"Chancer: a service dog that offers healing through fur-covered love" A Story of Companionship by Donnie Kanter Winokur

In 1999 my husband and I created a family when we adopted two unrelated babies, just 16 months old, from Russia.  Like all parents we had dreams for our son and daughter to grow up happy and healthy. The future held such promise! Later we came to find out that our son’s nightmare began before he was even born.

When Iyal was four years old, we learned that his birth mother had consumed alcohol during her pregnancy.  He was born with a life-long birth defect, fetal alcohol syndrome, the most severe form of fetal alcohol spectrum disorders (FASDs).  As in the case of most women who drink while pregnant, she probably did not know the devastating legacy she was leaving her son.  FASD is the leading cause of intellectual disability in the western world. This umbrella term is used to describe the range of effects that can occur to an individual who was prenatally exposed to the toxin, alcohol. Besides cognitive impairment it can include; social, emotional, behavioral and physical challenges with a predisposition to a host of developmental conditions and psychiatric illness.  FASD is often accompanied by ADHD, autism, OCD, seizure and attachment disorders.

We realized that Iyal would always need “an external brain” to compensate for the organic brain damage that left him vulnerable and unable to make choices for a “happy and healthy life” on his own.  We reluctantly comprehended that while Iyal would grow up like his peers on the outside - on the inside his development would remain stunted creating a phenomena called dysmaturity. The gap would widen as his neurotypical sister, Morasha, would soar through her life, unburdened by extreme impulsivity and a lack of understanding between cause and effect.  Abstract thinking would exist very conditionally.

Perhaps what is most agonizing about this disability is that it remains hidden or invisible until those who experience FASDs find themselves at the center of a tornado that has wreaked havoc for those around them. The Center for Disease Control (CDC) states that nearly 1 in 100 live births are fetal alcohol exposed. Half of these individuals will experience trouble with the law, and difficulty completing school while 90% will develop psychiatric disorders and remain unable to live independently.  And yet they “look” just like you and me.     

People with developmental disabilities are often the victims of bullying and teasing because of their unintentional behaviors and vulnerability.  Research suggests that building a circle of support or community for those living with disabilities strengthens the outcome for the individual.  So how could we do this when the disorder rendered Iyal unable to interact with others in a meaningful way?

We struggled as traditional therapies were not helping Iyal to “function” in his world. The decision to obtain a service dog for Iyal rose out of frustration, heartache and the desire to find a way that Iyal could feel more grounded. It became evident that we had to “think outside the kennel”.  Were any dogs being trained to support children living with FASDs?  Not until Chancer, Iyal’s impeccably trained 90-pound golden retriever.  Since 2008, when Iyal obtained the first certified FASD Assistance Dog in the world; so much has changed!

As a service dog, Chancer’s presence legitimizes his invisible disability. He validates Iyal’s experience – even if it appears like willful disobedience to others.  He provides sensory support when Iyal feels overstimulated or “hyper”.  Difficult emotions and behaviors are mitigated through Chancer’s training through behavior disruption.  He functions as Iyal’s ambassador to the world paving a path for communication and acceptance while lowering anxieties.  Their mutual love is profound.

We are thankful for the gift of our children, the understanding of disabilities we have gained and the opportunity to help others.  As a family, we advocate for those who are differently-abled.  Morasha’s award-wining book, “My Invisible World – life with my brother, his disability and his service dog” offers support internationally to siblings of those with special needs.  Our story is being developed into a movie to offer hope to other families who struggle with similar challenges.  That’s a lot to be thankful for…

Find out more about the movie and go to: www.thechancerchronicles.com.

"Disability Community Involvement—Making Their Voice Count, by Raising Our Voices" An Advocacy Story by Norma Stanley

For most people, it isn’t until an issue or situation personally impacts them before they hone in on the challenges they and others like them are facing, and begin working for positive change.  That’s the case for the millions of people going full-throttle behind campaigns to raise funds for specific causes, lobbying for bills to change legislation, generating awareness about the issues and personally advocating for those who can’t do it for themselves.

That was definitely the case with me.  Although I was always sympathetic to the challenges people with disabilities faced, I never really thought about how difficult it was for the families to manage the various aspects of those challenges.  That was until I had my daughter, Sierra, 24 years ago, who was born with cerebral palsy.  It was at that time that I decided I was going to do everything within my power to ensure that she and others like her, had what they needed to live their best life possible.

Figuring out how to advocate for my daughter was something else again.  I admit it, I’m not one to stand in pouring down rain or the scorching hot sun carrying signs and shouting out messages.  I fully support and encourage their efforts; it’s just not the way I felt I could be most effective.

However, as a public relations and multicultural marketing professional for many years, as well as working as a freelance journalist, I decided I could make the most impact by doing what I did best…telling the stories and sharing the facts through the media.  So I began writing about the people, their needs, their families, their challenges, their achievements, the services, the supporting businesses and organizations, the advocates, the government, etc.  Whenever and wherever I could infuse key messages about the disability community, I did just that. 

I did it by writing my book, The Elected Lady—Finding Victor in the Challenge (Words of Faith, Reflections and Inspiration for Mothers of Special Needs Children and Other Moms), in the hopes that it would bless other moms like myself, with its spiritual content, poems and personal accounts of the trials and triumphs of four mothers handling their children’s disabilities.  The book also includes personal stories from Kate Gainer, a well-known staunch disability activist in the Atlanta community, who did not let the fact that she was born with cerebral palsy stop her from having a full life, including getting married!  Kate has been an integral part of successful initiatives on behalf of the disability community through various organizations, including the Georgia Council of Developmental Disabilities and she continues to inspire me.

As a multicultural marketing and PR consultant, I raise my voice by developing workshops to help educate companies on the value of designing and executing marketing programs targeted to the disability community, the largest minority community in the nation (56 million people), encompassing every race and economic status.  I also do it by encouraging clients to financially support the various organizations within the disability community, via their corporate social responsibility efforts.

I volunteer my time, professional expertise and financial support to non-profits like AADD, Dentistry for the Developmentally Disabled, All Children Are Special and others whenever I can.  In addition, I share as many positive stories about the amazing things people with disabilities are doing across the country and the little-known achievements being made and spoken about, on my online radio talk show, “Exceptional People, Exceptional Lifestyles.”

These are the ways I try to raise my individual voice and make it count on behalf of my daughter and the many families of children with disabilities and it has been a blessing to serve.  I encourage you to raise your voice in whatever way you feel comfortable and inwardly led, to speak up, stand up and show up for the disability community and the many mental, physical, financial and emotional challenges families are facing every day.  It’s easy, it’s fun and it’s worth it.  Let’s be sure to make our voices count- for them.

"Wait, you have a sister?" A Sibling Story by Laura Putz

“Wait, you have a sister?”  I remember turning my head around to stare at one of my college roommates after she made this statement.  “Of course, I have a sister,” I responded as I pointed to a framed photo of my sister and me on my dresser.  “Oh, you’ve never mentioned it, so I figured you were an only child,” she replied.  We moved on to talk about something else (maybe what tendencies I may have displayed that made her think that I was an only child…maybe my hogging the bathroom?), but something about her observation made me pause.

My sister has a smile that can inspire anyone to smile back no matter how bad a day they are having.  She inherited the natural curly hair that I will always envy, and I have what is kindly called “wavy” hair (not really straight, but not really curly).  We don’t look too much alike (one of us favors our father and the other our mother), but I believe that we have the same the laugh.  She can pick out a beat in music and move her foot to it while I am the one who is constantly a beat off the rhythm.  She also has a serious developmental disability that requires constant care and has left her with impaired mental facilities.

Growing up in a small suburb of Atlanta, all of my classmates and friends knew that my sister was “different.”  Of course, when all you want to do is fit in, anything connected with being “different” isn’t considered to be good.  When I went away to college, I dutifully put up the photo of the two of us, and went on with my very important social whirl.  My roommate’s comment made me think.  Yes, I have a sister, but our sibling relationship would always be different from others.

I love and care for my sister very much.  I always want her to be safe, loved and happy, as everyone wants for their siblings.  However, my relationship with my sister will always be different from other sibling relationships.  I’m not able to call her and tell her about my day or share an eye-roll with her when our parents may be acting a little nutty.  On the other hand, I feel more protective and responsible for her well-being than I would otherwise.  She and I have been very fortunate to have parents that have planned, and continue to plan, for her care.  I’ve always known that one day it will be my responsibility to carry out these plans.

I think that I will always be a little jealous of the relationships that others get to have with their siblings.  My husband will tell you that I can get a little frustrated with people who constantly fight with or ignore their siblings.  As I look at my relationship with my sister now, many years after my roommate’s comment made me pause, I see how our relationship has influenced other important relationships in my life.  I have a very close relationship with our parents that I think partly comes from my admiration of how they raised and cared for us both while also be strong advocates for my sister.  I have several amazing close friends, and these friendships have always been important to me.  I feel that one of the reasons that I have made these friendships a priority is because it is something I wanted to have with my sister.  My husband is one of the most patient and understanding people I have ever met, and I know that it is one of the reasons why I love him.  I know that it was my sister who made me appreciate these traits.  I may not be able to have what I consider an ideal sibling relationship, but I know my relationship with my sister has greatly influenced my life for the better. 

The same blog...a different lens.

I became the President of the All About Developmental Disabilities (AADD) Board of Directors last July, having been involved with this organization for over 6 years.  My story of how I became involved with AADD is not that interesting...in fact, it is boring.  I was a lawyer who took on a pro bono project to revise the charter and bylaws of AADD...it does not get drier than that.  But through this process I began to learn about AADD and its mission and I saw an organization that was quietly but passionately doing amazing work in the community. 

I was invited to join its Board of Directors and although I was somewhat nervous about my lack of knowledge around developmental disabilities and not having a direct connection to the cause, I was interested in learning more.  And then I heard THEIR stories...the parents trying to advocate for their children in the school system, the women who had been victims of abuse, individuals on the seemingly endless waiting list to get waivers for services, families trying to stay together, individuals with developmental disabilities receiving awards from their employers for hard work and dedicated service, graduates from the Partners in Policymaking class impacting legislation and more.  Some stories were heart wrenching, some stories were uplifting, but what was clear was that there is a real need...for services, for resources, for leadership, for volunteers, for money, for waivers, for engagement, for thoughtful new ideas and approaches. 

What is also clear is that the people behind these stories are tenacious problem solvers every day for issues big and small.  They have a wealth of knowledge through their experience and we wanted to create a forum where the experiences, the information and the resources can be shared with many in an informal way.  Their stories may teach you something new – they may be a familiar story to which you can relate – they may make you laugh or cry – or, as they did for me, they may inspire you to get involved.  Welcome to our new blog.

In the Limelight: Susan Berch, Former AADD Board Member

At the June Board of Directors meeting, self-advocate and AADD Board Member Susan Berch read a letter to share the impact the Agency has made on her life.  We were deeply touched by Susan's sweet letter, and asked her permission to share it with our readers. 

Dear Dave,

I just wanted you to know you have impacted my life in such a positive way.

When I was a young kid, I didn't speak up very often.  I guess I just didn't think about it at the time.  I had a difficult time making it in middle and high school because I was shy and it wasn't easy making friends.  I had a few, but I never got asked to dances or the prom.  It didn't bother me much at the time. Years later, I went away to a Vocational School called Warm Springs.  I made several friends there.  One of my best friends lives in Athens and we take trips together.  We've traveled to Alaska, Hawaii and in two weeks we are going on a cruise.

When I moved back home, I joined some social groups and made friends.  I obtained a job at Jewish Family & Career services in July of 1993 and moved out on my own December of 1993. Several years later, my friend, Linda Danzig told me about this wonderful organization called Partners in Policymaking.  She told me I should get involved and she kept talking about it.  She encouraged me to apply, which I did.  When I received the letter that I was accepted, I was so excited.  I learned so much about people's rights with disabilities, the challenges we face and so much more.  The one thing I have found most helpful to me is to become more assertive.  That's always been a hard obstacle for me, but since I have graduated from Partners, it has become easier.

Everyone should be given a chance to live on their own, obtain a job, make friends, vote, travel, take public transportation, etc.  It's not always easy and it takes us longer to comprehend tasks, but we can do it if we are given the opportunity.  I feel honored to have been on the Board of AADD and learn what AADD is about.  I want to thank you, Dave, personally for all the encouragement you have given me.  I wish you well on your future endeavors.  I will miss you. I also want to thank the Board for being part of your committee and helping others.

Gratefully,
Susan Berch

Classic rock buff Susan Berch has served as an enthusiastic member of AADD's Board of Directors for six years.  When asked why she became so involved with the organization, she told us "because AADD has helped so many people with developmental disabilities who desperately need their services when it comes to obtaining employment, finding housing, and regaining custody of their children."

Now that she has some extra time, this summer Susan hopes to make a difference in children's lives by becoming a member of Happy Tails Pet Therapy along with her furry friend, Gabby.  When Susan is not spending quality time with Gabby, she enjoys traveling, reading, going to the movies, watching TV and frequenting ethnic restaurants.  If she could trade place with any animal, she would be a dog, joking, "I'm jealous of all the attention they receive."  Her personal hero is First Lady, Michelle Obama for her understanding and compassionate character.