The evaluation

Zadie sits on the couch playing Minecraft, her Harry Potter audio on as well. I call her from the kitchen.
"Would you like a peanut butter and jelly sandwich for lunch?"
No answer.
"Zadie? Do you want a peanut butter and jelly sandwich?"
No answer. I walk into the living room and lean over her, touching her shoulder.
"Zade? Do you want a peanut butter and jelly sandwich?"
No answer.
"Okay, I'm making you a sandwich for lunch."
"What? No! I don't want one."

We did get our diagnosis yesterday. Not only is she autistic, she's severely so. In retrospect, I feel like we maybe could have suspected autism ourselves, but it just seemed such a far cry from our knowledge of it, you know? Our kid is extraverted, theatrical, funny, verbal... To be honest, we just thought she was kind of an asshole.

I'm kidding. Sort of.

The testing was interesting. And long. The first part of the evaluation was all cognitive: could she draw this geometric image they'd shown her briefly? I tried not to stare, but I looked enough to see that they got more complicated, yet Zadie replicated them well. Then there were the dice. She had to re-create patterns using two, then four dice with two colors and a different sort of pattern on each side. She did that just fine, too. Then it was vocabulary. She passed that with flying colors (although I suspect they were going for a different answer when they asked what a safety pin, glue, and a nail had in common, and her answer was, "They're all objects, and they are all liquid if you get them hot enough.") She didn't know what a refund was, which may be because I am SUPER-lazy, and even if something doesn't work, I never go get a refund, because ugh.

Next they interviewed us both (but mainly me) about some of the things I'd written and filled out on the pre-evaluation forms. I hated to say some of the things in front of Zadie. They asked, "You say you are worried about her social skills. Does she have any friends?" And the answer is... kind of no. But she hasn't realized she doesn't have any friends, and she thinks she does. So saying that in front of her was a little heartbreaking. She responded by telling them about her best friend, and their questions and her answers sort of let her feel good about it, but made it obvious that the kid isn't someone she sees outside of school or anything.

Then I went behind a two-way mirror, which was weird, and they did a whole bunch of other stuff. They had her narrate a story from a picture book, taking turns with the doctor. Even though I sort of wanted her to get the autism diagnosis, I have to admit that every time she'd correctly identify an emotion, the doctors would both write a note down on their clipboards, and I'd feel like she'd earned a "normal" point. Like "Yes! She said the boy looked disappointed! Write THAT down, suckas!" It was... let's just say I may have some unresolved mixed feelings.

They played with some toys out of a Ziploc bag, and the doctor was like, "This is the astronaut, this is the pirate, and this is the warrior princess. Can we play?" And Zadie grabbed the pliers and the spoon and was like, "Yes... I'm fixing dinner," and starts pliering the shit out of the spoon. I don't know whether she passed that one or not. I'm gonna go with no.

They did a couple more look-at-this-drawing-and-tell-me-what-is-happening type things. Then there was another bag o' props, and in this one, she was supposed to pick five of them and tell a story with them. Now storytelling she can do! She went on and on, and the doctor was like, "Good, thanks" and Zadie was like, "AND THEEEENNNN..."

Then they started asking her about her feelings... what annoyed her (me and her dad pretending to be a stuffy British guy we call Rexford... long story), what made her feel relaxed (a cup of tea, a book, and a rainy day), what made her happy (drawing, snuggles with me, pretending)... But then they asked how she felt when she felt happy, and she was like a deer in the headlights. I've heard her stall and dither and talk her way into an answer, but I rarely see her just speechless. They asked her the same kinds of questions several times, and she literally just sat there with her mouth open and a look on her face that said, "What the fuck are you talking about?" It was very striking to realize that my daughter, who is preternaturally articulate, could not describe what it feels like to be happy. At all. Or angry, or sad, or anything else.

In fact, the doctor rephrased the question several times.
What does it feel like to be happy?
---
What is it like, inside, when you're happy?
Oh! I'm drawing or pretending. 
Okay, but what does that feel like to you? What's happening in your body? 
Well... my arms might have pen marks on them because sometimes I accidentally draw on myself when I'm drawing. 

She also probably scored pretty low on all the questions like "how do you know when someone is your friend?" This bit made me sad.

After that, I came back in, and they said we could take about a ten minute break while they wrote up some notes, and we went to the bathroom and got a drink, and then we came back.

It occurred to me as we sat there that if what we wanted was a diagnosis of autism, Zadie couldn't have been more helpful. She was fidgeting, arching her back, not making eye contact, staring into the mirror (one doctor had to move some furniture at one point to face her away from the mirror, and Zadie asked why and the doctor was like, "Oh, this is just how we do it now."). She hadn't let me comb her hair after swimming, so she had a big tangle in back. She hasn't been letting us cut her hair, so her bangs hung in front of her eyes. She had her Kindle with her and was playing Minecraft, and the doctor called her name and she didn't answer. She was, basically, the poster child for autism. It was weird to realize I hadn't seen it before.

About a month ago, I first introduced the idea to Zadie that we might have this evaluation. I laid it out pretty straight, as I saw it. "You know cousin C, and how he has autism? Well, they call it a spectrum, and a spectrum is like with color --- all the way from white, to light pink, to dark pink, to red, to almost black. Anyway, we think C is probably red, and you're like pastel pink." But I was wrong. While Z has no cognitive delays at all, her ability to understand emotions, relationships, etc. puts her smack in the middle of "severe." There was this number on her chart thing: it said "comparative scale: 10." And it didn't say what it was out of, but... well, you know.

We have an appointment next week with an occupational therapist and a speech therapist for some evaluations. (Sweetie thinks the speech therapist is wholly unnecessary, but I reminded him that length of speech, volume of speech,  and tone of voice are all speech-related.) So I'm incredibly glad that we can get started with that, and I'm already thinking that this will be GREAT for next year. Maybe her "discipline" issues will garner a little more understanding.

So I'm grateful that we got the evaluation, and I'm grateful for the diagnosis, and I'm a tiny bit guilty for all the times I've yelled at her for not doing shit when I asked her to (although I still expect her to do shit), and I'm a little guilty for not knowing it was autism, but not a ton, because damn, I'm not a doctor!

There were all these things on the evaluation form that we'd just... missed. Or ignored or overlooked, or noticed but thought they weren't a big deal, or gotten used to or whatever. Basically all these individual things that we didn't realize were part of a larger pattern. Does she nod yes or shake her head for no? Uh... well, no, she doesn't, I guess. Have you seen her do that? Come to think of it, I haven't! Does she use her index finger to point at things? Uh... what? Let me think... I guess not. Does she make weird noises? Yeah, all the fuckin' time! Does she make eye contact? Well... probably not as much as other kids, no, but we've gotten used to it. She's our kid, and that's just part of how she is.

But on the other hand, I did always know something was up. From the time she was about 18 months old, I thought she was strange about certain things. I'll never forget the time that she was jumping on the bed, and she jumped for so long that she got red and sweaty, but she wouldn't stop. She was just a baby, basically. When we got the ADHD diagnosis, I thought, "okay, we have an answer." But it didn't take long for me to ask Kaiser for therapy, for an appointment with a counselor. Did they have anger management? Is it possible that she has something else as well, like Oppositional Defiant Disorder or Bipolar Disorder? No, the therapist assured me. She's just a very intense version of ADHD.

In around April, her teacher mentioned to my mom that some of Zadie's behaviors reminded her of her autistic nephew. My mom mentioned it to me, and I thought it was more or less insane. But, never one to dismiss something without at least doing a little research, I looked up autism in girls, and I particularly researched Asperger's, knowing that it might be a better match than what people traditionally think of as autism. I was trying to keep an open mind, but I had basically already decided it was wrong. I was just, I thought to myself, doing my due diligence to rule it out.

What I found instead was about three straight pages of descriptions of Asperger's behaviors that described my kid very precisely. Like they'd been following her around. I sent it to Mom. I sent it to Sweetie. And after we all agreed, I sent it to her doctor, too.

So that's where we are today. My kid is the same kid she was on Sunday. Kind of an asshole, but also creative, articulate, energetic, artistic, funny, and sweet. I am the same mom I was, too -- mostly patient, but with occasional rising levels of frustration. I feel basically optimistic about this whole thing. I don't think a diagnosis is the same as a cure, and I'm not expecting things to change right away (or entirely), but I do think that there are positive things that are going to come of this, and we have such a loving and supportive family unit around Z that no matter what, we'll be able to hold it together.

Which, Zadie, is what you do with nails, safety pins, and glue, goddamnit!

Fears

Zadie's appointment at the autism clinic is in an hour.

Here are my top fears:

1. She does not have autism. Her difficult behaviors are entirely my fault, because I am an inconsistent, impatient mom.

2. She does not have autism. Her difficult behaviors are entirely personality-based, and she was born that way. We should expect the difficult behaviors to continue indefinitely, ramping up into drugs and sex and running away-type stuff in the teenage years.

3. She does have autism, but she's so smart, so high-functioning, that she does not qualify for any services or help, and we should expect the difficult behaviors to continue indefinitely, etc.

4. She does have autism, and we are told that the difficult behaviors are all part of the unique and special spectrum, and they are to be embraced, as they will continue indefinitely, etc. Welcome to Holland! 

Basically, the two possible good outcomes would be:

1. She does have autism, and we qualify for behavioral therapy, speech therapy, occupational therapy -- something that helps her not erupt in angry balls of fire every time we ask her to brush her teeth.

2. She doesn't have autism, but they recognize something else treatable, like ODD or bipolar disorder or something that we can get help with.

I'll let you know when I know.

Zadie's universe

We keep encouraging her to write this stuff down, but she prefers to pretend and to draw, so I want to make sure we have a record of all this.

When Zadie wants to "pretend Harry Potter," we rarely see Harry at all. In fact, everything is just a little bit different.

First, Harry has a twin sister named Azalea. She was born just before him, and is much more mature than he in many ways. When Voldemort came to attack them (at age 2, not one), the two of them together defeated him and broke his wand, killing him. Their parents, James and Lily, both live.

Azalea has a special relationship with their godfather, Sirius Black (whom she calls Uncle Siri). She has the profound honor of being the only student in Hogwarts history to be sorted into two houses, Gryffindor and Ravenclaw. She spends a week at a time in each dormitory throughout the school year. She's an exceptional student.

At home, Azalea has some special privileges: she has, for example, a tunnel under her bed that takes her anywhere she likes, including to the kitchen to get a midnight snack of cookies without waking her parents. Oddly, it also leads directly to Severus Snape's house.

Severus Snape has two children, Scarlet and Septimus. Septimus is good friends with Azalea (and sometimes, perhaps, more? They tend to go to dances together). Septimus often goes to Azalea's house for tea, but usually in secret, through the tunnel, as his father would be very angry if he knew.

Scarlet Snape hasn't been fleshed out as well, although I believe she's in Ravenclaw, rather than Slytherin.

Bellatrix Lestrange is working to replace Voldemort as the leader of the Death Eaters, but so far with little success. She has a daughter named Bellatrix the Second (for a while, her name was Saralina, which I preferred, but whatever). Bellatrix the Second had a very flirtatious relationship with Draco Malfoy, her first cousin, and in some versions they even got married. Bellatrix the Second is a particularly snappy dresser and a very wicked and evil Slytherin.

Draco Malfoy has a girlfriend at school named Crystal. Crystal has long pinkish-white hair, and is also a snappy dresser, with a fur dress for winter.

These characters tend to have tea a lot, go to dances (particularly the Yule Ball), and have snowball fights.

Zadie wants to pretend about 80 hours a week, so I do get rather tired of it, but I'm glad she has such an active imagination. Two notes, though: first, I think I'm spoiling her for future boyfriends. When I pretend to be Draco, the boyfriend to Crystal, I have to go on and on about how spectacular her accessories are. Zadie: No man in the world is going to be that complimentary about your fashion choices. Second, the other day she made me pretend with her (she called it "putting on a play") in front of the new neighbor kid, whose father is legit British. Sort of unthinkingly, I started doing my Sirius Black accent. About two sentences in, I said to the little girl, "Oh gee, you must hate my accent" (thinking that it was terrible to do a fake accent in front of someone who grew up with the real one). She said, "Oh, no! I love it!" I was tickled.

The kids, the bod, summer, stuff!

Z's appointment at the autism clinic is Monday, and I'd be lying if I said I wasn't a little worried about it. I can't put my finger on why, exactly, but there's some combination of "what if I'm wrong?" and "what if they judge my parenting and it's all my fault?" and "what if I'm right but there's nothing to do to help?" Lately she's been better in some ways and worse in others. She can entertain herself for long stretches (thank god!), she sleeps through the night most of the time (hallelujah!), and in a few, small ways, she has begun to be more self-aware and a little more aware of things like my limits (testify!). At the same time, she's prickly, quick to anger and blame, and still really, really shouty. There are times when I've seen Sweetie tiptoe to her door with a treat, like a popsicle or something, a smile on his face as he looks forward to surprising her, and then he'll knock and she'll shout "WHAT!!? GO AWAY! YOU CAN'T COME IN!" Like... okay. What do you do with that? Today she was panicked because she couldn't find her Kindle. First I suggested she look in her room, which was the last place I remembered her having it. She said, "What do I look like I'm STUPID?" I then went to look myself, and not seeing it, I went to the living room. I looked in a couple likely places, and then it caught my eye -- balanced on top of her easel. "Oh!" I said, "There it is!" She responded, "Why didn't you TELL me that's where it was?" I was like... dude, I did! The second I saw it! She acts sometimes like our every action is filled with malice toward her.

L is pretty much still a dreamboat baby. I don't even dream of running away to Aruba without him. He laughs in his sleep. He wakes up laughing. His laugh is a hearty, throaty, HAHAHAHAHA. All three of us live to tickle him, waggle our eyebrows at him, and otherwise be the one to make that laugh happen. Oh sure, sometimes he fusses in the night. But mostly he's easy -- he eats what we feed him, he splashes in the bath, he army-crawls around the house, and he takes his naps on my chest. Of all the things he's said a few times, the thing he says the most is "Mama." He woke up crying the other night and let out the most plaintive little "mama," but most of the time he just sees me and says "mama mama mama!" His first baby sign language is for "fan," as in ceiling fan. We aren't sure why he's so into them, but he's really, really into them. He likes light fixtures, too.

Hey, remember my big fuck-you to the fit mom who was body-shaming fat ladies? Fuck her, still, but I'm working on losing some weight. I still believe you can be healthy at various sizes, and I think other people can do whatever they want with their own bodies and shouldn't be shamed and judged, but man, I'm snoring and I've got plantar fasciitis. And that's not fat-and-healthy, that's fat-and-no-fun. So I've made some small, positive changes, and I'm seeing slow, important results. I'm not trying to drop a bunch of weight for bikini season; I'm trying to make long-term life changes to present a healthy, active role model for my two kids. And now that I'm nearly forty (oh my, why did I wait to have kids so late?), I need to make sure I can keep up with the children for, like, twenty more years minimum. And after that, I still want to travel the world. I'd like to be in good shape for that, not hobbling around on sad painful size tens.

I'm up to my usual summer activities -- trying to organize/clean/repair household stuff that went unattended while I was working. I'm attacking the garage little by little with the intention of having a garage sale, and of getting most of the things in my little office moved out there as well. I'm still not sure whether Sweetie will move into my office or whether we'll convert part of the garage into an office for him, but either way, a good start would be getting rid of rather a lot of shit. I also took a chair to get re-covered, called a guy about fixing the burners on my stove, and got an estimate for new gutters. Plus cleaned out the food cabinets -- always fun.

I thought about refinancing the house. The rates are low, and we still have a second that I just hate having, because it has quite a high APR. Plus, I'd love to remodel the kitchen, and if we weren't paying on two mortgages, we could save up for that. But the mortgage lady had several reasons (blah blah HARP rules) about why we couldn't really refinance to wrap that 2nd into the 1st unless (blah blah circumstances). Anyway, I finally figured out a way I thought we could do it, added up the cost of the new loan, the appraisal, etc., then did one more piece of math*, and I figured out it probably wasn't worth it anyway. So, we wait. But I don't love my kitchen. And I cook a LOT. And I wish it had more storage and nicer countertops and a better oven and maybe a breakfast bar so people could hang out with me and talk to me while I cooked, which is pretty much my favorite way to socialize.


So, I think that's about it. As always, I wish there were about 30 hours in a day, so that after I put the kids to bed, do the household chores, and get to the gym, I could also practice my bass, write and submit some poetry, and watch movies. But alas, the earth seems to keep turning at the same rate. Take care, all!
CM



*The math was "How much will the amount I owe on the second cost me over the life of the loan if I refinance it at about 4% for the next 15 years versus paying it (plus the extra we've been putting towards the principal) for the next 3 years 3 months at the 8.816% rate it's at right now. It turns out it will actually cost us less over the life of the loan to just keep paying the extra right now and get the damn thing paid off in 2018. So even though our total mortgage payments would be lower, I wouldn't be saving us money in the long run.

Zadie finished 1st grade...

And got her ears pierced. 

Lochlan is a mighty warrior...

Who enjoys PB&J.