Tragic Sandwich

Tag: Autism Spectrum Disorder

  • Change

    Remember when I talked about how routine is important, but disrupting the routine is, too?

    No?

    That’s okay. Here’s a link. But you don’t necessarily need to read that, because I’ve got more examples from this weekend.

    • Mr. Sandwich read one of her “Touchy Feely” books using the adjective written on the page, but not the one Baguette prefers. She didn’t get upset, and she didn’t repeat the original phrase. Instead she corrected him, saying, “They are prickly.”
    • We were in the car, and she started to get a little fussy. She asked for her book (she has a sequence in which she reads the Touchy-Feely books, which are firmly in rotation. I asked, “Do you want Mommy to read That’s Not My Dragon?” And she answered, “I want Baguette That’s Not My Dragon.”
    • She’s been playing with the apps for The Monster at the End of This Book and Another Monster at the End of this Book. On Saturday she made up her own chant based on phrases from the apps: “Grover is furry, Grover is furry, YOU! Elmo is cute, Elmo is cute, YOU!”
    • As usual, we went to the zoo. Elephants are her favorite animal, and the demonstration enclosure is always one of our first stops at the L.A. Zoo. But the male elephant sometimes trumpets loudly and scares her. Yesterday the females were doing the demonstration, and she sat on my lap. Almost immediately, she said, “Time to say bye-bye elephants.” I said, “Are you sure? Don’t you want to watch them eat carrots?” She looked at me and said, “I want to go see giraffes please.”
    • When we reached the carousel, toward the end of our visit, I asked if she wanted to ride on one of the animals (she never does–we only ride on the bench seat). She answered with “I want to ride peacock, please.”
    • Last night, she handed Mr. Sandwich one of her stuffed animals and unilaterally changed one of her common Baguette-focused phrases (“I want Daddy take elephant”) to a straightforward instruction: “Daddy, take elephant.”
    • “Frozen” is also back in rotation, and she’s memorized even more of the dialogue. She’s also tailoring it to her own preferences, as in last night’s pronouncement: “It was an accident. She was scared. She didn’t mean it. She didn’t mean any of this. Tonight was my fault–I should be the one to go after her. Bring me my elephant.”

    She’s been in school for three days. It hasn’t been easy, and it hasn’t always felt good. But it is good.

    Little girl with a big stack of books

  • Don’t Panic, It’s Just Autism

    So as I’ve discussed, Baguette has been diagnosed with Autism Spectrum Disorder. We’ve been trying to navigate the process of working with the local school district, insurance, and a psychological agency to get her the services that she needs.

    This is taking much longer than I think it should.

    Part of this is because we are overwhelmed by it. There is always more paperwork–we still haven’t finished the intake form for the regional center. There are so many different service providers. And there is insurance.

    The agency did an evaluation in September. We had all hoped that they would be able to start treatment this month. But the insurance authorization just came through this week. Thanks, insurance.

    And in case that isn’t enough fun, keep in mind that we will have to change insurance companies in January, because our employer is going to stop offering our current plan. (This is not an Affordable Care Act thing. This is the routine “we’ll no longer offer that plan” thing. It’s irritating, no matter why it’s happening.) Will we have to go through authorization again? I suspect so. Will Baguette’s care be interrupted? I freaking hope not.

    Authorization also means that we will be changing the kind of support we’ve been providing in Baguette’s classroom. For most of the past year, she’s had a “shadow” who gives her help in the classroom for part of the day. This is not covered by insurance. But when we start Applied Behavioral Therapy (ABA), there shouldn’t be a need for the shadow. Which will mean that we will be spending less on this–although we will still have co-pays for ABA–but also means that we will have to tell someone who’s been doing exactly what we asked her to that her services are no longer needed.

    All of us, including the shadow, knew that this day would come, and indeed that it was a goal. That doesn’t make it easier.

    And it looks like part of the ABA will take place at preschool, and part will take place at our home, on a mix of evenings and the weekend. So I’ll need to figure out how to modify my work schedule, which offers a variety of challenges as well. I am particularly anxious about this.

    It’s a lot. And it’s not going to be easy. But the idea is that it will help Baguette, and that makes it worthwhile.

    I just think “worthwhile” should come with less paperwork.

  • Little Talks

    Mr. Sandwich wrote this on Monday, and we both wanted to share it here.

    Last week we got the news we had been both expecting and dreading. Baguette was formally diagnosed with Autism Spectrum Disorder. This was not a complete surprise, we had been looking at symptoms and ‘benchmarks’ to one degree or another for at least a year. There was speech therapy, there were visits with the principal at daycare about her behavior and class integration issues, of potty training, and the need for her to have further help. To the friends I’ve talked about it with, I have likened it to a punch that you can see coming. You can brace for it, but you’re still going to feel it.

    So now we have a doctor’s diagnosis. We have a downloaded packet of steps to follow and paths to pursue. As I read my packet I see that I can expect to go through the stages of grief, which I don’t know if I am, or I don’t know if I started months ago when it became so clear that Baguette was different from her peers. I’ve talked with friends whose children are affected too. I’ve felt at alternating times that I am dizzy and steady, even keeled and bowled over. Today Baguette bowled me over, and I haven’t quite gotten up yet.

    I picked her up from daycare late and was rushing to the pool. We’ve noticed how she seems to respond positively to the water, both with speech and behavior and for the past several weeks I’ve been trying to get her into the pool every day. When I buckled her into the carseat she asked for her Sesame Street CD like she always does, but that was in the other car, so all I could do was turn on the radio for the 3-minute drive to the park pool. Of Monsters and Men’s “Little Talks” was playing on the radio and we heard most of that by the time we hit the parking lot. I was running late, and we would only have 12 minutes worth of swimming so I was hustling as fast as I could. As I scooped up Baguette, she was reciting to me. She frequently recites, she doesn’t speak directly, she reiterates whole passages, whole verses of books and songs she knows and keeps as her friends and repeats them to me and Mommy and the World. While I was initially distracted as I fast-marched through the parking lot, she reached out and grabbed my face to turn me towards her and I heard clearly what she was reciting.

    “Listen word I say. Hey. Scream sound same. Hey. Truth vary. Ship carry. Safe shore.”

    She was repeating to me the lyrics she had heard on the radio just moments before. She’s heard that song played before, but not recently, and even if she did I’m not sure I’d expect any three-year-old to mimic lyrics like that. For a brief moment I was struck dumbfounded in the parking lot, trapped between wanting to laugh and congratulate her on her razor-sharp retention and cry over the fact that she couldn’t tell me things other little girls can. The fact that the lyrics are about a woman whose mind is at war with her and the man who still loves her despite this is just the brass wrapped around these particular knuckles. I didn’t have time to process the moment completely. She had started singing “The Farmer in the Dell” and time was ticking away. We only had a few minutes to get in the pool and that was the reason why we were there, for her benefit, not mine.

    Hours have passed now and I can’t shake that refrain she recited to me. I can’t help but think that she was trying to tell me how the wheels in her mind were turning, how she needed me to communicate to her, how she hears the world. “Don’t listen to a word I say. (Hey) The screams all sound the same. (Hey) Though the Truth may vary, this ship will carry our bodies safe to shore.” That song will never be the same for me. Nothing will ever be the same.

  • 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.