Water Level

I’m in over my head right now—there is a lot happening with Joey, and I’m overwhelmed and stressed out and sad. So I’m not writing. Unhelpful.

Joey is going through the process of being evaluated by the school district to determine his eligibility for special education. I had a tiny internal panic the first time that a school administrator explained that they are taking six weeks to determine “whether he is eligible for services” as well as what services he might, hypothetically, be qualified for; his service providers all assure me that he will qualify, but in the meantime, I can’t quite accept their reassurance and instead lie awake at night wondering what would happen if he didn’t get speech therapy ever again. We do know that he will continue to get ABA, behavioral therapy, at least until he turns six, for which I thank God. His health insurance has been shut off again, and I have reapplied, but he needs more shots and a TB test before he can start school.

I don’t really talk to the other moms at Joey’s ABA group; I am the only poor woman, and the only one wrangling another child. But last week, one of the mothers found herself with no one else to talk to, so she came to join me, Kit, and a woman whose son was attending for the first time. All three of us have autistic preschoolers, and our sons make up a spectrum of their own: Luca is extremely high functioning, speaking in sentences and not chewing his hands or spinning in circles; Joey, of course, spins, flaps his hands, mouths things, and speaks in a double handful of poorly articulated single words; Alex does not speak at all, does not seem to register the presence of other human beings except as large environmental obstacles, and eats only three foods. Luca is turning three today, and has been denied further services; his mother is appealing the ruling, and we talked a bit about the process of evaluation. She said at one point, “I can’t imagine where they would go to preschool!” She named a handful of schools in the district–this one doesn’t have preschool, and that one doesn’t have preschool. . . . I said, hesitantly, that Joey is having his adaptive PE assessment at Blackberry, so perhaps . . . ? “Oh,” she said, “But Blackberry is all special ed.” And I didn’t know what to say anymore because, lady, my kid is going to be in special ed—and if yours isn’t, that’s probably why they’ve decided not to offer him that service, right? Luckily, awkward silence is totally my thing, so I didn’t say anything baffled or hateful; I just focused on Kit for awhile.

Both other mothers spent some time staring at Kit and commenting on how “typical” he is; it would have sounded pretty weird to outsiders, I guess. “Oh, he has such great joint attention! Did you see when he . . . ?” Both of those women have one child apiece, and there was a little longing in the way they looked at the Kittlebug. They both talked about choosing not to have other kids because they didn’t think they’d be able to deal with having a second autistic child—and I’m right there with them. I feel lucky that we had Kit before we knew about Joey, because I can’t imagine my life without the both of them. But it scares me badly to think that Kit could still regress, start losing words in a couple of months and then stop looking at me.

Here and Gone Again

Mr. Book’s visit was super great. He brought germs with him, and we all got incredibly, disgustingly sick after he was gone, but it was great while he was here.

We took the kids to Disneyland: me, Mr. Book, and my parents. It was a pretty great time—the kids enjoyed the storybook rides and the churros very much, and my parents took charge of them for a few hours so that I could wander around with only my husband. Aside from that big event, we mostly just hung around with the boys during the day and hung out with each other in the evenings; the boys were immediately thrilled to see their dad, no warming up needed, which I was happy to see; it makes me think that we’re doing an okay job of keeping the three of them connected even at a distance.

It’s hard to write about his visit because I’m so sad that he’s gone. After a few weeks apart, we all settle into a new normal—but when he’s just left, it’s like an open wound. I miss that dude an awful lot.

Just as I think I’m going to get caught up here, life keeps rolling on. Which is totally good news and all, but means that it’ll probably be another couple days before I talk about the Mister’s visit.

Joey made this spider at Buddies!

Joey made this spider at Buddies!

As it happens, I don’t need to try to bully Mariposa this afternoon; yesterday I got a call from a speech therapist who works from the school district, and she and a school psychologist and maybe some other people are going to come out a week from today and do an intake assessment, set dates for other assessments, get to know Joey a bit, and talk to me about our timeline. The ST assured me that everything will be completed by the time Joey turns three, which I was glad to hear. She asked a few questions about Joey’s progress and about the services he is currently receiving, and I am going to email her some documents before our meeting.

I fired Joey’s speech therapist not long ago; I should have done it months ago, but better late than never, I guess. As soon as he started to see his new ST, he started to make gains in speech. At this point, if he wants something, he will if prompted word by word say “I want more milk, please”; this sounds in practice like

Susie: I

Joey: Ah

Susie: Want

Joey: Wahn

Susie: More

Joey: Moa

Susie: Milk

Joey: Mik

Susie: Please

Joey: Peas

This sort of thing is clearly difficult for Joey, and he finds it tiring and frustrating—but he couldn’t do it at all a month ago. His new speech therapist uses physical prompts for speech, which has led to Joey occasionally doing things like pushing on his own cheeks in order to say “juice.”

Joey went to the Buddies group again yesterday, and while he initially stopped crying earlier than he had the first time, the group read a book that included the word “mama” and Joey absolutely fell to pieces. I gave him a hug when they were finished with circle time (aka weeping corner), and he seemed okay after awhile. I don’t want to send my baby away, even to school. He’s such a little dude!

In the meantime, Kit is stronger, more graceful, and more assertive than any of the kids in Joey’s group, and when they’re all playing together before the session starts, I have to keep him from just taking over other kids’ play. Kit is in kind of a rough patch right now, by which I mean that he spends a fair portion of every day screaming at me and trying to hit me. I’m trying to work with him and let him have input into the course of his day; last night, I asked him whether he was ready to put pajamas on and he screamed “NO!! No, no, no, no, Noooo!!!” So I said, Okay, take five seconds and get ready—and then I counted out the seconds aloud and then told him that it was pajama time. But really, he has almost no say in the way his days are going to go, and I totally get how frustrating that must be. Joey gets more attention than he does, and many of the inconvenient things that Kit has to do (e.g., hang out in a waiting room for two hours each Tuesday and Thursday) are because of Joey. At least when Joey is going to school in the mornings, Kit will have some undiluted mama time. Maybe we can do something fun. I like the idea of trying to put him into soccer in the spring; I didn’t really understand what was meant by the term “natural athlete” until I met my youngest son. As teary-eyed and worried as I get thinking about Joey going to school, I think both boys will benefit from having some time away from each other. I hope.

It’s Official

It’s been awhile, huh?

It’ll take me awhile to account for the three weeks, but in brief: we went to visit my sister Kate for a week, and then had some intense times here for a week, and then Mr. Book came for a week.

It was lovely to see Kate; she’s a warm and dedicated godmother to the boys, and flew us out in part because she wanted to build her relationship with them. They warmed up to her quite a bit over the course of the week, which was lovely to see. She also bought them overalls, so they’re extra snazzy little dudes this fall. Of course, it was over 90 yesterday, so it doesn’t feel much like fall yet. But in a couple of weeks, I’m sure we’ll be there.

My brother lives with Kate in the Midwest; he’s still on the kidney transplant list, and my mother has almost completed the process to become a donor for him. In the meantime, he’s doing dialysis every night. He loves his little nephews, but he’s obviously uncomfortable with little kids—he holds Kit as though he might at any moment explode. Kit has responded to his discomfort with a major charm offensive, going out of his way to grin at and flirt with his uncle.

The morning after our return to California, Joey was assessed by a psychologist and diagnosed with autism. That felt pretty terrible, although it means that Joey will continue to get behavioral therapy (ABA) through the state—the effects are good, even if the news is lousy. In the meantime, Joey is supposed to start going to a special education program at a local school when he turns three . . . but I haven’t heard anything from the school district. I asked Joey’s caseworker, and she said that I shouldn’t worry, that sometimes it just takes time. I have a meeting with that caseworker, Mariposa, on Wednesday, and will try more forcefully to get a phone number of someone in the school district whom I can call to get things moving. Joey will turn three in six weeks, and while on one level I wouldn’t mind if he didn’t actually start school until January, that would mean his going without speech or occupational therapies for more than a month.

When I found out that Joey would be transitioning to school, I asked his ABA supervisor, Jennifer, whether he might be able to join a group they run for kids up to 36 months that is sort of like two hours of preschool twice a week; it’s called the Buddies Program. Joey had his first day of Buddies on Thursday, and he cried and cried—Jennifer and the woman running Buddies each separately pulled me aside to tell me that it’s like this for all kids at first, and don’t worry. Joey calmed down once I was out of sight (in a waiting room, listening), but when I heard them practicing trick-or-treating I stuck my head out to see, got spotted—and started Joey weeping again. Poor little dude.

I want to talk more about this, but ABA is about to start. Wednesday, I’ll write again.