A Super Hero in Our Community: Author, Artist and Autism Advocate Haley Moss
By Kristan Bond
The Autism Society has been celebrating National Autism Awareness Month since the 1970s and recognizes the month of April as an opportunity to educate the public about this complex developmental disability that affects a person’s communication and interaction with others. But for people with autism and their families, the support needed surpasses a month of recognition and expands to a lifetime of care, funding and research. Autism affects 1 in 110 children in the United States, occurring at a higher rate in boys (1 in 70). It’s considered a “spectrum” disorder (ASD), affecting each individual differently, with symptoms that can range from mild to serious. And it is a disorder people without personal exposure to seldom even understand.
While there is no cure, there are treatments that can help reduce symptoms and maximize learning. And right here in our own backyard there are children, amazing children, who are overcoming the obstacles autism has put in their path, and are using their experiences to raise awareness and help others.
Haley Moss of Parkland is one of those amazing kids. Diagnosed with autism at age 3, this now 16-year-old is a straight-A student, a seriously talented artist (view her artwork at www.haleymossart.com), and author of “Middle School: The Stuff Nobody Tells You About.” Toss out what you know of autism, this child is beyond inspirational.
Quite the celebrity, having been featured on CNN, WXEL-TV, WSFL 39 and in numerous publications, Haley was recently honored as the 2011 “Wings of the Future” award recipient at the WXEL Garnet Society’s 8th Annual “Women with Wings and Wisdom” luncheon March 15 at the Mar-a-Lago Club, where she donated a piece of artwork to be auctioned off at the event. Her schedule is jam-packed the next few months between making appearances, receiving awards and creating artwork for upcoming events. Attendees of the Oasis at MAAP’s Art Across the Spectrum Art and Wine Auction April 10 at Mattison’s Riverside in Bradenton, FL can look forward to meeting Haley at the event. She won the Council for Exceptional Children (CEC)’s Yes I Can! Award for the arts and will be honored at a special awards ceremony April 27 in Maryland as part of the CEC 2011 Convention & Expo. And she’s doing all the artwork for the Samsung Hope for Children event in New York City June 7. Haley also became involved with Making Autistic Strides, a non-profit, parent-run South Florida organization dedicated to raising autism awareness across the nation. Haley was on hand at the organization’s Charitable Afternoon in Style fundraiser signing copies of her book, and 20% of all purchases went to the local non-profit Autism Awareness Organization. Parkland resident and VP of the organization, Diane Scharf, and her husband, Dr. Neil Scharf of Parkland Chiropractic & Healing Center, whose son is autistic, are tireless advocates for Autism Awareness, as well as children and schools in general. As you may know, Dr. Scharf works with world class athletes, and together they are doing their share to bring awareness to the public as well. Dr. Scharf’s patient, professional boxer Joel Julio, will represent Autism Awareness by wearing the autism puzzle piece on his attire during Friday Night Fights on ESPN May 20 (check out Dr. Scharf’s ad page 83!).
Diane, along with the help and kindness of the dedicated parents, teachers, officials from Broward’s ESE Dept., Principal Francine Renguso and students made their dream of getting a Pre-K Indoor Activity Center at Park Trails Elementary a reality last year. The activity center allows children to use playtime as an aid in gaining social skills so that the child can better acclimate and perform well academically in a classroom setting. And through Making Autistic Strides you can find many ways to get involved and help this wonderful organization throughout the year. Visit www.makingautisticstrides.com to learn more.
So how does anyone, let alone a 16-year-old, handle such a demanding schedule? “I’m happy to be involved and I love to be on the go,” Haley said. “I just have to take it one day at a time, because if I look at the big picture I will get overwhelmed!”
Haley is proof of the importance of early diagnosis and treatment. Her parents started her on speech therapy and hippotherapy (a treatment strategy that uses the movement of horses in physical, occupational and speech-language therapy sessions for people living with disabilities) after her diagnosis which helped her overcome many challenges early on. Her parents also provided therapy through play, using repetition to help Haley understand things that may come more naturally to other children. Haley’s mom Sherry feels fortunate that she was a stay-at-home mom and could dedicate the time needed to her only child’s therapy which has had a significant impact on Haley’s life. “A lot of parents are in denial when their child is diagnosed; they don’t want to give their child a label,” Sherry said. “But denying the issue is denying their child a better future. Working to get results is a 24 hour, 7 day a week job. It requires so much time that not all parents can give between jobs and the needs of their other children. I just feel so fortunate that we could.”
Haley’s autism is in the high-functioning spectrum, and like other children with ASD, she’s faced with social symptoms that affect the way she interacts with peers. Children with ASD may find little meaning in the gestures and facial expressions of others, such as a smile or a wink. According to the website, highfunctioningautism.com: “…children with high functioning autism are usually average or above average in intelligence. They are usually passionate about one or two specific topics, don’t like ‘small talk’ and often have a hard time organizing time, managing conflict and don’t do well with crowds, such as the mall.” Haley admits her challenges are with making small talk, recognizing sarcasm and relating to her classmate’s interests that she herself knows nothing about or may not be interested in herself.
But on the flip side, there are things that come more easily for Haley that other children may struggle with. Her ability to memorize things faster has helped her in school and to achieve high grades, she’s good with computers, appears fearless with public speaking and just seems so excited to talk about everything she has on her plate. You can’t help but fall in love with her bubbly personality and can-do attitude. But it’s the difficulties she’s faced interacting with her peers that inspired her to write “Middle School: The Stuff Nobody Tells You About.” The stories and tips in the book not only apply to kids with autism spectrum disorders but actually to anyone in middle school, and also provides insight into the challenges that autistic children face in a social setting that all children and families should be aware of to help them better understand an autistic child’s behavior. In that respect, Sherry remembers how very different it was 13 years ago when Haley was diagnosed. “Back then no one knew what it was,” she remembers. “Some people thought it was contagious which made it difficult for us to talk about. But now it’s like the stigma is gone and more people are aware of it.”
From early on, Haley’s parents have stressed the positives of her diagnosis to her, comparing her to a super hero with special powers.
And with all the work she’s doing to raise awareness of ASD, she’s well on her way to being a hero in the eyes of so many.
Cloudy with a Chance of Sobbing
By Ferren L. Korr
As I type this, Griffin, peeks over my shoulder with an ear-to-ear grin plastered on his freckled face.
As he contorts his neck to get a better look, he excitedly asks me if I am writing about him. Actually I am writing about the power of acceptance.
Griffin, my 12-year-old son, is autistic. I could sugar coat it by saying he is merely developmentally challenged or gifted. But the truth is, no matter what label we use, Griffin is significantly disabled by this perplexing disorder. Autism is a huge part of our lives.
Through his toothy smile, Griffin says, “Daddy. I dream last night!”
This gets my attention. It wasn’t until recently that we even knew if Griffin dreamed.
Of course we suspected it. However, he never told us he did. It was still a rarity for him to talk about it. So I press the subject by nonchalantly asking, “Oh yeah? What did you dream about last night?”
Without hesitation he blurts, “Last night I dreamed Barney was at the Weather Channel talking about severe weather alerts in the Northeast! Do you believe that?!?”
Yes I do. It may be odd that my son dreams about an imaginary, purple dinosaur broadcasting storm alerts. But this is my life.
In spite of the fact that it is not always easy, life with Griffin is, humorously bizarre. We believe the only way to approach it is to kick back and enjoy the show.
Griffin loves elevators and the Weather Channel. He has embraced these simple pleasures with the same passion some kids reserve for their favorite sports teams.
Griffin’s infatuation with the weather started after Hurricane Wilma blew through Florida. His fear of thunderstorms has been incredible ever since. Desperate for anything to ease his anxiety, we thought if he could see weather reports and know what’s coming, his angst would be somewhat allayed. So we introduced him to The Weather Channel. It wasn’t long before Griffin became a weather junkie.
While being constantly tuned into the weather has done nothing for his trepidation of thunderstorms, it did give him something to talk to his family about. Obsessively.
During one recent squall, Griffin hunkered down in the closet and sobbed about how much he wanted to be a storm chaser. When his mom calmly explained that storm chasers don’t hide in the closet when it drizzles, he nearly vomited. Since crying so hard you puke, is not what the Weather Channel is looking for in its on air personalities, our plan for Griffin becoming the next Al Roker is a long shot.
In a way, being told your child is disabled is a death. A death of what you had planned for your life. Griffin has taught us that getting too attached to having things go as you planned, is a recipe for disappointment. By accepting that we have little control over our futures, we spend more time living in, and enjoying, the present. Even when it rains.
Breaking Down the Barriers: Parkland Girl Works to Bring Boundless Playground to Coral Springs
Seventeen-year-old Sarah Ramos of Parkland is determined to change the world, starting right here in Coral Springs, by getting a Boundless Playground built in the city. Sarah, a junior at Marjory Stoneman Douglas High School, has a form of high functioning autism known as PDD-NOS. Inspired by her friend Matt who is wheelchair bound and can’t visit parks that aren’t wheelchair accessible, Sarah met with CS city officials last year and they agreed to designate Sherwood Forest Park as the site for an all-inclusive playground. Not only will the playground be wheelchair and autism friendly, but will meet the needs of people of all mental and physical abilities of any age.
But of course, a project like this requires funding and the Ramos family, led by the very determined Sarah, is working hard to reach the goal. The Rotary Club of Coral Springs and Parkland has agreed to collect the funds for the non-profit venture to build the playground which will allow all donations to be tax deductible. Checks can be made payable to Parkland-Coral Springs Rotary Club and mailed to: Boundless Playground C/O Dr. Aronson-Ramos, 5350 West Hillsboro Blvd #207, Coconut Creek, FL 33073.