Tragic Sandwich

Tag: music therapy

  • Diagnosis: Person

    A hundred years ago–okay, in January–I wrote about our efforts to help Baguette with her speech delay. I was going to write more. I didn’t, really.

    It’s not that I was avoiding the subject, it’s that I didn’t really know what to say about it.

    Since January, we’ve eliminated the idea of thrice-weekly occupational therapy appointments; while she does have some sensory-seeking characteristics, we don’t see indicators of the Sensory Processing Disorder that the therapist suspected.

    We’ve tried–and failed–to get Baguette’s hearing tested (she would not cooperate with the protocol). We’ve also determined that if Baguette really had a hearing problem, she wouldn’t hear as well as she does, and she wouldn’t be able to memorize what she hears as well as she does. So we’ll probably try the testing again at some point, but we don’t think it’s a priority.

    We had an in-network evaluation with a speech therapist, who recommended twice-weekly sessions that were denied by the insurance company. This is both infuriating and not a big deal, because we were happy with our speech therapist and could not have gotten Baguette to the location that the insurance company would have insisted on.

    We’ve continued–mostly, Mr. Sandwich has continued–her twice-weekly speech therapy and music therapy sessions. Once a week the speech therapist comes to school, and once a week Baguette goes to the therapist’s office.

    We’ve hired a “shadow,” who helps Baguette with classroom activities, encourages her to look at and speak to her classmates, reinforces the activities introduces by the speech therapist, and tries and tries and tries to help her with potty training.

    And we went to a developmental pediatrician. He talked to us and observed Baguette for an hour, and sent us home with a form for us and a form for the teacher and a request to take video of Baguette in class, to see how she interacts with other children.

    At the first meeting, he said that he couldn’t yet diagnose her with Autism Spectrum Disorder, but he saw things that might indicate it. At the second meeting–last week–he did issue that diagnosis.

    This is not a surprise to me. My reading to date has been admittedly spotty, but it seems to fit. And there are a lot of things that now connect–the sleep challenges, the picky eating, etc.

    But at the same time, I recognize that a lot of those things are also simply Baguette. She is a happy, funny, intense, independent, adventurous, STUBBORN little girl who chooses whether to comply. And she has autism.

    How much is autism, and how much is her personality? I’m not sure they can really be separated. But I do know that autism is not the only thing that makes her who she is. It is part of who she is, just as many things are.

    So as we now embark on the process of setting up an Applied Behavioral Analysis program for her, I want to pay close attention to what we’re actually working on: helping her develop skills that will give her greater flexibility in the world and throughout her life.

    But I also think she’s perfect just as she is, and I want her to be the Baguettiest Baguette she can possibly be.

  • Update: Baguette and Speech Therapy

    Forgive me for the rambling post. It won’t be the last.

    Two months ago, I wrote that we were exploring speech therapy for Baguette, based on feedback from her school and our concerns about her confidence levels.

    While we were able to get an in-network referral, it wasn’t possible to get a timely appointment. And while the public school system does offer free speech therapy, Baguette isn’t old enough qualify for it, and we didn’t want to wait until she is. So we got references and decided to pursue private therapy.

    For nearly two months, Mr. Sandwich has been taking her to the therapist’s office twice a week, and the therapist has made some visits to Baguette in her classroom.

    I have to be honest–I don’t really understand a lot of this. To start with, I haven’t seen the speech therapist since the original evaluation. For a host of reasons, it’s easier for Mr. Sandwich to take time away from work than it is for me. And a lot of the terminology is foreign to me; I’m trying to learn it, but I think that there’s a certain amount of irony that a field that is about improving communication uses jargon that gets in the way of communication.

    The therapist’s concern isn’t so much about enunciation as it is about the way Baguette uses language; she apparently uses it internally rather than externally. (If this topic is new to you, do you understand what that means, or do you need someone to explain it to you? That’s the kind of jargon I’m talking about.)

    The focus is on play, encouraging Baguette to communicate in specific ways. Right now we’re working on getting her to answer questions with “Yes.”

    I spoke by phone with the therapist before Christmas, and she said that Baguette is “making wonderful progress.” People around us say that they see her being much more interactive with her peers, and that she talks more freely and confidently. We see that ourselves.

    So you may understand my frustration and confusion when we learned that in addition to her twice-weekly sessions (at least one of which will be paired with a music therapy session), they want to add three occupational therapy sessions each week. If Baguette’s progress is so wonderful, why are we more than doubling–possibly even tripling–her therapy? Why does she need sessions every day?

    People keep coming back to the fact that she plays with sand, often lying down in it and pouring it over herself. They say that this isn’t “purposeful play.”

    So, in my effort to be a good and involved parent, I set out to research “purposeful play.” And I have no idea what it is. I see the phrase used, but I can’t find a solid definition of it. And I can find nothing about why the way Baguette plays with sand is bad. In fact, all I can find is that sand play is really, really good.

    Next week we go to the in-network evaluation. I’m curious to hear what they have to say, and what services will be available to us. But right now I’m very, very skeptical.