Like most 15-year-old students at Carroll County Intermediate School, Tyler Dobbs would like nothing more than a brand new iPad. But while most of his peers would use the handheld device for games and entertainment, an iPad is critical for Tyler, who is autistic, to communicate to the outside world.
Staff members throughout Carroll County Public Schools are trying to help Tyler, the son of Jennifer Dobbs, obtain a personal iPad through a program called The Puzzling Piece.
“Tyler is the son of Jennifer Dobbs, who has given her blessing for us to try to earn an Ipad for Tyler to use at home through a fantastic program called The Puzzling Piece! The Ipad has become an awesome tool for Tyler to use at school where he has access to one, but would really be beneficial to use at home also,” an e-mail sent to all Carroll County School employees stated. “Here’s the deal - you can go the link below (http://www.thepuzzlingpiece.com/products.html) and click on the tab marked Ipad Challenge Pieces. Order any piece - when the order page comes up there is a box marked CHALLENGERS NAME - very important - type Tyler Dobbs!!! If we get orders for 60 pieces, Tyler gets an Ipad!!! Additionally part of the cost of the item also goes to help fund programs for kids with Autism.”
Jennifer Dobbs said sometimes you hear stories of some miraculous treatment for autism, causing people to flock to it in the hopes of a cure. But the reality is, those stories are the exception, not the rule.
“For the vast majority of us, progress is slow and marked by accomplishments that most people would see as small… but to us, they’re major victories to celebrate,” Dobbs said. “For example, a few months ago Tyler came out of his room one morning dressed in a shirt he’d taken out of the closet and put on all by himself. It was inside out and backward, but he had done it alone, without anyone asking him to! I wanted to laugh and cry at the same time.”
People with autism who can speak describe “thinking in pictures,” Dobbs said. They need visual images to attach meaning to a written or spoken word. In addition, their brains process information differently, she said. Too many words, especially if spoken too quickly, may sound like gibberish or like a radio station going in and out as you drive through mountains. The advantage of an iPad is it provides tons of visuals and instant access.
Differences in brain function also affect the ability to understand cause and effect, concepts of time and sequences of events, and motor planning to accomplish a task. For instance, an example of motor planning (and cause-effect) is using a mouse to operate a computer. The advantage of an iPad in this case is its touch screen and variety of educational applications for different aspects of autism, Dobbs said.
“Probably the best way to understand what life is like for a person with autism is to imagine being in a foreign country, where you don’t speak the language and no one speaks yours. Everything is different - the customs, routines, the gestures people use. You don’t understand what any of it means,” Dobbs said. “On top of that, imagine the sensory input is overwhelming - noise from traffic and loud voices, smells from foreign foods, bright flickering lights. Here’s one way to illustrate the impact of sensory input: when you’re in a heavy, tense traffic situation on unfamiliar roads, have you ever had to turn off the radio to concentrate? Imagine never being able to turn off, or even turn down, the distractions around you while you’re trying to understand a language and world that are foreign to you. That’s what people with autism tell us their lives are like.”
Unlocking a higher quality of life
Chief among the reasons Dobbs hopes for a personal iPad for her son is to provide him with a way to communicate with the people he’s closest to, especially things like emotions, distress and pain. He needs a tool for expressing himself to the family, and the family needs a tool to communicate things to him that he may not otherwise understand, she said.
“Right now, Tyler can use words to ask for things like foods or a favorite toy. But where his lack of speech is a huge problem is communicating more abstract ideas, like pain or sickness,” Dobbs said. “Most people with autism don’t understand nonverbal cues like pointing. Think about how babies with an ear infection usually pull on their ears… or how you can ask a small child to show you what hurts, and they’ll point to it. Tyler never did that, never indicated the source of pain when he had an ear infection or sore throat, and at 15 he still has no way to make us understand what’s wrong when he’s in distress.”
In the absence of any other way to communicate, people often exhibit aggressive or self-injurious behavior, Dobbs said. It’s their only way to express that something is wrong. If Tyler had a headache, he might start hitting himself in the head.
“He’s a big, strong boy, and he has left bruises on his own face and body. I can’t describe how heartbreaking it is to watch this happen, unable to help because I don’t know what’s wrong and he cannot tell me,” Dobbs explained. “There’s only one thing worse - wondering what will happen to him when his parents are no longer around to care for him.”
As Tyler’s mother, Dobbs has learned to recognize some behaviors and make an educated guess about whether he’s having a headache or something else. Her nightmare is wondering what will happen to Tyler when he has to live in a world where he is completely vulnerable and can’t ask for help when he needs it.
“Tyler has a critical need for a communication device. It’s my sincere hope that the iPad can be that device,” Dobbs said.
The progress is slow, but Dobbs says when you love someone with autism, every baby step is a major victory. Recently, for the first time, he spontaneously went to a computer with a touch screen at school and began playing a game.
“That’s huge in our world. He’s had access to a touch screen computer for years, but never took the initiative to use it on his own… he never seemed to understand what to do, or he seemed uncomfortable looking at the screen for more than a few seconds,” Dobbs said. “Also, since therapists at school have been using an iPad to illustrate routines and procedures, he seems to have less anxiety…he seems more calm and focused, happier and cooperative. In other words, he seems to have a better understanding of what’s going on around him, and what’s expected of him, which is reassuring.”
While those are small accomplishments, they are very crucial to accomplishing the larger goals ahead. Getting an iPad for Tyler could end the nightmare of him living locked alone in his world for the rest of his life, without a way to express his feelings or ask for help when in pain or distress.
“I don’t mean that he’ll live a ‘normal’ life. He’ll always need support from caregivers,” Dobbs said. “But if he could communicate at a basic, functional level with those caregivers, the quality of his life will improve dramatically.”