JENNIFER JONES
Contributing Writer
Teresa and Kelley Nakoff look autism in the eyes as they go through their day-to-day lives as the parents of their 12-year-old son, Chase.
A student at Rodger O. Borror Middle School, Chase was diagnosed with severe autism in 1998, around the time of his second birthday.
Adjusting to the news of having a son diagnosed with autism took time, Mrs. Nakoff said.
“Even before your kids are born, you make such plans for them,” she said, wiping a tear from her eye. “But when you find out something like this, you just have to make new plans and goals for them.”
Mrs. Nakoff said living as the parent of a handicapped child brings with it a unique set of challenges.
“You really have to learn how to take life day-to-day,” she said. “It does get better, it does get easier — but it’s always a challenge.”
“An early intervention specialist mentioned autism to me when Chase was about a year-and-a-half, because she saw a lot of characteristics in Chase. She recommended we take him to see a specialist,” Mrs. Nakoff said. “I refused to believe it. In my quest to prove her wrong, I started reading everything about autism that I could get my hands on. What I discovered, is that a lot of the things being described are a lot like Chase.”
When Chase was 2 years old, his parents began the process of Applied Behavioral Analysis (ABA) therapy in their home. Chase went to preschool both in the Wilmington City Schools, and at the Town & Country School at the Nike Center. Chase attended school in a regional classroom specially designed for autistic children, which was housed in Lynchburg.
When the Wilmington City Schools opened its special classroom for autistic children, Chase began attending Holmes Elementary. This year, he has transitioned to Rodger O. Borror Middle School, where he is taught by teacher Debra Flint, and aided by Sharon Carr and Cindy Miller.
“He has done superb this year,” his mother said, unable to mask the pride she has for her son. “He is just going so far this year — and I think it has a lot to do with the set-up at the middle school.”
The set-up Mrs. Nakoff is talking about is one with space that allows for the accommodation of Chase’s sensory needs. Like many children with autism, Chase can become overwhelmed by the sounds, sights and expectations of a classroom. Without the ability to use words to express his frustrations, Chase has been known to show his frustrations by jumping, yelling and striking out. But — not at Rodger O. Borror Middle School.
The walking track around the gymnasium has become Chase’s refuge. When staff members see his mounting frustration, they can take him to walk a couple of laps around the gym. This allows Chase to center himself for a successful return to the classroom.
The Nakoff’s have another son, Dylan, who is a fifth-grader at Holmes. Mrs. Nakoff said Dylan, who is a part of the gifted programming offered by the Wilmington City Schools, is good with his brother.
“We’ve always told him, ‘He might be different, but he’s your brother.’ He loves his brother very much,” she said.
Mrs. Nakoff and Susan Frazier have joined up to form a support group for parents of children with autism. The group, which they call SPEAK (Supporting Parents and Educators of Autistic Kids), meets monthly.
Messages of autism awareness can be seen on many television commercials and billboard ads. Mrs. Nakoff said she wishes she could make the world understand that kids diagnosed with autism “aren’t bad kids.”
“When we’re out and people see our kids meltdown, it’s not just bad behavior. They’re not spoiled brats,” she said. “These kids have social and behavior problems that aren’t their fault. I can’t just spank an autistic kid and make it all go away — but some people still think that.”
Mrs. Nakoff is often one of the first people who reach out to families in the area who receive a diagnosis of autism for their children. “We have to be there for each other,” she said.
Her advice to them: “I share with them the best thing that was ever said to me. When Chase was really little, someone told me that he might not be what I expected, but he is still a treasure to me.”
The tears Mrs. Nakoff wiped away after she said this only go to prove that Chase, indeed, is a treasure to her family.
Sunday, June 15, 2008
Friday, June 6, 2008
Gold Medal Moms Prepare To Storm Beijing
Jennie Finch thought she was busy back in 2004 when she led the U.S. softball team to Olympic gold in Athens. Already arguably the most famous softball player of all time, the media requests and business opportunities only intensified after the Games, and Finch struggled to balance work and softball with her relationship with then-fiancé, now-husband Casey Daigle.
Then an 8-pound, 10-ounce bundle of joy named Ace entered their lives on May 4, 2006, and Finch learned the true meaning of the word "hectic."
"It's like having the world in your hand and throwing it up in the air and letting it fall wherever," Finch, 27, said. "You just collect the pieces and do whatever you can."
Finch didn't wait long to tackle life as a working mom. She was at the national tryouts just five weeks after giving birth, and she and Ace hit the road with the team soon afterward, with the diapers, bottles and toys packed up with the batting helmets, gloves and cleats. Today, two years later, Finch estimates her son has spent a total of just four months in his actual house, and Ace won't be adding to that number any time soon. After he and Mom meet Dad, a pitcher for the Minnesota Twins, at home on Sunday to celebrate his second birthday (and, of course, Mother's Day), Ace rejoins the softball team as they prepare for the Olympics. That means they'll spend all but eight days on the road in June and July before heading off to Beijing.
But time away from home doesn't mean Ace loses out on playmates his own age. Catcher Stacey Nuveman's 11-month-old son Chase and pitcher Lisa Fernandez's 2-year-old son Antonio are also often with the team, and at the Beijing Olympics their strollers won't be the only ones pulled up to the sidelines. With more and more women finding that having children and pursing an Olympic dream not only go hand in hand, but can actually provide a competitive edge, this might just be the summer of the gold medal mom.
Viewing competition through mommy glasses
"I find being a mother is a huge advantage," said Melanie Roach, mother of three and Beijing hopeful in weightlifting. "Of course, I'm probably a little more tired than I might be if I didn't have children, but I think they provide me the balance that I need to keep my mind off of lifting. When I'm in the gym, I'm in the gym, and that is my focus. But when I'm not in the gym, I'm enjoying being a mom and taking care of those responsibilities ... They really do provide me with the balance that I need to be a more complete athlete."
Roach tried for years - and in two different sports - to reach the Olympics. It was not until she'd had her three children, including a son, Drew, who was diagnosed with autism at the age of 2 ½, that she gained the perspective she believes will propel her to Beijing.
"I think I was a pretty selfish athlete," she said. Roach, 33, started as a gymnast, and made the unlikely transition to weightlifting 10 years ago. She found success quickly in her second sport, but injuries thwarted her attempt to make the Olympic team.
And then Drew was diagnosed with autism.
"That really brought into perspective all the things that I thought were so devastating in my early career, in my 20s," Roach said. "All of a sudden, not making the Olympic team seemed so minute compared to having a child diagnosed with autism ... [It] made weightlifting just a bonus part of my life. It's not a stress at all. It's really something very special, and just an exciting opportunity that I have to go back and finish what I started eight years ago."
Finishing that journey takes an entire team, Roach readily admits. Her husband, Washington state legislator Dan Roach, pitches in every way that he can, and her mother, Bonnie Kosoff, recently moved in to help with the children.
"I'd like my children to learn that anything is possible if you put your mind to it, and that when you make a decision to do something like pursuing the Olympics, like I have, it needs to be a family affair," Roach said. "It needs to be a group effort, and you hope it's something that would bring your family closer together."
The team behind the team
On a recent softball tour through the Southern states, Finch's aunt and uncle joined the team caravan, allowing the moms and kids to follow the bus in their motor home for a few days. There's always a grandma or aunt or dad in the mix of softball coaches, players and trainers, thanks to a donation by a UCLA alum that pays the travel expenses for a relative of each of the softball moms. USA Softball helps out by providing the moms with their own hotel rooms, rather than doubling up like the other players do.
"I'm just so grateful that [Ace] can be on the road with me," Finch said. "I can't get enough of him."
Three-time gold medalist and professional basketball star Lisa Leslie, 35, relies on her own mother to watch 10-month-old Lauren when they travel.
"I feel really comfortable when she's left with grandma," Leslie said. "I can focus and not worry about her too much."
Like many children of professional athletes, Lauren is already a world traveler, having been overseas and to more than 10 states. While the ability to take Lauren on the road allows Leslie to maintain some semblance of her previous life, more things have changed than stayed the same since she entered motherhood.
While her teammates jam to the latest hits in the locker room, Leslie can't get "The Wheels on the Bus" out of her head; when the team goes out after a victory, mom heads straight home to tuck Lauren in. And those are only the most superficial differences.
"Being a mom changes everything," said Kate Markgraf, USA soccer star and mother to 22-month-old Keegan.
Markgraf, a defender who holds the distinguished record for most games played for the U.S. without a goal scoring, has already won two Olympic medals. But coming from a team with a long tradition of soccer moms, she knows better than to let her new role stop her from pursuing a third.
"I think being a parent puts you at an advantage," Markgraf, 31, said. "I don't sleep nearly as much as my teammates. But my best game since becoming a parent was after I stayed up the entire night because my son was teething. And I ended up having the best game of the year. So I think it's definitely an advantage because it just puts everything in the right perspective."
Leslie agrees.
"It's just an awesome feeling to see her little face and her excitement in the morning. It really drives me."
Then an 8-pound, 10-ounce bundle of joy named Ace entered their lives on May 4, 2006, and Finch learned the true meaning of the word "hectic."
"It's like having the world in your hand and throwing it up in the air and letting it fall wherever," Finch, 27, said. "You just collect the pieces and do whatever you can."
Finch didn't wait long to tackle life as a working mom. She was at the national tryouts just five weeks after giving birth, and she and Ace hit the road with the team soon afterward, with the diapers, bottles and toys packed up with the batting helmets, gloves and cleats. Today, two years later, Finch estimates her son has spent a total of just four months in his actual house, and Ace won't be adding to that number any time soon. After he and Mom meet Dad, a pitcher for the Minnesota Twins, at home on Sunday to celebrate his second birthday (and, of course, Mother's Day), Ace rejoins the softball team as they prepare for the Olympics. That means they'll spend all but eight days on the road in June and July before heading off to Beijing.
But time away from home doesn't mean Ace loses out on playmates his own age. Catcher Stacey Nuveman's 11-month-old son Chase and pitcher Lisa Fernandez's 2-year-old son Antonio are also often with the team, and at the Beijing Olympics their strollers won't be the only ones pulled up to the sidelines. With more and more women finding that having children and pursing an Olympic dream not only go hand in hand, but can actually provide a competitive edge, this might just be the summer of the gold medal mom.
Viewing competition through mommy glasses
"I find being a mother is a huge advantage," said Melanie Roach, mother of three and Beijing hopeful in weightlifting. "Of course, I'm probably a little more tired than I might be if I didn't have children, but I think they provide me the balance that I need to keep my mind off of lifting. When I'm in the gym, I'm in the gym, and that is my focus. But when I'm not in the gym, I'm enjoying being a mom and taking care of those responsibilities ... They really do provide me with the balance that I need to be a more complete athlete."
Roach tried for years - and in two different sports - to reach the Olympics. It was not until she'd had her three children, including a son, Drew, who was diagnosed with autism at the age of 2 ½, that she gained the perspective she believes will propel her to Beijing.
"I think I was a pretty selfish athlete," she said. Roach, 33, started as a gymnast, and made the unlikely transition to weightlifting 10 years ago. She found success quickly in her second sport, but injuries thwarted her attempt to make the Olympic team.
And then Drew was diagnosed with autism.
"That really brought into perspective all the things that I thought were so devastating in my early career, in my 20s," Roach said. "All of a sudden, not making the Olympic team seemed so minute compared to having a child diagnosed with autism ... [It] made weightlifting just a bonus part of my life. It's not a stress at all. It's really something very special, and just an exciting opportunity that I have to go back and finish what I started eight years ago."
Finishing that journey takes an entire team, Roach readily admits. Her husband, Washington state legislator Dan Roach, pitches in every way that he can, and her mother, Bonnie Kosoff, recently moved in to help with the children.
"I'd like my children to learn that anything is possible if you put your mind to it, and that when you make a decision to do something like pursuing the Olympics, like I have, it needs to be a family affair," Roach said. "It needs to be a group effort, and you hope it's something that would bring your family closer together."
The team behind the team
On a recent softball tour through the Southern states, Finch's aunt and uncle joined the team caravan, allowing the moms and kids to follow the bus in their motor home for a few days. There's always a grandma or aunt or dad in the mix of softball coaches, players and trainers, thanks to a donation by a UCLA alum that pays the travel expenses for a relative of each of the softball moms. USA Softball helps out by providing the moms with their own hotel rooms, rather than doubling up like the other players do.
"I'm just so grateful that [Ace] can be on the road with me," Finch said. "I can't get enough of him."
Three-time gold medalist and professional basketball star Lisa Leslie, 35, relies on her own mother to watch 10-month-old Lauren when they travel.
"I feel really comfortable when she's left with grandma," Leslie said. "I can focus and not worry about her too much."
Like many children of professional athletes, Lauren is already a world traveler, having been overseas and to more than 10 states. While the ability to take Lauren on the road allows Leslie to maintain some semblance of her previous life, more things have changed than stayed the same since she entered motherhood.
While her teammates jam to the latest hits in the locker room, Leslie can't get "The Wheels on the Bus" out of her head; when the team goes out after a victory, mom heads straight home to tuck Lauren in. And those are only the most superficial differences.
"Being a mom changes everything," said Kate Markgraf, USA soccer star and mother to 22-month-old Keegan.
Markgraf, a defender who holds the distinguished record for most games played for the U.S. without a goal scoring, has already won two Olympic medals. But coming from a team with a long tradition of soccer moms, she knows better than to let her new role stop her from pursuing a third.
"I think being a parent puts you at an advantage," Markgraf, 31, said. "I don't sleep nearly as much as my teammates. But my best game since becoming a parent was after I stayed up the entire night because my son was teething. And I ended up having the best game of the year. So I think it's definitely an advantage because it just puts everything in the right perspective."
Leslie agrees.
"It's just an awesome feeling to see her little face and her excitement in the morning. It really drives me."
Mother Of 2 Autistic Children Wishes For Understanding
A mother of two small children said she's horrified by the way others sometimes treat her family and she'd like you to help make it stop.
Christine Ferguson has two children, both with autism.
She said she knows that, right now, there is no medical miracle to "fix" autism.
Therapy helps but her children are unpredictable and often very difficult in public.
She said the lack of tolerance from others just makes it worse.
Playtime at the Ferguson's looks very typical, not what you expect from children with autism.
But that's the problem, according to Ferguson, the mother of 2-year-old Paige and 3-year-old Tyler.
Tyler and Paige are highly sensitive to their environment and their behavior can change at any time.
When things fall apart in public, as it often does, Ferguson said some people are less than sympathetic.
"They don't understand that their comments, their looks, you know, their whole act toward us is very hurtful because it is not accepting," Ferguson said. "There is nothing physically wrong with them. They perceive it as this is just an undisciplined child and they feel that it's OK to say something."
She said it gets really bad when people say unpleasant things directly to the children.
Heading home isn't always an option.
"If I left the store every time my son did something or my daughter did something I wouldn't have clothes or groceries," Ferguson said.
She said by extending a higher level of tolerance to those with differences, her life and the lives of her children would improve. Like it did during a trip to the hair salon.
"Normally, Paige screams and she kicks and she does not want to be there. And it's a very dangerous struggle for her because she could hurt herself around the scissors or could do something that could cause harm to herself," Ferguson said.
But that didn't happen during a recent haircut because instead of becoming angry and frustrated Ferguson said the stylists at Best Cuts did everything to help.
Three stylists went to work at no extra charge and Paige was transformed.
Not only did she get a cut, she now loves the salon.
Ferguson said the women have no idea how much it meant to her.
"Everybody in the world wants to be accepted and everyone wants to know that it's OK to be who they are," she said.
"Just to know that it made the difference for someone, it definitely helps motivate you to keep doing it," salon manager Christy Bishop said. "We just have to try and be patient with people with anybody not just kids with special needs with anybody."
Ferguson said some parents with autistic children handout business cards that say, "Please be understanding, my child has autism."
She often wears a T-shirt in public that says something similar.
Ferguson said of course, some people are very understanding and helpful.
She said all she really needs is a smile or a quick glance of understanding.
Christine Ferguson has two children, both with autism.
She said she knows that, right now, there is no medical miracle to "fix" autism.
Therapy helps but her children are unpredictable and often very difficult in public.
She said the lack of tolerance from others just makes it worse.
Playtime at the Ferguson's looks very typical, not what you expect from children with autism.
But that's the problem, according to Ferguson, the mother of 2-year-old Paige and 3-year-old Tyler.
Tyler and Paige are highly sensitive to their environment and their behavior can change at any time.
When things fall apart in public, as it often does, Ferguson said some people are less than sympathetic.
"They don't understand that their comments, their looks, you know, their whole act toward us is very hurtful because it is not accepting," Ferguson said. "There is nothing physically wrong with them. They perceive it as this is just an undisciplined child and they feel that it's OK to say something."
She said it gets really bad when people say unpleasant things directly to the children.
Heading home isn't always an option.
"If I left the store every time my son did something or my daughter did something I wouldn't have clothes or groceries," Ferguson said.
She said by extending a higher level of tolerance to those with differences, her life and the lives of her children would improve. Like it did during a trip to the hair salon.
"Normally, Paige screams and she kicks and she does not want to be there. And it's a very dangerous struggle for her because she could hurt herself around the scissors or could do something that could cause harm to herself," Ferguson said.
But that didn't happen during a recent haircut because instead of becoming angry and frustrated Ferguson said the stylists at Best Cuts did everything to help.
Three stylists went to work at no extra charge and Paige was transformed.
Not only did she get a cut, she now loves the salon.
Ferguson said the women have no idea how much it meant to her.
"Everybody in the world wants to be accepted and everyone wants to know that it's OK to be who they are," she said.
"Just to know that it made the difference for someone, it definitely helps motivate you to keep doing it," salon manager Christy Bishop said. "We just have to try and be patient with people with anybody not just kids with special needs with anybody."
Ferguson said some parents with autistic children handout business cards that say, "Please be understanding, my child has autism."
She often wears a T-shirt in public that says something similar.
Ferguson said of course, some people are very understanding and helpful.
She said all she really needs is a smile or a quick glance of understanding.
My brother, John by Jacquie
I am writing as the sister of John, who was born in the North East of England in 1958. John is my younger brother by five years. I was so excited to have a baby brother and can remember his homecoming. My dad, being the archetypal macho Northerner that he was, typical of this era, went out and bought John a pair of boxing gloves and a train set, obviously expecting his son to be a chip off the old block.
John was a beautiful, blonde baby with huge blue eyes. He was seemingly 'normal'. He walked and talked at the expected milestones and, in hindsight, the only clue that we had of any differences in his development was that he was exceptionally clingy to Mum; he was scared to venture across the doorstep (he would scream) and would not engage with anyone else. John loved his building cups which stacked one on top of the other and I had fun building them up and knocking them down. John, however, was disinterested in this, preferring to place each coloured cup around the room. If they were moved, or one was lost, he was inconsolable for the whole day.
My mum was concerned at his clinginess to her but our GP dismissed her worries as those of an over-anxious mother. At the age of three, John had normal verbal skills and his memory seemed phenomenal. He could recite all the road signs in the highway code without error. However, he was extremely wary of other people, always avoiding eye contact and getting increasingly difficut for my mum to manage. He had tantrums which became worse as he struggled to make sense of his world.
When he was five years old I remember him walking the street with a large, toy red bus set at an awkward angle to his temple. The bus was pointing skywards and he was looking into the bus. We could make no sense of this at all. He did this frequently and he also had a fixation about spires, steeples and television aerials. The building cups, for him, now represented local churches and we knew that there would be trouble if we moved 'St Barnabas' or 'St Paul's'.
One day I took his bus, put it at the funny angle on my head just as he did, and tried to see what he was looking at. I discovered that he was using the reflection of the bus windows at a strategic angle to look at roof aerials. As he walked along the street he got a moving personal picture show of every rooftop aerial and telegraph pole. It also meant he did not have to strain his neck by looking up for significant periods of time. John's world was mapped by these projections and they are still fundamentally important to him. He was disinterested in people and when later he realised that other families lived in the other houses on our street, he would need to know what colour the mattresses were on their beds. His first comment when introduced to someone used to be, 'What colour is your mattress?'
At home, I learned that if John was calm and happy then so were the rest of my family, and my dad was less likely to get angry. Dad's anger could be quite terrifying.
Perhaps to help cope with the underlying tension at home, John developed an alter ego called Jonnie Comics. If John had done anything wrong, then Jonnie Comics was to blame. Jonnie Comics was around for a couple of years. Mum knew there was something wrong but no-one listened. All her fault, they said: she is too sensitive and is an over-protective mum. The other kids sensed he was different, too. He was starting to become a victim but I was always on red alert, being the older sibling. I got into numerous scraps because no-one hits my brother; it's not allowed! Besides, Dad had shown me how to use those boxing gloves he'd bought for John.
When John started school, he seemed to be unteachable. He would not settle, and at last people took my mum's concerns seriously. Psychiatric assessments followed and questions were asked about our family dynamics: was I jealous of my brother (nothing was further from the truth)? Was he like my dad, a volatile character? My mum queried the times she had seen my dad clip John across the head, which parents often did then - it was accepted and I had had more clips than anyone. They never really hurt and Dad was usually sorry afterwards.
My dad retreated to the pub, full of guilt that maybe his son's handicap was a direct result of his own actions or that John had inherited his own so-called madness (my dad was rarely able to control his anger and was nicknamed Mad Ted). It was, sadly, a time of sheer ignorance. Words like autism, psychotic and schizophrenic were bandied about with no true understanding of their meaning. Certainly they held no real meaning for us.
John attended a children's assessment unit for six months as a weekly boarder and as a result was offered a place at a special needs boarding school in Gloucester, under the Rudolf Steiner foundation. John seemed to take easily to living away from home. It was Mum who struggled to let him go. We accepted that he was mentally handicapped; someone had mentioned the word 'autistic', which accurately described a great deal of John's behaviour.
My mum went on to have two more children and John would come home for the holidays. However, she struggled with his constant, repetitive behaviour and questions. On the plus side, John was getting better developmental skills and could play the glockenspiel and piano if he was in the mood. He did it instinctively, playing any tune with one hand. On the minus side there was always an undercurrent of despair at home that was not openly expressed. There was still blame and tension, and John was increasingly aware that he was different. He would ask why he had to go away to school, unlike his brothers and sisters. He asked if he was handicapped. What did handicapped mean? Would he ever get married? We skirted round these issues, never fully dealing with them because we did not know the answers ourselves, really.
John was manic, always anxious, often difficult. Thank heavens for the Beatles, 60s music and the pop charts. John loved, and still does love, all 60s music. He can tell you instantly what was number one in July 1967. He would listen to music for hours and this became our saviour. He was also becoming a very handsome young man who was starting to attract female attention but he was totally disinterested. As far as I know sexuality has never been a part of his world, then or since.
As he grew up, John was fortunate to be given a place at another special needs institution for teenagers in Bristol. All this travelling to and fro gave him another fixation - railways. He loved the trains, lines, stations and anything else to do with railways. He seemed to be doing well, but then our mum died at the age of 47 after two horrendous years with a very uncommon cancer. John did not attend the funeral. He very matter-of-factly said that I had taken Mum's place now. No emotion. Dad now had an 11 and 13-year-old to look after and I was newly married with my first child, who was just one year old. Dad struggled, so I did, indeed, take on the role of mum to all.
I managed to get John into a village community for people with learning difficulties for a few years, which was closer to our home. Although it was great for him initially, he became increasingly withdrawn. After all, where were the rooftop aerials in this picturesque village? Why should he care about the cows? (Once, he let them all out of their field and still thinks the police will come and get him for that, no matter what we say.) As we all do as teenagers, John was struggling to make sense of who he was, and was starting to suffer from depression.
His depression worsened and he was placed in a mental institution. Just being there with some severely damaged patients had a distressing affect on John. I was aware that it would and tried to get help, but was not taken seriously. John then jumped out of a window and sustained a serious head injury. His psychiatrist was quick to ring and stutter about it not being his fault and I was not prepared to go down the blame route. I had had enough experience of the damage and negativity that this brings. Instead, I changed his psychiatrist and gave my word that John would never go to that institution or medic again. I kept my word. John was, thankfully, then properly looked after by a great team of professionals who still review and assess all aspects of his life, in particular his medication, which controls his mood.
John is now 49 years old and lives in a hostel for vulnerable adults, where he is happy. The hostel is run by a woman who is very capable and enlightened and who understands her residents' individuality as well as managing their safety. John can come and go when he pleases and can frequently be seen in the coffee shop or the local pub, where he has an orange juice whilst listening to the jukebox. The hostel is in a village at the edge of town where people have known him for 15 years and he considers it home. He has come to terms with his handicap. He understands that he needs some assistance with daily life and routines. He understands that it may be difficult for him to marry as he would struggle with the practicalities of having a wife, but we never take away his hope. His hope is that one day he will have a place of his own. I will never take away that hope but I do tell him it is unlikely.
When he comes to stay with me for the weekend he now holds my hand for a fleeting second, tells me that he loves me, and says that he misses Mum but that I have taken her place. He loves the bedroom on the third floor of our house where he can look out at aerials while listening to 60s music.
A few years ago, he had a special 40th birthday where he gave a speech of thanks to everyone and sang with a friend accompanying him on guitar. He was amazing. Dad, who never really accepted him or understood, cried.
I have just given you a snapshot of our journey with John. When I would meet people who did not know about his condition, I would always introduce him as my special brother, so that they could be alerted early to save any potential embarrassment. John said to me, "Why do you say that? We are all special, aren't we?" So I now introduce him simply as my brother, John.
The important message that I would like to convey is that John has developed so much emotionally and continues to develop and learn - we don't know what his limits are. Once I fully accepted John for the wonderful person that he really is and stopped worrying about other people's issues with him, we started to enjoy life more. Society now is much more accepting. For example, buying clothes for John used to be a nightmare - he hates it. But in the last few years staff in shops have been fantastic and so helpful, particularly the younger ones - things just keep getting better. As a family we have faced considerable adversity but we have also been lucky, with excellent support from some professionals and good people along the way. I am privileged to have John as my brother and I love him very deeply.
By Jacquie
John was a beautiful, blonde baby with huge blue eyes. He was seemingly 'normal'. He walked and talked at the expected milestones and, in hindsight, the only clue that we had of any differences in his development was that he was exceptionally clingy to Mum; he was scared to venture across the doorstep (he would scream) and would not engage with anyone else. John loved his building cups which stacked one on top of the other and I had fun building them up and knocking them down. John, however, was disinterested in this, preferring to place each coloured cup around the room. If they were moved, or one was lost, he was inconsolable for the whole day.
My mum was concerned at his clinginess to her but our GP dismissed her worries as those of an over-anxious mother. At the age of three, John had normal verbal skills and his memory seemed phenomenal. He could recite all the road signs in the highway code without error. However, he was extremely wary of other people, always avoiding eye contact and getting increasingly difficut for my mum to manage. He had tantrums which became worse as he struggled to make sense of his world.
When he was five years old I remember him walking the street with a large, toy red bus set at an awkward angle to his temple. The bus was pointing skywards and he was looking into the bus. We could make no sense of this at all. He did this frequently and he also had a fixation about spires, steeples and television aerials. The building cups, for him, now represented local churches and we knew that there would be trouble if we moved 'St Barnabas' or 'St Paul's'.
One day I took his bus, put it at the funny angle on my head just as he did, and tried to see what he was looking at. I discovered that he was using the reflection of the bus windows at a strategic angle to look at roof aerials. As he walked along the street he got a moving personal picture show of every rooftop aerial and telegraph pole. It also meant he did not have to strain his neck by looking up for significant periods of time. John's world was mapped by these projections and they are still fundamentally important to him. He was disinterested in people and when later he realised that other families lived in the other houses on our street, he would need to know what colour the mattresses were on their beds. His first comment when introduced to someone used to be, 'What colour is your mattress?'
At home, I learned that if John was calm and happy then so were the rest of my family, and my dad was less likely to get angry. Dad's anger could be quite terrifying.
Perhaps to help cope with the underlying tension at home, John developed an alter ego called Jonnie Comics. If John had done anything wrong, then Jonnie Comics was to blame. Jonnie Comics was around for a couple of years. Mum knew there was something wrong but no-one listened. All her fault, they said: she is too sensitive and is an over-protective mum. The other kids sensed he was different, too. He was starting to become a victim but I was always on red alert, being the older sibling. I got into numerous scraps because no-one hits my brother; it's not allowed! Besides, Dad had shown me how to use those boxing gloves he'd bought for John.
When John started school, he seemed to be unteachable. He would not settle, and at last people took my mum's concerns seriously. Psychiatric assessments followed and questions were asked about our family dynamics: was I jealous of my brother (nothing was further from the truth)? Was he like my dad, a volatile character? My mum queried the times she had seen my dad clip John across the head, which parents often did then - it was accepted and I had had more clips than anyone. They never really hurt and Dad was usually sorry afterwards.
My dad retreated to the pub, full of guilt that maybe his son's handicap was a direct result of his own actions or that John had inherited his own so-called madness (my dad was rarely able to control his anger and was nicknamed Mad Ted). It was, sadly, a time of sheer ignorance. Words like autism, psychotic and schizophrenic were bandied about with no true understanding of their meaning. Certainly they held no real meaning for us.
John attended a children's assessment unit for six months as a weekly boarder and as a result was offered a place at a special needs boarding school in Gloucester, under the Rudolf Steiner foundation. John seemed to take easily to living away from home. It was Mum who struggled to let him go. We accepted that he was mentally handicapped; someone had mentioned the word 'autistic', which accurately described a great deal of John's behaviour.
My mum went on to have two more children and John would come home for the holidays. However, she struggled with his constant, repetitive behaviour and questions. On the plus side, John was getting better developmental skills and could play the glockenspiel and piano if he was in the mood. He did it instinctively, playing any tune with one hand. On the minus side there was always an undercurrent of despair at home that was not openly expressed. There was still blame and tension, and John was increasingly aware that he was different. He would ask why he had to go away to school, unlike his brothers and sisters. He asked if he was handicapped. What did handicapped mean? Would he ever get married? We skirted round these issues, never fully dealing with them because we did not know the answers ourselves, really.
John was manic, always anxious, often difficult. Thank heavens for the Beatles, 60s music and the pop charts. John loved, and still does love, all 60s music. He can tell you instantly what was number one in July 1967. He would listen to music for hours and this became our saviour. He was also becoming a very handsome young man who was starting to attract female attention but he was totally disinterested. As far as I know sexuality has never been a part of his world, then or since.
As he grew up, John was fortunate to be given a place at another special needs institution for teenagers in Bristol. All this travelling to and fro gave him another fixation - railways. He loved the trains, lines, stations and anything else to do with railways. He seemed to be doing well, but then our mum died at the age of 47 after two horrendous years with a very uncommon cancer. John did not attend the funeral. He very matter-of-factly said that I had taken Mum's place now. No emotion. Dad now had an 11 and 13-year-old to look after and I was newly married with my first child, who was just one year old. Dad struggled, so I did, indeed, take on the role of mum to all.
I managed to get John into a village community for people with learning difficulties for a few years, which was closer to our home. Although it was great for him initially, he became increasingly withdrawn. After all, where were the rooftop aerials in this picturesque village? Why should he care about the cows? (Once, he let them all out of their field and still thinks the police will come and get him for that, no matter what we say.) As we all do as teenagers, John was struggling to make sense of who he was, and was starting to suffer from depression.
His depression worsened and he was placed in a mental institution. Just being there with some severely damaged patients had a distressing affect on John. I was aware that it would and tried to get help, but was not taken seriously. John then jumped out of a window and sustained a serious head injury. His psychiatrist was quick to ring and stutter about it not being his fault and I was not prepared to go down the blame route. I had had enough experience of the damage and negativity that this brings. Instead, I changed his psychiatrist and gave my word that John would never go to that institution or medic again. I kept my word. John was, thankfully, then properly looked after by a great team of professionals who still review and assess all aspects of his life, in particular his medication, which controls his mood.
John is now 49 years old and lives in a hostel for vulnerable adults, where he is happy. The hostel is run by a woman who is very capable and enlightened and who understands her residents' individuality as well as managing their safety. John can come and go when he pleases and can frequently be seen in the coffee shop or the local pub, where he has an orange juice whilst listening to the jukebox. The hostel is in a village at the edge of town where people have known him for 15 years and he considers it home. He has come to terms with his handicap. He understands that he needs some assistance with daily life and routines. He understands that it may be difficult for him to marry as he would struggle with the practicalities of having a wife, but we never take away his hope. His hope is that one day he will have a place of his own. I will never take away that hope but I do tell him it is unlikely.
When he comes to stay with me for the weekend he now holds my hand for a fleeting second, tells me that he loves me, and says that he misses Mum but that I have taken her place. He loves the bedroom on the third floor of our house where he can look out at aerials while listening to 60s music.
A few years ago, he had a special 40th birthday where he gave a speech of thanks to everyone and sang with a friend accompanying him on guitar. He was amazing. Dad, who never really accepted him or understood, cried.
I have just given you a snapshot of our journey with John. When I would meet people who did not know about his condition, I would always introduce him as my special brother, so that they could be alerted early to save any potential embarrassment. John said to me, "Why do you say that? We are all special, aren't we?" So I now introduce him simply as my brother, John.
The important message that I would like to convey is that John has developed so much emotionally and continues to develop and learn - we don't know what his limits are. Once I fully accepted John for the wonderful person that he really is and stopped worrying about other people's issues with him, we started to enjoy life more. Society now is much more accepting. For example, buying clothes for John used to be a nightmare - he hates it. But in the last few years staff in shops have been fantastic and so helpful, particularly the younger ones - things just keep getting better. As a family we have faced considerable adversity but we have also been lucky, with excellent support from some professionals and good people along the way. I am privileged to have John as my brother and I love him very deeply.
By Jacquie
Super Mom: Mother and Teacher
Her son's autism led Yarisa Echevarría to open a specialized school.
By JENNY MERO and produced by ASTRID RODRIGUES
Yarisa Echevarría, 31, sometimes feels like someone has kidnapped her son, Joseph. Without warning, he went from a high-spirited and intellectually curious 18-month-old to a child she couldn't recognize. Hints of Joseph's once affectionate demeanor, infectious laughter, and even his growing vocabulary were gone. Worse yet, he stopped responding to his name. After months of pushing the pediatrician for testing, the culprit had a name: Autism. Joseph was diagnosed with mild to severe autism. "The hardest moment is when they tell you that something is wrong with your child, and this is it," says Echevarría.
Unlike a cold, a fever, or even depression, there is no medication for autism. In fact, little is known about the causes of the developmental disorder. Parents will talk about the anguish of trying to get through to their autistic children, who often stop interacting, communicating, and learning. In some instances the signs can be even more dramatic: children rock or flap their hands for hours. And, autism isn't something children outgrow. In severe cases, the disorder keeps them from ever becoming fully functioning adults.
Determined to give Joseph a fighting chance at a normal life—which is possible—Echevarría sought help from specialists. At times, she'd intervene and supplement his lessons when she saw he wasn't making progress. Anxious to help him understand concepts, Echevarría would sometimes find herself galloping on the floor so he could make the connection to the horse on the index card.
Then two years ago, she took that determination a step further, leaving her job in finance to get formally trained to work with Joseph's autism. Echevarría hoped this would help Joseph. And when she hit a wall when she was looking for adequate summer programs and other professional resources, Echevarría simply decided to start her own with the help of one of Joseph's teachers.
After seven months of working tirelessly to establish the non-profit, securing an affordable space, hiring teachers, Echevarría opened Learning Links (now a full-fledged school that goes up to second grade) last June. Though most of the 15 students are Hispanic, a reflection of their Miami surroundings, not all have developmental disorders. Because the goal of the school is to eventually trickle the students back into a regular, age-appropriate classroom, the curriculum is set up in a way that makes the program beneficial for any learner. For example, if a student has mastered the art of cutting paper with scissors and another hasn't, one can teach the other. Rosie Perez, a parent of a daughter with no known developmental issues and a son with Fragile X Syndrome, was simply delighted that she could send both to the same summer camp. Amazed at the progress both children made—and that her son, who often cried when left, was now waving her goodbye—convinced her to switch him to the school. "Yarisa is doing this for her son, but she's helping out so many parents in the process," says Perez. "It's that kind of emotional tie that's missing from many of the programs."
By JENNY MERO and produced by ASTRID RODRIGUES
Yarisa Echevarría, 31, sometimes feels like someone has kidnapped her son, Joseph. Without warning, he went from a high-spirited and intellectually curious 18-month-old to a child she couldn't recognize. Hints of Joseph's once affectionate demeanor, infectious laughter, and even his growing vocabulary were gone. Worse yet, he stopped responding to his name. After months of pushing the pediatrician for testing, the culprit had a name: Autism. Joseph was diagnosed with mild to severe autism. "The hardest moment is when they tell you that something is wrong with your child, and this is it," says Echevarría.
Unlike a cold, a fever, or even depression, there is no medication for autism. In fact, little is known about the causes of the developmental disorder. Parents will talk about the anguish of trying to get through to their autistic children, who often stop interacting, communicating, and learning. In some instances the signs can be even more dramatic: children rock or flap their hands for hours. And, autism isn't something children outgrow. In severe cases, the disorder keeps them from ever becoming fully functioning adults.
Determined to give Joseph a fighting chance at a normal life—which is possible—Echevarría sought help from specialists. At times, she'd intervene and supplement his lessons when she saw he wasn't making progress. Anxious to help him understand concepts, Echevarría would sometimes find herself galloping on the floor so he could make the connection to the horse on the index card.
Then two years ago, she took that determination a step further, leaving her job in finance to get formally trained to work with Joseph's autism. Echevarría hoped this would help Joseph. And when she hit a wall when she was looking for adequate summer programs and other professional resources, Echevarría simply decided to start her own with the help of one of Joseph's teachers.
After seven months of working tirelessly to establish the non-profit, securing an affordable space, hiring teachers, Echevarría opened Learning Links (now a full-fledged school that goes up to second grade) last June. Though most of the 15 students are Hispanic, a reflection of their Miami surroundings, not all have developmental disorders. Because the goal of the school is to eventually trickle the students back into a regular, age-appropriate classroom, the curriculum is set up in a way that makes the program beneficial for any learner. For example, if a student has mastered the art of cutting paper with scissors and another hasn't, one can teach the other. Rosie Perez, a parent of a daughter with no known developmental issues and a son with Fragile X Syndrome, was simply delighted that she could send both to the same summer camp. Amazed at the progress both children made—and that her son, who often cried when left, was now waving her goodbye—convinced her to switch him to the school. "Yarisa is doing this for her son, but she's helping out so many parents in the process," says Perez. "It's that kind of emotional tie that's missing from many of the programs."
Grandfather builds Web browser for autistic boy
John LeSieur is in the software business, so he took particular interest when computers seemed mostly useless to his 6-year-old grandson, Zackary. The boy has autism, and the whirlwind of options presented by PCs so confounded him that he threw the mouse in frustration.
LeSieur tried to find online tools that could guide autistic children around the Web, but he couldn't find anything satisfactory. So he had one built, named it the Zac Browser For Autistic Children in honor of his grandson, and is making it available to anyone for free.
LeSieur's quest is a reminder that while the Web has created important communication and educational opportunities for some people with cognitive impairments, computers can also introduce new headaches for families trying to navigate the contours of disability.
The Zac Browser greatly simplifies the experience of using a computer. It seals off most Web sites from view, to block violent, sexual or otherwise adult-themed material. Instead it presents a hand-picked slate of choices from free, public Web sites, with an emphasis on educational games, music, videos and visually entertaining images, like a virtual aquarium.
Other programs for children already offer that "walled garden" approach to the Web. But LeSieur's browser aims to go further: It essentially takes over the computer and reduces the controls available for children like Zackary, who finds too many choices overwhelming.
For example, the Zac Browser disables extraneous keyboard buttons like "Print Screen" and turns off the right button on the mouse. That eliminates commands most children don't need anyway, and it reduces the chance an autistic child will lose confidence after making a counterproductive click.
Children using the Zac Browser select activities by clicking on bigger-than-normal icons, like a soccer ball for games and a stack of books for "stories." The Zac Browser also configures the view so no advertisements or other flashing distractions appear.
"We're trying to avoid aggressive or very dark or complicated Web sites, because it's all about self-esteem," LeSieur said from Las Vegas, where he lives. "If they're not under control, they will get easily frustrated."
Autism generally affects a person's ability to communicate, and Zackary doesn't speak much. But his mother, Emmanuelle Villeneuve, reports that the boy can start the Zac Browser himself. He enjoys listening to music through the program and trying puzzles - things he always liked before but hadn't been able to explore online, she said from her family's home in suburban Montreal.
Perhaps most tellingly, while he still acts out aggressively against the TV, she said, he doesn't try to harm the computer.
LeSieur didn't create the browser by consulting with people who are considered experts in disorders on the autism spectrum. The small software company he runs, People CD Inc., essentially designed the Zac Browser to meet Zackary's needs, and figured that the approach would likely help other autistic children. Early reviews have been positive, though LeSieur plans to tweak the program so parents can suggest new content to add.
Several autism experts were pleased to hear of LeSieur's work, and not surprised that he had not previously found anything suitable for Zackary.
After all, the autism spectrum is so wide that a particular pattern of abilities or impairments experienced by one autistic person might be reversed in another. In other words, creating software that would work for huge swaths of autistic children is a tall order.
Indeed, the Zac Browser might do nothing for another autistic child.
That said, however, LeSieur's approach of limiting distractions and using the software as a confidence-boosting tool "is a very good idea," said Dianne Zager, director of the Center for Teaching and Research in Autism at Pace University. She said many autistic students tend to do best with educational materials that make unnecessary stimuli fade from view.
"Some parts of the Web have so much extraneous material that it can be distracting, and for the nonverbal child, there might not be an ability to negotiate that information," added Stephen Sheinkopf, an autism researcher at Brown University.
This is not to say the Web is necessarily barren for autistic children. James Ball, an autism-education consultant in New Jersey, said many children he works with enjoy Webkinz, where kids care for virtual pets. Others find chat rooms and instant-messaging a lower-anxiety way of socializing than talking to someone in person, he said.
But the Zac Browser might turn out to be the rare tool that can be configured to strike a chord with a wide range of autistic students, said Chris Vacek, chief innovation officer at Heartspring, a special-education center in Wichita, Kan. Vacek is considering using the Zac Browser at Heartspring.
One huge advantage is that the browser is free, while many assistive technologies cost upward of $5,000 and work only on specialized devices. But Vacek, himself a parent of an autistic child, said the Zac Browser's best credential is that it appears to pass what he calls Heartspring's "acid test": It has a high chance of increasing a child's ability to do things independently.
"Let's hear it for grassroots innovation," Vacek said.
LeSieur tried to find online tools that could guide autistic children around the Web, but he couldn't find anything satisfactory. So he had one built, named it the Zac Browser For Autistic Children in honor of his grandson, and is making it available to anyone for free.
LeSieur's quest is a reminder that while the Web has created important communication and educational opportunities for some people with cognitive impairments, computers can also introduce new headaches for families trying to navigate the contours of disability.
The Zac Browser greatly simplifies the experience of using a computer. It seals off most Web sites from view, to block violent, sexual or otherwise adult-themed material. Instead it presents a hand-picked slate of choices from free, public Web sites, with an emphasis on educational games, music, videos and visually entertaining images, like a virtual aquarium.
Other programs for children already offer that "walled garden" approach to the Web. But LeSieur's browser aims to go further: It essentially takes over the computer and reduces the controls available for children like Zackary, who finds too many choices overwhelming.
For example, the Zac Browser disables extraneous keyboard buttons like "Print Screen" and turns off the right button on the mouse. That eliminates commands most children don't need anyway, and it reduces the chance an autistic child will lose confidence after making a counterproductive click.
Children using the Zac Browser select activities by clicking on bigger-than-normal icons, like a soccer ball for games and a stack of books for "stories." The Zac Browser also configures the view so no advertisements or other flashing distractions appear.
"We're trying to avoid aggressive or very dark or complicated Web sites, because it's all about self-esteem," LeSieur said from Las Vegas, where he lives. "If they're not under control, they will get easily frustrated."
Autism generally affects a person's ability to communicate, and Zackary doesn't speak much. But his mother, Emmanuelle Villeneuve, reports that the boy can start the Zac Browser himself. He enjoys listening to music through the program and trying puzzles - things he always liked before but hadn't been able to explore online, she said from her family's home in suburban Montreal.
Perhaps most tellingly, while he still acts out aggressively against the TV, she said, he doesn't try to harm the computer.
LeSieur didn't create the browser by consulting with people who are considered experts in disorders on the autism spectrum. The small software company he runs, People CD Inc., essentially designed the Zac Browser to meet Zackary's needs, and figured that the approach would likely help other autistic children. Early reviews have been positive, though LeSieur plans to tweak the program so parents can suggest new content to add.
Several autism experts were pleased to hear of LeSieur's work, and not surprised that he had not previously found anything suitable for Zackary.
After all, the autism spectrum is so wide that a particular pattern of abilities or impairments experienced by one autistic person might be reversed in another. In other words, creating software that would work for huge swaths of autistic children is a tall order.
Indeed, the Zac Browser might do nothing for another autistic child.
That said, however, LeSieur's approach of limiting distractions and using the software as a confidence-boosting tool "is a very good idea," said Dianne Zager, director of the Center for Teaching and Research in Autism at Pace University. She said many autistic students tend to do best with educational materials that make unnecessary stimuli fade from view.
"Some parts of the Web have so much extraneous material that it can be distracting, and for the nonverbal child, there might not be an ability to negotiate that information," added Stephen Sheinkopf, an autism researcher at Brown University.
This is not to say the Web is necessarily barren for autistic children. James Ball, an autism-education consultant in New Jersey, said many children he works with enjoy Webkinz, where kids care for virtual pets. Others find chat rooms and instant-messaging a lower-anxiety way of socializing than talking to someone in person, he said.
But the Zac Browser might turn out to be the rare tool that can be configured to strike a chord with a wide range of autistic students, said Chris Vacek, chief innovation officer at Heartspring, a special-education center in Wichita, Kan. Vacek is considering using the Zac Browser at Heartspring.
One huge advantage is that the browser is free, while many assistive technologies cost upward of $5,000 and work only on specialized devices. But Vacek, himself a parent of an autistic child, said the Zac Browser's best credential is that it appears to pass what he calls Heartspring's "acid test": It has a high chance of increasing a child's ability to do things independently.
"Let's hear it for grassroots innovation," Vacek said.
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