Friday, March 21, 2008

Autism, Amish, and Outbreaks

Apparently, contrary to urban legends, the unvaccinated Amish do get seizure disorders and autism:

http://www.medpagetoday.com/Neurology/Autism/tb/2954

Of course, why trust the New England Journal of Medicine when there are so many "experts" pushing their theories on the Web? I am now accustomed to the anti-vaccination crowd claiming that any research that points to a genetic cause, with minimal environmental triggers, is research bought and paid for by "Big Pharma" or some other conspiracy is at work.

It is ironic that the stories of autism-free Amish appear on thousands of Web sites, while serious research is largely ignored. People want easy answers.

Triggers are not causes. Are there triggers for underlying conditions? Probably. But I wonder if we are asking for trouble as more and more parents avoid vaccines? Hence, recent stories in the New York Times about measles outbreaks. According to the Times, several outbreaks of nearly-eradicated diseases have recently occurred. "[A] 2006 mumps outbreak in Iowa that infected 219 people...."

http://www.nytimes.com/2008/03/21/us/21vaccine.html?hp

Will the fear of autism lead to something much worse? That is no small question when states consider mandatory vaccinations — which will always carry risks. I am glad I do not have to perform the risk analysis for parents and overall society.

Tuesday, March 18, 2008

Speaking and Walking

It has been a tough couple of weeks. I skipped a class last week because I could not speak well and was having a great deal of difficulty walking. My mind and body are not in agreement lately. With all that has been happening at the university, it was reasonable not to attend class with flapping arms and strange verbal outbursts.

I wish I understood myself and could control my arms, my legs, and my mouth!

This weekend I slipped down our basement stairs, fell into the walls more than once, and whacked my face against a bookcase in our bedroom. My internal sense of balance is definitely offline; whatever internal gyroscope most humans have is malfunctioning.

The verbalizations, usually grunts and shrieks from pain, are annoying. It is worse than an elderly man trying to stand up from a beanbag. I yelp in agony, randomly, without realizing it. Quite annoying. You would think I could bite my lip or something. It scares the cats.

The pain seems to result in something like the chills. I have been shivering in a perfectly warm house. I shake, sometimes violently. It makes it hard to type or even to hold a book to read. I will type a word or a sentence, shake and flap, and then type again. It is all very weird, I am sure.

Susan has been reading up on seizures and my mis-configured neural network. She thinks I have been having seizures because I am losing entire days from my memory. Apparently I went for a walk, or at least tried to, in the snow, wearing my pajamas, talking about walking to my favorite donut shop back in California.

Now, don’t get me wrong — it is a great donut shop. (Doughnut, to some.) I really miss the (oily) apple fritters and raised donut “cinnamon rolls” (Susan reminds me that a real cinnamon roll is not deep fried). Despite how wonderful the donuts are, it is unlikely I could walk to the shop from Minnesota. At least I would arrive thin enough to justify donuts, if I survived the trek!

I am fairly certain that Susan is right. Stress is triggering seizures and aggravating my other characteristics. I am in terrible shape, mentally and physically. My body needs a break, which it will not receive until summer, at the earliest.

People did not understand when I tried to tell them any more stress would have terrible consequences for me. I pleaded to avoid physical, face-to-face, meetings. People do not understand the physical pain caused by all the commotion this semester. I am in true, serious, physical distress.

It is probably not right of me, but I wish some of the people around me could experience what my mind and body are like. I wish they could understand, just for a day, what it is like to have a body beyond your control.

More than wishing others could experience my life... I would love to be able to speak and walk normally. To be normal, without the stuttering, stammering, and yelping. To be normal, without the stumbling, wobbling, and falling. Speaking and walking would be a pleasant return to normalcy.

Wednesday, March 12, 2008

Low Incidence

I have been informed that the university considers autism spectrum disorders a “low incidence” concern. Therefore, the university sees no reason to increase support resources for these students or to expand faculty and staff training. In other words, after a cost-benefit analysis it has been decided that there’s not enough benefit to be gained.

I suppose until someone pushes a demonstrable ADA claim or a bias case, the university can continue to ignore ASD’s unique complexities. Why bother investing in students who might have special skills?

Why would we want students with unusual abilities if they include complex needs? Much easier to ignore the unusual….

This month’s Wired magazine (March, 2008) includes mention of the special skills possessed by some autistics. Not merely the savants, but “regular” autistic individuals posses unique spatial and mathematical skills. The methods ASD students use to analyze problems sometimes provide new insights. Different brains produce different solutions.

But, ASD individuals are just difficult, apparently. Special services and dedicated support personnel are beyond the reach of the University of Minnesota: one of the most expensive state universities in the United States. Amazing. How can this institution, with its outrageous tuition, claim it lacks resources for disabled students?

Clearly, the university does not want students with unique gifts. What a shame that we are “low incidence” and therefore not an essential part of the student population. Sure, they will claim otherwise, but not providing adequate services send a clear message. I know the people in Disability Services share my disappointment.

Tuesday, March 11, 2008

Big Univ., Little Support

In several earlier posts I have noted systemic failures at the University of Minnesota. In August, 2006, my misadventures began. By the end of September, my position in the Writing Center ended in disaster and a complaint to the university relating to the experience. The university has been less and less welcoming with each new semester.

The university is nothing like my experiences at Fresno State or my initial studies at USC. My classroom studies in English and journalism at USC were relatively uneventful. (Problems at USC were limited to one person in the School of Education, after I completed my undergraduate studies.) Fresno State went relatively well, too, with a 4.0 GPA and my only issues involving paperwork nonsense that occurs everywhere.

I was never “disabled” at USC. I was only listed as disabled at Fresno State after having issues walking across the campus in a timely fashion. I am slow, especially when my back and legs hurt. Still, this was a minor issue and the university made sure my teaching locations were convenient. People were quite helpful.

The Univ. of Minnesota has reminded me that there are people unwilling to understand difference. Until coming here, I had assumed things would be even better than in the past. After all, I had clearly demonstrated my mental abilities.

Unfortunately, once I realized I needed additional advocacy here, I learned another reality about the university: though one of the most expensive state universities in the nation, it’s funding priorities make absolutely no sense.

The failures of the Univ. of Minnesota are the result of funding and resource choices made well beyond the control of the Disability Services office. The staff of DS is too small to deal with the needs of a campus with more than 50,000 students. The DS office should have no more than 50 cases per specialist, but it seems some disability specialists are expected to assist more than 140 students. This low staffing ratio prevents DS from experimenting with more innovative programs. Staff struggling to maintain workloads have no time to innovate, much less the time to adequately serve students.

With a larger staff and more resources, Disability Services could implement some great changes. Some of these changes might include a customized service database, which could automatically e-mail students with appropriate reminders. Students could request “accommodations letters” automatically, via a secure online site.

Everything from the minimal transit offered to the disabled to classroom tours could be improved with more funding for personnel and resources. The campus is not “mobility friendly” any time of year, but it is particularly bad in the winter. Touring classrooms, essential for some disabled students, is further complicated because rooms are sometimes (rightfully) locked. I walked across campus, in pain, only to reach a locked multimedia classroom.

I wish there were a way to explain to administrators that we need more services. We are receiving more disabled students than ever, including veterans with unique needs, an expanding population of autistic students, and record numbers with mental health needs.

Someone mentioned to me that some students require more assistance by nature of the disabilities. I cannot imagine using a wheelchair on this campus, having found a cane and crutches difficult. Blind students require tours to learn where rooms are, as well as to plot the safest routes in this urban setting. Veterans with serious injuries are also adapting to life out of service.

Now, add to the “expected” disabilities autism. It is nothing like the physical disabilities professors cannot ignore. Abusing someone with a clear physical disability would never be tolerated. Very little “educating” is necessary; professors know they need to be respectful.

Anyone with an “invisible” disability is easy to ignore, and mistreatment is too often tolerated. Disability Services lacks the mandate to require that professors attend training sessions. DS has too little support to be proactive, even for a population that must be served before problems occur with professors.

Things here need to change. For a university supposedly dedicated to improving its standing, it certainly is failing a large segment of students with special gifts, as well as special needs. What an absolute travesty.

Note: I outlined this post early in the morning, using the “quicktype” feature of an iPod Touch. As I shake sometimes, I wasn’t sure how the device would work, but it did surprisingly well.

Thursday, March 6, 2008

Sick of this Hell

As anyone reading this blog knows, I hate — despise completely — Minneapolis.

I am in constant pain this winter. My left shoulder feels like it is being ripped from its socket. My entire back hurts, especially my lower back. My hips, knees, and ankles constantly pop. My hands tingle, like ants are crawling over them… plus they sting constantly.

Then there are the two, three or four times a day that my nose bleeds. I use Vaseline, ointments, and we boil water on the stove. Still, my nose bleeds, usually followed by a severe headache.

I am taking Ultram twice a day once again. I take painkillers at night, whatever we have in the drawer. I think it is a Tylenol PM of some sort. I have no idea how well these things mix. I should probably research what is and is not safe with Ultram and Neurontin.

Then, you have the dirt and grime of snow turning to slush. It is disgustingly dirty here. I get dirt on my clothes constantly. My shoes get wet and they get stained from the salt / chemicals on the sidewalks. I walk cautiously, always afraid of falling (again) and breaking bones (again) or twisting an ankle (again).

I want to leave the muck, the pain, and the general sense of claustrophobia I have in Minneapolis.

Twenty-eight months to go — at worst. Actually, few things could be worse.

Saturday, March 1, 2008

Injuries, Real and Unimagined

Thanks to a complete breakdown in the University's system and a professor I will never forgive, I endured a trip to the Office for Student Conduct and Academic Integrity. It was a stupid situation and far too much for my system.

Before the meeting I was already in sorry shape. This is a meeting that should never have been held if anyone at the university cared about my health. I knew it would be damaging.

Susan ended up meeting with the office representative, leaving me alone in a room. Alone, while other people talked about me. Alone, with too much on my mind. Alone… desperately wanting to go home.

By the time Susan returned to the room, my knuckles on both hands were bleeding. I had scraped the skin by pounding rhythmically on the floor. I'm not exactly sure how I ended up sitting on the floor, under a table, exhausted. My back was bruised, badly, from rocking against a brick wall with external power conduits.

This absolutely stupid meeting left me bloody, bruised, and sore. All of which was predictable, if anyone had bothered to listen to our warnings that this was a terrible process.

I still ache. I had Band-Aids on my fingers for three days. My back still has a horizontal red line.

This entire episode will be a long, detailed part of my memoir. My wife is going to help with the notes and I plan to include every detail I can so other individuals don't end up in similar situations. Unfortunately, no matter what precautions you try to take there will breakdowns in communication compounded by absurd, ignorant, (many other adjectives) individuals who don't want to be tolerant or act intelligently.

When the time is right, I’m going to make sure the relevant letters, e-mails, and other documents I have received end up within my writings. That should be educational. Unfortunately, I don’t think you can shame or embarrass some people.

I am beyond the point of caring if this hurts my future academic career… a truly professional organization would not have tolerated the behaviors I have endured while at this university. There would have been apologies and a real fear of legal consequences.

Tenured professors are too isolated and too sure of their actions. The system needs to change.