The Gift and Weight of Autism (#180)

(With a holiday wish at the end.)

In Greek mythology, Atlas bears the weight of the world–the earth and the heavens–on his back. Atlas is a Titan, a son of Gaia (Earth) and Uranos (Heaven–though some accounts say of Poseidon, Ocean); his carrying the world is his punishment for leading a revolt against the Olympian gods (led by Zeus). Atlas is only once given a reprieve when the hero Hercules briefly holds up the world, in exchange for Atlas bringing him the golden apples from the Garden of the Hesperides.
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The British writer Jeanette Winterson retells this myth in her novel Weight. In her modernization, Atlas, after eons of loneliness, gets a friend, Laika, a dog sent into space by the Russians. And one day, as Laika grasps his giant thumb, he falls down flat, the world rolls off his back, and he walks away.

That’s how Winterson retells the myth, and this is how I’ll tell it to all of you.

For all of us parents, our children are our cosmos and we bear their weight upon our backs, day in and day out, not as punishment but as our pride and as our most precious gift. Charlie is Jim’s and my earth and heaven, our world. When someone comes who is able (however briefly) to take our sweet weight from our shoulders they are heroes, heroines, indeed. But at the end of the day, we kneel back down and accept that weight again.

At the end of every day for the past two-plus years, Jim has been teaching Charlie to say the Lord’s Prayer, one word at a time: “Say our.” “Are.” “Father.” “Fah’err.” “Who.” “Hoo.” “Art.” “Artd.” “Inn hea-ven.” “Innevvenn.”

“In hea-vinn,” said Charlie tonight during a mass for “different-abled” children and their families at a church near where Jim spent his teenage years.


Families sat loosely arrayed in the front third of the church. Charlie sat down nervously and yowled when a child in the pew before us thunked down the kneeler. No heads turned; the priest had begun the mass saying “this is not my house, this is God’s house,” and emphasized that this was a safe space, a welcoming space, in which our children could speak out or get up as they might need to. Charlie sat and stood as we gently directed and, with Jim smiling encouragement, spoke the prayer the two of them had practised over so many nights.

Santa made a special appearance at the end and Charlie was eager to accept a candy cane and to stand by Santa and touch his fleecy coat.
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The priest called us especially to pray for “the parents” and for our children; he reminded us that “you” (i.e., Charlie) must be thankful for those who are your caretakers and who are with you every day. I looked at the grey-haired woman with her greying son in suspenders, who had been sure to get a picture with Santa.

Friends, near and far and in all places around the atlas, thank you for the support and good will you have brought to Charlie, to Jim and to me, in bearing the burdens that autism brings. No weight is too great when we know that you are out there and with us–what a gift. From our household in Autismland to yours, we wish you Merry Christmas and the happiest of holidays. We wish for peace on earth and joy to the world, and especially to the world we bear so lovingly upon our backs.

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Comments
4 Responses to “The Gift and Weight of Autism (#180)”
  1. Happy holidays to you and your guys, Kristina! Yours was the first blog I found when India was first diagnosed and I was so very very sad. I hope you know how important you’ve been in helping me with MY recovery.

    Salome

  2. Lisa says:

    Kristina,

    Though I don’t share your religious traditions, I was very moved by this blog entry. I remember the triumph of the first time our family was able to stay through an entire kid’s service at our temple. Now, that same boy who got overwhelmed by a 30 minute kid-friendly service will be preparing for his Bar Mitzvah soon. It’s not a linear progression, but each success, each triumph helps to build the next.

    The story of atlas and your retelling of it also resonates with me and my experience of parenting. May you and your family have the happiest of holidays and a joyous new year.

    best regards,
    Lisa
    (from the Case Western conference)

  3. yes, we are holding our children on our backs; they are our worlds, aren’t they? and we, theirs. such a beautiful entry, kristina.

    merry christmas to your whold household. and many blessing for you, jim, and especially, charlie, for this new year.

  4. Shawn says:

    This is a very moving description on the challenge and joy of being a parent of child with special needs.

    My family shares a similar religous tradition and attend a children’s mass every Christmas eve. Behavior of all children is pretty well accepted. Last year, when the children were called to the altar, my youngest climbed under the poinsettias. This year it was very loud, but poorly timed, laughter to a funny story the priest told. He manages to put a smile on our pastor’s face every year!

    Merry Christmas!

    Shawn

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