Tragic Sandwich

Tag: speech 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.

  • It’s Friday, Right?

    I feel like this week has gone on for about a year.

    Monday was a holiday, and so being us, we went snowshoeing. Baguette loves the snow, but we dramatically underestimated how quickly a not-quite-three-year-old can get wet and cold.

    Tuesday we went back to work, and Baguette went back to school. Honestly, I don’t really remember Tuesday.

    Wednesday we had Baguette’s in-network evaluation for speech therapy. More on that in another post; for this one, let’s just say that the appointment started late and ran longer than we expected; Baguette missed snack time and got very grouchy; she napped for a grand total of 25 minutes; and at the end of the day we had a conference with one of her teachers. More on that in another post, too.

    Thursday was crazy busy, and also rainy. That meant that Baguette got to wear her raincoat and boots. It also meant that she wanted her umbrella, which I did not have time to find. In the evening she ate and ate and ate.

    This morning I dropped her off at day care, narrowly avoiding an umbrella-related meltdown, and one of her teachers referred to “the breakfast she doesn’t eat any of.” Which explains the evening hunger. And then work was crazy busy again, with much soothing of ruffled feathers in some directions and prodding in others.

    So now we’re home, and while a hat-stacking-related meltdown led Baguette to declare her interest in “go bed,” we are back up. There has been playing with “A-B-C Puzzle” and her new dump truck–it arrived today, and I realized that I order so many things from Amazon that everyday is Christmas. At the moment we’re winding down (I hope) with Sesame Street, and if we’re really lucky, she’ll actually go to sleep and let us watch a sitcom. Ha!

    So I leave you with this:

    elephant dinosaur robot toys
    An elephant, a dinosaur, and a robot walk into a bar . . .

  • 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.

  • Confidence and Communication

    Backside My Fair Lady - In Stereo 1959

    I’ve written a bit about Baguette’s school, and their concerns about how she interacts with her classmates. Here are some of our observations:

    1) She does get wary around unfamiliar people and large groups.

    2) She is overjoyed to play with Bestie, and she warms up quickly to unfamiliar children. Shoot, when we went to Santa Barbara, we’d get to a playground and the first thing she’d do was hug some little girl she’d never seen before.

    3) She is not as articulate as her classmates. We knew this was the case with Bestie, but Bestie is a little older and has always been very verbal–the two of them really can’t be compared. Now, though, we’re seeing a difference between her and classmates who are several months younger.

    4) Her vocabulary is booming. She repeats things we say, and things she hears from Sesame Street.

    5) Her enunciation is not very clear at all.

    The result of this is that she lacks confidence in large groups. So she talks up a storm at home, but is largely silent at school. And it’s getting in the way of her toilet training, because while she is telling people that she needs to go to the bathroom, she’s not doing it with words–and apparently her teachers are unable to recognize that.

    We wanted to let her develop at her own pace, and gave her until 2-1/2. But it’s clear that the pace is too slow for her own satisfaction, and she’s getting frustrated by the discrepancy between her desire to communicate and her ability to do so.

    So we’ve started to explore speech therapy. We have a referral from her doctor, but we couldn’t get an appointment until late January–by which time we’ll have changed insurance providers, making that referral useless. Plus, January. And there are programs available through the public school system, but she isn’t eligible to participate until she turns three.

    The next option is a private program, for which we’d pay out of pocket. Not cheap, not cheap at all. But this is a Big Deal, and we save for Big Deal expenses.

    We’re gearing up for intensive research. Because we want to give our daughter opportunities. Not the moon. Just the usual stuff. Like self-expression.

    Photo by Piano Piano! via Flickr.