Soon, Ben will be transitioning from the intensive to the post-intensive stage of Wisconsin’s autism waiver, which means more flexibility but fewer hours of therapy.  Willy is going to middle school, which is a point of anxiety and excitement.  Alex is still struggling with bouts of aggression, but has been much happier this summer.  There’s been considerable excitement, loudness, and activity all around.

Recently, my brother, my uncle, and their friend—along with a lot of local helpers—implemented a landscaping plan to address the leak in the basement.  Unfortunately, the only rain we’ve had since then was a big gusher—four and a half inches of rain in an hour and a half, but it rained for much longer than that—and it did not give us a clear idea of whether or not our efforts were successful.  The cleanup work is still not done, but I’m doing a little at a time.  The important thing is the system is in place and should work during a normal rainfall.  But, there is still a lot of rock and dirt to move.

Despite all the activity and all the good things that are going on, I have been struggling with depression.  Perhaps it would be more accurate to say “because of all the activity and all the good things that are going on, I’m struggling with depression.”  Each day there is more to do than I can possibly get done and I’ve tried for too long to do it all anyway.  Working on the landscape project was unavoidable—it’s my house and there wasn’t as much labor as we needed—but after that I let myself crash.  But I predicted that, so it’s all good.

I guess the point is that I’m back, but I’m still tired and still trying to get back to a manageable schedule.  But my to-do list is still over-full.  Hopefully I don’t work myself to a crash again this year, but that’s the risk of being me.

I have one more week to complete my business plan (as well as the work from my other class), and then I'll be back online.  I'll also be finished with my bachelor's degree!  Well, everything but the ceremony.

I anticipate getting a real post up on Wednesday, April 21.  See you then!

 “I love you,” I said, sincerely but also distractedly.

“Yeah, but sometimes I wonder why,” my husband responded.

I stopped in my tracks.  Distractions…gone.  Words…gone.  Thoughts…gone.  Seconds passed and the only thing in my conscious mind was a fleeting thought to count in anticipation of a response, something I do with my boys when there is an apparent delay in processing.  But this time the delay was my own.

A response surfaced, along with a tragic sense of…something.  The response was completely inadequate yet completely true: “If you don’t know, I can’t explain.”

In twelve days Mark and I will celebrate our twelfth wedding anniversary.  We’ve had our ups and downs, our yelling matches, our rough patches, and our breaking points.  We’ve survived them all.  Yet, depression and the words of others eat away at us.

These moments come and I’m never prepared for them.  I can no more put into words why I love Mark than I can put into words why I love my children or anyone else.  Love doesn’t have a why.  Love goes deeper than all the whys we’ve ever put into words.  I can tell you why I like Mark, and even why I sometimes don’t like Mark.  I cannot tell you why I love him.  I just do.  I always will.

The tragic sense of…something lingers.  Again, there are no words for this.  Loss, sorrow, and regret…these words are part of it, but they’re as inadequate as my response.  I mourn for that part of him that is lost in the depression, where the light my love shines cannot reach.  I regret the busyness that keeps me moving and going and trying, working towards a dream that seems both too big to accomplish and too necessary to fail to accomplish.

Somehow I have to express to him (and others who find room for doubt) the why for something that has no why.  Perhaps this will be enough:

This morning, as Alex was just getting his morning started he slipped a DVD too far down his finger and it got stuck and started to swell.  I tried to get it off, but it would not budge.  I buttered it, but it would not budge.  I tried to break the DVD, but it would not break.  Mark was sleeping, so I lead Alex—who was fussing about the pain in his finger and wasn’t I going to fix it, now please!—upstairs and woke Mark up with a hasty plea and he removed the DVD without hurting either Alex or the DVD.

It seems little all by itself.  But there are many strings of little things over these last twelve years.  All together they prove to me, if only to me, that we complement each other.  We fit.  We are two “wholes” that make a better “whole” (versus two “halves” that make a “whole,” which is a phrase that I feel inaccurately describes people).  Our relationship isn’t perfect.  Our lives aren’t perfect.  We’re not perfect.  But we’re the perfect “wholes” for each other.  We enrich and complete each other.  All the struggles, the complications, the disagreements, the deficits, and the inadequacies mean nothing compared to this.

Together we are whole and the little things prove it so.

First, I took a quiz from PsychCentral:

They call theirs an Autism/Asperger’s Screening Quiz.  I scored 33.  They say if you score 34 or more autism is likely.  If you score between 30 and 33 autism is possible (which is where I fit in according to this quiz).  If you score 29 or less, no autism.

This puts me at the cusp of the criteria, however I found their questions to be rather stereotypical than definitive.  It makes it rather difficult to feel confident about the results.  Particularly, I find this passage to be bothersome:  “Based upon your responses to this autism screening measure, it appears that you may be suffering from an autism spectrum disorder, or Asperger’s disorder. People who score similarly often qualify for a diagnosis of autism or Asperger’s,” (emphasis added).  No test of this nature can indicate whether one is suffering or merely experiencing.  This presumption betrays a bias that I find rather untrustworthy.

Next, I took an Aspie Quiz on RDOS.net:

This site kindly provided HTML code, so I can share the results.

The summary is as follows:

Your Aspie score: 146 of 200
Your neurotypical (non-autistic) score: 58 of 200
You are very likely an Aspie
Your MBTI type: INTJ

Next, I went to a site I’m unfamiliar with that offers what it calls an ASC-Plot:

They also kindly offer HTML code, so there’s a visual.

And here’s the summary:

0 indicates no autistic component, 10 indicates a strong autistic component. The components of this plot are outlined below:

• Repetitive or restricted Behaviours and Interests (RBI) - Stereotyped, repetitive behaviours and interests
• Social Impairment (SI) - Social understanding
• Language problems (L) - Speech, words and sentences
• Planning, Organization and Concentration problems (POC) - Cognitive skills related to being able to plan, organise and stay focused
• Imaging and Recall problems (IR) - Visualisation, imagination and remembering past events
• Reasoning and Problem solving problems (RP) - Cognitive skills related to rational deduction and working things out
• Sensory problems (S) - Impact of senses
• Motor problems (M) - Control of own movement

And my scores are:

• RBI =7
• SI=8.25
• L=3.75
• POC=7
• IR=8.25
• RP=4.5
• S=7.5
• M=4.25

I think I can say with confidence that I’m not neurotypical, but I knew that.  This didn’t make me want to go out and get a diagnosis though.  Not because I’m convinced I’m not an Aspie, but because there are so many barriers to a diagnosis I’m not sure it’s worth the energy.

“Charity” as the word is used in the King James Bible is synonymous with Christian love.   Specifically, charity is defined as:

The highest, noblest, strongest kind of love, not merely affection; the pure love of Christ.  It is never used to denote alms or deeds or benevolence, although it may be a prompting motive.

Holy Bible, King James Version, 1979, published by The Church of Jesus Christ of Latter-Day Saints.

“Charity” when defined as Christian love is never pity.  Pity involves a sense of superiority:  when you pity someone, you look down on them and think they are somehow less than yourself; less fortunate, less talented, less valuable.  Less.

Matthew 25:34-40

Then shall the King say unto them on his right hand, Come, ye blessed of my Father, inherit the kingdom prepared for you from the foundation of the world:

For I was an hungered, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in:

Naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me.

Then shall the righteous answer him, saying, Lord, when saw we thee an hungered, and fed thee? Or thirsty, and gave thee drink?

When saw we thee a stranger, and too thee in? or naked, and clothed thee?

Or when saw we thee sick, or in prison, and came unto thee?

And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.

While “charity” is not used in the Bible as an action, if it were to be an action, then this would be the actions of which it would speak.  The phrase the least of these my brethren is misleading, apparently.  Some people associate it with pity, because if they are the least, then are they not less than us?  Jesus, who tells the parable, is NOT agreeing that those who are in need are, as so many perceive them, of less worth than those who give; He is comparing the least of these my brethren with a King and as brethren of the King.  Giving unto them is not an act of pity; it is an act of charity.  It is not done because you pity them and look down on them; it is done because you love them and feel compassion for them.

Compare this passage with the following hypothetical scenario:

A woman walks into the church with a Crockpot of hot, home-made soup.  She sets up her offering on the table and gets to work preparing the space for the homeless who will be coming in.  It is 5:30 and very cold outside.  The doors are locked, but she hears the shuffling of people on the outside.  The doors will open at 6, so they have to get busy to get everything ready.

At 6 pm, the pastor opens the door and the stiff, cold people wrapped in layers of poorly mended and unclean clothes shuffle in.  He lines the people up along the buffet so they each can get their dish, while the woman busies herself filling bowls with the hot, savory soup.  The gentleman next to her is putting together sandwiches, some turkey and some ham.

“It’s so sad,” the soup lady says to the sandwich guy.

“I know.  Everyone’s shivering.  We should have opened the door earlier,” the guy says.

These words startle the lady.  “But we weren’t ready yet.”

He smiles at the young man who just made it up to them.  The soup lady hands him a bowl, and prepares another.  The sandwich guy asks, “Would you like turkey or ham?”

“Ham, please,” he says in a gravelly voice that sounds like it doesn’t get much use.  The man takes one of the sandwiches heaping with ham, and asks him whether he’d like mayonnaise or mustard.  Before the young man can answer, the soup lady pipes in, “You see, it’s just so sad that all these poor people can’t find work.”

The young man’s cheeks color, but she doesn’t see him.  His gaze goes dark and his shoulders slouch.  He takes his sandwich and his soup, his milk and his apple, and even his little cookie into a far corner and eats in silence in the draftiest part of the church hall, while families and individuals gather under the blowing heat from the vents.

When everyone is served, the sandwich man tries to talk to him.  But the young man shakes his head.  “She don’t know,” he says.  “She don’t think.”

It’s not an accusation, but his voice is full of sorrow.  Neither of them will ever know that this man works twelve hours day, six days each week, working two back-breaking jobs.  The soup lady couldn’t imagine it.  Yet, he comes to the soup kitchen, because he doesn’t leave himself enough to have more than two meals a day.  Even working so hard, he cannot afford to because so much of that money he works so hard to earn has to go to his mother’s medical bills and his children’s tuition into the one private school that takes children with special needs.

The sandwich man tried to show love; the soup lady only felt pity.  Pity is not about love.  Pity is about making yourself feel better by exposing yourself to the misery of those who are so much worse off than you.  They’re not people; they’re certainly not brethren.

This is why I see pity as being the cousin to bullying, not to love.  Bullying is about making yourself feel better, too.  Instead of the passive harm you do to people when you pity them, you’re harming people actively, intentionally.  That’s the only difference I see between pity and bullying.  You’re harming people either way; you’re looking down on people either way.

Love isn’t about you.  Love is about giving yourself to others.  You may be called to give your heart or your time, your money or your ear.  But you are called to give.  Love—the pure love of Christ—is about recognizing the humanity in others and celebrating it.  You give not out of obligation, not because you feel sorry for them, but because you recognize their need and want to share yourself and your possessions with a fellow human being.  That’s charity.  Pity and charity should never be confused.

Being open-minded does not prevent one from having strong, even near-immutable beliefs.  For me, one of these beliefs is the importance of ethical and moral behavior.  For clarification, I distinguish ethical beliefs as being wholly individual and moral beliefs as being those that are formed in conjunction with a socially recognized belief structure (often, but not exclusively, religious in nature).  For example, Catholicism is a moral belief system.  Ethical beliefs that are formed in conjunction with a belief in and adherence to the Catholic religion are moral beliefs.  In kind, science is a moral belief system, which can (but is not always) practiced with the adherence others give to religions.  Ethical beliefs that are formed in conjunction with a belief in and adherence to science are moral beliefs.  I care less what your morals are based on, and more on how highly you raise your standards and how much you strive to follow them.  Any belief system, when practiced with the requisite high standards and effort, makes you a beneficial force (though others may consider your standards and efforts misguided) unto the rest of humanity.  And that, for me, is the crux.  If your beliefs lead you toward benefiting others, then I would hold that your ethics are good; if your beliefs lead you toward self-gain at the expense of others, then I would hold that your ethics are bad.  Having good ethics, of course, is insufficient if you don’t strive to live by them.

So, one of my immutable or near-immutable beliefs is that everyone can choose to have high ethical standards and everyone can strive to live those standards.  For this reason, I have never held developmental disabilities or lack of sanity as a sufficient “excuse” to justify or explain away unethical behavior.  For example, I’ve always believed that a mass murder is no less responsible and no less punishable, just because he happens to be insane.  A man is no less responsible and no less punishable for raping another human being, just because he happens to be developmental delayed.

I have thought for quite a while that my ethical and moral standards were, well, immutable.  I couldn’t imagine any piece of information that would shake these beliefs.  Then, in reading from a textbook, I ran into two little words that carried a punch that knocked me off of my proverbial socks and high-horse all at once: morally challenged.

As I started this discussion, I said that I consider myself to be open-minded and this involves re-evaluating my prejudices when faced with new information.  Thus, when I ran into this statement I had to stop and re-evaluate my position:

Another key contributor to a person’s ethics and morality is his or her level of moral development.  Some workers are morally advanced, while others are morally challenged—a condition that often develops early in life.

The Fundamentals of Organizational Behavior, 4^th ed., by Andrew J. DuBrin, 2007, pg. 75

Hm?  Moral deficiencies described in the language of disability.  You know, that makes a reasonable amount of logical sense—I can’t just dismiss it out of hand.  But, the implications (at least for me) are rather huge.  So, what to do?  Research!

From what I can gather, the above passage refer to (without actually discussing) Kohlberg’s Theory of Moral Reasoning, which I found in this link (it’s a PDF of a chapter from a textbook).  The link had the following table:

It does not assert at which level someone would need to be at in order to be considered “morally challenged.”  I also found the following PowerPoint presentation online.  This explores how contemporary U.S. values (as they’re taught) are affecting society (psst, it’s not good!).

One thing the PowerPoint suggests, which I’m going to say flat out, is that it does not seem likely that contemporary U.S. society will come to see being “morally challenged” as a disability any time soon.  It seems, rather, that we encourage this state.  Yes, I know—you’re shocked (sarcastically speaking).

But if being morally challenged should rightfully be considered a form of developmental disability, which the above theory implies even if it were never explicitly stated, then should I not take that into consideration when I try to hold others to my standards of ethical development?  (I reiterate: this doesn’t mean I believe everyone should share my ethical and moral beliefs, but that they should develop postconventional moral reasoning skills and have high standards of ethical and moral behavior of their own).

To clarify, I do not believe that someone’s value or inherent worth should be subject to their intellectual development or capabilities.  Nor do I believe that someone’s value or inherent worth should be subject to their physical development or capabilities.  If moral development can be similarly hindered, impaired, or “capped”, then should I not extend the same sense of value to those who are morally challenged as I would to someone who his intellectually or physically challenged?  My instinctive reaction is NO!!!!  People who are morally impaired, but are not impaired in any other way have done this world great damage; they continue to do so.  I resist, on a strong emotional level, giving them any room for “excuses” like having a disability.

But, then my own ethics kick in.  Ethically speaking, part of the reason for not de-valuing someone with a disability is because having the disability is not their fault (this is only part of the reasoning; I’m not suggesting this is the best or most important reason).  If someone is morally challenged, and thus commits an immoral act, would it also be “not their fault?”  Not to mention (this is one of those much more important reasons) that, despite the harm they do, they still have inherent value as a fellow human being.

I’m torn.  I really am.  Emotionally, I find this “excuse” unacceptable.  Ethically and intellectually, I stand back and look at my reaction and see some of the same unreasonable prejudice flung at the friends and family I care so dearly for and write so much about.

Is being “morally challenged” a disability?  And how does the social model influence that?  Socially speaking, being morally challenged is an asset.  It lets people rationalize doing all sorts of things for the sake of self-interest.  Therefore, if the social model is exactly right, then being “morally challenged” isn’t a disability at all.  (Otherwise, I’m misunderstanding the implications of the social model, which is entirely possible.)  In fact, if the social model were to apply, then being morally developed would be the disability and all those unethical people should offer us accommodations to compensate for our lack of unethicalness.  Which, of course, is absurd on two counts:  1) I don’t want to gain advantages through mine or anyone else’s unethical behavior, which would include accommodations of this sort; 2) unethical people would not voluntarily offer accommodations of this sort and, were this line of thinking valid, ethical people would lack the power to enforce the accommodations on those uncooperative “unethicals.”

However, if there is something inherent about the state of being disabled, something that is exacerbated by the social model, then whether it is recognized as such or not being “morally challenged” would be a disability.  If so, then what does it mean?  Are people who are morally challenged fully culpable for their actions as is someone who is not morally challenged?  If not, then how would we measure that to determine what level of responsibility they hold?  Or am I simply taking a theoretical explanation of ethical behavior too far without enough evidence to justify the theory?

It’s times like these when I almost wished I was a prejudiced, unethical schmuck who could cling to my beliefs even after they’ve been legitimately questioned.  This re-evaluation process takes work, and it’s rarely simple.  Am I resisting this re-evaluation on a purely emotional level or is there a real flaw with my analysis thus far?  I don’t know, so I have to pick at it and put it out there.  It would be simpler if I just accepted that my prejudice was right and good, and left it at that.  But, then again, the sheer number of people who do that is one of the things that makes this world such a difficult place to live.

Sleep has thrust itself up as an unwelcome priority in my life.  Generally, I prefer to get about six to seven hours of sleep.  It’s adequate, without taking up too much time.  When I get four to five hours of sleep in a day, I tend to be sleep-deprived, which is not conducive to productivity.  If I get eight to nine hours of sleep, then I am not able to get all I “should” do done.  This last week I’ve been getting ten to fourteen hours of sleep a day and it’s not good.

Sure, it means I’m more likely to recover from this bugs that’s kicking my, well, you know.  But really, how important is health anyway!?!  Okay, so, yeah, that’s important, but…  I don’t like not getting things done!

So, my house is a mess.  My newly remodeled bathroom (with working pipes!) has yet to be refurnished.  I’m behind in my writing.  I’m way behind in my Purple Pen work.  I’m just barely keeping up with my homework.  And I haven’t blogged in over a week.  Oh and today is Alex’s birthday and I have yet to get his present.  To top it all off, my driveway is weighted down with about a foot of snow—which is, of course, not counting the end of the driveway, which has a good deal of the road’s snow on it, too.  And I’m still tired after twice as much sleep as I usually get in a day.

On the brighter side of things, shoveling snow is a great way to clear out congestion from the lungs.  Sure, it’s unpleasant, but getting that garbage out of there is what’s important, right?

Unlike past forms of segregation, my son doesn’t spend his entire day in the special education room.  He visits the regular classroom and his peers are told that, even though he doesn’t stay in their room, he is part of their class.  He comes in with an aide who helps him participate.  Then, when it’s all too much, she takes him away.  The school system recognizes his educational needs differ from those of his peers and claims those needs cannot be met in a regular classroom.  I know my son’s needs are not met in a regular classroom, but does that really mean they cannot be?  I grew up learning that “different but equal” is not equal at all.  Sadly, that doesn’t apply to my children or others like them, because our society fails to recognize people with atypical neurological development as equals at all.

Some refer to this forced inequality as disabilism and see it manifested in pervasive ways throughout our society.  Disablism refers to the societal tendency to single out, exclude or mistreat people with impairments, because of those impairments.  Segregated classrooms for the cognitively disabled are only one example of disablism.  Disabilism is institutionalized into the public education system, in part, by the behavior of teachers, service providers, and administrators that Dr. Thomas Armstrong, an educator and author out of California, calls the disability discourse, which he described as “an institutionalized discourse consisting of specific words such as ‘disability’ ‘disorder’ ‘deficit’ and ‘dysfunction’ to describe the lives of these children.”  These societal behaviors shape the environment in which all of our children learn and grow.  Telling children a segregated child is part of their class, while well-intentioned, still fails to integrate that child into their class.

Unfortunately, the regular classroom is not only designed to exclude specific students from the learning environment it fails to include any child in the learning environment.  The public school system is designed to teach standardized curricula.  It is not designed to teach the individual students expected to learn that curricula.  Individual teachers can transform that environment into something special, but this ability is not a requirement for employment and often the resources to do so must be found outside the public school system.  This fundamental flaw is not the fault of individual teachers, principals, or school boards, but is built into the educational system itself.

Our children are unique with individual needs that can only be met when they are treated as people, instead of a homogenized group.  Our children do not come standardized.  Yet, our educational goals and the learning environment we create to meet those goals are standardized.  Our children get pushed through the system regardless of what they learn.  Unless, of course, their needs stand out so much that the system rejects them.  The child who does not and cannot fit the standardized mold is diverted into the special education system.  There, they face the unfortunate reality that they are not deemed equal in our society.  They are different, but not equal; and disabilism and the disability discourse shape their futures.

Neurodiversity is a two-fold concept that can change the public educational system for all children.  Neurodiversity refers to a civil rights movement crafted by autistics that seeks true equality for people with cognitive disorders and mental illnesses—founded on the belief that neurological differences are natural human variations and deserve the rights, accommodations, and acceptance any other human difference deserves.  Neurodiversity also recognizes that neurological development is not standardized.  Everyone develop unique neurological processes that should be recognized, respected, and facilitated.

Everyone is neurologically diverse.  Everyone has unique educational needs our education system fails to meet.  Instead of designing an education system that meets the individual needs of our children, we have designed an education system that meets societal needs for measurements, cost-control, and resource allocation.  Changes to IEP legislation that require recording strengths as well as needs, separating a grade into groups that study different levels of mathematics or reading, using inclusive language, and telling students that those segregated in the special education system are part of their class address surface issues.  But the problem goes much, much deeper.  Our education system is fundamentally flawed.  It does not meet, nor is it designed to meet, the needs of the students we wish to educate.

Our children deserve an education system designed to meet their individual learning needs.  Our children deserve a learning environment that teaches children, not curricula.  Our children deserve teachers that are trained and qualified to teach them as individuals, recognizing and meeting their individual education needs.  An Individual Education Plan shouldn’t be a privilege reserved for students with special needs, but should be provided to all students.  Our school systems need holistic change.  We need to re-think how we teach, what we teach, and who we are teaching.  We need to rethink the qualifications our educators need and we need to rethink the needs our schools should be required to meet. 

Change comes slowly and painfully.  Holistic change may be easy to envision, but it is very difficult to achieve.  It won’t happen this year or next year.  But it can happen.  Change requires a lot of work, a lot of planning, and often a new allocation of resources.  An individualized education provided by well-trained, highly-qualified, and fully-resourced staff doesn’t come cheap.  But our children are our future and they are worth the work and they are worth the money.  The real question is:  Will we afford our children the respect and consideration they deserve?

The reason I want to write is because I cannot imagine making a living any other way and still being happy.  I’ve tried various jobs and experienced various degrees of unhappiness doing those jobs.  I love to write, and as long as I believe what I’m writing, I’ll write just about anything.  Getting paid for it is just one of those bonuses that life throws at me every now and then.

The reason why I write about neurodiversity is different.  Blogging, of course, is cool, because you get to interact with people spread across the world in dialogues you’d not likely have in any other way.  But writing for publication goes beyond even this.  I’m working on a piece about The Autism Acceptance Project.  E-mailing back and forth with Estee is always great.  I’ve enjoyed her work for years and this project (mine, not TAAP), started expressly because of that friendship and my admiration for her work.  Busy as she is, I’m pretty sure I could e-mail her just to say “Hi.”

Today, I had an opportunity I probably wouldn’t have attempted without this project.  I got to call and speak with Michael Moon!  And I have to say it again:  “Wow!”  Of course I’ve spoken with autistic adults before (I can’t imagine having a child diagnosed with autism and not seeking out autistic adults for their insight, though I know it happens), and I always have to shake myself afterwards and try to understand where the prejudice comes from.   But, wow, is Michael an impressive person!

His photography is inspiring, his music is tingling (in a very good way), and his words are powerful.  Get a taste of his work and know that is his time to devote to the site hasn’t quite caught up with his aspirations for its content (which means there’s more to come).  But the content is rich and moving as it is, so check it out!

Busy or not, I couldn’t let this “great” fly by without one last “Wow!”