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.