When I gave birth to my daughter, I was 34 years old. I remember quite clearly watching the nurses weigh and measure her. I remember how loudly she was yelling when they bathed and swaddled her. I remember how calm and quiet she became when they put her into my arms for the first time, because she could once again hear the familiar sound of my heart.
And I remember thinking, “She’s brand new. We’re at the beginning. When she’s 18 and ready to leave home, I’ll be 52. I’ll be so old! That’s forever away.”
And this year, I’m 52, and my daughter is talking about going to California after she graduates high school.
Please be assured that this post is not another meditation on how fast the time goes, or how brief it all is, or how hard it is to let go, even though all of those things are true.
This post is about reaching a crossroads, about making a commitment, about finding the strength to face what comes. It’s about doing all the same things I did on that day that my daughter was born, except that now I do them in celebration of my own birth and my own life.
It used to be that I hated thinking about my birth. It reminded me of my parents. It wove me back into the fabric of who they were, because I had to remember who gave me my body, my eyes, my face, my DNA, my life.
But now, suddenly, I want to celebrate by giving myself the only gift worth having: the gift of myself.
Yeah, I know that sounds hokey, but I am not in a hokey mood. Far from it. I’m not talking about a kind of New Age “love and embrace the special soul that you are” moment. I’m not talking about a kind of religious “I, too, am a child of God” moment. And I’m definitely not talking about a psychotherapeutic “I am lovable and worthy of love” moment.
No, I’m talking about something much more fierce and powerful than that. I am making a commitment to take myself back. Here is my declaration of intention, toward which I will strive with all of my ability:
I will no longer do anything that hurts my body, whether other people understand or not. If speaking hurts, I will not speak. If hearing hurts, I will not hear. If being touched is beyond my ability to tolerate, I will not be touched.
I will not attempt to shoehorn myself into some model of non-autistic consistency, in which if I can speak sometimes, I must speak always, and if I can hear sometimes, I must listen always, and if I can be touched sometimes, I must accept touch always. Those days are done.
Sometimes, I will speak and I will listen with my ears, only because sometimes, in specific situations, with specific people, at specific moments, when I’m calm and rested, and a million other factors that I can’t define come into play, everything comes together and it doesn’t hurt. I can’t always predict those moments, but I will recognize them when they arrive, I will choose to engage them with integrity, and I will not be pressured into doing otherwise, by anyone.
I will protect my health by communicating with others in a way that works for me, even if it takes time and other people would like me to go faster. When doing business out in the world—at the grocery store, at the bank, at a tag sale, anywhere—I will use my iPod Touch and any other appropriate assistive technology at my disposal.
I will no longer be a victim, living in fear, apologizing for who I am, and meekly asking other people to accept me.
I will live with all the fierceness and fighting spirit I’ve had from the day of my birth, and I will not turn them over to anyone.
I will insist upon my right to be treated as a complete human being, in all times and in all places, and I will not back down.
© 2010 by Rachel Cohen-Rottenberg
Happy birthday to your daughter and happy birthday to you! Good on you for deciding to do things your way. I’m always slightly worried when the point of my son’s therapy seems to be to hide his autism, and teach to behave in ways that are less noticeable. For instance, he’s supposed to repress his habit of making ‘weird noises’, something that he clearly enjoys doing just as much as he enjoys singing to himself and that is only ‘disruptive’ in the sense that most people don’t do it. I get that he’s got to learn and function in the world such as it is, and that it means he must be educated (he’s 8 and beginning to read, only just) and that school is easier if you conform, but still, I’m uncomfortable with it. So I wish you every success in finally living your life on your own terms. I reckon that after raising your daughter for 18 years, you deserve it!
Great steps Rachel though the pedantic person within me compels me to say that sometimes the only way you can discover things is via a little pain. It’s perhaps better to commit to pain on your own terms rather than no pain at all.
good news to another “alien” in the world.
i think i’ll stop being ashamed. (it’s either that, or build a space ship–and i’m not a techie at all.)
You go girl!
perhaps i’ll feel able to make a similar declaration soon, but for now, i’m relieved to have an example from someone to whom i can actually relate.
sandrine, i’m glad to hear that you’re also a little uncomfortable with the idea of that your son’s therapy is to train him to hide. i know i struggle every day that i’m out of the house, making countless large and small decisions about whether to ‘show’ or not, how much and for however long i can keep it up. everybody is going to have a different desire and ability to pass, but i can tell you that my ability has been patchy, sometimes convincing, and as i age (40 now), i find that either my desire to pass, or my ability to pass, (or both) has waned.
i suppose i would have less of an issue with ‘pass’ therapy if it was approached as a skill, to be used when necessary, but being careful not to touch delicate and unique sense of self, and expression. i hope it all works out well for your son and the newest, probably most aware generation of autistic kids, soon to be adults. there does seem to be a slowly increasingly awareness of human differences of all kinds, greater tolerance and appreciation, and a sense of it all being not such a big deal that there are people on the edge (i just don’t always enjoy being on the MARGINS). big thanks have to go the good old interweb, and the presence of blogs like this one. time they are changing.
thanks rachel.
Mazal tov!