MADISON & DUTCH
Madison, a beautiful 14-year old girl, started high school this year with a social burden rarely experienced by most kids her age. Madison has Prosopagnosia, face blindness, the inability to recognize or remember the faces of the people that she sees every day. Rarely has a teenager struggled so ferociously every day, inch by inch, in order to achieve just a little independence.
Since she was three years old, her family has struggled with the dizzying effect of attempting to understand what was happening to their daughter. Eventually a diagnosis emerged that terrified her family – Prosopagnosia – a condition that currently has no known cure.
Imagine yourself in high school again in the midst of a new awakening of social activity with hundreds of students – some of which are your friends – yet you cannot recognize them if they walk up to you at your locker. Other students, as expected in such a setting, establish their confidence by making fun of the person who is struggling. You are a walking target for this contingency.
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Madison has new hope in her life and her parents have hope that she has an improved chance to develop a growing independence from her severely restricted life where each person she encounters may be friend or foe.
Not recognizing the faces of the people we know, especially as a child, would naturally cause one to feel lost much of the time. Without one or two trusted people nearby that she can recognize by voice or sometimes by a characteristic such as a hairstyle or glasses, it is impossible for her to identify the people around her. Identifying people by characteristics carries its own risk, as it is easy to mistakenly approach the lady with the brunette hairstyle only to find out that someone unknown has the same hairstyle as the person you know, and that person may appear startled that you approached her.
Madison’s new hope is found in Dutch, a Bouvier des Flandres puppy. Please read on to hear Madison’s story continued by her mother, Rebecca:
“In 2010, we finally learned that our daughter, Madi, had two related neurological conditions called face blindness and place blindness (prosopagnosia and topagnosia). Soon after we discovered that she had a type of muscular dystrophy that she and I share.
In the beginning of this process, we were focused on finding solutions to keeping her safe, especially with our close proximity to a registered sex offender who moved recently into our neighborhood. How do you teach your kids about stranger danger when they can’t recognize people by their faces? I could show her pictures of sex offenders all day and she would never be able to recognize them if she saw them on the street. At age 11, Madi had such fear of being in the front yard at home by herself because she was fearful of being separated from her family. As parents we worried for her safety just doing things that typical kids do – riding her bike or playing basketball alone – we always were nearby, keeping a watchful eye on her and worrying that the one time we might not be there to supervise, something bad might happen. Her independence has really suffered because of safety concerns over the years.
We are still trying to understand more about our type of MD, as symptoms and progression varies from person to person. Madi does very well on a daily basis, but has lived with chronic leg pain since she was 6. She has never been able to run very far or exert herself for very long without having pain and fatigue for a couple of days. She struggles to keep up in PE classes at school and does so on sheer determination. One of Madi’s wishes for years has been to go through our neighborhood park to her grandmother’s house on the other side by herself, but for safety and health reasons, she has not been able to.
After getting separated from Madi at the Texas State Fair in 2011, we realized the seriousness of our situation and reached out to Christine and Hilton for advice. We simply wanted to know if dogs could be trained to help kids with face blindness and navigation challenges. What we got was so much more than we ever hoped for... a puppy bound for work as the first service dog cross-trained for face blindness.
When we first received Dutch, we hoped that he would eventually learn to serve as her guardian, and guide her into independence as she prepares for teenage years and beyond. I can’t quite put into words, but we realized very quickly that Dutch was the right one for us, and he had such a big job ahead of him to do. Once he started to spend time at our home, we saw him become a loyal member of our family. At 5 months of age he was naturally protective of our home. At six months, he began to take care of Madi and draw her outside more without us as she walked him. People are naturally drawn to Dutch so we realized that he was serving as a fantastic social buffer for Madi. People ask her about Dutch which gives her great practice at talking to curious people while being safe. At seven months he defended her calmly against a stranger visiting next door who approached Madi uninvited, which was the defining moment when we realized our lives had already really changed. Madi saw firsthand that no one will sneak up on her and hurt her when Dutch is near. As parents, we can let her do more things without us when she is with Dutch. He has become not only her guardian angel, but her scout, her watchman, and her bodyguard. The most amazing thing about this so far is that Dutch has naturally done most of these things to this point. And now we see why Hilton and Christine chose the Bouvier for Madi. Everything they predicted in him has come true and gone so far beyond our expectations already. But he is really just beginning. We hope that Dutch can help Madi make it through the park to her grandmother’s house next year, and eventually go to places where there are crowds so that he can help guide her if necessary. We hope that Dutch can pave the way for other faceblind families to know that there is help through service dogs.”
Dutch is now 3 years old and he has some big tasks to perform. The plans for Dutch include training him to recognize the people that Madison knows and to provide a reliable way to be certain that they are known to her. He will also be able to help her find her way back home or back to her parents or friends should she be separated from them when attending a gathering where scores of people are present – a sea of the unknown. He will also learn to pull a cart designed to help Madison with her mobility issues and get her to her grandmother’s house – just the two of them.
After contacting numerous trainers who quite naturally had never heard of Madison’s condition and therefore did not know where to start training a service dog to assist with this condition, Madison’s mom happened to find Hilton Butler on the internet. She did not realize that she had stumbled on one of the top professional training teams in the country. Madison’s mom contacted Christine Butler who listened attentively as she explained the condition and the intense struggle for Madison to achieve a somewhat normal life. Christine brought this huge task to Hilton and the rest of the Hilton Butler, Inc. team and everyone agreed that they needed to help this little girl – they were not sure how but knew that they had to try. After 6 months of searching, Hilton and Christine found what they believed was the perfect dog. Through the guidance of a wonderful breeder, Lynn Vellios of Bajoron Kennels, Dutch was chosen to begin his journey as Madison’s service dog. After 2 months of his initial training, Dutch was introduced to Madison in March of 2012. It was this venture that led Hilton and Christine to create The Butler Family Foundation to research, train and educate on the development of service dogs in areas that they have not been utilized and to further develop service dogs in areas that are currently being used.