Two Poems - 2.

(Continued from previous post)

Over the last five years, I found that it is difficult to navigate a way for meaningful learning and growing, for a child who types.

This niche carving of a small, safe space consumes almost all my energy resources. 

On one hand there is the child with unique expressive ability, different neurology, social construct, sensorimotor mapping, motivations, and, good comprehension. On the other hand are standard educational systems clocked to practical recipes. 

M was tested by his schools- per requirements- through regular academic tests and special tests. He scored well. 

The tests continue to give him a place in this world but they also show the smallness of our testing methods. 

Because to start with, we still don't medically understand autism, what causes it, what it really is! 

I wrote this in 2013 when M first started typing independently. That is, happily typing on an Ipad-keyboard, sitting a small distance way from me. It was a milestone in my world-view. 

This poem somewhat reflects my conflict. 

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the secret of dark matter

are leaves green?     is the universe big?

everyone dies, one way or the other?

happiness makes you smile?

songbirds sing?    is he intelligent?

crystal clear, but not apparent to some  

For we judge from what we know    we casually

invalidate the life of another by a  

glance or sound not considering

the arduous path he walked to come here

For a sip of table water   

survival is a daily struggle

When a body is held by autism     a consistent signal-

I am here, I exist, I understand, let me in..

Above the distracting drums of bodily chaos 

is like a revelation on spiral stairs of proofs

but we mostly ask-    can we test?   

it is we who are palaced in boxes of thoughts and doings

we live by the fine satin ribbons tying us up   this is a

designer bow- two twists, 5 loops    so pretty    no ugly    even as our

sight deftly eludes the plain self-sculpturing truth well within

Our boxtrains    chugging chugging on meter gauges    

setting busy systems and metrics for measuring and pouring out

intelligence    so we can pack, box, label and ship it by ground 
to a known place for other bored systems to unpack and assort

our intellect can take only that much, anything more

is taxing to our neural nets    which we tightened nook and neuron,

patient wrench in hand    school and school and school   so we know only

how to grade others to our inflexibilities    Yes he may

Take one sip of life    no he cannot, go to quadrant B, table 3    parents can look

through a window for 3.57 minutes on alternate fridays

can we bottle birdsong?    taste green from a spring leaf?

not seek meaningfulness because we’ll all die anyway?

yesterday you typed, you typed independently.     fully.

met a metric for validation from set systems    so my weak heart

betrays me; it has joy, it is calm    I went to the same life-schools you see

I can’t come out of my box even after opening up box after

box after box    for every x of loosened ribbon knots, y new

ones appear    and loosening one somehow tightens another

anyway I lean back in my box because now I feel more assured

Of standing room for you at the table of the living    I also feel awkward..

I don’t understand. Like someone after figuring out the secret of dark matter

is waiting on a busy, dusty roadside    nervous chalk in hand   

to tell someone     tell anyone 
who stops -   I can write the proof..      independently.      fully.

April 2013

Two Poems - 1.

Today is the last day of the month of Autism Awareness. 

About 50% of people with Autism cannot speak or speak minimally or cannot speak fully functionally. Some communicate with devices that speak for them. A small population uses typing or a board. Each device, whether high-tech or low-tech, is a huge learning effort. Because the neurology of the person using the device is of autism, which has many unknowns.

My son, M, first started typing in early spring of 2011. An accidental happening. I wasn't aware of all the communication techniques being used already. I had read that some adult stroke victims while healing can type before they can talk again. There was also insight on how they view the world. I put two and five together and one day, when we were on the sofa, I said 'mom' and placed a keyboard in front of him. I was intrigued. 

It took a few weeks before we tried simple words. 3 letter words, 2 letter words, 4 letter words.. It was an extremely tiring effort for him. Then 2 words, 3 words, 1 word answers to questions- What's up there? What is this? What is the color of the sky? 5 minutes at a time. 2-4 times a day. Soon, I had to leave the study for I could not hold myself after the session. Shaking, delighted, shocked, straining to comprehend and metabolize the unfolding reality, walking around to compose myself. 

I would ask trick questions. I would explore for self-consistency. 

A month or two later, one day we tried a very small story. I asked him to tell me a story from a video he loved to watch. He typed with a focused face, all his life force engaged in the effort of transferring a scene, an idea, into a medium of words. A new way. Each tap of the finger an act of hesitant grace. He typed a few words, searching, pausing, struggling, concentrating, being direct, being repetitive. 

One word he typed was "son". I slowly figured from the context the word was, likely an interesting substitute for "prince". Do you mean prince? Also, he started the story from the middle, the peak of conflict! It is his unique trait, I found later, again and again. He gets to the main point right away. And tells from there.

This poem is how I felt when M typed this first story. He was 8. 

*****


Summer is Coming!

Today was cloudy, cold and windy.

Last night, the rain tapped on the windows -

Can I come in      no, stay outside

It is cold here      no, if you come we will all get wet

Late-noon we were looking out our study window

branches and leaves plumped with moisture, sinking down down

Will you break and fall     no we won't

Peach buds do not have white fungus anymore

at wits-end I almost asked the gardener to trim down the tree

I wavered and before I knew the nubs appeared and that was that

Did you hear my thoughts?     no, I didn't

Two days ago it was warm, even hot -

screeching squirrels were chasing each other

Do you have to be so intense?     yes, we do

Birds singing, hopping, nesting

Are you tired, I asked one bird resting flat on the ground,

legs tucked in     it skittered away

Ants got into the lid of the honey jar I left outside

Some saw me and fled. Are you trapped, I asked of others     yes we are

wait, I will get you out of there- I held a paper towel for them to launch into

Life is crawling out of every crevice to meet the sun

in this festive see-saw between spring and summer

Honeybees, bumblebees, hesitant butterflies, pregnant ladybugs

arrived for our afternoon yard play

What are you doing today in the cold?     We are lying low

It is ten o’clock now at night and my son isn't sleeping

he’s coming out of his room on every pretext

Do you want to sleep     no

No worries, I am not fatigued. For today he typed a story,

his first. 'Snow White' it was and started-

there was a girl   she ate an apple 

What happened then?     she fell down

Thoughts weaving into garlands with language blooms

these eight years of low-words autism, watching, waiting 

waiting for a string. Tomorrow when I'll ask him to continue the story

I'll be finding more blooms- he came, she heard him, there was a son,

each flower beaming with the beauty of a shy universe

Strung on so exquisite a string, it is almost invisible

I have to close my eyes to see it

Something in the path we're walking through

is giving the tastiest crumbs, never in a straight line

I pick each up like a gem that never was

I can't wait for summer

for the choice will be warm or warm

Will you come closer, faster? I ask the Sun

    No, silly mama. I'll stay my course and you do the same

(April 2011)

*****