Endure for a Night

Day 2

susiebook — Mon, 13 May 2013 13:57:14 +0000

Joey has started occupational and behavioral therapies (speech therapy starts later this week). Occupational therapy was great; the woman providing the therapy is one of the people who assessed him, and she’s still wonderful. Most of the things she wanted him to do were things he enjoyed, although he was grouchy about being asked to do things—but he clearly enjoyed himself, and he wept a bit when she left. ABA was a different story. Although no intensive behavioral therapy has started (the therapists are trying to get a sense of what he’s like at where he’s at, first), they tried a couple of small things with him that he HATED. They brought two small containers of bubbles with them, and Joey wanted to carry them around wherever he went. Every so often, the ABA supervisor would say to him “In three seconds, it’s teacher’s turn for bubbles! Three—two—one—” and then she would take the bubbles from him. He would grab for them, and she’d say “In three seconds, it’s Joey’s turn for bubbles!” And so on. She also pushed him to ask for more bubbles to be blown instead of just flapping his hand at the container and whining. This unbelievably cruel treatment (if you ask Joey!) had him hiding from them, trying to get me to pick him up and carry him away, and, by the end, tantruming and weeping. My understanding is that kids do mostly hate ABA—if they didn’t, they wouldn’t need it. But by the time they left, he was exhausted and glad to see the back of them. I don’t think he’ll be pleased to discover that they’re coming back this morning. . . .

My Kitten

susiebook — Thu, 09 May 2013 11:43:51 +0000

I want to tell you about Kit. He’s not having any crises or anything, so he’s been less in the news, but he’s super great, and you should hear how he’s growing. He started walking at nine months, and now, at eleven months, is practically running; he’s at that stage where he thinks that naughtiness is hilarious. And you know, when he grabs my cell phone and starts his waddling run away, giggling hysterically, I pretty much agree with him. He’s a gigantic, outgoing, cheerful kid—he will saunter up to Joey, grab the front of his shirt, and start trying to snatch the cookie out of Joey’s hand. He is so physically confident (and Joey so frequently passive) that he’s able to manhandle his older brother pretty well. I intervene a lot, and both boys get lots of talk about and demonstrations of gentleness. But Kit never seems to mean any harm; he’s enthusiastic, and he doesn’t know his own strength.

I’ve started planning Kit’s birthday party (June 9!) and am hopefully that we might actually have some little kids attending, now that I’m slightly more active in the moms’ group. I even have a dopey pointed birthday hat for him to wear. Mr. Book will be here, and I can’t wait.

Kit loves to play hide and seek; it started as peek-a-boo, but now he wants to crawl away and hide behind something (because it’s funnier if he crawls, I guess) and then pop out at you—or, in the latest version, go into another room and have the two of you take turns going in to surprise the other one. It’s more fun than it probably sounds. He is desperate to eat chalk, and he loves baths and showers so much that he will stand outside the stall and yell at you should you try to shower without him.

lisaanne119 comments

susiebook — Thu, 02 May 2013 02:58:42 +0000

“I rarely comment, but wanted to tell you how intrigued by the twist in your story that this blog is now following.”

Early this year, I had been wondering whether EfaN was morphing into a straight-up mommy blog—and thinking about what I wanted it to be. After all, adoption contact has been less than a full blog’s worth, you know? As you can imagine, the dramatic irony here is just killing me. Don’t worry, Susie: your blog, it turns out, was just being set up for new and exciting changes. Oh, and your life. And your kids’ lives.

During that Skype call, Cricket reached out to Joey several times, talking to him and trying to get his attention—and Joey completely ignored him. And that’s everybody’s experience with Joey, but it still made me anxious and self-conscious—but Cricket didn’t seem too bothered. I am, however, starting to adjust to Joey’s new label; I no longer want to avoid telling people, for example. Our next-door neighbor is a pediatric speech therapist, and my mother had asked her long ago about Joey’s speech—I thanked her, belatedly, for some handouts she gave me, and she offered to give Joey an informal assessment if I want. I told her that he’s actually had a formal assessment now, and the results, and her reply was a much sweeter “Yeah, I kind of thought so.” Every little revelation that Joey has been telegraphing this for ages in a language I didn’t understand feels like a sucker punch. Pushing him around on a scooter board the other day and then encouraging him to try on his own—and seeing him instead flip it over and sit spinning the wheels—I understand that differently now, and it’s bittersweet. I’m glad that I know what’s going on.

“This Is Ocean”

susiebook — Mon, 29 Apr 2013 13:56:58 +0000

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 and ) and some that he had made up—like , which looked a lot like the ASL for And , 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

susiebook — Fri, 26 Apr 2013 03:36:50 +0000

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

susiebook — Wed, 24 Apr 2013 14:52:10 +0000

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

susiebook — Mon, 22 Apr 2013 13:49:04 +0000

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

susiebook — Tue, 16 Apr 2013 21:47:45 +0000

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

Protected: Our Easter

susiebook — Fri, 12 Apr 2013 13:57:13 +0000

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Brotherly Love

susiebook — Wed, 10 Apr 2013 13:38:59 +0000

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.