“This Is Ocean”

Skype was great! I was nervous going in—I hadn’t seen Cricket move or speak in a year—and he looks so exactly like a four-year-old version of my husband with my mouth. (I like my lips, and am pleased to have passed them along.) He talked about scuba diving, and showed us both the signs that he’d learned in preschool (like <I’m running out of air> and <I’m going up!>) and some that he had made up—like <octopus>, which looked a lot like the ASL for <butterfly.> And <ocean>, which Nora thought that he had made up, but which actually looks like ASL. He’s a sweet, chatty kid, and he showed me his LEGO with a great deal of enthusiasm. Kit played peekaboo with Cricket and Nora—he likes to hide and pop out while you say things like “Where’s Kit? . . . There he is!!” So they covered their asked, wondered aloud where he had gone, and then uncovered their eyes and said “Peekaboo!” and after a couple rounds of that, Kit started hiding when they covered their eyes and popping out when they said peekaboo. It was adorable. Joey was interested until he saw that his Daddy wasn’t on the monitor—after that, I kept him around with yogurt drops.

At the end, Nora said “Let’s decide to do this for sure once a month—and try to do it every couple of weeks.” So much more than I expected; I’m delighted.

Mariposa

Yesterday I finally met with Joey’s case manager Mariposa. She said that she’s going to schedule his psychological evaluation as soon as possible—which is what I was asking for, so left me surprised. She was nothing but friendly and helpful, and is also setting up in-home services for Joey; I hope things move quickly, now. Since he’s already twenty-nine months old, Mariposa is also going to set up a meeting with the school system so that Joey can be evaluated by them—if he is diagnosed autistic by a psychologist, he won’t end up need the school system yet, but if he isn’t, at three he will start receiving services through them.

 

Easier Not To

I have a long post in my Drafts folder talking about how much I don’t ever want to tell Ruth and Nora about Joey’s diagnosis. I started it more than a month ago and keep going back to add to it, because I so, so much do not ever want to tell them. I am not interested in hearing what they have to say, and I don’t want them to treat my sweet kid differently. I’ve also felt angry at them, and that makes me not want to open up to them. But Mr. Book has thought all along that we should tell him, and I mostly know that he’s right but keep saying that I don’t care. He has given me veto power, so I’ve just been hanging out with my vague plan to not tell.

But then Ruth asked me, after two and a half hours of Facebook chat, a few questions that led me to a crossroads: Do I evade, lie, or disclose? I was angry that I had to tell her, but felt that I had to—evading would have gotten extremely weird very quickly, and I don’t want to lie. So I told her. She just asked a few questions—she wanted to know how badly off he is, but was trying to ask politely. She wanted to know his prognosis, and no one does. After we were done talking, I sent a message to Nora to let her know, pretty bluntly: but I don’t know what the flow of information between them is like, and I don’t want to have told one of them and not the other.

Ruth did tell me that Cricket has a cousin with disabilities, and that he already has some language around the idea that some people’s minds work differently, and some people’s bodies work differently.

My Top Priority

I sent a message to Ruth and Nora.

How’re things up north? We’re having some rainy weather, which always makes me think fondly of the Pacific Northwest. It’s been a few months since I asked about a visit this year, and I thought it might be useful for me to let you know what I’m thinking.

My top priority is for the kids to know each other and have a relationship growing up, and that isn’t happening. What I would like is for them to be able to Skype, and for you guys to visit us this year some time. I know that things haven’t turned out the way we might have predicted, and that sometimes we get busy and things get hard, but this is really important to me—and the hard and busy times are going to keep rolling around. I’d like to find a way to connect the boys—and keep them connected—whatever is going on in their parents’ lives.

I’m looking forward to hearing your thoughts. Hope you’re well.

And the same day, I heard back from Nora, saying that they want the same thing, and for Cricket to have develop his relationships with me and with Mr. Book, and that they’d be in touch soon about a visit. She suggested times for a Skype date, and we set up a time. Ruth asked to talk on Facebook chat, and we talked for three hours—she didn’t mention Cricket, and I kept looking for an opening to bring him up and failing to find one. It was a frustrating conversation for me. Ruth is having a hard time, and has been having a hard time for a long time now, and I feel compassion for her but also—I feel like she takes advantage of me in these conversations. She needs to vent to someone, and I was not encouraging her to do that with me (saying neutral, pleasant things, mostly)—but on some level, at least, she knows that I can’t tell her no and I won’t go away—and people have been going away in her life recently.

If things were easier in my life, I would have more compassion and more desire to do what I can to make Ruth feel better. But things are hard right now. I came into the conversation tired and sad and worried about Joey and missing my husband, and there are people here in town that I can reach out to and have more of a reciprocal relationship with. The pattern with Ruth has been that she will initiate a big, heavy conversation about her life, occasionally detouring into my failures, and then I won’t hear from her for several months. She still isn’t willing to Skype, and she did mention that she is the reason that visit planning has not moved forward. I have had bad, bad times in my life—my mental health record is full of thick, black marks. I know how that can color everything that happens in your life. But Ruth and I don’t have any history outside of adoption, and the incredible power imbalance seems to make her feel safe . . . but has made me more and more disinterested in a friendship. We haven’t been friends, and I don’t think that we’re going to become friends. And these conversations are too much with someone who isn’t my friend.

That said, I’m not in a place where I can imagine closing off any avenue of contact, however difficult or stressful. But Nora made it clear that they are planning on coming for a visit this year, which is the best news I’ve had in quite awhile.

Keeping Score

I got Joey’s official report in the mail. I was at first frustrated that the plan outlined is just for speech and occupational therapy once a week (each), I noticed that he’s supposed to get his official, serious diagnosis made much earlier than the six months they told me he would have to wait; more like six weeks from now. So this is apparently only a very temporary plan. Now I’m just waiting to get a phone call from his case manager.

Here are his scores. Joey is 28 months old.

Cognitive function level: 12 months

Receptive communication level: 9 months

Expressive communication level: 6 months

Gross motor: 15 months

Fine motor: 16 months

Social/emotional functional level: 12 months

Adaptive/self-help functional level: 14 months

Brotherly Love

After Joey’s assessment, Mr. Book asked me: “Does this tell us anything about Kit?” The answer is no; we don’t know whether Kit is or isn’t autistic, and won’t for some time. I don’t believe that he is—I remember when he first started to coo, and I told the Mister that this cooing thing, which Joey had never done, was really the cat’s pajamas. I’ve been giving him little tests almost every day, and he is acting nonautistic: e.g., I will push a little car along the couch, saying “Arun-run-run!” [this being my rather feeble sound effect] and hand it to him, only to have him push it (upside down) along the couch, going “Rrr!” Joey does not do and has never done that kind of imitation or sound effect. Kit is remarkably sociable and chatty. So while I am going to be watching carefully, my suspicion is that Kit is nonautistic.

Kit has more and more been able to reach out to Joey; he has been giving him admiring looks and laughing delightedly for ages now, but at this point he can gently wrestle with his big brother. Kit is very much the leader in these interactions—he will try to climb onto Joey’s back, grinning and crowing, as Joey goes limp and smiles. The other day, Joey gave Kit a hug: since Kit’s head is at Joey’s shoulder level, and since Joey likes tight hugs, Joey wrapped his arms around his brother’s head and squeezed, resting his head against Kit’s and smiling sweetly. (Kit was smiling, too.) For awhile, I suppose the boys are going to be right around the same developmental level—and hopefully they’ll be maturing together, too.

In One Ear

When the assessors told me that Joey’s comprehension of speech is at a twelve-month level, I wasn’t sold. The speech therapist at the Regional center explained that it seems as though he can understand more of what’s happening at home because he knows our routines. But it seemed perfectly possible that he just hadn’t chosen to communicate his understanding at the assessment. So Thursday and Friday, I tried talking to Joey without signs, gestures, or props: and he can’t understand what I’m saying. If I sign as I say “Are you hungry?” then he will say “Okay!” or run to the kitchen or both. If I just ask, “Are you hungry?” he doesn’t know what’s going on. I spent two days saying everything without visual hints, waiting, and then repeating myself and adding signs and so forth.

They were right. I was wrong.

I can’t wait until our Signing Time dvds get here; even if Joey doesn’t choose to sign, if Kit and I can start signing to him, that clearly helps him to know what we’re talking about. I’ve been looking into ways to learn more ASL (in some ways, it makes more sense for me to try to learn EES, or Exact English Signing, but ASL is a cooler and more widely used language, so I’d rather use that) in a structured way. I can keep adding single signs via the internet, but I’m not going to get a real grasp of grammar or syntax that way. And I know that it would be best if I could learn directly from a D/deaf person. Right now, I’m thinking about asking my parents for an ASL class for my birthday—but that’s, what, like six months away. But in the meantime, I’m going to look for more dvds and ask for book recommendations. The only other person I’ve really talked to who has a young autistic son has decided not to sign with him—and he doesn’t talk. I’m in favor of sign based on a recommendation from the first speech therapist and what I know about sign and D/deaf kids (which turned out to be much more controversial than I would have guessed). I want Joey to learn a language, and any language will make it easier for him to learn other languages. He has been losing words for more than six months now, and his useful vocabulary is down to something like twenty words now (he can also name things that he is seeing in Blue’s Clues). If he can sign, then by all means, let’s sign.

12

Thanks to everyone who has reached out—I’ve really appreciated it, for all that I haven’t responded. I don’t want to write about Wednesday—I want to have written about it already. But there’s only one way to get there, I reckon.

Joey was evaluated by an occupational therapist and a speech therapist; they were exactly the sort of people you hope are working with special-needs kids, sweet and enthusiastic and clearly both competent and wicked smart. They explained that the Regional Center doesn’t try to get kids proper diagnoses until close to age 3, because up until then, they aren’t needed for treatment. In six months or so, Joey will be evaluated by a behavioral psychologist.

It was very strange. Joey was in a good mood and as cooperative as I could have hoped for—the women did things like make loud noises behind him and call his name, which he ignored about 80 percent of the time (this is totally normal for him). They talked to him, they made sound effects at him, and they tried to get him to put puzzles together and put pennies into a piggy bank. They picked him up and set him down; they asked him to help them feed a baby doll. They were very positive and extremely encouraging, occasionally asking me a question or talking to me about what they were noticing. I was totally caught off guard by the revelation that he has low muscle tone—according to the OT, this is affecting all kinds of things about him, from the way he sits to the fact that he’s still so baby faced. When they were done with Joey, the women worked with their notes and some score sheets, and then they talked to me for awhile; I think they were trying to make sure that I wouldn’t freak out when, in a week or two, I get the final report.

Joey is operating at the level of a twelve-month-old more or less across the board. There are six- to nine-month milestones that he is failing to meet; there are areas in which he performs as well as a fifteen-month-old. Joey is twenty-eight months old. The speech therapist asked me whether the speech therapist Joey is already seeing “raised any possibilities”; I said that she had told us that we should have him evaluated for autism. “And now that you’ve read some about autism, did that seem way off base, or like it might be possible?” When I said, tightly, that it seemed plausible, both women nodded vigorously. I think I may have cracked the secret code.

In a week or two, I will hear from our case manager, who will find us therapists who will work with Joey in our home—a friend whose son also had low muscle tone told me that we should expect physical therapy, the OT mentioned that he would get “an intensive program” of occupational therapy, and there will be speech therapy, too.

I am sad and angry and kind of dazed. I feel guilty about not realizing how bad things were—I only mentioned his speech delay to the pediatrician because he had lost words, and because he seemed so young around kids his own age. But I feel so thankful to have my Joey.

The occupational therapist asked me at one point whether he can jump. No, I said, but he really wants to. “We can get you jumping, buddy,” she said confidently. “Oh, yeah.”

Two Days Out

I’m writing this on Easter, although it won’t post until tomorrow, and it’s so springlike here: totally over the top. Downtown, where I’m drinking iced tea, there are petals raining down from flowering trees. Even though it’s Easter, I’m keeping up my guilty Sunday pleasure, taking a few hours away to sit by myself and write. Joey has his evaluation on Wednesday, late in the morning. There’s so little that I can do to affect what will happen there that I am overpreparing in dumb ways, packing a diaper bag with things he really likes (fruit smoothie pouches, Harold and the Purple Crayon) and picking out a comfortable and nice-looking outfit. The only other time he’s been evaluated for anything was the speech evaluation, which involved a lot of shrieking and crying and Joey throwing himself to the floor. I’m told that this will work differently; I hope so. Kit will be staying with my dad, so at least it will just be Joey and me. I had a phone intake interview with the evaluation coordinator at the Regional Center (the institution that will be evaluating Joey), and it was very detailed in some ways (“How does Joey eat? Is he weaned? What does he drink out of?”)—I only really got upset when she asked me whether he has any repetitive behaviors, and she accepted my rambling “I don’t want to say hand flapping, because I know that’s a thing, but he certainly . . . waves his hands . . .  when he’s upset or excited” quietly. When the interview was over, she gave me the “You will be receiving services, surely” version of her introductory talk.

 

I told a friend about what’s happening: that we’re having Joey evaluated for the possibility of autism this week. She came for a playdate on Friday, bringing her two adorable little girls (one of whom is about to be three and the other of whom is five days older than Kit). She asked hesitantly whether this was because of vaccines, which I tried to quickly debunk (later, I posted an article on Facebook about the total lack of connection between autism and vaccines, and she “liked” it). She seemed surprised that anything might be wrong with Joey: sure, he doesn’t talk, but he seems like basically a happy kid—just an antisocial one who likes to run in circles and flip light switches. And he is super great; if you’ve never met him, you’ll just have to take my word for it, but he’s really a wonderful kid. I’m still adding signs every day to use with him, and so today I’ve been able to use Easter, bunny, egg, hide, and find. He’s still not completely interested, but I’m hoping that when we’re able to hook him up with some Signing Time, he’ll start using it with me. He does seem to appreciate some of the signs that I’ve been using for longer (open, gentle, alone, outside, cracker, cookie), and is more likely to act as though he has “heard” them than he is with my words alone.