Since the 1970s, April has been
recognized as National Autism Awareness Month. Now April is drawing
to a close, but just because the month is almost over does not mean
that autism is going away. So, in order to promote a fuller
understanding of autism, Mt. Hood Kiwanis Camp is supplying you with
some interesting and perhaps little known facts about it!
When the term “autism” was
first coined by Swiss psychiatrist, Eugene Bleuler, it referred to
adult schizophrenia but was redefined in 1943 by Leo Kanner, who
differentiated between autism and schizophrenia, creating the modern
understanding of autism.
Similarly, in the 1980s, the term
“idiot savant” was changed to
A study from three states claimed
that areas with higher levels of precipitation also have higher
rates of autism. Why? More pollutants, decreased vitamin D, and
increased levels of television watching are some of the speculated
reasons. (But remember, this was only one study! Still, I'm curious,
if the study is accurate, where Portland falls.)
If one identical twin is diagnosed
with autism, there is about a 90% chance the other twin will develop
some sort of autism as well.
Between 30% and 50% of people with
autism have seizures.
Autism is more common than
diabetes, AIDS, and childhood cancer combined.
Many children with autism might be
extremely sensitive to sound or touch but have reduced sensitivity
to pain.
Autism affects 1 in 88 children...
...and 1 in 54 boys, and
1 in 252 in girls.
About 40% of people with autism do
not speak.
On average, autism costs a family
about $60,000 a year.
The 2012 National Institute of
Health funds allocation was $30.86 billion, and of that money, only
$169 million (about 0.55%) went directly to autism research.
This, of course, is only a small list
of quick facts about autism. What do you know about autism and
spectrum disorder? Let me know what I missed by leaving a comment
here or on our Facebook page! And remember, Autism Awareness month is
almost over, but it's always the right time to increase your own
awareness and the awareness of others. We have to look out for one
another, right? Spread the knowledge and the love!
Earth Day 2013 is coming up! Although
its official date is April 22nd, many Earth Day events
begin tomorrow, the 20th. In past years, City Repair has
produced Earth Day Portland, but this year too few people showed
interest in volunteering. This unfortunately means that there won't
be a big celebration, but that doesn't mean you can't celebrate on
your own! What better way to recognize Earth Day than to spend some
time outdoors? (Weather permitting, of course.) But first, here's a
little rundown of two Earth Day events that will be happening.
TONIGHT! From 7:30 pm to 9:00 pm
is the Earth Day Evening of Music and Song organized by the Center
for Earth Leadership. This event does require an RSVP, so call
503-227-2315 to see if there are still spaces available. This event
will be hosted at the First Unitarian Church on SW 12th
Avenue and Salmon Street, and features musical performances by
Michael Allen Harrison, Sky in the Road, Raphael Spiro String
Quartet, and the Portland Peace Choir. Celebrate with song!
On Monday, April 22nd
(official Earth Day), Portland State University is hosting its 6th
annual Earth Day Festival in the Park Blocks behind Smith Memorial
Student Union. There will be local art and food vendors.
But if you'd like some one-on-one time
with lovely Mother Earth, that's great, too! Here are five of my
favorite ideas for celebrating nature outdoors:
Go on a nature walk (or roll)–
I'm sure Kiwanis campers know how nice it is to simply be outside
enjoying the natural beauty around us.
Make art—Try taking that nature
walk a step further. Pick up interesting things you find along the
way (extra Earth points if it's trash), take them home, and make
some art with your findings. I used to do this with my friends when
I was younger (and sometimes still do when I find neat “junk” on
the ground).
Find a horse—This is another
Kiwanis favorite. Not only is horseback riding a fun way to spend
time outdoors and get in touch with Earth's creatures, but it's
relaxing and therapeutic.
Ride a bike—Oregon is a great
place for bicycling, and there are many different bike options for
people with disabilities. There are hand crank bikes, which allow
wheelchair users to power themselves by hand; side-by-sides, which
allow people with mobility difficulties to cycle with somebody else
as support; tandems, which have similar benefits as side-by-sides,
but are particularly useful for visually impaired cyclists; and
tricycles, which are great for individuals who have trouble with
balance.
An adaptive side-by-side bike. Cool, right?
Have a picnic—This one is
possibly my favorite because it involves one of my favorite things:
food. Grab a blanket, a friend, and some tasty snacks (burritos and
pie, anyone?) and spend the afternoon at a park. Make sure, though,
that you bring your provisions in a reusable lunchbox, basket, or
bag. After all, it would be silly to bring paper bags and plastic
water bottles to an Earth Day picnic, right?
Whether you prefer organized events or
creating an event of your own, take some time to look around and
appreciate what a beautiful place we live in this weekend. It's up to
us to keep it beautiful and healthy. If we want to keep our home
clean and make it even cleaner, we have to continue keeping it
healthy even after the Earth Day festivities end. We live in such a
wonderful place! Go out an enjoy it, and share with us what you did
to celebrate Earth Day.
I feel it is necessary for me to
preface this post by expressing how excited I am about it. See, I
joined Portland State's crew (rowing) club in January, and it has
gradually—yet rapidly—taken over most of my life, replacing movie
nights with optional practices, dreams of flying with dreams of
rowing, and, most predominantly, replacing everyday words and phrases
with crew calls and boat terminology. I guess I should have expected
sooner the day I would write a post on this blog relating to crew.
Friends, that day has come.
But it's not entirely because of the
way crew sucked me in like the Blob to a frantic bystander that I am
writing on such a subject. Last weekend, I was in San Diego competing
in the San Diego Crew Classic, and I was walking around, I saw a
blind man wearing a competitor shirt. I started thinking, as I am
wont to do, about the technicalities of rowing with a disability. In
this man's case, I could understand how visual impairment might
actually be a sort of advantage, it forcing one to focus on hearing
and feeling the other boat members' movements to synchronize
movements. But it seemed to me certainly impossible to row with most
other physical disabilities, since rowing requires constant use of
arms, body, and legs along with uniform movements from all members in
the boat in order to keep the boat from tipping (as mine did the
other day. Good morning, Willamette River...). However, to my shock
and delight, adaptive rowing actually exists!
First, let me give you a quick rundown
on non-adaptive rowing. I am most familiar with four- and
eight-person boats. In these, there are four or eight rowers,
respectively, and one coxswain (that's me!) who faces in the opposite
direction of the rowers, steering the boat and making calls. There
are also Each rower has one oar that sticks out either to port (which
is the left side of the boat if you are facing the front of the boat,
referred to as the bow) or starboard (the left side facing bow). The
oars alternate, with one going port, then starboard, then port, etc.
There are also sculling boats, where each rower has two oars, but I
am less familiar with these. The rowers strap their feet to
stationary shoes in the boat and sit on impossibly small seats that
slide back and forth along a track. This allows them to generate
power with their legs as they drive their oars through the water.
There is a lot more to it than that, but I think that will be a
sufficient introduction for the purpose of this blog.
An adapted boat with a stationary seat and pontoons to create better balance.
Adaptive rowing began in Philadelphia
when veterans blinded in World War II competed in an Army versus Navy
race. Since then, many programs have been developed to improve and
increase opportunities for people with disabilities to row
competitively. The first rowing club created solely for people with
disabilities, the Philadelphia Rowing Program for the Disabled, was
created in 1980, and in 2002, the FISA world championships included
adaptive rowing in the regular program. Adaptive rowing was also
included in the 2008 Beijing Paralympic Games. The sport continues to
grow and evolve today.
With adaptive rowing, changes can be
made in equipment, technique, and various other aspects of the sport,
like the calls made by the coxswain. There are also different
classifications of rowers. There are currently four adaptive rowing
classifications based on different functionalities: arms and
shoulders (AS); trunk and arms (TA); legs, trunk and arms (LTA); and
legs, trunk, and arms mixed coxed four for intellectually disabled
(LTAIDMix4+). This last one means men and women can be in the same
four-person boat with a coxswain. This one is particularly
interesting because it allows rowers with intellectual disabilities
to compete, too.
People who can use the traditional
sliding seat are likely to be in the LTA class, and those who cannot
would use adaptive stationary seats and would be in either the TA or
the AS class. Members of the TA class might have something like a
double leg amputation, cerebral palsy class five, or a low spinal
cord injury. The AS class might include athletes who need a chest
strap, like people with cerebral palsy class four or those with
higher-level spinal cord injuries. Regardless of classification, it
is extremely important that rowers, able-bodied and physically
impaired alike, push themselves to do the most that they can using
all of their abilities. Rowing is extremely physical, but it's truly
a mental sport. If you get past the metal blocks that tell you you
can't possibly keep going, then you're golden.
I could keep going on, but this post is
getting a little lengthy. I shall end with this: Give rowing a try if
you are in the mood to push yourself harder, physically, mentally,
and emotionally, than you ever have before all while having an
amazing time and getting to know people you ordinarily might not
meet. That's what PSU crew has done for me and my crew mates. (And,
when you think about it, joining a crew team shares a lot of
qualities one gets out of MHKC: a new experience, great people,
insanely close relationships, physical activity, and the wonderful
outdoors! Who could ask for more?) So check it out, my friends! Head
over to the US Rowing website's section on adaptive rowing. It's
amazing stuff.
When I entered high school, I wanted to
be a journalist. I wanted to go to events, conduct interviews, help
others experience what I had experienced. I wanted to set the scene
and write the facts. I was all about it. So my first semester of my
freshman year, I enrolled in an introduction to journalism class. I
enjoyed it enough, could have pursued it if I had been willing to
commit the necessary time. I had the opportunity to be a journalist,
and still do, I suppose. I still have the means to try my hand at a
career many members of the developmentally disabled community
typically don't get the chance to experience. Except, perhaps, in
Portland. Mainstreamed Media is a non-profit organization based in
Portland, Oregon that gives people with developmental disabilities
the opportunity to be journalists. The organization's goal is to
provide people a voice in the media and a platform for community
involvement.
Mainstreamed Media founder, Todd
Kimball, says he got the idea for his organization after TEXT.
Kimball has cerebral palsy and knows what it can be like to have a
disability prevent you from doing things you'd like to do. Kimball
also understands that people with developmental disabilities are
creative, open, and have a rarely-heard perspective to share, asking
questions and getting answers that other media would not. “I notice
both through my own experience as a person with a disability and my
work with people with developmental disabilities that people with
developmental disabilities needed opportunities in life,” Kimball
says. “They had incredible passion, they had interests in the same
things that you and I do, but they just didn't have the vehicle to
experience that.” He has seen the limited access the
developmentally disabled are granted at entertainment events, like,
for example, being consistently seated in the back row or only being
able to attend if a paid staff member is available to keep watch. But
with media credentials, members of the developmentally disabled
community are allowed to experience events in an entirely different
way.
Working with Mainstreamed Media has
some pretty fantastic benefits. As mentioned, people with
developmental disabilities get to see what it's like to be a
journalist. But what's more (and enviable), they get unprecedented
access to community events—like sports, concerts, or theater—that
they are interested in and the opportunity to interview the
celebrities at those events. For example, singer Lyle Lovett and
comedian Lewis Black have both been interviewed by Mainstreamed
Media's journalists. Furthermore, Mainstreamed Media, with the help
of volunteer media assistants, allows people with developmental
disabilities to develop and maintain new friendships with people who
have similar interests.
If you're interested in getting
involved with Mainstreamed Media or just want to know more about the
organization, check out their website, MainstreamedMedia.org, or
email Todd at Todd@mainstreamedmedia.org.
You can also call at 503-960-4683.
What do you think? Do you know anyone
who is involved in this? Is it something you or someone you know
might like to try?
The amazing weather we've been having
here in Portland (and a tip from the lovely Ann Fullerton) prompted
me to write this week's blog about accomplished surfer Clay Marzo.
Marzo, a 23-year-old from Maui, has always felt more comfortable in
water than on land. He entered his first surf contest when he was
only five years old, and by the time he reached 14, Marzo signed on
with Quiksilver after sending in a video of his surfing skills to the
company's team manager, Strider Wasilewski. He has been described as
a prodigy, a genius on the water. However, for most of his life,
Marzo has struggled to shine on land in the way he does on water. He
is uncomfortable in social situations, fidgety and unfocused, and
often comes across as rude and awkward. Clay Marzo, world-class
surfer, has Asperger's syndrome.
Marzo, called "The Surfing Savant" by Rolling Stone, wasn't diagnosed with Asperger's
syndrome until he was 18 years old. Before then, everyday tasks and
basic interactions, like sitting through a family dinner, were an
unexplained struggle. When his parents allowed him to be tested for
Asperger's at Wasilewski's request, Marzo and his family were
actually relieved by the diagnosis. Now they had an explanation.
Knowing why he could be wholly focused on surfing while not being
able to focus on anything else allowed Marzo to embrace both aspects
of his life. He, along with various autism specialists, attribute his
talents to Asperger's, noting that his ability to hyper-focus on
surfing enables him to excel at it. Wasilewski calls Marzo's
Asperger's his challenge and his gift.
While Asperger's is what gives Marzo
his unique, all-out, go-for-broke surfing style, it has also kept him
from doing what many other professional surfers do, like entering and
winning contests. Traveling is often a nightmarish experience for
him, and, of course, there are all the social obligations with fans,
sponsors, and the press. Marzo often copes with these stresses by
pulling out clumps of his hair or by getting high to calm his nerves.
When he does compete, though, he amazes onlookers, often scoring
perfect tens. His inclination to be in the moment allows Marzo to
risk big moves that others wouldn't dare. However, this way of living
is also a hinderance, not only to his safety, but also to his ability
to win competitions. Although his skills and tricks far surpass many
of his competitors', Marzo can get trapped in risking too much and
paying the price for it. In one competition, for example, all he
needed to score was a six in order to win. This is something he could
have easily managed with a few well-executed twists, but always
thinking one moment at a time, he went all-out and fell, losing the
winning seat.
Since his diagnoses, Marzo has gone to
therapy sessions and has made considerable progress in learning how
to manage life on land. Still, he is happiest and most comfortable in
the water, where he thrives and never fails to push himself and awe
spectators.
Had any of you ever heard of Clay
Marzo? Can anyone relate? Is anyone else as amazed as I am by this
man's surfing? Let's hear your comments!
If you picked up a copy of The
Oregonian on March 18th, you may have seen an articleregarding Matt Shea, a recent college graduate with Sotos syndrome
who grew up in foster care. When he was a senior in high school, Shea
participated in the “My Life” program at Portland StateUniversity. My Life is an investigative project conducted by a team
of PSU faculty members (including MHKC's Ann Fullerton!) that studies
the transition of youths with and without disabilities as they leave
the foster care system.
With the help from an almost
six-million dollar award from the Eunice Kennedy-Schriver National Institute of Child Health and Human Development (NICHD) and the
Institute of Education Science (IES), two related studies will be
conducted over a five year period and will involve around 350 people,
aged 16-18 years, who receive foster care services through Child
Welfare Offices in Multnomah, Clackamas, Washington, and Marion
Counties. The investigation involves randomly assigning youths to
either an intervention group or a control group. In the intervention
group, participants will receive individual coaching and mentoring
for a year in addition to lessons in applying problem-solving skills,
accomplishment tracking, and connecting and building beneficial
relationships with other adults. The idea is to help young people
better achieve their goals as they transition out of foster care.
Matt Shea, 23, proudly displays his diploma from OWU.
Project manager and former special education teacher, Lisa McMahon, hopes that her involvement with My Life will allow her to see a difference being made beyond the youths she meets personally. "As a high school teacher," she says, "I was able to impact each student in my class. As a researcher of intervention, I hope to see the day our intervention is used throughout the state." McMahon also expresses that her interest lies in people, especially teens, and their abilities to decide what they want and then work toward achieving those goals with whatever support they deem necessary.
It sounds like an interesting study
with some real potential benefits. Teenagers who grow up in foster
care tend to face a multitude of challenges as they move into young
adulthood, like finding jobs and getting into colleges. Sometimes
they even have to cope with homelessness, mental health issues, or
single parenthood. The odds of dealing with these troubles increases
among teens with disabilities. If the results of these studies are
positive—which, according to the pilot study that was conducted,
they should be—the transition out of foster care services can be
much more successful for many young adults like Matt Shea, who is now
back in Portland after graduating from Oklahoma Wesleyan University,
a goal he made and achieved with the help of his My Life coach,
Alison Turner. Pretty fantastic, isn't it?
Are any of you interested in working
with young people, either with or without disabilities? Being a counselor at Mt. Hood Kiwanis Camp seems like the perfect way
to gain experience for so many types of careers, especially in social
work, counseling, and teaching fields. Lisa McMahon's advice? "Try it out! Find as many experiences as you can to spend a day in these worlds so you can truly feel what it's like. With the side note of being really strong in your self care. Some days are really hard emotionally and you need to be able to get refilled so you can come to work tomorrow with a smile."
In a project like this, would you
be more interested on conducting the research or going in as a
counselor, working with people like Matt to help them reach their
goals?
It's mid-March already! Sometimes I
can't believe how quickly time passes. This week's post is going to
be a little shorter than usual in terms of word content, but that's
because I would really like everyone to watch the TED Talk below.
It's a little long, but it sheds quite a bit of light on the mental
processes of people with different types of autism.
The talk is given by Temple Grandin,
one of the most prominent adults with autism today. She is a doctor
of animal science, a professor at Colorado State University, autism
activist, bestselling author, and inventor of the hug box, a device
used to calm children with autism. I found her talk particularly
interesting and inspiring not only for the message it supplies—the
world needs all kinds of minds—but the way in which the message is
presented. It's an enlightening look at minds across the autism
spectrum as explained by a woman with firsthand experience in the
subject. Not only does Grandin give excellent examples of how
different brains function—for instance, she compares certain human
minds, like her own, to those of animals, who are sensory-based
thinkers—but she is also an example herself. So while viewers are
listening to her insights, they are also seeing how what she says
plays out in real life with real human beings.
So many talks are given by people who
have second- or even thirdhand experience with the subject of their
discourse. Those talks can be very effective; just because the
experience isn't firsthand doesn't necessarily make the information
invalid. But something about not only talking about a subject, but actually
being the subject allows viewers to get a whole new level of
understanding and insight. Therefore, I implore you to take the time
to watch this video. It's nice to look at things from different
perspectives, right? (That's why I love it when you guys share your
stories and experiences. Please continue to do so!)
How do you learn best? I, for one, am a
visual-verbal learner and could totally relate to what Grandin said
about learning social skills as if she were in a play. Do you guys
have any interesting learning techniques?
