Monday, October 31, 2011

Give Away Winner and Happy Halloween

This chunky chicken (yes, I know it is technically a duck costume, but I like to think her chunky chicken cape says otherwise ;)  would like to wish everyone a safe and happy Halloween!

The winner the "I Love You Through & Through" book is Andrea


andrea said...

I love all of Max Lucado's children's books... I think my favourite is "Just the Way You Are".


Andrea, please email me your mailing address at thechroniclesofelliebelliebear@yahoo.com


Super Ellie.  Chunky Chicken to the rescue!

Anyone else notice that she is signing "hat" in the right-hand pic?
"Ack! What is this thing!  Get it off of me!"





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Sunday, October 30, 2011

Sharing Sundays: MORE PRIZES-iPad, Kindle, Jewelry, Scentsy



Shannon's forever family is essentially at a stand-still on the adoption process until $5,500 is generated.  This will enable to the Sphaks to submit their dossier and then get a travel date to rescue Shannon.   They cannot do it alone and a few more prizes have been added to sweeten the pot.

Remember this little girl is living in an INSTITUTION.  She is not living in a baby orphanage.  She has indeed been transferred.  Not to mention there is only $1610 in her grant fund.

Why yes, that is an iPad2
Check it out!  Kindle!!!!
Mmmm Yummmm  A Scentsy Gift Set

Who doesn't love jewelry? Remember Christmas is just around the corner.



Again, who doesn't love jewelry?  Holiday season dear friends :)

Check out the Sphak family's blog at Faith Set Free to enter the give away.  Winners will be drawn on November 30th.  


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Just a reminder that tomorrow (Monday 10/31) I will be drawing the winner of the I Love You Through & Through children's book.  To be entered into the drawing, visit here and leave a comment.

Saturday, October 29, 2011

R-word Rant

As parents it is our job to spread the word to end the word.  Just as you would not (okay, a few slip ups here and there) cuss in front of your children, the word r*tarded should not be used either.  After all, children learn to use these words through television, music, and parents.  Yes, parents.

I am ashamed of myself.  I have no qualms about writing heated letters to television and movie producers or to politicians (take that H. Braun!) and speaking out to strangers when the r-bomb is used.  However, when it comes to acquaintances, I am so dumbfounded and shocked that the word r*tard actually escapes their lips in my presence that I typically say nothing.  I hang my head, I say nothing, and I am horrified.  I need to change that.

If I could just write a lovely letter, print it out, and give it to them then maybe I could make a change and get my point across without the anger and without the tears.  I know some of you may say that I need to grow thicker skin, but I believe this is a battle that should be fought and can be won.

Would you say "that is so g*y" or "you n*gger"? to someone or when telling a story?  No, I hope not!  It is discriminatory language and politically incorrect.  It is frowned upon and you open yourself up for a major butt kicking.  The same goes for the r-word.  R*tarded.  In some ways, it is even worse as this word is discriminatory towards a group of people who cannot always defend themselves.  "That is so r*tarded" or "They are so r*tarded".  I know when my acquaintances say the r-word it is not directed at Ellie and yet, it is very offensive.  I am mortified.  Please remove that word from your vocabulary.  Treat it the same as you would a cuss word or the word n*gger.

My daughter may be slow at walking, talking, and understanding abstract concepts.  That is the true meaning of the word r*tarded.  Slowed.  As a flame is slowed upon spreading across an article of clothing.  Flame retardant.  And yet, the word is often used to mean stupid, idiotic, dumb.  My daughter may be slow at learning things, but she is not stupid.  Choose another word.  Please.  Grab a thesaurus if you need to. As she grows up, she WILL KNOW what r*tarded means.  She is not stupid.  She will know, just as her peers know.  Choose another word.  Remove r*tarded from your vocabulary.  Do not let your children add this word to their repertoire.  Remember, words can and do hurt. Spread the word to end the word.

In the meantime, I am going to grow my thicker skin and brace myself for the conversations I need to have.  I am not going to let mortification and fear of my acquaintances' reactions keep me silent any longer.




A big thank you to Andi from Bringing the Sunshine  who mentioned in the comments section that there is a printable business card on the Spread the Word website http://media.specialolympics.org/soi/files/spread-the-word/2012/Spread_the_Word_Card2012.pdf


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To learn more about Stop Disability Slurs, visit https://www.facebook.com/stopdisabilityslurs
To learn how to become a SDS advocate, please email us at stopdisabilityslurs@gmail.com

Thursday, October 27, 2011

Forget Me Not Friday

Forget Me Not Friday is a blog hop that focuses on children who live in orphanages or mental institutions in Eastern Europe.  They live in these prisons because they are considered "unworthy".  They may be unworthy because they have Down syndrome, Fetal Alcohol Syndrome, Apert syndrome, cerebral palsy or any other medical condition that makes them "less than perfect" in the eyes of society.

All of these loves are in desperate need of a home and also need grant money to go towards their adoption. To learn more, please click on the child's name.  To learn more about how you can help or about adopting, visit Reece's Rainbow at www.reecesrainbow.org

Tabitha
I will continue to advocate for my "daughter of the heart" until she is home with her forever family.



Alexander
Isn't he precious?

Jesse
Isn't his smile contagious!?

Amie
This little girl has Ds, a heart defect, and a protein intake deficiency.  She needs a family!

Catherine
This beautiful little girl may already be in an institution as she was born in 2004.


Ahmed
Just look at this handsome young man.  Btw, single moms are welcomed!



Mickey

Jolene
This little girl has no money in her grant fund.  Perhaps you can help?



Sammy
This sweet little boy has Apert syndrome.
Lacey
Miss Lacey has a love for music and would thrive in a home.  She has cerebral palsy, but doesn't let that stop her.


If you have a child you would like featured on Forget-Me-Not Fridays or you have a fundraiser for Sharing Sundays, please contact me at thechroniclesofelliebelliebear@yahoo.com

-anna

Confession Time


My daughter does not point.  She does not form words with her mouth.  Ellie has trouble forming signs (see, that she does not point).

Here is my confession:  I fear that my daughter will never talk.



Ellie has only a few words.  Okay, 3 to be exact  or four if you count the one and only time she said "more".  "Mama" for Andrew and paired with the sign "Dad" and "dog" which sounds like "a-vah".  She also says "oo" for shoe on occasion.

She also has a handful of signs.  These are signs in which both hands make the same movement such as the signs for more, eat, water, music, cracker.  Any signs where the one had must do something different than that other is nonexistent.  Any sign where the fingers must be separate, i.e. pointing, #3, or letter Y is nearly impossible for Ellie to do. . . YET.  It is as though her brain-to-hand communication is interrupted.  She tries to sign.  She really tries, but it all comes out as a macarena-like hand movements of fists and flat palms.  I do not understand her.

I fear that it will always be that way.  That I will not understand her.



Andrew and I make different sounds"puh", "mmmm", "ba", etc until we are blue in the face.  As do her therapists.  Ellie rarely even tries to imitate.  It just isn't important to her.

I am at a loss.

I worry.

I fret.

I start thinking and I do not like where my thoughts take me.



This fear actually started just after Ellie was born.  You see, I have this really cool aunt who happens to have Down syndrome.  Aunt Peggy is an awesome woman with a fantastic sense of humor.  The thing is, unless you are around her frequently, she is very hard to understand.   Yes, she does talk and believe me she can talk up a storm, but her pronunciation and annunciations are rather poor.  I remind myself over and over again that she was born in the 1950s.  You know, pre-Early-Childhood-Intervention era.  Yet I worry about Ellie.  Will Ellie be able to communicate well enough to get through school?  To hold down a job?  To verbalize her needs and wants?



Communication comes in many forms.  There is verbal communication and nonverbal such as signs and pictures.  There is also the Ellie version called SCREAM.  There are various dialects of SCREAM such as Robert Plant, Axel Rose, Eddie Veder, and Steve Tyler SCREAM.



There are many pieces that must come together for speech and signing to happen.  Cognitive understanding, fine motor skills, facial muscle tone, and motivation.  Those are just to name a few and many of those areas have delays in people with Down syndrome.  Ellie is motivated to sign, but I am seriously questioning if she is motivated to vocalize outside of SCREAM at this point in time.  It isn't like we reward her with SCREAM.  In fact, Andrew and I are skilled at tuning out SCREAM.  We have been using flash cards, Signing Time! DVDs, reading lots of books, ABA therapy, and speech therapy to help with the cognitive component.  We have various toys and activities to isolate her index finger and to also develop other fine motor skills needed for signing.  Ellie drinks apple sauce and pureed veggies through a straw to strengthen those oral motor muscles.  Yet I feel like we are at a plateau.  Will she ever point?  Will she ever hand me a picture to communicate her needs rather than just mouthing the picture?  Will she ever get beyond signing "more"?



I know in my heart her communication can only get better.  I know this and yet, I still confess that I have this fear that Ellie will never talk or sign appropriately.

In the meantime, I would love to get some tips from all of you.  What do you find helpful in promoting communication?



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Wednesday, October 26, 2011

31 for 21: Guest Blogger on Therapeutic Listening

Penny of Penny's Peeps is hanging out at The Chronicles of EBB for a very special guest blogging post on Therapeutic Listening.  This post is full of sensory integration information and you can find much more over at her blog.  Also, Penny's son Wyatt is "promised" to Ellie.  Who says arranged marriages are a thing of the past?!


Therapeutic Listening

A major component of wyatt's sensory therapy has been "THERAPEUTIC LISTENING."  "Therapeutic Listening" is defined as "an auditory intervention that uses the organized sound patterns inherent in music to impact all levels of the nervous system.  Trained therapists learn to use modulated CDs to set up programs for clients in homes, schools and clinics."  (Vital Links)  


many experts believe that the auditory system is a critical link in sensory integration (which is the ability to organize sensory input from the body and the envirnment and to incorporate it adaptively in meaningful occupations).  the vestibular and cochlear systems function similarly with "hair-like receptors moving in a fluid filled canal" as one system.  "therapeutic listening" provides direct input to this system through various musical styles, types of filtering, and level of complexity!  the music is actually "electronically altered to elicit the orienting response which sets up the body for sustained attention and active listening."  (Vital Links)






so how does this all work?  wyatt wears specially designed and "weighted" headphones to listen to cd's for varying lengths of time.  the process involves building up the time spent listening. he had worked up to 30 minutes on the first cd before switching to the second cd in the series this week.  his therapist sits with him, usually on one of their therapeutic swings, gently swinging back and forth.  this gives additional vestibular input as he listens.   this week he also crawled around and played while listening. 



and what outcomes might be anticipated from this therapy?  "Therapeutic Listening coupled with SI (sensory integration) tends to speed the emergence of:

  • attention
  • organized behavior
  • self regulation
  •  postural control
  • bilateral coordination
  •  praxis
  • fine motor control
  • oral motor/articulation
  • social skills
  • communication
  • visual motor integration"   (Vital Links)
what have we seen with wyatt?  we have seen a HUGE improvement in his ability to focus on tasks in therapy!   we have also seen improvement in his social skills (not hitting his friends as much).  his postural control is better, he is showing improvement in both gross motor and fine motor skills, and he is jabbering away with varying inflections ALL.THE.TIME now!  these are just a few of the changes we have seen! 



"Therapeutic Listening" was created and developed by occupational therapist sheila m. frick, who also founded vitals links.  her organization provides the materials used as well as training in the system to clinicians.  another component of therapeutic listening is the "astronaut training program: a sound activated vestibular-visual protocol."  although wyatt's therapists have invested in this program, they decided that he is too young for the movements that the program involves.  but if you have an older child, you might look into this program as well! 
Penny
www.pennyspeeps.blogspot.com

Tuesday, October 25, 2011

31 for 21: Guest Blogger on People First Language

In the blogging world (and Facebook world) you meet a lot of wonderful people and today, I am pleased to announce that my cyber friend Christie is guest blogging here on The Chronicles of EBB.

Christie from Welcome to Taylorville writes about People First Language.  Do not know what that is?  Then read on!




One of my biggest pet peeves since giving birth to my son is the inability some people have in referring to him a kid with Down syndrome. So what do these people call him?
1. Downs
2. Downs kid
3. Downs person
4. Downs baby
5. Down syndrome
Do you see the pattern here? 
So what is wrong with saying, "Oh, is he Downs?" Or saying, "He is such a cute Downs kid." Or how about, "I know a Downs person and they are so loving." I could go on and on, but, you get the picture. The problem with these sentences is the fact that, not once, was my child, Joseph, ever mentioned. He was never personified in these sentences. This is NOT people first language. 
For instance, if you had cancer, I would never call you "that sick cancer person" or "Cancer Cathy" or ask "Oh, are you cancer? That is just awful"... If I were to refer to your illness (or whatever) I would say, "Cathy has breast cancer" or something to that effect. 
So when you are out and about doing whatever it is you do each day and you are talking about a kid with Down syndrome, a baby with Down syndrome or a child with Down syndrome and you feel the need to bring Down syndrome into the equation be sure to put it in it's proper place and that would be as the secondary numerator's holding place and NOT after the equal sign. Yes, my son is a person first and the equation should look like this

Joseph + Down syndrome = Joseph 
and not like this
Down syndrome + Joseph = Down syndrome. 
Down syndrome is secondary in all things in my home, Joseph is Joseph first and always. We just got the added bonus of Down syndrome :0) 

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Monday, October 24, 2011

31 for 21: Uniting Together To Celebrate Holland


The Buddy Walk is not just about increasing awareness about Down syndrome.  It is also about celebrating Down syndrome and uniting together to show support, love, and acceptance.  The unification of family, friends, coworkers, and neighbors.

This year, Ellie Bear's Entourage had 11 team walkers and raised $550.  (Thanks to those who participating and donated!)  Our team was made up of adults and children, friends and neighbors.  It was a blast. . . except for the moment when the bouncy house collapsed, but that is another story.



Many of you have likely read the poem Welcome To Holland by Emily Perl Kingsley.  There is a follow-up to the poem called Celebrating Holland and I would like to share it with you along with some photos from Sunday's Buddy Walk.

Ack!  The walk hadn't even started yet and Bear pulled out her ribbons. 


Celebrating Holland
by Cathy Anthony


I have been in Holland for over a decade now. It has become home. 
I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.


There is nothing like the love between father and daughter.

I reflect back on those years of past when I had first landed in Holland.
I remember clearly my shock, my fear, my anger - the pain and uncertainty.
In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. 
I have learned so much more. But, this too has been a journey of time.



I worked hard. I bought new guidebooks. 
I learned a new language and I slowly found my way around this new land. 
I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.






Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land.


Bounce Bounce Bouncy House



I have discovered a community of caring. Holland wasn't so bad. 
I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned.





Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest.



Ellie Mobile

And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. 
I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.


Sometimes you just have to "taste" your tutu.


I have come to love Holland and call it Home.



I have become a world traveler and discovered that it doesn't matter where you land. 
What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.





Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!


Why yes, those are indeed skulls on her socks.  That's my Bear, rocking in her tutu and skulls.


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Saturday, October 22, 2011

Sharing Sunday: Many Give Aways for a Good Cause

Ellie says to check out Sharing Sundays


My cyber buddy Jane over at Flight Platform Living is hosting our weekly Sharing Sundays.  Sharing Sunday is a blog hop to help families who are actively fundraising towards the adoption of children with special needs over seas.  If you want to know why I write about the orphans in Eastern Europe or know more about the state of mental institutions, please click here.

Would you want your little son or daughter living here?


On Friday, I mentioned the Sphak Family who is hosing an iPad 2 and jewelry give away to bring home Shannon.  Shannon is already in a mental institution and her family is very close to getting a travel date.


Gracie (Annie Gray)
Little Gracie is patiently waiting for her forever family, the Wests, to rescue her.  The Wests are very close to traveling and still need funds.  Learn more about their journey here.




The Jobes Family has recently committed to adopting Josiah.  He too is already in an institution and the family is moving quickly in their adoption journey.  Learn more here.



Olga
The Abell Family has been trying so hard to bring Olga home.  You have probably seen her picture before way back on "A Perfect Lily"blog.  They are selling t-shirts and other items in hopes of raising money.




Artem

Since I mentioned "A Perfect Lily", if you have not recently visited Patti's blog, go check out the awesome huge Target & Amazon gift cards give away she is hosting for a little boy Artem.  Artem does not have a forever family and for months Patti has been searching.  Perhaps you are his family?  Or perhaps you would like to increase this young boy's grant?


Do not forget I will be giving a way "I Love You Through and Through" to one commented this blog post.  The give away closed on 10/31/11.

Also, if you haven't seen this blog A Sibling for Silly Lily, head on over now as your will cry tears of happiness when you see this family who has been united with their daughter Julia.

Finally, are you fundraising or know of a family who needs help raising funds?  If you would like to listed in next week's Sharing Sunday, please contact me at thechroniclesofelliebelliebear@yahoo.com

Adios!  


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