Nonverbal Learning Disability & Podcasting 101
"THE ODD BIRD at Microsoft N.E.R.D., Cambridge, MA, USA" by Tracy Heather Strain
Recently, I attended Podcamp Boston, a two-day unconference about podcasting, blogging and other social media platforms that I’ll be using for THE ODD BIRD/NLD Documentary Project. Unconferences are very popular within social media circles these days, because they allow media-makers to come together to share their knowledge with one another for free or at a reasonable cost. Since multimedia is changing rapidly, I’ve been going to a number of these events this year in order to keep up with the latest information. I’ve also been talking to other filmmakers one-on-one, learning new skills and honing old ones so that I can expand this blog into a multimedia production. I even got myself a moderately priced DSLR camera that shoots excellent digital video as well as a microphone, and I’ve been practicing. (My mother’s been a fairly patient practice subject and model.)
I wanted to share with you some of what I learned at Podcamp, because I’m really excited about using this information creatively. Interestingly, I picked up some tips that helped me get around a few of my NLD symptoms there!
Ready to Work: These are some of the tools I carried around with me for two days. All I really needed was the pen and paper, but online access was useful, and caffeinated tea certainly helped compensate for the early morning drive to Cambridge, Massachusetts on Saturday!
The session “How to Make the Most of Podcamp – Even for Introverts” was geared toward anyone who finds networking difficult, but when you have NLD and don’t read body language and facial expressions well, schmoozing can be doubly difficult. Here are some tips I learned about how to network in your own, introverted and perhaps socially awkward way:
- Prepare yourself. In the days before the event, check out the online schedule and list of attendees for professional bio’s and website links. If there’s someone you’d like to meet, send them a brief email telling her/him that you hope to see them there. S/he will remember you, and you might feel more comfortable once you have your face-to-face encounter.
- Don’t join the crowd. At the event, approach the person standing alone and start a conversation. You’ll only have to read body language and facial expressions one person at a time.
- Stand by the food. People love to eat at these kinds of events. While I was snacking, I met a man who has a company that provides services to people with developmental disabilities. He was quite interested in hearing about my project, and we exchanged information. Tracy Heather Strain, one of my executive producers, met a woman who also has NLD. Tracy made sure that we met, and I hope to get together with this individual again very soon. You never know who you’ll encounter!
"Corey Seehus, Brain Cells Inc, USA" by GE Healthcare
Finally, some new research on nonverbal learning disability: In the April 26, 2011 issue of the Journal of Child Neurology, a new study conducted at Michigan State University (USA) reports that brain cysts have been detected in a significant number of study participants with NLD. These results came as a surprise to lead investigators, and they are a significant finding for a neurological disorder that could use some close attention.
In the article, Presence of Cysts on Magnetic Resonance Images (MRIs) in Children with Aspergers Syndrome and Nonverbal Learning Disabilities, Margaret Semrud-Clikeman, Ph.D and Jodene Fine, Ph.D state that they placed 78 children into three disparate groups: those previously diagnosed with NLD (28), those previously diagnosed with Aspergers Syndrome (26) and a control group composed of kids who had no symptoms of either disorder (24). Each participant was given standard neuropsych testing, including the Weshscler Abbreviated Scale of Intelligence and Woodcock-Johnson Achievement Test-III, and underwent a Magnetic Resonance Imaging (MRI) procedure.
What they discovered was that one-fourth of the individuals with NLD—male and female, between the ages of 9 and 13 years—had benign cysts or legions “in the occipital/cerebellar or parietal regions” of their brains. Only one participant in the Aspergers group and one in the control group had a benign brain cyst present.
While it was expected that children with nonverbal learning disabilities would show structural differences that could be measured with advanced data analytic techniques, it was not expected that these children would show gross abnormalities readily detectable by neuroradiological review…[or]…that these structural abnormalities would be present to a larger extent in consecutively recruited children with nonverbal learning disabilities compared with those with Aspergers syndrome in controls.
It’s interesting that these cysts were found in regions of the brain associated with visual-spatial perceptions that people with NLD have difficulty with but those with AS generally do not. Semrud-Clikeman and Fine acknowledge that more research is needed to identify the causes of NLD and explain the role these cysts and lesions may play within the disorder. They also have not determined what’s going on inside the brains of the remaining three-fourths majority of children with NLD who took part in the study.
We should all be encouraged by this research; however, more studies need to be done on adults with NLD as well as children. Please press on Drs. Semrud-Clikeman and Fine.
[This article is expensive to download from the Internet, but you can access it at a college or university library that carries the Journal of Child Neurology. If you don't have an academic library near-by, perhaps you could get together with other NLD-ers or parents to purchase the download and share it! ]
"Courage" by Brandon Fick
It’s been quiet here at THE ODD BIRD camp without a blog post in sight. I’ve been less an eagle than a chicken these days, inwardly doubting whether a public outing on the Internet instead of using a pen name was the right action to take. Some NLD-ers I’ve spoken with lately tell me they’re adamant about not disclosing their disability out of fear that they would lose job opportunities if they did so or alienate themselves from other people. I worry about this too, but I’m out now, and there’s no turning back. The Internet doesn’t allow you to sweep your words into a pile and burn them into oblivion. What’s out in the ether has a very long shelf-life. Only time will tell just how our public and private lives will be affected by this kind of online sharing and exposure.
Just last week, I was speaking to a coworker at my retail job about fear, telling her I felt frozen and angry about feeling this way. She said that self-doubts arise when we’re closest to taking action. Fear keeps us busy, subconsciously preventing us from accomplishing what we’ve set out to do. It’s not a new concept: people have told me this often. This time, however, I was ready to actually hear it.
What’s interesting is that during my head-in-the-sand hiatus, I attended three media conferences in a four-week period that all had a similar theme: don’t wait for validation from others; forge ahead with your own creative work. The Internet is an accessible platform, and there’s no better time for me to work on this project. So, fearful or not, I’ll be expanding THE ODD BIRD into a multimedia blog in the coming months that includes short video and audio pieces. I won’t say more about this now, except that a full documentary film is still in development and will remain an integral part of the project.
To see individuals in other countries risking their lives to end oppressive government practices forces me to realize that what I’m risking by openly blogging about NLD pales in comparison to what they’re trying to achieve. Also, I’m far happier as an out of the closet filmmaker and blogger who wants to change the way societies view neurological disorders than an anonymous individual punishing herself for having one. See you soon!
Too Much Social Media Exposure, or Not Enough?
"Jelly Fish" by Nick J. Webb
I’m in a funny kind of limbo lately that leaves me wondering whether the next job I go after or the next friendship I attempt to make will be thwarted by all of this social media exposure. Launching and maintaining this blog have been risky acts (although nowhere near the scale of risk other people have been taking lately), and I might feel the negative affects of doing so for years to come. I’m not regretting my actions. I thought long and hard—perhaps too long and too hard—about outing my NLD before I actually did so, and I’m really happy I took the chance. Blogging’s my new love, and I’m absolutely thrilled to be venturing back into documentary filmmaking and into the realm of transmedia storytelling to expand the reach of THE ODD BIRD-NLD Documentary Project and my creativity.
However, people are really skittish about brain disorders, often placing everybody who’s got one into a lumpy glop of psychotic stew to be avoided at all costs. This is sad because, in the case of nonverbal learning disability, just having some basic understanding of the way in which an NLD brain operates could eliminate a good portion of the communication problems that exist between those who have it and those who don’t.
I don’t understand why being cognitively different should be considered problematic, but it is. Divergent thinking should be fostered and encouraged as a way to create new solutions for old problems. It shouldn’t be deterred. We all need to respect how variations in brain wiring allow us to think and behave differently from one another, just as we need to respect the cultural differences that influence our thoughts and behavior patterns. Then perhaps those of us with NLD and spectrum-related disorders won’t be considered off-putting to neurotypicals, and we won’t react defensively when feeling confused and misunderstood by others.
Why am I bringing this up again when I’ve blogged about this before? Well, I did a little bit of ego surfing on the web about a month or so ago. (You should Google yourself from time to time just to monitor the information that comes up.) Although it’s now been removed, here’s something I found for me: “Lillian Baulding has recently corresponded with a psychiatrist.” Yes, Lillian Baulding did recently correspond with a psychiatrist—more than one. I’m contacting clinicians to hear their thoughts on NLD and find out if there’s any new research pertaining to it in progress. I’ll continue to correspond with psychiatrists, neuropsychologists and other mental health professionals as my research continues.
This post appeared to be placed on the Internet by some sort of spamming site with spyware. I didn’t click on the link, because that’s exactly what they wanted me and anyone else who Googled my name to do. It was probably just another devious way to extract personal information from others. Hopefully, someday neurological and mental health issues will be treated with respect, not something to be ashamed of or as inflammatory bait to get people to open up some malware link.
Anyway, in spite of my concerns about social media exposure, I do think it’s a good thing. It can raise awareness of critical issues and events rapidly and needs to be made openly available to everyone.
I’m attending the DIY Days conference in New York City on Saturday to learn more about how to make this project a transmedia experience that reaches the largest global audience possible, and I’m looking forward to it. I’ll be doing some networking there—something that’s not intuitive for many NLD-ers. However, I’m getting much better at it, learning from socially savvy friends and colleagues who are extremely good networkers. I’ll let you know what happens.
Alright, that’s enough. Here’s a clip from the animated film Mary & Max. It’s about an old-fashioned, pre-Facebook correspondence and trans-continental friendship between two social outcasts that made it to Sundance a couple of years ago. The story involves our dear cousin Aspergers—I know some of you have been diagnosed Aspie as well—and the animation is absolutely amazing! See you next time. Check in with me here and here or leave a comment on the post!
Change is Gonna Come…
"Alcatraz - Exercise Yard Exit Door 'Sailing Away'" by David Paul Ohmer
My mother is selling her house and moving. Because I live with her, this means that I’m moving too. She’s going to California. I’m going some place else. I’m happy—her house has been an albatross around her neck since my father died, with the maladies beginning in the driveway four days after we buried him. I can’t say what happened was due to the funeral home publishing the address against our wishes, but the police officer who came out the night her Honda was stolen said it’s common for thieves to peruse the obituaries and prey upon mourning family members while they’re preoccupied by grief. We were preoccupied. We were tired. Even the dogs—although never so great at the watch dog thing—slept. Still, the car was locked and alarmed when they broke in.
When we finally did wake up, we heard and saw everything too late: the tires catching and slipping on a patch of ice—two young white men giving the car a push, then running away while the wheel man sped off. Two weeks later, they found it by a canal, stripped of everything it needed to be a car. What an unthinkable and heartless act you three guys pulled off. You never even got caught.
Not long after that, the furnace died. Other things have happened over the past few years: the water heater cracked (yes, every one’s eventually does); the hill on the side of the house caved in and slid down; a raccoon decided to have her babies in the chimney—shredding the new roof in the pains of labor; the city drained the man-made lake behind the house, killing off a small and lovely ecosystem with fish and snapping turtles in the process. There’s an ugly crater where there was once pretty water, and the value of the house has plummeted further down. Who would blame my mother for wanting to move to a condo or apartment in a warmer climate where home maintenance is not the burden of the day, everyday?
I grew up in this house, but I haven’t always lived here. I had a life away, but I returned. I can’t say I’ll miss the place, it’s situated in what I call an “Oh” city: kind of dull, kind of depressed. If you’re asked and you tell people you’re from an Oh city, their response is often a hesitant, “Oh—I used to buy drugs there,” but it’s not all that bad. I never bought drugs here (never even saw a drug dealer), and I guess you can raise kids happily and safely in this city if you have them and you really want to. My parents kind of did.
I moved back here when my father was living but dying, and I did things around the house that helped. I mowed the lawn—my rows were NLD crooked, but the job was done. I baked sweet things to entice him to eat and took him to Tufts Medical Center for Gamma Knife brain surgery. (Please note that on the day of his pre-op appointment, the office was crowded–standing room only.) I even helped my mother buy a new car and got her a good deal, too. All that useless car research I love to do finally came in handy. The salesman at the dealership even said that I was good. Maybe he lied, but I don’t think so.
But now, I’m no longer all that useful. The kid across the street mows the lawn. His rows are straight. He doesn’t have a bad back, and I bet he’s not hanging about, over-thinking what he needs to do to make adult life with NLD really work.
I’ve focused on me a little too much, forgetting my mother’s needs. I thought that if I had to continue living in this house a while longer (and I don’t really have to), I’d discover the key to life and make a film here, chronicling my triumph over NLD, then driving away to achieve great things. The last scene of the film would be my mother tearfully and proudly waving good-bye. She doesn’t cry much, so she would’ve needed to fake it. Since this is a documentary, that wouldn’t fly. Anyway, I’m not a baby, and the living together thing is getting old. Maybe she would’ve been joyfully cheering after I left. Who can say?
So I’ll be the one watching her go: not much of the film will be shot here, but I will shoot it elsewhere. The story will also include other NLD-ers with their own burdens to bear. My mother will continue to play a role, and the show will go on. The trickiest part of this change is trying to find the perfect love match between my NLD symptoms and the ideal job. I won’t find it if I’m not out looking for it, so I’m looking. If I can’t find that match right away, I’ll need to the get the good-enough second job that warms the right one’s place.
My mother’s decision to leave gives me great opportunity to carve out a new working life piecing my current job and my film project together with something new. Headquarters for THE ODD BIRD-NLD Documentary Project can move elsewhere, and since I’ve always dreamt of an eclectic life with a couple of careers running simultaneously, I’ll get my chance to live that out. I have real fears—the economy’s lousy, and people hiring might have funny notions about neurological disorders, but I’m getting great encouragement from other NLD-ers who are making big life changes, and I think that I might be able to make some too.
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Learning Disabilities & The Blogosphere
"774 - Neuron Connection - Pattern" by Patrick Hosely
I’ve been enjoying blogging for about six months now, despite reading about disillusioned bloggers packing up and leaving the blogosphere. With regular practice, I’m beginning to organize my ideas and write a little faster, and I consider this effort to be a good, cognitive work-out for my brain.
So in November, when Matt Ramsey, a University of Maryland graduate student and writing tutor contacted me about research he’s been doing on how people with learning disabilities blog. I was keenly interested in learning about his work. I agreed to answer questions his questions if he answered mine. Matt’s work is ongoing, but he graciously explained a little of what he’s doing. Here’s our recent Q & A:
TOB: Hi Matt, can you tell me about your work?
MR: Yes. I hope to produce materials to help learning-disabled individuals reckon how they can become employed or better employed. I’d also like to help those who are successful use their experiences to communicate to other LD people their methods for success.
MR: I do. A blog can be accessed 24 hours a day. LD students and professionals can reference a class blog or informational postings from anywhere there’s internet access. And with the latest technology, an LD blogger can manage, maintain and update his or her blog, from most anywhere.*
TOB: In your own blog, you explain that it has been difficult for you to find LD bloggers.
MR: Many people feel that it’s not advantageous for them to divulge the fact that they are cognitively disabled… as though there is a need for them to be gun-shy before outing themselves, due to the belief that they would be professionally and/or socially compromised if they were to come out of the LD closet.
TOB: Are you finding any similarities in terms of what LD people are blogging about?
MR: [There is] more than one person in the blogosphere who is attempting to have his or her situation/story documented. I don’t have these aspirations.
TOB: What learning disabilities do you have, and why do you blog?
MR: I have a short-term memory deficit that resulted from a massive stroke and spinal meningitis. I came away from a life-threatening experience with the desire to be creative through communication. I enrolled in my first creative writing class in high school after I sustained my final stroke in May, 1987. I underwent three brain surgery operations, and that September, resumed school. Despite doing horrifically at first in most of my classes, I excelled in creative writing.
Now that I’m nearing the end of graduate school, I’ve chosen to utilize poetry as a vehicle for self-expression and creative writing methods to teach non-poetic writing skills to students. I blog because I want to provide a community resource for learning-disabled persons.
TOB: What do you hope to do when you finish graduate school?
MR: I hope to continue tutoring at the university and in private practice and to open an art studio/eatery/creative arts forum.
TOB: Is there anything you would like to add?
MR: Nothing other than how great it has been to correspond with you.
TOB: Thanks, Matt. It’s been great corresponding with you too. Good luck on your research!
*[Here's an organization with a mission to make laptops accessible and affordable to kids world-wide]
Saying Goodbye to Harvey Pekar
"Harvey Pekar" by macabresque1
You and I have a lot to learn from the life of Harvey Pekar. He was an odd bird for sure and a very talented one.
Pekar died at his home in Cleveland Heights, Ohio (USA) in July at the age of 70. If you’ve not heard of him, he was a comic book writer, graphic novelist, jazz critic/collector and file clerk best know for the American Splendor comic book series in which he depicted his struggles with anxiety, depression and the ordinary moments of everyday life.
If you have read his work or seen the movie about him (also titled American Splendor), you may have noticed the NLD-ish/Aspergerian nature of his personality. He was a super-perseverator, an obsessive collector of jazz and blues records, a gruff, socially awkward college drop-out and a self-described “neurotic”.
Pekar didn’t fit the profile of a comic book writer. He didn’t write about fictional super-heroes or children with anthropomorphic dogs and precocious philosophies. Instead, he wrote about real encounters with real people. These included his wife, Joyce Brabner, and his co-workers at Cleveland’s VA Hospital where he worked as a poorly paid file clerk. He also couldn’t draw. Instead, various illustrators, including his friend R. Crumb, gave his beautifully written, ressentiment-laden words widely different visual expressions in each of his stories. This was a radical, new approach, but it worked.
Learning about how Harvey Pekar made his life work, although through the dramatization of a movie, inspired me to become a filmmaker and blogger on my own terms and despite having NLD. I respect him for delegating the art work he couldn’t do to others while he forged his way into a world that probably wouldn’t have invited him in, and he changed it. As I’m carving out a unique niche for myself in social media, sharpening my creative and analytical abilities and getting help on tasks that require good executive functioning skills, I’m remembering that this kind of thing has been done before by Harvey Pekar. Knowing this gives me encouragement. Hopefully, it will do the same for you.
Here he is in the 1980′s in one of his many guest spots on The David Letterman Show. It’s an infamous interaction between Pekar and Letterman. If you’re old enough, you may remember it. I’ve also included a scene from the film American Splendor starring Paul Giamatti as Pekar having a conversation with his on-the-spectrum buddy Toby Radloff (played by Judah Friedlander). In real-life, Toby, too has a fan-following and was regularly seen on MTV back in the 80′s.
The film is innovative, with a blend of actors and the real-life people they play included in the mix. You should rent it, read some of Pekar’s American Splendor series and take a look at his on-line comics. If the illustrations challenge your visual-spatial abilities, perhaps you could try reading them slowly, no one’s grading you here. You might like them.
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Funding proposals and….
"Skipper's Smokehouse" by LOLren
I got some good news a few days before Christmas. THE ODD BIRD has made it through the first stage of review for pre-production funding. I’m thrilled because in this economy competition for support from foundations and other sources is especially tight, and I’ve made it this far.
However, I can’t celebrate, because clearing one hurdle guarantees nothing. I’m going to have to work very hard to make sure my proposal is well-written and concise. Even if it is, that still doesn’t mean I’ll receive more good news: this funder may like someone else’s story idea a lot better than mine and support that project. You never know. That’s the nature of the documentary filmmaking world–you get multiple no’s and an occasional yes, no matter how much work you put into your fundraising efforts. Therefore, you need a thick skin. (Here’s where going through life with an undiagnosed learning disorder has done something good–it’s helped give me mine.) Still, with rejection comes disappointment, but at least I’ll know what to improve upon for the next proposal I write.
Please wish me luck. I have ten days to submit a further developed proposal, and I’m focusing on getting the work done. After that, I have a winter of library work, letter writing and phone calling planned. I’ll also keep on blogging, and whatever news I receive about this potential funding, you’ll read about here. Later…
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Quarterly Year Resolutions
"The Apponale Tower - Riva del Garda - inside the tower - clock from the inside" by Ell Brown
I’m not a person who enjoys writing about New Year’s resolutions, and I sometimes wonder if those who do write about them actually follow their own advice. (What’s the point of posing as an expert sitting on a high horse if you don’t know how to ride it?) However, I promised that I would no longer stop blogging when I had a proposal to write, so I had to do something here.
I actually started working on my resolutions in coaching this fall. My goal is to improve executive functioning and time management skills–a monumental task that I’m not enjoying very much. Having nonverbal learning disability means my brain is wired a little bit differently, and I need to put an enormous amount of concentration into improving these skills. If you’re someone who is a naturally gifted organizer, you may not understand this, but self-awareness for NLD-ers is not intuitive. Therefore, understanding where my organizational challenges lie and how to put systematic management into place isn’t easy.
But the work is necessary. In order to achieve these goals, here’s what I’m doing:
- Breaking Tasks Down Into Smaller Portions. This year, I’m making quarterly year resolutions, because I made so many broad and unspecific promises for 2010 that most were impossible to keep. By breaking my goals down to manageable proportions, I can re-evaluate my efforts throughout the year. So, instead of working on all executive functioning issues at once, I’m first tackling how to structure a daily schedule that will work for me. Since my NLD brain fuels itself on details, starting small is a good plan.
- Learning to Take Advice From Others Who Have Been There, Done That. Sometimes, I find it easier to take advice from people who’ve had some organizational challenges in their lives. It gives them street cred. Chaya Goodman has some great Motivation Tasks for Slackers.
- Learning to Take Advice From the Pro’s. My coach is highly organized, so are my executive producers. Throughout the year, I’ve been picking up advice from them about how to manage my work schedule. I’m unable to take it in all at once–sometimes I have to ask them to repeat themselves, but I’m beginning to improve how I organize things.
- Trying not to expect everything to change overnight. I have to make this my old way of thinking, otherwise I may give up on my efforts too soon.
Alright, so that’s my plan. It’s time to get off the resolution high-horse I’ve not yet learned to ride. I need to work on my film.
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Things I’m Not Supposed to be Able to Do
William H. Johnson: Art Class, 1939-1940, Smithsonian American Art Museum
I’m not supposed to be visually oriented, but I am. I love and appreciate filmmaking, animation, photography and color and find the inner workings of industrial machinery beautiful. I have a passion for modern architecture and the design of other useful things like automobiles, airplanes, shoes, furniture, fabric and everyday appliances. I’m told that I dress with style, and I work a retail job when this type of work is supposed to be next to impossible for an NLD-er to do.
After reading some of the literature on nonverbal learning disability, you might think that my interests are a kind of anomaly, since neurological deficiencies are supposed to make visual appreciation beyond my cognitive ability. However, not everyone with the disorder is affected by all of its symptoms: you miss some, get hit with others. So while I have trouble recognizing faces, reading maps and analog clocks, other visual skills are quite strong. Perhaps I should consider them to be small, compensatory gifts to help balance out the greater challenges of having NLD.
In developing my film, I’ve been speaking to and corresponding with many NLD-ers who do a lot things they’re not supposed to be able to do–people who collect art, knit and cook well, are gifted at video gaming and math and have excellent people skills. They all have diverse interests, and I’m really enjoying my interactions with them.
What’s interesting, though, is that some of these individuals don’t classify their skills as being worth very much. I understand their thinking: after years of criticism from others, many people with NLD have an in-grained tendency to hyper-focus on the things they can’t do well and never learn to appreciate or sharpen the skills they do possess.
I’m working on acknowledging and honing my own abilities now–it’s an ongoing process. I imagine that self-criticism will probably be something I’ll always have to work on minimizing, but I’m much more confident than I was a few years ago. I’m certain that all my efforts toward film development and blogging have something to do with the evolution of my self-image.
I’d love to know what you’re good at doing, because in the coming months, I’m going to compile a list of things that NLD-ers have told me they have aptitudes for and post it on THE ODD BIRD. If you’d like to contribute, please let me know. I’ll even respect your desire for anonymity if you’d like!
William H. Johnson is one of my favorite artists. You can learn more about his life and work. I’d love to see a biography and a narrative film about him.
