GUEST POST: Disclosures, Prefaces and Caveats, by Queen Maisha the Good

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.


20641326_10212326173003014_1881637019_oI’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.

Still here, mostly

brainlessI don’t like single-daddery, guys.  We’re doing fine– the boy is still alive, as far as I know– but I’ve been in motion pretty much constantly since Sunday night.  Wake the boy up, get him dressed and fed, drop him off at my parents’, 11-hour work shift, pick him up, bring him home, put him immediately to bed, make sure all the pets are fed and watered, do one or two tiny things around the house, go to bed, spend the night getting kicked in the back by a horizontal five-year-old, wake up early, start again.  Wednesday I got out of work early but I actually had to go to a customer’s house for a service call afterward, which was… well, fun ain’t the word but it wasn’t as big of a deal as it could have been.  Today was my day off but I’ve spent most of it either napping or wandering around the house like a zombie, unable to figure out what I was supposed to be doing at any given moment unless that thing needed to be done in some other room.

To be clear: I just sat on the sofa in front of the TV with my laptop in my lap, wondering what I was supposed to be doing with it, for twenty solid minutes before remembering I hadn’t blogged in a few days. That kind of brainless.

Luckily for me, my wife is on her train and on her way back home, so if I can make it through tomorrow and Saturday everything will be fine.  It blows my mind that there are people who pull this off all the time.  Mental note: do whatever I need to do, for the rest of my life, to ensure my wife never leaves me.  🙂

In which I am dadding today

Sick_kid_t751x500So… four years ago, maybe? my son contracted the nastiest case of hand- foot- and mouth syndrome I’ve ever seen.  This isn’t saying much, as I know so little about the disease that I keep insisting on sticking the word hoof in there whenever I have any reason to bring it up.  The boy, to be clear, lacks hooves.  But whatever he had, it was Goddamned horrible– there were scabs all over him, particularly around his face and his eyes, and he was basically a giant ball of horror and misery for a week and a half or so before it finally cleared up.

Amazingly, though, other than a couple of bouts with the sniffles that was the last time he’d been sick, until this week.  On Saturday he abruptly threw up in a parking lot on the way to the grocery, and last night– yes, four days later– he threw up again three more times.  In between?  Completely fine.  Today?  Completely fine as well, eating everything in the house.  And I’ve been queasy as fuck and waiting to throw up all night, as well as the vague nightmare where all you really want to do is sleep and all the boy wants to do is lay around and watch videos because He Threw Up Last Night and he knows he can get away with it.  I’ve been trying not to nap all day.  Blech.

In other news, Balremesh and Other Stories was, for a brief period of time, actually outselling a few Neil Gaiman books in one of the microcategories it’s slotted into.  It’s still available for preorder, for just 99 cents.  Go get it!

Creepy Children’s Programming Reviews: MINI FORCE

My kid’s day care was supposed to have a Father’s Day party today, but I’m kind of pissed at my kid’s day care right now– more on that later, maybe– and so instead I picked him up early and we’ve been having a Daddy/Kenny day at home.  Which means lots of toys (there are Transformers everywhere) and lots of binging terrible Korean animated shows on Netflix.  This is probably the fastest any show has gone from “I’ve never heard of this” to “I must do a CCPR post on this immediately,” by the way.

Meet the Mini Force:

They’re little talking animals.  The pink one is a girl, which I’m sure you’ll all find tremendously surprising.  The red one is a bird, although he doesn’t seem to fly.  Other than the red one, I have no idea what kind of animals they are.  Maybe they’re all cats, other than the bird?  The blue one might be a skunk?  I have no damn clue.  Anyway, they talk.  And they live with a girl named Susie, who in animated kids’ show fashion appears to have no parents or adult influences.  Susie knows they talk and can talk back to them.  They look just like Octonauts.

Here’s how every show goes: each episode starts with a bunch of woodland animals being inconvenienced in some way, most of the time by a purple Shredder-looking dude named Pascal or some robot he’s created.  Sometimes Shredder’s boss is around; he’s dressed like some sort of Spandex-wearing supervillain and I don’t know his name.

The degree of the inconvenience varies.  Sometimes it’s special pop that makes the animals fall asleep.  Sometimes it’s a snake monster that turns them to stone.  The stakes tend to vary.

At any rate, after the animals are inconvenienced, we cut to the four Mini Force dudes at home with Susie.  They have some sort of interpersonal problem that will not be resolved and are then summoned via some sort of blinky device that one of them carries.  Where to?  Not clear at all; they run away and then are suddenly inside some sort of giant complex.  I’m not sure if Susie knows about this part of their lives; she probably wonders where they go all the time.  They meet with a hologram of a cat.  I don’t know what the cat’s name is– they just call him Commander– but he has a mustache and wears sunglasses and a Kangol.  I don’t get it.

If Pascal isn’t the villain, then the robot causing all the trouble will have -mon at the end of its name.  Every time.

Then they become Power Rangers.  I’m not kidding:

Like, the theme music even refers to them as the “Super Rangers Mini Force,” although there’s no credits for Saban anywhere and I’m pretty sure this is just a knockoff and not an official thing.  But anyway.  The very next scene after the transformation, they’ve teleported to wherever the bad guy is– no time for exposition here!– and then there’s a fight. The fights are those Power Rangers-style fights where there’s always time for lots of talking in between people shooting at one another and your weapons have to be summoned by saying very long phrases out loud.

They lose the fight, and one of them is generally incapacitated somehow.  There is a lot of grunting.  Seriously, the dialogue in this show is maybe 60% grunts.  It’s amazing.

After they lose, they summon their “Force Cars.”  Why they didn’t just drive to the fucking fight in the Force Cars isn’t clear.  I assume everyone just sits around while the Force Cars drive out to wherever they are.  The Force Cars are, no shit, Transformers:

Somewhere in here, the villain gets super large, also Power Rangers style.  And not all the time, but sometimes, the Force Cars have to– wait for it– join together to make a single, much larger Force Car.  At which point the show becomes Voltron.  And then they win, and the show ends abruptly, most of the time with no indication of whether the inconvenienced animals at the beginning of the show were ever made better or not.  Maybe they’re still asleep or made from stone or whatever; who knows?

It is impressive to have ripped off that many well-known properties so blatantly and still not have been sued into nonexistence.

Two brief daddying stories

pictureThe boy’s back in day care now that school is out.  This is his fourth day with his new group, which I can only assume has a mess of other new kids in it as well since just about everyone just got out of school.  Today was the first day I’ve picked him up, though.  As I walk in, he and another boy are a a table playing with a bunch of plastic dinosaurs.  He looks up and sees me.

“I need just four more minutes, Daddy,” he says.  And the simple fact is I ain’t really got shit to do at that particular moment, so, sure.  “You have two,” I say, because it’s not like he can tell time anyway.  And I let him play for a couple of minutes and kind of observe the rest of the kids, and then nudge him toward the door.  He doesn’t move immediately or anything, but he complies quickly enough that I don’t have to ask twice.

“You must be a really patient dad,” one of the teacher says to me.  And at first I feel like it’s either a compliment or a sign that these folks spend the day dealing with angry lunatics, but now a couple of hours later I kind of want to spend some time interrogating the boy to see if he spent the day driving them insane.


Idle-Hands-1

On the way home we take the new car through a car wash.  Apparently the local sparrows all got diarrhea while I was at work yesterday and were able to figure out which car was the new one, so the thing is a huge mess.  I’m a little nervous about it because he got really scared the last time we went through a car wash and I’m hoping it doesn’t happen again.

At some point he asks why I’m driving so slow, and I explain that I’m not controlling the car– that there’s a track I’ve driven onto that is moving the car for me and keeping it at the right speed for everything to work.

“Oh.  Is that like alien hand syndrome?” he says.

“Sort of,” I say.

Someone explain to me how the fuck my five-year-old knows about alien hand syndrome, please?