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One Day at a Time: Autism Service Animal Dream Falters

Today was better than yesterday.  That is a small victory in the books.  At the moment I am happy for these small victories and am taking one day at a time.

Since April of 2011 I have watched as a small “organization” in Illinois elevated my families hopes of obtaining a autism service dog to stratospheric heights and then within just a few months sent it all crashing down.

Since officially withdrawing from their training program – I believe that we were the first family to join them in 2011 – I have sought answers to question and even to this day I have received very little.  There are several people who have stepped forward in an effort to help us get those answers and I would like to say thank you to them and those for which they work.  Without further ado…thank you for shedding some light on this story:

Mike Brooks, WICS ABC NewsChannel 20 Springfield for your segment
Chris Henry, Kitsap Sun for your story and Meegan Reid for the great photo.
Jesse Jones, KING 5 Seattle, for your hard work and the segment airing soon.
Better Business Bureau of Central Illinois
Office of the Attorney General of Illinois
Springfield Autism Resource Center
The Autism Program of Illinois

I hope that it will not end here but continue to burn bright and bring out the truth of it all.  For this to happen I believe that there will need to be a constant reminder for the families involved to have closure.  I wish I could say that I thought it stopped with the families mentioned in the various articles – I have a sinking fear that it extends beyond that even beyond the confines of our country into possibly Canada, New Zealand, and Australia.  Each person who has posted a comment on the Siberian Snow Babies’ Animals for Autism Facebook page inquiring about a possible service dog was given instructions to email for further information.  Below is our email inquiry to Lea Kaydus, founder of Siberian Snow Babies’ Animals for Autism.

Hello,

 My wife and I are searching for a service dog for our soon-to-be 8 year-old daughter, Faith.  A very quick background on her and why we are seeking a service dog.  Faith had a right-hemisphere stroke prior to birth.  She is diagnosed with Autism, mild cerebral palsy, Familial Mediterranean Fever Syndrome, Rapid Cycling Mood Disorder and several life-threatening food allergies.  The stroke also caused a disruption in her growth – the left side of her body is smaller than the right side.  Although not as extreme as some it has been systemwide to include bones and internal organs.  As a result she has had developmental delays and her fine motor skills and coordination are very poor which is only compounded by increased swelling in her extremities.  

 We are hoping to find her a dog which can help her become more independent and less fearful.  To help her mobility: provide assistance when she is having difficulty walking, retrieve items that she has dropped, possibly open doors, assist with getting dressed.  Emotionally: to interrupt self-harming behavior, stay with her during the night and alert us if she wanders, help her calm during “meltdowns” and ease both transitions and public places by providing support.  If it were possible for her dog to alert us in the event of an allergic reaction.

With all this being said; a service dog is desired over a therapy dog.  Our goal is to help make her more independent and less reliant on our constant presence.

 Would your program be able to assist with these items?  What is your wait list?  Do you have specific requirements?  What are the anticipated costs?  

 Thank you so much for your time and help.

This was answered the next morning with the following email which included an application to their program:

Thank you for your inquiry about our service animal program.  The basic requirements for our program are a diagnosis of an autism spectrum disorder, be age 5+, and have a prescription from a physician stating the need for a service animal, none of which should be a problem for you.  I would be most honored to develop a training program for one of our animals to meet your daughter’s needs.  Some of the challenges you have presented are more time consuming than our usual requests from a training perspective, however, they are all attainable.  I will address each of your requests individually.

1 – Balance assistance with gait is a fairly common training challenge, yet unique to each individual.  Part of our application package is a request from you of a short video to help familiarize our team with your daughter’s needs.  A clip showing her walking and mobility challenges should be a part of that submission.

2 – Picking up dropped items – easily accomplished.

3 – Opening doors – easily accomplished.

4 – Assistance with dressing is a bit more challenging and depends on the specificity of the actual tasks.  Retrieving and passing on articles of clothing is quite doable, but I would like a clearer description of what it is you would expect of the animal.

5 – Interruption of self-injurious behaviors – easily accomplished through a combination of the service animal and ABA techniques, but I would like additional details about the specific behaviors we will be training to interrupt.

6 – Spending the night and wandering alert – easily accomplished.

7 – Calming meltdowns – easily accomplished through a combination of the service animal and ABA techniques.

8 – Allergic reaction alert – This concerns me the most.  There are two ways of training for this, and I will need to know what your daughter is allergic to.  At this point, I am assuming she has an anaphylactic reaction to whatever the allergen(s) may be.  The easiest (and safest) method of training for allergy alerts is to train the animal to alert in the presence or near proximity of the allergen.  Additional details will be necessary.

Training for an average autism service animal takes 12-18 months with 1000 to 1500 hours of active, hands-on time.  Most of these programs are actually completed close to the 12 month/1000 hour set-point.  With some of the advanced skills needed for your daughter, I feel the minimum hands-on time will be 1500 hours.  That is normally spread over an 18 month period, but if time is of the essence to you, the animal could be trained for longer daily periods, and still finish close to the 12 month mark. 

All of the animals in our program are generously donated by quality breeders who are our close, personal friends we have known since our “show dog days” many years ago.  All are from champion or grand champion AKC or UKC bloodlines and are of optimal health.  The average life span of the animal is 12-15 years, with most dogs ready to retire between 8 and 10 years of age.  At retirement, you can either retire him/her with you but no longer in service, or the animal can be returned to us to live out his or her retirement years.  There has been recent press regarding a gentleman whose animal was repossessed for what the agency considered just cause.  I will not comment personally, other than to say that when we transfer an animal to a family for service, we relinquish all rights to that animal and simply ask you to return it to us if it is no longer of service or you can no longer care for it. 

In addition to having donated puppies, we have also been blessed to have donated space in which to work with the animals, gracious volunteer puppy raisers, and some donations of food and other supplies.  We also have incredible trainers who work contractually for us at a rate of just $5 per hour.  They consider their discounted rates to be their gift to our families.  We even have a couple of junior trainers who are on the autism spectrum and working toward careers of their own in animal husbandry and training.  All of this takes place under the supervision of myself, and I am a Certified Master Trainer.  The actual cost to raise and train a service animal is in the $20,000+ range, but we are able to place our highly-trained service animals in the $5000 to $7500 range, and the pricing reflects the number of training hours required. 

I cannot make a final determination of cost without a completed application package, however.  There are many pointed questions in the application package, and each is extremely important for the development of the training program.  It is not a test, but the clearer and more detailed your responses are, the better we can map a course of action.  Once I have that in hand and can meet with our team, we can determine the necessary training time, and let you know the outcome.  Our general policy is that our families travel to central Illinois for the final phase of training, which is a week of intensive integration and proper handling techniques to use with your service animal.  If you case, I am thinking may be more appropriate for a trainer to come to you for that week.  Should that be decided, there will be travel fees associated in addition to the training program. 

At the present time, we do not have a waiting list, and we have puppies just entering the early “citizenship” phase of training.  However, the waiting list can and does tend to change from one day to the next.  I have attached a copy of our application package for you, and if you have any further questions, do not hesitate to ask.  You are also welcome to call me directly if you wish at 217-XXX-XXXX.  I spend much of my time with puppies and in meetings, so leave a message if necessary, and I will get back with you as soon as possible.  Thank you again for your inquiry, and I hope we can work together to enhance the quality of life for your little one.  

Sincerely,

~LM Kaydus, CMT, BSA, MAS
Founder, Animals for Autism
AKK National Rescue
Autism Mom 

And even more impressive was how quickly the organization’s board met and voted to approve our application; and how quickly we were matched with our 5-week-old pup.  And even though we had been cautioned because of the lack of trainer names listed on the web site and where they learned to train service dogs; we decided to proceed.  Hindsight is 20/20.  I can only hope that others will learn from our haste and make a more informed decision that might also include advice/counseling from a local autism resource center, discussion the organization with an autism resource center in their geographic area, advice/counseling from knowledgable dog trainers and verifying tax status, business status, and their compliance with regulations.

Consider reading a few of the following blog entries:

Autism Service Dog 101 by Shane Nurnburg of Autism Epicenter
Time to Light a Fire by living legend Lindserella
Hey Pepsi! by Katherine Stone of Stollerderby posted on Babble.com
Another Fleecing of the Autism Community by Liz Ditz of I Speak of Dreams

Just a little light reading to get your started.  Thank you for your patience.  More to follow in the near future.

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