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Touched by an Angelman
by Blaise Shaw
Alex Siragosa
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Walking around the riding ring of Mountin' Hopes I could hear the sound of the old hand pump grinding slowly upward, the sound of its rusty hinges grating through the air. Alex Siragosa's head tilted to the side. He had heard it too. His tiny body started writhing on top of Little, the massive black gelding that he was astride. He knew with that sound the water had been turned on. As we turned the corner, the fluid grace was rolling down, splashing into the bucket with little dripping sounds like wind chimes. Alex focused his attention on the rolling liquids and stared as he rarely ever does.
"Alex, turn your head forward," Cara Gregory instructed from the center of the ring, her golden hair glimmering in the sun as the mid-day heat bore down. Alex was in the middle of his equine therapy lesson, but he was distracted. He continued to stare off to the side, watching as the water fell softly down, sparkling and pure. We continued at a slow and trudging pace, all praying that Alex would not do what we feared he would. I felt the muscles in his legs begin to tighten. Instinctively, I knew he was about to launch himself off the horse. He lurched forward but I caught his leg.
"No, baby, it's not time to get down yet," I whispered to him soothingly.
He turned his big, brown, puppy dog eyes down on me. I knew that he understood me, that he did know what I was saying, but he didn't understand why. All he knew was that he was hot and tired, and he saw what would relieve him most, falling and sloshing down into a dirty white bucket.
Cara gave the word that Alex could be let off the horse and he half fell, half leaped into my arms. He could barely stand on his own feet as he rushed toward the stable. The water was still falling down into the dirt-stained container. He thrust his hands under the spigot and started hauling water to his parched lips. The cool liquid ran down his chin and over his red T-shirt, but he did not seem to notice as he dived for more. He continued to do this again and again and again as if his thirst could never be quenched. And for him, perhaps it may never be.
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A proper rider
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Alex is a 15-year-old boy, brown eyed and raven-haired. Like most boys his age, he wants to be out and active, spending time with other guys. He's always smiling and laughing. Therein lies his malady. Alex can only express emotion through laughter. He can't frown, scowl, or glower at anyone. Even when he is in pain, he can only laugh in place of his tears. You see, Alex has a rare laughing disorder; one that is so rare that it is almost unheard of: Angelman's Syndrome.
In 1935 Dr. Harry Angelman, an English physician, first described three children with characteristics now known as the Angelman's Syndrome (AS). He noted that all had a stiff, jerky gait, absent speech, excessive laughter and seizures. Some of the other consistent features that have been discovered since are an attraction to water and hypersensitivity to heat, as Alex showed in the ring that day. Other cases were eventually published, but the condition was considered extremely rare, and many physicians doubted its existence. The first reports from North America appeared in the early 1980s but the syndrome is still relatively unheard of.
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Mountin' Hopes
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This is the reason why Alex is a student in an alternative physical therapy known as therapeutic riding or hippotherapy at Mountin' Hopes and has been since the beginning of the farm and throughout the span of five years. Hippotherapy is a form of physical therapy that uses the horse as a therapeutic tool. It is designed for people who, because of disabilities, have difficulty using their abdominal, trunk, and other muscles. Riding a horse helps Alex build the strength, coordination and balance he needs to sit up, move his arms and legs and even stand and walk.
A horse moves as a human does--front-to-back, side-to-side and up and down. By feeling the motion, a disabled person can learn how to move his own muscles in similar ways. Through the equine therapy and the intensive treatments that Alex has worked through, he has gained enough strength in his arms and legs to be able to tug an adult.
In addition to physical benefits, therapeutic horse riding lessons offer mental and emotional benefits as well.
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This is not to say that it has been all improvements for Alex. There have been occasions when he has relapsed into states of stupor and inactiveness. There have been occasions where his riding distresses him. He rocks back and forth in the saddle anxiously. With a sound between laughter and pain, he attempts to communicate, but no one understands. Though he can now walk he is still deprived of one of the most important abilities humans possess: speech. At most, patients of AS develop 10 to 20 words with odd pronunciations. Alex is not so fortunate. His is a severe case; he may point to body parts and indicate some of his needs by use of simple gestures, but he is much more apt to follow a command when he is able. Alex has extreme hyperactivity and usually cannot be attentive enough to achieve the first stages of communication, such as establishing sustained eye contact, not to mention speech. To Alex there is just so much to see and absorb. His eyes follow everything, enjoying every detail. For Alex, the world is filled with amazement and enchantment; his eyes devour every surface and part of you. He's fascinated by everything, by life itself.
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Cara Gregory is Alex's instructor at Mountin' Hopes. Cara has a special interest in Alex because he was one of her first students. When I went to interview Cara, she was outside weaning her new colt. "This will only take a minute, but you can go ahead and start," Cara said as she held the lead rope of a tall brown mare with its head bent down, grazing. "I'm weaning the baby," she explained at my curious look.
Facing west the sun crept up behind her, turning her spun gold hair into a halo of light but distorting the features of her face. She stood in an open posture, leaning more on her left leg, hands hanging down at her side holding the lead rope, completely relaxed.
"I guess you want to know about hippotherapy right? Well hippo comes from the Greek word meaning horse and therapy meaning, well…therapy. It's just a fancy term meaning the use of horses for therapy," she clarified. Her tone and way of breaking down the term showed a much-used patience that said she had explained this before.
She waited genially as I wrote down her words as if time meant nothing and there were no such thing as haste or hurry. She told me that Alex was one of her first students when she came to Mountin' Hopes. She had started scared and didn't know what to do.
And backwards, too
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Cara had come out as a student of Warren Wilson studying therapeutic riding. She was working on the farm as an independent study class that had been created for her. Alex was one of her first students and this was a bit of a challenge. She had never met anyone with Angelman's Syndrome and wasn't sure if she was being too harsh or too soft, or how best to help him, or what she was even supposed to do. I felt much the same way when I first encountered Alex.
She told me how she had had the support of Alex's mom when she had first begun: "She gave me a lot of positive feedback and a lot of reassurance…These parents were completely unprepared when their child was born, and a few years later they come out here as experts; they're completely comfortable and proud of their kids just like any other parents."
She stood there with the sun creeping overhead "It's amazing to me that there are healthy kids," she said as she looked out over the land. She said she finds herself energized by the children she works with and their parents. "The child's first challenge is physical survival. Then the challenge grows into emotional and social survival. It is inspirational to work with parents who are their children's greatest advocates.''
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There is no cure for Angelman's syndrome. However, the condition is not progressive, and skills slowly continue to be acquired throughout the individual's life. Since mental retardation occurs in all individuals with AS, it is imperative that Alex receive all available educational and therapeutic resources. Physical therapy (for balance and other gross motor delays) like Mountin' Hopes, occupational therapy (for fine motor and oral-motor control) which his caretaker provides, and speech therapy (for nonverbal methods of communication) are all common necessities for him. Beyond the physical forms of therapy, just like all other people, Alex needs to be loved.
Alex's time at Mountin' Hopes has increased his social skills because he interacts with the other students by waving and showing affection. He uses non-verbal communication to imply what he is seeking to his side walkers and leaders, and he has touch interaction with the horses. This contact with the horses may be the most beneficial because they communicate without words. Horses being tactile creatures respond to touch before verbal orders, so Alex can communicate with these animals better than with some people.
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One Saturday morning I went to visit Alex's mother. I was greeted with a big hug and kisses from Alex. I introduced myself to his mom, Mary MacManus, and we sat down to talk. As we talked Alex slid across the tastefully decorated living room on his cart. Most of the objects that were on tables were in corners out of the way and were made of durable materials. Everything was neat and trim. He flipped channels on the TV, amusing himself with different programs. His mother told me that he didn't really like cartoons, but programs with real people in them. He knew what we were talking about and stopped changing channels to watch Sylvester try to catch Tweety on the beach, casting a glance over his shoulder occasionally.
"He's a joy in our lives. Everyone coins the phrase "he's a blessing" but he really is…. He's taught us a lot about simple pleasures and unconditional love…patience, he's fun to be around, he's always got a smile on his face and he's so giving," Mary said.
"Everyone says it must be so hard but it isn't; he's just so wonderful…I don't think it hard at all. I can't imagine life without him. He communicates well for not having a (verbal) communication system".
Alex's mother acknowledged that there were challenges that accompanied the blessings she had received. "It's like having a toddler…things break" but "it's not so bad because he gives so much back; it's worth it." The newest challenge she faces is that Alex is growing up. At age five he weighed very little, but at fifteen he weighs quite a bit more, and there is a lot more to try to handle.
His mother decided Alex should sit with us instead of watching TV. She unplugged the TV but he decided he wanted it back on. He first tried to turn it on, then he handed her the remote. She gave in and let him watch Honey I Shrunk the Kids. When she put the movie in, he came over and sat on the couch beside me and threw his legs over me, making himself at home.
For years no one knew what was wrong with Alex. It was first thought he suffered from autism or cerebral palsy. But when he was seven, Alex was taken to Duke University where a resident there happened to pass him in the hallway and asked his mother about his symptoms. He then asked her if anyone had ever said Angelman's Syndrome to her, which she said they had not. She brought it up to his physician and after some tests; Alex was diagnosed with Angelman's syndrome, the cause of his behavioral uniqueness, a wide gait, short attention span, and frequent smiling/laughing. Now eight years later, Alex was relaxed, stretched out on the couch across a good friend. "I think he brings out the goodness in people,'' his mother said. "You see, the simple things. He's sort of pared down to the simple; the basic caring of humanity."
Mountin Hopes through Alex' eyes, a gallery
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Blaise Shaw
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AUTHOR'S NOTE: I feel that I have been truly blessed by knowing Alex. I was talking with a friend the other night and I realized that Alex embodies my faith. He may not speak verbally, but he speaks to my heart because I listen. There are those who believe that Alex cannot communicate, but I believe that it is these people who do not know how to communicate. Alex always tries to put people together. If you are standing beside someone and you aren't touching, he will place your hands together. This makes me think of how God wishes that everyone would come together. He loves so purely, unconditionally. This is the love that I envision when I think of God, one that sees you for what you are and not what you should be.
Alex is my angel, sent to remind me that there is good in humanity and that just because there is evil and darkness in the night, the sun will rise and cast off the shadows that surround. I carry a part of him in my heart for now and for always. - Blaise Shaw
See also archived Bonner stories by B. Shaw, A. Dolezal, and C. Eleazer
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It all started in a small town church five years ago. Kathryn Graeter and Claire "Pat'' Magnus were talking about a disabled boy and a new experimental therapy. Therapeutic Riding is the idea that the natural gait of a horse will loosen muscles that are unused by disabled patients and make them ready again.
