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.

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.

My Baby

Joey is my baby now. I don’t know exactly when it happened, but not too long ago, Kit stopped being the baby. Joey is still taller, but he is behind Kit in just about every other developmental way—Kit is my big boy, and Joey is my baby.

As I write this, I am also browsing the internet to see what to do about diapering Joey now that he’s outgrown size 6; apparently Medi-Cal should cover diapers, but I’m not sure how to make that happen. I have emailed his social worker, but she hasn’t responded. I guess my next step is to talk to his pediatrician—I know that I need a prescription for diapers. I just don’t know what to do with it!

My sister Tammy visited us a couple of weeks ago. We don’t get to see her often, and she’s wonderful company—I wish we lived closer together. She and I sat up chatting and making cookies one night, and it came up that she thinks Joey is catching up to his peers. I tried to explain that no: he is making progress, but the gap between Joey and his typical peers keeps widening. I don’t think it was exactly making sense to her until I remembered that her close friend’s son just turned four. Joey is only six months younger than Leo, I said, and I could see her suddenly really get it, and I keep thinking about the look in her eyes. She loves Joey, and I don’t think that she has an unkind bone in her body—but just seeing her realize that he really is never going to be average—she doesn’t think any less of him, that’s not what I mean, but it was a big realization and I saw it happen and I keep remembering what it looked like.

Joey qualifies for an extended school year; special-needs kids who might lose a lot of ground if they were out of school for the full break get an extra month or so of school. He is at a different school, with a different teacher, but I’ve heard excellent things about her, and he seems happy to go to school in the morning. He and Kit are both going through growth spurts, so he’s sleeping more—or trying—Kit has realized that he can climb out of his pack-n-play, and will starting jumping on Joey and trying to convince him that 8 p.m. (or 9 p.m., or 4 a.m.) is the perfect time for a dance party! Joey’s swimming whenever he gets a chance, and Kit is starting to warm up to the idea, especially after Tammy spent hours playing in the water with him. Mostly he hangs out on the steps of the pool, periodically shouting “I swimming in the pool!” while Joey peacefully paddles around the deeper water.

Joey is going through a period of shrieking more and hitting me more (not hard), but remains a sweet and mellow person who’s going through some stuff right now. I want to write more about Kit, and about Cricket, but I’ll save that and hopefully post again soon.

WAD

Yesterday was World Autism Day, and I’d like, belatedly, to talk a bit about Joey and his autism. I heard a researcher on the radio earlier this week talking about how even in autistic kids who regress, when you look back, you can see signs going back into their infancy; although we didn’t know how to read them at the time, certainly this was true for Joey. Joint attention is one thing they particularly lack—Joey was very rarely willing to look at things we pointed out, or to take an interest in things that we were interested in. Mr. Book and I thought that he just wasn’t interested, and respected that without realizing that it was a problem. As a baby, Joey was much more interested in looking at walls and ceilings than at faces—mine or anyone else’s—I remember blithely describing this to someone before we had any idea. The Mister and I were so willing to accept that he had his own agenda that we never knew that we ought to be worried. Now, in Kit, I see a person with his own agenda who also is socially engaged and attentive to the things that others find interesting; had they been born in the opposite order, we could have gotten help for Joey much sooner. Or, of course, if we hadn’t placed Cricket. . . .

Joey is an unbelievably sweet and mellow little dude. I know that I say this all the time, usually using exactly those words, but it is the perfect truth; everybody likes Joey. He has made almost no progress in speech over the last six months, still using only about thirty single words, and his articulation is poor; he is sensory seeking in just about every way, pressing his stomach against things to feel them especially and drinking unattended hot sauce; he is more and more dancing, grooving and perfectly self absorbed in his happiness; he likes to read to himself, and resents being read to. He’s a peach.

I would make Joey not autistic if I could, but he’s an unbelievable gift, no matter what hardship he has in his life—I am the luckiest in my sons.

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Green Coffee

As soon as we were connected, Cricket burst out: “What’s the funniest thing that Kit has done recently?” Apparently, over breakfast, he and Nora had gone over some things to talk about and some questions to ask—and thank God, because I am Jenny Socially Awkward. As it happened, the night before, Kit has been telling the world’s funniest toddler joke; since Mr. Book was on speaker phone, I was trying to get him to show off, so I asked him what color his (blue) pajamas were. He said “G[r]een!” and signed <green> and then started laughing hysterically when I said “No, they’re blue!” He stopped laughing, said and signed green, and then cracked up again—he did this over and over again, and it was adorable and hilarious. Occasionally he’d throw in a “yeyyow,” but mostly he just insisted that his pajamas were green.

I don’t know whether this is a universal, but I’ve noticed that at least for me, contact with Cricket makes me want to reach out more; we hadn’t had any contact for six weeks before the Skype call, and I was sort of halfway thinking of ways to get out of it. But after we talked, I wrote him a letter—with a shouty Kit suspecting that I wasn’t paying 100 percent of my attention to him, it was hard to talk much to Cricket. Mostly Cricket told me about a book he was reading and showed me pictures (Franny K. Stein, if you’re curious). He played a little with Kit; they pointed to their facial features together. Cricket wanted to give Kit a “challenge” (a math problem, I think) and was a little irritable when Nora pointed out that while Kit can count to 10 and read the numerals 0–10, he’s still a little dude and probably not able to do addition. Cricket asked me whether I drink coffee, and judged my answer weird (correctly; I have rules about coffee being permissible on some days and not others). I miss that kid.

In the letter that I wrote, I talked a little bit about Joey’s occupational therapy and about how many people with autism crave physical input—I included a picture of Joey in the squeeze machine at his OT gym. (I’ll put up a few OT pictures after this post, including that one. Email me if you need the password.) I said that Joey can’t do some of the things that most kids his age can, so therapists work with him to help him learn to do those things. I decided sort of abruptly that I didn’t want to leave explaining autism to Ruth and Nora, because while I trust that they wouldn’t say anything hateful or dismissive, they can’t explain it as well as I can. They don’t know Joey well enough, or autism well enough. And on previous Skype calls (Joey slept through this one), it has been apparent that Nora doesn’t understand where Joey is at. She is friendly, but she gives up when he doesn’t respond the way a typical kid probably would. So in writing to Cricket, I’m going to tell both of them more about Joey’s condition—and hopefully I can get across how great he is.

Turning Over

I hope you all had lovely winter holidays and turns into the new year: Happy 2014! Joey’s been having a bit of a rough time, with all the disruptions to his routine (school starts back up on Monday, and I don’t know whether he or I will be happier), but harder than that has been the fact that he is more and more obviously different from other kids his age; he stands out quite a bit, now. I know that that gap is likely to widen. We’ve had professionals tell me (and I’ve read in more than one book) that some autistic kids are totally indistinguishable from their peers by age six, so don’t lose hope! But that doesn’t seem like where Pete is headed, and I sort of wish that people would stop raising the possibility. If it does happen, I’ll be glad. But if it isn’t going to happen, I don’t want to have my hopes up, you know?

I know other mothers who have children with autism; one woman in particular has a son six months younger than Joey, who seems both more obvious affected by autism and brighter than Joey. It is hard for her to see how unable he is to reach out—but it’s sometimes a little hard for me to see how intelligent he obviously is. Once he starts getting therapy, it seems likely that he will improve enormously. And Joey, too, has improved enormously—and he still has autism. When the school district tested him, they also did an IQ test, and the results were problematic. On the one hand, the IQ score may not have been accurate because of difficulties in taking the test that affect Joey without diminishing his intelligence; on the other hand, the results suggest that Joey will not be living on his own or going to college as an adult. Nothing has been ruled out for him, of course: he’s only three, for God’s sake. But—so I read a couple of Temple Grandin books. And I recommend that to other people, for sure; she talks in detail about her experience of autism. But it becomes clear that she is only able to really explain her autism. Not that I should have expected anything else. But Dr. Grandin talks a great deal about finding an autistic person’s special gifts, and while I know that Joey has gifts, they so far do not appear to be the kind with which Dr. Grandin is most concerned.

I’m grateful for Joey—I hope that always comes across. I’m the mother of a special needs preschooler, so there are of course times when I have a harder time feeling that gratitude keenly; recently, Joey screaming in my face has been especially hard for me to accept graciously. He isn’t doing it to bother me—it doesn’t have anything to do with me—but it’s just wearing on me.

On the other hand, Joey has learned to correctly answer the question “What’s your name?” Small, great things.

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.

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.