The Many Faces of Joshua in 2010

MERRY CHRISTMAS!

Joy Love Story Holiday

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Walking...

Joshua is so very, very proud of himself. He really wants to walk SO badly, it's the darn balance disorder he battles with, but he keeps trying every day. He works so hard.  I really believe this WILL be the lucky walker for him. Another mom, who has a daughter with Angelman Syndrome, gave us this walker. Her daughter, Erinn, learned to walk using it.  I've never seen him take to a piece of equipment like this before. He does somewhat like his gait trainer, BUT the problem with it is that he still leans forward so much of the time in in, and he can sit and coast in it! He also can't just sit down while in it, say on the floor if he goes over to others who are playing, and they sit down, he is still strapped into the gait trainer. With this walker, a Kaye Reverse Walker, he can walk over to something/someone and then decide to sit down, and then get up and go again. 

Joshua also, will NEVER usually hold onto anything! So to see him take to this, and HOLD the handles like he does, is truly amazing. The only things he will normally hold onto, are things that he is bringing to his mouth to chew on, or toys to bang something with! It has to be useful to him. So I'm just beyond amazed! ;-)

He usually PREFERS to only use *me* as his mobility partner.  I will keep updating, I am beyond excited!!!

Love one another!~Yvonne

A Social Network Christmas

The story of Joseph, Mary and the conception of Jesus, the visit to cousin Elizabeth and her husband Zechariah, and birth of the John the Baptist...as told through status updates and wall posts on Facebook. I thought this was very creative and well done!

Thank you Western Beef!

Foundation for Angelman Syndrome Therapeutics (FAST) Makes Great Strides in Driving Awareness and Raising Research Funding

Click the above article to read about the astounding support that Western Beef is giving to FAST. Please support Western Beef if they are in your area. If you are a parent, grandparent, sibling, aunt, uncle, cousin, or just a fan of a child with Angelman Syndrome, this is such a wonderful blessing to us all!!

As you can see from the article the partnership with Western Beef, via the Castellana family, is an unprecedented effort to assist the Foundation for Angelman Syndrome Therapeutics in raising the desperately needed funds to further vital research.

Imagine a day when our children will never again suffer from seizures. Imagine a day when each can walk, not needing their wheelchair/walker. THEN Imagine a day when another child born with Angelman Syndrome will never experience seizures, when NO Angelman child will ever again be forced into a drug induced coma just to stop the seizures that ravage his/her body, or have to experience the physical struggles and sleepless nights.

Because of people/companies, like Western Beef, this CAN happen! It just amazes me that someone that has no connection to Angelman Syndrome, does something like this. We are such a little known syndrome, but people like this really give me so much hope; hope for a CURE!

Love one another!~Yvonne

Just some fun...

FAST Gala

Hubby and I, with Colin Farrell, at the 2010 FAST Gala (Foundation for Angelman Syndrome Therapeutics)

Angels on Earth

My dear friend, and "Angel" mama, Kelly Ellison, has started a new business. Angels on Earth is her new online store. You will find the coolest Angel t-shirts I've ever seen, in men's, women's and children's sizes.

Kelly also has Angels on Earth coffee mugs, Angel earrings and necklaces. You can also purchase Angels and Idols, a fabulous book written by "Angel" dad and songwriter, Regie Hamm. 

Liquid melatonin is also available, for those who have sleepless nights with their AS kids! Kelly is dedicated to raising awareness for Angelman Syndrome!! New products will be added all the time that are useful for our kids and "parent reccomended"! 

Kelly's little "angel" Kiano

The Angelman Syndrome awareness video that Kelly made:

Story of the Winfreys and their special needs child, Ian, who has Angelman Syndrome

Winfrey's Story from Jonathan Whitney on Vimeo.


BEAUTIFUL testimony!!!!

Danny Gokey & more at Bella Bash

Danny Gokey & more at Bella Bash- for Regie Hamm\'s cause from Nashville Country Club on Vimeo.


 Click this link to find out more about the Bella Bash!

The following is taken from the website:

Founder: REGIE Hamm

In 2003, Yolanda and I flew to China and adopted our first child. Her name is Isabella Xin Meng Hamm and she is our heartbeat. We didn’t know it when we adopted her, but Isabella has a rare genetic disorder known as Angelman Syndrome. That means she is missing a tiny piece of her 15th maternal chromosome. Isabella can’t speak, bathe herself or respond to most verbal commands. She needs 24-hour monitoring to be able to function.

In the last three years, since we received Bella’s diagnosis, we’ve met some amazing people doing amazing things in the world of special needs therapy. This year we’ve formed the “Angel Wings Foundation.” This foundation will be dedicated to providing therapies and support to the most profoundly challenged of those with mental disabilities. Our long-term goal is to ultimately have an “Angel Center” here in middle Tennessee, which would be a comprehensive therapy and diagnosis center for all of those who are battling the most confusing disabilities, from Autism to Angelman Syndrome. We’re partnering with The Vanderbilt Kennedy Center to make that dream a reality.

For the past three years we’ve held something called the “Bella Bash” here in Nashville, a night of music and laughter that not only raises much needed funds but also awareness of Angelman Syndrome and all the other rare disorders that are in the shadows, (often being misdiagnosed as Autism). We want the Bella Bash to be a celebration of joy and hope and a great night out for some tired families who need to know they’re not alone in their struggle. The night will feature world class music as well as great comedy. When you leave the Bella Bash we want you to feel refreshed, renewed and ready to take on the rest of the year. Proceeds from the Bash go directly to the Angel Wings Foundation and that helps people like Louie Bichell, Rachel Pillow, Elizabeth Hathaway, Isabella Xin Meng Hamm and countless others learn how to communicate and expand their horizons far beyond anything they or we’ve ever dreamed!

We invite everyone to come out, have some fun, eat some food, listen to a great jam session, laugh, connect, enjoy and ultimately contribute your time to a great cause.

- Regie

My little cute kid winning, cover model! ;-)

Joshua is in the Connections "The Special Needs Kids Directory" Fall edition!!!! There is a great story about him and Angelman Syndrome on page 16!!!!

He is on the cover, and there is a FANTASTIC picture of he and his big sissy, Caylee, on page 18 with the article! 

Thanks Connections!

Water boy...

Love this picture! It never ceases to amaze me how much JOY Joshua gets, from just a splash of water! I could watch him play in it all day, every day.

Emma Eberhart: A story of acceptance and sportsmanship

Hipperbibs: Where Drool Is COOL!

My friend Susan, created the Hipperbib (click to visit site).

The creation of the Hipper Bib was designed for my son Ian.

Ian is 5 years old and is diagnosed with Angelman Syndrome which causes Ian to drool.  After searching for special needs bibs, drool bibs, and fashionable bibs, I decided to come up with a unique bib that had all of these features. I wanted a bib that would compliment his clothing and in turn would not draw attention to the fact that he was wearing a bib therefore, maintaining his since of dignity. 

Here is a slideshow that Susan created, with all of her BEAUTIFUL Hipperbib models!

Colin Farrell To Give Celebrity Support To Charity Gala

Colin Farrell To Give Celebrity Support To Charity Gala

The Pretty Simple World of Angelman

Pre-Order the 2011 Calendar of Angels!

The 2011 Calendar of Angels!!!

"Containing over 220 beautiful, smiling faces and inspirational messages, the 2011 ASF Calendar of Angels is the perfect holiday gift to inspire, delight and spread awareness about Angelman Syndrome. Expected shipping date is mid-November. The cost of each calendar is $10 plus shipping and handling. All proceeds benefit the Angelman Syndrome Foundation.

The ASF wishes to extend our gratitude to all of our Angelman families for sharing and contributing your beautiful photos and messages that are included in the 2011 Calendar of Angels. We also extend a huge thank you to John Heinzmann, father to Andrew (AS+), for his passion and devotion for all of his time and hard work in designing the calendar and coordinating the printing and logistics of the 2011 Calendar of Angels. Thank you all for making the 2011 Calendar of Angels a tremendous success!"

~Quote from the ASF

Hear What I Am Doing

HEAR WHAT I AM DOING


Please, mom,
hear what I am doing;
see what I am saying.
The world is a crazy, confusing, scary place for me.
I can’t do the things other kids do—my body doesn’t work right.

But inside, I’m just like other kids—I need to be loved and appreciated;

I need to belong, to fit in;

I need to contribute, to be useful;

I need to be heard and understood;

I desperately want you to be proud of me.

I want to tell you my needs, my feelings, my thoughts, but they get

trapped inside me because I can't get my mouth to say the words

There gets so much piled up inside me
that sometimes it just blows up everywhere
And I know you're disappointed in me
and you get angry at me
And somehow its all my fault.
My actions speak so loudly, you can’t see what I am saying.
Yet, my actions are my saying.
My body says what my mouth can't.
I act out my feelings,
but often the acting out is such a problem that my feelings go unnoticed.
But I have no other way of telling you my feelings.

I want to cooperate, to succeed, to contribute, to feel good about
myself, but to do that I must be heard.

Please, mom, hear what I am doing;

see what I am saying.

Author: Carolyn Hunsinger
Reprinted by permissionof the author

The Gift of Words

The Gift of Words: by Ursula Cranmer, AS mom
"This was made as a film-making project together with Diversity Peer Support Network."

FUNNY Family!

Video of Joshua cracking up because his daddy put some glasses on, he doesn't wear glasses, and Joshua finds it HILARIOUS! Sissy joins in too!

M.....More!

Joshua is now consistently using his m sound for more! Sometimes it even sounds like the word more! I truly could watch him do this all day long, it's so exciting! :-)

Love one another!~Yvonne

Daddy catching our Angel...

GREAT idea for a water play table!

Water table, from I Make Stuff.

I just LOVE this idea! We could actually make it to fit Joshua's very tall height, a reason I have not bought any of the pre-school water tables! Going to get Hubby busy this week, while he is on vacation! ;-) I will definitely implement her idea of the hole at the bottom, with a water stopper, for easy draining and changing of the water.

Love one another!~Yvonne

Teaching the Alphabet

I love these fun play-dough mats that you can print out (the link is a pdf file). (Here are more ABC activities from the same site, Alphabet Resources) I love that it has a colorful picture of an object that begins with each letter, AND the upper and lower case of each letter! So many things only have one or the other of the letter case. You would want to print these on cardstock, and laminate the pages, and then your could have your child/children roll their play-dough into long snakes (a great fine motor activity) and lay them into the outlines of the letters. You could also use vis-a-vis markers or maybe something like these, Crayola 8ct Dry Erase Crayons Large Size, to work on tracing skills also. I found the link to these pages at this blog, it's a very cool Montessori style teaching blog. I love the Montessori way of teaching pre-schoolers. I love that it incorporates so many motor skills activities that the pre-school age needs to work on.

My son Joshua, who is 6, and has Angelman Syndrome, struggles with large and fine motor skills. I can find so many ideas, in the Montessori teaching style, that I can use to work on those skills with him. I need to do ALL activities with him using HOH (hand over hand), it takes a lot of repetition for his brain and hands to get on the same page. He KNOWS exactly what he wants his hands to do, but his arms and hands just don't cooperate with his brain. It is super frustrating for him, but he works SO hard, and doesn't give up! He is a such a fighter and I am always inspired by him, and he doesn't give up just because it's hard, but he keeps on trying over and over, AND he does it with the best attitude! I can, and do, learn a lot from him everyday about perseverance, and doing it with a happy heart! He is such a living example to me daily of Philippians 4:13: I can do ALL things through HIM who strengthens me.

Love one another!~Yvonne

Joshua and the Motorcycle

You haven't seen a kid who loves motorcycles until you've seen MY kid who loves motorcycles!!!



We are forever trying to find motorcycles when we are out driving around. We actually go for drives on the weekends, just to find them. This one kept us truly amused on our trip home from Galveston yesterday! It passed us once and Joshua squealed with delight. Well, we've always wanted to get his reponse on video, so...Hubby takes off weaving through traffic after this motorcycle, with Caylee and I cheering him on. It was quite the chase! We finally got past him, so that he could again pass us, and we could roll Joshua's window down and wait for the response! :-) It was GREAT, and so much fun. Some days when it's nice out there are so many out for drives, and he is such an ecstatic little boy! Of course, we enjoy his response just as much as he enjoys the motorcycles!!

It's the little things in life, ya know?

Love one another!~Yvonne

Alphabet Therapy

This is a video of a 5 year old little girl, named Rylee, with AS, in a session with Fae Lumauag, from The Vanderbilt Kennedy Center, Alphabet Therapy Program.

We are hoping to bring Fae to Dallas, sometime in the near future, to work with our local families! What a great opportunity!!

Rylee's daddy, Ryan, wrote a book called Jade and the Walking Stick it's a fabulous little book! A snippet of the book summary: Inspired by the story of a young girl with Angelman Syndrome, Jade and the Walking Stick is a fantastical tale of a special needs child coping with the challenges in her life. Written for the author's daughter, the book symbolizes the developmental milestones common to special needs children through a fantasy fiction narrative. A fable of acceptance and triumph, Jade and the Walking Stick should inspire others to face all of life's challenges with a smile.

Love one another!~Yvonne

Whip'em out! It's what your knockers are for!

LOVE this! In our area there are some pretty awesome breast feeding commercials on the radio right now too! I love them. I hope they are making a difference in changing the minds of some whose minds had been closed to the idea before. I know there were people in my own family who thought I was some hippie weirdo for breast feeding Caylee 17 years ago. LOL!

EWG's Shopper's Guide to Pesticides

Download this guide to the "Dirty Dozen" and the "Clean Fifteen"

Why Should You Care About Pesticides?

The growing consensus among scientists is that small doses of
pesticides and other chemicals can cause lasting damage to human
health, especially during fetal development and early childhood.
Scientists now know enough about the long-term consequences of
ingesting these powerful chemicals to advise that we minimize our
consumption of pesticides.

What’s the Difference?

EWG research has found that people who eat five fruits and
vegetables a day from the Dirty Dozen™ list consume an average of
10 pesticides a day. Those who eat from the 15 least contaminated
conventionally-grown fruits and vegetables ingest fewer than 2
pesticides daily. The Guide helps consumers make informed choices
to lower their dietary pesticide load.

Will Washing and Peeling Help?

The data used to create these lists is based on produce tested as
it is typically eaten (meaning washed, rinsed or peeled, depending
on the type of produce). Rinsing reduces but does not eliminate
pesticides. Peeling helps, but valuable nutrients often go down the
drain with the skin. The best approach: eat a varied diet, rinse all
produce and buy organic when possible.

How Was This Guide Developed?

EWG analysts have developed the Guide based on data from nearly
89,000 tests for pesticide residues in produce conducted between
2000 and 2008 and collected by the U.S. Department of Agriculture
and the U.S. Food and Drug Administration. You can find a detailed
description of the criteria EWG used to develop these rankings and
the complete list of fruits and vegetables tested at our dedicated
website, www.foodnews.org.

THE POWER OF INFORMATION
Headquarters 1436 U St. N.W., Suite 100 Washington, DC 20009 (202) 667-6982

Learn More at FoodNews.org

Joshua SWIMMING!

Joshua has just recently begun to swim in the pool, with only a floatie around him. I am so happy for him, and for us! ;-) The freedom is amazing, for him and for us! ;-) He twirls around and around and swims from one side to the other, chasing kids or toys. The pure joy is so evident on his face. The first couple of times he did it, I think he was truly amazed and so proud of himself. I love my Honey Man! Enjoy a picture and video from today's swim!

P.S. I think he may have swimmer's ear. :-( Will be calling the pedi in the morning to get it checked out.





Love one another!~Yvonne

This is beautiful...

I LOVE this!!!!! Way cool! I will never, ever forget the first time I did something "alone" I went to the mall, all by my lonesome, around the age of 19. It was strange at first, but then I realized that I loved it. I just had to learn to be comfortable with myself. A week later, I then went to a movie. I was really digging it. ;-)

Love one another!~Yvonne

Joshua LOVING The Wiggles!

It was such a HUGE blessing to be able to take Joshua to see his favorite group and to watch him enjoy it so much! My heart felt so full of love and thanksgiving, watching him. He sat for a full 2 and 1/2 hours, completely mesmerized!

We not only got to watch the show, but also got to meet The Wiggles and have our picture taken with them. Joshua wasn't too thrilled about the picture at the time, he wanted to visit with the guys, and instead we were having him turn away from them and look at the camera! He didn't find that to be the best use of his short time with them. I kind of agree, but I'm glad that we have it, and he did enjoy looking at it last night. :-)



I also bought Joshua the PERFECT shirt!



All in all a VERY good day!

Love one another!~Yvonne

Joshua and Johnny Joe

Choco-Cherry Oats and Chia Breakfast Cereal

Made this recipe up this morning and it was a huge hit with the kids and myself. Joshua ate all of his, and then screamed for MINE! ;-)

I have finally figured out the right ratios of oats/seeds/water, so that I can post the recipe!

In a bowl combine:
1 cup of oats
5 tbsp of chia seeds
2 2/3 cup of water

Stir it once, and then again after about ten minutes. You are then going to let this sit overnight, in the fridge if you like, I just leave mine on the kitchen counter, covered, so that it's not so chilled when we eat it.

Topping:
20 cherries, pitted
2 tbsp of raw coconut butter (I use the Artisano brand and get it at Central Market)
2 tbsp of Nutiva chocolate hemp protein powder
handful of pecans (you can use any nut you like)
agave to taste preference

Put all of this in your food processor and blend it on the pulse mode, so the cherries are still a bit chunky.

Scoop oat/chia mixture into a bowl and add topping mix, and close your eyes and enjoy! It's heavenly!

Love one another!~Yvonne

Hot Raw Chef Contest

It's too late to vote for the Hot Raw Chef, but thought you may be interested in watching all the video entries still. Wow, there are so many delicious looking recipes that were entered. The winner will be announced on July 27th, only 2 days away. I wonder who will win?!?

Linky Loves...

We LOVE this song! It's SO upbeat, so fun, so engergizing!!! Give it a listen!



I love this artist's body art!

Love this paper art pendant. So very cool! Caylee is OBSESSED with the J.M. Barrie story of Peter Pan, she wants this quite badly. She said, in her finest english accent, "I will wear it to all of the finest occasions!". ;-) Love my girl! She is so fun!

Love this recipe of Coconut Boi's, for Raw Chocolate Fudge Cake and Raw Cake Decoration. I cannot wait to make this, and I will as soon as my Pacari Truly Raw Cacao Powder gets here! We just used the last of our Cacao powder this morning, in Caylee's banana, peanut butter, Cacao smoothie!

Off to do my zillion errands today!

Love one another! ~Yvonne

Honey Ginger Smoothie

I was given this recipe from a woman today, it's truly yummy, and so refreshing! Thanks to Renata. ;-)

Renata says it's a great recipe for getting things moving, if you know what I mean. Which I have needed help with. I have been having pretty much green smoothies only for 12 days now, and was wondering why things weren't moving the way they should. She suggested that I may be getting too much fiber, not enough water? Could be. Also, that sweet and spicy, help to get the liver producing bile, which helps get things moving. I had no idea! Great information! I will be much more conscious of how much water I'm taking in this week and see if that makes a difference.

1 whole honeydew melon
chunk of fresh ginger, I like a LOT of ginger
2 bananas
some raw honey to sweeten
3 cups of water
ice to chill

Blend it all up and enjoy!

Love one another!! ~Yvonne

Testing the mobile feature. :)

The low-down on Chia Seeds, and my Chia crackers!

They definitely aren't just for growing Chia Pets!

Check out this article on Chia, on the Raw Food World website, where you can also purchase these lovely little seeds. Such great information! I had NO idea that the teeny tiny Chia seed was such a powerhouse of nutrients!!! VERY cool!

I have some raw chia crackers in the dehydrator right now!

Here is the mixture in the bowl:



I just grab some out of the bowl with my hand and smooth it out:



Here it is ready to go into the dehydrator:



In the dehydrator, ready for temp 105 degrees Fahrenheit:



Here is the brand dehydrator I have:



I'll be able to flip them over in a few hours, and then they will be ready tomorrow for some yummy guacamole and salsa!

Thought I would post a picture of the finished product! They are so good!




Love one another!~Yvonne

My 40's glamour girl...

My daughter was in a 40's themed wedding yesterday, Joshua's aide Tiffany got married! Here are a couple of photos I took of her outside after the wedding. I used Picnic to change them to a sepia color. I just loved the hair and make-up!

Just a swingin' ...

He loves this swing! Joshua craves constant movement, so swinging is not only FUN, but important! ;-)