The current
issue of Kaleidoscope: Exploring the Experience of Disability through Literature
and the Fine Arts called Autism--A Life Apart, features a variety of poetry,
fiction, nonfiction, personal essays and art. Some of the work featured
includes the insightful poetry of Barbara Crooker, a mother of a child with
autism; the self-portraiture and works of fantasy by emerging artist William
Ferguson; and a personal essay by Elizabeth Trembley entitled Between His
Lines -- a lyrical account of an aunts relationship with her nephew who is
autistic and her openness to sharing his world.
Kaleidoscope
Magazine has a creative focus that examines the experiences of disability
through literature and the fine arts. Unique to the field of disability studies,
this award-winning publication expresses the experiences of disability from the
perspective of individuals, families, healthcare professionals, and society as a
whole. The material chosen for Kaleidoscope challenges and overcomes
stereotypical, patronizing, and sentimental attitudes about disability.
Samples of
work from several contributors to the magazine and a complete table of contents
are available by logging on the
www.udsakron.org/kaleidoscope.htm.
* * *
Why My Autism Is
A Gift
14-year-old has
written books about Aspergers syndrome
Luke Jackson
has Aspergers syndrome, a form of autism. While many consider it a disability,
Luke explains why he believes being different is a gift.
Hi, Im Luke
Jackson and Im 14 years old. I am a completely normal kid, apart from the
fact that I have Aspergers syndrome (AS), a mild form of Autism.
I was born
with it, and it may have come from another family member (here I tend to look
meaningfully at Mum) but I dont want to get into a discussion of genes and
causes at the moment.
One unusual
thing about me is that I have what some people would call a disability - but I
call a gift - Aspergers Syndrome Quote from Freaks,
Geeks and
Aspergers Syndrome - my book! I am often asked what its like
living with AS.
This is kind of a difficult question about something that youve had all your
life.
Its like
asking somebody what its like to be human (unless they arent human, in which
case they probably wouldnt answer, at least not in any human language).
You dont
know, because youve been like it all your life.
What is normal?
Before you
all walk off dejectedly, what I can tell you is what it feels like to live my
life.
I dont know
what normal is, but I know that people like me are the minority, not the
majority. So that, in our society, is what constitutes abnormal (rather
insulting I would say!).
Jacqui
Jackson has seven children - all four boys have a form of
autism Until I
was about nine years old, I thought everybody else was
weird. Maybe I was
right! Ever since I was - well, in fact, ever since I can remember - Ive known
that I was in someway different to everybody else.
In primary
school, when everyone was playing cops and robbers and soldiers, I always
wanted to sit on the wall and read, or scrutinize a blade of grass or spin
around in circles.
In secondary
school, while everyone is standing around and performing their teenage rituals
(what they are all about I really do not know!), I go to the computer room or
the library and enjoy time alone or with the greatest love of my life -
computers.
Bullying
Being
different may not be a problem for me, or other kids like me, but it sure seems
to cause problems for normal (ha!) kids. The result... bullying! I think there
is some amount of bullying going on at all times, in schools everywhere.
Some have it
worse than others, but all have it. I definitely had it, and it was very
painful at times.
Always
remember that different is cool!
A lot of
teachers and adults think it is part of growing up, but I have written my
books, talked at conferences and opened my life up on television just to let
everyone know that people with autism in any shape or form are just as entitled
to be themselves as anyone else in the world.
If others
would take time to stop and get to know us then they would see that we have a
lot to offer.
Yes, we may
get angry and frustrated at the world (particularly our parents!), but that is a
natural reaction to feeling like an outsider all of our lives and being
misunderstood.
All in all,
to all AS people and everyone reading this, always remember that different is
cool!
Lukes
film, My Family And Autism, will be broadcast on BBC Two on Wednesday, 30 July,
at 21:00 BST.
His book,
Freaks, Geeks and Aspergers Syndrome, is published by Jessica Kingsley.
Botulinum
toxin type A can successfully treat and correct toe walking Dr. David Roye said
at a seminar sponsored by the Childrens Hospital of New York.
Toe walking,
a form of limp characterized by a fixed contracture of the Achilles tendon, is
normal up to age 2 or 3 years. About 90% of cases resolve naturally, but many of
the remaining cases are treated with surgery. It is our impression that Botox
[botulinum toxin type A] will decrease by half the number of children who will
need surgery for their toe walking. However, there are no published data to
support how effective it will prove to be over time, said Dr. Roye of Columbia
University, New York.
Calling
Botox a remarkable drug, he explained that the usual course of treatment for
toe walking requires two or three injections into the calf area. The drug
relaxes the musculature in the back of the leg, allowing for a normal gait.
Some kids respond to just one injection.
The
injections have had no adverse effects to date in his patient population, Dr.
Roye said at the meeting, also sponsored by Columbia University. It is an
injection so kids do not like it, but basically the only adverse effect we have
seen is failure. That is, we do the injection, and it doesnt seem to lower the
tone of the muscle. About half of children with toe walking can be cured with
Botox in his experience.
Dr. Roye and
his colleagues at Childrens Hospital of New York-Presbyterian were inspired to
use Botox for general toe walking after first using the drug to treat the
disorder in children who also have cerebral palsy, the most common cause of this
type of limp. It seemed that the milder, [non-cerebral palsy] form of the
problem would be even more amenable to the treatment. As we gained experience,
it was clear that it is extremely safe.
If the child
cannot stand flat and the passive range of motion is limited, toe walking is not
normal and cannot be expected to resolve naturally. If asymmetry is present, toe
walking is not normal.
More studies
are needed on the effects of newer antiepileptic drugs on cognitive function,
according to a recent review from The Netherlands.
Memory
impairment, mental slowing, and attention deficits are common secondary effects
experienced by patients with epilepsy. In some patients, cognitive impairment
can be more debilitating than the associated seizures.
Some
antiepileptic drugs are effective in treating epileptic seizure activity, yet
exacerbate cognitive dysfunction. Newer drugs are needed with similar efficacy
in the treatment of both seizure activity and cognitive function.
Dr. Albert
P. Aldenkamp at the Epilepsy Centre Kempenhaeghe, Heeze, the Netherlands, and
colleagues in Heeze and Amsterdam, reviewed the effects of antiepileptic drugs
on cognitive function. The review consisted of data from randomised clinical
trials wherein AED monotherapy was used to treat patients with newly diagnosed
epilepsy.
Studies have
well-documented that all the common AEDs (i.e., valproate, carbamazepine,
phenytoin, phenobarbital) have mild to moderate effects on cognitive functions.
Furthermore, adverse cognitive effects appear to be worse with combinatorial
treatment.
Newer AEDs
appear to have similar efficacy and safety profiles to common AEDs; however
meta-analyses of effects on cognitive function are needed.
Some
evidence is available for lamotrigine, topiramate, and oxcarbazepine, yet
insufficient evidence has been presented for 3 newer AEDs, tiagabine,
gabapentin, and levetiracetam.
From
available studies, it has been concluded that oxcarbazepine and lamotrigine do
not affect cognitive function in healthy volunteers or in adults with newly
diagnosed epilepsy. Though, more studies are needed with regard to oxcarbazepine
treatment in children. Lamotrigine has also been suggested to help improve
memory, particularly in elderly patients with age-associated memory impairment.
In contrast,
topiramate has been found to affect cognitive function. Specifically, treatment
has adverse effects on attention and verbal function and language.
Due to the
lack of controlled studies of the newer AEDs, Dr. Aldenkamp advocates that much
more attention is warranted in drug development and in postmarketing evaluation
to establish the effect of drugs on behaviour.
Epilepsia
2003;44:4:21-29. Newer antiepileptic drugs and cognitive issues.
Campaigners
in the Midlands are urging the government to investigate how many unvaccinated
people have autism.
The MMR
Research Trust believes the study could prove whether the jabs are linked to a
potentially poisonous mercury compound called Thiomersal, found in vaccination
jabs.
The
Gloucestershire group claims it has conducted its own surveys and discovered
just one autistic person who had not received childhood inoculations.
Now it wants
the Department of Health to conduct wider research.
Around
500,000 UK families are currently affected by autism, a condition the Sunday
Mercury revealed last month could be linked to Thiomersal.
Tony
Bateson, director of the MMR Research Trust, said he wanted to see research into
the health of four million unvaccinated Britons born since 1966.
His daughter
Claire, now in her 30s, is profoundly autistic which he believes was a result of
her childhood exposure to Thiomersal contained in DTP (Diptheria, Tetanus and
Pertussis) vaccinations.
After three
years work looking into vaccines and their involvement with autism, we found
only one autistic child who had not been vaccinated, he said.
This is
despite the fact that there are about four million unvaccinated people in the
UK.
Parents of
autistic children often report an immediate adverse response of their child to
MMR.
The use of
the DTP vaccination prior to the MMR vaccination is no coincidence.
It is in
the nature of mercury poisoning that damage may be slow to develop and may be
unseen.
The vaccine
exploits this vulnerability to cause collateral long-term damage leading to
autism.
Thiomersal,
a compound 50 per cent composed of ethylmercury, is currently being phased out
in US paediatric vaccines, but the British government has refused to follow
suit. Ministers claim that there is no conclusive evidence to prove the
preservative causes autism.
Earlier this
month the Sunday Mercury reported on Coventry mum Claire Bothwells campaign to
stop the use of mercury in vaccines in the US, where she now lives.
The
mother-of-three is claiming compensation from the pharmaceutical companies who
produce Thiomersal, which is not used in MMR jabs but is found in other
childhood inoculations.
She claims
that the preservative caused two of her children to become autistic and has been
contacted by 2,000 families across the US with similar concerns.
A Department
of Health spokesman said: MMR remains the best way of protecting your child
from measles, mumps and rubella.
There never
has been evidence of a link between MMR and autism.
Our
priority is to give accurate information to parents that explains the real
benefits of MMR and describe for them the very few risks that could occur.
* * *
CARE
Former SC State
Senator Charged with Assaulting Autistic 9-year-old Boy Garrison backers rally
support
Pendleton
About 90 people endured 90 degree temperatures Monday to show their support for
former state Sen. T. Ed Garrison, days after he was charged with assaulting an
autistic 9-year-old boy at the Anderson YMCA.
Pat Evans of
Pendleton and her daughter Grace Ammons organized the event after they saw
reports of the incident on cable news channel CNN.
Something
just snapped, Ms. Ammons said.
Calling it
an unfortunate incident, Ms. Ammons blasted local media for what she called
their one-sided coverage of the event and said the real issue was the fact that
the 9-year-old boy, Xavier Garret, was not supervised.
Mr. Garrison
was in a water aerobics class at the Anderson YMCA on Friday when the incident
occurred. The police report states the boy was struck in the face and dunked in
the pool approximately twice, although Mr. Garrisons statement in the report
was that he only pushed the boy backward with his head going under the water
after the boy kicked him in the groin.
Ken Buchanan
of Anderson was also in the aerobics class and said he witnessed the incident.
He said Xavier kicked Mr. Garrison when he asked the boy to stop disrupting the
class.
(Mr.
Garrison) pushed him away underwater, dunked him a little bit, Mr. Buchanan
said. Hes not the little-bitty fellow that the paper shows, he weighs at least
150 pounds.
The police
report said Xavier weighed about 120 pounds and Mr. Garrison about 200 pounds.
He said
about 50 people were involved in the class, but only about seven people were in
Mr. Garrisons part of the pool when the incident happened. Mr. Buchanan said
Mr. Garrison just shoved the boy away, what he called a natural reaction to
being kicked.
Anderson
police Sgt. Mike Walters said in statements Friday that several witnesses who
were present at the YMCA pool gave statements to the contrary.
Dr. William
Hunter, a family practice doctor and grandfather of an autistic child, gave a
speech at the rally he called In defense of autism and Ed Garrison. He said
that autistic children look normal but that their behavior is unpredictable. He
said the whole situation could have been prevented if the child had proper
supervision. Others at the rally agreed.
I lay most
of the blame on the Y, said Sara Thornton of Anderson. An 81-year-old man
shouldnt have to cope with a 9-year-old child.
Billy
Rhodes, director of the Anderson YMCA, said he wouldnt comment on the situation
because he didnt want to disrupt an investigation. He said the YMCA did have a
policy on child supervision but did not elaborate.
We dont
want to cloud the issue in any way, he said.
Xaviers
father, Paul Garrett, who is also a principal at Crossroads Alternative School
in Elberton, said his son had a counselor with him and that she was the first
one to report the incident.
Most of the
people who attended the rally wanted to defend Mr. Garrisons character, saying
they could not imagine him wanting to hurt the child intentionally.
Jim Young of
Anderson graduated from high school with Mr. Garrison in 1938 and said he spoke
with Mr. Garrison on the phone Monday morning. The Garrisons did not attend the
rally.
He seems to
be befuddled by the whole thing, Mr. Young said. Maybe Ed owes an apology and
the parents of the child owe an apology. Seems to me a little forgiveness is in
order.
Mr. Garrett
said Friday that he doesnt feel he owes an apology to anyone.
We want to
see justice, Mr. Garrett said, adding that he has not heard an apology from Mr.
Garrison. I would feel the same way if this was something that happened to Mr.
Garrisons son.
Mr. Garrison
served as a Democrat in the House of Representatives and the Senate from 1959 to
1988. Clemson Universitys livestock arena bears his name.
Tenth
Circuit Assistant Solicitor Joy Davis said she will be prosecuting the case. She
said she has yet to see the case files and will have to conduct a complete
investigation before deciding how to proceed.
* * *
FUNDRAISING
With a Little Help
From Their Friends
Grace Foundations
programs provide a safe, comfortable, fun atmosphere for children with autism
The fans
didnt fill the bleachers. They didnt line the fence. The supporters of this
team were right on the field and in the dugout with their favorite ball players.
On Sunday
mornings this spring -- and well into the summer, thanks to record-breaking
rainfall -- children participating in the baseball program at the Grace
Foundation showed up to give their all on the field at Great Kills Little
League.
Try Our
Classifieds The Grace Foundations mission is to advocate for Staten Island and
Brooklyn families of children diagnosed with autistic spectrum disorders. Their
focus has been support and education, since its inception three years ago.
We focus on
three main areas -- recreation, parents support and education, said Joe
Gambale, director of the Foundation, which has a 21-member board of directors,
all of whom are volunteers.
Autism, a
developmental disability that typically appears in the first three years of
life, is a neurological disorder that affects the functioning of the brain.
According to the Centers for Disease Control and Prevention, as many as 2 to 6
in 1,000 people are affected.
According to
the Autism Society of America, characteristics of autism include resistance to
change; difficulty expressing needs, using gestures instead of words; laughing,
crying or showing distress for reasons not obvious to others; tantrums;
repetitive language; uneven motor skills; unresponsive; little or no eye
contact; prefers to be alone, and more. However, each autistic persons
characteristics are unique, the Society noted.
With special
needs and skills, playing an organized game or participating in organized events
presents special challenges. Thats where the Foundation comes in.
Parents and
siblings took the field with the players -- clad in baseball hats and T-shirts
-- to assist them with hitting, running the bases and coming into home plate.
Good
swing! cried Carlos Martinez of Rosebank, from behind home plate, encouraging
one of the youngsters at bat.
The
three-strikes-and-youre-out rule is suspended during the game, where the
children swing as often as it takes to make contact with the ball.
Basically,
its hitting and running, said Denise Purcell of Great Kills, whose son, Ryan,
9, has been playing for the last two or three years. They like it. I think its
good for them to be outside.
The
no-pressure game offers the children a chance to get out and have fun with their
peers.
Six-year-old
Domenic Caragiulo has been participating in the Foundations programs for the
last three years. In addition to baseball, where he likes to hit the ball and
run, he bowls and attends all of their special events.
I like to
see him have a good time, said his mother, Christine Caragiulo of Annadale.
Hes understood here. hes not criticized. The kids are great -- theyre all
really friendly.
The
environment that the Foundation has created for these types of events is
comfortable for the children.
When were
with the Grace Foundation, were amongst our peers, said Paul Oliveri of
Huguenot, whose son Larry, 11, has autism. You have to be thankful for the
program. This is our home away from home. This is great. No one makes fun of
them.
Watching his
two older sons play from the dugout, Oliveri, whose youngest child accompanied
him in a stroller, added that the parents in the organization also work wonders.
When we have problems, the parents brainstorm, he said.
Mrs.
Caragiulo concurred. The parents are very knowledgeable. If youre having a
problem, they can help you.
The
Foundation also sponsors an annual conference and Grace University, a series of
workshops and seminars, dealing with a spectrum of issues relative to autism,
Gambale said. Recreation programs include the little league, bowling, swimming,
yoga, fun and frolic and soon, soccer.
Support
groups for parents and siblings, socialization classes for children, summer camp
and a Boy Scout troop for autistic children round out the Foundations earliest
accomplishments. In addition, a $50,000 grant has been secured by Councilman
James Oddo for the creation of an autism center on the Island as well as to
develop a specialized reading program.
Its a
great organization, Oliveri said. Its a place where kids can be kids.
Jane Seymour and
Other Famous Artists are Donating...
[From the
Autism Autoimmunity Project.]
After
looking at how much NIH has given to autism research, its very apparent that
were on own, especially when it comes to the research that matters most.
In light of
this, weve planned a huge day-long event called Artism for Autism. Presented
by The Autism Autoimmunity Project, this art fundraiser is being supported by
the following world-recognized artists: - Actress Jane Seymour has donated a
piece worth $2000. Known more for her acting, Jane is also an extraordinary
artist whos had dozens of exhibitions in top galleries across the US.
- Georgie
Pocheptsov, the little-boy Picasso prodigy seen on Oprah and featured in media
throughout the world, has created a never- before-seen original for our event
worth $20,000. Hes also donating two signed prints of his earlier pieces done
at ages 3 and 4.
- Metin
Bereketli, known as the Hollywood Artist, has his work featured in such shows
as Friends, Will and Grace, ER, and many more. He has donated an original
painting worth $30,000, and several hand-signed prints.
- Michael
Israel will perform his brilliant art in concert LIVE at both the daytime and
nighttime events. This is one cool show. Michael paints on stage quickly to
music and is famous for his spinning canvas. Two of his paintings will be
auctioned after each event and some could go for as much as $10,000 each.
- Were the
second charitible organization to receive a Vatican- released and signed
duplication of Michelangelos Madonna Della Pieta which will start at $15,000
the night of the event. It comes with the Vatican seal and letter of
authenticity. The Madonna Della Pieta was the only sculpture ever signed by
Michelangelo.
- Many other
remarkable artists have donated including autistic children, adults, and parents
of autistic children. Other celebrity art will also be available.
Artism for
Autism will be held on Saturday, September 20th. The daytime event will start at
10:00 a.m. in downtown Raleigh, North Carolina. Art will be available for
purchase and many of the artists themselves will be on hand to sign posters.
There will also be a live radio broadcast. The band Liquid Pleasure will be
performing. Over the years, Liquid Pleasure has appeared with such notable
artists as Paula Abdul, The Temptations, Whitney Houston, The Four Tops, Stacy
Lattisaw, Aretha Franklin and Jeffery Osborne. The daytime event will end with
Michael Israels magical performance. It will be a day of art, music, and fun
for the whole family.
The
nighttime event will be a private dinner for 300 at the Raleigh Crabtree
Marriott. Michael Israel will be performing and the top three most valuable
paintings will be auctioned off. A few celebs are sure to be in attendance.
Silent
auction items will also be available including a hand-signed book from Mya
Angelou and so much more.
We will be
raising money for the Autism Research Initiative at Wake Forest University
headed up by Dr. Jeff Segal. Dr. Segal is not only a researcher and
neurosurgeon, he has an affected child. We will also be raising money for other
family-care programs. For a copy of the initiative, please e-mail me at
lorimcilwain@nc.rr.com.
Our
Double-Doer Program will be for those who wish to purchase paintings for
autism and then donate them to the childrens units at Duke, UNC and other
hospitals.
The daytime
event is free---tickets for the nighttime event will start at $150.00 per plate.
If you know of any art-fanatics who would want to attend, let me know so I can
add them to our private invitation list. If you know anyone who would be
interested in purchasing art even if they are unable to attend, let me know as
well. My e-mail is lorimcilwain@nc.rr.com I know the dinner is pricey and most
will not be able to afford to attend. However, we are trying to gather sponsors
and other donors to pay for two tables for parents who couldnt come otherwise.
Please write me at lorimcilwain@nc.rr.com if you are in the Raleigh area and
wish to be added to the list of those receiving a sponsored chair. It will be on
a first-come/first-serve basis.
If you wish
to learn more about the event, please visit
http://www.artismforautism.com. So many people are working hard for this
event. You know who you are, so thank you! Thanks to the Autism Autoimmunity
Project as well for presenting the event. Our goal is to raise half-a-million
dollars.
Dallas, TX -
I winced when our pediatricians nurse walked into the exam room carrying two
trays laden four syringes each. Our two-month-old twins were about to receive
their first round of vaccinations.
However
tough it was to see those needles, I never thought twice about having our
children vaccinated. Of course they would be. Immunizations save lives.
The greatest
health triumphs of the last century had nothing to do high-tech imaging or
transplant surgery. The two most important health advances were better
sanitation - meaning clean water - and mass vaccination programs. No other
health initiatives have done so much good for so many with so little risk and at
so low a cost.
Thats why a
recent change in state law should alarm - and anger - anyone who cares about
childrens health. Buried in a sprawling government reorganization bill, the
measure will allow more parents to avoid having their children immunized before
they enroll in school.
Current law
permits children with medical problems, or those whose parents object on
religious grounds, to forgo vaccination. Fewer than 100,000 of the states 4
million school children attended classes under those waivers last year. The new
policy will allow any child whose parents object to vaccines to enroll in school
without shots.
Passing this
measure is like saying tobacco doesnt cause cancer. The new policy implies that
vaccines do more harm than good, which is demonstrably false.
Some
supporters of the new policy suspect that a preservative once used in vaccines
triggers autism. Scientific studies have disproved that theory. Other parents
fear their child may have a bad reaction to a shot - which is possible, though
extremely rare. Still others may not believe in mainstream medicine, or that
their child will encounter a specific virus or bacteria, or that a disease like
chicken pox is dangerous enough to warrant a preventive immunization.
These
attitudes are possible only because of the success of past vaccination programs.
Most Americans under 45 dont remember the childhood diseases that used to kill
or maim thousands annually. But many older adults remember the dread of polio
summers, and the horror of polio victims living in iron lungs. And these
diseases havent vanished. In 1989-90, a measles outbreak in Dallas County
killed a dozen children. Our pediatrician had three unvaccinated children
hospitalized with whooping cough last year.
Vaccinations
are both a selfish and a selfless health measure. When you vaccinate your child,
hell be protected from certain diseases. When 20 out of 21 kids in a classroom
are immunized, they protect the one child who cannot take the vaccine because
shes undergoing chemotherapy for cancer. When an entire population is
inoculated, a disease has no human reservoir in which it can mutate and
re-emerge. Through mass vaccinations, smallpox was wiped off the planet. The
only surviving samples of the virus were kept by the Soviet Union and the United
States for biological warfare purposes.
Un-immunized
children are essentially freeloaders on the health system. They incrementally
undermine the margin of safety created when almost all kids are vaccinated. The
states new policy on immunizations is a great leap backward for childrens
health.
DISCLAIMER:
All information, data, and material contained, presented, or provided here
is for general information purposes only and is not to be construed as
reflecting the knowledge or opinions of the publisher, and is not to be
construed or intended as providing medical or legal advice. The decision
whether or not to vaccinate is an important and complex issue and should
be made by you, and you alone, in consultation with your health care
provider.
"A foolish faith in authority is the worst enemy of truth."
-- Albert Einstein, letter to a friend, 1901
"I know of no safe depository of the ultimate powers of the society but the people themselves, and if we think them not enlightened enough to exercise control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."
-- Thomas Jefferson, letter to William C. Jarvis, September 28, 1820
"What's the point of vaccination if it doesn't protect you from the unvaccinated?"
-- Sandy Gottstein
"Who gets to decide what the greater good is and how many will be sacrificed to it?"