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News- Page 11
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Personal Stories : If only he could call Dad
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Posted by Sylvia on Wednesday, January 07, 2004 (08:19:13)
The Straits Times - Asia
By Clarence Chang
I have only one simple wish for 2004 - to hear my autistic son say 'Daddy' for the first time. It will be music to my ears.
MY NEW YEAR morning started off literally with a bang - of the sickening variety.
The kind of bang that makes a parent's heart skip several beats as your child's life flashes ominously before your eyes.
Barely eight hours into 2004, a wooden closet door in my children's bedroom came off suddenly, and came crashing down onto my younger son's cradle.
I let out a silent scream, rushed in in a state of panic, and then heaved a huge sigh of relief.
He's at my parents' place, remember? It's okay. Jason's not here. Thank God. Calm down. He's not hurt.
As I regained my composure and bent over to move the door, which at about 40kg, was more than twice my son's weight, I remembered something a friend in university once asked me, which stumped me at the time.
'What is your greatest fear in life?'
Now, after becoming a father twice over, there can only be one answer. Losing my two sons. That will forever remain my worst nightmare.
Whatever imperfections our kids may have (autism, cerebral palsy, physical disabilities, you name it), whatever label society attaches to them (spastic, retarded, handicapped, stupid), any parent would gladly take his child's place and be crushed by a falling door.
Just ask any recent first-time Dad, even if they're celebrities like Russell Crowe, David Letterman, Sheikh Haikel or Khoo Swee Chiow.
It always puts a smile on my face to see these guys shed their tough macho image and gush endlessly about their babies, late-night diaper adventures included.
The unwelcome New Year shock aside, on a much happier note, the next day, I found myself, like tens of thousands of other parents around the island, beaming with pride as I watched Joshua, my six-year-old, cross a milestone in life. He started Primary 1.
It was the same day Jason, who turns five next month, was also supposed to have started his first day in kindergarten. Instead, he crossed his own milestone of sorts.
For the first time, he sat quietly in a barber's chair as the hairdresser snipped away - no crying his eyes out, no violent struggles, no adult caregiver having to restrain him or hold his head steady.
Unless you're the parent of an intellectually disabled child, you're probably wondering what all the fuss is about.
A toddler, almost five, and he's never sat still during a haircut? Well, that's right.
He still sleeps in his trusty old cradle or sarong, something he's done since he was three months old. He still wears diapers, as toilet training is a skill yet to be mastered.
He still bites his clothes and toys, spins his body around when he's happy, throws his potato chips in the air when he's not, and fidgets and screams without warning when he's in unfamiliar surroundings - whether it's in a car or during a restaurant meal and a trip to the supermarket and, yes, until this week, the barber.
He still needs help with everyday tasks like feeding, bathing and changing.
Babblings aside, he's yet to speak his first word.
In fact, when he was first diagnosed at the age of two, the usual parental shock-sadness-guilt-disappointment trepidation seeped in.
How did he end up this way? Why didn't we know sooner? Couldn't this have been prevented? Was it something we did? Can he grow up as a normal child? What if we plan to have more kids? Will they be affected too?
In short, we were speaking as outsiders looking in. Outsiders who knew close to nothing about autism ('Doesn't it have something to do with Dustin Hoffman's title character in Rain Man?').
But now, speaking as a gushing parent many years down the road, my little one's been nothing but a bundle of joy.
He's taught me the true meaning of a smile, at that heavenly moment when our eyes connect.
I appreciate the simple pleasure of giving and receiving a high five, as well as the utter thrill when he recognises his name and turns his head to the sound of my voice.
He's also given me the courage to confront my deepest fears - each time a voice inside or outside me questions my ability to raise him to fulfil his potential as a special person with special needs.
So, in the true spirit of Auld Lang Syne, my must-do New Year list revolves around my little blessing.
I will stop hiding him from the world and from the cold stares of strangers.
I will accompany him to his first movie and be prepared to walk out midway if he acts up.
I will take him on holiday even if it involves a short-haul flight.
I will mean it when I say 'it's okay' every time someone finds out about his condition and goes, 'oh, I'm so sorry'.
Because it really IS okay, and there's nothing to be sorry about. Really.
Heck, I might even get over my hang-ups involving his schooling options and therapy arrangements.
And about time, too.
Most of all, I will cling on to the hope that before the year is through, I will get to hear his voice finally.
His real voice, uttering the sweetest words to come out of a child's mouth - 'hello', 'goodbye', 'thank you', 'happy new year', or all of the above.
And dare I wish it, 'Daddy'.
Every syllable will be music to my ears.
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Personal Stories : Life with autistic children
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Posted by Sylvia on Tuesday, December 02, 2003 (02:21:06)
by Anne
It is hard enough having one handicapped child in the family let alone three. When I first learned of my sons autism through my own realization I sought out a diagnosis from a noted psychiatrist in my area. The school district I was in at the time required a diagnosis if Brodie was going to get the help he needed.
It was very difficult for me. I went through the battery of enzyme tests and blood tests(well Brodie did) We had him tested for fragile x also. This is the first thing they test for by the way. Finnally we got him into the school he needed to be in and he excelled there.
My daughter Jessica always had a learning disability but we weren't sure what it was. She had quite a few surgeries when she was little due to cardiac problems at birth.
Looking back on baby pictures, Jessica looked like a down syndrome baby. I didn't see it then. Jessica has had behavior problems that have really thrown us for a loop. She started running away 1 year ago and the last time they had the dogs out looking for her. They would have found her if she hadn't gotten into someone's car. Jess is very high functioning and is very good at manipulating people.
It was very cold that night and I was very worried. I stayed home that night and waited while my husband and the police were out looking for her. My parents and sister joined the search also. I was so angry because I told them where to look, a mother knows. They would not listen to me. Instead they concentrated their search around the school where she fled from.
The police did not find her that night. A woman at a McDonalds overheard Jessica telling some kids she ran away, so she looked in her bookbag for information on her and found our phone number. I never met this woman to thank her, Jess was surrounded by police by the time I got there having alerted them when I got the phone call.
Of course police are not trained to know what autism is and were hanging on her every word. It was 10:30 at night and Jessica had been missing since 2:45. I can't tell you the agony I went through. At first I was angry with her, then as time went on I became very worried.
*We have deadbolt locks on our doors that can only be opened with a key AND an alarm now. If you have a child that wanders, please install at least the deadbolts.*
There is a funny story about Brodie. He used to get up in the am very early and of course he was naked. He would take it upon himself to go out for an early morning walk. I laugh about it now but it wasn't funny then. Autistic children can be very good escape artists if you don't keep on top of them.
One morning at 6 am I was awakened by my daughter screaming "Brodie is outside and he's naked" There he was, walking down the street naked carrying a can of orange pop. At least the neighbors were not up yet.
Brandon was a different story. I thought he was my normal child when I had him. I thought finally I have one normal child, I only wanted one. Well when he was 15 months old he was diagnosed with pervasive developmental disorder. What a blow that was. I kept asking what was wrong with me?
After my kids were diagnosed I found out that my ex-husbands family has several people with autism. My ex-husbands sister for one and now I think that my ex-husband has some form of it.
Just because you have autistic children does not mean you or your husband have the disorder in any form. Autism is basically a bunch of symptoms with many different causes. I believe the majority of my childrens problems come from a genetic link from my ex-husbands side of the family.
Some people have reactions to vaccines. The vaccines MAY have been a factor where Brodie is concerned. After he received his MMR he had very high fevers of 106 degrees. It was alarming but since he was playing throughout the fever his doctor wasn't worried.
I think he may have been injured by the vaccines but I will never know for sure. He is improving now, and next time he needs an MMR he will be watched closely. The important thing is that you do everything possible for your children. I love mine very much and even though three of them have autism I wouldn't have them any other way.
My daughter Kimi is 3 years old now and she is doing very well. I don't see a hint of any learning disability. She is so smart and will often "supervise" the boys. She has three dogs also that constantly watch over her. It is funny at times I think she thinks she is a dog. We have an Esquimaux dog who acts like her mama.
Having children with autism is very difficult, especially if you are a single mother. Forget having a having a life of any kind. My children have scared away a few good men but hey, they probably weren't that good to begin with.
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Personal Stories : The story of Jacob's art - Part II
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Posted by Sylvia on Saturday, November 22, 2003 (15:44:19)
written by Diane Bayer
The hiding of talents and skills was part of Jacob's daily routine. As with
many children with autism, Jacob had/has peaks and valleys of knowledge and
skills. As soon as he turned age two he was able to recite the alphabet.
However, he still had very little words and most noteably excluded from his limited
verbal repetoire was the names for people. He was able to recite the
alphabet and numbers but he was not able to call for me. The pain of not having my
child be able to look me in the eyes and connect...nor to call out my name when
he was in pain or in trouble, was excruciatingly painful.
I did want those
things but felt that perhaps in time I would be given those gifts. In the
meantime I wanted to understand the gifts that he did bring to the table, even if
unwillingly.
When Jacob first recited the alphabet I caught him doing so to himself while
facing the door to his closet. He would not do it in our prescence as though
doing so would break some sort of spell.
Then one day he tentatively
approached me as I was sitting and burrowed his face into my lap and began his
recitations. He couldn't bear to look at me whilst he did it. That would be too
much exposure.
I never really knew what he actually did know and what he didn't know. I
never knew what desires he had as he could not articulate them and he seemed to
want for nothing. If there was something in his environment which he did not
like he would simply shut down to it. He would tune it out completely with his
facial features glazing over or he would fall asleep.
I felt like a
detective always pondering over clues to give me some anchor to know what may lie
inside my child. I had envy for those parents who were given an overabundance of
gifts of self from their children with the "LOOK AT ME"s and the "MOMMY LOOK
WHAT I DID!" revelations. I would receive no such declarations of self.
The
unspoken message I would read from Jacob was the polar opposite of "please
don't look at me" or "go away because connection is too painful for me" If I
had but one thread of a string to pull him towards me, however weakly, I would
seize it and be grateful.
I had been reading more and more of this Siege book and the parent/author had
described her daughter Ellie as having these same traits as I was seeing in
Jacob: The hiding hiding of talents and skills, the shrinking away, the
wariness. It was all there. One portion of the book was of particular interest to
me. The author described how her daughter seemingly refused to copy a simple
circle. The mother intuited that perhaps the risk of exposure was the thing
which was preventing her daughter from showing this skill.
She would not
consistently imitate drawing the circle when the mother was present to watch. So
mom drew a circle and then she left her daughter alone...with the piece of
paper and the circle and a pencil. Mom left and when she came back...there was a
second circle on the paper. I was amazed by this story and most intrigued.
I doubted whether or not this would happen for Jacob in this manner because
it just seemed impossible. Jacob had shown no interest in drawing whatsoever.
He did not even pick up a crayon but once. I had the proof of his endeavors
mounted above his crib.
I labeled it "blue" because it was all this blue
scribbling covering up a sheet of construction paper. It was his first and only
"drawing" Jacob, at the time of my little experiment, was four years and three
months old. Since the time of *blue* he had not drawn anything since.
Developmentally, this imitation of drawing shapes is a marker for cognitive
development. I was worried about his mental capacity since he had failed this test
of imitation. I was focusing heavily upon what he did not show and what i felt
he could not do. I did not want to believe that he was as limited as some of
the tests would show. And in fact he was not but he was not about to show
that readily.
Armed with paper and pencil in hand, I drew four circles on a sheet of paper.
I shook my head negatively, thinking that there was no chance that Jacob
would understand or even care to oblige me by drawing another circle. My heart
was racing a bit as I prepared myself to be dissapointed. I gave the paper to
him while he was sitting in the big easy chair, his small legs dangling, not
reaching the floor. I placed the pencil beside him and gave him the directions
of drawing another circle. I left him...closing my eyes and waiting for
about three minutes...was all I could stand.
I came back..and he was still
sitting there staring and making babbling sounds as though he had not looked at all
at the paper. My heart was sinking some until I looked. And there it
was...my hope....that fifth circle was there. I just about cried. I swooped him up
like some Tiny Tim and I hugged up his resisting body. I am sure he was
unaware of the meaning of his small but magnificent gesture.
He could draw the damn circle.
Of course I had to run more of my *experiments* and so I then followed up
with drawing a simple face. I drew a simple simely face with two dots for eyes,
one dot for a nose and a curvy line for the smile. I laid the paper next to
Jacob with pen...and walked away. This time I would really be given a surprise.
I came back and he had outdone me. He did not simply imitate. The face he
had drawn had detail. It had hair and some sort of glasses. I had no idea.
I told him mock scoldingly..."you stinker! you know how to draw!" He had no
reason previously to desire to draw, I surmised. Or he simply did not want to
show us.
I am no artist by nature so what Jacob would then draw after those glorious
moments, was more than astounding. The crayons and paper were all of a sudden
being used and with such passion. He began to draw. And boy did he draw. A
whole new world opened up for him and through the drawings I had that
thread...which was becoming more like a rope...to pull myself towards him and he
towards me. He could draw what he was feeling and experiencing inside.
And then I
realized how much was in there inside him. He still hid, of course, as he
still does at age seven. He did not want to share the drawings whatsoever. He
would rip them up as soon as he would finish as to defy us to grant him any
attention for his talents.
Still to this day he crumples up his art...a mass of paper always greets me
each day upon the floor. Its all about the process for him. He will now keep
some of this finished "products" but only for a short time before he decides
to dispose of them. I rush in to save them before he catches me and gives me a
glare.
Jacob's drawings are remarkable for a number of reasons. One remarkable
feature is that they are technically savvy. Jacob understood perspective from the
get go. He was able to include perspective without ever being taught. It
came to him instinctively. The interesting aspect to this is that he is able to
draw only certain things with such precise measure. Objects are his best
subjects and buildings. They are exact and with such clean clear lines.
People,
however, are more difficult and I suspect that they are because they are so
ambiguous...always changing forms, facial expressions, and body language. His
drawings of people are congruent with the talents of those of his age. The
landscapes, and trains, and buildings are congruent with the skills of someone
much older.
A second astounding feature of Jacob's art work is that they fly in the face
of stereotypes about autism. The stereotypes perpetuated about people with
autism include that they lack emotion and feelings. They are also supposed to
be lacking in imagination. I would defy anyone looking at Jacob's artwork to
not see these elements present. I was delighted to find that Jacob had an
extraordinary sense of people and their emotions.
He was able to read people even
when we thought he was unaware. He may not show his awareness nor speak of
it...but he is drawing it. I was/am so glad to have this *evidence* of this
psychological and emotional capacity. And imagination is the fodder for all his
drawings. I know that in his mind he has so many visualizations running
through his head.
The richness and details of the pictures in his head probably
surpass any words he can find to talk about them. Who wouldn't want to spend
time in this wonderfully visual world of his. With his art...we can see a
piece of his world and it is beautiful and enticing indeed. He is like a little
siren calling to us...with these drawings.
The best thing about the art for me...as his parent...is that I get to see
raw passion. So many people don't have passion in their lives. The world is
just an endless shade of grey. As "disabled" as my son may appear, he is happy.
He enjoys his gift. He has discovered his gift early so that it will be
there for his whole life. He has something that makes him smile. And I am so
grateful that he can experience his passion. The drawing is a gift.
And Jacob...is a gift...to me.
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Personal Stories : The story of Jacob's art - Part I
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Posted by Sylvia on Saturday, November 22, 2003 (15:34:33)
written by Diane Bayer
Jacob had gotten his diagnosis of autism when he had just turned three years
old. I was attempting to come to grips with what this meant for him, for us
as a family, and for the future. It all seemed incomprehensible at the time.
It was as though we had been living some great lie.
I wondered where the
child was that was in my mind's eye....the one who would yell out "mommy", would
fight with his brother, and would pick me dandilion flowers for a bouquet.
These had been but fleeting images in my mind of expectations of how he would
grow and develop as any other boy.
But he was not like any other boy. Jacob was different. And I sensed this
from the start. When he was a baby I would look at him and think to
myself.."he is seeing the world in a different way than anyone else."
I would look into
his baby blues and search him for what was inside. What glimpse of the world
did he see that nobody else did. I instinctively wanted to join him in his
view of the world as it seemed a particularly rosy perspective.
His giggle as a toddler was so infectious like some drunken elf on a binge.
Yet..the cause for his laugher was not so evident. The fits of giggles arose
out of nowhere and the crying and screaming could flash up within moments of
the laughter. And in between he would look so pensive. There was a wariness
there...but more than that...something unidentifiable.
And then when he would stare and look through me I knew for the first time
that something was tangibly different about Jacob. The stare reminded me of
someone who was mentally ill. It was the most cutting pain of all to see this
look on my cherub's face. It simply was not right. I didn't think I could bear
it.
But I did learn to bear it and especially after the "differentness" was given
a name. The big scary "A" word. Autism.
There was a long period of cognitive dissonance where I had to re-frame
everything I had thought I had known. It was like having the picture of one puzzle
and then someone telling you...no...that is the wrong picture for that
puzzle. You had thought you were putting together a puzzle of a picture of a bowl
of fruit and the picture really was of wildflowers. You never knew what you
were really looking at.
And then there were times I thought that some of the
pieces were missing and I wondered if we would ever find them. I began to focus
on those missing pieces to the exclusion of looking at what pieces were there
ready to be placed into the frame.
It was this focus on what was missing which led me to make the discovery of
one of Jacob's most precious gifts.
I had been reading a book. It is my most favorite book about the experience
of a parent who has a child with autism. It is called, The Siege by Clara
Claiborne Park. I had read this book as one of the first of many I would read
about the topic of autism. I remember being all huddled up in bed...a silent
house...and reading this book voraciously. I wanted to know. I wanted to know
the worst of it. I wanted to impale myself upon the pain. Yet I was also
looking for hope.
Reading that book, I did get a glimpse of how it might be for
us. I compared and contrasted my child, with the child described in the book
and there were striking similarities.
The author described her child as one who would hide herself. Quite simply,
this little girl would not put her cards completely on the table. I
immediately could identify this quality in Jacob. I could always tell that there were
great sparks within my son but he would fight to not let those be seen. He
kept his power by keeping those to himself. There was no malintent upon his
part in doing so. It was just that seeing him in all his glory would bring a
type of psychic pain to his being. He would be exposed.
I surmised that it
would be like someone shining a strong light into one's eyes upon being
interrogated. One would instinctively want to shield their eyes and cover up to prevent
themselves from being blinded. Psychological exposure would bring him that
sort of pain.
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Personal Stories : A Brief Glimpse into the Life of Dr. Kiyo Kitahara
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Posted by duane on Thursday, November 20, 2003 (17:12:32)
"Within every living child exists its most precious bud of self-identity.
To search this out and foster it with loving care;
that is the essence of education of the autistic child."
- Dr. Kiyo Kitahara (1925-1989)
(English translation)
In 1925 Kiyo Kitahara was born in Nikko, Japan, where nature was abundant with beautiful water and majestic mountains.
Kiyo was born to a gentle mother and a father who earned his living as an engineer at a copper refinery, but whose first love was composing Haiku poetry. Kiyo helped with her brothers and sisters from an early age, since her mother was often sick.
At the age of fifteen, she began to work at the nearby elementary school. One year later, she passed the national eligibility test and became a teacher. This was considered an extraordinary achievement because of her young age. (left: Kitahara at the age of 16, right: Kitahara with her students in Nikko, Japan)
Kiyo's passion for teaching soared, especially when she had students who could not succeed in the classes. She went to the students' homes to teach whenever there was a need, since she felt so responsible for them. She blamed herself if some of her little students failed to learn. Because there was no special education, her classes also included handicapped students, whom she taught and cared for without discrimination.
At the age of twenty-six Kiyo came to Tokyo planning to study art, as she dreamed of becoming an artist. Instead, she taught at an elementary school during the day and went to a university to study law at night. She absorbed what she learned with great zeal.
Kiyo then married Katsuhei Kitahara and became the wife of a factory owner, raising three children.
In 1964, Kiyo Kitahara and her husband decided to close the factory and establish a kindergarten, because they knew there was a great need and because she was eager to teach children again.
As principal, Kiyo found a boy with very strange behaviors among the children who applied for the kindergarten. She knew nothing about his problem, but why refuse his entry? She saw that his eyes were as clear as the sky and she wanted to help him. This was the beginning of her encounter with "autistic" children, as she later learned they were called. Her struggle to help this child began by trial and error.
She brought him home out of sympathy for his mother, who had spent many sleepless nights. Kiyo spent days and nights with him trying to understand him and learning how to help him. As news of her acceptance of "problem" children spread, other children were brought to her by their weary mothers.
She never refused them, and loved, cared for and taught them as diligently as she did the typical children. Out of her struggle, her love, hope and confidence, she created an educational method for autistic children, later named Daily Life Therapy.
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