Having Faith in Fur and 4 Paws for My Son with FASD
It has been four years since Chancer, our 90-lb. lovable golden retriever, joined our home as a service dog for our son, Iyal. So much has happened to our family over the course of time. Morasha, Iyal's same-age sister authored a book at age 11, about being the sibling of a brother who experiences FASD. Her book, My Invisible World - Life with my brother, his disability and his service dog won national awards and gave us an entry into school systems to educate about FASD.
When we first obtained Chancer in February 2008, Iyal, at age nine, could barely speak in couplets and we began our life with Chancer tethered to him for safety. Within the first six months Iyal walked safely alongside us and began speaking in sentences. He asked questions that expressed self-reflective thinking. Rather than copying Morasha he spoke from his own point of view and made decisions just for himself! And he began his studies in Hebrew to prepare for his upcoming Bar Mitzvah in May 2011. Iyal beautifully chanted his Torah portion in Hebrew which brought tears of pride and appreciation to the majority of the 300 people in attendance.
We know that Iyal brings much joy to his teachers as he strives endlessly to please in school. Although he struggles daily to navigate his middle-school landscape, he has managed to improve his reading up to a third-grade level. He has become increasingly aware that he is differently-abled than his peers and becomes easily frustrated by the ever-widening gap. However, Iyal continues to surprise us with unexpected gains as he explores the Internet producing power points and making movies with the assistance and supervision of his helper-friends.
Since Chancer was placed with our family as the first certified FASD Assistance dog in the world, 4 Paws for Ability, where Chancer was trained, has placed several more and continues to receive applications for similar assistance dogs. We feel very fortunate to have discovered this profound and unique intervention to help support Iyal. And we love to share our story of faith and fur with others who may also benefit from knowing that science perhaps, can transcend what we understand about the human-animal bond.
Okay. So maybe you have to be an “animal person”. Or perhaps you have to be the kind of parent who is driven to find solutions for seemingly unsolvable challenges. Since receiving our son’s diagnosis of Fetal Alcohol Syndrome, we have been humbled in ways we could never have expected.
FASD is like the undertow...it lies in relative silence beneath the surface of the individual gathering its energy and force. Marked by co-existing disorders and peculiar characteristics, the ebb and flow of these behaviors are not exactly invisible, but can remain hidden. Some symptoms can be as gentle as a tide or swell like a tidal wave, engulfing the individual and often the caregivers or family. Living with a child affected by prenatal alcohol exposure is like living with the constant anticipation of an impending hurricane. Witnessing your child drown in a whirlpool of chemical imbalance and then resurface, keeps you hyper-vigilant for finding safe ports in the storm.
Our son, Iyal, was born in Astrakhan, Russia over 9 years ago. Iyal was adopted by my husband and me at 14 months and was diagnosed with Fetal Alcohol Syndrome about the time he became 4. In 2000, Fetal Alcohol Effects was the term given to the approximate 90% of prenatal alcohol exposed children who did not exhibit the full features of the more severe form, Fetal Alcohol Syndrome.
Donnie with her kids
Because of the nature of Iyal's organic brain injury, most medications do not result in positive outcomes. In fact, they tend to make his symptoms/behaviors worse. While we have also used Physical, Occupational and Speech therapies...FASD seems to "live" outside the boundaries of these treatments...stubborn to change. Behavior Modification requires an ability to anticipate consequences for actions taken. Many people with FASDs cannot easily “learn from their mistakes". Their short term memory is limited, and unable to control impulses...they often act before they "think".
Treading water, we were always looking for new therapies, ideas...anything to help Iyal feel more in control and better about himself. Often internationally adopted children have experienced neglect or other kinds of abuse. As Iyal grew chronologically, attachment issues and post-traumatic stress responses became part of our landscape.
While I struggled with available options for support, it occurred to me that perhaps a Service Dog, SD, (also called Assistance Dogs) could be helpful to Iyal as well as the rest of our family. In truth it would "legitimize his invisible disability". Service Animals are legally defined (ADA, 1990) and are trained to meet the disability-related needs of their handlers/clients who have disabilities. Federal laws protect the rights of individuals with disabilities to be accompanied by their service animals in public places. Service animals are not considered pets.
In the spring of 2006 I began to research everything I could get my hands on about Service Dogs (SD). I was aware of the support that Guide Dogs for the Visually Impaired and Mobility Assistance dogs could provide. I had also heard about Seizure Alert Dogs and those that were trained to help individuals with Hearing Impairments. I found several articles illustrating how SDs were now being trained to assist those with "Invisible Disabilities" like Autism, Psychiatric and Behavioral Disorders.
In all my research with interventions and treatments for FASDs I had not found a mention of Assistance Dogs trained for this specific lifelong disability. As I learned more how SD's were taught to help children with Autism...the more excited I became about the possibility of a SD learning to assist Iyal! After reading several books and researching online I submitted an application to an agency in Xenia, Ohio, called 4 Paws for Ability. They were the first agency that began to train dogs to help children with Autism among other disorders. Within 10 months we would be blessed with a best friend for Iyal, named Chancer. Chancer was a 2 year old Pure Bred Golden Retriever who weighed 85 lbs!
How do SD's help individuals with hidden disabilities like FASD? SD's assist in several ways: they provide the child/adult challenged with this type of disability an opportunity to safely access different environments which result in improved communication and social skills. The dog's presence offers a calming influence and provides a sense of security to the child and the parents. Research shows that abstract and concrete thinking advance, focus improves, and the length of attention span increases. Emotional outbursts occur less often. The important role of the SD is affording the individual more independence and autonomy, helping them become a viable part of the community at large.
At 4 Paws for Ability the dogs are trained case-specific. Beyond the minimum of 6 months of Public Access training, another 4 to 6 months of training occurs using video of your child. 4 Paws provided us with a script of scenarios they wanted us to video tape. These situations included Iyal having meltdowns, tantrums, interacting with our daughter, the cats, other dogs, etc. This video then becomes the tool used to communicate to the dog what signals it will learn to assist its "human". Many children with FASDs have sensory issues causing involuntary repetitive movements. These movements thus determine the "signal" or "command" taught to the dog. The dog is then trained to interrupt the behavior by nuzzling the child or putting a paw on the child. Many children like Iyal require Deep Pressure to calm down an over-aroused regulatory system. An 85-lb. dog could provide much needed weight to help calm Iyal when he (the dog) is lying on top of him! Up until now I have "squished" Iyal on the couch by making him the middle of a “sandwich”.
Iyal and Chancer training to sleep
Another significant concern of ours is Iyal's safety; physical and emotional. Because of Iyal's impulsivity, he often darts out into the street or a parking lot without looking. Chancer was trained to be tethered to Iyal. A dual leash attached to a belt on Iyal and to me, will afford an opportunity to keep Iyal from running out into danger. This particular skill is also used for kids who tend to wander away from their parents.
If you are familiar with the concept of “the external brain”, imagine how you can apply this to a SD. We create external supports for individuals with FASDs that help them make good choices, offer companionship and provide trust and guidance. One of Iyal’s external brains walks on 4 paws!
To add to this amazing experience we were delighted to have well-known FASD parent-advocate and published author, Jodee Kulp, join us for some of the training in Ohio. She has been breeding poodles at her facility Knarlwoods in Minneapolis. Jodee, a founding Board Member for MOFAS began a pilot training program in her area. She has trained "Limey" to work with a 21-year old young man with FASD named Ken. Unbeknownst to me until just a few weeks ago...I had not heard of anyone with FASDs using a SD! Now, we not only returned with our new miracle for Iyal and our family...but Jodee and I had a chance to meet, (connect as only parents of children with FASD can) brainstorm and hopefully collaborate with our FASD efforts. To find out more about Jodee and her work visit www.betterendings.org.
Thank you for sharing in our adventure. There is so much more to tell you about the miracles these Service Dogs are bringing to families all over the world. If you have time and interest, visit the 4 Paws website at www.4pawsforability.org. You may also contact me at dkwinokur@charter.net . Perhaps in your or your child’s future there will also be a furry vehicle for healing like Chancer.
|