing screams Christmas in Texas like Prime Rib.  That's right.  A nice, plump, juicy, bloody slab of meat lightly seasoned with garlic salt and pepper and then smoked to perfection.  All served with baked beans, green beans, and a chocolate indulgence cake.

Most importantly, nothing screams Best Husband Ever like a hot, sexy blond with meat brander and wooden spoon over a hot smoker and a hot stove.  Yum! Sigh.  Oops, this is supposed to be a family post.

My parents drove down to Austin from St. Louis, Missouri while my brother flew down from Madison, Wisconsin.  My brother got to experience what it was like to not wear a jacket in December.  I think he enjoyed it.  My parents go to see all the glories I-35 has to offer--absolutely nothing but concrete and traffic. Our visit was lovely and all together too short.

We tried to keep up with the tradition of baking sugar cookies.  By making sugar cookies, I mean purchasing a tube of pre-made dough by Pillsbury and then adding a bit of flour to stiffen it up.  Adding too much flour, thus making the dough crumbly and then whacking it with a rolling pin and hoping the bear and snowman shapes maintain themselves long enough to reach the cookie sheet.  So worn out by the endeavor of cutting them out and then not burning them that we completely forget about the whole decorating part.  And the eating part.  That is what chocolate cake is for.

Bear was still getting into the hang of the whole present thing.  As in, they are for her. Nearly all of them.   She surveyed the lot and then carefully removed all the bows and placed them in her special stash of things she believes she is not supposed to have.

After much coaxing, we got her to open a present.  It was a toy broom.  It was all over after that.  Who needs presents when you can clean!?  After much more coaxing, we got her to open another gift. . . the Dream Lite.  I am saving those photos for another post.  That's right, a post just about the Dream Lite.

The innocence at this age is so beautiful.  She isn't at the stage of I want x,y,z and then tearing through all of the presents only to careless discard ones she doesn't care for or to complain that so-and-so got more presents than her.  She is at the stage where she cannot believe she gets the bow.  She cannot believe she gets to tear paper.  In fact, that paper ripping is expected of her.  The toy is just a bonus.  It is beautiful and I want to bottle it up and hold onto it forever.

My family's visit was over too fast and dampened by the death of my beloved Aunt Aunt Peg in the middle of it all.  We celebrated and honored her spirit by recalling her many antics.

Christmas Day was chaotic as always.  We make the 4 hour trek to Plano in the pouring rain.  Then miracle upon miracle, there was SNOW!!!!!  Yes, snow.  In Dallas.  Don't believe me?



See!  My gorgeous niece and nephew were having a blast pelting Mama Dunja with snowballs.

Christmas Day is wild.  I love it.  With Andrew's brothers and step brothers and all their wives and children it is complete and utter chaos.  Kids every where.  Lots of talking, laughing, and the occasional heated conversation.  The food.  Mama Dunja is an amazing cook.  I ask her for a recipe and she says thing like "add some flour.  add an egg or two.  butter. lots of butter.  some milk.  I don't know how much.".  Yes, she makes everything from scratch and doesn't measure a thing.  Amazing.  Also, she could teach Martha Stewart a thing or two about decorating.

Chunky Love had a little too much egg nog and conked out during the gift exchange.  Funny what no nap will do to you.  Poor mommy had to open Bear's gifts.




Here are a few more pictures that I thought I would include in a slide show.

Christmas 2012 - slideshow with music

I made the same old mistake that I always do. . . I am not in any of these pictures since I never let anyone else touch my baby camera.

What is this?

La la la.  I love to sweep.  I am a big girl.  Sweep sweep sweep.

 *Gasp*

Oooh, what is this?

Hmmm, perhaps I should push on it.

Beep beep beep.

Oh, I know!  It is my "buh-bo-bah"!!!!

Oh Mama Mama!  Mama mama ma!  Let me see if you have a buh-bo-bah.

You have all officially been forewarned.  The Bear is obsessed with belly buttons and so if you happen to pop on by our house and get accosted by a shirt-lifting toddler you now know why. Plus, I am totally counting "buh bo bah" as a three-syllable word.  Rock on, my Ellie Bear!