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….