Another Pepsi Post, this time from Autism’s Ruff

This is a post from another family who was also part of the Pepsi Pup’s.
Speaking for Samuel
I am an autism mom. Due to my son’s lack of communication skills, I am his voice. I speak for him when society betrays him, I speak for him when insurance companies fight to cover his basic needs, I speak for him to push the schools to provide an appropriate education. What I did not expect to have to do was fight for him with an organization promising to help, nor did I expect to fight large corporations like Pepsi and Global Giving, yet here I am, one mom taking on the world… until recently when I found out that I am not alone in this fight.
Let me back up a little and tell you how our story got started. My husband and I had been researching for some time the benefits of an autism service animal to help our 5 year old son. He struggles daily with what most of the world takes for granted. He has very limited communication skills, high sensory needs, becomes easily overwhelmed in public situations, and is at risk for wandering. Perfect candidate for an autism service animal. The problem we encountered was that most of the organizations we looked at charged $15,000 -$20,000. That is an impossible amount for a one income, special needs, pastor’s family struggling to just make ends meet.
Then, we found Animals for Autism, an organization out of central IL, whose founder has an autistic daughter herself. They were giving away a free service dog during the month of April in honor of Autism Awareness month. We looked at their website, contacted the director, and began to check into them. They seemed a perfect match. The director/founder had tons of experience, a volunteer staff, answered our questions perfectly, and best of all, because they used donated dogs and supplies, and trainers who worked at a greatly reduced rate, the cost was only $5,000. We decided to apply for the free dog and go from there. Shortly after applying, we found out that they were attempting to get a $50,000 grant from Pepsi. They said on their Facebook page, their website, and even on the Pepsi Refresh website that the money would go to train up to 10 free service dogs. What an amazing thing to do! We gladly volunteered to vote and recruited others to do the same. Although each individual could only vote once a day, you could use the codes on Pepsi products to “power vote” for a greater impact. Animals for Autism emailed us 20 codes a day, sometimes more for us to use on our own computers. This went on for the entire month of May. Although I was a bit baffled by how they were coming up with so many codes, I was more than happy to help.
In late May, we were told that although our son had made it into the top 5 considered, he was not chosen for the free “Go Blue” service dog. However, we were told he was a perfect candidate for their regular program. We would need to act quickly though since they had dogs available to start training immediately, but had several others interested and the dogs would probably all be spoken for by the end of the month. We asked if we could still be considered for the Pepsi grant if they indeed got that and were told yes, if we joined now, and they got they grant, we would be considered to have the remainder of our bill covered. In order for it to be technically a free dog, the money we had already paid in would instead go towards helping another family. We put down our deposit and agreed to start making monthly payments. They also set up a donate button on their website to accept donations directly from there. We were hopeful the Pepsi grant would come through but felt that with the help of our family, friends, and community, we could come up with the $5000. We were sent a picture of a beautiful tiny white Siberian husky puppy that we renamed Shadow and were promised we would receive more updates, training info and pictures when things settled down. Our son, even with his limited verbal skills, carried the little pic around and said “my Shadow” when asked who was in the picture.
At the end of June, after two payments from us and donations from other individuals directly to their site, we found out that our son was selected to be a part of the Pepsi grant recipients for free service dogs. We were thrilled…
Things went downhill from there. Communications with the organization became less and less. We were told that the grant was changed to cover a new facility rather than training of the dogs, per Pepsi’s request. We were assured by Animals for Autism that the founder would cover the training expenses out of pocket herself instead. Updates and pictures never came. We were told that they had computer and internet issues and were busy. We began to connect with other families in the program… they had the same concerns. We found ads for service dogs on E-bay, ads for some of the same dogs we had been promised listed as for sale on puppy sites. We found out that the founder/director uses different names for herself and for the organization. We couldn’t find one person who had actually been matched with a dog from them. The pictures some of the families were given turned out to be dated from 2007, even though the dogs were born in March of 2011, and we were being told that Siberian Huskies are not appropriate for children with autism. We found out that the organization never even applied for a non-profit status although they claimed they were.
We began to ask questions of Animals for Autism, Pepsi, and Global Giving (the organization Pepsi worked with to oversee the grant distribution). We were ignored by Animals for Autism, and Pepsi and GG assured us that everything was fine. They had been checked out and were completely legitimate. We had no reason to be concerned. We were encouraged to work this out. When we continued to question what the grant was actually covering, we were told the information was confidential now.
At the same time, Animals for Autism’s website disappeared and they seemed to disappear entirely. Although they were supposed to move to a new location, nobody seemed to know where that was. We checked with the post office… no forwarding address. We checked with the animal control for the county they lived in and the county they were supposed to move to… no dogs were registered to them. We called autism agencies in the area… nobody ever heard of them. So, we contacted the IL Attorney General and the Better Business Bureau. They sent complaints on our behalf. The deadlines came and went with no response.
What brought us so much hope of much needed help, has become a nightmare. Precious time has been wasted with nothing to show for it. Hard to come by money has been spent out with little hope of ever getting anything in return. Animals for Autism goes on, Pepsi goes on, Global Giving goes on, but for us families time stands still as we struggle to know what to do, where to turn for help. Children are in desperate need of help and those who were supposed to help have turned away. However, they underestimate the power of the autism community. We have unexpectedly connected to one another in the midst of our struggles. Unlikely friends from all over the country and we are not going to sit by quietly and allow our children to be taken advantage of for profit… we won’t be silenced by large corporations. We are our children’s voices….

We drink Coke now – a “Bella” follow up

Many of you have asked what happened with Faith’s first service dog Bella. I posted a tiny blurb about it back in August. (Changing Paths)
The truth is, I don’t know what happened with Bella. I have no clue. No one has any answers, but pointing fingers abound. Pepsi and it’s charity partner Global Giving don’t appear to even care to follow up on the $50,000 they gave this “company”. I guess it’s a piddly amount to them and not worth the time to investigate. Goodness knows the flags have been being raised since AUGUST. The 10 families involved in this are nothing but names to them. But we are people. We are military. We are ministers. We are families that have been dealt a sucky hand known as autism. And we fight every day for things most people take for granted.
Since August we have been asking questions and raising red flags.
Since August we have been brushed aside.
Pepsi, you may have billions of dollars at your disposal, but I think you still need to answer the questions that have been raised by several families.
(Below is a blog post by one of the other families involved in this. Ashley from Stinker Baby. I have posted it in it’s entirety with Ashley’s permission. But take a peek at her blog if you get a chance. She is an amazing lady!)
 MONDAY, JANUARY 2, 2012

We Will Not Go Quietly

[Editor’s note: These are the facts as I have them.  I welcome any response or rebuttal from Pepsi, Global Giving, or Animals for Autism.  That would actually be a nice change.]

This is a story about ten families who had no idea they were about to be joined together in a most unexpected way.

These families lived all across our country, from Washington to Florida and scattered across the states in between.  These families had different jobs and roles in our community.  Some were military, some were ministers, some were students.  But as different as these families were, they shared two very important things in common.
1.      Each family included a child on the autism spectrum.
2.      Each family was desperate to find a way to provide a service dog to keep that child safe.
 A service dog can be life-changing for a family living on the autism spectrum.
Our service dogs provide a physical and emotional anchor for children with autism. With their child tethered to a service dog, families feel they are newly freed to engage in activities as simple as shopping at the mall. On the streets, parents are relieved of the worry their child might run away. In many cases, the service dog accompanies the child to school, where its calming presence can minimize and often eliminate emotional outbursts, enabling the child to more fully participate. Transitioning among school day activities is eased and the service dog provides a focus through which the child can interact with other children. This helps increase the opportunity for the child to develop social and language skills.
~ Autism Service Dogs of America

Most service dog organizations require families to provide a donation of $13,000 – $15,000.  While that still doesn’t cover all of the costs that go into training a service dog, it is nearly impossible for a spectrum family to even dream of coming up with that kind of donation.

Then one spring day, each family heard through the grapevine that a service dog organization (run by a family who had a daughter on the spectrum) was going to be competing for a Pepsi Refresh Everything grant for $50,000.  And if they were successful, they would be placing TEN service dogs for FREE!!
Animals for Autism (AFA) were suddenly heroes!
Even without all of their many press releases, word gets around in the autism community.  These ten families did everything in their power and then some to get the votes needed for AFA to win the $50,000 grant.  Because even if these families weren’t selected as recipients, it was a beautiful thing AFA was doing and they would literally be saving lives.  These families were committed and were more than happy to power vote ten times per day, collect codes, and bug their friends and family members to vote, vote, vote.
And they did it!
AFA was awarded a grant for $50,000 so they could place ten free service dogs.
A month later, the ten recipients were announced and suddenly these ten families were connected.
For better or worse.  Keep reading.
When the recipients were announced in July along with a picture of their matched puppies, each family was overwhelmingly honored and grateful for what this meant to their family.  A lifeline had been thrown in the form of a tether to a Siberian Husky.
Each family grew to love that little face in the pictures.  They couldn’t wait for more pictures or updates.
August came and brought with it the update that the Pepsi grant paperwork had been changed.  They were now going to be covering the cost of a new facility and supplies.  But the families weren’t worried because AFA explained that this would allow AFA to cover the training costs of the Pepsi Pups.
September brought pictures of the newly renovated facility.  While the families were excited to see where the puppies would be trained and readied to be brought home, they couldn’t help being disappointed that there were no pictures of the puppies.
October came.  The ten families were getting a little antsy to see how the pups were growing.  Some were wondering about financial contributions made by generous donors to help them reach their goal of having a service dog (they began even before the Pepsi grant).  E-mails were sent.  Facebook messages were posted.  Questions were asked.
And then October went.  With no response from AFA.
Little knots began to form in the stomachs of these parents.
November came.  These ten families who were so thrilled and hopeful began to become nervous and worried.
No information was available.  None.
Some phone calls were made to the number listed as AFA’s number.  It turned out to be a mobile phone.  Oh someone answered, alright, and smoothed things over, painting somewhat elaborate pictures of computer viruses and internet access problems.
It almost sounded reasonable.
Until the families started digging.  And what did they find?
They found ads on Ebay and puppy sites attempting to sell the very same puppies promised as service dogs.  Ads like this one.
They found data in the only provided pictures of the Pepsi Pups that showed the pictures were taken in 2007.
They found that Siberian Huskies are a very unlikely choice for a service dog.
They found that it is statistically impossible to have a group of ten puppies and every single one of them is of just the right temperament to begin training.  And even more impossible for every single one of those puppies to make it through training.
Families who had begun the program before the Pepsi grant was announced found that financial contributions had been made on their behalf and AFA never told them about it.
They found that despite repeated promises of acquiring nonprofit status, AFA never even applied for it.

They found that the Tax ID provided by AFA does not in fact belong to AFA.

They found that AFA has gone by different names.
They found that the owners have gone by several names.
They found that the e-mail contact has changed several times.
They found that there had never actually been any service dogs placed for actual clients.
They found that when questions were raised with Pepsi, Pepsi pointed to Global Giving.
They found that when questions were raised with Global Giving, they pointed back to Pepsi.
They found that, apparently, $50,000 is chump change to Pepsi and Pepsi/Global Giving doesn’t care at all as long as they don’t get their names muddied up in a mess.  “Just work it out,” they say to these pesky special needs families.
So these pesky special needs families took their concerns to the Better Business Bureau and the Attorney General of Illinois.
December came and with it the Better Business Bureau’s deadline for AFA to address the concerns of the families.
Lo and Behold!  A Christmas miracle occurred and internet was restored the day before the deadline.
AFA apologized but only on behalf of their villainous internet provider.
Then they posted “updated pics of the pups.”  They never assigned identities to these dogs.  The families who have been so incredibly desperate for information for six months are left wondering and guessing.  It can’t even be determined if these are the same dogs from the 2007 pictures or if there are even 10 different dogs accounted for.
And the pictures?  I swear you could hear Sarah McLachlan singing in the background.  The dogs’ condition was questionable enough that the album was shared on a lady’s animal rescue page!  The kennel definitely does not look like Pepsi’s $50,000 was spent there.
So where DID the money go?
And where are these highly trained service dogs that were so specifically trained at FIVE months that AFA could not possibly refund one of the family’s money when they grew too uncomfortable with the lack of information and general shadiness of the organization?
And why is it so difficult to provide a picture of the dogs training?  Or a picture of the dogs in a group?  How do we know they aren’t the same 3-4 dogs pictured on different colored blankets?
If it really truly is a matter of internet access, PICK UP THE PHONE!  Send a postcard!  They have the addresses for the families.  The families could send a self-addressed, stamped envelope if it’s really all that difficult.
The families have never been contacted concerning training needs.  NOT ONCE.  The family who asked to be allowed to visit to see things in person got a major runarond because it just wouldn’t be convenient.  All this despite what their website claims.  Oh right.  I forgot.  Their website disappeared from the internet as soon as concerns were raised.
This story is Not. Over.  It can’t be.
Because there are ten families with children who are just a prayer and a blessing away from being one of those heartbreaking stories on the 6:00 news.
Because the autism community sticks together.  You mess with one of us and you’re messing with all of us.  And despite the circumstances of these families meeting, they are connected and bonded in a most unusual way and will continue to support one another for many years to come.
Because there are ten beautiful and amazing children with autism who have been told they are getting a dog.
Because despite what Pepsi and Global Giving suggest, we will not just go away and be quiet.
Because we will not stand for people who prey on the desperate fears of special needs families.
Please visit http://animalsforautism.com if you are interested in information about finding a reputable service dog organization.  That’s not a typo.  One of the families involved has been inspired to aid families in their search for service dog information and very cleverly bought a familiar domain name to redirect (redirect = rescue) traffic.

Photo a day challenge – January 2012 #JanPhotoaday

I spotted this on Facebook and it looks like fun. It’s a photo a day challenge. Each day will bring a new picture and will be tagged as #Janphotoaday. You can read about the challenge here:

fat mum slim

Here is the calendar of what each photo will be of:

 

All I want to know is, what is a letterbox???? Yes, I’m serious. Is it my mailbox??

Ok, Let’s get started.

#1 Me. This is me, right now, using my macbook’s camera. No primping, no make up, no special effects. This is simply me.