The Danger of Anecdotal Experience

Last night, I happened to be awake late enough to watch the news show, Nightline. One segment of the program highlighted a program that takes autistic individuals, primarily children, surfing.

What I found bizarre, is that this surfing program, no matter how well intentioned, was developed after one father (a professional surfer) found that taking his autistic son surfing, helped calm the boy down. Now this man and his wife have devoted their lives to running an all-volunteer assisted surfing program. All on the strength of his belief and personal experience.

In the segment, Nightline showed screaming children in life jackets being carried out into the waves by volunteers. The parents stood on the shore and watched through binoculars. Although they reported the children involved were all happy and relaxed after their surfing experiences, the one child they did follow closely through the segment, when asked if he would go out surfing again, threw himself in his mother's arms and begged to be taken back to their hotel.

The program director appears to believe passionately in the power of the surf to calm autistic children. I can't fault his intentions. Finding activities that help regulate anxiety and increase calm is a good thing. Is surfing the answer? A more fair question might be: is surfing *an* answer? Probably for *some* individuals. What I fault is that this is another example of the 'it worked for my child, lets do it with everyone' mentality.

Anecdotal experience is not scientific evidence.

And I worry about a belief that the outcome justifies the process.

From an autistic child's perspective, I could imagine how frightening the morning must have been. A crowded, unfamiliar environment, an uncomfortable life vest, the potential sensory assault of beach sand, the sound of the waves, physical contact by strangers, forced separation from parents/caregivers, immersion in roiling water.

Does the fact that some of the children were calm and relaxed when it was over mean it was the right thing to do?

Looking forward to Autreat

I've blogged about Autreat before. A retreat, once a year, a week free from the endless pressures to conform in the neurotypical world. I was worried that we might not be able to attend this year, as the school year ends quite close to the dates of Autreat. If we'd had more than 1 or 2 snowdays, the Autreat dates would have been while school was still in session.

(There weren't snow days, and thus no overlap)

The other issue was a possible move.

Now that it's not going to happen, I can talk about it and process how it affected me. My husband has been having a difficult time of it in his job and was offered a position that would have entailed a relocation for the family.

In terms of sheer miles, it wasn't that far. Just a few hours from where we live now, but in terms of life change, a huge rift.

Maybe that sort of change is hard for everyone. Certainly neurotypical teenagers resent having to move in their high school years and it is difficult to get used to new neighborhoods, schools, routines. For me, it would have been hard on many levels at once.

I would leave behind comfort with geographic place. I know my way around here. That might not seem like a big deal, but it took me years to feel secure driving in my town, and navigating the highways here. My sense of direction is very poor and I used to get panic attacks when I didn't know where I was.

I would leave behind several really supportive friends. Friends who understand my oddities and appreciate me for them. Friends who only ask for what I can readily give and who have found that without pressure, I can give quite a lot.

I would leave behind a private practice in physical therapy that I have taken years to build, knowing that I would not have the time or personal resources to start all over again.

I would leave behind the familiarity of a school district, that, for the most part, has served my boys well.

I would have to deal with managing my own depression and stress while being the conduit for my boys to manage theirs.

I would have to learn a new school system without the support and advocacy of others I know who have worked with that system before.

I would have to learn how to navigate, both in the literal sense and in the metaphorical sense, a new place, with new people, and new expectations.

All while my husband was settling in to a new work community in a demanding job, that no matter what the employer assured us, was going to entail long hours away from home.

We have lived in the same place for nearly 15 years. That *is* my children's lifetime. A long time, even for a grown up.

I can't say I'm sorry my husband turned down this opportunity. Even though it would have entailed more money and (perhaps) less work stress for him. I still worry about his physical and emotional health, working the way he does, and I hope that he is able to find a way to manage it. But I think even her realized that the net result of this move would have been much more stress, rather than less.

So we stay.

In our lovely home.

In this familiar neighborhood.

And we will be at Autreat this year, enjoying the familiar comfort of its support.

Today's Post: Part 2--IEP redux

This morning was my 8th grader's IEP meeting/3 year review. As part of that process, I requested that his psychological testing be repeated. There were no surprises. A 65 point discrepancy between his verbal comprehension and his processing speed subscores. (>99th percental vs 16th percentile).

It's no wonder that he excels at tasks in which he can use his verbal/language abilities and struggles with more abstract tasks (like math tests) that are timed or induce stress to the mix.

The split amongst his subscores is even more pronounced than it was in his prior testing of 5th grade. So as his peers have matured and improved in their processing speed, he has not.

I think the test results and they way they were explained by the psychologist even startled some of my son's current teachers. P is so good at covering for his difficulties, that it's sometimes hard for me to see his performance accurately.

I am quite concerned about the math. Currently, he has provisions in his IEP to take untimed standardized tests, but there isn't any accommodation for his class-based math exams. And he's failed 2 exams. Amazing to realize he's still pulling a solid B average in this accelerated math class. When he has time to process, he seems to be able to understand and demonstrate his knowledge. But he is not successful with the same kinds of tasks on tests.

I can help him organize and plan for all of his other subjects. The math is beyond me. And it's not an issue a basic tutor is likely to be able to help him with. It seems to me that in a typical testing situation, he is unable to call on his own resources to overcome his cognitive/learning deficits. It's not exactly a math problem, nor is it a study habit's problem, but a problem of matching the testing to his cognitive abilities.

I think I will be meeting with the school and his math teacher to discuss testing accommodations.

Today's post, part 1: Thank you

I appreciate those of you who commented on the blog or via email about my last post. I am less stressed a week later, having had some process time.

Am I any more disposed to move? No. But my fight or flight response has damped down and I can work through the process without the sense of impending panic I felt in the past few weeks.

One of the reasons this problem has been so difficult to work through is that it concerns the future/wellbeing/success of the person I generally problem-solve with. Normally, my husband is the impartial and reasoned sounding board. This time, he's drowning in the same fears and anxieties as I am.

To his credit, he knows how difficult even the idea of moving is for me and he's arranged for me to spend a day in this town to get a sense of what I think of it before we talk further. I'm a kinesthetic processor--being there will do what internet research and brochures cannot.

I'll keep you posted.

My long absence

I'm sorry for my long absence from blogging here. First an update: my father's health is stabilized currently. I appreciate the notes and emails of support I received. The news is mixed--he won't need dialysis emergently, but he will likely need to start with it within a year. His kidneys have been slowly failing for many years (undiagnosed hypertension) and there's little they can do to halt the process. He is on a kidney sparing diet and off some medications that actively harm the kidney. And he's determined to stay as healthy as he can. In fact, he's doing better than the rest of us in adjusting.

I honestly thought I was holding it together--I even managed to juggle my work around my parents' medical needs and seemed to be doing fine. Then my husband got offered a job out of state. A terrific job. One that pays more money and will probably mean less work stress for him. It should be a no brainer, but I'm a wreck.

I've been in this house for 14 years. I feel safe here--physically and emotionally. I'm connected to the schools and they have been (for the most part) amazingly responsive to my childrens' needs. My boys are happy. They have friends and interests here. *There* is a big unknown. *There* is finding a new neighborhood, new schools, new friends. *There* is leaving the safety of *here.*

*Here* is everything I've ever wanted.

Except for the fact that my husband works close to 80 hours a week, with little control and little support. He cannot continue at this pace--it isn't healthy for him.

If we must move, my children have me to support them in the dislocation. But there's no one to support me in that way. I am anxious and frightened and my emotional first response is an automatic 'no'. I am working hard to stay in the moment and not give in to this blind panic about anything different.

It is so very hard.

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.

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.

Another: Marcus Fiesel, age 3

Another

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

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."

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.

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.

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.)

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?"

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

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

"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.