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

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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.

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.