Strange Mail

On Christmas Eve, I received a form in the mail letting me know that the state will pay to institutionalize Joey. As I write this, he is lying on the futon, listening to his mp3 player and singing (wordlessly, tunelessly) along to the Frozen soundtrack. He’s four years old now, and the way that the system views him is changing.

Mister Book and I long ago concluded that Joey would likely not be one of the children to “recover” from autism; now that he is four, the state is coming to the same conclusion. His hours of behavioral therapy (ABA) are being cut, and while the cuts are not dramatic, his ABA supervisor has explained that they will probably continue to be cut every three or six months.

Joey has moved on from the mp3 player, and is playing with one of those Fisher-Price cash registers—it’s mid-morning, and he’s hanging out in a diaper, resisting any suggestion that maybe it’s time to put on some clothes. Kit was recently potty trained, and while both boys went through the same training routine, Joey just wasn’t able to do it. He doesn’t have the body awareness necessary. Joey has another week off from school, and while I’m trying to keep him somewhat busy (he is Captain Cabin Fever), he has been extraordinarily sweet and even-tempered for his break so far. I’ve been carrying him in the Ergo, and the Mister and I have decided that we’ve got to set some money aside for a preschool Kinderpack—one of the only carriers that can accommodate a kid Joey’s size—because boywearing is so good for his mood and stress levels. Can I say boywearing? Babywearing just doesn’t seem like the right word when I’m strapping a four-year-old to my back. The Ergo is holding up admirably, but it’s really not meant for bigger kids, so the strap cuts into my stomach . . . and when Joey climbs down, it is clear that his butt is asleep.

I can’t move past that mail; Joey is a really excellent little dude, and it’s jarring to get an official announcement that he is now big enough and disabled enough that the state will institutionalize him if I wish. Joey’s Regional Center worker has already checked a box saying “No thank you, we have made other arrangements (in-home care),”; maybe she has some sense of how upsetting it can be to get this offer. I might have filled in that blank with something less official-sounding, like “Please don’t take my baby.”

Back from the Midwest

It was good to see Mister Book. This is a strange setup—I always hesitate when having to fill out forms over “separated” and always choose “married,” since “separated, no, not like that, we love each other and wish we were in the same place” mysteriously is not a standard option. Ours is not a standard situation.

Christmas is not a great time to be apart. We are both big fans of Christmas, and while I will videotape the kids on Christmas morning and certainly we will Skype, he feels very much his isolation at the holidays. Kit is more and more able to have a relationship with his daddy, and while this is mostly the greatest thing (you should see his eyes light up when I ask whether he wants to talk on the phone with Daddy), it makes the separation harder for the Mister, no question. Joey, too, clearly feels love for his dad, but he’s more prone to punishing Mister Book for his absence with shunning; the last time we Skyped, he carefully kept his back to the computer for several minutes, making his disapproval clear. He gets that sort of thing from his mama, I’m afraid. I am feeling especially guilty about Kit and Joey being separated from family in more than one direction, and have as a result kind of overdone it on presents this year. I’m also trying to get them to do tons of holiday activities (“Let’s paint ornaments! Let’s decorate cookies! Let’s make Christmas pictures to send to Daddy! Let’s maybe let the boys just hang out and stop trying to be Jane the Holly Elf for an afternoon!”), and they are sometimes game and sometimes not. (And fair enough: that is the human condition.) I love them a lot, and I feel like I’m letting them down, especially because I am often snappish with Kit these days. (Kit is involved in an extended science experiment that involves flapping a hand an inch from my face, whining and screaming a great deal, refusing to do simple things for himself, and just generally trying to see what will make Mama crazy.) I wish I was a better Holly Elf.

They’re both great kids. I keep saying that, right? Because it is true. I feel guilty when I get annoyed at them, too. I am slightly dreading having to take them both to play dates while Joey is on winter break, and I also feel guilty about that. Tomorrow they are both going to a Chanukah party/play date, and I can’t stop worrying about what will happen if half-potty-trained Kit has an accident (he has not thus far been willing to use an unfamiliar potty) or if Joey gets overwhelmed. I know that we can always leave, but I have already been that mom with the wailing, pee-soaked toddler in her arms and the wailing, frustrated preschooler trailing behind her, and I was that mom yesterday in fact, and I would like a slightly longer gap between these public episodes of my inadequacy.

I don’t know whether I’ll blog again before Christmas, so let me say that I think our Christmas will be very nice, and that I will be able to set my angst aside and just enjoy the kids and my family and the really excellent food we’re planning. I really do understand how fortunate I am, even when I give in to my period bouts of whining. Poor Susie, with her loving family and excellent kids! Poor Susie, with her regular contact with her placed son! If anyone out there has a tiny violin, this might be the perfect time.

I hope that all of you have a very Merry Christmas if you celebrate it, and bright and blessed winter holidays for sure. Peace be with you.

How the Long Distance Is Working

I mean, we miss each other. It’s hard. But we’re okay. I am fortunate in having recently gotten a gently used laptop, which means that my older laptop will go to the Mister, which means that he will have his own computer and we’ll be able to Skype whenever we like. And, you know, he’ll be able to read the news and check hockey scores.

We were on the phone the other night, and I brought up the fact that I don’t run everything by him anymore, and haven’t for a while. At first, every small scheduling change was brought to him so that we could talk about it—but I handle most little things on my own, now, although I usually end up chatting with him about them. Joey’s occupational therapist can’t see him Thursday, so I canceled his Friday group and she’ll see him then; we’re hosting a play date on Friday morning; I think we’re going to give all of Joey’s teachers and therapists homemade candy and ornaments for Christmas. That kind of thing. The separation has made me grow up in some ways, has made me tougher and more independent—but I don’t think it has pulled us apart. Far from it: I think I can be a better partner now. This is a tiny and dumb example, but I really want to take Kit to see Big Hero 6 in theaters. Before the separation, I would have made Mister Book be the voice of reason on this one, but since he isn’t here, I had to admit on my own that he just isn’t ready yet, no matter how cool the movie is or how much I think he would like it. If I am too tired to parent in the morning, I still have to get everyone fed and diapered and dressed and into the car. If I am too angry at one of the boys to be fair, I have to just give him three minutes in time out while I get myself together—and then I have to open his bedroom door and be fair.

There’s no silver lining for my sweetheart; he’s just lonely and working hard. But I am going to visit him today, which is the greatest. I’ll be visiting him on my own for a week while the boys stay with the grands. I will drag him to a movie; we will exchange Christmas gifts; and best of all, we’ll just get to hang out together. I can’t wait.

6

Today is Cricket’s birthday. I’m hopeful about the birthday gift we sent this year; when they visited, Nora (upon hearing that I am a board game nut) told me that Cricket likes board games too. Those of you with board game nuts in your lives might know what she let herself in for; I wanted to know what Cricket likes to play. Well, said Nora, they have Monopoly. And Sorry. I asked whether they had any board games for kids, and she said, “Like Candyland?” I asked whether Cricket likes cooperative board games, and she didn’t know what I was talking about. Oh ho!

There are actually some great board games for kids; my little two are getting The Sneaky, Snacky Squirrel and Don’t Break the Ice from Santa. I sent Cricket two board games; one is a competitive game called Fish Stix and is a sort of dominos variation, and the other is a cooperative game called Race to the Treasure! Since my mom, when she heard this story, also had no idea what a cooperative board game is, let me tell you: in a cooperative board game, all players are working together against the game rather than against each other. “Oh,” said my mother upon hearing my explanation. “Like that island game.” Because she lives with a board game nut, and has graciously suffered through several game nights with me.

I think that I am like most parents in that I want to be able to give my kids the things that I wish I had had as a kid—and I am trying to temper that with my understanding of their actual wishes and needs. I have always loved board games, and I played many games of Candyland with my siblings as a kid (and cheated! I can’t believe they never figured out that I creased all of the face cards), and I loved Clue when I was a little older, and now I am just waiting to hear a boy express the most casual interest before busting out Hi-Ho Cherry-O. Joey has a board game play goal in his behavioral therapy (thus Don’t Break the Ice—he likes it, although he prefers a rousing game of Break the Ice!), and while Kit isn’t quite old enough or temperamentally ready for most kids’ games, he has cheerfully played a few short games of Sesame Street Memory with me.

And now it’s Cricket’s birthday, and it looks like the party Nora threw him was fabulous, and I am so glad to know him even a little bit. Happy birthday, little dude. I miss you.

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