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.

10 thoughts on “What I Didn’t Want to Hear

  1. I’m afraid I thought of autism when you noted he doesn’t point. I’m sorry you’ve got to struggle through this. It’s great you were able to get an evaluation scheduled so fast. Hopefully there will be some therapies that can be pulled in to help Joey – I’ve seen research about kids being taught emotions and empathy for instance through tv and animated mechanics. My thoughts are definitely with you.

  2. This is a lot to process and the wait is so tough, I’m sure. You and Joey seem to have a wonderful connection, and the signing will only add to that, I bet. And maybe you and your parents can sign with Kit when he’s ready. Sending warm thoughts your way…

  3. I’m so glad you have the appointment, so sorry that there’s not more support from speech therapist and Mister Book (well, his support but I’d love it on the premises) and I am sure waiting is really hard. Just another person in your corner, if the one that stretches across the country.

  4. Oh Honey!! I’m glad that eval is soon and that you don’t have to wait and wonder for too long. Whatever the outcome is, please know that there are lots of us here to support you and be here with you.

  5. I hope that all the consulting you’re doing leads you to a group of therapists/practictioners who join you in being Joey’s best advocate and who help support you and Mr. Book as well as Joey…..I am sending so many loving thoughts your way. This is a lot to navigate all at once, and with Mr. Book so far away. Many hugs.

  6. I don’t know what to say besides that I am thinking of you. I tried to leave a reply on your last post but WordPress wasn’t playing nice; hopefully this one will go through. I know this isn’t what you want to hear, or what you want to think, but I also believe with all my heart that knowing is better than not knowing and that early intervention can do amazing things. You can’t “fix” whatever it is that is wrong—autism or something else—it is what it is. But in finding out what is going on now, and doing what you can do about it, you are getting him the help he will need to work with/work around/overcome whatever difficulties he is going to face. This is a good thing. I wish MrBook was there to help you navigate it. I’m sending you good thoughts—strong thoughts—to help you through. xoxo

  7. I read this entry a few days ago, and have been thinking about it ever since. I’m so sorry that you’re worried and anxious and feeling alone. One thing I’ve been wanting to tell you: remember, autism is not like diabetes or cancer: a discrete thing, you have it or you don’t. Instead (as I’m sure you know, actually, I’m just wanting to remind you), people with autism fall along a wide spectrum, and can move back and forth along it. Joey might meet criteria for autism now, but with the good parenting he receives and the early intervention services you’ll surely procure for him, there is little doubt he will improve greatly.

    In my work, I am currently treating an 11-year-old girl who has autism (though I am not treating her for the autism, but for an unrelated reason) who is extremely high functioning. Her autism is barely noticeable (just some social quirks), and according to her mom, while she still has a medical diagnosis of autism, her school (a regular public school) has “removed” her educational diagnosis of autism, and she is completely mainstreamed and doing well.

    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.

    Take care, Susie. Your love for your kids (and the delight you show in them) is moving.

  8. I know autism is a terrifying devastating label for parents to receive, I’ve worked in ABA services for 13 years……the thing is, the kids always seem to amaze me….with their gains, with their talents, with their abilities. Some of these kids grow up into people that change our world…..because of how they see our world…..Kit might be one of them……It’ll be a hard up hill journey for your family…..Kit’s gains may not be easy but the celebration for them will be huge!
    Just for fun, google Famous People with Autism….I think you might be surprised who’s on the list

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