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.

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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.

Brain Scientist

Every few days, we talk to Joey about the upcoming move. The first time that Mr. Book explained that he was going away for awhile, Joey asked “Why?” Now, he just gets withdrawn and angry if we talk about it. Since he produces so little speech, it’s easy for me to forget how much he understands. We’re both sad, of course. But it looks like the Mister now has two jobs waiting for him, which is great. It feels like we should be making maximum use of our remaining time together, but too often we end up just curled up together on the couch, being sad.

I dreamed that Mr. Book died, and woke up sure that the feeling in the dream was what it would really feel like if he died; I just wanted to fall down and stop, because it was all over. It felt like the end of the world. Doesn’t take a rocket surgeon to figure out what that one was about.

I told Nora and Ruth, and Nora responded (politely, and friendly . . . ly), and Ruth did not. Perhaps I’ve been conversing with the wrong person all along. At any rate, I don’t think there’s anyone else I have to tell.

Meducation

So, a new feature to help get me to post with some regularity: Mondays, I’m going to talk about Homeschooling. I’m missing the traditional alliterative quality of such features—Meducational Mondays just lacks that certain something (namely sense). I have been planning for a long time to start home preschool when Joey turns two, but dithering about whether to start right at his birthday or wait until after the holidays. Then I had a series of conversations that led me to check the two-year milestones and see that he’s significantly behind in language, after being well ahead of the curve right up until Kit was born. So we’re starting just a hair early. For now, I’m picking a theme for each week and then several activities for each day, trying to include an art activity and a book; we’re only doing an hour a day, and that is already quite a strain on his attention span. Day 1, last Monday, was pretty rocky—he is not excited about doing anything he is asked to do, and he hadn’t slept well the night before. I knew going in that he knew at least red, blue, and green, but now think that he knows all the colors; for one activity, I had a book of colors and for each page, was encouraging him to hand me the plastic link that was the same color as the color on that page (using those plastic links that come in chains as baby toys). For every page, he handed me every single wrong color and left the correct color behind—he was making a point but also accidentally letting me know that he is able to match the colors. Things did improve somewhat as the week went on, especially since Friday I could see that he was tired and kept things very casual.

I’ve got sort of a philosophical dilemma when it comes to teaching Joey. On the one hand, I want him to be able to be as free as possible to do whatever he likes in the only years of his life during which that’s remotely possible. On the other hand, doing so isn’t making him happy, and he’s falling behind his peers in terms of knowledge and skills.—Okay, that makes it sound like I turn him out to set fires in the back yard all afternoon, which is not the case. He has quite a set of rules and boundaries that we consistently enforce, he is disciplined by the loss of things he is persistently abusing and/or time ins. He wears clothes and eats regular meals. We read books every day, but he chooses that. Sitting him down and telling him that now he has to color makes me feel guilty. But as I say, he’s not very happy recently (by which I mean for the last five months), so I’m certainly willing to make a change. Will schooling make him happier?

Doors II

It’s strange, finding myself in this arc and not knowing where exactly I fall. At first, I thought that Joey and Cricket couldn’t be more different, couldn’t even see a resemblance between them; anyone who has seen pictures of the boys will know how pathetic this was. Then I realized that they looked and sounded quite a bit alike, but knew that they were otherwise nothing alike—their personalities and their tastes seemed like night and day to me. And now I can see Joey doing Cricket things, and while some of that is probably universal little kid behavior, not all of it is. I don’t think that most of it is. They still look somewhat different (Joey is startlingly pretty in a way that his brothers are not, although I think all three are cute kids, if Kit might need some time to grow into his ears. They’re his granddad’s ears, and his granddad grew into them beautifully), but they look like brothers, and (based on what I’ve seen when I’ve seen Cricket) they have any number of nonphysical things in common. And now we have less access to Cricket than we ever have before.

Ruth has taken Skype off the table; this time last year she was talking about when they would visit this year, and now she isn’t talking about visits at all. The Mister and I aren’t optimistic that a visit will happen. When we write, we don’t hear back. Joey is still a little young, but looking at him, I want to help him build a connection to his older brother now—and at the same time, I don’t, because I don’t want to set him up for hurt and disappointment. If I don’t hear back from the Emerald City, that’s lousy, but Joey isn’t able to understand why someone wouldn’t be totally enchanted by him, and I’m not ready to provide him with that kind of character development. It’s too sad, and he’s just a little dude. I still mention Cricket once in a while, and show Joey pictures less often than that, and Joey mostly ignores me. I am almost relieved.

Joey is changing my feelings for Cricket. I think about that faraway kid with more fondness, seeing him reflected in this littler kid whom I’m so crazy about; I miss him. Doors inside me are opening; doors up north are closing. Watching the relationship evolve is just sad and sad. But we’ll keep pushing letters under the door.

Happy Merry

Since we don’t know much about Cricket’s tastes, and since we’re also having to appeal to his mom, I’ve got a sort of checklist I use when picking out a gift for him.

1. Ruth’s Rules for Presents: Nothing with Christian elements, nothing concerned with Christmas, no toys of violence, no licensed characters
2. Does it make noise? Giving really noisy gifts seems like bad parenting karma. There’s a toy guitar that I badly want to give him (It’s shaped like a dog! I believe that he likes both dogs and guitars!), but it is an electronic, noise-making toy.
3. Does it require the involvement of another person? Last year we got Cricket an aquadoodle—a gift I was quite proud of, since all the toddlers I know are mad about them—and I am pretty sure that it was never taken out of the box (I asked a couple of times over the course of a few months, and as of this spring, it was still in its original packaging). Ruth would have to fill the stylus with water in order for Cricket to draw with it, and that is not a great thing to count on.
4. Is it aimed specifically at boys? Cricket loves cars and trucks, and has tons, but it’s clear that his mom prefers toys that aren’t Boy Toys.

So I come up with five or six possibilities, I run them by my husband, and we spend some time eliminating choices until we’re down to one. This year, we’ve gotten him a toy vet clinic that looks like a pretty good time. Certainly Joey covets one. Of course, I feel a little weird about getting them the same thing—if I pick something great, surely I should consider letting Joey (and eventually Kit) in on the greatness. But is that creepy? I hope not. But then again, so far I have resisted the urge to get copies of the things we send north for Joey.