An Ellie Doll for Ellie: Extra Special Dolls

A few months ago, I wrote about a very small, Kickstarter business called Dolls for Downs.  A few years ago, after perusing a catalog of American Girl dolls, Hannah woefully stated that none of the dolls looked like her. This was the start of one woman's dream.  A dream to create a doll for her daughter Hannah who has Down syndrome.  A doll that resembles her.  This dream became bigger and expanded to create dolls for boys and girls of various hair colors, eye colors, and ethnicity while displaying some of the physiological characteristics common among people with Down syndrome such as the almond-shaped eyes, a sandal gap toe, simian hand crease, and even a heart surgery scar upon request.  Her left hand signs "I love you" in American Sign Language.

This is the Ellie doll.  You can order one with or without a heart scar.

Years of work were poured into this enterprise.  To make this dream a reality.  Not just for her daughter Hannah, but for others like my little Ellie.  Orders came in quickly, but as with any new business, there were bumps on the road.  There were delays in production.  Problem with the painting.  Yet Connie persevered and my little girl now has her very own Ellie doll (yes, this particular doll is named Ellie) and she is beautiful.

I am receiving nothing for writing this post.  I am inspired by Connie at Dolls for Downs and I want to spread the word about these "Extra Special Dolls".  Yes, there is a learning curve as Connie navigates starting a new business, but she is putting nothing but love and hard work into this.  To help make other children happy.

These dolls are for both boys and girls.  They are not just playmates, but also therapy dolls.  Dolls to help our children develop fine motor skills.  There are full length zippers, buttons, snaps, and a buckle.  the tie "converse" shoes are adorable.

OT fine motor development: zipper, buckle, laces, snaps.  Buttons on her jacket.

Ellie upon seeing her doll exclaimed "Ba-bee" [Barbie] and immediately began brushing her hair.  At 4 years-old, Ellie doesn't see herself as different, but she immediately saw this doll as her "playmate", her little buddy".

These dolls are 18 inches and the American Girl Doll dresses also fit these dolls.  The shoes however, will not fit your Extra Special Dolls.  Glasses and AFOs as well as Cardio Surgical scars are also available.

To learn more please visit:

The Dolls for Downs Facebook Page

The Extra Special Dolls Website

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.

www.kidcompanions.com

https://www.facebook.com/kidcompanions

*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.*

"But none of these dolls look like me": Dolls for Downs

Growing up, I remember receiving the American Girl doll Kirsten for Christmas.  At the time, there were only 3, yes three, American Girl dolls to choose from.  There was no red-headed, curly-haired doll like me.  With freckles.  In fact, you couldn't really find dolls with red hair in general.  Now, you can customize the dolls.  Meaning, you can pick out their skin tone, hair color, hair length, freckles, eye color, etc.  You can create a doll to look like your child . . . provided she/he is deficient in that extra chromosome.

This is why I am so excited about  Dolls for Downs!

©Dolls for Downs: Hannah proto-type

This is Hannah.  She is stunning, isn't she?  Beautiful almond-shaped eyes.  A perfectly round head, with chubby cheeks, and small, flattened mid-face. A small nose.  The whisper of a smile.  A face that looking back at me, resembles my darling Ellie.  My beautiful, blond-hair, blue-eyed munchkin who happens to have Down syndrome.

Can you just picture the blonde doll?  Like my Ellie? Maybe more like Ellie when she had bangs? I cannot wait until the blond, blue-eyed doll is revealed.

My daughter and so many others rocking their designer genes can now have a doll (boy or girl) that looks like them--complete with sandal-gap toe, the single palmar crease on the hand, and a post-heart surgery scar (if requested).  Wheel chairs, trachs, feeding tubes, and leg braces are also available to truly make this doll "just like" your child.  Can you tell that I am excited?!

©Dolls for Downs: sandal gap toes!

Hannah is not just a doll.  This durable, beauty is meant to be played with and the doll's creator, Connie, designed her so that she would also function as a therapy toy.  Can you guess that a mother designed this toy?  A mother who loves her daughter so much that she not only designed a doll to look just like her daughter, but to also cleverly sneak in a bit of Occupational Therapy.  Now, that is a true mama bear!

The clothing that comes with the dolls are meant to create a sensory experience with their varied textures and they allow for manipulation of buttons, zippers, buckles, and velcro.  Fine motor skills will be further developed as your child dresses his/her dolls and works his/her fingers over those ties and buttons.  These dolls are made to be played with and even get wet.

©Dolls for Downs: Logo

Hannah and her friends have been a labor of love.  The idea was inspired by the Connie's daughter Hannah, when flipping through a doll catalog she [Hannah] said "“‘Mom, none of these dolls look like me. Not one of them.’

Well, Miss Hannah, now there are a series of dolls that look like you!

Visit: Dolls for Downs to learn more about the doll and about pre-ordering.  The projected release date is May 2013.  I do not know if I can wait that long!  After all, I anticipate ordering the blonde-haired, blue-eyed doll that coincidentally happens to be named "Ellie".




www.dollsfordowns.org
www.facebook.com/DollsforDowns/
@DollsforDowns




*I have received nothing for writing this post.  This is just my honest, excited opinion on the awesomeness of this doll.**

** All doll photos are courtesy of ©DollsforDowns

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

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

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!

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.**

The Chewy

Sometimes one chewy just isn't enough.

Sometimes a girl has to accessorize.

Sometimes it is important to share your chewies by shoving one (or two!) of them into the mouth of your doctor and then stealing her stethoscope to listen to your own heart beat.

In case you want to be cool like Ellie and have a chewy of your own, visit here.

In case you want to know more about chewelry, visit here.