Thursday, August 30, 2012

A Normal Life

This weekend my husband is going to WorldCon, his first vacation in 5 years. I'm so glad he's going. We had a rough summer, and while I think I may have had it worse, his was no picnic. In addition to not having some down time while Diana was in summer school, I ended up in the ER twice with an infection caused by complications of a gastrointestinal condition. (At least that's what the docs think it was -- they weren't 100% certain.) I don't like doctors, I don't like hospitals, and I resent being treated like a pincushion. My bruises that resulted from the needles still haven't completely faded.

ANYway. Yes, I am very glad he's going. He deserves the break. He worried about me, and I think I shook him up a little with that 104º fever. At the same time, I am jealous. This time last year, I was reminiscing about the awesome time I had on my latest trip to Ontario. My anticipated trip this year fell through, because of health issues on my end, and scheduling issues on the other end. And if ever there was a year I needed a vacation, this was it.

I hate this feeling of being jealous of my husband getting to do something so fantastic as WorldCon. The annual convention is a traveling one, it's not always in Chicago; last year it was in Reno, Nevada, and in 2010 it was in Melbourne, Australia. When he mentioned it to me, months ago, I insisted he go. And it's not even jealousy because I want to go, too, it's jealousy that he's getting to go somewhere and do something that's fun and interesting with like-minded people. I wanted to go to C2E2 this year; that didn't work out. I would have loved to go to Geek Girl Con, but that was the weekend right before Diana started school, and there's no way that was going to work out. Hell, I even though the Fan Expo up in Toronto would have been cool, but (say it with me!) that didn't work out. There are tons of small cons and ginormas cons all over the United States and Canada. There's a bunch within an easy drive from home. But how much fun would they be alone? And I'd have to go alone, because we can't take Diana to them (too crowded, and she'd be so bored).

I suppose what it boils down to is that I'd really like to have a normal life, whatever the hell that means. I don't want to have to worry about how we're going to manage to go to a con (or even on a date!) because we don't have anyone nearby who can stay with Diana while we're gone. I want to be able to book a hotel for the three of us and go to something like C2E2 and have her be engaged by stuff there, too. But we can't. Autism is part of who she is, and this is what my life is.

I live online. Sometimes it feels like I am living my life through the experiences of others, but when I am constrained by circumstances, living vicariously is better than nothing.

Some days I take naps, just so I am not conscious for a while.



Yes, I am aware: this is depression. I've been here before. I'll be here again. This is my normal...

Monday, August 13, 2012

Home Library & High School

In my effort to finish (finally) unpacking the boxes in the basement, I hit upon a practical solution for the many (many!) boxes of children's books: I would annex the guest bedroom as a children's library. This was perfect on a couple of levels: 1) there's no more space in the main library, what was a formal living room; 2) the guest room is right next to Diana's room, so she might actually read the books. It's been particularly confounding and a little heartbreaking that she, unlike both of her parents, is rather indifferent to books. She has certain books that she has loved until they fell apart, and her favorite books have mostly been alphabet and picture vocabulary books, but she's not the voracious reader we both are. I tried to read to her when she was small, but she wouldn't sit still and listen, and would chatter over me. Since she didn't seem interested, I gave up. (Perhaps if I had persisted, the outcome would have been different.)

When we packed up the house to move, the first thing we packed was the books. Those went to a storage locker and were brought to the new house once we got some more bookshelves to put them on (we had more books than we could shelve at the old house, many never made it out of the garage from the first move). Once we got the library set up, it was pretty clear there was no room for kids books, so they've sat in the basement for two years.

When I got the idea to put bookcases in the guestroom and use it for a children's library, I wasn't sure if my husband was going to groove on the idea, but he didn't even hesitate and said that was fine. I bought two tall and one short Sauder bookcases and started hauling books from the basement to the second floor. I use LibraryThing to keep track of our collection, so I took my little netbook up so I could add books to the database as I went. A few times, Diana would come upstairs and poke her head in to see what I was doing. The most rewarding thing was the expression of interest on her face. Well, almost the most rewarding thing. As I was nearly finished with the unpacking and shelving, she came in and sat on the floor next to a case of books that were some of her favorites and started paging through them. THAT was the best. She wasn't reading them the way I would, but she was happy and she had a book in her hands. Reading the Mama Be Good blog has given me food for thought, and not imposing my expectations on Diana, letting her be her, has been a reinforcing message there. (So thanks, Brenda, if you see this; that warm-fuzzy moment was nudged along by you!)


Unfortunately, because it is the nature of parenting, my warm-fuzzy feeling evaporated into worry and anxiety: today she starts high school. She "didn't qualify" for summer school, so she and I have been in each others' pockets all summer. (She was tested before and after Christmas break to determine if she was retaining things she had learned. Since her test scores indicated that she was retaining information, she didn't need summer school according to the school district. We will not be doing that again next summer.) Theoretically, I should be uncorking the champagne or doing handsprings down the middle of the street. Unfortunately, all I can think about are the million and one things that could go wrong. She's vulnerable. All teenage girls are vulnerable, don't get me wrong; the risks for being female are pretty huge, even in a supposedly civilized first world country. But Diana is vulnerable in ways that make me lose sleep, and most high school boys are barely human. And now she's going to be surrounded by them...

At least that's the image in my head. It's (probably) not a true one, because she'll be in a small, self-contained classroom, not mainstreamed, and her exposure to the school's general (neurotypical) population will be less than what I am imagining. As her mother, I worry. Because I know her better than anyone, I worry. Because I know that teenagers today are not like teenagers when I was one, I worry. I will be on tenterhooks until she gets off that bus this afternoon, and I can attempt to gauge her mood to see how the day went.

I've tried to dial it all back as best I can so it didn't telegraph to her and make her anxious; I don't know how well I succeeded. Every parent worries. I know this. But I am not "every parent" and she's not just some child, she's mine, and "worry" is kind of a tepid word for me right now. I'll probably settle down in a week or so. Probably...

Thursday, August 2, 2012

Felt Food & Performance Anxiety

My daughter has been enamored of pretend food since she was a toddler. She rarely ever plays with it, almost never pretending to eat it or serve it to other toys, she just hoards it. It tapered off for a while, and we told her we weren't buying more of the same things since she had a boxful in the closet already. Then she started requesting felt food...

I made her a deal: if she would try one new food, one full bite of something she'd never eaten before, I would make her three new felt foods. (Yes, I blackmailed my child into eating. It worked. Try it.) These felt foods were simple, flat (2-dimensional) representations of food, some rather crude. She seemed happy enough with them. Happy enough that they fill a box.

The box is about shoebox sized. On top is a pizza with extra cheese.

Earlier this summer, she asked for a "green riding hood," and we thought we figured out what that was. She kept saying "iron" and we thought she meant "iron-ons" and we went to the fabric store to look at felt appliqué iron-ons. She was unhappy with those, so we told her "show us" and she lead us to the sewing machines in the center of the store. "Iron" was apparently "sewing machine," though neither of us have any idea how she got those things mixed up. So I dyed a white sweatshirt green (she specified she wanted it to have a white zipper) and hand-appliquéed onto it a "happy strawberry." She seemed happy. (Though she wasn't thrilled that I didn't use the sewing machine.)

It was late when I finally finished it; I let her stay up
so she could have it before bed.

Happy to have figured out what she wanted (or so we thought), I noticed the store was having a huge same on t-shirts, so I bought a pile of them, to sew on felt representations of the various "happy" foods inspired by Heidi Kenney. I made a t-shirt with the milk carton on it. She was not as thrilled. It wasn't what she wanted, and now we're both frustrated. Now what?

I'm not exactly sure when, but some point this summer, she discovered Etsy. More specifically, she discovered felt food on Etsy. No longer content with the 2D variety, she finally managed to communicate to me that she wanted stuffed felt food - 3D representations. THAT was what she wanted when she said "iron" (and meant "sewing machine"). She did still want the green riding hood, I do think we got that one right, but she must have thought I was an idiot for making the milk carton t-shirt...

A pre-high school physical revealed that she is a bit anemic, and the doc wants her to eat more (ha! try ANY) green foods, more (again, HA!) red meat, and take a vitamin with iron. I spent 30 minutes reading packaging at Walgreens, trying to find a vitamin that was going to work for us. I ended up with Flintstones chewables with iron, and a liquid vitamin supplement with iron. I figured if she couldn't tolerate the Flintstones, we could use a medicine dropper for the liquid. Turns out, the Flintstones are working just fine. (My husband and I were both stunned. The first few times, we watched her to make sure she was actually eating the thing, and not hiding it in the library or sneaking it to the dog.)

ANYway. The same rule, modified, would apply to the 3D foods: Try something new, get one new stuffed felt food. Green food... ok... butter lettuce. Reasonably innocuous, and not as devoid of nutrition as iceberg, right? So I took some cheese slices and rolled a piece of lettuce inside, and told her it was a "salad stick" and if she ate that, she could have a felt food. It worked! (Mental handsprings!)

Not to scale: The purple blob under the grapes is purple cabbage,
and to the right of that is a head of lettuce.

I started adding pieces of lettuce to her cheese tacos, and she ate that, too. Felt food is a huge motivator for her. Wanting to get more iron into her, and a few more vitamins, I switched from the butter lettuce to baby spinach. Again, success. I'm so excited that she's eating it without complaining or gagging, that the "new" food is no longer a requirement - eat spinach and a vitamin, get felt food. The red meat is still going to be an issue, unless I can convince her to eat hamburger on her pizza.

I was talking to a friend about all the felt foods, and they asked me what she did with it. I explained that she didn't do much with it other than add it to a hoard. They told me that I was a good mom for making all this stuff; I tried to shrug that off - it's only time and felt is cheap, plus it's good practice sewing. No, I was told, I was doing the "right thing, not the easy thing" and for that they considered me their "parenting role model."

I was stunned.

I am rarely at a loss for words, but for a moment, I didn't know what to say to that. Finally, I said "thank you." I was, and am, humbled and touched by that. Coming from someone I consider to be an excellent and loving parent, and honestly someone whom I envy, it was very humbling. And wow, no pressure there, nope! I don't think I've ever - knowingly! - been anyone's role model, even my daughter.

And you know, it also felt pretty damn good. Diana rarely acknowledges the lengths I go to to make her happy, and that's fine. I mean, I'm pretty sure I didn't acknowledge all the stuff my parents did for me, either, so that's really sort of a kid thing, not an autism thing. Rarely do I get much praise or recognition, and I don't expect it. You don't meet your garbage man on the curb and tell him what a great job he's doing, do you? (Well maybe you do, in which case you're a better person than I.) Anyway, my point is, I'm just doing my job. I'm her mom, this is my job: make her healthy and happy and help her grow.

My friend's timing was pretty awesome, too. I've been feeling pretty low; it's been a rough summer for me for a number of reasons, and I'm happy it's nearly over. Getting a pat on the back was unexpected, but needed. Sometimes something as simple as "you're a good mom" can mean the world. So, to my dear friend, again my heartfelt thanks. I needed that.