Turning Over

I hope you all had lovely winter holidays and turns into the new year: Happy 2014! Joey’s been having a bit of a rough time, with all the disruptions to his routine (school starts back up on Monday, and I don’t know whether he or I will be happier), but harder than that has been the fact that he is more and more obviously different from other kids his age; he stands out quite a bit, now. I know that that gap is likely to widen. We’ve had professionals tell me (and I’ve read in more than one book) that some autistic kids are totally indistinguishable from their peers by age six, so don’t lose hope! But that doesn’t seem like where Pete is headed, and I sort of wish that people would stop raising the possibility. If it does happen, I’ll be glad. But if it isn’t going to happen, I don’t want to have my hopes up, you know?

I know other mothers who have children with autism; one woman in particular has a son six months younger than Joey, who seems both more obvious affected by autism and brighter than Joey. It is hard for her to see how unable he is to reach out—but it’s sometimes a little hard for me to see how intelligent he obviously is. Once he starts getting therapy, it seems likely that he will improve enormously. And Joey, too, has improved enormously—and he still has autism. When the school district tested him, they also did an IQ test, and the results were problematic. On the one hand, the IQ score may not have been accurate because of difficulties in taking the test that affect Joey without diminishing his intelligence; on the other hand, the results suggest that Joey will not be living on his own or going to college as an adult. Nothing has been ruled out for him, of course: he’s only three, for God’s sake. But—so I read a couple of Temple Grandin books. And I recommend that to other people, for sure; she talks in detail about her experience of autism. But it becomes clear that she is only able to really explain her autism. Not that I should have expected anything else. But Dr. Grandin talks a great deal about finding an autistic person’s special gifts, and while I know that Joey has gifts, they so far do not appear to be the kind with which Dr. Grandin is most concerned.

I’m grateful for Joey—I hope that always comes across. I’m the mother of a special needs preschooler, so there are of course times when I have a harder time feeling that gratitude keenly; recently, Joey screaming in my face has been especially hard for me to accept graciously. He isn’t doing it to bother me—it doesn’t have anything to do with me—but it’s just wearing on me.

On the other hand, Joey has learned to correctly answer the question “What’s your name?” Small, great things.

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7 thoughts on “Turning Over

  1. Small, great, things indeed, and your gratitude comes across loud and clear. (You switched out of Joey’s blog name up there, btw, I think.) I hope his return to school goes smoothly enough, that you find some ways to refill your own energy.

    It’s so hard to be patient–the older Joey gets, the more information you’ll have, the more practice you’ll have, and the more he will develop. In the moment, tests and behaviors can be such an energy depleter. (which is really stating the obvious, I know! But mostly trying to say I’m reading, nodding, listening.)

  2. Sometimes, Holland just sucks. And you don’t always have to be grateful to have landed there.

    c1987 by Emily Perl Kingsley. All rights reserved

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

  3. That’s awesome that Joey can tell you his name! It would be hard to toggle between the nitty gritty present and hopeful future-oriented discussions.

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