Day-to-day

Tuesday (Day 1)
toc 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? [] []

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 [] 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: [] 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? [] 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

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 -- [] 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) [] 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 [] 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 [] 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 9000]people 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 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 [] 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…
 * 1) 24 what do you need?

MUSCULAR DYSTROPHY

Speaker = Kerry Beach - her son has "Duchenne Muscular Dystrophy" [] 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

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.