Monday Apr 25, 2011

Art for Autism: Part II

A great new chapter in the story about how my daughter Bellamy is helping other families affected by Autism through her art work. Last year her painting went quickly during a silent auction to Mötley Crüe's front man Vince Neil at the annual Autism's Angels Gala put on by F.E.A.T.  This year Bellamy's painting was to go during the live auction.  We were extremely excited for this, and unlike last year, we actually were lucky enough have been graciously donated tickets to this years event.  We even got to ride in a stretch Hummer limo. Less than an hour before, I was coaching FC Lucky Charms for their 4:30 PM game that occurred in 90F temps.  Needless to say I was a bit rushed, and I don't think I stopped sweating until about midnight.  But that didn't stop my Charm from running out to give Mommy and Daddy a hug. :)

Once we got to the benefit and the artwork was taken backstage for the live auction, something very cool happened.  The very same Patron of the Arts, Vince Neil, was also in attendance and while wandering around, he saw Bellamy's painting back stage.  He told the F.E.A.T. people that the painting would "match nicely with the one he bought last year", and he wanted to know "what it would take" for her painting not to go on auction and allow him to purchase it.

The folks at F.E.A.T. told him to make them an interesting offer.  A bit later in the evening, but before the live auction started, the F.E.A.T. Fund-raising Chairperson stopped by our table and told us that Bellamy's painting would not be on live auction because Vince made her an offer she couldn't refuse. Honestly we were a bit disappointed that her painting wouldn't be auctioned live, but we were definitely excited to find out what this "offer" was. 

On with the live auction.  First item up for bid was from Vince Neil, a guitar that would be signed by all of Mötley Crüe, and included 5 backstage passes to an upcoming concert at the Red Rock Casino and Resort. That package sold for $3k. 

Turns out in order to ensure Vince would be the owner of Bellamy's second masterpiece, and her entire collection (except for two exclusive pieces for family members), he offered up an identical package and then some.  Right after the first Guitar sold, he got up on stage and announced the new package + matching donation. Unlike the first auction, Vince did the auctioning himself.  He stipulated the bidding would have to start at $5k and if someone bought the second package for $5k, he would make a $5k donation.  As you can imagine, the generated both applause and excitement, and the second package quickly sold for $7,500.  It turned out that part of the "deal" also included that he would also match the what the first guitar sold for.  To top it off, Vince Neil also paid $500 for Bellamy's painting, which was twice the amount that bought her first painting for.

All told, Bellamy's painting + Vince Neil's generosity help raise over $16,000 for families affected by Autism in Southern Nevada.  Oh, and we got a picture this year with Bella's Patron.  ;)

Thursday May 13, 2010

Art for Autism

My sister in law (Angel), who serves on the board of Families for Effective Autism Treatment (FEAT), had a great idea for their annual fund raising event "Autism Angels Gala".  Proceeds from this annual event go to benefit families affected by and living with autism by providing a variety of services, education, and most importantly advocacy for dealing with everyone and everything (especially things like school district IEP's).   Angel's idea was to have Bellamy paint a picture and put it up for auction at the event.  She brought over a large canvas, some paint and over several nights we let Bellamy paint.

One destroyed kitchen table later and we had a masterpiece. ;)

Now the special part of the story is who the high bidder was.  It was Vince Neil, front man of the legendary rock band Mötley Crüe

It's not that Vince is a celebrity, or that his band provided much of the soundtrack to people like me who grew up in the 80's that makes the story.  It's the fact that he was touched seeing Bellamy's Story (a photo and bio accompanied the painting).  And for her story to touch someone who lost his own daughter to cancer in 1995,  well, that's what makes this story extra special to me. 

Wednesday Sep 24, 2008

First Day of School for Bellamy

First Day Of School!

Bellamy starts school today, a little more than a week after she turned 3 years old.  This is a picture of me saying goodbye as we have a bit (read "a lot") of separation anxiety even when I leave the room, so we felt it best for Mom to take her alone.   Bellamy is entering the program for kids with Autism in the Clark County School District.  She'll be going from 9 AM until 3 PM, 5 days a week.  My wife talked to the mother of a child that went through the program and now he's a "typical" kid (by standardized tests) that is actually in my 7 year old daughters class.  You'd never guess that when he started the program he was diagnosed with Autism and had zero speech.  We will also continue with the private occupational, behavioral, and speech therapies that we've been doing since about March.  She's going to be one busy 3 year old.

We are hopeful, excited, and scared all at the same time.  We've seen great progress over the last 6 month, and can't wait to see how she will grow.  Maybe in a couple years you'll be reading this blog and the topic will be about coaching her soccer team and how she scored her first goal.  Fingers crossed!

Sunday Jun 15, 2008

Happy Fathers Day

Belly Swin

It's been said that adversity does not build character, rather it reveals character.

All I can say is that our adventures in autism have made me a different person.  Hopefully for the better.

Happy Fathers Day! 

Friday May 09, 2008

Diagnosis: Autism


It's been a while since our last update on Bellamy.

Bellamy has slowly progressed with the help of Nevada Early Intervention Services.  She has started attempting words, and seems to understand much more than she did even several months ago.  However, with her non-eating issues and sensory integration disorder needs, we thought it was time to do some private therapy on our own.

A friend gave us the name of a great occupational therapist, who has taken Bellamy under her wings.  Tania who runs the Achievement Therapy Center has become an angel to us, as well as her assistants, Jodi and Julie.  They are going to work on waking her nerves up, stimulating her vestibular sense, as well as her feeding skills.  We are taking baby steps with this process, but we can see little changes with every session.

We also went to see a DAN! (Defeat Autism Now) doctor.  DAN! doctors take a biomedical approach to autism.  It is the belief the too many antibiotics can destroy the gut, then add vaccines on top of this issue, and you have severe problems.  We share the belief with the DAN! approach that vaccine injury results in autism.  As a baby she had far too many ear infections and antibiotics to keep track of.  Then, right before Christmas in 2006, she had a shot while starting to get sick.  We really debated taking her to the ER on Christmas day.  The day after she was diagnosed with pneumonia.  She never really was the same.  She lost all her words, became less engaged and we truly feel that is when we lost her.

As part of the initial DAN! work up, we had several labs drawn, including a urinalysis for heavy metals.  We recently received this back, and found that she is both moderately toxic with mercury as well as xenobiotic toxic (most likely from antibiotics).  We are still feeling sick about this.  We have a plan of attack with the DAN! approach.  We started her on MB12 injections to try to stimulate some more language (she has been attempting many more words since we started).  We are also treating her internally for yeast that was caused by antibiotics and has seeped through her gut into her blood.  Once we can try to heal her gut, we will then try to pull some of the toxins out.  A long process, but it must be done one step at a time.  For those that believe that Thimerosal (aka mercury) was removed from all vaccinations, that is bad information.  Starting in 1999/2000 it was starting to be removed, but it is still present in some vaccinations, including infant flu shots.  If you want to watch a story that nearly mirrors ours, watch the story of the Hannah Poling.  Ask your doctor if there is any thimerosal in the shots.  If they don't know, wait until you can get a 100% sure answer.  Demand proof.  We are huge believers in changing the vaccination schedule.  Do one shot at a time.  There is no reason whatsoever that a child should be subjected to 5 or more vaccines at one time.

Just this last week, we finally got into the best doctors in Las Vegas for diagnosing kids.  They have private practices, but the cost is upwards of $2000 per doctor.  Fortunately they team up for a nonprofit organization called the Lili Claire Foundation, and do the clinics for free.  The only problem is an extensive waiting list.  After 9 months of waiting, we got in last Tuesday.  The doctors spent about 3.5 hours interviewing us and observing her.  We got the words that no parent should ever have to hear: Autism.  In a way we are actually relieved, because we really have known this in our hearts for some time.  There were no tears on Tuesday, just an energy that lit a fire under us that will propel us to do anything and everything possible to help her.  We do not know yet exactly where she fits on the spectrum, this is something we will find this out during our feedback appointment within the upcoming weeks.  We have hope that it will be on the milder end, as the doctors noted that she had some promising skills already going for her.  They also noted that possibly with six months of ABA (applied behavioral analysis) therapy, that she will most likely be unrecognizable from where she is today. We are  now starting the process of searching for hidden funding programs, and trying to qualify, as professional ABA therapy usually starts at about $60,000 per year.  No, it's not covered by insurance.  At least not in most states, including Nevada.  Yet.

We are doing fine despite of it all as we knew an autism diagnosis was already a real possibility.  It's stressful and our lives have changed in ways we could have never imagined, but we are coping.  Her sisters are a wonderful support for her, and have more love and patience than we could have ever imagined.  Every little new word out of Bellamy's mouth is like a party for all of us.  We are working on balancing out time for each of them, finding that balance is tough, as Bellamy needs constant guidance.  We are taking one day, one word, one little piece of progress at a time.  Our hope is that within the next few years she is indistinguishable from her peers, and she will be lucky enough to lose her diagnosis (which many kids have with early intervention and good therapy).

Monday Apr 28, 2008

A Song for Autism

Where Have You Gone?  This song is written and performed by Richard Femenella, the GM of the Las Vegas Charlie Palmer Steakhouse about his son Joey affected by Autism.  Our connection with Richard is we both strongly feel our children were affected by vaccination injury.   This song played during a "presentation" of children affected by autism in Southern Nevada.  It was heart breaking for so many reasons (I'll admit I cried), but one of the biggest was the fact that so many of the pictures of the children showed direct eye contact.  It's hard to understand just how hard, direct eye contact that is, for children who are on the spectrum of autism.   I think that fact was lost on the all the rich people that attended (read donors).  But for a fundraiser, that's what you want...Rich people. 

Please have a listen.

 My wife and I were proud "donor" recipients of tickets to the $1000 per person "Autism's Angels Gala" hosted by F.E.A.T. (Families of Effective Autism Treatment) of Southern Nevada.  Yes, I wore a suit.  Pictures here.

Note:  All Rights/Credits to the song: Richard Femenella and David Vella

(No copyright info on the CD that was given in the Swag bag.  But I felt it would be a better "good" for more people to hear this song than not)

Friday Apr 18, 2008

Avatars for Autism

If you're into the whole themed avatar movement, consider supporting Autism by creating an avatar with a puzzle piece in it.  April is Autism Awareness Month.


Sunday Apr 06, 2008

Please Watch This Video

Via Linda on Twitter

General Motors is donating money to Autism Speaks if you watch a commercial for the new Chevrolet Malibu.  Please watch, every penny counts!  (Yes, I've found my cause).

Wednesday Apr 02, 2008

World Autism Awareness Day


Today is the first ever World Autism Awareness Day as designated by the United Nations.  CNN is doing a really good job with coverage of family stories, doctor interviews, and (my favorite) grilling of insurance companies who refuse to cover treatments for autism.  The personal stories give you hope and pull at your heart (and for some reason are making my eyes leaky).

Learn the Signs, Act Early


My name is Craig Bender aka ThinGuy. I'm a Principal Software Developer for Oracle's Virtual Desktop Engineering group.

I architect and evangelize the use of Oracle's Desktop technology including Sun Ray, Secure Global Desktop, and Oracle VDI.


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