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.”

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15 thoughts on “12

  1. I’m so glad you’ve found a supportive team who can work with you guys and help you both learn and adapt (and jump!) — but sorry you’re soldiering through this without Mr Book there in-person. It sounds like you have plenty of wonderful mom support already, but if there’s ever anything I can do, don’t hesitate to reach out.

  2. You’re a fabulous mom and human, and it sounds like Joey is too (the latter–probably not the former). Thinking of you and your family from the other coast.

  3. I love early interventionists. You’re a wonderful mom, dear SusieBook. Please do NOT beat yourself up for not having him in earlier because you DO have him in really early. You have been totally on top of this stuff and you have been assertively moving forward. You are awesome.

  4. I am a mom by adoption and I’ve been reading your blog for awhile, but I don’t think I’ve ever commented before. Today I was led by a friend to another blog by a mom whose daughter is autistic. I thought it might be helpful (and hopeful) for you.

  5. I just love the way you ended this post: so very glad that the people you met with today were so encouraging. Early Intervention is a wonderful program….and 28 months is indeed early. What Dawn said: you are an awesome mother and you’re advocating for your wonderful Joey.

  6. Hi, I found your blog because Susan up above linked you to mine. Lots of hugs for you. Whatever happens, whatever the diagnosis is, and whatever comes next, know this: you are not alone, and it’s not always going to feel this way. You are strong, and so is your son. 🙂

    • I started reading your blog and got really emotional; this is a strange, hard time. Your girls are so lovely, and sound so sweet.

  7. I know Joey is not Mara and their histories are so different, but Mara came to us at 36 months with so little expressive language and so little muscle tone and I look back at what a lovable, desperate little blob she was and I don’t regret that it took us longer to make certain progress than we could have because she has a lot of different needs on different axes. Joey has gotten love, support, stability, things that will make such a difference in the long run. I love hearing about what you’re doing with him and I’m so glad there are some great team members on your side.

  8. We just had our son assessed by a speech therapist and occupational therapist as well. And the news wasn’t what all that great. Anyway, I understand some of the feelings you must be experiencing now…as I’m going through them as well.

    Good for you for getting him into be assessed early!!

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