Perseverance

Over the holidays I was staying with my mom and an interesting thing happened. She has this big drawer attached to her television stand that holds her dvds and VHS tapes. She had piled up too many of the VHS tapes on top of each other, and one of them slid off and fell into the bottom of the drawer so the drawer couldn't close. The way the drawer is designed, you can't get your arm in there to retrieve the tape. A large arm won't fit and a small arm will fit but isn't long enough. My brother in law told her she would have to empty out the entire drawer and then he could take the drawer apart and get the tape. Not the worst thing in the world to have to do, but not fun either.

So I was determined to find another solution. I thought if I could find something that I could slide under the tape and stand it up, then I could reach it. I asked Mom if she had a working flashlight so I could see where the tape was, but her flashlight didn't have batteries in it. So I just had to feel around for it. First I tried this back-scratcher thingy that Mom had. But it was too thin and the claws on it couldn't grab the tape.

So then I thought of a spatula. My mom had one with a wide base, like for omelettes. I felt around for the tape, slid the spatula under it, lifted it up, reached my other hand in, and...success! I got it!!

I probably worked at it for about fifteen minutes. During that time Mom kept urging me to quit. She didn't want me to get frustrated. But I didn't get frustrated. I told her I was fine; I wanted to keep trying. It probably sounds stupid, but I was excited when I got that tape out. Not only because I actually retrieved it, but also because I figured out how. And I did it by myself.

I wasn't raised to be resilient. I was raised to whine when I couldn't do something and it would be done for me. I didn't have to ask and I didn't have to try at anything. Now I am discovering the joy in trying, and succeeding. How good it feels to figure something out for myself, and not having to rely on anyone else.

librarianintx

Steve Clark

Hard to believe, but co-lead guitarist for Def Leppard, Steve Clark, died twenty years ago today. He was a brilliant guitarist and a kind soul, and his legacy lives on in the music he helped to create.

librarianintx

Glee podcast

I'm having a good morning so far, so I hate to rant, but I'm listening to "A Gleeful Podcast" - my first time to listen to a Glee podcast. I was so excited to listen to the discussion of the "Grilled Cheezus" episode that I love so much. So far I'm mostly just really annoyed, especially with the guy who's talking, Josh. He is so critical! And he doesn't get his facts straight. Finn didn't sing the Billy Joel song, Puck did. Finn wasn't in the hospital scene at all. And Chris Colfer didn't lose the Emmy to Aaron Paul from "Breaking Bad," because that was the drama category. Chris lost to Eric Stonestreet from "Modern Family." I understand no one's perfect, but if you're going to discuss a show, the characters and the people who play them, at least know what you're talking about most of the time.

I don't expect everyone to have the reactions I do. And I can see some validity to some of his criticisms. But I just felt like he was way too picky. Does he even like the show?

Now I'm listening to the podcast on the Britney Spears episode. Nearly ten minutes into the podcast, and they have not said one word about the episode yet; they're going on and on about other stuff. These people come across as quite self-absorbed. I'm disappointed. I expected people who make a Glee podcast to really like the show, and what I've heard so far is a little praise and a lot of pickiness.

Maybe I need to do a Glee podcast. :)
librarianintx

more on Glee

from last week's episode:
Mercedes to Kurt (in the church): "I know you don't believe in G-d. You don't believe in the power of prayer, and that's okay. To each his own. But you've gotta believe in something. Something more than you can touch, taste, or see. Cause life is too hard to go through it alone. Without something to hold on to. And without something that's sacred. Anyway, Kurt, this song is for you."

From this week's episode:
Kurt to his father: "I'm the only openly gay kid in my high school. In this town. I mean, why can't I walk hand-in-hand down the hall with the person that I like? Why can't I slow dance at my prom?"
Burt: "You think I don't want those things for you? I do. You know, until you find somebody as open, and as brave, as you are, you're just gonna have to get used to goin' it alone."

Also from this week's episode:
Rachel to Kurt: "I know you're lonely. I cant' even imagine how hard it must be to have feelings in high school you can't act on for fear of being humiliated, ridiculed, or worse...That's 12 people who love you, Kurt, for being exactly who you are. I know you're lonely, but you're not alone."

After last week's spectacular episode, I was a little nervous that this week would be a let down. Luckily, I was wrong. "Duets" gave the audience a little bit of everything we expect from Glee - laughter, heartbreak, surprises, conflict, and show-stopping performances.

Since last week was basically a total Kurt episode, I expected him to be relegated to the background this week. I am so glad I was wrong. Building on the feelings of isolation from last week, one of the major themes from this week's episode was Kurt wanting to sing a duet with the new boy in the club, Sam, as well as Kurt's belief that Sam "bats for his team." With the topics of gay teen suicide and bullying so much in the news these days, as well as the ongoing debate about gay marriage and "Don't Ask Don't Tell," Kurt's loneliness and frustration, communicated so brilliantly by Chris Colfer, were so vital for the viewing audience to witness. Add to this another poignant scene between Kurt and his dad, and a verbal argument between Finn and Kurt, with Finn asking Kurt to back off of Sam for the good of the glee club, and you've got a wonderfully complex mix of emotion and hot button issues for family discussion.

And while I'm on the subject of Chris Colfer (when am I not these days?) :-) let's talk about his two numbers in the show. "Le Jazz Hot" from Victor/Victoria...are you serious? No professional experience before Glee? So hard to believe. That was one of the biggest production numbers on the show to date, and he NAILED it! Wow!

And then at the end of the show, we are treated to a performance by two of the biggest divas on the show, singing together simply for the love of performing, not because they were trying to win the duets competition. Rachel's supportive comments and finally a smile from Kurt after so much pain made the Streisand/Garland homage of "Happy Days/Get Happy" an absolute joy to experience. Rachel beamed, Kurt exuded confidence, and their voices blended gloriously. It was the kind of performance that you witness with a smile on your face and tears in your eyes. This is what Glee is all about.

There was so much emotional depth to this episode. Kurt's plea for understanding. Rachel's altruism. Quinn's hesistant steps toward a new relationship. Sam's maturity for not breaking his promise to sing with Kurt. And in the surprise of the night, Brittany feeling guilty for taking advantage of Artie in hopes of winning the contest. I did not see that one coming. For Artie, sex is a more complicated issue. Here, the tables were turned, and the man was the vulnerable one who got played. For the first time we get to see Brittany as a person with real feelings, not the dumb blonde cheerleader. Oh, the tangled webs these kids weave. And the next few weeks will only yield further complications.

My main concern at this point is Kurt fatigue. Chris Colfer is so adept at communicating pain, and the writers are giving him numerous opportunities to showcase that talent. The character of Kurt is receiving quite a bit of sympathy and support, and the young man who portrays him is enjoying well-deserved praise and very early Emmy buzz. But there are already rumblings of discontent. "I'm tired of every episode being about Kurt." "I want to be entertained when I watch Glee, not look at Kurt's sour expression every two minutes." "Enough with the gay storyline, I'm sick of it." I'm not too worried yet, though. There have been Kurt-haters from the beginning, as well as Rachel and Quinn-haters as well. The haters are a small and not very vocal subset of the Gleek population.

Another surprise in the episode: Brittany and Santana's little makeout scene. Tame though it was, this is a prime time television show on a major network that families often watch together. While I'm happy to note that I haven't heard much criticism of the scene, I know how our country operates, and it saddens me to firmly believe that Kurt and his boyfriend of the future will not have an opportunity to display such affection for each other. I would be thrilled to be proven wrong on this point.

librarianintx

Glee

It was a profoundly moving episode of "Glee" last week. I'm still processing my reaction to it. For those of you who haven't seen it, find it on the Internet and watch it!! :)

In the episode, Kurt's dad has a heart attack and nearly dies. As his glee club friends do their best to support him by singing spiritual songs and taking turns praying for his father at his bedside, Kurt struggles with his grief and fear, as well as his firm belief that G-d does not exist. People in pain often lash out when loved ones are trying to help, and Kurt's frustrations with his peers' constant religious interruptions further alienates him at a time when he really needs his friends around him.

This episode was sheer genius to me. The writing was truly inspired. In typical Glee fashion, the dialogue went from laugh out loud funny to achingly poignant to rather odball.

Several of the cast members were given the opportunity to shine, but no one as brightly or dramatically as Chris Colfer. WOW. The level of despair and heartbreak he communicated was overwhelming. His rendition of "I Wanna Hold Your Hand" was breathtaking. I have said before that he is a scene stealer on this show. On this episode, he brought his craft to a whole new level. I can't believe this is his first acting gig.

So much of this episode resonated with me. Losing one parent and constantly worrying about losing the other. Feeling alone in grief and pain. And being treated negatively because your beliefs are different from the majority.

Kurt singing "I Wanna Hold Your Hand" was riveting enough. But there was another scene that really affected me. When Finn was singling "Losing My Religion," he walked into the library, and the camera panned to Kurt sitting in a chair, ostensibly reading, with tears on his face, as fellow students moved around him, going on about their lives. I lost a close friend when I was in graduate school. I remember sitting in the dorm study lounge, a book open in front of me, crying quietly, as people chatted and studied and laughed around me. I felt invisible, hurt, and terribly alone.

Glee is a show that can truly make you laugh one minute and cry the next. Its a show that both entertains and makes you think about larger life issues. People who haven't seen it probably think its a silly show about a bunch of high school kids. I think Glee is an important show as well as a fun show. I hope its around for a long, long time.

failure

"It is impossible to live without failing at something, unless you live so cautiously that you might as well not have lived at all - in which case, you fail by default" - JK Rowling

Its the fear of failure that often keeps people from truly living. Sometimes its also the fear of success that keeps people from truly living. In each case, its the fear of something.

Is anyone truly fearless? I don't think so. I think every person is afraid of something, but some people are better at handling their fear. And some people are afraid of things that they don't have to encounter on a regular basis, like snakes or giant spiders or something.

I have lived with fear all my life. Big fears and little fears. Everyday fears and one-in-a-million-chance-of-happening fears.

The other day I was watching a reality show, and a young man was about to parachute out of an airplane. As the camera showed him preparing to jump, we hear him saying in a voice-over, "I'm not nervous; I'm trying to get that nervous feeling." Intellectually I understood what he was saying. Nervousness fuels the adrenaline high that comes from engaging in such an activity. But emotionally - it was absolutely mind-boggling to me that someone was actually WISHING to be nervous. When you've spent a good chunk of the forty plus years that you've been on this earth struggling with anxiety, you can not imagine anyone wanting to feel nervous.

Considering how much I have struggled, I would say that I have at least made some strides in my life. I have a Master's Degree, and I have a job. I go out to eat and attend social events. I have more of a handle on my anxiety than I used to. But in other avenues of my life, I still let fear win.

I try to remember that we are all a work in progress.
I'm not the only one who struggles.
I'm not the only one who's stuck.

librarianintx

My Personality

Its cool how little things in life make me happy. Things that I think most people don't think about, or things that are taken for granted. Silly things sometimes. For example, I bought this food container from a friend who sells Avon. Its a three-in-one container; it will hold a sandwich and then two side items, like chips and fruit. The sandwich section has a cover on it, so when you clasp it together the three sections stay separate. Even though its a little bigger than an average sandwich container, it still fits in my lunch tote.

I am really happy with this food container. Now instead of having to take and later wash three separate containers for the cereal, cheese cubes (or hard boiled egg), and bread slices that I take to work nearly every day, I can just use this one container. Its great. I used it for the first time on Friday, and was darn pleased with it. I even bought two of them, so one could be drying while the other one is in use. Its made of plastic and supposedly safe for the microwave, but I'm not going to use it in the microwave. If I did, I could use if for even more types of food, even at home. But that's okay. Using it for lunch with refrigerated or non-refrigerated foods is good enough.

I guess finding ways to make your life easier is probably a cool thing for many people, so maybe I'm not so different. I think this is especially true for people with disabilities. When we find ways to maintain whatever level of independence we have been able to achieve, the result can be very exciting. Or when we have people in our lives that are willing and able to help us without guilt or negativity, that is very important as well.

Unfortunately the flip side of this easy happiness is that I am also easily hurt and frustrated by circumstances and individuals. Sensitivity can be both a blessing and a curse.

librarianintx

The Boys

You meet all kinds of people when you ride a city's paratransit service. Some passengers don't stop talking; some never say a word. Same goes with the drivers. The clients hail from all walks of life, and have varying levels of ability.

Sometimes friendships are formed during these rides, especially if you have a permanent trip and travel with the same person or people every day. Currently I have one relationship that has migrated from fellow client to friend. We talk on the phone occasionally. We have met for dinner a few times. We ride together Monday through Friday, except when the schedulers decide to mix things up and put us on different routes. We don't like that. I had another paratransit friend several years ago. I went to her house once, and she came to my birthday party. But she moved away and we did not stay in touch. The rides are much more enjoyable when you have a fellow passenger or driver that you can talk to and joke with.

My trips in the morning are long. I usually ride for about an hour and twenty minutes. After we drop off my friend, we pick up three guys. Two of them (F. and P.) live in a group home, and the other (J.) lives with his father and young niece. My driver and I call them "the boys," even though two of them are older than me. F. and P. are blind, and all three guys have varying degrees of autism and intellectual disabilities.

I have known F. and P. for more than thirteen years, although we have not been fellow passengers for all of those years. They were on my very first route, which probably lasted about a year or so, and then I started riding with them again about two or three months ago. I probably rode with them a few times during the intervening years as well.

Our schedule doesn't vary, unless the schedulers change it of course. We pick up J. first. When she's not running late, the driver takes the time to get out of the car and say hello to J.'s four year old niece. J. rarely talks during this part of the trip, but he waves a lot - to pedestrians, to drivers, and sometimes just to the air. Some people smile and wave back; some look uncomfortable or confused.

As soon as F. and P. get in the car, J. is constantly talking. They all spend time at a multi-purpose rec center for people with disabilities, although F. and P. also work for a few hours each day, performing menial tasks at different restaurants. P. goes to work before going to the rec center, a fact that confuses J. on a daily basis.

J.'s questions and comments are usually the same. "Who coming?" "Where born?" "When born?" "that man there" "Goin' work?" Day after day after day. F. gets frustrated and rarely responds. P. is patient and answers over and over again.

Our driver plays music in the car. We've heard that the radios will be removed next month, and we're all sad about that. We enjoy listening and sometimes singing a little. F. and P. know nearly every song. As soon as a song starts, they'll say, usually in unison, "The Four Tops!" "Oh, that's Chicago." "Stevie Wonder..." F. and P. are quite different. F. is white; P. is black. F. likes country music; P. likes disco. P. sometimes has a girlfriend that he spends time with at the rec center. But the two men are very close. They have had to move to different group homes over the years, and so far they have been able to stay together. P. is higher functioning than F. He looks out for him. Before they lived in group homes, they resided in different institutions. P. said the staff was often mean to him. They would take his food away before he was finished. He endured worse than that, but those stories are his. I haven't asked permission to share them.

One day I knew a song that F. and P. didn't. I couldn't believe it. It was Dexy Midnight Runner's "Come on Eileen." A one hit wonder.

F. has a discman that he listens to a lot. Every few days he'll ask me to change the batteries for him. He'll carefully hand me the player and the batteries from his seat in the front; I sit in the back with J. and P. F.'s hands will flutter the whole time I'm working. He tries to be patient, because sometimes it takes me awhile to dig the batteries out and get the new ones in. One time I put the new batteries in wrong, so of course the discman wouldn't work. F. reminds me often that I got it wrong once. He's not being mean. Its just his way. He always says thank you. Even days later he'll say thank you. His birthday was in August. I gave him a ten pack of batteries. His boss at work gave him an Alan Jackson cd. He is an Alan Jackson fanatic.

P. listens to audio books. I often wonder why he has a menial job. He organizes the silverware at the restaurant. I don't know him that well of course, but I think he can do more than that.

I wouldn't necessarily call myself a morning person. Sometimes I feel frustrated by J.'s constant questions, and having no personal space during the last ten minutes or so of the ride. But usually I'm not bothered at all. I kind of feel like a sister to the boys. When J. gets in the car I make sure he puts his seat belt on. When I get out of the car, P. asks if I'm riding the next day. I let them know in advance if I'm going to be out of town or taking the day off. They get upset too when the schedulers change up the routes. Our driver will usually tell me, "The boys missed you yesterday." Every day both P. and F. admonish J. not to move over until I am out of the car. "Wait J.! Wait!" they say protectively. "Don't push her out."

We take care of each other.

librarianintx

Transitioning to College blog

http://blog.govdelivery.com/usodep/2010/09/transitioning-from-high-school-to-college-students-with-disabilities.html

By Guest Blogger Jean Ashmore, President, Association on Higher Education and Disability (AHEAD)

It’s the time of year again when yellow school buses are on the roads, uniforms and school supplies are everywhere, and students and parents alike are excited and anxious about a new school year. Those years when a student switches schools are particularly salient, with much to be learned and encountered in the new school. This is especially true when a young person transitions to college. All college students bring along academic and social experiences and lots of expectations and concerns – none more, in my thinking, than students with disabilities. Let me share some particulars on why college transition may be extra challenging for students with disabilities and give some suggestions to help make this time a success.

One of the greatest factors impacting a move from high school to college for students, who have received special education services during K-12, is that the laws regarding disability assistance differ substantially between primary and secondary educational systems. In providing resources and services for students with disabilities, colleges are guided by Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA), both of which focus on non-discrimination and rights of access.

On the other hand, special education in public schools follows the provisions of the Individuals with Disabilities Education Act (IDEA), which mandates what is to be done for students identified with disabilities that adversely impact their education. These differences can result in a student with a disability being disappointed and frustrated in college. At the college level, course requirements are not modified as they sometimes are in high school, homework isn’t reduced, tests are not routinely modified and for the most part, professors aren’t notified by the college about a student’s accommodation needs before classes begin. Note, I use the word “accommodations,” not modifications.

In college, accommodations are not modifications. Accommodations aid a student in accessing courses and tests, dormitory living, etc., but success is up to the student. That might sound harsh, but when you really think about it, it’s wonderful. This means in college, a student with a disability does the same work as his or her peers, earns grades of the same value, establishes himself or herself as a student heading to a good future rather than a person defined by a disability.

Because a disability may result in functional limitations for a student, the college will provide reasonable accommodations to reduce the impact of those limitations. Let’s say a person has a disability resulting in the inability to read print efficiently. Working with the student, the college’s disability resource office will explore what the student needs, such as large print, Braille, electronic texts etc. and then will work on providing those accommodations. Notice that the reading material and tests will be the same but the means the student uses to access them may be different. This is not Special Education under IDEA, rather this is at the heart of the Americans with Disabilities Act (ADA) as recently amended – providing access so a person with a disability can learn, work and live a full and productive life.

So if the laws governing college are based on non-discrimination and the provision of access through reasonable accommodations, and the laws covering K-12 Special Education are quite different and provide for things not covered by colleges, such as school buses, personal care attendants and modified curriculums, what’s a transitioning student with a disability to do?

First of all, educate yourself about how the differences between high school and college will impact you. Understand your disability and learn to self advocate. If you’re not sure about how to be a self advocate, talk to your parents and teachers. Practice giving a brief “info bite” with people you know to develop confidence for when you need to discuss things like accommodations at your university. Don’t let others do this for you – remember the great saying, “not about us without us.” Being defined by your interests, personality and accomplishments rather than those “dis” things is where you want to be. I really hope you’ve chosen your college because of what it offers academically. It’s important to know about the college’s disability resources, but check those after you know that the school matches your interests.

College can be likened to a job with certain KSAs – knowledge, skills and abilities. Having the right KSAs will make college successful for all students, but especially those with disabilities.

K – knowledge of what disability resources and services are available at the college and how the system works, knowledge of what you need and why and knowledge of your goals.

S – skills with adaptive technology (exposure and training on AT should happen in high school), skills in talking with people about your needs and skills to follow a schedule you develop.

A – ability to work hard to do the academic work, ability to self-advocate and a very important ability, being independent as a college student regardless of the supports or accommodations that you may need.

Although many of these suggestions are geared toward a student who has a disability, I think these words can also be helpful to parents and others inquiring about higher education for students with disabilities. College is the gateway to good careers and lifestyle options that everyone aspires to, but I would venture to say that college is essential for individuals with disabilities, especially those with profound disabilities. Unfortunately, employment statistics of people with disabilities are woefully poor. While a college education will not guarantee solid employment, it definitely will help in that direction.

In my own experiences as a director at a university disability resource department, I’ve met some of the most incredible students. Future doctors, engineers, musicians, teachers, lawyers and so many other exciting careers. The challenges for an engineering student who is blind may seem overwhelming to others but to that student, it’s business as usual – ‘What’s the assignment?’; ‘How will I do it?’; ‘What do I need to get it done?’; ‘When am I going to do it considering everything I need to and want to do?’…voila! The work gets done and a well earned grade results. The student who reads books auditorily or who devotes lots of time to reading print just does that to get the job done. For these students, their learning strategies have incorporated functional elements linked to their disabilities. They do not define them – they are simply the methods these students use to achieve their goals.

There are some great resources about college transition for students with disabilities. The Department of Education‘s brochure, “Students with Disabilities Preparing for Postsecondary Education: Know Your Rights and Responsibilities” (http://www2.ed.gov/about/offices/list/ocr/transition.html) is a good place to start.

My professional association, AHEAD (www.ahead.org), has a number of helpful resources, too. Add a copy of 100 Things Every College Student with a Disability Ought to Know by Johnson and Hines to those KSAs, and the student will be well poised for success. I can’t recall if the 100 Things book recommends it, but I’ll end this post with “know how to do or get laundry done (without Mom)!” Here’s to a great school year for everyone.

Jean Ashmore is the President of the Association on Higher Education and Disability (AHEAD) and the former director of Disability Support Services at Rice University where she lectured in Education Certification. With backgrounds in rehabilitation and school counseling, Ashmore’s career has entailed working with people with disabilities in various settings.

Posted by Stephanie B on Sep 7, 2010 8:45:49 PM in Education, Guest Blogger

End of article/blog

Transition is one of my key interests in the work that I do. Transition is so important for students with disabilities, and in my opinion teachers, counselors, and parents are still not doing enough to prepare students for the changes they will face when leaving high school. I received very little transition assistance when I was leaving high school, so I now endeavor to assist students and parents during this important time in their lives.

librarianintx

Biloxi

My first trip out of the state in years....

My mother and I visited Biloxi. We had a great time. Slot machines, gumbo and red snapper, friendly people, and beautiful views like this...

librarianintx

"Team Everest"

http://www.teameverestthemovie.com/

I watched this movie yesterday: "Team Everest: A Himalayan Journey." The documentary chronicles the adventure of a lifetime for a group of people with disabilities as they spend three weeks attempting to reach the base camp of Mount Everest. Five of the people in the expedition use wheelchairs.

Wow, what a movie. It is right up my alley. Its about perseverance, triumph of the human spirit, it has heart and humor, and it shows the beauty and culture of a faraway land that I will never have the opportunity to visit in my lifetime. I know that many people with disabilities do not like to be considered inspirational, but the people in this group are inspiring. They had a dream and were determined to see it come to fruition, and they didn't let anything stand in their way.

librarianintx gives the movie two thumbs up. :)

Fruit

I think its interesting how your taste buds change as you get older. I have never been a very good fruit eater. I like bananas and I like cantaloupe and watermelon, but I don't eat any fruit consistently. On a rare occasion I'll eat a few strawberries. I seriously disliked orange juice and oranges. I would eat fruit cocktail as a kid but that was about it. And I thought it was gross to eat fruit with protein like chicken or fish.

Now I find myself experimenting a bit more with food, including fruit. I really like orange juice now. Last night I ate tuna salad with a small bowl of canned peaches on the side...and it was good! I really liked the combination of flavors, the saltiness of the tuna with the sweetness of the peaches.

Did I just sound like a judge on "Top Chef"? LOL

A silly thing to blog about? Perhaps. But I'm trying to be more consistent with my blogging. To share my thoughts and observations - about everything from politics to food, and stuff in between. :)

Not a very thought-provoking post, I agree. But did it make you hungry? :)

librarianintx

Writing

http://www.bloggersunite.org/event/people-first-empowering-people-with-disabilities

BloggersUnite had asked for bloggers and writers to make a commitment to blog on Saturday, July 24th. The goal was to raise awareness about persons with disabilities, two days before the twentieth anniversary of the Americans with Disabilities Act.

I received a message through Facebook, so I went to the BloggersUnite web site, and signed up to participate.

But I didn't blog that day.
And I didn't blog the next day either.

I am embarassed to say that I have not blogged since May 24th. Even though I endeavor to blog at least a few times per week.

I keep a handwritten journal as well. As much as I like computers, my first love will always be archiving my thoughts using pen and paper. It is the only craft I partake in, since I have no artisitic ability, no affinity for music, and my eyesight no longer allows me to do needlework. I do feel guilty that trees are dying to support my addiction, but I must admit that purchasing or receiving a new journal affords me quite an exceptional high. Obviously its not such a bad thing to be hooked on, but I often have to avoid the office and educational supplies section of stores like HEB or Target. Back to School displays are especially dangerous. And lets not even discuss the "fine art of writing" materials at Barnes and Noble. Ornate journals almost too lovely to write in, beautiful pens in assorted colors, have I mentioned the delicate stationery and decorated boxes of notecards in assorted designs?

....deep breath

But I have not written in my journal as much as I'd like to, either.

And why?

Two reasons mainly, one practical, and one emotional.

The practical reason is pure and simple: time.

I have been raised to always compare my life to others, and therefore find myself lacking, so I am a natural at the sport. An example: A friend of mine is raising four children. Yes, he has a partner. No, he does not have a disability. Yes, he has two months off in the summer because he works at a school. Anyway, he arises at some ridiculous hour (4 am? 5 am?) and works out a gym. He tends a garden in his backyard. He actually uses those vegetables in recipes he creates. He performs in local theatre productions, and devotes time to auditioning and rehearsing for aforementioned projects.

I only work half time. No husband, no children. I have a cat, but other than trying to trip me in her quest to reach the refrigerator before me, because I MUST be on a course there with the sole intention of feeding her, she does not ask too much of me otherwise. I just have to keep in mind that the bed is more hers than mine, and if I leave my shoes on the floor that is considered an invitation for her to chew on them. As are my bare feet when they're outside the covers at any time during the night. Since I am sleeping on HER bed, after all. She, Goldie Locks. Me, baby bear.

But instead of blogging or journaling, my weekdays are spent travelling to and from work using the city's paratransit service. Let me see if I can succinctly describe my daily commute. Okay, here we go: one word. LONG. Hours spent, usually in the backseat, of converted police cars. There are no headrests in the backseat of cop cars. Does the police department care about the comfort of alleged criminals? No, and apparently the city's paratransit service doesn't either. Every day I have an important decision to make: try to hold my head up, risking a sore neck and abdominal muscles, or choose to go for the lean and try not look like I've slipped into a coma. The car is much preferable to the paratransit bus, however. I compare those rides to something you'd expereience at a theme park, a carnival, or maybe a bucking bronco at a rodeo. As long as I hold on for dear life to the seat ahead of me and beg the driver to go slow over speed bumps and road humps, I can usually make it to my destination without wondering if I've damaged any vertebrae.

Once I get home, my afternoon and evenings (and some weekends) are usually spent taking care of the daily household duties that my personal care attendant has been hired to do. In the roughly five months that this particular person has been working for me, she has been to the emergency room, one of her five children has been to the emergency room, her other clients have had emergencies, her mother has had an emergency, she has been in more than one car accident, she has run out of gas multiple times...and it has been raining. Not like a tornado or something like that. Just...raining. Even when she does decide to grace me with her presence, she apparently has her clocks set to pacific instead of central time, since our meeting time is three o'clock and she usually arrives around five.

So often there isn't enough physical and mental energy left for writing after the chores are completed. Energy and hours in the day.

So those are the practical reasons for my lapses in writing. I have other excuses too, like the daily phone and web cam chats with my mother, and the barrage of television shows, movies, and music that my entertainment-addicted housemate lures me into. The newest is a BBC show about three roommates who appear human, but in reality they are a vampire, a wherewolf, and a ghost. Ok, I know, but its actually good! Although I guess I shouldn’t use the phrase “in reality.” Even reality shows aren’t real.

But I digress. Moving on to the emotional component. Back to the competition thing (refer to page _ , paragraph _ , section _ ) I'm not good enough. My writing isn't good enough. Why bother? What's the point?

When I think of other people writing, I envision a scene from a romance novel or movie. A beautiful girl with long, flowing hair, in a flowing skirt, sitting on a mountain watching the sun rise (or set, I'm not picky on that detail), a serene look on her face, gliding her pen smoothly over the paper as she writes for hours without pause. Contrast that to how I (and probably many other people) write: in fits and starts, either with wads of paper on the floor and pens thrown across the room, or banging on the keyboard in frustration, howling as I pace the room, and disentagling the strands of hair from my fingers that I've pulled from my head....

Mmmmm...if they ever need a female wherewolf character for that show, I should audition. Except they'd have to hire a voiceover to do the actual howling. Not enough lung capacity.

My journey from childhood where my disability was ignored to present day life as an openly physically-challenged individual continues to evolve. The reasons for the denial are numerous and complex. My father was also affected by the neuromuscular disorder, but was not diagnosed until I was. I was sixteen months old; he was thirty-two.

No one can say I was adopted. Well, my older and only sister tried the baby in a basket on the doorstep story, but I knew it wasn't true. I have always been the female version of my father. Same long, thin face. Same ears - huge. Same sense of humor. Similar limitations.

My father worked long hours managing a jewelry store. His job necessitated moving the family four times in less than ten years. He didn't like vegetables, avoided going to the doctor, and stood for hours each day on leg muscles that weren't strong enough.

In the last image I have of my father, he is sitting at the dining room table, weak and shaking. He has been ill for a few days. My mother hands him a glass of orange juice, but he can't hold it. The glass falls, but does not break, as some of the liquid spreads out on the chocolate-colored carpet. My sister and I are hurried out the front door and off to school. By the next afternoon he is dead of a massive heart attack.

He was forty one years old.
I was nine.

Was my father's death the reason that my mother couldn't even utter the name of my condition until I was in my middle teens, and the accompanying conditions of severe scoliosis and malformed jaws necessitated two major surgeries in the span of three months? Or did the ostrich-like behavior (head in the sand) begin with my father and was simply continued after his death? Was it guilt on the part of my parents, because they knew there was something physically wrong with my dad and they never attempted to investigate? Why did they turn a blind eye to a possible genetic disorder?

I probably will never have an answer to my questions. My grandparents and my father are gone, and my mother has a very difficult time speaking about such matters. She only told me about three years ago that her father died of melanoma. Which of course makes my sister, myself, and my mother at higher risk for the deadly form of cancer. Would have been a good idea to know this, and to take more precautions, such as preventing the significant sunburns I had as a child.

Many people with disabilities talk about the societal struggles they've faced, dealing with mainstreaming in school, lack of friends, social isolation, bullying, employment problems, etc. But my struggles have been more familial rather than societal. Sure, I got teased as a child. I was always the smallest student, I had short, kinky brown hair, and an overbite of Grand Canyon proportions. Dodgeball and Red Rover are nightmares I don't want to re-visit. I rode a bicycle with training wheels until I was in the fifth grade, when I finally gave up on the dream of one day having enough strength and balance to ride a two wheeler. I had guys in high school pretend to ask me out, then laugh themselves silly, believing that I thought they were serious.

I knew they weren't.

And yes, I have had society-based frustrations, transportation and attendant care being the major ones. But by far my greatest journey has been accepting myself as a person with a disability, and learning to overcome both the denial of my immediate family and the hopefully unintentionally insensitive comments expressed by my extended family. Questions like, "When are you going to get a real job?" when I had been employed for several years in the professional, albeit half-time librarian position that I still hold today. Or "You should eat a banana every day" - this uttered by the well-meaning, clueless uncle who has been convinced since I was sixteen years old that my uber thin frame is due to anorexia.

Its very difficult to write about family, to expose these hurts and tell these stories. It was hard the first time I had pains in my chest that resembled pleurisy and my mother told me I was just nervous. I was amazed that when my brother in law's recklessness caused my foot to be run over by my own wheelchair, a security guard saw me crying and came over to inquire as my brother in law, sister, and mother all stood there laughing. Isolated incidents? Unfortunately, no.

Does my family love me? Without a doubt, yes. Do they understand me - my needs, my desires, my viewpoints - no.

I just finished reading a book called Thicker Than Water; it is a collection of essays written by adult siblings of people with disabilities. I have no idea what my sister would say if she contributed a chapter. My sister doesn't communicate her feelings to me, about anything. I am pretty much invisible to her most of the time. It hasn't always been that way. We never shared a room, but there were summer nights growing up when I would sleep in her twin bed and we would giggle long into the night. I don't know what happened to us, and I'm not sure she would be able to articulate a reason for her distance. Its probably complicated, but that's as far as I'm willing to speculate. Somehow I remain hopeful that our relationship could improve. Its never too late.

I think a big part of my optimism stems from the three daughters she and my brother in law have raised. For all the turbulence and lack of care I have often faced in their presence, I have received nothing less than complete acceptance and love by their children. One day I was complaining about how terrible my teeth looked in a picture. My youngest niece said to me, "I like your teeth. They are a part of who you are."

She was twelve years old at the time.

I aspire to be as intelligent, resilient, and capable as they are.

I worry that anyone who reads this will view my words as a pity party. Poor me, look at what I've been through. I hope you can believe me when I say that I am grateful. Grateful for the people in my life, grateful for the life I've been able to carve for myself, grateful for the independence that I've been able to achieve. I have amazing role models. My BFF is a woman who has the same disability I do. She escaped a life of true familial neglect that nearly took her life. She moved halfway across the country on her own, has been employed full time for twenty years, and is happily married to her college sweetheart. She is one of the strongest and bravest people I know, and her example has helped shape my destiny.

Every day I endeavor to practice resiliency, experience happiness, learn, grow, DO.

librarianintx

Lost

For six seasons I have liked and disliked, been frustrated and captivated by this show. For years I have sat quietly and listened while my sci-fi friends dissected, discussed, and theorized about Babylon 5, Dr. Who, the various Star Trek shows, etc. My first foray into these conversations was with Battlestar Galactica, as we talked about the social, political, and religious themes of the show.

And then came Lost.

I don't do scary. And I don't do gross. So the show almost lost me from the very beginning. But I was fascinated. I wanted to understand what was going on. I wanted to make sense of it all. I enjoyed being surprised every week, even though I don't usually enjoy surprises. I liked being confused, also rare for me.

I didn't always like it, though. I broke up with Lost as least twice that I can remember. I just got too frustrated with all the twists and turns. Too many questions and no answers. Too many new characters and new situations to keep up with. I gave up.

But I went back. I willingly got lost again.

At the heart of any show for me, sci fi or otherwise, is character development. You're going to hook me if you present me with characters that I can fall in love with, that I can care about, that make me want to tune in every week to see what happens to them. And Lost absolutely did that. Every character was so interesting, so compelling, so multi-dimensional. As one fan wrote, "There is a smoke monster in all of us." I don't necessarily like to believe that is true, but it probably is. Actually, I'd rather believe there is a Hurley in all of us.

Lost WAS about the smoke monster and the polar bears and the donkey wheel for me. But it was even more about Jack, Kate, Sawyer, Sayid, Hurley, Locke, Claire, Charlie, Aaron, Sun, Jin, Juliet, Desmond, Penny, Shannon, Boone, Rose, Bernard, Michael, Walt, Russo, Libby, Mr. Ecko, and the rest. And yes, it was even about Ben, Miles, Charlotte, Daniel, Charles Whitmore, and Eloise. It was about Jacob and the Man in Black. And of course it was about Vincent! Dare I say it was even about Nikki and Paolo? :)

I wish we knew the real name of the Man in Black.

Before anyone is amazed that I remembered all those names, I'll admit that I didn't. Even though in every episode they continually say each others names, I still had to look several of them up in wikipedia. :) And I still can't remember Ben's daughter's name. Arg!! Oh wait, its Alex. Yea! I remembered without having to look it up!

I have always said I'm not smart enough to be watching this show. I was confused all the time, including at the end. I don't know enough about mythology. I'm not a Christian. I was an English major for awhile in college, but I didn't get most of the literature references. But I kept watching. Because I wanted to understand it. And because I wanted to see what would happen next.

The way I coped with not understanding was to at least think I could try to remember everything that happened. So I started taking notes. I currently have notes for seasons one through four. I don't know if I'll go back and take notes on the last two seasons. I wonder if the story will become more clear if I do that.

So thank you Lost, for six seasons of incredibly smart, innovative, engrossing television. It was all worth the ride.

librarianintx

Yea, wifi!

Okay, it only took me nearly six months to do it, but I finally got the AT&T uverse wifi to work in the apartment! YEA! Three reasons why it took so long:

1) I've been busy
2) I tried a few times and couldn't figure it out.
3) Historically I can't figure things out on my own so I put off trying to do it.

Now before I get too excited, I d0 have to remind myself that:
1) The uverse installation man actually wrote out exactly what information I needed, but I overlooked it, and...
2) My wonderful computer friend gave me a big hint that helped me figure it out.

So I did not figure it out 100% on my own. But hey, 75% is still pretty exciting. I can count it as 75%, can't I?

Wifi rocks. I can now blog anywhere in the apartment. Well, I could do that anyway with my Blackberry. But typing is easier on a laptop than on a smartphone. I'm not the greatest typist on a laptop, but now I'll have more opportunities to practice. :)

It feels so good to figure something out by myself, at least mostly by myself. I was probably working on it for only about 20 minutes so far today. But when that webpage finally appeared after several failed attempts, I cried out, "Ahhh! Its working! I got it!"

Feels good to have something to cheer about today.
librarianintx

Technology and autism

http://www.theglobeandmail.com/news/technology/personal-tech/apple/for-autistic-kids-idevices-are-life-changers/article1530164/

When you enter Emily Buczek’s Toronto classroom, it’s like Times Square: Everywhere you look, there’s a new visual distraction.

A picture of each student is tacked onto a large, colourful map above his or her country of origin (Emily’s mug hovers over Poland).

There’s a shelf of well-loved toys – a slumped-over clown, a plush frog – and rows of picture books, among them Emily’s favourite: a cardboard volume of Winnie-the-Pooh stories.

All these diversions are there to keep up with students’ fleeting attention spans: Emily and her peers at Beverley School all have developmental and/or physical disabilities.

Emily, a profoundly autistic 13-year-old with an overgrown pixie cut and fingernails that have been cut or chewed to the quick, doesn’t fit the stereotype of an early adopter of the iPad.

But parents and educators of children with developmental disabilities – particularly autism spectrum disorders (ASD) – have celebrated its release. While the device was created mostly for media consumption, it has plenty of surprising uses for children with such disabilities.

Emily doesn’t have an iPad in her hands yet, but the learning curve won’t be very steep when it’s released in Canada at the end of the month – she’s already mastered the iPod Touch at school and at home.

It’s been a godsend, her mother Christina says. With an autistic child, even the simplest tasks can be emotionally and physically draining.

She recalls many days when Emily, who is mostly non-verbal, indicated she wanted to go shopping – but wouldn’t say where.

“I’d be driving her toward one store and pulling in and she’d be really upset because it wasn’t the one she wanted,” she says. “It’s wasting a lot of time, it’s a lot of frustration.”

But then she downloaded the iConverse app on Emily’s iPod Touch. One of many assisted communication programs available for people with disabilities, it allowed Ms. Buczek to load photos of her daughter’s favourite stores, set to audio recordings of their names. Now all Emily has to do is run the app and click on the button that corresponds with her choice.

While Apple has not yet revealed Canadian prices for the iPad (it starts at $500 in the U.S.), Ms. Buczek says a price tag of even several hundred dollars would be significantly cheaper (not to mention more portable) than some of the assisted communication devices currently on the market, which can cost more than $10,000.

Emily, like many kids with ASD, struggles with her fine motor skills, and a larger screen would help her navigate the apps with greater precision, Ms. Buczek says.

At Emily’s school, six teachers are using the iPod Touch with their developmentally-disabled students, as part of a University of Toronto study led by faculty of information professor Rhonda McEwen. Professor McEwen wants to see how it can help them communicate.

So far, their greatest use is easing anxiety among students, says Emily’s teacher, Ian Stuart.

The iPod Touch that he uses with his class has been outfitted with speakers.

“Touch the bee,” says a tinny female voice in one app. Displayed on the screen is a chocolate bunny, a bee and a shopping cart. Emily’s hooked index finger hovers over all three options before it presses down on the bee.

Mr. Stuart frequently uses apps like this to help Emily focus before she moves on to a new activity in class, since transitions can be very difficult for kids with ASD.

There’s a stack of deep blue one-inch binders in his classroom that are collecting dust. Before, whenever he’d head out with his students, he’d have to bring them along.

Inside each binder are pages of picture cards arranged in various sequences. A picture of a ball and swing followed by a computer means recess is followed by computer time.

Since Mr. Stuart has used the iPod Touch, he’s done away with the binders. All those sequences can be stored in apps on the device, which has become a magic wand of sorts.

“[When we transition], some won’t even look at me,” he says. “But then I’ll pull out the iPod and when they look at it and hear sounds it’s like an epiphany.”

Software developers who enjoyed success with accessibility apps for the iPhone and iPod Touchhave now focused their attention on the iPad.

The latest version of Proloquo2Go, the most popular AAC app in the iTunes store, was released at the start of the month to work on the iPad. As of Friday, it was ranked No. 34 overall in the United States among all 185,000-plus apps.

It can be used by people with disabilities – particularly non-verbal ones, many of whom have strong visual memories – to express their wants and needs.

“It’s just a game changer,” Samuel Sennott, co-creator of the app, says of the iPad. “It’s … [a] portable, table-top solution for people with physical impairments, people with visual impairments. You can see more on the screen.”

For Stacie Carroll, another teacher at Beverley School, there’s another perk to using these gadgets with students: “It’s the cool factor,” she says.

“This is their world. They pick up a cell [phone] and they know what to do with it.”

Whether they’re using an iDevice for scheduling, learning or easing anxiety, the key is that they blend in with other kids, she says.

She uses eight apps regularly with her students, including a few unusual ones. She shows off iSeismo, which graphs even the slightest movements. She’s used it teach her class – a rather fidgety bunch – how to sit still and control their body movements.

Both she and Mr. Stuart say they see great potential in their classrooms for the iPad and its larger interface.

“A camera on [the iPad] would make it nearly perfect,” Ms. Carroll says.

Anissa Hersh, a speech-language pathologist on the ASD team at the Hamilton-Wentworth District School Board in Hamilton, says she’s interested in seeing how the device might benefit the students she works with as well.

“You have a whole generation of adults now who were never taught independence,” Ms. Hersh says. “If you have this technology, and know how to use it, the idea is that down the road, [they] can use it in their work field.”

Alex Stephens’s five-year-old son Luc has ASD and is “completely infatuated with computers,” he says. He’s an expert with his father’s iPhone, which works as both an entertainment device and an educational tool.

Mr. Stephens can barely keep up with all the unanticipated expenses that come with his son’s disability: special vitamins, speech therapy and social therapy.

At the moment, an iPad is a luxury he can’t afford, he says. “But if I were convinced it would help Luc, I’d buy it in a heartbeat.”

End of article

My "hair trigger" effect

http://pagingdrgupta.blogs.cnn.com/2010/04/07/ultra-sensitive-its-in-your-brain/?hpt=T2

Ultra-sensitive? Its in your brain.

By Elizabeth Landau
CNN.com Health Writer/Producer

If you are particularly sensitive to the world around you - whether it's music, caffeine, other people's emotions, you may have a personality trait called "sensory processing sensitivity."

People who are highly sensitive in this way tend to look and observe and process things deeply, as opposed to boldly going ahead, says Elaine Aron, professor of psychology at Stony Brook University, who helped pioneer research on the subject in the 1990s. Having vivid dreams and being aware of subtleties in your environment are also characteristic of this temperament, she said. Take this quiz to see if this fits you.

Now, Aron's group has shown evidence in the brain that these people are more detail-oriented. The study is published in the journal Social Cognitive and Affective Neuroscience.

Researchers used functional magnetic resonance imaging (fMRI) to look at the brains of 18 participants. They found that people with sensory processing sensitivity tended to have more brain activity in the high-order visual processing regions, and in the right cerebellum, when detecting minor details of photographs presented to them.

"They are better at noticing subtle details in their environments than people without the trait," said Jadzia Jagiellowicz, lead author and doctoral candidate in the department of psychology at Stony Brook University.

Sensory processing sensitivity has been associated with introversion, but only loosely - about 30 percent of highly sensitive people are extroverts, Aron said.

Highly sensitive people probably make good counselors and recruiters, said Jagiellowicz, because of their attention to detail. They are able to more deeply process details as well as emotions, which are good skills in these professions. Accounting, which requires taking in a lot of information at once, may also be a relevant field, she said.

But the study showed that highly sensitive people do not quickly take in these details; in fact, they spend more time looking at them, so a job that requires a quick assessment of minutiae may not be the best fit, she said.

End of article

My comments: This article confirms what I finally figured out a few months ago. I'm simply wired differently. Its not my fault and I don't think I can fix it, but I can work on my reactions to the stimuli.

I can't remember a time when I haven't been on a "hair trigger." I've always been super sensitive. You look at me wrong and I feel like crying (and often do). Loud noises freak me out. I have a severe weather phobia. I have never reacted well to change. I worry obsessively.

But I'm working on all of this. I'm not autistic, but I can understand how scary changes in routine are to someone with autism. I used to be a slave to routine. I'm endeavoring to be more spontaneous. I'm finding that change can be exciting. I'm learning to roll with life.

"In three words I can sum up everything I've learned about life. IT GOES ON."
Robert Frost

librarianintx

Glee cast on "Oprah"

This was a question from the audience that didn't air on the show:

Q: "For me it's refreshing to see someone who's not able-bodied, as it were, on TV. I'm curious about the reaction you've gotten from viewers in terms of your character [Artie]."

Kevin McHale (Artie): "I'll reference a story that happened last weekend. A woman came up to me and she was saying her 16-year-old son is in a wheelchair, and he became obsessed with the show. She's like, 'I started reading books after the 10th time [he watched] the pilot episode, because I was over it. ... Me being the mom, I couldn't figure out why he liked the show so much.' It was the first time that her 16-year-old son had seen somebody in a wheelchair, representing his people, on TV. He'd watch the show and be like: 'That's my boy. That's my boy.' That right there, that's what it's all about. We are all playing somebody that somebody can relate to, and it's great. I'm so honored and proud to play that part. And they do an incredible job writing it, and it's just fun to sit back and do what they say."

I am very proud to say I am a "Gleek." I have been a fan of the show since I saw the first commercial for it. I love everything about it...the humor, the fun, the singing, the dancing, the heart, and of course the message...that its okay to be different, that everyone is different in their own way, and when we celebrate our differences, we often find our commonalities. I think just about everyone who watches the show can find a character they relate to, and that's one reason why the show is beloved by people ages seven to seventy.

I think all the characters are great, I have a very healthy crush on Mr. Shu, but my favorites are Artie and Kurt. Even though I did not start using a mobility device until I was in college, and even then I didn't use it all the time, I still feel such a connection to Artie. I am so proud of the show every time I see Artie front and center in the choreography, moving around the stage like everyone else in the choir, including participating in partner dancing. I love the fact even though he's not considered one of the "hunks" of the show, he is arguably one of the strongest male singers in the cast, and receives more than his share of the solos. It is so important having a major character with a disability in such a popular show. Its important for people with disabilties to see someone they can relate to, and its important for able-bodied people to see a portrayal of a healthy, active, intelligent, creative, talented person with a disability. No, the actor who plays Artie does not have a disability, and yes, I wish the show would have hired an actor with a disability. But Kevin McHale does a terrific job.

The character of Kurt, played by the talented Chris Colfer, is another important character to have on this popular show. Kurt is a proud, strong, confident gay young man, and arguably the most popular student in the choir. He steals every scene he's in, whether it be with a wink, a snappy one liner, or his incredible voice. The scenes with his widowed father are groundbreaking, whether his father is fighting for his son to have the opportunity to sing the usually female solo in a performance, or Kurt is saying he needs to remove his designer sweater before he lends a hand at his dad's auto repair shop. Kurt even joined the football team for a short time as the kicker.

Its important for 16 year olds and 42 year olds, and everyone in between, with and without a disability, to see someone like Artie on their tv screens. And its important for 16 year olds and 42 year olds, and everyone in between, gay and straight, to see someone like Kurt on their tv screens.

None of these characters are stereotypical. They have been created and are portrayed week after week in the way that reminds me of the famous quote from the movie "The Breakfast Club": "But what we found out is that each one of us is a brain...and an athlete...and a basket case...a princess...and a criminal."

librarianintx

SCORE! Cool! Of course, I'm usually too verbose to blog by texting. But it will come in handy sometimes.

Let's see if this works. I attempting to blog via texting. Here goes....