Symbiosis (#212)

It was some years ago that Jim and I said to each other, “Charlie will be our <a title=”only child“–that it would just be the three of us, Charlie, Daddy, Mommy. More than a few parents have told me, “If we hadn’t had our other child already, we would not have had any children after”–After Autism. A dad told me, “We found out that she had autism on the same day that my wife found out she was expecting our second daughter.”
3ofus_1_1_1
We are a threesome, two parents, one autistic child. Every weekday morning the three of us ride four different modes of transportation–schoolbus, black car, train and subway—to get to our respective schools. Jim teaches farthest away north in the Bronx. I drive east over the Passaic and Hackensack Rivers to my job in Jersey City, while Charlie rides away to “the new school” in the New Jersey suburbs.

Though we spend the better part of our days apart in three different places, we still feel a <a title=”connection tighter than tight to each other. “He and I, we’re always on the same wavelength,” as Jim often says. Me, I joke that Charlie is like my Siamese twin, joined at more than the hip and closer than close.

Charlie woke up at 2am this morning howling and screaming and aiming for the wall. He went into our bed, back into his own, chattering cheerily and not sleeping until 6am. He has a sore by his mouth and has been pulling at his lips (dry from the cold), plus he had a bad stomach-ache this evening; had he not been feeling well and had a nightmare? Was he crying in strange terror at the sight of his post-surgery grandparents, pale under the hospital lights amid that hospital smell?


Little trooper that he is, Charlie got up just as the bus drove up, walked out the door, and sent me a smile as the aide slid the door shut. He had a thoroughly “off” day, knocking furniture around but getting back on track thanks to his teacher. He fell asleep for a half-hour at the very end of the day and was sitting at our front window eating an apple as I drove up, his babysitter nearby. Charlie put on his shoes and hat and vest and went out to the “b’ack car” and we drove to Target for some little photo albums to use for picture schedules of his daily routines around the house. Charlie paused to stroke a fluffy heart pillow and to poke at a DVD, then got a diet Sprite from the top row of the refrigerator case.

Charlie drank it slowly and seriously as he sat on the heater vent. I suggested an early shower after which he settled himself onto the big blue pillow in his ABA therapy room, the blue blanket wrapped around him, and fell asleep.

It was 6.30pm. My own head and mouth felt a bit swollen–or was I just imagining how Charlie was feeling?

Jim came home and told me how his parents had had a bad day after their <a title=”Monday knee surgery and how seeing them in hospital beds hooked up to IV’s and pain medication and other devices had rattled him. “And Charlie too–he’s like me, just raw and exposed,” said Jim. “He just really feels things, with no defenses.”

Closer than close, the three of us; tremors in one of our systems can make earthquakes in another’s. Because Charlie’s language has always been limited and delayed, the three of us are specialists in <a title=”reading non-verbal communication–the pull of a mouth, the twitch of an eyelid, the melody of a phrase–in each other.

Sun is classical Greek for “with” and biosis comes from the word for life, bios, and Jim and Charlie and I do function as one organism that does three things at once, that feels things altogether. Sun is also the sum in “sympathy”; pathos means feeling and that is what the three of us have done since 8.57pm on May 15, 1997, when Charlie was born and we became the threesome of today. One thinking-together, feeling-together, one little family <a title=”together and–as I said to myself as I pulled the blankets over Charlie shoulder’s and kissed his big head–thisclose.

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Comments
5 Responses to “Symbiosis (#212)”
  1. Eileen says:

    I hope Charlie is feeling better today. I know how one family member having an off day can effect the way the rest of the family is feeling. The three of you are so close. That is so wonderful. I hope Jim’s parents are feeling better soon too and have a quick recovery.

    Brian’s B-day is May 25….ten days after Charlie’s. I am sure the two of them would make great friends too.

  2. Mary-Ellen says:

    Hey, I’m one of those who found out MSHA on the same day I found out I was pregnant with my daughter! And I thought I was so unique…..lol.

    So it’s just the 4 of us….when I originally thought there’d be lots of us. Ahh, well.

    I know what you mean about everyone feeling the same way. If my son has a bad day, we all seem to have a bad day. If he has a good day, we all feel great.

    My son actually seems to be into reading me as well. When I am in a bad mood, he’ll always say “Are you happy Mama?”….it’s so weird, it’s like he knows right away. So much for Autistic kids not understanding social cues, right?

    Still enjoying your blog! You certainly are good at keeping it updated!

  3. Estee says:

    Wow, can I ever relate to this post. Adam is also my only child and every little move he makes, well, it goes without saying…you’ve said it.. and the sleep and chatter…I’m sure many of us can relate to that too. Adam does that a lot. Dukka Dukka Dukka and odadli, odali o…

    I hope Charlie has a better day!

    Estee

  4. Lisa says:

    “And Charlie too–he’s like me, just raw and exposed,” said Jim. “He just really feels things, with no defenses.”

    If any single concept describes to me life on the autistic spectrum, it is Jim’s wisdom here. My son and I share an exquisite (and often painful) sensitivity to the emotions around us. I have always described it as being the ‘canary in the coal mine’ for strong emotions.

    I hope you are all having a better day today.

    much love,
    Lisa

  5. susan says:

    This is my first visit to your blog. It is most excellent.
    I have been asked more than once, “If you had known then what you know now, would you still have had children?”
    What a question.
    I have twins on the spectrum, one HFA, one AS. I still wrestle with whether or not our family is complete.
    On the good days, “Maybe not!” I boldly declare, almost daring someone to try and talk me out of it.
    On the bad days, I swear I will never again be so flip as I was on the last good day and I wearliy and more resolutely than ever state, “I AM DONE!”
    At this point we work together fairly well. It would probably be pure hubris to add another cook to this alphabet soup mix, but today was a good day so I say,
    Maybe not.
    Anyway, thanks for the good reading. I’ll be back.
    Keep fighting the good fight.

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