This is a little different– my amazing friend Maisha posted this to her Facebook feed a week or so ago, and I begged her to let me repost it. She’s actually the person who got me into blogging, way back in the Xanga days, so basically my entire writing career and everything you’ve seen here is her fault.
The name’s an inside joke, by the way. She doesn’t call herself that.
I’ve been meaning to sit down and do some writing for a long time now. I needed to write being a teacher, being a mother, being a wife, being a person, and all my levels of self prescribed failures at those identities. I haven’t written anything about my daughter in years, but today I am forced to put some words down and start stringing a level of coherence to my thoughts.
I was leaving Target, headed to Del Taco, and I started to cry. I started crying because of a phone conversation twenty minutes prior. I was still feeling, still aching, still worrying. That’s when I knew I had to write something.
It was a call from the dentist’s office. I’m setting up Leia’s first appointment. The anxiety started to mix in my chest when I asked how they get the children to cooperate. I know they’re pediatric dentists, of course they know how to work with kids. She explained how there’s a playroom and a tv on the ceiling and how the dentists have their ways. And as I listened my heart started beating faster because I knew what I had to say.
“The reason I was asking…I feel I should disclose…my daughter is on the autism spectrum.”
And I don’t know why that was so hard to say out loud. It’s lived every day. And I didn’t realize how much fear, worry, uncertainty curls in wisps around my chest about it. I was scared. Not for Leia, not worried for her to go to the dentist; it’s something she has to do and needs to be consistent with. I was worried what the person on the phone was going to say. Maybe she was going to pause or stutter or take back the appointment slot. Maybe she was going to pour out some saccharin coated “We won’t be able to see a child with those needs.” Ridiculous fears and worries, I know, right?
I used the word “disclose.” Like, I feel I should tell you this, so you have all the information to make an informed decision. That’s what it is. And that’s what it feels like a lot. When I talk to people who haven’t spent much time around Leia, I find myself having to explain. And I don’t know if I over-explain, or under-explain, or just say enough not to having lingering dread.
“Why don’t you bring your daughter?”
“Do you think she would like…?”
“You should put her in…”
“What’s your name, little girl?”
And then I have to explain how neither of us will enjoy xyz because I’d be chasing her around making sure she’s not climbing, jumping or stomping. I have to admit that I don’t know what she’d like because there’s a big chance she won’t sit still or attend to whatever is grabbing the attention of the other children. I have to talk about how I don’t know about her ability or willingness to follow directions or to do what other kids are doing because she’s pretty oblivious of other children. I’ll answer, “Her name is Leia, and she’s 3. We’re still working on saying (whatever it is they expected her to say).” Talking about it reminds me that she is different. But everybody is different. Every single f-c-k-i-n-g person on Earth is different. And I remember that and forget that within a matter of minutes.
Sometimes I can stay in the present, but most of the time I’m worried about the future–her future. I’m worried about the first time a teacher says she’s bad, or the first time she believes she’s not a good girl. I’m worried about something happening to her, and her inability to communicate what’s wrong. I’m worried about whether she’ll ever have friends, because I see other people’s kids and what seem like beginning friendships and I don’t see that anywhere in her life. Kids say hi to her, know her name, and play near her. She’s not necessarily responding back or interacting. I don’t know when she will–if she will. When we go to park and go down the slide together, she’ll say, “This is fun.” And it makes me so happy she’s saying a sentence in the right context, and then sad because I wonder if me and her dad are her only friends. And thinking about, talking about, worrying about the future makes me cry.
When my mind turns back to past, I feel like I can remember when she would say “Hi” to everyone she saw on the street. She would repeat some of the things you asked her to say. She would hand you books to read to her. She would point to things so you could name them. She was developing fine…or so we thought, just a little behind because of the prematurity. So we kept subtracting from that chronological age when she didn’t reach a milestone. Then at a point, the things she did before, the things that were developmentally on track, stopped. Some part of my mind thinks if I look at enough pictures and old videos I can see when she stopped and started taking steps back. Looking at the past, where she was, where I thought she was and where I thought she was going, makes me cry.
Sometimes I think it’s my fault. I think maybe I wasn’t supposed to have kids, that I was too old, too unhealthy, or just the wrong genes. Sometimes when I think back to the NICU days, maybe she didn’t get enough breastmilk. My milk never came in like that. We would nurse and I would pump, but it wasn’t enough. I think if I wasn’t her mom maybe she would have been okay; she would have been neurotypical. Thinking about what I wasn’t able to do, what I am not able to do, makes me cry.
So I have to find my way back to the present. When I am able to stay in those brief moments of the present, I marvel at her. She is fearless, creative, strong willed, musical, loving, and energetic. She is the girl who lived. He who shall not be named tried three miscarriages, preeclampsia, and three months early. But she is the girl who lived. Her life is a miracle. She is a miracle. She is amazing, and she has autism.
There’s so much I don’t know. There’s so much I don’t know about early childhood and development. There’s so much I don’t know about the autism spectrum. There’s so much I don’t know about how to tell what she can and can’t do, will and won’t do, should and shouldn’t do. Everything is uncertain. I crave certainty because faith is fleeting. God doesn’t just show up and tell you what to do and promise that everything is going to be alright. That’s not how life works. That’s not how any of this works. So what do you do?
What would Tim Gunn tell you to do?
Make it work.