Summing Up

Joey seems to be enjoying school. I plan, once the Christmas break is over, to try to arrang a morning when I can observe the class; I don’t really know what it’s like for him there, and it still feels weird to me not to be present for his speech therapy and so on.

Joey’s occupational therapy assessment happened, and the therapist rated him as doing very poorly in every measurable way . . . so I guess he will be getting OT. She also recommends that he get clinic-based OT, but I don’t think that will happen. I will ask his new worker at the regional center just as soon as we find out who that is. And if she (or he) doesn’t get in touch with us before Christmas, I’l just call the RC after the holidays and try to find out what’s going on.

Kit is also enjoying Joey’s time at school; he and I are going on play dates and outings, and he is getting me to himself for the first time in his life. The two of them are having more pleasant interaction with one another, playing gentle chasing games together. That has been lovely to see.

MY husband and I were talking about the family Christmas letter that my father will be writing; it has been yet another year of hard news. My father’s cancer came back and he went through radiation and also broke his hip a second time; my mother’s stepmother has been diagnosed with breast cancer; my brother is still waiting on his kidney transplant; Mr. Book and I are now in a long-distance relationship; and Joey was diagnosed with autism. But, I said to Mr. Book, Joey is so much happier than he was a year go. It was hard for us to understand how sad and angry he had gotten—and his increasing inability to communicate with us was obviously distressing to him. He has been getting real help since May, and is again the sunny, sweet boy we knew before his regression. Everyone he works with talks about what a happy, likable kid he is.

Kit, too, is better off than he was, now that I’ve identified his dietary sensitivities—and now that he can run and climb and talk. He is ridiculously charming, and less heedlessly adventurous than his brother, which I am perfectly happy with.

Cricket seems to be in a happier and healthier pace as well, from what I can tell. His parents are legally divorced, but Nora has brought more emotional stability to his life than I think had been present for some time before.

My mental health is worse than it has been in awhile, but I am able to hold on to a certainty that things will get better. I don’t know when, but I am sure that they will.

 

Means

I have wondered, recently, whether Nora and I might have been friends. When I was growing up, I remember having conversations with my sisters about whether we would have been friends if we hadn’t been sisters—at least for me with each of them, I think that the answer was no, which always bothered me.

Situationist Grafitti May 1968

Situationist Grafitti
May 1968

I think that the people we are now could be friends even outside of family, maybe: but when we were growing up, they were sociable and outgoing and successful in school, whereas I was moody, odd, and plagued by social anxiety. I hope that when the two of them had this conversation, it went better than it could with me. My mother has had this conversation with me, and I suspect that she must have done with my sisters, as well. So maybe this is just a conversation that happens in my family, but it does, and so I’ve been wondering: If it hadn’t been for everything that connects us, could Nora and I have been friends?

Probably not: I’m better at faking it, and understand now why one might, but I’m still not an extrovert; I suspect that no amount of therapy and self-improvement is ever goin

g to change that. But Nora is a kind of person I like, and would have quietly wished that I could be friends with if we’d been in high school or college together. She’s gentle and affectionate with Cricket, too, and interested in him. Seeing them together when they visited in September—it was very much like seeing a tired parent who was travelling alone with a four-year-old who was completely, head over heels with her kid. There’s nothing more winning than seeing how good someone can be to other people.

Back way back when, when I was pregnant and then when Cricket was a baby, I used to wish that I could be friends with Ruth especially, but with both of them. But even if we were all in high school together, it just wouldn’t have played out that way—and as adults, we are separated by socio-economic status as much as we are by our love for the boy we have in common. At the moment, that is somewhat disguised by our circumstances; living with my parents obscures our poverty. But I remember a conversation with Ruth quite some time ago in which she talked about the benefits of preschool and I talked about my plans to home preschool Joey. And the thing that no one said was that of course we could not afford to send our boys to preschool—I still believe in the benefits of home preschool if that’s the right choice for the family, and am cautiously planning that for Kit. But I’ve seen preschool programs that would be amazing opportunities for a kid, and that cost more than our entire income last year. Cricket can go to those schools; Kit can’t.

It’s hard to talk in any detail about adoption without talking about the money. When I planned to place Cricket, money was most of the reason why; certainly if I had won the lottery or gotten a good job I would never in a million billion years have placed my son. When Ruth included me in a mass email in which she asked people to support renewal of the adoption tax credit, I was horrified; if I had gotten from the government that exact sum, I would not have placed my son. And things would be tighter now with three boys—and God, how I wish that they were.

I know and consider friends a number of adoptive parents, and I don’t think there is anything wrong with being in a financial position to adopt. But adoption breaks us, the mothers and fathers, into two groups: those who place, and those who parent. And those of us in the first camp tend not to share a SES with those who raise the kids we bore. Of course there are any number of exceptions, and people who aren’t poor place, and people who aren’t well-off adoption; I would not for a minute dispute that. But looking at the big picture—and at my picture—well, it is maybe not the most shocking thing, that I’m a socialist.

Scrutiny

The clock starts today. Today, Kit is eighteen months old, and for the next six months, we will all be watching him for markers of autism. Not that we haven’t been; my father mentioned that it is stressful to see him spin, even knowing that all little kids spin.

I know exactly what he means, and I probably make it worse—if Kit twirls in a circle, I freak out, although in practice this means that I open my eyes slightly wider and grow very still—this is what it looks like when I’m panicking, and Kit knows it, and he is fascinated by his own power in this situation. If I spin a couple of times, my mama is terrified! I know that little kids spin, and I know that Kit is mimicking his brother sometimes, and even so.

In most ways, Kit seems deeply nonautistic; he is incredibly social, he does pretend play, he mimics people’s expressions. None of those things have ever been true of Joey, pre-regression or post-. Kit is also using language in different and more sophisticated ways than Joey ever has. Today alone, Kit expressed his ambivalence about being offered a cracker when he really wanted to nurse (on and on, forever, after just having finished nursing): “No! No! No, Mama! Okay. Yes. No! Okay. Cracker. No! Okay” and then a grudging acceptance of the cracker; saw himself in the mirror and said “Pretty!” which I don’t think I’ve ever called him (“cutie,” “biscuit,” and “sweetheart” are more my speed); and brought me a small knight stuffed toy and said “Doll!” although this toy has never been pointed out to him, or called a doll, at least by me or in my hearing. He’s not just echoing or memorizing labels—he’s generalizing and complaining and comparing. But I know that there are no guarantees, and so I’m just going to cultivate an ulcer until, oh, mid-June or thereabouts.

Happy Birthday, Cricket

Cricket’s birthday is this weekend; he received a gift and a card from us on Wednesday (I sent a Ninja Turtle that he begged Nora to buy him during his visit here), and I will be continuing my batty ritual of jumping into the pool on the day itself. Some people make cakes or release balloons; I get very cold and wet.

We last Skyped a few weeks ago—Nora is faithfully keeping our appointments every six weeks—and Cricket was completely not into it. He ended up just wandering away after frowning and choosing not to talk. Nora stayed on the call, chatting with me and with Kit. She told me that they had just finished reading The Lion, the Witch, and the Wardrobe together, and I asked whether I might send a book: Over Sea, under Stone, which has all of the adventure without C.S Lewis’s misogyny. Nora and I exchanged a couple of Facebook messages over the next few days, and she said that she wishes that Cricket was more interested right now—that he likes the idea of having brothers, but isn’t into the reality of it so much. But when the book arrived, he was excited, and he asked Nora to start reading it to him right away.

My favorite thing about this last Skype call is that it felt like the first time that Nora wasn’t trying to hide big parts of her everyday life; I have known about her girlfriend (from Ruth) for over a year, but this was the first time that Lily was visible; too, usually Nora will say (e.g.) “We might go to the beach this afternoon,” but this time, it was “Cricket and Lily and I might go to the beach this afternoon.” Nora also just bought a house, and I admired it, and she promptly sent me her new address.  It felt comfortable to talk to her, and she reassured me that all kids have a hard time starting preschool, and that it would be okay. (Turns out, the joke’s on us: Joey has had a fabulous time at school from Day One, and hasn’t seemed to miss me at all. I guess he was ready!) I feel like we’re at a good place right now, just as Cricket is less interested in the adoption than he has been since he was a baby. But as I told to Nora, the silver lining for me is that I can see that he’s comfortable expressing that disinterest—I’d like to think that he will always feel comfortable sharing what he’s feeling, even when it’s not what I wish he was feeling.

Interior Decoration

Friday wasn’t our best day. Joey’s routine has been completely disrupted—therapies have stopped and started with his birthday, and everyone had Thanksgiving and the day after off work. On Thanksgiving, while I was kneading dough for rolls, Joey insisted that we needed to get in the car: “Car. Shoes. Car. Okay.” When I explained that we were staying at home today, he burst into tears.

Friday was rainy—a rarity, here—and I tried to make it fun. I pulled out the dress-up bins; we made a tent out of bed sheets. But Joey was crabby and tired. (I suspect that he is going through a growth spurt, as his general crankiness and exhaustion have gone along with eating a ton.) Finally I put Kit down for a nap and Joey starting insisting that he wanted “that”; just saying “Dat! Dat!” while flapping his hands wildly and growing more and more upset. I asked him to show me, and I explained that I didn’t know what “that” was, and he just got more and more upset. I tried to put him down for a nap, foolishly—he doesn’t nap anymore, but he was just so tired. But after fifteen minutes, I got him up and then he immediately started getting upset with me again.

“Buddy, do you want to take a bath?” Joey was thrilled; he rarely gets a chance to bathe without Kit, and while a bath with Kit looks like fun (he shouts and splashes and just generally has a noisy good time), Joey likes to lie back in the water and relax. Once in the bath, alone with the water and his bath crayon, he seemed happier than I’d seen him in days.

I spent a great deal of Thanksgiving morning scraping poop out of the carpet and off of the furniture in the boys’ room. Joey has been taking off his pajama pants and diaper at night for a while now, but while there has been pee to clean up, this was a whole different matter. Before I steam cleaned the carpet, I ordered some escape-proof pajamas that another mother of a special-needs child linked me to over a year ago, when we had another period of nighttime nudity. I didn’t buy them then because they were very stigmatizing in appearance; since then, I am happy to see, the manufacturer has started making pajamas that look very much like normal pajamas, albeit with the zipper in back.

An older friend of mine whose autistic son is in his mid-20s advised me to enjoy this time when we look like other families, and to avoid making Joey stand out while it was avoidable. I don’t know how I feel about that advice; it is coming from a lot more experience than I have, certainly. But when people don’t know that Joey is autistic, they just see a little boy who won’t look at them or talk to them, and who throws shocking tantrums over trifling matters. And that could be any three-year-old, I guess, but it has been my experience that when people learn that he has a diagnosis, they are either understanding or obviously uncomfortable—and if they are going to be uncomfortable, I want to know it. I recently joined a new moms group, and at my first group play date, it came up and I mentioned that Joey is autistic; the woman I was talking to said, “I don’t know very much about autism. You’ll have to educate me” and she seemed perfectly at ease, and I relaxed a little.