Emily Asks

At one point you were talking about writing romance novels, what ever happened with that?

Well, I’ve been slowly writing, but not submitting anything; my top secret plan is to submit the night before we move so that I won’t be able to freak out about it. Too much else to freak out about at that point! But yeah, working on two manuscripts, very different in tone and hopefully readable. Time will tell. Thanks for asking.

Joey got out of the house on Saturday and was attempting to cross a busy street when someone stopped him; I noticed he was gone before fifteen minutes were up, and then Kit and I searched the neighbors’ yards while my mother got in her car and drove around the neighborhood. We’d been bringing in groceries, my mother and I, and we both saw Joey go inside—neither of us saw him slip back out again. I was putting groceries away when I realized that I hadn’t seen him in ten minutes, didn’t find him, told my mom, and we went into full-on freak out. The people who stopped him called the police after finding that Joey couldn’t answer any of their questions, and the officer followed my mother home, asked me what had happened, and seemed satisfied by my explanation. Joey spent the whole afternoon being mad at me for ruining his adventure.

Joey is probably never going to really understand why he shouldn’t just leave the house and go adventuring whenever he likes; he knows that he isn’t supposed to, but that isn’t something he really cares about right now. He also isn’t supposed to lick the furniture, and let me tell you how that one is working out these days. -_- I ordered a medical alert bracelet for him, one made for kids that says “I HAVE AUTISM. MY MOM’S #” and then, you know, the number; a friend of mine says that she has dog tags laced into her kid’s shoelaces, and while Joey doesn’t have any shoes with laces, as soon as he goes up a size I am putting that into place. When we have our own place, we’re putting deadbolts at the tops of outside doors. It scares the crap out of me to worry that I might always always have to worry about Joey getting out—as a twenty-year-old whom no one will know needs help, for example. And I know that I can’t look at four-year-old Joey and guess what he’ll be doing as an adult. But I get scared for him, and for my own future ways of failing him.

Things We Aren’t

We’re going to the Midwest. It’s official. At the end of July, we pack up and go. Less official, but: I suspect that Nora and Cricket are not going to be visiting in June after all. A month out, I think Nora’d be checking in about dates and looking to buy plane tickets. So while she hasn’t said anything, I’m pretty comfortable assuming that she couldn’t get off work.

I’m anxious about the actual process of moving, but feeling pretty good about ending up in the Midwest. We will be further away from my parents, but they have the time, money, and inclination to visit their grandbuddies. We will be in driving distance of Kate and my brother. We’ll be very close to my aging mother-in-law. We’ll be farther from Cricket, but I don’t think that will affect our level of contact. And we’ll be all together as Books, which is just the greatest thing.

Kit is turning three in a month, which is hard to believe—he’s still my tiny dude! But he’s old enough now that he asks for Daddy often, and while Skype is great, it just ain’t enough. And of course Mister Book and I miss each other a lot. Joey is harder to read, but I believe that he misses his dad, and that he’ll start getting close to him again once we’re all living together.

Also related to Kit turning three in a month: I am now comfortable saying that he doesn’t have autism. I guess he still has a few weeks in which he could regress, but he continues to be sociable and very verbal and a person of great passion and intensity. He recently discovered cake, after having refused to try it on every past birthday, and now he’s really ready for his party. He’s also figured out that presents happen when someone gives you something you want, and he has started cheerfully asking for the things that he wants. This is probably completely normal, but our normal is shaped around Joey, who just doesn’t ever ask for something he doesn’t regularly get: “Milk,” say, or “Go outside.” Kit wants trains from his books, and to “be super,” and to fly (not the same thing), and while Joey might want these things, he does not express those kinds of wishes.

I hope you felt well and loved for Mother’s Day.

Bumbling Along

We still don’t know where we’re going to be at the end of the summer. I keep waiting for certainty before writing about it, but the California job possibility moves so slowly that that could easily be another couple of months. But odds are good that we end up in the Midwest.

I’m tired. Kit has started to fill up our mornings with his own social calendar, which for some reason I did not expect, so now mornings are spend doing Kit stuff and afternoons are spend doing Joey stuff and evenings are spent cleaning up and then lying down. Sometimes I play a videogame with my brother. Joey has been waking up in the middle of the night; so have I.

I’ve been trying to decide what we should do about assisting Joey in communicating; I thought that maybe we’d get him an Ipad for his birthday so that he could use Proloquo2go, but then I looked at the price of Ipads and good Lord. There are some apparently good communication aps for Android, so maybe we’ll get him a Kindle. There’s time yet to decide. I talked to his teacher today about transitioning to next year, and she is going to look into what’s available in terms of services where we will most likely end up. I hadn’t realized that there would necessarily be some federally mandated services for a kid too old for Early Intervention and too young for kindergarten—I was hugely relieved to learn that there are.

Kit is talking up a storm these days. His language has rubbed off on Joey, just a smidge—Joey picked up “You help me?” from Kit, and that is a pretty excellent start. If he doesn’t pick up the endless chatter about “Thomas Chickens” [Thomas the Tank Engine], that is okay.

Looking at a Calendar and a Map

I’ve been in a blue mood for a while now. Some of it, I think, is toddler stuff; I am mostly happy with the way that I am parenting Kit, and I’m able to stay gentle and calm. But it wears on a body to have someone screaming in her face so often, and with such crazy demands. He is incredibly charming, and funny, and most of the hours in the day are good—sure, he demands “tummy bears” (gummy bears) for breakfast (unsuccessfully), and refuses to eat supper under any circumstances, but he’s working on that autonomy thing. I have a harder time accepting that hitting me is part of his process, and he is having a hard time accepting that putting him in time out for hitting is going to be part of mine. But we’re working it out.

Mister Book is making one last attempt to get a transfer out to California—if it is unsuccessful, we Books will be relocating to the Midwest at the end of July. When I think about the move, I get panicky and overwhelmed pretty quickly, but I am looking forward to the part where I get to live with my husband again. And having a coparent present would be pretty great; I suspect that I would be less ground down by the toddler stuff if I could occasionally pass said toddler off to my partner. But packing everything up and then dragging two small boys across the country . . . thinking about it makes me just want to lie facedown on the ground. We’ll manage, I know. Baby steps. And even for the move, we are not alone; Mister Book probably won’t be able to come out to help us move, but he can get things ready on that end, and my parents will I’m sure be eager to help us get out of their house (in a loving and positive way, but, well—you know).

I neither dread nor look forward to being back in the Midwest; I started dying my hair an electric red recently, and I guess I’ll probably stop doing that as moving day approaches. I’m going to be weird enough, as the liberal vegetarian lady with the odd sense of humor—I don’t want to make it any harder on the boys than it needs to be to make friends and get along. I worry the most about Joey, and don’t look forward to fighting with a school district about the services to which he is entitled, but I know that will be part of our process. Joey has been so sweet and happy these last couple of months; he’s the reason we’re still in California, of course, but we will make things work wherever we go.

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.

81DPO+m5S8S._SL1500_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.