telling
It's always a question. When do you tell? Because after a point, if you're very lucky and things get enough better, you don't have to say anything. But if you don't, if you keep mum, are you implicitly lying? Not about him, exactly, not about who he is now, because he now stands on his own two feet, a child with quirks and hesitations, but whole and relatively normal. You don't have to tell because of him, not anymore. But if it's part of your shared past, if it's the main reason you never had a second child – the first was too exhausting, with all the therapies and worries – if it's the reason, too, that you haven't embarked on a money-making career until recently, if it's the reason for so many of your choices, including the school he's in right now, because you learned it's the best for support. If all these things are true, then isn't the gap in information, the lack of revelation, a form of cover up about your life and who you are as a family and even as a person? And especially if the work you're doing now is partly a result of the struggles you've undergone with this child and his diagnosis, how can you say "I'm doing this, um, health-related, child-related writing work," and expect anyone to take that at face value and not want to know more? And if you tell more, if you're more specific about the work, then aren't you revealing a certain, shall we say, expertise in the field? A personal relationship with the subject?
And if you remain silent and someone finds out down the line, doesn’t it seem like you have something to hide? Like you consider it a dirty secret? Because you don’t. It's a source of great pride. And you want to say the truth: My son was autistic, he couldn't communicate the simplest desires, he was terrified of other children, terrified of swings and slides, terrified of the world. And now he's so very much better, so very much happier and more complete and more integrated as a person and in the world. And damn, but he did that and we did that together, and he's an extraordinary child.
So I told. Saturday night at the party, I told one person, then two. And the second was our landlord, though that's a funny word for him, because he's a nice guy and someone I like as a person, apart from the whole monetary relationship. And with my blessing, he told his wife. Who called me yesterday to ask for advice about another child she knows. And now I'm so very glad I told. Because I do have this particular expertise, this particular arena I know very well, and it feels false to hide it from people I'm getting to know. Feels like I'm hiding myself when I want to connect instead. And in truth, I can say, "Look at him, isn't he great?" And maybe in that way change a perception, if they have such, of a diagnosis so heavy and harsh, so irreparable and heartbreaking. But most of all, I can show my own self in this, I can be myself. And if they're scared and disturbed by this (and none of them have been), then they weren't going to be real friends anyway, were they?
Comments
Hi, I'm so glad you posted this. My neighbors have a lovely son, Matthew, who is 6 and autistic. He's an incredibly sweet boy, very affectionate and a pleasure to know - although I know that isn't always how he is at home. Reading your site has helped me understand the challenges he and his parents go through, and I hope helps me relate with them better. He truly is such a fantastic kid!
I hope you continue to find welcome in your new home, and many new friends.
Posted by: Jennifer in VA | December 19, 2005 02:31 PM
Tamar,
So glad to hear that things are working out well in your new town. As you know, we've been going through the same transitions.
Whenever you move to a new place, people want to know about you, about your family. Of course, one of the first questions that comes up is, "Where do your kids go to school." Since Zeke is in a separate special ed school that most people haven't heard of, the most common response is, "Where is that?" Which leads to the discussion of autism.
We are fortunate, like you, that our neighbors seem to be genuinely interested. As it turns out, there is another autistic boy in the neighborhood and quite a few people who have an autistic child somewhere in their family or a friends family. Seems to make them even more interested in learning more about autism from us.
Posted by: Brett | December 19, 2005 02:41 PM
You know, every time I tell someone about my bipolar book, the first question is always, "Huh. And how did you come to write that?" I always assume they're wondering about whether I'm bipolar, but still, it turns into a 'telling' moment, too, because I too feel that silence only perpetuates stigma. So I tell about my father, and that almost always leads to the "well, my so-and-so is bipolar too..." discussion. I have never, not once, run into anyone who turns away from me in disgust after being 'told,' and yet my breath catches every time I do it, out of fear and uncertainty.
Posted by: Tiny Coconut | December 19, 2005 03:58 PM
Every time my mom tells someone her age, it seems, she hears about how their grandchild is on the spectrum, or receiving services in some way -- or, more heartbreakingly, that this person's own child (in my generation) is/was in some way impaired and there just wasn't any help for it in the 70s. And no one talked about it. When she comes back to me with these stories, I think hard about the statistics and "autism epidemic" that my friends and I debate all the time, and wonder whether a good piece of it isn't really that we're all so much better about telling these days.
Telling is, I think, one of the greatest things we can do for our kids and the kids of our friends. Information is power. Knowledge leads to acceptance. And raising your children in an atmosphere where you can ask, and get answers, about development very early in the game, and address delays as soon as possible, beats the hell out of the old days.
Posted by: Sarah | December 19, 2005 11:43 PM
Your story is a very important one to tell. Since I have a 3 year old with Autism, I only hope to be telling a very similar story some day.
Posted by: Eileen | December 21, 2005 05:20 AM
I just posted about this very subject -- although not as eloquently.
I don't want to hide this truth about our lives from people but I am still navigating the when, who and how much part of telling.
Thanks for your writing!
Posted by: Christine | December 21, 2005 09:42 AM
As you know, I'm not shy at all about "telling"; we are out---see this website, for instance:
COSAC Fund: The Fisher Family
Thanks for saying what needs to get said.
Posted by: kchew | December 21, 2005 11:10 PM
I often thought about telling versus not telling, but I can't hold back. It's important for you, it's important for us, and above-all, I believe it is important for kids like my son.
Estee
http://joyofautism.blogspot.com
Posted by: Estee | January 23, 2006 02:31 PM