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Personal Stories : Overcoming autism to help others
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Posted by lightfoot on Thursday, January 24, 2008 (21:30:48)
By Alex Cameron
DARYL Girling, of Frome, has not let autism stop him becoming a role model for other young people.
Although he has always found social activities and interaction difficult, he has overcome these challenges to help others.
His qualities earned him a Highly Commended prize in the Pride of Somerset Youth Awards.
He has developed the courage to ask about his differences and worked hard to gain an understanding of the social skills that most teenagers take for granted.
He opted to help others with disabilities by passing on the skills he is learning and volunteers once a week at a local Special Educational Needs school, using a special patience and understanding with the children.
His award nomination reads: "He could easily have become isolated and withdrawn, instead he has developed into an exceptional young man and a positive role model for other young people with additional needs.
"To volunteer may seem simple to many but for Daryl to do so, he has to overcome his own fears and anxieties which is a huge step and requires real courage."
somerset county gazette
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Personal Stories : What Does Not Destroy Me
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Posted by fullhouse on Thursday, June 21, 2007 (21:02:14)
This was written by my daughter when she was 16, about life as the sibling of someone with Autism. It was published in the Advocate. I thought people may enjoy it!
What Does Not Destroy Me Makes Me Stronger
By Elizabeth Boyd
Editor's note: The opinions expressed herein are those of the author exclusively.
Throughout your lifetime, there will be many times you will think you cannot go on. There will be many times you will think that something is just too much for you to handle, and you may simply say, "I can't." During these times, however, I like to think, "What does not destroy me makes me stronger." These are words to live your life by. You cannot live your life dreading what's around the next corner. Everything you strive for, everything you fight for will make you a better person and help you live your life to the fullest.
There are people in this world who look at life and see only the bad. They only see the things that have not gone their way or dwell on things that could have been, forgetting to focus on what they can do this very moment. Take, for example, a family with a husband and wife, married for 14 years with four wonderful children. This couple lives their life and raises their family with the utmost care. They teach their children morals and manners, but they also try to fill their family's lives with perfection. They focus on what could have been done better instead of enjoying special moments with their children. They miss opportunities that were right in front of them, and sometimes - sadly enough - it takes something tragic to put things into perspective.
For some families, like mine, there is one word that will change their lives forever, one word that will make them never again, as some people say, "sweat the small things in life." That word is "autism," a complex brain disorder that often inhibits a person's ability to communicate, respond to surroundings and form relationships with others.
An autistic child, like my little brother Austin, has to work weeks, months, and in some cases years to learn things others can learn in a day. An autistic child, like my little brother, has to learn how to play, how to hug, how to love. When there is someone in your family with autism, you start to look at everything you have in your life...and truly appreciate it. You see what you've accomplished and how it made you who you are today, how it made you a better person.
"What does not destroy me makes me stronger" - this is something to remind yourself of when someone in your family has autism...and believe it is true. If not, you simply cannot handle seeing how hard your entire family has to work, has to fight for everything, all for your loved one with autism. You hear the ongoing battle with insurance companies, when they will not pay for speech therapy for your brother because he never knew how to speak in the first place. You hear the insurance company say they will not pay for behavioral therapy to stop your brother from banging his head on the tile floor because he cannot tell anyone what he needs...but they will pay for a helmet for him!
When autism is in your life, you have to believe that it makes you a stronger person. You have to believe that you don't get handed anything in your life you cannot deal with, and that it is all worthwhile in the end. Yes, you may sometimes wonder how God can make anyone work this hard just to live. But then you soon realize that this one child can really put things into perspective.
My perspective comes at moments when my brother looks me right in the eye and says, "I love you, Bep." I know that anything I do in my life will never add up to what he will have to work for his entire life. Now, when I see an obstacle coming, I hold my head up high and think to myself, "If my little brother can do it, so can I."
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Personal Stories : Mother of autistic son focuses on helping others
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Posted by sylvia on Monday, January 29, 2007 (11:03:29)
The Star Press
By JOHN CARLSON
MUNCIE - They call it being "on the spectrum," three words that can turn the world upside-down for parents of an autistic child.
It's a phrase that Belinda Hughes knows well.
A child on the spectrum has been identified as afflicted with autism and falls somewhere between mildly affected, like Belinda's six-year-old son Gabriel is, and severely affected.
Whatever the level, for these parents, life has likely changed forever.
"It bleeds over into everything you do," said the 36-year-old Central High School graduate, who holds a political science degree from Ball State University and formerly worked as a paralegal. "Socially, it's difficult."
Autism is defined by the World Health Organization as a developmental disability of the human central nervous system that specifically affects social interaction, communication, interests, imagination and activities.
What does that mean in practical terms?
"Every day is different," Belinda said, noting that Gabriel's unpredictable behavior may find her comforting her son on the floor of a Wal-Mart while he has an emotional meltdown. "It's that frustration in him that he can't communicate what he wants to communicate. ... People look at you and stare at you, but you can't be self-conscious. What's important is what you're teaching your child at that moment."
Gabriel, a kindergartner at Grisson Elementary School, is the middle of three sons Belinda has with her husband Willis, an Indiana State Trooper and Ball State criminal justice graduate. The other two are Benjamin, 9, and Jacob, 2.
'I felt pretty helpless'
A longtime member of the Army National Guard as well, Willis was serving as a platoon leader in Iraq when his son was diagnosed with autism, the culmination of a long and frustrating medical process.
The boy's pediatrician thought his condition was something he would outgrow. Even the physicians at Riley Hospital for Children didn't diagnosis the affliction.
"Gabe tested out of the autistic ranges," Belinda said. "It was a time when I felt pretty helpless."
It was another Muncie physician, Craig Hughes, who finally made the diagnosis, a move that opened up a world of services to help Gabriel and the family cope and treat the child's condition.
About this time, fortuitous encounters with Judi Minnear, an autism expert with Muncie Community Schools, and David McIntosh, a professor in Ball State's Department of Special Education, led to what has now become a focus of Belinda's life.
Born of her frustrating experience, INTERLOCK - its e-mail address is piecing2gether@cs.com - is a new support group Belinda started for the families of autistic children.
"We knew there were a lot of resources here," she explained, discussing why the organization was formed. "There had to be a way to make it cohesive for families. We wanted a way to tell families, 'These are what your options are.' I thought even if there was a suspicion of autism, parents ought to know what's ahead."
'Such a joy'
With McIntosh's support, the group meets once a month in the Ball State Student Center, providing not only informative speakers and services but also students in related fields like developmental education and speech and audiology to look after the kids, autistic and otherwise.
"It gives them practical experience with kids with autism," Belinda said.
Another participant, Lisa Compton, supplies the special "sensory products" - weighted blankets and vests, for example - that help break through the cognitive walls surrounding autistic kids, lending a sense of comfort to them.
The group has also begun fund-raising efforts, donating money to special education classes in the schools, and hopes to sponsor an Autism Walk on April 28 to raise more money.
Meanwhile, Willis - whom Belinda met years ago at a Halteman Village Baptist Church youth retreat - has also been working tirelessly, developing an autism education program that is going to be taught to fellow troopers at the Indiana State Police Academy.
"We're really excited about it," Belinda said, noting that autism is reaching epidemic proportions, with one Hoosier child in every 166 being afflicted.
Of those children, three out of four are boys. It's a sobering fact that makes Belinda happy to be doing what she started with INTERLOCK.
"It's a job," she said with a laugh, looking a little bit harried, "but it's such a joy."
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Personal Stories : Give me a break
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Posted by sylvia on Saturday, November 12, 2005 (10:07:00)
The Times Online September 2005
By Mike Lesser
Mike Lesser was fed up with society’s negative view of his autism — so he set out to change it
“I found a parcel on the porch,†I said, entering the kitchen. “Thanks,†said my hostess, the wife of a fellow mathematician, while washing salad in the sink. “Put it on the table.â€
“Which table?†I asked, for none was evident. “How many tables are there?†she replied brusquely. At this point I felt things beginning to skid. I knew that she did not require an inventory of tables in their splendid new home, but she still had not given me any idea where she wanted the wretched parcel put and she was becoming angry.
I fell back on the truth, a fool’s strategy if there ever was one. “I don’t know how many tables there are.†She grabbed the parcel and slammed it down on a work surface. “On the table,†she shouted very loudly. I felt humiliated. But I didn’t say: “That’s not a table; that’s a work surface.†I’ve learnt to be careful.
We talked about it afterwards. She said that she could not imagine why I cared where the parcel was put, and did not think that cooking supper was a good time for philosophy. In her terms, I had been insensitive to her instruction to dump the parcel anywhere, and oversensitive to her passing irritation.
It was a combination that she found hard to deal with. I decided not to say that her original instruction had been imprecise to the point of incomprehensibility and her anger an inappropriate response to uncertainty. I’ve learnt to be careful. There are a lot of people who just don’t think like me.
I was born in 1943, the year that the Austrian psychiatrist Leo Kanner first recorded a pattern of symptoms in some children that he labelled “early infantile autismâ€. If I were born more recently, my condition would probably have been diagnosed as being “on the autistic spectrumâ€, but then I was a “problem childâ€. That is to say, I had noticed that few grown-ups seemed to have a clue what they were doing and I challenged them repeatedly as a consequence. I was fired in the direction of various mind doctors. At 15, my loud and repeated assertions that my teachers were stupid led to a shower of blows and my expulsion from Charterhouse School. I was, it was decided, uneducable.
I resent the assumption that autism is simply a disability. In fact, I believe that it may be an incredibly important asset for humanity. My life story doesn’t conform to the idea of the limited possibilities most people associate with autism. After school I was a member of the anti-nuclear group the Committee of 100, and spent my 17th birthday as a fellow prisoner of Bertrand Russell in Wormwood Scrubs. Ultimately I ended up sneaking down the wrong atomic bunker and spent six months hiding in a metal cutlery factory on the German North Sea coast. When I got back to England in the 1960s, I did my bit to bring the anarchist newspaper IT into existence and later became editor.
I had a position at an ecological research institute and got to run supercomputers at Nasa and Oxford, which was fun. Then I was the managing director of an industrial research company that won an international prize for technical innovation.
But it was my academic work on psychology and mathematical philosophy, which I began part-time in the early 1970s, that has played the biggest role in determining what I believe about autism and why I believe society has got it wrong. Working with the linguist Dr Dinah Murray, I became particularly interested in the relationship between language and the imagination, and we began to build a computer model of what is considered “normalâ€. And as we learnt more and more about the way people think, autism emerged as a “magic mirror†through which to see the various ways that the everyday human mind worked. We developed a model of the mind as an “interest systemâ€.
Dr Murray and I believe that people with autistic traits are part of the normal variety of human beings and that variety is a good thing. What differentiates them is how completely their interest or attention tends to be focused, and that has an impact on their lives in a society.
It can be argued that human knowledge and achievement is limited by our attention. Most of us do not have enough attention to deal with the demands of everyday life. That’s why 2,000 people die on the roads each year.
However, it seems that humanity has evolved a way of dealing with this problem of scarce attention by giving some people the propensity to focus their attention in a concentrated beam, an attention tunnel. This approach is often diagnosed as autism or Asperger’s syndrome. There is a minor but socially significant side-effect to this tight beam approach: it means that little attention is left for social rules, language, and how human beings relate.
People who are good at these succeed as salesmen, politicians and chat-show hosts. People who are good at focusing their attention succeed in activities as diverse as sport, science, war or remembering railway timetables.
These thoughts have informed the internet site Autism and Computing (www. autismandcomputing.org.uk), which I set up with Dr Murray, one of a number that have made a point of carrying scientific work by autistic scientists. Mathematics is my area. In working on our computer model of the human mind, the equation that Dr Murray and I used produced so much data that it required a supercomputer to run.
Our study of autism became increasingly relevant to me. I had never had much success in forming an image of myself based on the examples around me, but my far from typical mental architecture has begun to reveal itself in the light of our understanding of autism through the computer model.
Despite displaying a number of typical autistic traits, I do not regret my condition having never attracted the diagnosis of autism. Although some aspects of my life might have been easier if I had, I do not relish the prospect of being known as something that few people understand. I would rather be included in the vaster mystery of common humanity.
There is a growing international autism civil rights movement, with many people who have been labelled as autistic combining in self-defence against discrimination and stigmatisation. It is becoming, especially in America, a civil rights issue. Sympathetic as I am to those who wish to follow this course, I do not believe that it is possible to liberate a single section of humanity.
I do think, however, that tyranny requires an environment of collusion. For people with autism, there is a complicity in society that amounts to oppression. Everywhere people choose to view the autistic mind as something wholly negative — and that applies to those who are supposedly on the side of those who have had autism diagnosed.
The other day I glanced at a National Autistic Society publication which stated that autistic people are mostly of low intelligence. I wonder how I am supposed to react to this. The society publishes my work. It would be down- right autistic to write to the newspapers and complain.
The autism spectrum
The conventional view of autism is that it is a wide range of “developmental disabilitiesâ€, characterised by difficulty with social interaction and a tendency towards strict routines and repetitive behaviour.
At the “higher functioning†end of the spectrum are children and adults with a condition called Asperger’s syndrome, who have fewer problems with language than those with more severe autism at the other end of the scale.
Some researchers believe that autism is badly defined, and that rather than being a disability, many types should be seen as part of a continuum of human characteristics — some of which society deems acceptable.
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Personal Stories : Austin's world
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Posted by sylvia on Tuesday, November 08, 2005 (20:21:14)
News-Press August 2005
By Maureen Bashaw
The brother and sister who played together in a Fort Myers park have an extraordinarily powerful relationship.
The brilliant late morning sun turned the boy's fair face bright pink and caused droplets of perspiration to dampen his sand-colored hair.
Austin Boyd seemed to be the typical 5-year-old as he pushed himself through a plastic tunnel in the park's playground. Ten minutes or so earlier when his sister, Elizabeth, 15, struggled to hold him as he kicked and screamed, he appeared to be a spoiled brat.
Between those two incidents, when Austin picked up handfuls of playground mulch and watched intently as the rough wood clippings fell through his fingers, he came across as a little odd, out of touch with his surroundings. If Elizabeth hadn't called out to him and diverted his attention, forcefully suggesting he go through the tunnel again, Austin probably would have continued letting the pieces of mulch fall through his fingers as he retreated deeper and deeper into his own, private world.
"Way to go Austin!'' Elizabeth yelled and clapped as her brother walked slowly, like someone coming out of a dream, back toward the plastic tunnel and back toward reality.
"Go Austin. Goooo,'' Elizabeth encouraged.
Austin is autistic, one of an estimated 1.5 million people in the United States with this mental disability, which is often crippling. He's one of the thousands who can't cope with the stimuli of the modern world.
Elizabeth is more than just his sister. She is his playmate and his advocate.
"Austin is my hero,'' the teenager with long, silky brown hair and intense brown eyes told a roomful of grown-ups at a National Alliance for Autism Research meeting in Punta Gorda almost two years ago.
It was the kickoff luncheon for the first walk-a-thon organized by the newly formed Southwest Florida branch of NAAR and Elizabeth, then 13, and her mother, Sharon Boyd, were co-chairmen. Since then, Elizabeth, the youngest person to head up a NAAR walkathon, has been a crusader, helping to raise money for autism research and awareness of the disability and how it affects families. This year, she helped raise $91,000. She is now a familiar spokesman at NAAR meetings. Her goal is to become a pediatrician, specializing in autism.
"She's dedicated to raising money and finding answers,'' said Patty Tapia, NAAR's national coordinator.
"It all started out for Austin, but now it's for all the other kids,'' Elizabeth said. "It's for my kids, too. I mean, the odds are against me. I think autism is a genetic condition, triggered by the chemicals in the environment. There's a good chance I'll have a kid with autism.''
For now, Elizabeth is Austin's caregiver.
Sharon Boyd, 38, doesn't know how she would cope without Elizabeth.
"I know if I died tomorrow Austin would be OK with her,'' Boyd said as she sat at a picnic table and watched her daughter and son at play. "She'll fight for him.''
Sharon and her husband, Mark, owner of Mark Boyd's Pest Control, have three other children, Aubry, 13; Alyssa, 7; and Adam, 2. That day, Mark Boyd had stayed home in Englewood with the three siblings while Elizabeth and her mother drove into Fort Myers with Austin for his weekly therapy session with Kelly Nicolosi. After the session the threesome stopped at the playground before going home.
Nicolosi, an occupational therapist, thinks Elizabeth is wise beyond her years.
"She's taken on such an important role in Austin's life,'' she said. "She definitely has the ability to connect with him. I rely on her for input."
While Nicolosi talked, Austin walked in a perfectly straight line along the periphery of the playground, pushing a tiny toy car along the chain link fence, also in a straight line.
"He's into lines,'' Elizabeth said. "At home if we forget to lock the refrigerator, he'll start removing food and line it up on the kitchen table. He gets carried away.''
And then, when it looked like Austin was retreating into his own world again, Elizabeth and Sharon called to him.
"Come on Austin,'' Elizabeth coaxed. "Let's play.''
"Play,'' Austin repeated.
"Good talking, Austin,'' Elizabeth said.
Austin turned and ran toward his sister. She picked him up in her arms and swung him around. He laughed. Just like any child.
The next day when a reporter telephoned the family's home, Sharon Boyd's voice quavered. Austin could be heard screaming in the background. "He's having a meltdown,'' his mother said.
Moments later Elizabeth was on the telephone talking about her brother. She said he can't help the screaming fits.
She wants, more than anything, for Austin to be free of the urge to scream. To be free of the bonds that keep him in a separate world.
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