Kate Says

One other thing (and I hope you don’t mind the unsolicited advice): Even while you are in the assessment process, talk to a developmental pediatrician (or another autism specialist) about the pros and cons of home schooling vs. preschool. On the one hand, home schooling affords Joey to have tons of individual attention and help from you. On the other hand, since people with autism often struggle the most with social skills, he might really benefit from consistent, regular interactions with peers. Also, if you work on social skills with Joey at home (and I would recommend it; there are many wonderful kids’ books and activities designed for this purpose), a preschool environment would enable him to practice the skills he is learning. Too, the teachers could give you regular, objective feedback about how he is doing, and then you could use this feedback to identify and target specific skills or areas where he needs extra help.

One of the things that I’m grieving (current stage: anger, mostly, with some bargaining and a smidge of depression) is not being able to parent the way that I had wanted. (For the purposes of this entry, I am going to assume that Joey is, in fact, autistic: the other day, I was listening to an audiobook memoir of parenting an autistic son, and when she ran through the diagnostic criteria, I just started banging my head against the refrigerator. If those are still the criteria, yeah, he’s totally autistic.) I’ve been reading about autism with just about all of my free time recently, and it seems clear that it will be best for Joey if he is in a hugely structured environment, with ABA therapy and me reinforcing that all the time and speech and occupational therapies and probably a preschool at some point. I can’t do the “Let’s read good books and expose you to information and groovy experiences and let you learn” because he’s not going to just soak stuff up. We’re going to have to stuff him with skills like a turkey, apparently. And of course I’m on board to make that 180, because I want him to do well and be happy and able—but it pisses me off a little, in a self-pitying and selfish way, that I can’t give him the free-range childhood that I wanted him to have.

What does this mean for Kit? Obviously I’ll parent them differently, even more differently than the inevitable “two different children with different needs” differences that I had anticipated, and whoa, I think if I stuff one more “different” into this sentence, I will win some kind of award. When I was pregnant with Joey, I decided that if he was born with special needs, I wouldn’t have any more kids; I have heard from siblings of special-needs people how hard that role can be. And here we are, and I can’t for a minute regret my Kit, because he is a joy and absolutely essential now that he’s here. But how do I do this? Good thing that I’ve got some time to figure this out. Clearly I’m going to need to make time alone with each of them, but that was already true.

I got a couple of things to go in the boys’ Easter basket: a board book, a thunder tube, some bubbles. In a day or two, we’ll pick up some candy. Time just keeps marching alone, even with me staggered.

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What I Didn’t Want to Hear

I started to write a reply to Sara’s comment on the last post, and it grew out of control, so I will make a proper update. First off: Joey’s eyes have not been checked, although it seems like he can see things far away (planes [I know that there is a sound to tip him off, but it’s not a very localized sound, yet he can spot the plane and follow it with his eyes], the moon, me from a block away without anyone pointing me out). It might very well be worth having that looked into. He’s never had an ear infection or fluid in his ears, happily. And in addition to my depression, I’m diagnosed ADD—I know there’s a heritable component to that, and my brother has the same diagnosis. But Joey doesn’t seem hyperactive, and he doesn’t have any trouble focusing; he’ll contentedly, silently play by himself for long stretches of time.

He’s had one session of speech therapy (just a getting-to-know-you introductory play period), and the speech therapist—while very clear that she cannot diagnose, and that he needs to be evaluated—thinks that he’s autistic. Looking up a list of characteristics of autistic toddlers was certainly dismaying, and I so much want it not to be autism that my thinking has been somewhat distorted around the idea. An example might be useful. When Joey gets upset or excited, he flaps his hands. But when I’ve been asked in evaluations whether he flaps his hands, I have said no, because I know they’re asking about autism, and this isn’t like autistic hand flapping, it is totally different and not like that at all. Except, I finally realized, it might not be some totally separate and unrelated hand flapping. It could be exactly the same thing. I’m working on getting my head on right. But my sister visited this weekend, and mentioned how excited Joey got over gummi bears at Christmas, and mimicked the hand flapping . . . and I kind of freaked out. Silently! And no one in my family thinks of autism when they see him doing it—it’s just Joey doing a cute Joey thing. Or maybe it isn’t.

Joey doesn’t seem sad, and he doesn’t cry much—he just doesn’t seem to give much of a damn about anyone but me. He doesn’t point, shake his head, or wave. He doesn’t imitate us. And on and on. I kind of don’t want to list them all again right now. But we have an evaluation scheduled for April 3, at least. In the meantime, the speech therapist has suggested that we sign with Joey, as many autistic kids do better with sign—this is how she explained her advice. Joey’s grandparents have ordered us some Signing Time dvds, and in the meantime, I’m using online sign dictionaries to add a few signs at a time; I’m up to <all done>, <sticker>, <mother>, <father>, <hungry>, <eat>, <cracker>, <tired>, <silly>, <bed>, <alone>—as in, “Leave the dvd player alone!” Of course, it’s hard to get him to look at me, but worse case I have always wanted to be bilingual, and really learning ASL would be great even if it turns out that Joey doesn’t need it.

I appreciate all the thoughts and prayers, more than I can say.

Talk to Me

We finally had Joey’s speech evaluation . . . sort of. Joey absolutely refused to cooperate with the therapist: he shouted; he wept; he threw things. This was not a surprise to me—the surprise was that some children his age would be willing to point at the bird (and so forth) when prompted. Another mother suggested that U ask to have him evaluated at our house—but I’m sure that the results would be much the same. After all, this is what happens when I try to do preschool things with him. Is this not normal?

At his last appointment, Joey’s pediatrician asked whether he is an unusually difficult child. I have no idea. How could I?

The speech therapist (who works at a center that serves the needs of children with special needs of all kinds) told us that there would be no point in getting Joey speech therapy, because he is too uncooperative to benefit from it. She said that we could have him reevaluated in a few months, if we wanted, and told us that we should talk to him about what we’re doing during the day in the meantime. I weakly told her that we do that already, and then we drove home. Mr. Book mentioned that for almost a year now, he has worried that Joey might be depressed.

At one point, when I was in college, my mother (who was reading When Someone You Love Is Depressed at the time) called me and blurted out: “Susie, I think you were depressed as a toddler!” I told her that while I don’t remember, yeah, that sounds right. My husband, as young as four years old, was prone to long stretches of seemingly unprovoked crying. His parents would ask whether they could help, and what was wrong and he would say “No, it’s just my problems.” We’ve both struggled with depression for most of our lives, is what I’m saying, and so it shouldn’t have been such a shock to hear and see that Joey might have inherited more than his father’s pretty blue eyes. And my strong desire to protect Joey—much stronger and less rational than my similar feelings concerning Kit—makes more sense when connected to a fear I was not articulating even to myself.

I am fortunate to be a part of a diverse and excellent parenting group which started elsewhere and now lives on Facebook. After the failed speech evaluation, I finally talked in detail about Joey—and moms of autistic children bluntly, gently, told me that I needed to get him evaluated for more than his speech. I was given phone numbers and handholding.

And then the speech therapist called and left a voicemail. If I can read between the lines a bit, she sounded like a person who had gotten a scolding; she said that the director of the clinic wanted Joey to be seen, and as soon as possible, and that she had a parent-report evaluation to perform when I had the time. I called her back the next day, and answered a long series of questions that started “Does Joey . . . ?” and “When Joey was a baby, did he . . . ?” Almost every “correct” answer was yes—I could tell that the evaluation covered deafness, autism, and developmental delays of many kinds. Joey is not deaf, and so I got those questions “right”—but too often I was answering no to the others. “Does Joey imitate you?” “Does Joey engage in pretend play?” “Does Joey take an interest in other children?” No. When she was finished, there was a follow-up question: “Have you had Joey evaluated by a behavioral psychologist?” No. “I would very strongly recommend it.”

Today we are seeing Joey’s pediatrician to get a referral to a behavioral psychologist.

Missing Mr. Book

Mr. Book is in the Midwest now. I’m very tired, but I think I have the better end of this deal; I get to spend my days with the boys. Still, Kit is going through a phase of wanting to nurse roughly every forty minutes at night, and I’m feeling pretty run down. Too, I keep expecting to see the Mister when I enter another room, or when he wakes up from his nap. I keep missing him, somehow, but some part of my brain has not registered that I’m not going to see him for a long time. At the same time, I’ve started making plans for a package to send when his birthday rolls around in April.

Joey is angry at his dad, and is working things out in his own toddler way. I was texting the Mister and Joey walked up to me, so I told him that I was using the phone to talk to daddy—so he said “Hey,” and then later, came up to me and said “Hey, Dada”; I asked whether he wanted to call daddy, he said yes, and we called. There have been a few speakerphone calls between Joey and his daddy, and Joey has already gone from pointedly shunning the phone (while listening intently) to quietly saying “Dada.” We’re planning to Skype for the first time this afternoon. I’m hopeful that it will be a good experience for Joey.

Mr. Book is pretty sad, but he’s already found a job and already been of help to his mother. The plan is basically working. I’m sending him pictures of the boys every day, and of course we’re talking.

Discreet

I put a short video of Kit nomming on my arm up on Facebook; Ruth commented, saying that Cricket wanted to know why Kit was chewing on my arm. I answered, he asked another couple of questions, I answered, I sent a text with more information, and Ruth texted me a couple of times about Kit’s resemblance to and differences from Cricket. It’s nice that when Ruth or Cricket feels like reaching out, that’s easy to do, and we’re easy to get ahold of. I am trying not to focus on my resentment of the fact that that accessibility only flows one way.

Today is Joey’s evaluation by a speech therapist; I’m somewhat anxious, but glad that it’s finally happening. The idea that Kit or Joey might be behind Cricket in any way makes me incredibly defensive; that is, of course, unfair to all three kids, and I manage to (I think) to keep it behind my eyes and on the blog. The ugly fact of the matter is that Cricket’s moms have more money than we do, and Cricket has had some experiences as a result (such as a great deal of travel) that Joey and Kit haven’t. Ruth has seemed delighted that Kit and Cricket seem to look more alike and be on more similar developmental paths (when either of them is compared with Joey, I mean)—I have tended to find those similarities stressful. Not Kit himself: the kid is a joy, sweet and brave and capable. But Ruth’s being pleased apparently pinged something inside of me.

Other women have written more and more eloquently about the need for birth/first/natural parents to be out about their status—as the years go by, I am more and more closeted, to the point that none of the people in town who aren’t my immediate family know about Cricket. I’m not ambivalent about that decision, but I keep making it, so clearly I would rather not tell anyone that I placed. But when I think about it, either option is lousy. Either I tell, and it’s an endless series of small injuries—I am volunteering painful information and signing myself up for conversations that I don’t want to have, as well as (I’m certain) alienating a number of people—or I don’t tell, and there’s this possible burst of pain and disclosure like a piñata when Cricket is actively a part of my life and I need to pave the way for his meeting the people I know and going to the places I go. I am certain that the need will not arise in this town; odds are good that it won’t be an issue in the Midwest town we’re traveling to, either. I have no birthparent pride; I have birthparent shame and bitterness and regret. I don’t talk about it in my real life, I don’t want to talk about, and I don’t see a need to talk about it, except in some vague raising awareness kind of way that I am frankly not interested in.

But the door is always open to my being outed—Ruth chatted away on my Facebook page about how much Kit looks like Cricket, and most of my Facebook friends, if they saw that, must have wondered who Cricket is and why he looks like my son. I could ask Ruth not to do that; I am not going to. Did I stare at her first comment and think about the moms I’ve been getting to know in town seeing that? I did. And then I answered her and decided to just let whatever happened happen. No one has yet asked me.