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.

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.”

My Great Big Gigantic

Joey is about to turn four. His birthday is on Thanksgiving this year, poor lamb, which means that we will be serving soy orange “chicken” alongside the more predictable holiday fare; the dessert options will include Skittles. I started planning a pirate party for him last month—and then I started thinking about a guest list, and got tense. When Mister Book visited last week (which was lovely, and I hope to write about that), I put it before him: Should I have a birthday party for him? I don’t know that anyone would come. If I were confident that at least three kids would come, I would go for it. But. Mister Book and I agreed that we won’t have a party this year, and Joey will neither notice nor care—but I feel crummy about it.

 

Joey’s doing well. One of my most painful memories from the time in which we started to worry about it, got him assessed, and started receiving services is of a conversation with a speech therapist who asked what Joey calls me. Nothing, I said. “Well, what does he do when he wants to get out of bed? What does he say?” Nothing, I repeated. He rattles the doorknob. I hadn’t even realized that this was a problem, and there were a lot of those, and I started to cry—the therapist realized what had happened and hurried to her next question in a not unkind sort of way. I tell you this so that you will know what a big deal it is that he now comes up to me a few times a day and says “Hi, Mima.”

 

I’ve started to pick out Christmas gifts for the kids; usually I’ve got that done by now, but this is the first year that it would be wholly inappropriate to give Joey gifts designed for kids his age, and that’s slowed me down more than it probably should. Joey is not making the progress on his school goals that anyone would like to see, but he loves school—today his class took a field trip to a pumpkin patch, and he had a ball.

 

I’m sorry to have been so gone for so long. I think about blogging often, but that feels miles away from actually sitting down and writing about what’s happening.

Questionable Timing, Susie

I keep waiting to have a really excellent post, but I’ve been waiting awhile, so instead I am just writing here in the middle of the night.

Kit has started to talk in silly voices a lot of the time—this is something that Cricket does. He cannot be pried out of his rain boots with a crowbar—this was true of Cricket for better than two years. There hasn’t been much of this sort of thing between Joey and Cricket, or even between Joey and Kit, because Joey is very much on a different path. But Kit and Cricket look alike, and seem alike in some other ways, and I will be interested to see them together later this year. Kit is mad for puzzles; I am planning to ask Nora whether Cricket is or has in the past been into puzzles.

Joey has finished his extended school year, and is one week into a five-week break; he doesn’t seem thrilled to be off school. I’m trying to get them out of the house most days, but I’ve been depressed and tired, so there have been too many days when we just end up taking a trip to the back yard. This week we have plans for Tuesday, Wednesday, and Thursday; I’m trying.

I’ve just finished a little freelance work, so I’m up after midnight, waiting to be able to sleep. The boys get up before 6 every morning, so tomorrow will not be a super energetic one on my end—note that we do not have an outing planned for tomorrow—but for sure the dudes can swim, and I can drink coffee and daydream about taking a nap.

I’ve struggled with depression for most of my life. I feel grateful to be at a point, now, where I can see the sadness and hopelessness as something that I don’t have to explain to myself or jolly myself out of; I can have those feelings and just try to let them exist without allowing them to rule my life. Some days they steer me more than I wish they could, and almost always they weigh me down, but I can enjoy the kids and give of myself to them and make jokes and read novels and see the depression as sort of running alongside instead of over my life. I’ve learned that when I am especially burdened, I have this different kind of exhausted compassion for the kids’ troubles that is quieter and less pushy than my normal variety, and that seems like a silver lining worth appreciating. Six or so hours ago, Joey just melted down, screaming and shaking and just beyond coping. He had a mild diaper rash, but I couldn’t find any other obvious cause for his distress—but just being held by me without having to endure a lot of stupid questions helped, and a bath helped the rest of the way.