Tuesday, November 07, 2006

Riding the (emotional) roller coaster

The past few weeks have contained some of the peak moments of my life and some of the most crushing, painful ones.

I held it together through planning P's bar mitzvah, juggling the details, dealing with months of anxiety dreams (dreams in which we forgot about the date, or we showed up at temple in jeans and t-shirts, or we forgot to send the invitations, or we forgot to hire the photographer, or only 5 people showed up, etc. . . ).

The day was beautiful and P was poised and did wonderfully.

Then 5 days later, he shined in his middle school production of "As You Like It"--a Shakespeare comedy of manners and gender identity. He managed to prepare for the bar mitzvah, deal with the demands of the lead role in the play with rehearsals 4 days a week AND keep up with his homework.

I don't know if *I* could have done this at age 13 and in the 8th grade.

But then the crash.

My father is seriously ill.

We didn't realize it at the bar mitzvah--in fact, we were all more worried about my mother. My father has been the family's rock. Several days after he returned home to Florida, he told us that his kidney's are failing. In fact, he is facing dialysis and soon.

They have been failing for quite some time. Nearly two years while his doctors have done nothing.

We circled the wagons.

Flew my parents back here.

Dealing with medical appointments and second opinions.

I don't have a lot of energy left to post here.

Monday, October 09, 2006

The Prodigal Returns. . .

It's been quite a long time since I blogged here last, and I'm sorry for that. The start of the school year brings a lot of stress to our lives and this year the level of insanity has been racheted up with P's upcoming Bar Mitzvah.

There was a time I wouldn't have believed this day would come. I am one *very* proud mom.

This is the speech I wrote for him.

"Things change and so will you."

When you were quite small--maybe only 4 or 5, I remember you picking out the words 'change is good' on a banner in our local gas station. They were advertising a special on oil changes. You considered it, thinking hard for a few minutes, and then turned to me with your eyes owl large in your thick glasses and said, "No mommy, they lie. Change isn't good."

And you were right. In those years, you struggled to negociate the confusing social world of school, when you needed your daily schedule to be completely predictable.

Once in preschool, you had a panic attack because your father had cut your sandwich into triangles instead of squares. This summer, you traveled through Greece for two weeks with a school group and learned to love gyros and eat eggplant.

I have watched you learn to navigate a landscape of endless change with humor and with grace.

I could stand here and list your accomplishments; academic excellence and straight honor roll grades, being cast as the lead in the school play, a brown belt in karate; but these things tell us what you have done, not who you are.

I am proud of the man you are becoming. You blend your father's gentleness with my curiosity into a personality that is uniquely your own. You are a mensch--even when--or especially when I ask you to do something you don't want to do, like babysit your younger brother instead of having a sleepover with your friends. And speaking of your brother, you are kind to him when you don't think anybody's looking. But don't worry, I'll keep that our little secret.

When it came time to designate a charity for a portion of your gifts, you didn't hesitate to name [local dog charity], the fostering organization we adopted [our dog] through. I am proud of the way you are passionate about ecology, conservation, and animal welfare. You may not remember this, but during recess in elementary school, you used to get the other kids to pick up trash on the playground and lecture them about recycling.

You are funny, with a wonderful sense of the absurd. Because you are a teenager, we give you one free "I hate you, mom" each day. You can say it once, no questions asked, and for the most part, you don't. At the airport, after you had been overseas for 2 weeks and after hugs and pictures, you made sure to tell us you had fourteen of them saved up.

It's been two months and you still haven't used them. But maybe I shouldn't have reminded you!

"Things change and so will you."

There was a time when I wanted to hold the world steady--keep things from changing, protect you from any danger or harm. It's a mother thing and it didn't work. You still needed stitches on your face before your second birthday. Shortly after I started letting you walk on your own to school, you were stung by dozens of wasps. I couldn't help it--the poet in me saw that as a metaphor, but it was just circumstance, bad luck. Pragmatic even at age eight, you kept walking that same route to and from school.

You have been my teacher. You have taught me patience and the power of being present. That we have our own paths and we travel those paths at our own pace. That the things we worry most about are not in our power to change. That laughing at the dinner table is the best medicine money can't buy.

The future is an unknown country that we parents are especially good at populating with monsters. Yes, there will be quicksand and riptides; there will be lions, tigers, and bears, stitches, trips to the ER, wasp stings, and heartache. But there will also be unimagined beauty and the joy of discovering fellow travelers.

"Things change and so will you."

I will hold this moment in my mind, not to capture you, but to remember this point on your journey, knowing your trajectory will take you far beyond my own limited imaginings. And when I feel the pang of that familiar worry, I remind myself that you already have the map you need; it is written in your heart.

Congratulations, P. We are very proud of you.

Friday, September 01, 2006

Another: Marcus Fiesel, age 3


this one a foster child autistic three
years old feces smeared on the wall
a handful the mother told police
there now he's your problem
so they placed him
with a married couple that's how
the system is supposed to work child
protection child endangerment child
neglect child dead from heat stroke
they went to a family reunion their idea
of respite care a blanket and packing
tape and stuff him in a closet my god
these are foster parents someone approved
of them someone said yes
the boy will be safer there nowhere
in the foster manual does it describe
how to call in a false missing person
report or give directions to burn a tiny
corpse of what used to be someone
for the morally outraged to editorialize
to call for sweeping change oversight
review reform bail is set at over
a million dollars each they both plead
not guilty no matter what
these two will never
foster again the verdict
cannot ressurect innocence and god forgive us
we will actively forget
until its time to eulogize another

ljcohen, 2006

another autistic child murdered

Thursday, August 24, 2006

The traveler returns

We picked our eldest up from the airport yesterday after a 2 week whirlwind tour of Greece. He seems at least an inch taller, his voice is a pitch deeper, and he carries himself with more confidence.

This child with AS who at age 5 had such violent tantrums we were afraid he would inadvertantly hurt himself or one of us. The boy who ended up curled in the fetal position in the corner of the dentist's office when the hygienist tried to brush his teeth with a different flavored toothpaste. This sensitive child who used to run from his classroom and out of the school when he was overwhelmed by the sensory and emotional demands of a group of 20 other 2nd graders.

"Things change and so will you."

The quote I vividly remember from a children's book called "Seeing Eye Willie" by Dale Gottlieb.

At just shy of thirteen and standing 5'6" tall, with broad shoulders and feet far larger than his dad's, P. is a far cry from the wide-eyed kindergartener I took to school for his first day 8 years ago.

Although he had been excited about the trip to Greece all year, when the departure date got closer, I know he was nervous about handling the social demands of two weeks in close quarters with a group of a dozen 7th and 8th graders, some of whom he'd had social 'bumps' with.

And this was the first time he'd been away from home (with the exception of visits to grandparents, which is a different ball game). Traveling so far in space and time (Greece is 7 hours ahead of EST) meant that I was not easily available for him as a touchstone.

The day I packed his suitcase, I imagined folding myself in it between his shirts and shoes.

He managed his money, dealt with different hotels every night and only lost a hat. (Well, he left a pair of sneakers in the hotel at Delphi, but the group returned there for a night on the way back to Athens and they had the sneakers for him.)

And along the way, he learned that other kids felt homesick and vulnerable. That the social dynamics were fluid and the who's in/who's out also affected his companions. That other kids had their own issues. That he could call me anytime of the day or night and I would tell him that I loved him. (He did and I did.) That he had the resources to problem solve without me.

Am I proud of my son?

You bet.

He is growing into a fine young man with a loving heart and a good head on his shoulders.

"Things change and so will you."

Tuesday, August 08, 2006

Busy, busy, busy. . .

Summer is a paradoxical time. The days stretch out like a languid cat and in the morning it seems as if there is time for anything before nightfall. And then we try to cram in several days worth of experiences in the finite hours between dawn and dusk.

For the first time in my years of parenting, our children are traveling for an extended period without us. Our 10 year old, E. left a week and a half ago for 4 weeks in an RV trip out West with his best friend's family. So far, he has hiked and horseback ridden in Yellowstone park, soaked in mineral springs in the Grand Tetons, and yesterday did a river rafting trip on the Colorado River.

My nearly 13 year old, P., is flying to Greece for a two week trip organized by his 7th grade social studies teacher. If, several years ago, you had asked me whether this would be possible, I would have said no.

Those were the years when P. would spin into intense tantrums if he missed an episode of a favorite TV show, or if we imposed a change in his treasured routines. When a substitute teacher would send him into a tailspin for a week at school. When stress in the classroom would send P running out of the school building in a panic. When I needed to hover at every social interaction and run interference with our extended family at the few family events we couldn't say no to.

So much has changed in 8 short years. He is turning into a young man right before my eyes with more resources and more confidence that I had dared believe when he was 5 and newly diagnosed.

The trip that was months away, the Bar Mitzvah that was years away, have arrived with frightening speed on our event horizen. 8th grade looms and then one giant step to Highschool a year later.

But for now, I have 2 days before my precious boy flies overseas, passport and euros in hand for a two week trip that will also fly by.

Thursday, July 20, 2006

Impressions of the ASA conference

It's taken me a week to be able to pull my thoughts together about my experience speaking at the ASA conference in Providence, RI. And it is likely these observations will only be my narrow window on the conference, as I only attended for a small part of thursday and saturday--the days my two panels were scheduled.

I have already blogged about my frustrations regarding speakers *paying* to speak, so I won't say anything more about that here.

I took part in two panels, one about being a parent 'on the spectrum', the other a writer's panel. (In my other life, I'm a poet and aspiring novelist)

The panels were modestly attended; the family one more than the writer's panel. The audiences were respectful and attentive.

I had mixed feelings about the conference itself. While I applaud the ASA for including individuals with Autism in its governance, I felt as if the organization has a split personality.

I spent some time walking around the exhibitor's area and was dismayed to see so many booths focused on quasi-scientific autism 'cures' and 'treatments'. Supplements, therapies, and hyperbaric chambers, oh my.

There was a booth by either "CAN" or "DAN" (sorry, walked past it so quickly, I didn't register which acronym it was). If the ASA is taking money from these organizations, then there is at least the tacit agreement that autism is something that needs to be 'cured' or 'defeated'.

I have very mixed feelings about the hordes of bio-medical treatments that separate desperate parents from hard-earned money for questionable scientific proof.

I want to see barriers to function, understsanding, and employement 'defeated', ignorance 'cured'.

I don't think the ASA can adequately represent Autistic voices and Autistic lives until it resolves this conflict.

Thursday, July 13, 2006

On my way to ASA

I have to admit to a large portion of ambivalence about attending and speaking at this conference. I have visions of security guards accosting me for proof of my "aspie" credentials, or parents booing me for not following a gluten and casein-free diet for my family.

Maybe I'm an outlier, but the truth is, my family life doesn't seem so out of the ordinary. My boys fight like typical siblings. I spent hours in the car ferrying them to karate, ceramics, play rehearsal, hebrew school. We have homework wars. They constantly nag me about getting cable TV and pushing back their bedtimes.

They are happy and even when I have to make unpopular decisions (no, you cannot see that PG-13 movie, or no, thet video game is too violent) they know they are loved, accepted, cherished for who they are. They know I will be their staunchest advocate *and* the one who pushes them to do their best.

There is no one who knows them better than I do. Both because I am their mother and have watched them grow and thrive from their births, and because I can see the world through their eyes. I remember the acute pain and confusion of the social world of upper elementary and junior high school. I know the feeling of being just enough out of phase with the world to make life almost unbearable. I also understand the joys of an all-consuming interest.

I try not to roll my eyes at yet another conversation about manga and anime, remembering my obsession with all things Star Wars in my pre-teen and early teen years. Our newspaper ran a cartoon serial of the original movie and I dutifully clipped the comic strip from the paper every day and taped it up behind my closet door. It was especially important for me to get to the paper after we had returned from vacation so I could collect the whole weeks' strips before the papers were thrown out.

When P was small, our lives revolved around getting home in time to see "Thomas the Tank Engine". Thank goodness for VCRs with timers.

Maybe this would have seemed odd to me if I hadn't had my clear memories of needing sameness and predictability in my early life. Even before "AS" vocabulary entered our lives, we knew that P thrived on routine. Other babies could miss a nap time. Mine could not. No exceptions. Sorry.

This is the life I have. There is no second guessing or wishing it away. Is there sadness? Sometimes. The pain of watching P's friends abandon him in 4th and 5th grade re-awakened feelings of anziety and depression I though I had moved past. There are many times when P and I are at loggerheads--when our rigidity clashes head on and I turn into 'harpy-mom'. Not something I'm proud of. I know I need more time and personal space than most other moms. If I get overloaded, I can't parent effectively. My partner/spouse/main man provides me balance. His love and acceptance makes it easier to get through the hard days.

This is the life I have and this is the life I love.

Because I have accepted my boys, I have opened the door to accepting myself.

Warts and all.

(Figurative warts, not literal ones.)

Saturday, July 01, 2006

Points of agreement?

I have been following autism blogs for some time now, and I'm terribly disheartened by the degree of hostility and deep devisions between constituencies.

It seems as if there are definite 'armed camps'. Cure/not cure, NTs/ACs, High functioning/low functioning. I'm sure there are more dichotomies I could come up with, but you get the idea.

Here's the strange thing--many of us live in *more* than one 'camp', or constituency. I'm a parent of a child on the spectrum. I'm also an "aspie" myself. I'm also a medical professional. (disclaimer--I don't work with autism--I'm a physical therapist) So at different times, I may wear different 'hats'.

But regardless of what role I take at any given time, here's what I believe:

"Function" is a matter of perspective. Someone using a wheelchair in an Escher house would likely be 'low functioning'. There is no clear line between what 'high' and 'low' functioning *is* in the world of the autism spectrum. And even within the same individual, level of function may change depending on outside stressors, physical health, and coping resources.

If 'cure' means obliteration of what makes my brain function in the way it does, no thank you. What I want is to decrease barriers to function and improve coping ability in an often chaotic world.

What is 'disabling' is not necessarily the *autism* but the host of secondary impairments related to fitting a round peg in a square hole.

In fact, I wish we could move the debate along the lines of the World Health Organization's terminology:

Impairment--any loss or abnormality of psychological, physiological, or anatomical structure or function.

Disability--any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being.

Handicap--a disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents that individual from fullfilling a role that is normal, depending on age, sex, social and cultural factors.

I'm all for decreasing disability and helping to mitigate impairments. Anxiety? Sure--take it. Depression--nope, don't want any. Face-blindness and difficulty reading non-verbal cues? Love to learn better ways of getting around that.

My autistic-thinking brain? Don't you dare mess with that. My ability to see patterns and hyperfocus is *not* disabling in my life. My sensory processing can get in the way at the grocery store, but my poetry is richer because of it. Special interests? Well, in my world, it's a good thing for a physical therapist to be intensely preoccupied with anatomy and kinesiology.

So what *can* we all agree on?

Maybe for starters, that decreasing disability by minimizing secondary impairments is a good thing. I can stand behind that and not feel as if my self-hood is being devalued.

Perhaps individuals would be willing to ask a different question.

Instead of:
"Will this treatment/medication/therapy/supplement *cure* autism?"

"Will this treatment/medication/therapy/supplement help improve my/my loved one's quality of life?"

Yeah--that works for me. What about you?

Friday, June 30, 2006

"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.

Monday, June 19, 2006

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.

Thursday, June 15, 2006

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?

Friday, June 09, 2006

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.

Thursday, June 01, 2006

"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."

Friday, May 26, 2006

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

Wednesday, May 24, 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.

Tuesday, May 09, 2006


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


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.

Tuesday, May 02, 2006

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.

Tuesday, April 04, 2006

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*.

Sunday, March 12, 2006

"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:

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,


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

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

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."

Thursday, February 16, 2006

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?

Monday, February 06, 2006

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.

Sunday, February 05, 2006

"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.

Tuesday, January 31, 2006

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.

Friday, January 13, 2006

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.


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.