Really?? You Took Care of What??

Today I received some very interesting news.  It came in quite a roundabout way as well.  As some of you know it has been quite a rough go for us with Siberian Snow Babies and their Animals for Autism program.  We began to have severe misgivings with their organization and overall credibility.

We had asked for assistance, information, and explanations but received only excuses from the founder, Lea Kaydus.  After much deliberation we decided that this program was not what it had initially appeared to be and withdrew from the program and requested a refund of all monies we had paid in.  We were informed by Ms. Kaydus that a refund was impossible as Bella had been too highly trained in clothing removal assistance and could not possibly be used as a service animal for another family.  For this reason Bella could only be placed in a pet home.  We filed complaints with the Better Business Bureau, the Office of the Attorney General, State of Illinois and voiced our concerns to Global Giving (the Pepsi Refresh Program administrators) and Pepsi.  Since Ms. Kaydus refused to refund our money, we proceeded to ask PayPal for their help in recovering our funds.  We were told that we were outside the 45 day dispute window and had no recourse through PayPal.  We then took the next step and initiated a chargeback request with each of the banks we had used to in our PayPal payments to Ms. Kaydus.  (I should mention that all payments do not go to Animals for Autism or Lea Kaydus instead they are made to George Kaydus at the email address blueribbonwins@yahoo.com.  I wonder if this is how Animals for Autism keeps their income down – by not reporting it all.

Ms. Kaydus was not at all agreeable to the idea of returning any funds to us or any of the people who donated on our behalf.  So naturally, she contested our dispute.  We were given a chance to counter the evidence she provided and then final determination would rest with the bank.  After many months, we received notice from one of the banks that we were incorrectly (fraudulently) charged and our account was credited for the amount disputed, and the investigation closed.  We are still awaiting the outcome from the other bank and hold onto a small bit of hope that PayPal might reconsider their stance.  It is not likely though.

So back to the news from today – the grant administrators from Global Giving are headed out to Glenarm, IL to “volunteer” with Animals for Autism.

Today from Facebook:

As we continue traning and providing for the puppies who will become service animals, we’re especially looking forward to meeting the grant administrators! They’ve offered to add to the thousands of volunteer hours put in on behalf of the recipient families. =)
· 4 hours ago · 
I wish that the grant administrators had shown that same level of concern when I brought my concerns.  The ones so easily brushed aside because I was just a troublemaker.  I hope they are able to get something that resembles the truth from you.  Not that they know anything about dog training as they told one family that they could just as easily train a service dog themselves.  
I no longer wonder how a service dog trained by Siberian Snow Babies or Animals for Autism or any of their trainers will do in my house around my disabled daughter.  Lea Kaydus promised families highly-trained autism service dogs.  Something she can no longer deliver to my family.

Who Would Have Known: Autism and Stress, Service Animal Style

At one point the majority of us will feel the effects of stress. Some situations amplify its effect.

I would like to thank all of you who have been following the story of our dealings with Siberian Snow Babies’ Animals for Autism since April of last year.  Your support has been very important, especially in the very beginning.

I have never thought of myself as a troublemaker, or one who likes to stir the pot just to get people riled up.  I make every effort to move through life acting with honor and integrity.  In day to day dealings it is much easier to be honest and up-front, to tell the truth to each and every person.  In this way there would not be a multitude of stories to remember because inevitably the story will change based upon who is listening to make it more believable or appealing to them.

I like to think that most people are honest the majority of the time.  I do not believe that anyone still walking this earth is honest all the time (This is my opinion and not a fact).  Those people who are chronic liars put themselves at risk for increased health problems.  You see, lying triggers the release of the same stress hormones released by the bodies fight-or-flight response.  This increase in these stress hormones causes a boost in blood sugar levels and triglycerides (body fats) to be used by the body for fuel, an increase in both heart rate and respiration, a decrease in the digestive process and hypersensitivity of muscle tissue as the body prepares itself for a hasty retreat or a standoff.  This chronic anxiety and outpouring of stress hormones can result in serious physical consequences, including:

  • suppression of the immune system
  • digestive disorders
  • muscle tension
  • short-term memory loss
  • premature coronary artery disease
  • heart attack

Excessive stress or anxiety may make a person become so irrational that they cannot focus on reality or think clearly.  At this point, they may begin to experience physical symptoms.  So why do I bring this up?  You see, it is the same reaction for both the person lying and the person on the other side who does not believe the liar but cannot convince others that the lie exists.

It has been demonstrated that a person who tells the truth consistently finds it easier to tell the truth and a person who habitually lies finds it easier to lie as time goes by.  And although it may become easier to lie over time the knowledge that they may get caught in their lie still causes the rise in the stress hormones.  As the lie builds so does the stress.  And think back to the person who has caught the liar and yet very few are willing to listen.  That person is also subject to the same stress response due to excessive worrying, and anxiety.

Putting this in the context of our situation: there are the families dealing with children diagnosed with Autism (no stress there, right), who have to daily contend with those who truly do not understand and frequently toss out judgements on their ability to parent (after all, if that were my child they wouldn’t act like that).  These families are in a constant struggle with schools, insurance companies, and some even their own families.  Now add onto this an organization that was initially viewed as a godsend that has become the albatross around their neck (How could they have possibly not known to check more closely. I know that I would have.)  It is always easy to sit on the outside and give advice.  We do already realize things that could have been done better and more effectively.  We saw some of the warning signs but in our defense they were plausibly explained to those of us with no experience with some of the processes.

I have heard multiple times “Why would you choose an organization that was not a recognized 501(c)3″?  We were told that they had applied for tax-exempt Non-Profit status from the IRS and were awaiting final determination AND their Facebook Page STILL shows them listed as a Non-Profit (Yes, Siberian Snow Babies’ Animals for Autism, I am looking at you while I say this).  I have never applied for Non-Profit status, nor formed a service organization and did not know how this process progresses.  I know a bit more now.  I knew very little of Service Animal Training and was very intimidated by the costs (expected family donation) in order to receive a service animal from many of the training organizations out there.  I now understand why the cost is so high but I hope you can see why an organization which requests approximately half of that would be so appealing.

Our stress level is very high, our health has been affected and yet we cannot just stop.  We must continue to move forward and care for our children.  We still have our responsibilities to meet despite what has happened.  It hurts to see the “LIKES” increasing on their Facebook page, but we know that we made the right decision in leaving this program.  It is far less stressful than the continuous uncertainty that was our life while we were part of it.

Please read our story and share it with all that you know.  It will help us immensely to know that people are listening and do believe.

Resources of Stress and Anxiety Reduction:

Livestrong: Tips On Reducing Stress Anxiety
WebMD: Blissing Out: 10 Relaxation Techniques To Reduce Stress On-the-Spot

Additional reading about our story:

WICS News Channel 20: Parents Raising Concerns Over Local Autism Group
Kitsap Sun: 
Kitsap County family speaks out about group that promised service dog
StinkerBabies: We Will Not Go Quietly,  Update: We Will Not Go Quietly, A White Blank Page and a Swelling Rage
Lindserella: Time To Light A Fire
Seattle Dog Spot: Kitsap County military family says group that promised service dog deceived them
I Speak of Dreams: Another Fleecing of the Autism Community, Service Dog Edition

To Infinity and Beyond!

When given the chance to take the kids to see the latest Disney on Ice I must admit that I held onto a bit of trepidation.  Would our munchkin (she has autism, mild cerebral palsy, and sensory integration dysfunction) be able to handle the change, the people, the noise, the lights…all that which makes up a Disney on Ice show.  We have managed to make it through a short movie here and there but we are talking about a 90 minute drive there, then almost 2 hours of show, and a 90 minute drive back home with a stop for dinner tossed in there somewhere.  Wish I could say that I thought it would go smoothly but our life hasn’t been like that in quite a while.  What the heck, if you’re up for it.

We gathered up everything, and then a few more things just in case and headed out mid-morning towards our destination – Toy Story 3 on ICE!  We were full of hope, after all, Toy Story 3 has been one of her favorite movies (It was the last movie she and her sister saw together before sister headed off to college, kinda like Andy come to think of it).

The drive was uneventful, despite my arguing with the GPS as we neared our destination.  It insisted that I take one route and all the road signs directed us on another course – the GPS lost this round and we arrived in the parking lot of the ShoWare Center nevertheless.  I did not take pictures of the majority of the drive, needless to say that it was a typical Washington winter morning (read overcast, grey, windy, and slightly bleak and dreary).

A short walk from the parking lot and we arrived at the Will Call window.  We picked up our tickets and headed inside to be assaulted by the myriad of Toy Story 3 paraphernalia.  There were Buzz Lightyear cups filled with the deliciousness of snow cones (It was 45F outside and we were inside an ice rink but I digress), light-up swords, toy dolls, t-shirts and that most important official Sheriff Woody hat.  Avoiding the bulk of items we made it to our seat having only gained 1 Jessie doll to keep Woody company.  Then there was a short wait until the start of the show.

Once Mickey, Minnie, Donald and Goofy took to the ice there was a squeal of excitement from Faith as she pointed.  And then, when the toys took to the ice it was “Look, my toys – they’re alive!”  She spent the next 90 minutes watching every move, reveling in each new character who made an appearance and in short enjoying herself.  What a wonderful day.  I am so glad that we decided to take the chance.  Thank you for giving us the opportunity to be there.

Frustration Abounds: Service Dog Training Organization Worries

This is a bit of a rambling post, which really should not surprise you.  It is the beginning of my chronicle of our search to find a service dog for our 8 year-old daughter.  Allow me to introduce her.  She has Autism, mild cerebral palsy, Familial Mediterranean Fever Syndrome and multiple life-threatening food allergies.  She is a pediatric stroke survivor.  She is diagnosed with Rapid Cycling Mood Disorder and is developmentally delayed.  She has such a big heart, and is so loving that she is remembered by all those who cross her path.  She remembers all those she meets.  She has meltdowns.  Not little temper tantrums, or even big temper tantrums.  She EXPLODES!  She reaches that critical point so quickly that there is often little that we can do but sit back and watch, at least until her grandmother’s dog intervened.  The process was interrupted, redirected and she calmed.  She was still upset but did not reach the apex that she normally reaches.  That planted the seed.

My wife and I began searching for Service Dog Trainers/Training Organizations, especially looking for ones specializing in training dogs for people on the Autism Spectrum.  We began our search where so many turn for information – Google.  I am not going to take anything away from our favorite search engine; instead, maybe we didn’t properly utilize it.  We located an organization with significantly lower fees than the majority of the others.  They just so happened to be one of the top hits when we searched for “autism service animals”  This post is the beginning of our story dealing with this organization.  I wish the story were different…I cannot change what has happened but we are determined to make something good come from this.

I intend to fully document the journey using “Frustration Abounds” in each post title concerning this subject.  I will spread it out to make it a little easier to take it – there is a lot.  If you can’t wait and want more information – then leave me a comment and I will do my best to get back to you.