Tuesday (Day 1)

FFB video - questions about guide dogs

Questions for Morehead School visit tomorrow


Are there sports at Morehead school?
Are they allowed to have visitors and how often?
How many people per grade if there are only 62 students?
Guy at Google who has gone blind -- screen reader reads things at a high rate of speed
Seeing eye dog -- how does that work?
Is that state provided?
http://www.eyedogfoundation.org/
http://www.ada.gov/qasrvc.htm


Wheelchair activities in the gym --


Wheelchair sports debrief...
Hard to control the chair was difficult
Arm strength; eye-hand;
Keeps cardio up; relives stress
Blood circulation; mental health
Andrew -- 6th grader -- has Spastic depletion (form of CP)
Can walk in H2o but not normally
Can you play soccer? Knock it around with the wheel base
Crutches are for grass, where walker and wheels can't go.
Visiting various places -- what sorts of adaptations can be made?
Do legs get sore?
Yes -- if you can feel your legs still
Diff cushions on chairs to switch things up…
Are there exercises you do to develop leg muscles?
Can't rebuild nerves… so she does not really have to do much
Someone might want to look into rebuilding nerves
What sorts of things has the school had to do to make things work for you?
Do your friends treat you any differently? No.
What is the PC correct term?
It changes every 7 years…
Andrew notes that "Kids whisper to parents and stare -- just ask!!"
Advantages?
Ride in golf cart and don't have to wait at Disney
Can ride faster
Electric wheelchairs?
Controversial comment: "they're for the lazy"
Do you have a brother? 7 yo brother and he's not
Neurological disease -- environmental and lack of folic acid
Spina Bifida for Ashley
Andrew: brain does not know how to tell legs what to do
POWERPOINT
Special Olympics and Paralympics
Special = cognitive (autism, down syndrome)
Para = physical disab
Adaptive sports started in VA hospitals after WWI
California 1940-something
Importance of sports
Accountability
24 official sports
Boccia = adaptive
Goal Ball (dodge ball for blind people -- ball makes noise)
In NC, charlotte 10th grader
May be in paralympics
Double amputee -- has advantage b/c can move quicker
Sports -- doing more with sports --
Dave Kiley (sp) has gold medals in wheelchair
Tucker DuPree
Elexis Gillette
Clap so he knows where to jump for long jump…
Saw the "Excuses" video
Final point: There are no limits -- if you do get injured, you can participate.

LUNCH

Visit from Michelle and Shea


Shea born in AZ
2 or 3 -- was not responding to them or to loud noises and took to doc
Diff doc -- realized -- oh, he's deaf… can't hear
Back then just read lips
Doc suggested Shea go to deaf school
Michelle went in summer to Galludet and did lip-reading -- really hard to do
Some schools are the kind where kids live there, but my mom chose a day school for deaf kids
He came home every night
Mom took sign
Siblings took sign as well -- learned it by being in family
Is sign language accepted as a "foreign language"
More in SE than in NE
He's oldest of family
Not doing great in school -- mom threatens him to mainstream him
Mainstreaming vs deaf school
Mainstream would be going to a school like CA with an interpreter
When I grew up, never understood TV b/c no closed caption until about 15 years old
For the phone, when call friends, here's a TDD
Operator
You can type messages back and forth
Operator would type as relay for
She moved to AZ and (took sign language at ECU)
For phone or doorbell ringing..
Interpreter voices what he says and it's a lot quicker…
Now it's a normal conversation
How many languages?
ASL and English
On football team in HS
When 18 went to Galludet in DC
One in CA, one in Rochester, NY, and one in DC.
Babies learn sign
Build on vocab
Learning sign language -- when you can't hear, you pick it up fast
She learned in four stages
"I minored in it"
If you hang around, you can advance in your language
Born deaf -- never remembered hearing…
Lightning hit a chimney and house shook
"it must be bad if Shea can hear it!"
Do you learn letters or words first?
Words before the alphabet -- letters come later
Sign milk, eg… "more", etc… -- the things babies need to learn
Also, it's harder to make letter signs with little fingers
Kids turn the TV way up and he has no idea
House alarm goes off -- won't hear it until lights flash
How do alarm clocks work?
Plugged into a lamp -- so a light comes on.
Also you can have it set to vibrate
He'll say "a siren is coming" way before I hear it…
When people find out you are deaf, do they try to sign?
Sign language is diff in Europe -- diff for every country (all with own letters)
The US sign language derived from France
My dad yells at me -- how do you get the kids to listen?
It's a lot of expression - a harder sign language
Talking is very difficult -- he decided not to try it
Name sign related to personality -- can be spelled out...
Oldest daughter banged her head and she became that name sign
Signing a story to his kids --
He makes up stories -- big picture story that is way more expressive
Shea works at the autism society -- stays home now
He loves to teach sign language -- that may be happening soon
Do a lot of texting -- blackberries work for that
Technology is only for deaf people -- video phone, eg
Who provides that? Fed Govt (ADA)
Doc office and schools have to provide interpreters
Eg: at doc office it's not fair to the spouse who has to interpret
She can check the interpreter to make sure they are getting it right
At church -- would you just let anyone in the audience be the preacher?
Or, say you go to court -- you want to make sure you're getting the right info
At First Sight -- movie reference
If Shea could hear out of the blue right now, it would be really confusing…
No regrets about being deaf, but would love to hear what animals sound like
When babies were crying, that was good for Michelle
But when they complain and their backs are turned, he does not hear that either?
At Galludet -- in 1988 -- not a real safe area
M had a good friend walking off campus to go to apt
2 guys on olympic wrestling team
Walking home -- dark -- townhouses
Key would not work -- no light
3 people jumped this guy and the other guy is trying to unlock the door
M Home to meet S's family -- had always dated deaf girls
"Mom, is this one deaf or hearing?"
M was like "I can hear you"
How communicate in a store?
Point to a pad; or type on blackberry…
3 kids to McDonald's -- hard for the person who's working
I want to be the one to order -- has to be aggressive
Kids are 10, 7 and 6
How good are they at signing?
All are really good
You can see son is very good at expressions
Daughter (10) spells fast
People are not well educated and are often impatient
How do you drive?
Half the time, the music is loud and we can't hear anyway
Deaf people drive like hearing people
How would police communicate in situation?
Can't cuff a deaf person in back
What if you break your hand?
He has a friend who lost an arm -- you get used to signing with one arm
Shea has friends who are deaf and blind…
Hard to include everyone at dinner conversation...
Can get overwhelming for M
In a group of deaf people talking all at once, it's not hard for Shea at all...
Friends are so fast at sign language when they get together…
They fly… hard for M to keep up
Galludet -- strong deaf culture
Can be discriminated against if go with hearing people
Cochlear implant issue debate is one to look up
http://www.youtube.com/watch?v=-WA7-k_UcWY
Martha's Vineyard was trying to make it a deaf island
(did not know that)
Galludet is 4000 students -- he did not have friends who were hearing
Facts about Galludet: http://aaweb.gallaudet.edu/x20520.xml
Blind man climbing Mount Everest -- see article in Sports Illustrated
Makes a picture in his brain

Wednesday (Day 2)


Interest in communicating with others
Inclusion initiatives in his theater company in Raleigh
NC Council for development and disabilities
How to better communicate with members of the disability community
Sign language interpreters interpret the whole performance (Shakespeare in the park in DC)
Audio description -- listen to someone audio describe what's going on.
Also introduced it to 6th graders b/c very expressive language and translates to the theater
Inflection, pitch, tone, etc…
(Shea did not get jokes often, M said)
What tools did Shea use?
Facial expressions
Body movement
Broad or tight (size of signs)
Speed/rate of communication
Hi My (touch chest) name (2 on 2) (no "IS") _ (your name)
Two letters in a row -- bump the letter.
Typically you do not finger spell multiple words
You might have a short pause, but again, you're mainly signing whole words
Consider lighting -- can't sign in the dark, eg -- also if you are backlit, it matters.
--
Other signs for basic sentences
Different ways of saying "hi"
Enemy
Love (or dog)
Meeting your favorite team at the airport (and there they are!)
Power of the body in physical communication
The way that you're sitting right now is sending a message
Yes -- knock hand down
No -- two fingers down on thumb
But it also means "stop"

Governor Morehead School Visit


Three groups (but each of you saw three different things)
Science room -- teacher said she had to learn diff types of braille
Mathematic and science are diff
Do students have to learn all types as well?
Stories about discrimination against blind people
Partially blind Girl at McD's -- $20 bill
Cost was $10, and she got two bills back (two ones)
That would not make sense
Not addressing the person directly -- asking the person helping them
(similar to Shea at McD's -- he has to be aggressive to get to order)
Stairs around the school -- why? What was it first (if not designed for blind)
Are the stairs there intentionally?
Students memorized a 16-block grid in Raleigh and they had to memorize that (using sound landmarks and physical ones, too)
Signs for Governor Morehead School (do they avoid using the word "blind"?)
The Orientation/Mobility people
Expand from "getting" one room to the 16 blocks
Not all students are completely blind -- diff levels of vision loss
Might be able to do some things but not others
What does it mean to be legally blind?
http://www.nfb.org/nfb/Legally_Blind_Definition.asp?SnID=2
20/20 vs 20/200
Having one eye stronger than the other
Patching the good eye to force the bad eye to work -- have to strike a balance
Can improve from say 20/200 to 20/50

Thursday (Day 3)


FFB (Foundation Fighting Blindness)



When you think of a blind person, What do you think of?
Dark glasses; cane
Betsy has seven degrees of visibility (out of 180)
20 degrees is legally blind
RP -- http://www.rpsa.org.za/retinitis.htm
Retinitis Pigmentosa
Janie
Slow progressive disease
Drove car; went 8 hours to college
Thought she just had night blindness
Taught ESL 13 years in Atlanta
Took evening classes -- on hwy at night -- can't see the lines on the road
Almost hit gate into apt complex
Went to get it checked out
At age 25 diagnosed with RP -- going to go blind; no cure
What do you do???
Stevie Wonder images -- did not want that
Learned a lot about blindness
Used cane
People don't say "hi" -- you run out of the way
She wants a dog--
You have to fill out an application
Have to pass mobility training class
Cross streets by yourself
Take a subway
30 hours, and then you can re-apply
She says forget about it…
But then she made a choice to take the cane class…
Went to atlanta airport and flew to NYC by self and went to school in LI
30 days in a dorm
With 50 other people severely visually impaired
Just married and had to leave husband
It's like adoption
She had just turned two
Stare at her for two hours?
Life changed
Had to stop teaching - now she educates students
3 year olds can tell you everything about guide dogs
Have to allow an hour when go shopping -- people want to know about Janie
She feels like she's still herself...
Run 20 miles a week on treadmill -- fasten a belt and run
Just took Janie to Final 4 in Detroit, and Roy Williams signed her harness.
Betsy (with Janie) and Jennifer
Guide dogs will go to bathroom on command
"gut busy"
Betsy got her freedom back
Never pet a guide dog
Think about it as "this is my car"
Macular degeneration is ( )
RP is a small tunnel
Used to play tennis and lax
Usher Syndrome (from factsheet)
http://www.nidcd.nih.gov/health/hearing/usher.asp
There are 10 guide dog schools across the country -- all free
150k training per dog
2 years of training (Betsy got Janie at age 2)
With a volunteer family (puppy raisers)
"Working dog"
Trained not to eat food -- they throw food at them
"this is my child"
Janie is with betsy 24/7
She (Janie) has her own pillow
It is the law to allow you into the restaurant
Janie can't go in ICU in hospital
Do breeders breed dogs intending for them to be guide dogs?
Breed all dogs at the individual school
Pass rate is 40% -- more than half don't make it
Maybe firearms or security would be good for those that don't pass
Also might be therapy dog for people who have autism
Betsy bred at a place that breeds yellow labs (Janie), black labs, golden lab, German Shepherd
Guiding eyes for the blind
Labradoodles also
Most are two -- until she turned 3 there were some puppy issues
She has a long working life -- 6 to 7 years at the max
Retire 8-10
When they retire, what happens?
You get dogs until you die. You can keep them all if you want them…
Never has harness in the house
90 pound golden at home
All dog when at home (play play play) -- when the harness goes on, she's work
Tough when other dogs are barking
B takes out a kibble and encourages her to keep going when other dogs around
It's not natural -- steering a dog
You have to learn to trust the dog (think of blind guiding up and down stairs)
It was a journey and it continues to this day
A year and 6 mo
Took a year to get used to one another
But it's worth it -- get independence back
Other dog is an older dog
Long socialization process with the two dogs
Her husband -- stopped driving at 29; they met at age 32
What she has is 20/40
Do you wish you'd known when younger?
So glad I did not know
Creates a lot of anguish and fear
(Betsy's is recessive, so would not show up)
If visually impaired, is there a stigma?
Do other senses compensate?
Hearing and touch senses seem to get better
Hard to tell new people -- learned quickly to be honest
Is it hereditary? Can be...
She decided not to have kids
Some have generations of the disease
Drivers' license
Permit
You get the test and you just read the eye thing
You can get a license
They don't take your license as a result of this disease
(for older people as well)
(Pam's husband has a license good thru 2035 from AZ)
Track progression to see how it is yearly
Retinal disease is diff from corneal (front of eye)
That's Lasik -- you can wear contacts
Retina is the back, attached to brain -- that's why you can't do eye transplants
Retina brings in light
Rods and cones are dying -- that's the light entry point
Janie maintenance: checked once a year, but every 2 months grooming
How does vision problem effect job?
Became public speaker instead of teacher
FFB -- founder had RP
1971 founded by _ (hoops owner)
Research
Gene therapy
Take a bad gene and replace it with a good gene
3 people with positive results -- that clinical trial was funded by FFB
All were children 19, 20, 22
Could not see eye chart
Capsule the size of tip of pencil
ECT -- encapsulated cell technology
Capsule releases vitamins to keep rods and cones alive
http://brpsnews.wordpress.com/category/research/
Cells in eyes don’t replace -- but all other cells in body do so.
You need eyes, brain and light
Betsy is missing light receptor cells
FDA regulations and lack of funding -- prevents more people from doing trials
Clinical trials have three phases
Safety
Then 2 and 3 are to make sure it works
10-12 year time frame to FDA approval
The three people with gene therapy are in phase 1
10 million are mostly age-related macular degeneration
RP versus Macular Degeneration
Cane motion is all in the wrist
RP is diff for every person
It's mostly clear, but she has spots (not black ones)
People who have lost their vision say they see white
License issue again -- someone might want to look into that one…
Stargardt's Disease
http://www.allaboutvision.com/conditions/stargardts.htm
RP is 350k people in the US
Cone-Rod is even rarer
Sat June 6
Fundraiser -- Vision Walk -- hope to raise 150k
Dinner in the dark -- 250k -- cover everything -- very very dark
45 min of dinner in the dark -- awareness raiser
(people opened cell phones to get a ping of light)
Meeting Janie

Friday (Day 4)

Wiki Review - need someone to write the home page

Simon Birch

In the title role is 12-year-old Simon Birch (Ian Michael Smith), who is afflicted with Morquio syndrome, a genetic disorder which causes dwarfism. The story begins when Joe Wentworth, played by Jim Carrey, visits the grave of his childhood friend Simon Birch, whose gravestone is marked 1952-1964. Joe explains that Simon is "the reason I believe in God." This is followed by a flashback to their friendship during the early '60s.

More info about Morquio Syndrome.

Monday (Day 5)


Tucker DuPree

4 days left -- I remember Counting down the days before the summer
Exploris MS; basketball; skateboard
Freshman year -- drummer -- played on drum line
Did march band for 2 years -- had to let it go soph year
Swam on accident
Sister -- we're going to swim senior year
Went in ...
What do you have to lose?
By end of season able to compete with the best of them
Started swimming on a club RSA -- between 9-10 grade
3x/week, but not super serious about that
Soph year swimming, got even better b/c swim club team
Wants to go after a junior Zach ?
Swims every day
Tired -- hardest thing I've done
Took up a lot of time
Morning practices, then swim after school, then come home and do work and go to sleep
Junior year beat Zach (one year older) and got to put my name on the record books
Senior year team captain and MVP and set two HS records
That was the beginning of the olympic journey
Oct 2006 -- used to sleep in contacts
Could not see batman sticker on closet door
Heads to school senior year
Didn't think anything of it -- drove to school
But back at car, closed right eye and tried to look at clock in car
Called and left eye still acting funny -- changed out contacts
Last doc appt of day --6 p.m. -- sat there for 2 hours and did tests and tests
Everything looks normal, but Tucker can't see…
You need to go to the ER immediately
Got to ER -- tell them your eyes hurt -- you go right to the front of the line
Broke my arm -- tell em I stuck a stick in my eye
Got there 9-9:30 and sat there and tested to 3 a.m.
CAT scans and ultrasound
You can live to the next day
"you're fine for one more day"
Retinal specialist at Duke
You have a doc appt tomorrow
Drove back to Raleigh and then back to Duke 6 hours later
Not until Nov was he diagnosed -- took 4 vials of blood and genetically analyzed it
One chromosome is a marker for a rare condition.
Only one in 9000people have it (in N. Europe) -- rare cases and everyone is diff
Male puberty triggers the chromosome to attack eyes
Dad says it's a speed bump in your life -- you can make it a mountain or you can keep going
How can I get back to normal?
By Feb of 2007 I'd lost about 80% in both eyes
That's really rapid -- in 6 mo
Glaucoma, by contrast, comes over years
Do you need counseling?
No, it's just a speed bump
Driving?
You get independence and you can drive yourself where you need to go
One day I noticed I could not see stop lights in both lights
Seeing what cars around me are doing
"This isn't safe"
Drove into driveway and put car in park and looked in rear view mirror and I realized it would be the last day I ever sat in driver's seat with keys in my hand and drove
Put keys and driver's license on table and slid them to his mom
I can't drive any more
I had to turn in my independence…
Dad was great -- we can adjust our schedules to make this work
I remember getting my permit at 15
And I remember taking my test
Everybody's grumpy at the DMV
#24 what do you need?
Surrender my license -- shredded in front of me
That was when my life changed -- I will never hold a license with my pic on it
Just ID cards
That was the first time I was emotional about this
A month later in March a phone call from Alexis Gillette, a man legally blind
Dept for Services for Blind told me to call you
AG lost his vision at 11
Went to triangle town center and he grabbed my arm
The blind leading the blind
That's what the saying is from -- it's us
We walked around the same stores 15 times…
His cell phone reads to him
I play piano and drums and I'm swimming now
Are you any good?
I want to swim in college
Ag says "I run track" -- he does it internationally
Paralympics
First thing that pops into my mind is Special Olympics
No - no -- it's paralympics -- Physically disabled
I tell him I have all my appendages
I'm blind but not stupid… me too.
Calls Julie O'Neil
Have 20% vision left
Meet in July and in Vancouver, Canada
You should come out
I need to finish HS
32 out of 585 kids
Mom helped support me -- she's a teacher and helped me with HW -- read it to me.
Everybody should be nice to your parents, b/c you never know when you may need them.
Offers from a number of schools
Gardner Webb was one
http://www.gardner-webb.edu/
Will go to Wake Tech -- less pressure and cheaper
All my swim friends are off to college to swim
Fall 2007 to Wake Tech
Summer 2007 to Canada for first paralympic swim meet
2008 Beijing the games were televised
Breathtaking
People walk around locker room and hop around pool deck missing arms, hands, legs
People think "oh that's so great and so cute"
And that's now a slap in the face to me in a way...
I found out after my first session that these people don't have sympathy for each other
He's out for the medals just like I am
When I hear their stories, I realize I don't have any problems
5 american records, 5 pan american records, and fastest visually impaired swimmer in the nation (fastest in 25 years)
At first meet!
Every news channel in my face
They did not know anything about me and had to ask something for TV
Dec 2007 another meet
5 more records
I want to get better and not settling any more
April 2008 tried out in Minneapolis, MN for olympics
2000 athletes here -- 6 sessions (2 a day)
Top 8 to make finals
38 spots on the team
Ranked 4th in the world
They are calling names -- they miss the Ds
Said my name last -- practical joke
Had to give lots of info -- favorite color, swim suit size, T-shirt size, etc...
Trained all summer
August 2008
Able bodied games are the week before ours
The week after is us -- I swam in water cube
Met all the crazy athletes -- LeBron, Kobe, Serena, Michael Phelps
Colorado Springs -- Olympic training center
Train your lungs for that torture -- later when you can breathe, you breathe better
How to talk, present yourself, etc…
Trained on top of that
COlorado to AK to Japan (16 days)
Get used to time over there
In the water 2 hours after a 13-hour plane ride
Body guards in Japan
Closed down whole restaurant -- Chile's for dinner, eg
To have that kind of attention was a lot of fun
Not where I'd envisioned myself
Got free stuff -- team processing
Huge warehouse -- just vendors -- Nike, Ralph Loren, Speedo
They want to give you stuff to wear while on TV
Personal assistant comes with you
You wear medium t-shirts
Here's 15 shirts, 15 pair of shoes
Watch, ring, sunglasses
3 pair
USOC gave us four boxes to send home
13k of free stuff if you got everything
-- they leave the price on -- sweater vest for $400
Blue blazer with white hat and white pants
We have all that stuff, too.
Flew into China
4 days before the games opened
Opening ceremonies -- this is really happening!
With 300 paralympic athletes
We're the best in the nation and we're here to represent our nation - so have run
Bird's nest stadium
Wears sunglasses b/c light sensitive
Whole team chants U-S-A and there's a really bright light
Got goosebumps from the noise
Arena of 91k people
And there's a camera right with me
You have to be like "ok, you're walking with me… sweet"
Tucker was on the jumbotron
In Olympics, got beat by a Ukranian by .2
Came out 4th (was ranked 2nd)
First question is "how does it feel to come out fourth"
I'm so glad I was the first loser...
The fact that I did not medal made me work harder in some ways
Harder to stay at the top than to
52 days a meet in Edmunton Canada
Selection meet for worlds in Nov of this year in Brazil
San Antonio Mar 2010
Tryout for Netherlands
2012 London
"You have to chase your dreams, not the competition"
Q&A:
What events
50 free, 100 free, 400 free, 100 back 200 IM, 100 butter
25.1 (long course) 55.1 422 104.2 100 fly 101.3 200 IM -- 216
21.9
In co springs, he did race Phelps
We poured out his water and filled it with pool water
Phelps put this guy's legs up high where he could not reach them
Retaliation -- Don't take my legs
I have 80% loss -- all I see is peripheral
14x pocket magnifier
That's how I read my cell phone text messages
Talking alarm clock -- her name is betty -- she says "the time is 4 o'clock"
How do you know how to turn? All stroke count
When you swim 4 hours per day, you know 30 strokes down and 30 back on long course
What's the future like?
Attacks your eyes for three years
Has not lost vision for the past year
Molly in a middle school
Losing her vision -- really upset and she's asking lots of questions
You can do all the things other people do
My friends putt putt, I suck at it…
It's a long outing -- 18 holes takes 3 hours
Went to prom -- hang out with my friends
Girls pick me up if we go out…
Other senses have picked up
Other famous people:
Went to white house and met track people and b-ball judo
What you do see, it is clear?
Yes, but periperal -- in color
Special vs Paralympic
Mentality is the same -- you want to win
Braille
I can read a little Braille
Significant time diffs b/w able-bodied and paralympic
20/200 = legally
20/600
Completely blind
Three diff visually impaired classes of athletes
Lots of diff amputee classes
S10
S9
S8
Lower the class the more impaired you are
S10 is right at the top with the able-bodied
Is there anything else you have a passion about?
Speaking
Swimming is something I can't do the rest of my life
In 2012 I'll be 24
I want to have a family
Made me more gracious
I would not get a cure for this
Great Britain -- try to genetically alter the DNA
Maybe later on I would want to change things
I want to drive my kids to school or own a boat…
Right now, I'm okay. This is me…

MUSCULAR DYSTROPHY

Speaker = Kerry Beach - her son has "Duchenne Muscular Dystrophy"
http://www.mda.org/disease/DMD.html
Common and severe form of MD
Over 40 types of MD
Diagnosis -- can't run or jump as well when young
When told, didn't know what that meant…
Age 3-5 slower
Age 5-6 progresses
Then really progresses at age 6
Chris had a scooter he could ride in
In 5th grade power wheelchair
Upper body is effected also, so he can't use manual
45k for the wheelchair (we did not pay for it)
12 in 6th grade
Sister at cary middle school graduated 8th grade
When diseases are progressive it's harder to deal with.
Here's your situation and you can grieve and make modifications
With us, Chris' abilities change often -- almost weekly
Going to the pool -- now he can't stand in the shallow end
We did not realize how limiting the wheelchair is
She also wants to make the point that there's a lot of social isolation
Sleepovers, shopping and movies are all hard in 350 pound wheelchair
Can't visit a friend unless has wheel-chair accessible
How many of you have homes that are accessible? (Abby L)
Snow days are also difficult
Sees all his buddies with sleds outside
Enjoy what you are doing, but realize how much is going on under the surface
Week to the beach is out for Chris as well
Spends a lot of time at home
Texts people and people can come to out house, but teens like to be out and about
He can't jump from one thing to another
Dog - Java - is his best friend
Java is a service dog; similar to a guide dog
If Chris drops his pencil, that's a huge deal
Java picks it up for him
She knew over 80 commands when they got her.
Can turn lights on and off
Unless lock glass door, Java can come out front
She is very bonded to Chris
Java comes down and greets him at the door (waits by window)
Java can sense that the family is going on trips
She's attached to his wheelchair and goes to school with him
Question: do service dogs get fat b/c not as active?
You have to maintain the dog in a certain range
Health reason
Maximize service life of each dog -- keep em healthy
In the last 150 years as we've moved from agriculture, dogs can become couch potatoes
Java will retire at 8-9 years old, and we worry about how she'll deal with "retirement"
How get Java?
Chris was diagnosed age 3
Put Chris on waiting list at age 4, long before he needed one -- on the list 5 years
2 week training camp -- Chris is put into a category to match you with a dog of similar personality
Trainers do same thing for a dog…
Can't show her doing a command, because that confuses the dog
Am I working here? What's going on?
In the nursing home where Chris volunteers, she can be petted
Getting Chris help in the middle of night, it's a specific command
Dog draws people to him
How do you get a dog?
Is it based on need?
It's based on a marketing decision -- MilkBone is the sponsor
New Sam's Club is opening -- they need marketing attention -- let's go to the list of kids in that city
Business, marketing and money decisions
Kids with MD take steroids -- seems to help
Research takes decades
Steroid off the internet, not marketed in the US (not enough $$)
Legal is the same as for service animal
Anywhere but ICU, I presume
When there's trouble, the lawyers contact the violators - generally to educate the people
Starting to see a trend to service monkeys -- better for picking things up than a dog (has to use mouth)
Trainer was bonded to Java -- how do they give him up?
Trainer says: "You have to be doing it for the people rather than for the love of the animals"
Do umbilical cord training 24 hours a day for a week
Transfers bonding to Chris
How does the 14 year old deal with Java?
She's not supposed to pet him
Java wants to bond with the alpha in the family (mom)
Got Java when she was 2, so she's five now..
3-4 more years left to work
Checkups not really enforced, but bring to regular weigh-ins (4x per year, I think)
Did you get to name her?
No, the trainers do that.
She was in the coffee litter
Java, Kona, Latte, etc…
Most amazing command?
Lights on and off
Most useful?
"Go get mommy"
Funny story?
Java has a shoe fetish -- she steals shoes
Yesterday after church she wanted to get a shoe and tugged and took the flip-flop off his foot
Final word: if you see someone in a wheelchair, please go up and ask them
Most of the time people are completely comfortable and would rather have you ask questions than walk by and stare
Final questions
Why did Chris get this?
As it turns out, mom is a carrier
Can there be a test for other daughter to see if she's a carrier as well?
Yes, but if she wanted to find out, she might get discriminated against by insurance
Might be a pre-existing condition
Females tend to be asymptomatic
She might want to take measures to ensure that she has a girl
A bit more about MD
Neuro-muscular disease
Passed from moms to sons
Extreme weakness that progresses as kinds get older
Primarily strikes boys
1 in 4000 boys are diagnosed per year in the US
Lose use of upper body in mid-teen years
Therapy:
Steroids for strength
Meds to keep heart strong
Hard for him to get exercise, so try to take him swimming
Stretching exercises for legs (so if there is a cure, he'll be able to use legs again)
Also, sitting in chair hurts spine
Weight-bearing exercises keep bones strong
He can't do that so he takes meds that people with osteoporosis take
Steroids stunt growth and make you bigger
He was a little stringbean and now he's not
Types of MD vary a great deal
Might not know someone has it
Just upper or just lower
Late onset (50s or 60s)
How does sister get along?
Helping Chris out is a lot of work
When go somewhere, there's a remote to van and ramp
Sis is for the most part very helpful
But as with any siblings, they push each others' buttons (but it's not physical)
Q: does Chris do wheelchair sports?
Yes, on a wheelchair hockey team -- playing at RBC center

Tuesday (Day 6)


Dance


The video we started with from the 2008 Paralympics
(thanks Kourtney)

Discussion with Ms. Ward-Hutchinson:

Victoria Marks is the choreographer

She likes to use people not trained as dancers

This company grew from a woman who had short hair in a wheelchair

She was a ballerina and was dropped in a lift and paralyzed

She was so connected to dance as a part of her life and she did not want to stop dancing

Adam Benjamin joined with her

Access Dance in California

Cleveland Dancing wheels

(find links to these companies)

London -- Candoco Dance Company

Woman with polio started this company

Vicky Marks -- trying to show that there are so many diff ways of seeing people and of seeing dance

peeling back the grass and seeing people looking down on them
wiping the sand to see
mirrors at the end are reflections of seeing

message: the way we see people -- what we see on the surface is not always the whole story

Try to go beneath what's on the surface. When you see someone in a wheelchair, that's not the whole story.

Going around the CA campus on wheelchairs. It's really hard to do it.

Going to bathroom and trying to wash hands, eg -- sinks are high up

Some ramps are really steep.

If you are thinking about being an architect and designing spaces, think about how there will be all sorts of people coming into those spaces.

Torn achilles this spring in a book 6 weeks

Then I realized this is only temporary for me... there are people who live their lives with a disability and deal with it and are so positive about it.