Friday, December 16, 2005

Working through it

Here is the letter I am sending the parent of the child who harassed my son. I don't hold out a lot of hope that the mother will respond appropriately given my experience of her on the telephone last weekend. But I need to start a paper trail going. I fear this will escalate to police/social services.


After unsuccessfully attempting to discuss matters with you over the telephone last weekend, I feel compelled to write you this letter. There is a discrepancy in our children's reporting of the events that occurred on Sunday, December 11, 2005 at the ###### sledding hill.

My son maintains that your daughter, ******, both verbally and physically harassed him, pushing him down the hill and causing him to hit his head on the ice. You stated that your daughter claimed my son was the aggressor.

We may never know exactly what happened last Sunday; however, we do have control of what happens from now on. I am formally requesting that your daughter stay away from my son. I have asked my son to avoid contact with your daughter.

My son has reported witnessing prior instances of *****’s verbal and physical aggression and inappropriate language with other children and I am concerned about this pattern of behavior. Both you and your daughter use language that is unacceptable in our home and I don’t wish him to be exposed to it any further.

I expect that you will take this letter seriously and heed my request to have our children stay clear of one another. In the future, if I discover that your daughter has bothered my son in any way, I will be forced to take further action through the ++++++ Police Department, the school system and/or the Department of Social Services.

Tuesday, December 13, 2005

Navigating the Bumps

No. This is not a post about skiing, although that is one sport we all love as a family. The bumps are social ones, and this bump is the size and shape of a mountain.

My 7th grader, who is a big and strong kid, a green belt in karate, is being harassed by a 7th grade girl whom he outweighs and physically outmasters.

But she seems savvy in the ways of social harassment in a way my son will likely never be.

My son reports that this girl verbally accosted him on a sledding hill near the house. When he tried to ignore her and resume sledding, she shoved him and he went down unprepared, fell and hit his head on the ice. He was furious, but understood the 'rules' about retaliation: he went home.

I called the parent, asking her to speak with her daughter about the incident. The mother became incensed on the telephone, rude, swearing at me and ultimately hung up. I called her back. She claims that my son accosted her daughter, both verbally and physically.

Now I know all kids are capable of lying and of making bad choices. But I *do* know my son and he is a lousy lier. He also lacks the social guile to lie to this extent. I also have outside corroboration about this girl's previous aggressive behavior.

My son feels believed and safe within his family. That's no small feat. But he is frustrated, angry, and scared, not knowing why this girl is targeting him or what he will have to do to stay safe the next time.

I can't keep him from experiencing the bewildering array of cruelty in the world. The bumps will happen. And I will not always be there to help him navigate.

I want this girl to understand the hurt my son has experienced--not the physical hurt. That fades. But the emotional hurt that comes from not being able to trust in the 'rules' of social interaction that are supposed to keep him safe. But maybe she already knows--maybe she hopes to inflict that kind of pain. I don't understand it and it makes me doubt my abilities as a parent. How can I help my son when I don't understand the world we have to inhabit?

Thursday, December 01, 2005

IEP Annual Review--Beware the Unintended Consequences

My son's annual review meeting is tomorrow. I should be asleep--it's midnight--instead I'm sitting here quietly obsessing about what's wrong with a system that has so many negative unintended consequences.

"Where all the women are beautiful and all the children above average" (With apologies to Garrison Keiler)
He has an IEP--the Individualized Education Plan that opens the magic doors to classroom accomodations and access to the personell that can shift his school life from living hell to something resembling bearable. But starting off with the name--shouldn't *all* education be individualized? Each child will learn best in idiosyncratic ways. It makes sense for the adults in the system to be flexible in the way education is delivered so each kid gets what he or she needs.

However, that very document, the IEP, is predicated on *impairments*. It, by its very nature, focuses primarily on the things my son has difficulty with or cannot do. I have certainly mused about this before, but there are dangers in letting a list of impairments define reality.

"Accentuate the Negative. . ."
Although provision of 'special education' services is a federal mandate, it is not fully funded at the federal tax level, and so paying for the implementation of federally mandated services falls to the states and local districts. We all know there is no endlessly refilling tax coffer. (I envision some 'Willy Wonka'-like everlasting gobstopper) Districts are between the proverbial rock and hard place. So are parents. So we must accentuate the negative to keep our children's needed survices.

"You say potato and I say Pot-ah-to. . . let's call the whole thing off."
A parent's biggest fear is that once a child gets what he or she needs and starts to thrive, the school will begin to pull back. But that is in fact the success point--the point where everyone has figured out what the child needs to do well. That needs to become the baseline, not an argument for releasing the child from an IEP.

"To be or not to be. . ."
So all this is fairly general and abstract. Lets really take a good look in the mirror here. My kid's an Aspie. I'm an Aspie. Is there a point where it ever becomes useful to disclose this to the team? If I thought for a moment that my disclosure would educate the school, would let them see me as a role model for my son and others, would want to use what I know to help others in the school, I would tell them in an instant. My fear (what keeps me 'in the closet' about this) is that they will completely discount what I say because I'm an Aspie.

"Time Flies when you're Having Fun. . ."
The other irony is that the areas in which my son needs the most guidance are not traditionally academic concerns. I feel the school is doing a poor job with the social and emotional issues that plague my son. Despite a zero tolerance approach for 'bullying', in actual day to day middle school life, my son experiences quite a large degree of both physical and verbal bullying. By the very nature of AS, he will have difficulty developing and implementing the strategies to assure his social and emotional safety in school. Yes, middle school years are tough for all kids. they don't need to be make frankly impossible for my kid.

/end incoherent rant at midnight-thirty.

Thursday, November 10, 2005

A Parent's Pride

My boys are both wonderful young men. At 9 1/2 and 12, they are maturing before my eyes. We have their school photos arrayed on the fridge and scanning across them is like seeing a time-lapse movie. My eldest has photos from Kindergarten to the most recent at grade 7. My youngest from K through 4th grade. Each stage, each phase has passed in a blink of time. When I read over my own journal from say 1997, the issues that consumed me--day and night--are not even on our radar screen.

Things change. Children grow.

When P. was 3 years old, a change in his normal nap time would lead to explosive melt downs. Long before Hans Asperger was even a twinkle in our diagnostic eyes, our family had already made some of the structural changes that P. needed to succeed. We previewed changes, practiced social interactions, used deep pressure hugs for calming, kept a predictable schedule. No one taught us to do these things; they were what our son needed.

Things change. Children mature.

Now he is tottering on the edge between childhood and adolescence. Some days he leans closer toward one than another, yet he is handling the dangerous quicksands of impending teenage-hood with poise and thoughtfulness.

Things change. Our understanding shifts.

In respecting the struggles and triumphs of my boys, I am healing something in myself. I can look back at my very private battles in childhood and wrap the me-who-was in a deep, fierce hug. When I help P. slice through the tangle of social puzzles, I am doing the same with my child-self. In giving permission for my sons to have their strengths and weaknesses, I also give myself permission and learn to work with my nature, not against it.

Tuesday, October 25, 2005

"All kids are like that"

The dreaded phrase that puts me in the awkward position of justifying the very impairments I strive to help my son compensate for. That statement, usually offered by way of support, often leads to 'one upsmanship' (or should I call it 'one *down*smanship') of accentuating problems and reinforcing stereotypes.

On the one hand, I would like to claim membership in the community of more typical parents with more typical developmental needs and crises. On the other, living with AS does come with its own set of issues. I once heard Carol Gray say that AS kids are like all other kids. . . only 'more so'. I really liked the way she puts this.

Just because someone is on the spectrum, doesn't automatically mean everything he/she does or says is *because* of AS. But being an "Aspie" (and I know not all folks like that term) is more than a collection of descriptive signs and symptoms in a medical text. It's a feedback loop--our central processing/wiring effects our developmental path, our developmental experiences effect out central wiring. AS is not just *what* we are, but also *who* we are.

So saying "all kids are like that" or "all kids do that" or "all kids go through that" both minimizes the real struggles that individuals with AS/Autism have as well as (overtly or covertly) accentuates the gap between NT's and AC's.

Saturday, October 15, 2005

A Throrough Deconstruction of the Brottman Article

Please do read Kathleen Seidel's excellent article with its section by section refutation of the "Nutty Professor" commentary referenced here.

She has done a wonderful job at investigating Ms. Brottman an exposing her supposed credentials as a psychotherapist.

Bravo, Ms. Seidel.

Thursday, September 22, 2005

When Confidentiality Equals Divide and Conquer

The intent behind special education law is laudable: all children deserve an appropriate education in the least restrictive environment possible. I doubt you could find many people who would argue that automatic institutionalization or segregation of students with educational needs is a good thing. And I think over the past several decades we’ve learned a few things about education. Probably most notably that all students do not learn in the same way and that education is collaborative; i.e., students construct knowledge and learn from one another.

So diversity in the classroom is useful for all children. But the push to apply rigid standards to all children has created some unanticipated pressures for kids, like my son, who have ‘hidden’ challenges. In the effort to preserve confidentiality, and on the advice of our school, the children he interacts with on a daily basis do not know he has Asperger’s Syndrome. On the surface, this seems like a wise idea: why give children any reason or label to make fun of another student. In practice, it doesn’t work. So my son’s ‘disability’ is confidential.

Guess what? The kids know he is different. Non-disclosure does not change his wonderful quirkiness in any way. But it does cut us off from one another. Wouldn’t it be great of all the Aspie kids in middle school could form an advocacy group? Or have the parents create an email listserve to share gripes and successes? No can do. The school cannot disclose that information and we are all so wrapped up in helping our children ‘pass’ that we inadvertently give the message that being themselves is not OK.

And what about disclosing to the other children? If my son had CP, walked with crutches, or was blind, then maybe, just maybe the other kids would cut him some slack. Maybe the teachers wouldn’t forget that he has auditory processing delays and fine motor control issues that affect the legibility of his handwriting. But because he looks like any other kid and has academic strengths, there is an expectation that he *is* like any other kid.

Well, he isn’t and I should know. I was also not like any other kid. There was no language to explain AS in the 1960s and 1970s, but like my son, I’m an Aspie. I emerged from my childhood with some hidden scars, but also with many successes due to a loving family and meeting an amazing man in college who has been my husband for 17 years. I can ‘pass’ for normal, or neuro-typical as we say in the Aspie world, but I am most comfortable alone or with other slightly out of phase folks. I am through being afraid or ashamed of who I am. I am through with listening to the messages that isolate me from those who could be friends and allies. But mostly I am through believing in the wisdom of divide and conquer.

It is time for a change.

Wednesday, September 14, 2005

Diagnosis by Proxy and other Logical Fallacies

In the 9/16/05 issue of The Chronicle of Higher Education, Mikita Brottman writes an opinion piece titled "Nutty Professors." In it she makes an argument about the essential inapropriateness of accommodating to potential behavioral issues that she identifies as accompanying Asperger's Syndrome (AS).

It would be one thing if Ms. Brottman were a neuropsychologist or psychiatrist in the autism field. Actually, according to her biography, she is "a professor of language, literature, and culture at the Maryland Institute College of Art." And the argument she makes is based on her reading of the APA diagnostic criteria for AS and on her experience with two faculty members who did not pass their year's probation.

"I can recall two instances where candidates were hired who, in retrospect, appear to have had many of the characteristic personality traits of Asperger's. Both had stellar résumés and impressive lists of publications; they were dedicated and professional teachers, with superlative references. . . .

Neither lasted more than a year in the job. In the first case -- and I'm disguising some details to protect their identities -- the new hire turned out to be dismissive of any student incapable of meeting her impossibly high standards, disturbingly fastidious, bad-tempered, and intractable in meetings. She was also arrogant, petty-minded, and obsessed with such matters as the relative size of her office and quality of its furniture. In the second case, the new star revealed himself to be an abstemious hermit and hypersensitive to imaginary slights; he was also a compulsive hoarder, and frugal to an unusual extreme. He was discovered to be actually living, Bartleby-like, in his office."

Ms. Brottman is making a host of assumptions that she is not qualified to make. First that these two individuals have Asperger's Syndrome, second that their performance difficulties were in fact related to any neurological difference at all, and third that this experience can be generalized to a population of individuals with Asperger's Syndrome.

I find it illuminating that Ms. Brottman considers AS as character disorder (that would be in the same family as Borderline Personality disorder). She states:

"Consequently, like most character disorders, Asperger's is a controversial diagnosis." (emphasis added)

Most researchers describe AS as a neurobiological issue. She goes on to say:
"If our hires had permitted themselves to accept a diagnosis of Asperger's syndrome (assuming that was, indeed, their condition), would we have been expected to adapt ourselves to the neurological differences that make them obsessive, miserly, rude, and truculent?"

This is an interesting statement on many levels. The language she chooses, eg, 'permitted themselves to accept a diagnosis' makes it seem as if for those individuals a diagnosis would give them an excuse for and permission to continue their inappropriate behavior. In fact, a proper understanding of one's neurology enables the individual to compensate for his or her difficulties and alleviates difficulties.

She also 'blames' their "obsessive, miserly, rude, and truculant" behavior on a diagnosis that she has made based on casual reading. For the sake of argument, I am willing to posit that these two individuals may have had Asperger's Syndrome. If that is the case, there are at least two possible viewpoints regarding their bahavior. First, that their behavior has as much or more to do with base personality than neurological hard-wiring. Second, that anxiety and a stressful work environment triggered stress related responses that were misinterpreted as obsessive, rude, etc. In neither case is it appropriate to assume that these negative behaviors are an inevitable result of Asperger's Syndrome

At the end of the day, Ms. Brottman is guilty of the worst kind of generalization--that made from a sense of academic superiority. I must disagree with her thesis and her conclusions and hope she does not speak for either this publication or academia at large.

ADDENDUM: After performing a websearch, I discovered that in addition to being a professor of language, literature, and culture, Brottman is also a psychotherapist. Mikita Brottman MA, Ph.D--her identifying information can be found here.
I was unable to find any publications by her that dealt with psychotherapy or autism. Her bibliography seems to be limited to books and articles about culture and language.