"We are here. . ."

I'm blogging from our last day at Autreat and I keep thinking about the end of Dr. Seuss' "Horton Hears a Who" when the Whos of Whoville shout, "We are here, we are here, we are here."

If you don't know the story, Horton, an elephant, befriends a culture of microscopic people, the Whos, who live on a dustspeck.

Because the other inhabitants of the forest of Nool can't hear or see the tiny Whos, they believe Horton is insane and decide to punish him by boiling the dustspeck Horton is trying to protect.

No matter that Horton get bullied and harassed, he has faith in his friends and begs them to make as much noise as possible so the others can hear them.

At the end of the story, all the Whos begin to shout, "We are here, we are here, we are here."

I am aspie.

I am here.

We are here.

We must not allow the majority to silence us.

We must not allow our fear to silence us.

I will not be silent.

We are here.

Good news for the end of the school year

7th grade has been a difficult year for P. The academic requirements really ramped up this year from last year with probably twice the amount of homework each night. In addition to the workload, this was his prepare for Bar mitzvah year, with extra lessons with the Cantor, meetings with the Rabbi. Add to that the confusing mix of pre-teen hormones and the social minefield that is middle school, and it adds up to a lot for one young man to deal with.

There have been both high and low points to the year. Some highs: He connected right away with 2 of his 4 main subject teachers, finding a love of social studies (ancient civilizations this year) and math. He also learned and implemented some wonderful organizational skills around homework and planning. And as a 7th grader, had one of the secondary leads in the 7th/8th grade production of Shakespeare's "A Winter's Tale."

Some lows: Subtle and persistent teasing and social isolation. And although he was nominated to become a peer mediator for 8th grade, he wasn't selected. That was a huge disappointment to him and to me. I thought P. would be a wonderful mediator.

Today, P. came home jubillant--the happiest I have seen him in quite some time.

Tryouts for "As you like it" (Shakespeare) were last week. Callbacks were friday. P. was called back for readings of two of the main characters.

This morning, he found out he will be playing Orlando, one of the male leads in next fall's production.

I am so pleased for him to be able to end the school year on a high note, a success, and something to look forward to for the start of 8th grade.

Speaking at the ASA conference

In a few weeks, I'm taking part in two panels at the ASA meeting in Rhode Island. It's taken me several years to get to the point of feeling comfortable with something like this.

It's not the speaking part. I've been an invited speaker in dozens of national conferences over the past 20 years, I've guest lectured at Universities, been interviewed on TV and radio. But *all* of that has been in my capacity as a physical therapist and an expert in my sub-field. By all accounts, I am an excellent speaker--I don't read prepared remarks or simply recite the information on my slides, and I connect with the audience. No, the speaking itself is not the problem.

It's the "Hey, look at me, I'm a successful adult with AS" issue. I dislike calling attention to myself. I loathe being turned into "a self-narrating zoo exhibit". (A phrase I first heard from my friend, Phil Schwartz, though I don't know if it is of his creation.)

So why did I agree to speak? Partly because if I don't, than I miss an opportunity to change the conversation--to challenge perceptions in the 'NT' world about living on the spectrum. There is more than one paradox/danger here: If I *do* speak up/come 'out', then I risk personal stress-overload, thus reinforcing stereotypes of Aspie failings. And, invariably, some will simply deny I *am* an Aspie, simply because I can be eloquent and display emotional literacy.

And for the privilege of taking several days from my work (I'm in private practice-if I don't work, I don't get paid), upending my own typical schedule (stressful--'nuff said), spending time and energy preparing my talks, and exposing myself emotionally in a charged venue, I get to pay the ASA.

According to their website, it is a discounted rate. (Gee. Thanks.) In EVERY OTHER conference related speaking engagement I have ever had, I have been given free registration. Even for small organizations that could not afford to pay transportation/hotel/honorarium fees. The registration was free.

Can I afford the $135? Yes. That's not the point. The point is the ASA is, in part, drawing in conference participants (and income) *because* of the work my fellow speakers and I are putting together. We are the value added of the conference.

I wrote a polite email to the organizers pointing some of this out. I received a curt response thanking me for my concerns and a promise to discuss it with the powers that be.

So the ironic conclusion: I am paying, in real dollars, lost work, and personal 'cost', to present in 2 panels for an organization I am not sure I want to belong to because I feel I owe it to my community of fellow travelers.

What's wrong with this picture?

Hitting the wall

I'm almost reluctant to write this for fear that it gives the 'other side' ammunition to say how hard life is on the spectrum and wouldn't it be so much the better to have a 'cure' for Asperger's Syndrome. I also don't like to whine and I *do* understand how blessed I am with the support and love I have in my life.

Or maybe this is just my expression of a mid-life crisis and has little to do with AS, or raising kids with AS/NLD. I'm tired. Not physically tired, but emotionally tired. I spend a great deal of my life taking care of other people--both in my home life and my work life.

I've been a physical therapist for 20 years and I know I'm good at what I do. I specialize in working with people who have chronic pain and dual diagnoses (psychiatric and physical stresses). I think I'm burning out.

I'm so far behind in my billing that there are months of care provided I won't get paid for and the billing agent I've contracted with keeps threatening to quit if I can't get more organized and timely in submitting my billing. Whenever I think of dealing with my Medicare paperwork, I just cringe inside--the details and the following up are beyond me right now.

I missed almost a whole week of work earlier in the month with a bout of pneumonia and by the end of that week, was happier than I'd felt in quite some time. Getting back to work the following monday brought the same crushing stress right back.

I'm not looking for pity or for solutions, I'm just trying to work my way through what is 'garden variety stress', what is career burnout, what is related to my very Aspie self on the verge of overload.

I need to make some difficult decisions about my PT career, but I can't make them while I'm stuck in the day to day details of keeping my practice running. Currently, I'm planning on taking the month of August off from the practice if only to find a place where I can stand still and analyze what's going on.

"Maybe Sparrow" (a revision)

Because we are all works in progress, here is a revision of the poem I wrote for Charlie, in response to a blog post by Kristina Chew.

Maybe Sparrow

"I believe that the broken bird knew that it was broken." (Kristina Chew)

I am a killdeer pretending to limp,
leading danger away from our nest.

I sing the song I know best. It is not
always beautiful, but most nights it soothes

us both to sleep. This isn't about broken
things or crows. That black bird shivers

against the base of my spine. Morning
comes. A dark feather spirals to my feet.

You draw it across my cheek, flap it
in your hands, look up through the screen

of trees, a pinion primed for flight.
Sometimes I envy the mockingbird.

I thought I wrote it for her, but in fact I also wrote it for me. As a parent, (perhaps any parent, but as a parent of a child on the spectrum) I must be like the killdear mother--a ground nesting bird that when challenged by a predator will appear to be injured and limp, leading danger from her nestlings. When the predator thinks it has its meal, the killdear flies away.

"I sing the song I know best"--I am doing the best that I can. Perhaps not always the right thing, "not always beautiful", but at any moment, the best I can do for my lovely nestlings, my 2 beautiful sons.

"This isn't about broken things. . ." My life isn't defined by what we can't do, by what is difficult. Nor do I define my children's lives by what they struggle with.

"That black bird shivers. . . " But the fear is always my constant companion. Fear that I'm not doing a good enough job as a parent. Fear that my own AS blinds me to what my kids really need. Fear of what will happen in the wide world when I'm no longer around to advocate for my kids.

"A dark feather spirals. . .you draw it across my cheek" The world is full of beauty, if you know to look for it. And I share that wonder and beauty with my sons.

"pinion primed for flight" (Pinions are the bird's primary flight feathers) We are all primed for flight--made for growth and change.

"Sometimes I envy the mockingbird." The mockingbird can sing all the sounds it hears, I have one song, this one life. Sometimes I envy what my life might have been before AS entered my vocabulary. Sometimes, not all the time, not even most of the time. But sometimes, particularly when the greater world makes our lives so much more difficult than they could or should be.

I thank you, Kristina, for the inspiration to write this. May we all be "pinions primed for flight."

A Gift for Charlie

I am a poet. Perhaps that marginalizes me far more than being an 'aspie'. :) I find inspiration in many places--my children, the natural world around me, a strong emotion, beautiful words. When I read Kristina's blog post today, I felt moved to write.

I almost never know where a poem's images will take me when I first sit down with pen and paper. Writing poetry is a mysterious process of alchemy, of transformation. And it isn't until I finish a piece that its meaning comes thundering through me. This is still a draft and may undergo change, but then again, aren't we all still drafts? Still in the process of change? We are all pinions primed for flight.

Maybe Sparrow

"I believe that the broken bird knew that it was broken." (Kristina Chew)


This is not a poem about broken things
or crows. That black bird is only fear
huddled against the base of my spine.

I am a killdeer pretending to limp,
leading danger away from my nest.
Sometimes I envy the mockingbird.

I sing the song I know best. It is not
always beautiful, but it soothes
us both to sleep. In the morning

a dark feather spirals to my feet.
You look up through the screen
of trees, a pinion primed for flight.

ljcohen, 2006

Katherine McCarron, 2003-2006

On mother's day this year, a mother killed her 3 year old daughter. The daughter was autistic.

I cannot control the bitterness I feel when I think about this child and the mother who ended her nascent life. There is no distance I can maintain to study it without becoming enmeshed. I am a mother, an aspie, the parent of an aspie. I have experienced great sorrow, depression, and anguish (mainly in regard to my own assessment of my parenting abilities, not about my son) and have contemplated suicide (in the past). There have been times I wished some alien spaceship would abduct my boys, or that I could sell them on ebay (a recurring fantasy), but I cannot fathom ending their lives.

I wrote this poem mainly for myself--it is an attempt to channel the anger I feel and perhaps come to some peace with the pain.

---


If she were not autistic would she be wearing
a new dress today instead of the plastic bag

you slipped over her head? Her two year old
sister will grow up wondering. "If I am bad,

mother might kill me too." I am trying
to understand whose suffering you meant to ease.

Autreat

Once a year, my children and I spend a week immersed in autism-centric culture.

Autreat.

I love that name. Autism/Retreat. Not a retreat *from* autism, but a retreat *to* autism. A time in which I don't have to guess if the person sitting near me at lunch wants to have a conversation. I can look at that person's interaction badge--if the green tag is showing--a potential for conversation. If the red tag is showing, I won't intrude on that person's need for private space. Concrete. Simple.

Participants are asked not to wear perfumes or use scented personal care products. I don't have to wrestle with my gag reflex for strong smells.

No one will give me pointed looks when I fidget in a meeting or play with a squishy ball. No one will assume I'm bored or being disrespectful to the speaker if I don't stare at the podium.

If I get up and leave abruptly from a gathering, no one will take it personally. It will be understood that for whatever reason, I am overwhelmed and need increased personal space.

I was scared before I went to autreat for the first time. My boys were (I think) in K and 3rd grade; I was still coming to terms with 'coming out' (to borrow a phrase from another minority movement) as an aspie. I didn't ask my husband to come with us and it was one of the first times I attempted to travel on my own with my 2 children.

This may not seem like a big deal to many of you reading this. A grown woman, a professional, competent woman, taking a trip with 2 school aged kids to a campground where there would be children's activities and structure. But for me, it was huge.

I have a problem with direction-sense and driving on my own to upstate NY from the Boston area, where I had never been before seemed daunting. Planning to spend a week with strangers seemed frightening. That those strangers were individuals on the spectrum, including people who were autistic, seemed overwhelming.

I had created a little world for myself where when I stepped out of my house, I inhabited a persona who protected me from the vagaries of "NT" life. That persona was competent, resourceful, successful. But I paid a price in stress and anxiety for using her. Once safely home, I could indulge my sensory needs, my need for predictability and wind-down time. Me and my boys could be ourselves. Home was (and is) sanctuary.

But I needed to learn to be my aspie self beyond the door to my house. So attending autreat that first time was an act of bravery and of faith. A gamble. Would I belong? Would "they" (whoever they were) accept me? Was I 'aspie' enough? Or would I forever feel between two worlds, never fully inhabiting either? How would the kids deal with a non-verbal autistic adult? Would they be frightened? Could I trust them to honor an individual's personal space or interaction preference?

I was just a whole bundle of insecurities.

And in the end, the most difficult part of Autreat was coming home. As my friend Phil calls it, 're-entry'. Having to put on that "NT" persona felt like I was encasing myself in medieval armor--for weeks I was heavy, cumbersome; the memory of lightness almost impossible to hold onto.

In a little over a month, I will be able to shed that armor again for a week where I will be myself.

To use another metaphor, 51 weeks a year, I must immerse myself in a foreign country and speak a language other than my mother tongue. At Autreat, I no longer have to translate my language into another. My passport is always valid.

We are a Multitude

My son, P. is nearly 13 and we had a long conversation about friendship the other day. He had a very close friend for much of his elementary school career that he had initially met at preschool. When they were in 4th grade, that friendship and the others that P. had carefully cultivated withered away.

I can attribute part of that shift to differences in development. The things that P. was interested in were intellectually and socially a mismatch for other 4th grade children. His intellectual skills were many grades ahead of his peers; his social understanding several grades behind.

But that would only be part of the story. The biggest reason for P.'s social isolation that year was J. If P. was years behind the social development of his peers, J. was years ahead. And in that most cruel way that only socially adept children can, he picked off P.'s friends one by one. There were snide remarks in the classroom--just subtle enough that the teacher never caught them, but the other kids did. There was the not-so-subtle exclusion on the playground, the parties where the rest of the class was invited.

It was painful to watch and painful to re-live my own memories of such insidious bullying from childhood.

Now, years older and wiser, P. and I can talk about 4th grade and the hurtfulness of J. The friends P. lost have not reconnected and J. is still a ringleader and a popular kid. But among the curses of middle school are some blessings--it is bigger with more children and more opportunities to find a peer group. P. has a few kids he hangs out with at lunch and 1 close friend he plays with on weekends. He was involved in the school play this year and felt accepted by the other actors. For the most part, he seems happy.

I have told him again and again that these years are the most difficult. When he is in the adult world, he will find friends that group around common interests in a multi age environment. There is something very artificial about the way we age segregate children in this society. And that the very traits that make him stand out as different (middle school translation: vulnerable) will be what makes him appealing to potential adult friends.

Aspies are 'a multitude'--we exist simultaneously in many developmental pathways. Our intellectual age may be different from our social age and different still from our emotional age. The time these three 'ages' are most discordant is probably middle school.

Based on my own experience, I know the gap narrows later in life and things *do* get easier. There will always be people like J. I have had bosses like him and adults whom I thought were friends, but were not. But I have also made strong, lasting, and healthy friendships with good people both in the AS and NT worlds. The hurts of childhood don't go away, but they do lose the power to wound.

Autism Awareness Month?

April is the cruelest month. I believe that line is attributed to Shakespeare. It has always been a difficult month for me, a time where my depression flares. In the post before this one, I talked some about this--why the ambient energy of springtime seems to trigger my anxiety. I may never understand it, but life has gotten easier now that I can prepare for it.

So April is the cruelest month. It has also been named "Autism Awareness Month." And many activist autism parents would characterize autism itself as cruel--a 'devastating disease' that 'robs' them of 'their child'.

I find that attitude, along with the yellow puzzle ribbon, and autism awareness month itself disquieting.

How could I be robbed of a child I did not have? My son is who he is. He is not some changeling child left in the place of some idealized NT child. His thoughts wind around a brain wondrously complex and creative. He is a puzzle in the way any pre-adolescent child is a puzzle to his or her parent.

I don't have a yellow autism ribbon on my car, nor do I pay attention to autism awareness month (except with an annoyed confusion). How can I ever not be aware of autism and how it has shaped my life and the life of my son, my whole family?

I am aware of autism everytime I step into the grocery store with its harsh flourescent lighting, the visual clutter, the overwhelming array of choices in the cereal isle alone!

Autism is my shadow in every social interaction when I replay each conversation in my mind attempting to assess my performance: Did I say the right things? Did I make enough eye contact? Too much contact? Did I let the other person speak enough times? Was my body language appropriate?

Autism is there when life overloads me with conflicting tasks and I struggle to sort out what I must do from what I can do. It is a companion when I ache to comfort my son after some subtle but nasty episode of bullying at middle school.

Autism colors our lives, but it doesn't disfigure them. It makes many aspects of living in the world more difficult, but it brings gifts and boons. My fascination with words, my son's abiding passion and patience for animals and conservation are also part of autism.

So for me, the irony is that the NT world thinks we need an Autism Awareness month when in fact it is that same world that never lets me forget I am *other*.

"In May I Never Prosper"

Kristina Chew has been blogging of late about upheavals in Charlie's life this spring. And many in 'autismland' have been sharing about the chaos that Spring seems to bring to the lives of those on the spectrum.

I posted a long response to her blog entry today and it got me thinking about my own dread of Spring.

One of the things I said in my response was:

"Somehow the shift from winter to spring fills me with a terrible, restless anxiety and I feel like a lion in a zoo cage, pacing, pacing, pacing."

I don't understand why the return of the light triggers my depression and the loss of light in the fall does not. But there is something about the restless energy in early spring that sets my insides roiling.

In a poem called "Narcissus' Lament", I wrote this about Spring:

Worse,
I dread her favor; a glimpse
of her abundance, teeming below

the threshold of my senses. Crawling
on my skin--the relentless pull
to push and thrive, to thrust

through the crust of earth
that imprisons all of us, seed, shoot,
limb.

and

The light
that wakes us, makes us all delirious.

Perhaps it is just too much life, too quickly after the relative peace of winter. I adore the winter; the silence of snow, the cold of clear, starry nights.

In a poem called "Consort", I wrote of the relationship between Winter and her lover, The North Wind:

They embrace
through the longest night while earth's
pulse slows beneath them. They grant
the stillness, not of death, but of life
suspended;

In the winter, I know who I am. The spring is too much like chaos for me to feel comfortable with it.


Addendum:
The post title is my own out of context reading of the lyrics to a traditional Irish song, called "Rares Hill" sung by Mary Black. When I first heard it, years ago, it spoke to me about my dread of Spring. I recently tracked down the lyrics and it is 'may' as in 'will', and it references something completely different than my memory of the song indicates.

The real lyrics are:
"So it's may I never prosper, and may I never thrive/
In anything I take in hand as long as I'm alive/
If e'er I say I rue the day, my laddie had his will/
Success to Lady Mary's fair, and the back of Rare's Hill."

Sick days + homework=insanity

My son was home sick on tuesday with a terrible cold and a fever. He had a fit when I insisted he not go to school and now I know why he wanted to drag his sorry body out of bed and into class. All the work he would have gotten on tuesday was due today along with all the work he received on wednesday. Double work while still not feeling well.

How does this make sense?

He now faces a no-win situation: hand in what's already a day past due and earn a MAXIMUM of 50% on it, or focus on current homework, earning a 0 on the past due material.

This is 7th grade. Even in college, the standard was lose a letter grade on an assignment each day it was late. Losing half credit for one day's lateness seems rather draconian to me.

I certainly understand the need to motivate students to practice good study habits and time management techniques. But this policy penalizes a child for falling ill. My son is not lazy--he is extremely concerned about doing his work, both because he's intrinsically motivated to learn and because he wants to please his teachers. Tell me what is to be gained except increasing his anxiety level, from pushing a kid this hard?

Riding the Rails

Riding the Rails

It's your third birthday. We buy
a wooden train, a length of track,
an arched trestle. You line each car
precisely, laugh when the magnets
match engine to caboose, scream
as your clumsy hands marry
like pole to pole and the cars
spring apart. I memorize
the schedule of the Framingham line
so I can drive you to the crossing
in time for nap, the whistle of the 2:20
means an hour's peace, the lines ease
from your forehead and my jaw. I wait
as the rail's song fades, all hope
of me on that train, gone,
no ticket in my pocket.

I think I can, I think I can.

In the Rockies they chop up mile-long trains,
couple an engine every few cars, power
freight through the mountain passes.
I am the only engine here.

You wake grumbling like an old deisel.
If the signals are with me, I can make it
home before "Thomas the Tank Engine."
Mr. Conductor will take us
to the Isle of Sodor. It is lovely
there. You name all your friends, Thomas,
Edward, Toby, James. The phone rings.

Dad is on the 6:20. We race him
to the station. You slip a smiling
Thomas in my hand, your eyes and his,
cartoon round. I park the little train
on the dashboard pointing towards
tomorrow, our only destination.
-------------------

Before AS entered our vocabulary, it had already entered our lives. We just didn't know it. I wrote this poem today for a challenge in a poetry workshop I participate in; I hadn't expected it to take me back to those early and confusing days pre 'aspie'. I truly felt as if I was the engine, pulling the weight of a mile long train uphill every day. I was a first time mother, dealing with toddler behavior that wasn't in any of the 'books.' My own responses and coping seemed ineffective. There were days when I sat down and watched "Thomas" with my son and cried.

Life is much different now. The rails are straight and they point us toward a horizen that is full of possibility. I no longer dread the journey.

"Happy Star, Reign Now"

My son had a large role in his school's production of Shakespeare's "A Winter's Tale." It has been a whirlwind several months for him, juggling the demands of rehearsal, memorizing his lines and blocking, dealing with mountains of homework. The performances were last week and I could not be prouder of him.

Of all the 7th and 8th graders, in the cast, my son was one of a handful who seemed to speak the language naturally, without hesitation, and with a poise usually reserved for older children.

So many on the spectrum have spoken of acting as a way of belonging and as a way of figuring out how to inhabit a role that has benefits 'off stage' as well. Certainly, I found a place of acceptance in Jr High, High School and beyond in the theatre. Even in graduate school, I gravitated to the theatre group, directing a show in my second year of PT school.

I sat in the audience thursday and friday nights and thrilled to see my son so comfortable in his own skin, and in the skin of Lord Camillo of Sicilia. The lines of iambic pentameter rolled off his tongue, the lines that he and I have been practicing in our kitchen for weeks. And at the end of the play, he shared in the high fives and back slaps the cast traded with one another.

It is a happy star that reigns over my son's life now.

After reading Elizabeth Moon's "The Speed of Dark"

*NOTE* If you haven't read this book and you don't like to have the story 'spoiled' by information about the ending, do not read further.


I found this novel unsettling and I've spent the better part of the past several days trying to pinpoint why.

I think Ms. Moon did an excellent job in portraying the inner life and thoughts/perceptions of an individual on the autism spectrum. There was a clear sense of respect for the lived experience of autism. The main character, Lou, is portrayed as a full human being who grows and changes over the course of the story. In fact, I strongly identified with many of Lou's experiences and personality traits. There were many times in the story arc where I found myself nodding or smiling, having felt similarly in past real life situations.

I saw Lou as a strong protagonist and cheered for him as his life became enriched by the challenges he surmounted. He was not portrayed as a victim, but as a powerful self-advocate.

And then Ms. Moon chooses to end the novel with the 'deux ex machina' of medical treatment for autism and in a scant few chapters, negates the value of all of Lou's hard earned victories. He, in fact, becomes 'other' than Lou, and loses interest in all the people and things that once were the cornerstones of his life. In fact, one of the reasons Lou persues this treatment is to have a chance at what he sees as a normal relationship with a neuro-typical woman. When he sees her for the first time after his treatment, he says he feels nothing for her.

I found this terribly ironic and incredibly distressing.

As I was reading the book, I also wondered if a neuro-typical reader would find this distressing, but in other ways. Would that reader find the first 3/4ths of the book--in which we primarily see the world through Lou's first person perspective--distressing? Could they accept Lou's logic, his perseverations, his non-linear thinking? Or would they slog though that, then sigh with relief at the ending where Lou becomes a neruo-typical narrator?

I welcome your thoughts.

Sometimes it *is* that simple. . .

My son is happy. I see it in his smile when he comes home from school, in his quick 'debrief' with me, his endless teasing, his spontaneous hugs. At 12, he is still happy to give his mom a bear hug.

He's in 7th grade in a large middle school. He's an aspie. By all rights, happiness is not part of that mix. But he is happy.

So what have we changed that could create such a dramatic difference from just a month ago? Have we started him on some new powerful medication? No. Has the school suddenly expelled all the bullies? No. What has changed is so small, so easy, that I hesitate to attribute anything to it.

Lunchtime.

For the past year and a half, middle school lunch has been like decending into the ninth circle of hell for my son. He's had money extorted from him, he's had his food stolen, he's been kicked out of his seat, he's had his lunch dumped to the floor, he's been told, repeatedly, that he's stupid, a jerk, not liked, not wanted.

I've been talking about lunch and PE to his school team since the start of middle school. Finally, at this years' team meeting, the team came up with an alternate lunch option that was nothing short of transformative for my son. The 7th grade social studies teacher has an open invitation for certain kids to have lunch in his room. It's not a 'SPED' thing, just a group of interested kids and a teacher they respect. It's not always the same mix of kids, though my son has lunch there every day. And it's been incredible.

He feels as if he has a place where he belongs--where the kids accept and enjoy him. A safe, predictable place.

Total cost to the school district: $0.00. Value to my son: Priceless.

As for PE--that's another fight for another day.

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.

Dear XXXXXX,

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.

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?

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.

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.