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Why Must There Be Two?

  • Posted on December 19, 2014 at 10:00 AM

I’m not sure if I’ve revealed the specifics yet, but I know I’ve reported my intention to start a nonprofit organization. In fact, I intend to start two from the very start. So, why, you might ask, must there be two?

The goal of both nonprofit organizations is to seriously improve the quality of life available to and experienced by people with neurological disabilities and/or differences, regardless of the severity of those disabilities and differences.

In order to do this, you have to proactively address two different spheres of influence: advocacy and service delivery.

On the one hand, you must work at the (inter)national level. You must raise understanding, awareness, and acceptance. You must advocate change. You must influence society. You must influence legislation. And you must cooperate with other disability organizations to accomplish all of this. This is the advocacy sphere.

On the other hand, you must work at the local level. You must provide opportunities for enrichment (building daily living skills, building social skills, building work skills, building household management skills, building business management skills, etc.) that meet the specific needs and goals of each individual. You must provide opportunities for employment (career planning, job hunting, business start-up, seed money, and job or business maintenance) that meet the specific needs and goals of each individual. You must also provide opportunities for empowerment (self-advocacy skills, issue advocacy skills, opportunities to advocate in the community, opportunities to advocate at home or with family, opportunities to advocate in the workplace, opportunities to advocate at the regional, national, or international levels) that meet the specific needs and goals of each individual. And you absolutely must have a way to navigate the various programs, services, and opportunities that are available in the local community so that the needs of each individual can be met and their goals can be achieved in a cost effective manner so the maximum number of people can be served with the resources available while still meeting quality standards. This is the service delivery sphere.

If you put these two spheres of activity together under the same organization, you’ll get an ineffective, inefficient organization. If, on the other hand, you have both spheres linked but separate, you can produce a powerful, driven set of organizations that meet the complex needs of people with neurological disabilities/differences in both areas that matter most. The (inter)national organization will actively advocate at the topmost levels of society; the local organization(s) will actively deliver the individualized services that are most desperately needed by people with neurological disabilities/differences. There will, of course, be overlap by design: the national organization will “seed” the local organizations, develop appropriate policies, and distribute the capital necessary to “plant” the organizations, while also holding functional local organizations to the conduct standards set in the organization’s charter; the local organizations will “feed” issues and problems to the national organization, which the national organization is responsible for addressing as the advocacy organization, and they will also develop the skills and provide the opportunities for volunteers/employees to move from the local to the national level.

I’ve been around enough to know that the way things are done for people in need—in the U.S. at least—has a tendency to function in such a way that creates dependence without really solving problems. A set of services are provided and people who need help can choose among the options that are available. If enough people have unmet needs after those selections are made, then a new service is created to meet those needs. But people aren’t individuals. Decisions are driven by statistics, metrics, and policy goals. The idea isn’t to help people; the idea is to help demographics. The result is that people aren’t really helped in a way that satisfies their needs, facilitates their goals, or solves their problems. This occurs, in part, because these decisions are made far away from the people who are actually in need, by policy makers operating at the national and state levels.

My goal is therefore two-fold. Create a system and processes that work by actually working with individuals with neurological disabilities and differences. The system and processes will be flexible enough to be individualized, but also knowledgeable enough to leverage available resources to provide as help as much as possible, yet independent enough to fill in the gaps as needed. This will transform the quality of life for the people I understand best and am most passionate about; yet, it will also create a model that can be used by other organizations (the national organization would facilitate this) in order to truly meet the needs of populations that my program is not designed to address.

Usually this kind of holistic solution-oriented service delivery is restricted to select localities. A few local areas work together to solve problems. These solutions become case studies that are offered to other communities. The process is replicated, though the same results are not always achieved because the solution-oriented spirit of the process is gutted from the service delivery design. My hope is that by combining the local impact with the national reach, I can change this. So, there has to be two organizations, inextricably linked, but independently functioning. There must be two.

No Title

  • Posted on January 31, 2014 at 10:00 AM

As I start my second semester of public administration studies, I embark on a study of administrative ethics. Ethics has always been of great interest to me, because I feel it is very important, even essential, to do what is right as much as possible. If I am to increase the opportunities for me to do what is right, then I have to better understand what the right thing to do is. Ethics helps in that goal by helping me construct a framework to use when making decisions.

In my recent reading, I learned something new, something rather unexpected, and I’d like to share it with you. The text I’m reading now is The Responsible Administrator by Terry L. Cooper. According to Cooper, responsibility is a relatively new term coined after the American and French revolutions in response to the need of a new way to define “a common set of values among people of divergent cultures and traditions.”

Apparently, the change of political and governing structures did so much damage to our ideas of roles, structures, and obligations that we had to create a new framework for understanding and expressing our expectations for ethical behavior. Responsibility asserts obligations on individuals in order to describe and attribute obligations for achieving what is right.

In this sense, the idea of responsibility is evolving and adaptable as we learn more and more about what the consequences of behaviors and values can be, thereby bringing us—as a society and as individuals—closer to what is right.

Cooper asks, “What does it mean to be a responsible parent in the first decade of the twenty-first century? Or a responsible spouse, responsible citizen, responsible politician, or responsible public administrator?”

As a partial answer to this question, Cooper proposes, “Responsible administrators must be ethically sophisticated enough to reason with others about the ways in which their conduct serves the public interest and have sufficient clarity about their own professional ethical commitments to maintain integrity and a sense of self-esteem.”

Remembering that I am studying public administration with the intention of learning what I need to know to found my own nonprofit organization, which will serve people with neurological differences, I cannot help but apply these questions and this answer to my own areas of interest.

What does it mean to be a responsible parent of a child with autism? What does it mean to be a responsible citizen in a society with people with neurological differences? What does it mean to be a responsible founder of an organization intending to serve the needs and interests of people with neurological differences?

It is not enough to simply do what you believe is right. You need to be able to explain, articulate, and justify why it is right, because then you can apply the ethical standard more generally. For example, a responsible parent of a child with autism will not pursue treatments that endanger the life of their child, because the life of their child is more important than the outcome of the treatment. Projecting this value further, a responsible parent of a child with autism will not kill their child because the child’s autism is incurable, because the life of their child is more important than whether or not the child is autistic. By understanding and articulating our reasons and our justifications, we clarify our ethical standards and reveal lapses in ethical judgment.

Voices: Susan Senator

  • Posted on December 4, 2013 at 10:00 AM

Though her son, Nat, is older than any of mine, I can’t help but find something of a kindred spirit in the voice of Susan Senator. I’ve agreed with her and disagreed with her in times past, but I’m not going to dwell on the totality of the autism dialogues. Instead, I’m going to focus on two of the sentiments she shared in this piece.

First, there’s this passage, which highlights a problem we both see:

And nothing really changed for him until he was nearly 6, in a school that practiced a strict behavioral approach. Behaviorism was the only thing that could puncture that apparent indifference of his. I didn’t like this approach for that reason. It seemed almost mean-spirited, to force him to pay attention all the time to others’ trains of thought, to reward him like a puppy, with treats, to make him work every waking moment to correct himself. To learn that everything he did was wrong.

Even though my children are so much younger than her on (my oldest is not yet 15) this is still the dominant, prevailing attitude and approach to autism treatment.

Then, there’s the alternative she highlights, which I propose as a widely applicable solution:

Somewhere along the line I let it go. But when he reached his late teens, there was a stunning burst of growth. The sun’s rays shot out from behind those clouds and suddenly he wanted to be with people. No, he did not de-auticize. He just wanted friends.

It was plain old being ready. Time. And the nurturing acceptance of Special Olympics coaches. The message that you are perfect just as you are, now let’s play ball.

Children grow up, whether they are autistic or not. Acceptance nurtures that growth, whether the one who is accepted is autistic or not. Think back to your own childhood. Who made the most positive differences in your life? Did they treat you like a problem that needed to be fixed? Or did they treat you like a person who was worth helping? Does your child deserve any less?

Science and Ethics

  • Posted on October 18, 2013 at 10:00 AM

This post is a continuation or expansion of last Friday’s post, A Scientific Link. Just because we can, doesn’t mean we should.

If you’re a consumer of science fiction, then you’re familiar with the way writers ask “what if” questions in order to explore possible consequences of scientific endeavors. To get a big dose of this, you can watch Fringe.

Basically, science is amoral—not immoral, meaning in violation of moral principles or wrong, but amoral, meaning without morality or not concerned with right or wrong. Legally, we try to assert morality into scientific endeavors by limiting what scientists are allowed to do. Individual scientists may bring their own morality to bear on their work. However, science as a discipline is amoral. It’s about curiosity and testing theories, not about whether or not something should occur.

Therefore, we can look to science to answer “how” questions, like “how does this work” or “how do we do this;” but, we cannot look to science for the answer for “what” questions, like “what should we do” and “what shouldn’t we do.”

When it comes to autism and science, we’ve reached the point where we need to focus less on “How does this work?” and “How do we do this?” Instead, I propose that the primary question we should ask is, “What should society/scientists be allowed to do to peoples’ brains?”

In scientific terms, the brain is the storehouse of memory, thought process, and other components that make up personhood, like personality and emotions. We know that people with brain injuries, stroke, and Alzheimer’s, for example, can undergo significant changes in how they express who they are, because these conditions impact their brain.

Yet, when it comes to autism and other neurological disorders, there are many people in our society who claim the right to seek a cure due to the disruptiveness of the behaviors people (i.e. children) with autism exhibit. They seem to ignore the implications of messing with a child’s brain. By curing someone of autism, for example, you will need to fundamentally change how their brain works, which involves fundamentally changing their brain, which involves fundamentally changing who they are—or, at the very least, how they are able to express who they are.

On the surface, when you’re talking about people profoundly limited by their autism, this may seem like a good thing. I know how it feels to want your child to talk. I know how it feels to want your child to be able to be “more himself,” by taking away the frustrations that make him act out. So, yeah, I get it.

At the same time, I don’t. Because the kind of cure that could impact autism isn’t going to function at the surface of things, it’s going to have a dramatic impact on a person’s brain—if it works at all. In other words, it’s not going to make a child “more himself;” it’s going to change who that child is. It’s going to change the way he (or she) processes information. It’s going to change the way he (or she) experiences the world. It’s going to change the way he (or she) thinks, and probably what he (or she) thinks about and remembers, what those thoughts and memories mean to him (or her), and who knows what else.

Basically, one of the working theories is that autism occurs because of a combination of overabundant and underabundant neural pathways. If you start to mess with those pathways, then you are going to change who the person is, just like a stroke will change who someone is or at least how he or she is able to express who his or her own personhood.

I’ve read enough about tiger moms and other dysfunctional families to know there are parents out there who would love to be able to forcibly re-write their child’s brain to make their child who they want their child to be. I don’t see the potential “cure” for autism as being any different. The question then is: Should parents (or doctors or guardians or anyone) have that right? Does society have the right to rewire someone’s brain to make them more socially acceptable?

Night and Day

  • Posted on September 30, 2013 at 10:00 AM

Sleep is a peculiar thing. You’d think it would come naturally. I’m sure, for some people, it does. But not for me and not for many of the people I know.

A circadian rhythm refers to a natural, biological process attuned to the 24-hour day/night cycle of the earth. In theory, human beings sleep according to a circadian rhythm that attunes them to the day/night cycle. We sleep best at night and are most alert during the day. The night shift, of course, changed that for some. Others, myself included, faced life challenges that disrupted their circadian rhythms.

Though the boys have gotten much better at sleeping at night, not to mention sleeping long enough to get a good rest, I have found restoring my circadian rhythms much more difficult. My body tends to slide through the week.

For example, last week I was so far behind on my work and coursework, I shorted myself on sleep and tried to be awake during the nights so I could have a longer period of uninterrupted work. I was firmly entrenched in this cycle by the end of Wednesday, which had repercussions I’ll discuss in my next post. I spent the week working at odd hours, sleeping at odd hours, and my sleep was definitely not cyclic in nature.

This week I’ve committed myself to a day schedule. I spent my day of rest (Sunday), resting up from my wee-hour work day on Saturday, eschewing caffeine, and going to bed early (for me) on Sunday night. I woke refreshed this morning and ready for a full day—at least, I hope so! Yet, despite the best of intentions, I suspect I’ll slide back into an irregular schedule by the end of the week.

What’s decidedly worse is that I tend to rely on external chemicals in order to get to sleep regardless of when I do it. I take between 6 – 10 mg. of melatonin and a full-strength OTC sleeping pill (the equivalent of two Tylenol PM pills, without the acetaminophen). And that’s when I’m already quite tired and feeling “ready to sleep.” When that is insufficient, I usually add a third melatonin to push me over the edge of consciousness into sleep. Most of the time, it works. But sometimes it doesn’t. Usually, I’m up and alert after 5 – 7 hours of sleep. Only when I am unwell can I get the 8 or 9 hours people tend to claim we need.

Mark, on the other hand, will take a full-strength OTC sleeping pill on the nights he can’t sleep and sleep for 12 hours straight—and he’ll sleep hard! I find myself facilitating from envy to resentment, wondering how he can manage to stay asleep so long. Seeing that neither envy nor resentment are good qualities/emotions, I try to put off such feelings and instead embrace with gratitude his willingness to cope with my sleeping peculiarities, so that (most of the time) I can sleep when I need to regardless of the time of day.

Visualizing

  • Posted on September 27, 2013 at 10:00 AM

My children are visual people. Willy loves drawing—it’s his favorite class. Alex loves coloring, it’s his second most preferred activity (right after the Kindle). Ben loves drawing, too, especially re-creating images he saw on the Kindle.

I visualize in words. This isn’t the same kind of “visualization” other people mean. But my mind creates pictures with words.

I am currently working with a graphic artist to create tailor-made images for my website. She is also the mother of a child with special needs. It’s been an interesting experience. We’re trying to translate my visualized-as-words thinking into actual images other people can see. There’s some trial-and-error involved, both between our communications and with her trying to do something she’s never done before.

Pretty soon I’ll have the first image created from this process and I look forward to sharing it with you.

In the meantime, I was wondering how many people reading this blog are visual-thinkers and how many are word-thinkers. Or do you think primarily in another way? Share your thoughts!

Mosaic: Outside the Box

  • Posted on August 12, 2013 at 10:00 AM

As an alumna of National-Louis University and a newly graduated Master of Written Communications, my essay Outside the Box will be appearing in this year’s addition of Mosaic, the National-Louis literary journal.

After spending most of my life trying to squish my spherical brain in a cramped, socially acceptable box, now society seems to have come to respect, even seek out, out-of-the-box thinking.

Today I’m going back down to Chicago with my husband to celebrate the publication and release of this year’s Mosaic. I’ll get to see some old classmates and instructors—old as of three or so months ago—and meet some new people interested in the literary arts. I’ll come back with some information about how you might be able to get your very own copy of Mosaic.

Let me give you hint: I can’t fit my tree into society’s box.

Changing the World

  • Posted on July 10, 2013 at 10:00 AM

Now that I have convinced myself that there’s a way for me to start up the nonprofit organization of my dreams without winning the lotto or writing a surprise bestseller, I’ve started talking about the organization I want to found. I’ve been having conversations with random people all over the world, often ones who do not have an established, vested interest in autism.

They take me seriously.

This surprises me.

As I child, I can remember telling people I wanted to be an author and that I wanted to make a living writing books. People tended to steer me in other directions. I’d need a day job, they’d say, like being a secretary. I’d need a real career, they’d say, and if I wanted to write for a living I should think about becoming a journalist. Nobody ever really took me all that seriously when I said I wanted to be an author.

Don’t get me wrong. My parents fed my voracious appetite for books. They let me expend endless amounts of paper writing. They even let me use up their envelopes and stamps sending out my manuscripts, starting at the tender age of twelve. They didn’t keep me from trying. They just wanted me to be realistic. After all, I was a dreamy sort of child and realism was a foreign concept for me.

I look back to where I was and see where I am and look ahead to where I want to go. I see why people take me seriously. But I also know that the dream that’s chosen me is a big one. In many ways, it’s not realistic. But then again, it wasn’t realistic to go to graduate school while raising three children with special needs. Not only did I finish my degree, I got straight As, top marks, a 4.0.

To heck with realism. I know how to dream and I know how to work hard to realize my dreams.

Then, I take a closer look at where I am and what I’m doing: I say I want to change the world. I realize that all those random conversations do exactly that. They change the world. It’s only a little bit, sure, but every time I open someone’s mind to the idea of helping people with neurological differences take part wholly in society, regardless of the severity of their special needs, I start a chain reaction.

The more people I convince of that the closer I come to making my dream the new reality.

So, they take me seriously. Good, because I am serious. I will change the world. And that’s pretty cool!

Sharpening the Dream

  • Posted on July 3, 2013 at 10:00 AM

Once upon a time, I was an undergraduate student with a dream: I wanted to learn how to run a business well enough that I could make a living writing for other businesses, while also writing the things I wanted to write.

Over the course of pursuing this dream, I learned a lot more about autism and advocacy than I expected. I also learned that, while my undergraduate degree made me a better-informed businessperson and honed my strategic and planning capabilities, this degree would do absolutely nothing to improve me as a writer.

Before I’d finished my undergraduate degree, I knew I would get a graduate degree and I knew exactly what I wanted this degree to cover. I researched the programs available to me and finally made my decision by taking an intuitive leap. I don’t regret my choice, because my recently-completed Master of Science in Written Communications made me a better writer in all of the areas I wanted to improve my writing, both in corporate and journalistic writing and in literary and prose writing and even in poetry.

I thought I was finished. I thought this time I would get a job and get to work and all would go smoothly from here. After all, I was working on multiple books and I had a steady (though not ample) supply of clients. All I needed was a rewarding part-time job to provide some steady, reliable income and I’d be on my way.

* * *

In the book I’m trying very hard to write and trying very hard to pin down to a schedule, there’s a section that is modeled after Martin Luther King Jr.’s “I have a dream…”

I do have a dream. I have a dream that people with neurological differences will be accepted and accommodated. I have a dream that the goal of education and supports for people with neurological differences, even severe neurological differences like Alex, will be designed with the mindset that these people are valuable and have contributions to make, and that they really can contribute to society.

I have a dream that involves me creating a nonprofit organization with the intention of fulfilling this dream. In this dream, I’m able to do that because 1) I write a surprise bestseller or 2) I win the lotto.

Recently, something inside me shifted. I realized that people with passion do start nonprofits, not because they win the lotto or become independently wealthy, but because they share their passion and work for their dream. Many of them even know what they’re doing and do it well.

When I started searching for this part-time job that was going to round out my different activities, I gravitated to nonprofits from the very beginning. Then, I admitted to myself that I didn’t like corporate writing for corporations, and focused my search exclusively on nonprofits.

With that decision, I gave myself permission to admit that what I really want to do is to make the world a better place. There, I’ve said it: I want to change the world. And, more importantly, I believe I can change the world. I can make this world a better place by working my dream.

I’d done a little research and toyed with the idea. I was interacting with one of my blogging friends and she asked some questions. I tried to answer them, but had to stop and delete my comment. Then, on a second glance, I knew they were rhetorical. Well, maybe it’s not so much that they were rhetorical, but that it was not expected for me to have an answer. And I didn’t have an answer. But…

If I want to make the world a better place by working my dream, then I needed to be able to answer questions like the ones she was asking.

Me being the person that I am, I knew what I had to do. Right then and there, I started looking for degree programs that would teach me how to answer those questions. The program wouldn’t teach me the answer, because these are questions where, currently, the answers do not exist.

I hesitated. I’m still hesitating. I don’t really want to go back to school. But I want to be able to answer the questions. I want to be able to start that nonprofit whether I win the lottery or not. I want the nonprofit I start to solve problems that affect the lives of real people. So, I need to know how to do it right. And I don’t. Not yet.

But, despite all this hesitation, I have a feeling I will learn. My dream has become sharp like a razor. It is cutting loose the confusion, the doubt, the hesitation. And when all that garbage is gone, I suspect I can fly.

The Employment Conundrum

  • Posted on June 12, 2013 at 10:00 AM

If you’re paying attention to the world of employment, then you might think the tide against homogenous thinking is turning. Maybe it is.

“The multinationals [SAP & Freddie Mac] both say they hope to harness the unique talents of autistic people as well as giving people previously marginalized in the workforce a chance to flourish in a job.” -- Fox News

For those of us who have people with autism in our lives, this may be seen as an opportunity. If you’re an adult with autism, there are people out there who value your unique qualities as employable assets. If you’re the parent of a child with autism, your child might have an employable future. This should be seen as good news, right?

I’ve read a variety of articles that communicate a changing trend. I’ve seen universities, employers, and other organizations all expressing their perception of the value of people with autism. As a neurodiversity advocate, this seems very much like what I’ve been working for, hoping for, fighting for. But then I remember that what I really want is a chance for my children, and everyone like them, to be valued for who they are.

You see, there’s a problem with all of this. I feel it like a shadow creeping up behind me. I feel it like slimy fingers along my spine. I feel it like the brush of coarse fabric against my skin.

Is valuing someone because they are autistic any better than NOT valuing someone because they’re autistic? Either way, it’s judging someone’s value based on a preconceived notion of who that person is and what they can or should be able to do. In other words, it’s prejudice.

I get the same creepy crawly feeling when I hear affirmative action expressed as a good thing. I’m sorry, but how is judging someone favorably for their race any less an act of racial prejudice, especially when it means judging someone else unfavorably for their race?

On the one hand, if we do nothing, then people with autism will still be marginalized. On the other hand, if we convince people in power that people with autism have a peculiar set of traits that can add value to their workforce, then…people with autism will still be marginalized, but at least some of them will be employed.

Practically speaking, I recognize that there is a real-world trade-off going on here. I recognize that, as abhorrent as the practice may seem to me, affirmative action serves a purpose. I recognize that marginalized but employed is better than marginalized and unemployed.

But, aside from these practical realities, the truth is this doesn’t change anything. The real problem isn’t simply that people with autism are unemployed or that people who are not white are less favorably employed than people who are white. These very real, life-altering hardships are symptoms, both of them, of a much bigger cultural disease.

Prejudice is alive and well in our cultures. Prejudice has a deep, lasting, traumatic, and obviously negative impact on the lives of real people. The cure to this cultural disease, the cure to prejudice, is not to tweak prejudice to be more favorable. The cure to this cultural disease is for everyone within the culture to open their eyes and see a fellow human being—not a white male or a black female or a black male autistic or whatever other boxes you might put a person in.

I don’t care what your skin color is, what your diagnosis is, or whether you have a diagnosis. You have value. You have something you can contribute to society. You have a reasonable expectation to earn a living contributing in some fashion to society. When applying for a job, you should be judged solely on whether or not you can do the job that needs to be done.

Granted, in certain cases, designing jobs that meet organizational needs and yet accommodate for existing weaknesses is a very good thing. I’m all for it. Until you stick a label on it. As soon as you designate that job to a certain label, you dehumanize the people who can do the job with the accommodations in place. The fact is there are people who are similar to people with autism who do not qualify for or do not have access to an autism diagnosis. Some of them have other diagnoses. Some of them have none. Can they do the job? Can they benefit from the accommodations? Does a label really matter? The fact is that the label only matters in a world where prejudice reigns.