ReDefined: 2012 Miss Montana Alexis Wineman raises awareness throughout the country
Super parents Katy McLean’s Inspiring Story
paws 4 autism
on the cover: ReDefined, Page 12
Alexis Wineman and her twin sister, Amanda, pose for Spectrum Magazine before their interview where they share the trials, triumphs, and overall growth they’ve both encountered since Alexis’ diagnosis. (Left: Amanda Right: Alexis)
PG 6:
Education: Simulation- see how William Woods University is educating students about autism
PG 10:
PG 16: PG 19: PG 20:
2
A shelter in The storm- A personal account of a journey through a sheltered workshop in mid-missouri
spectrum awareness in public servants- a look at raising autism awareness in the community Changing lives, one day at a time- Dr. cristina nergon gives us insight about her job as an education specialist
paws 4 autism- how one family was inspired by their daughter to help provide service dogs
PG 24:
Wings & Hooves- how one family is changing lives through equine therapy
PG 27:
super parents- this month’s inspiring story of a mother’s journey through diagnosis & heartbreak spectrum | april 2014
Spectrum Magazine EXECUTIVE DIRECTOR: Aimee Sapp ADVERTISING DIRECTOR: Haley Hinze ASSOCIATE PUBLISHER: Bailey Campanini CINEMATOGRAPHER DIRECTOR: Lincoln Purvis COMMUNICATION DIRECTOR: Katy Carron CREATIVE DIRECTOR: Shay Jasper CREATIVE SERVICES DIRECTOR: Carson Boehm EVENT COORDINATOR: Darian Lightfoot FIELD INTERVIEWER: Ale Martinez FINANCE DIRECTOR: Amy Gibson INTEGRATED SALES DIRECTOR: Alix Fiorino MARKETING CONSULTANT: Alicia Delaney MARKETING COORDINATOR: Julianne Rafferty RESEARCH DIRECTOR: Mary Raines Scriber SENIOR DESIGN COORDINATOR: Jamie Lanagan SENIOR PHOTOGRAPHER: Rebekah Savage SOCIAL MEDIA COORDINATOR: Heidi Willenbrink
A Special Thanks To:
Don Woodson, CLU State Farm Insurance, Lucky’s Market, CrossFit COMO, Purvis Family, Rafferty Family, Campanini Family, Beks Restaurant- Fulton, Lulu’s Frozen Yogurt- Fulton, Well Read Books- Fulton, Smockinbird’s Unique Gifts and Accessories- Fulton, Tryathletics, The Thompson Center, Venita Mitchell, William Woods University Arts and Humanities Department, Alexis and Amanda Wineman, Stephens Lake Park coordinators, Paige Stewart, Travis Tamerius, Project 123, and to our friends, family, and volunteers who helped make this happen.
spectrum | april 2014
3
Providing Insurance and Financial Services to Fulton, MO Don Woodson, State Farm Insurance Agent 517 Nichols St. Fulton, MO 65251 • (573) 642-7777 • www.statefarm.com
letter from the Editor There were words on the board in front of the classroom. Among them: student debt, poverty, and childhood obesity. Each one was crossed off, as if we were looking for something that would really test our knowledge gained at William Woods University. There were reasons why one social issue wasn’t quite challenging enough. Others, the more sensitive ones, created an overwhelming feeling. One of those was autism, boldly written in purple marker. After two class periods, it had been decided that this was “our baby”. For the next 16 weeks, we wouldn’t be thinking of too much else. How could we raise our self-awareness, community recognition and money for the organization of our choice as professionally and as enthusiastic as possible? We knew we had a lot of work to do, but we had no idea that the one word on the dry-erase board left without a strike would better our college experience, and for most, the way we looked at life. Spectrum attempts to provide insight on our last semester as classmates, working hard towards one common goal—Autism Awareness. This issue pays attention to the daily battles of those facing autism. It calls for change and it calls for action to its readers. It explores not only the people that are actively trying to spread awareness, but also the animals that dedicate their lives as therapy horses or service dogs. It explores the superhero parents who dedicate their lives to their
children on the spectrum, and acknowledges the fact that, “Once you’ve met a person with autism, you’ve met one person with autism.” These sixteen weeks have gone by in a whirlwind of interviews, sales pitches, bunny suit rentals, and our group of seniors coming together as a resilient team to make this happen. We’d be lying if we said we have enjoyed every second, but we’d also be lying if we didn’t say we couldn’t be more proud of ourselves and what we have accomplished this semester. We love Spectrum and we hope you will too.
- The Senior Seminar Team
Education: Simulations Students at WWU Experience Simulations that help them better understand the effects of autism on the seven senses.
It is human nature to learn from our experiences. Most of us value aspects of our lives that we find important, but often those things are momentarily forgotten. We refer to this as something being taken for granted. Several times in a person’s life, they undergo something that opens their eyes to their own abilities and even the simplest functions of the body are appreciated. This was the case for many students of William Woods University last Tuesday evening. A simulation event was held by the Communications Senior Seminar class in Anderson Arena, in which participants went through a series of scenarios that lowered or
6
Shay Jasper
heightened their sensory abilities. These hypo versus hyper trials gave those who joined in a perspective of small aspects of what it’s like to be on the spectrum. Although it’s impossible to recreate the typical daily battles of individuals with autism, it was incredibly important to create opportunities for students to recognize the importance of being aware of these sensory variances on the Autism spectrum. The students who participated provided written feedback. All of the comments were positive and it was clear that the event was informative and eye opening. “My favorite aspect was the balance station to
spectrum | april 2014
simulate the hyper sensitivity to balance. My little cousin is autistic and he always does a rocking motion. I never understood that this could be a possible reason!” said Victoria Berlin, a junior at The Woods. When asked what she had known about autism before the event, Paige Stewart, a junior, answered, “Not this much! I only experienced Special Olympics at my school a few times. I knew there might be some motor problems.” The most memorable sensory simulation for Mallory DeVoll was balance. “It would be so difficult, having to move like that everyday,” She relayed her experiences with distant cousins and family friends with Autism, but she concluded that the event was the most informative she had attended this year at Wiliam Woods.
understand autism a lot more,” explained Lauren Yelton. Throughout the event, members of the Senior Seminar class were seen interacting with the participants in a casual atmosphere, while explaining their particular station.“It’s important that we have a great time, but that we are knowledgeable on what we are educating others on. Everyone had an enlightening experience, but the essential part was that everyone was filled in on our mission of Autism awareness,” explained Lincoln Purvis, the senior film producer. That is the entire goal of Senior Seminar 2014, that the audience become educated about the effects of Autism and that they know the impact of acceptance.
“My favorite aspect was the balance station to simulate the hyper sensitivity to balance. My little cousin is autistic and he always does a rocking motion. I never understood that this could be a possible reason!”
Among the other simulations, heightened sound stimulation was at the top of the list of the most surprising reactions. “The most memorable sense was sound because it fully engulfed me in the sensory impairment. This event helped me to
Bottom Left: Eilie Cole and Maggie Edmondson try to balance without using their legs and throw a bean sack into a hole at the Balance Station Bottom Right: Alix Fiorino explains the Body Awareness station to a student.
spectrum | april 2014
7
run for awareness
William Woods University Communications Senior Seminar proudly supports the Thompson Center
A personal account of a journey through a sheltered workshop Bailey Campanini
M
aybe you’re familiar with the difficulties and prejudices individuals with developmental disabilities face in the workforce, and maybe you aren’t. Maybe you’re like me and, though you knew there was a sheltered workshop just five minutes away from your home, you never really gave it a second thought—not until your senior class project gave you a reason to do so. A few weeks ago, two of my classmates and I were fortunate enough to receive a personal tour of Lake Area Industries (LAI) in Camdenton, Missouri from the current executive director, Tiffany Riemann. Almost immediately after starting our tour, we were approached by one of the employees, a charming young woman who was all smiles. “Tiffany’s the boss!” she announced excitedly. “I like my boss, because she’s awesome!” Her cheerful demeanor set the tone for the rest of the tour—we couldn’t travel fifteen feet without someone rushing up to say hello to Tiffany and show off their work to her. I loved watching her interact with each of her employees; regardless of their mental or developmental disability, she treated each one with equal and genuine respect and appreciation. They all responded in kind—the love and respect the workers had for Tiffany was palpable everywhere we went. LAI is unique in that they offer a wide variety of services. Sheltered workshops commonly offer recycling or packaging assembly work,
10
but Lake Area Industries also offers paper shredding (which includes visiting the businesses directly to pick up the discarded paper), a greenhouse and garden center, and a woodshop. Tiffany explained that having so many different options enables them to adapt a job to each individual’s disability. She paused the tour and addressed me directly, “Now, Bailey, you might be experienced in marketing or theatre… Would you go apply for a job running a bulldozer? You wouldn’t, would you? I shook my head. “Why would you expect them to come into a place and do something that they don’t want to do or don’t have the ability to do?” Tiffany went on, “It’s really our responsibility to give them job opportunities not only where they can be as productive as they can possibly be, but also where they enjoy coming to work every day. It’s not about the job and the paycheck here; it’s about their friendships, their lives, and the atmosphere.” The greenhouse and garden center is Tiffany’s personal pride and joy; she suggested building it when she first joined LAI as their sales and marketing director. This unique addition to the workshop has provided wonderful exposure to the company and has given the employees opportunities for retail experience and to interact with the public. In the greenhouse, Tiffany introduced us to a talkative woman named Lena. “She never said a word while
spectrum | april 2014
she was working in the assembly line,” Tiffany remarked, “but as soon as she put that apron on in the garden center, she completely bloomed.” Lena greets every customer with a smile and a cheerful, “I’m Lena! Welcome to the garden center.” She took a few minutes away from planting to tell my classmates and me a little bit about all the work they do in the garden center, finally concluding with a simple yet admirable comment: “It’s not about the paycheck for me.” Tiffany smiled. “The paycheck is nice, though!” Lena responded instantly, as though she’d barely considered Tiffany’s contribution. “But I’d rather do it for the customers.” As we turned to exit the greenhouse, a middleaged man who had been steadily filling plant trays with new dirt turned and smiled pleasantly at us. “Come back and see us again!” he encouraged.
I remember being amazed by the energy that emanated from everyone in the building. People were ecstatic to be there—ecstatic to be doing work that benefitted their community. When I commented on this, Tiffany nodded her head. “This is more than a job to them; they feel this is where they belong. A lot of the employees get mad when we don’t work Fridays—we have to tell our employees to take a vacation.” Why is that? Why do developmentally “normal” people have to drag themselves out of bed and knock back several cups of coffee every morning as they desperately try to make it to Friday, while people with developmental disabilities—the ones who often have the hardest time finding employment—are so excited to go to work that they jump out of bed before their alarms even go off? Tiffany commented that there were hundreds of people on a waitlist to come to work at LAI as soon as there are any openings. There are ninety sheltered workshops in Missouri, but that supply obviously does not meet the demand. At the time of our tour, Tiffany said that the current government grants they relied on to fund their operation were in flux, and that LAI was at the risk of losing some of its financial support—a loss that could prove devastating. I do not know yet how that will turn out, but I do know that the thought of denying those beautiful individuals that which they look forward to the most breaks my heart.
“It’s really our responsibility to give them job opportunities not only where they can be as productive as they can possibly be, but also where they enjoy coming to work every day. It’s not about the job and the paycheck here; it’s about their friendships, their lives, and the atmosphere.”
Throughout the entire workshop, individuals worked away at their stations. Whereas most people would probably take a quick break from their work to chat with the boss or the visitors as they came by, Tiffany’s presence never fazed her employees. They all remained intent on their work, proudly planting tiny seedlings into fresh soil or putting ten packets of Cool Off (a product similar to Kool-Aid) into each little plastic bag.
After concluding the formal tour, Tiffany took a moment to brag about her employees. “I would put our quality up against anyone’s,” she said. “These guys work harder and they’re more cautious about it… We might expect them to miss things, but they don’t.” She paused for a moment, then added, “They really care about and are very prideful of what they’re doing, even if it’s bagging. You and I might get bored bagging, but they love it. It’s what they do. They have business cards that they’ll take out into the public and say, ‘I work for LAI!’”
So, maybe you had heard of sheltered workshops before reading this, and maybe you hadn’t. Perhaps this article reminded you of a place you had heard or read about once. Or maybe, this article helped you gain some understanding and appreciation for individuals who might be less fortunate than you or me, but who can nevertheless provide wonderful contributions to our community. Ultimately, I hope that reading this provided you with a glimpse into an entirely new world, filled with possibilities and hope for the future.
spectrum | april 2014
11
Redefined Katy Carron
Alexis Wineman's spectrum story and how she is spreading awareness across the country “Retarded” is a word Alexis Wineman, 20, is all too familiar with. It has been the word that her peers have bullied her with since she was a little girl. At age eleven, Wineman was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified (PDD) and Asperger, putting her on the mild end of the Autism spectrum. Now, Alexis has overcome the stigmas of her disorder to be crowned 2012 Miss Montana and win the people’s choice award in the 2013 Miss America pageant. However, this road to victory was not without its challenges. From a very early age the Wineman family knew their twin daughters, Alexis and Amanda, were different. Amanda hit all of her developmental milestones ahead of the curve; she exceeded academically while Alexis started to fall short. Amanda even started to notice differences as early as preschool. “It was very hard to understand why she didn’t want to reach the milestones,” Amanda Wineman said. “It was frustrating because I knew she could do everything.” Amanda exerted herself to bring Alexis to her level. “I would try and force her there. Usually it resulted in her melting
down, but I just wanted to have my sister with me at preschool,” Amanda said. Alexis noticed a difference too-when she started public school. “From the moment I started school, I knew things were different,” Alexis said. “They were doing things I didn’t understand: saying things, making jokes. I wanted to communicate with my peers but I couldn’t.” Bullying only made Alexis’s school life harder; she was ridiculed daily for her speech impediment and personality. “I didn’t want to be different,” Alexis said. “So I took all the bullying because I thought I deserved it, I thought this was my punishment for being different so I took it.” Amanda underwent equal bullying for having the “retarded sister.” “It started when I jumped grades and I couldn’t focus a lot of my attention on her,” Amanda said. “People would try to make me upset by calling her ‘retarded’ and I would try to ignore it. My older sister always said something though.” As the bullying got worse so did Alexis’s meltdowns. “During my meltdowns I would be yelling, letting everything out, and as a result relationships at home were becoming frayed,” Alexis said. “My mom finally decided I needed someone to talk to so she set me up with meetings with our youth pastor. He was cool, but he really wasn’t trained to handle this.” Noting his inexperience with children like Alexis, the pastor recommended she see a psychologist. “I wasn’t a stupid kid. I knew exactly what would happen with the psychologist- everything I told her would be told back to my parents- so I didn’t talk much.” Alexis was misdiagnosed with depression.
“I got really scared that ‘I was sick’,” Alexis said “They gave me enough medicine to drug a horse, but I took it because I thought it was going to make me better. I just wanted to be normal.” The violent outbursts grew as the medicine began to take over Alexis’s life. “Alexis would try to commit suicide on multiple occasions,” Amanda said. “They wouldn’t at all be successful but to her they would be.” Blackouts were common for Alexis during this time, who doesn’t recall much of these events. “I became the holder of everything Alexis tried to harm herself with,” Amanda said. “Belts, scarfs, knifes would all go under my bed and Alexis had no idea.” This was a big task for the sister who had only just turned ten-years-old. “My relationship with Alexis was completely lost around her depression stage,” Amanda said. “There was so much anger there towards her. Every time she would have a meltdown, I would too. I never regretted what I did for her, but for a long time it was a family struggle.” Eventually Alexis switched doctors. The new doctor diagnosed her with PDD and Asperger’s at age eleven. For Alexis this still felt like eleven years too late. “I didn’t feel relieved, I felt hopeless and irritated. It was like starting over form square one,” Alexis said. Doctors provided medications and studies for Alexis, but after the bout with depression the family was skeptical to trust them. Instead the family started pushing her out of her comfort zone. “I got involved in cross country in middle school because of my brother; he is my hero,” Alexis said. “I liked it because I was only competing with myself. I didn’t have friends on the team and I didn’t fit in, but I just wanted to spend time with him.” Alexis also took up speech and cheerleading in school to venture further out of her comfort zone. “Amanda got me into the speech and debate team because of the miming portion.It was perfect for me because you didn’t have to speak during the competition. But between rounds you would be hanging out with everyone and it forced me to speak. I noticed that the mime group was a little bit like weirdoes and misfits and that gave me hope for friends.” Alexis and Amanda reconnected with speech after a particularly personal speech Amanda’s view on Autism. “I remember I got up on stage and said, ‘this topic is so important to me because I have a sister with autism’ and I looked out into the crowd and saw Alexis and just started bawling.” The speech proved to be a turning point for the sisters as they rekindled their relationship. From there Alexis’s life
14
spectrum | april 2014
was progressing positively forward and soon it was graduation.
Alexis immediately got to work for the Miss America pageant.
“The biggest day of my life was graduation day,” Alexis said. “For the longest time it was something that wasn’t attainable, something I couldn’t do. It was the best feeling to graduate high school with friends.”
“You could tell an immediate change with her. She was trying to pronounce words more clearly and was looking people in the eye. It was big step for her,” Amanda said.
Another hurdle now faced Alexis: how to pay for college.
Alexis was now on the road to Miss America with multitudes of support.
“I remember I went to my mom and I was like what are my scholarship options for college and she printed me off the entire list and at the very bottom there was Miss Montana. I think I surprised everyone when I decided to do the pageant, but I thought it would be fun,” Alexis said.
“We would have viewing parties at my college,” Amanda said. “Everyone was interested in Alexis’s story.”
Registering just two weeks out from the pageant, Alexis was the underdog.
“I remember the camera panning to my family when I won and they were all going wild, then it moved to this lady who was whooping and hollering for me,” Alexis said. “It was funny because the camera thought she was my family but she was just someone who just supported
“I borrowed a bikini from my sister and wore a prom dress off the hanger. I really didn’t think I would win the
Alexis’s background catapulted her to the limelight as she was voted the People’s Choice Award, automatically putting her in the top 16.
"Autism Doesn't define me. I define autism." pageant, the scholarship for just participating was motivation enough,” Alexis said.
my story. For me that was so awesome to know my family wasn’t alone.”
Going through the pageant, Alexis fell in love with it.
Alexis’s Miss America journey ended shortly thereafter but her work with her platform never stopped. Alexis now travels the country speaking at multiple events to spread awareness for autism, and attends college with her sister.
“All my years of speech and theater made this pageant a lot of fun, I thought to myself this is something I would really like to come back and do again.” Alexis was not able to return to the pageant for another year because at only eighteen-years-old she was named Miss Montana 2012 and was Miss America bound. “A lot of people looked at me differently after being crowned,” Alexis said. “I was no longer my siblings’ little sister but I was now an individual.”
“I can preach as much as I want about autism, but I say as long as one person is impacted by my story, I can drop my advocacy platform right there because it’s been a success,” Alexis said.
Amanda and Alexis goof off during their photo shoot. spectrum | april 2014
15
Shay Jasper
F
or several years, legislators have been working to move the law into an age of awareness and tolerance for Autism. To many, it isn’t something that should be “dealt” with. It’s simply something that people should be educated about. This especially includes those in the business of public service. Denial of services has gained media attention in the last ten years. Recently, a young boy was denied a haircut in Richland, TN because of his severity on the spectrum. A set of twins was denied access to a public school bus for transportation to and from their education after the bus driver declared he didn’t want to have to deal with any outbursts from one of the girls with Autism. Just last year, a boy on the spectrum was humiliated in front of his classmates when he got stuck in a chair. Instead of his teacher helping him out, she recorded the incident on her smartphone’s camera. “In the case of people singling out individuals with Autism, it is especially necessary when they are in need of protection. This safety includes rights to public services—same as anyone else,” claims Dr. Barbra Anderson, a pediatrician. Anderson is trained to specifically deal with the general practice of individuals with Autism. She, like many others who service specifically to individuals on the spectrum, agrees that it is especially important to become aware of all behaviors and abilities in order to safely and sufficiently provide services to the public. “Individuals on the spectrum are a part of the public. It shouldn’t take legislation to realize that, but it’s definitely the case,” states Anderson. It took several years for lawmakers to realize individuals with Autism, as well as their families, need representation in school systems. Individualized education plans, or IEPs, that tailor to the specific needs of the individuals, were developed and required, and the legislation was recognized as crucial for the public school system. Even though so many steps have been made, many more are necessary. This isn’t only true for the educational aspect of individuals with autism, but especially necessary for social and public safety, as well. Kelley Foust, father of 17-year-old Noah, who lives with severe Autism, tells a story of his first experience with a police officer at his door. It had been a misunderstanding with the school bus driver. He and his wife, Cathy weren’t home at the time and Noah was
16
supposed to be taken to a different destination after school. Their home was equipped with an alarm system and Noah found his way into the house, unable to hear the silent alarm. After the police were notified, they rushed to the scene to find Noah in the home. “My terror was knowing that there was a burglary alarm and a 170-pound-Noah standing at the top of the stairs that wouldn’t respond to an officer, or worse—run from them. That concern is something that I still have. Many do, and it’s growing.” The officer was notified of a resident with autism in the home after radioing in suspicious activity in the home. Kelly had notified police as soon as he was contacted by the home alarm company. “We’ve gone to police stations and fire stations, in hopes to make them aware, so that they would know how to deal with Noah if a bad situation ever arose,” said Foust. “That’s our biggest concern, at this point.” “The best things parents can do is have an understanding of police response,” says John Worden, Director of University of Missouri’s Law Enforcement Training Institute. He explains that parents should contact local law enforcement in their area because the response may be different depending on the jurisdiction and introducing children to law enforcement officials is the best way to make them familiar. Worden is one of the many instructors in the law enforcement training program, but admits, “there is not much law enforcement training specifically designed to address Autism.” When it comes to public safety, parents are stepping up to demand legislation be passed for certain requirements in training. Autism, as a spectrum disorder, is difficult to categorize as an aspect to be fully familiar with in the field, but it is proposed Crisis Intervention Teams and specialty seminars that are only slightly changing the game. Among mental illnesses, disease or deficiency training, currently only a small portion of the required 40 hours of training for the program addresses the spectrum. Most of this training isn’t a requirement at all. The same circumstance lies for many other pubic servant workers, like dentists and physicians. Dr. Ronald Massie, D.D.S., says, “Every dental student has a semester of dealing with medically compromised, special needs patients, both adults and children, but when I went to school, there weren’t any recognized
spectrum | april 2014
specialties for special needs dentistry or geriatric dentistry. They were lumped in together.” Dr. Massie completed most of his training at a children’s mercy hospital in the operating room, working mainly with special needs children that required anesthesia. He also tells the story of his childhood and his familiarity with special needs children. “My best friend for the first 16 years of my life was a young man with a cognitive disability.” This isn’t the case for most dentists—many don’t have much experience in working with developmental incapacities, behavioral issues or most impairments. There is a recognized specialty in geriatric dentistry (American Dental Certification), but there is not one for special needs people. Massie thinks there won’t ever be one because it is such a specialized area. “I am ashamed to say that a lot of these special needs people are neglected. It’s wrong, but it’s not a high priority.” However, he explains that every practitioner— dentist, psychologist physical therapist—all must spend some time around them to understand their frustrations, personalities and to gain a perspective of their sensory overloads. In order to prepare for his appointments with individuals with Autism, Massie finds out what stimulates them and what doesn’t.
“We need to find out from the parents what they like and dislike. We have to do a lot more interactive diagnoses than with a non-special needs person in order to meet the objectives. We have to feel confident that we can treat them in the practice.” Massie says that any good dentist would contact the patient’s general physician to pull together a lot more information. Overall, the need to recognize the importance of specific training is crucial in order for every child on the spectrum to receive the best possible treatment. It’s been a long road for individuals with autism and their families when it comes to seeking support from lawmakers. In the last decade, policymakers have called to address reform and legislation in regards to autism insurance, financial aid and many social advocacy concerns. It seems that much of the weight has been lifted off of the families and onto advocacy organizations. Autism Speaks works with many legislators to ease the access to care and to raise the voice for individuals on the spectrum. Many steps have been made, but it will take many more for these groups, parents and public servants to reach the entire goal of Autism awareness.
Lucky’s Market Giving Program is proud to support Spectrum Magazine and William Woods University Senior Seminar in their efforts to solve the Autism puzzle one piece at a time.
CHANGING LIVES, ONE DAY AT A TIME From traveling to different schools to teaching kids in all areas of the spectrum, Dr. Cristina Negron does it all.... Alix Fiorino
F
or nearly a decade and a half Cristina Negron has had the chance to change the life of children, parents, and teachers within the Broward County school district. She says the best part of her job is the fact that she knows that every day, she will make a difference in a person’s life. Cristina Negron is a Behavior Program Specialist with the Exceptional Student Education Office in Broward County, Florida. She has been with the program for the past 14 years. She serves 22 schools and assists in classes for individuals with autism. She also works with children who are emotionally handicapped, intellectually handicapped, or have other behavior difficulties. Her job varies day to day. When traveling to different schools, she meets with students and does everything she can to help them succeed. “I try to find out why students do what they do, then teach more efficient ways of conveying what they are trying to communicate.” She admits that it is a challenge. “The most difficult part is changing people’s perceptions regarding disabilities.” She adds that when working with individuals with Autism, it can be difficult for adults to understand that their behavior is not meant to be disrespectful. Negron’s belief is that these children “are attempting to communicate their frustration with a world that they do not fully understand.” High school is a notoriously harsh environment for any student, but Negron told Spectrum about an
incident where she was blown away from the kindness that she witnessed while on one of her school visitations. She was working with a 9th-grader with Autism who was nonverbal and did not feel any need to interact with his peers. In this particular instance, all of the students had to sit in the auditorium for a free period. Negron sat with her student so he would not be alone, but it was clear to Negron that her student wanted to be with his peers. Suddenly, one of the other students walked over and asked him if he wanted to join the group. “The smile on this student’s face is something I will never forget,” Negron said. “He was so excited to be included and acknowledged!”
“The smile on this student’s face is something I will never forget”
Negron’s final comments were both passionate and kind. “I think it is important to understand why people do what they do before judging them,” she told Spectrum. She added that she believes people should adhere to this policy when dealing with all kinds of individuals, not just those with disabilities. “We are too quick to judge and end up misunderstanding others.” Taking the time to fully understand those around us will serve to better our community and make a difference the lives of those around us.
spectrum | april 2014
19
Components of Autism Depression Broadly ranging intelligence levels
Neuro relationship between ADD, OCD, ADHD, dyslexia and similar disorders
Poorly formed theory of mind
Sensory processing disorders
Genetic component
Disordered physical development
Commonly occurs with co-morbidities
Unique neuro chemistry
Executive disfunction Disorderedcognitive cognitive Disordered development development
Poor fine motor skills
Cognitive
Disordered Learning
Poor fine motor skills
Food Aversions
Social rejection and isolation
Social
Brain- Gut relationship
Sensory
Slower information processing time
Higher than average anxiety levels
Poor social awareness
Disordered speech development
Home environmental component Internal chemical and nutritional imbalances and deficencies
Internal
Food Intollerances
Compromised immune system
Remember, each person with autism is different. While one person may have a handful of these components, another person on the spectrum could have an entirely different set, making each diagnosis unique.
Environment Behavior Special interests Behavior difficulties Strong reliance on structure, rules and routines
Environmental component Rapid changes in food and lifestyle over the past 50 yrs
Increase in chemicals in our environment and food
Paws 4 Autism Rebekah Savage
In July of 2010, Terri and Ken Wible co-founded Paws
Adriana & Franklyn at their first dog walk fundraiser. based upon different needs that a person with Autism might have. “All of our dogs are custom trained for each individual’s, and their family’s needs,” said Terri.
4 Autism. Paws 4 Autism is a 501(c)(3) organization that provides service dogs and more to the community in Kansas City, Missouri and the Before a dog can officially leave Midwest. Other services include support for families, Paws 4 Autism,social skills classes and training proschools and the public to help grams are held. This ensures that integrate Autism service dogs into “Through Paws 4 Autism, the dog and his permanent owner the community. Their daughter, have already begun the bonding Adriana, was their inspiration to we are able to not only process. provide a safer environment for assist other children on children with Autism. Paws 4 Autism is solely volunteer
the spectrum, but also based. The numbers of dogs that The Wible’s adopted Adriana are placed each year vary, based give back hope to through the foster care system. upon the number of volunteers Shortly after, Adriana showed signs their parents” and the number of donations. of behavioral issues related to Autism. Despite all of the testing, Once a dog has been placed, Paws Adriana was not behind academically. Due to this, the 4 Autism continues to work with the owner and enWible’s received no services or extra support. Thus, sure that a strong bond is still in place. Importance is the need for Paws 4 Autism was born. placed upon the bond, due to the safety of the individ“My husband and I co-founded Paws 4 Autism in July 2010, while we were in the process of raising funds for our own daughter’s autism service dog,” explained Wible. “Paws 4 Autism is my passion and the WHY for all of the meltdowns, therapies, and nightmares we have been through with our children. Through Paws 4 Autism, we are able to not only assist other children on the spectrum, but also give back HOPE to their parents.” At Paws 4 Autism, each dog takes about 18-24 months of training 24 hours a day. Each dog is specialized
ual with autism.
“When out in the community, a service dog increases safety and helps families feel secure,” explained Terri. “The service dog’s calming presence can minimize and often eliminate emotional outbursts, enabling the child to more fully participate in community and family activities.” Once placed within a family, or with an individual, service dogs provide a safe environment. Through their calming presence, service dogs can change the lives of individuals and families for the better.
spectrum | april 2014
21
william woods university senior seminar 2014 proudly presents: our class’ journey through the semester - what we thought we would learn about Autism and what we actually learned about the disorder and ourselves. Autism cannot be defined, it’s
A
n o i t c u prod
Wings &
HOOVES Rebekah Savage
N
estled in the green, rolling hills of East Kingston, New Hampshire rests a sanctuary where miracles take place. Wings and Hooves, a 501(c)(3) is home to therapeutic riding lessons for both handicapped, autistic and special needs children and adults. Upon entering the gate, both children and adults seek refuge within the calm, liquid eye of the equines used in the therapeutic riding program. Wings and Hooves is owned and operated by the Cueno family. Karen Cueno, wife of Paul Cueno and mother of Kristen Cuneo, founded the program several years ago. Kristen, her daughter, struggled with a learning disability. After watching her daughter interact with horses, the idea of Wings and Hooves was born. Read along as Karen describes life at Wings and Hooves.
1. Q: HOW DID WINGS AND HOOVES START?
A: Wings and Hooves started from a thought about 19 years ago. After watching Kristen, my 4 year old daughter, take riding lessons. I watched her
24
succeed with her learning, to ride a pony one task at a time, helping her with her learning challenges and ADHD. I too realized that once I was back on a horse, I did not think about my health issues, work issues, and was simply in the “now” with the horse for the hour that I took the lesson. So the thought of healing others with the horse began. It took a while to create, but after my third kidney transplant, I decided it was time to follow my dream and to reach out to others with what I knew was therapeutic.
2. Q: WHY DID YOU WANT TO START A NON-PROFIT
THERAPEUTIC RIDING FACILITY? A: To basically help others. Our program is dedicated to enhancing the lives of individuals with physical, emotional and developmental disabilities by building confidence through equine-assisted activities and partnerships. My vision was clear: equine activities bring out the very best in people and allow them to soar to great heights while realizing their incredible potential. It is all about turning “I wish” into “I can” and helping others to fly hoof by hoof.
spectrum | april 2014
3. Q: WHEN DID YOU BECOME PROFESSIONAL
ASSOCIATION OF THERAPEUTIC HORSEMANSHIP (PATH) CERTIFIED? A: I became PATH certified in May 2009. I took classes at the University of New Hampshire in their Equine Science program and became certified there as well.
4. Q: HOW MANY HORSES DO YOU USE IN THE THERAPY
PROGRAM? A: We currently have nine therapy horses; number 10 is in training, and we also have two miniature donkeys. Jack and Daniel (the donkeys) love being groomed in our “Horse Buddies” program.
5. Q: WHEN YOU FIRST STARTED WINGS AND HOOVES,
DID YOU ANTICIPATE THAT IT WOULD GROW TO WHERE THE PROGRAM IS NOW? A: Yes. The program has reached a level where we are comfortable. I could add in many more lessons per week/session, but that would take away from my mission. For their benefit, I believe that one or two riders at a time in the arena is a maximum. We are very hands on at the cross–tie area with grooming and tacking as part of our lessons. That includes our lessons for both verbal and nonverbal riders. It is not a “glorified” pony ride. These riders learn everything related to the horse and are very in tune with their equines.
ABOVE FROM LEFT: Gem (horse), Adam, Kim Hughes, Sue Winslow, Lady (horse), Karen Cuneo, and Ethan. 6. Q: HOW MANY SESSIONS DO YOU HOLD PER YEAR?
A: We hold six sessions per year. Each session is five weeks long, with a two week break after each session. This works out well for the riders, volunteers, staff and most importantly, the equines.
7. Q: ABOUT HOW MANY STUDENTS DO YOU HAVE PER
SESSION? A: We have anywhere from 18-22 riders per session. “Horse Buddies” can be up to four students. We are hoping to bring in veterans in the near future in groups of three-four at a time for horsemanship.
8. Q: WHAT DO YOU BELIEVE THE DEFINITION OF AUTISM
IS? A: Autism affects the way a child perceives the world and makes communication and social interaction difficult. They may have repetitive behaviors or intense interests. Symptoms and their severity are different for each child in each of the affected areas: communication, social interaction, and repetitive behaviors. Although autism is usually a life-long condition, the symptoms can change over time. The long term
spectrum | april 2014
25
outcome is highly variable. Some children lose their diagnosis over time, while others remain severely affected. Many have normal cognitive skills, despite challenges in social and language abilities. Most individuals with autism develop speech and learn to communicate with others. Early intervention can make extraordinary differences in your child’s development. How your child is functioning now may be different from how he or she will function later on in life.
the cross-ties, to following directions of riding and learning tasks asked in the arena, to using their inside voices and controlling outbursts as not to scare a horse. The magic is really in the equine. They are the true therapists and we are their guides. Our program is very big on “Thank You’s” as well—thanking the horse they rode, volunteers, and learning to address volunteers and staff as Miss Karen, Miss Kim etc.
9. Q: HOW DO THE HORSES AFFECT AN AUTISTIC CHILD?
THAT STANDS OUT THE MOST? IF SO, WHAT WAS THE STORY? A: The encounter that stands out the most is a rider we had who is now one of our volunteers here at the program. She had a diagnosis of Bi-Polar/ manic depressive disorder. She rode Mr. Wise Guy, and one particular day she came in the barn, she seemed to be fine. We got into the arena and started our warm–up and lesson tasks. While going across the arena, Mr. Wise Guy just stopped and refused to move. He looked at me, and then looked back at the rider. She immediately broke down in tears and said she needed to dismount and could not continue. I learned a lot that day about the horse/human connection, and how to trust these animals and how these equines interact. Mr. Wise Guy knew before any and all of us knew that she was having a difficult time and he chose to stop. She later went into his stall and apologized and groomed him and finished her day in the way that helped and healed her best. That is what Wings and Hooves is all about.
A: Horses have a calming, relaxing affect. They do not judge behaviors and the children learn to bring behaviors down around them. Horses have a quiet concentration and demeanor about them.
10. Q: DO YOU HAVE A SPECIFIC “GO-TO” HORSE, OR
DOES IT VARY BY PUPIL? A: It varies by rider. We try to follow the IEP’s and medical history of each rider and partner them with a horse in the program that we feel would give them the most benefit. This is not only for physical conformation but for the individual’s needs. Our Fjords can carry a larger individual or a rider that needs to expand their pelvic area, and the Arabians and half-Arabians carry just about every other rider with all types of challenges.
11. Q: HOW DO PARENTS REACT, WHEN THEIR CHILD IS
WORKING WITH THE HORSES? A: Parents see many changes in their children. From getting involved in grooming and tacking at
26
12. Q: IS THERE ONE ENCOUNTER WITH A STUDENT
spectrum | april 2014
Haley Hinze
I
magine being married to your best friend. You give birth to two beautiful children, and cannot picture your life any other way. Suddenly, everything around you comes crashing down. This is the story of this month’s Super Parent, Katy McLean. McLean lives in the small town of Hico, Texas. She and her husband had followed their passions; she became a school teacher and he a Hood County Deputy Sheriff. Their lives changed when they gave birth to Quint, now 11. Born with an extremely rare neurological defect, holoprosencephaly, he was not expected to make it past his first birthday. “Quint is not functional at all on his own. I describe him as an 11 year old infant,” she said. The McLean’s were presented with another change when Abby was born. She was diagnosed with Autism Spectrum Disorder as an infant. Now at age eight, she is “very independent,” according to Katy. “I sometimes wonder if she even needs me! In school she is behind because of being non-verbal and her attention problems.” Katy and Lance worked together wonderfully with the children. She remained optimistic no matter the
situation, and relied on a Facebook support group for parents of children with Autism. The kids were well loved by everyone at the school she worked at in Bluff Dale, and Katy made the best of everything. On June 29, 2013, Katy and the children suffered the biggest loss anyone could imagine. Lance was critically injured in the line of duty and later passed away. Katy revealed that Lance was a huge part in the children’s lives and her biggest support. “It is harder to do everything on my own. We used to take turns with the kids. He would do Quint’s nightly routine (bath, meds, etc.) and I would do Abby and if I ever needed to go somewhere with just one kid, I had him to watch the other. Now it’s all on me to find the time and energy to get it all done.” Abby understood what had happened, according to Katy. “Abby had a very hard time at first. She was such a daddy’s girl. She would lay in bed and cry and scream. Now she is better and she has her times where I swear she sees him. She will do the things they used to do together or just start laughing like crazy for no reason. I don’t know if she understands but she is handling it ok now,” she said. Quint’s condition, however, most likely prevents him from comprehending the situation. “I’m not sure if he realizes anything.” The small community of Hico has reached out to the family and is helping Katy not only with the children, but making sure Lance’s memory is preserved. They have hosted several fundraisers and events in his honor. Katy’s family has also stepped in to aide with the children. “My family is great with them and everyone helps out. Some of them used to be scared of them but now everyone knows they are just like the other kids,” she said. A newly single mother of two severely disabled children, Katy is truly a Super Parent. Above: Katy and Lance cozy up at a Texas Rangers game. Before Lance’s passing, they loved going to baseball games together. Katy and the family recently attended a memorial game in honor of Lance’s birthday. Left: Quint, 11, and Abby, 8, cuddle up together. Quint’s disorder left him with only a partially developed brain, and Abby was diagnosed with ASD as an infant.
spectrum | april 2014
27
ODDS OF A YOUNG WOMAN BECOMING MISS AMERICA: 1 IN 18 MILLION