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.

17 thoughts on “Diagnosis: Person

  1. Mama Sandwich, so glad that you were able to get a diagnosis and therefore be able to help her out some more. I’m sure you’ll learn so much more about Baguette and yourself in this new adventure. “Baguettiest Baguette”: I like that!

  2. Sorry about the diagnosis. I don’t know much about autism, but I’m sure that part of it is Baguette’s personality – but you are a good mom for wanting to get her the help that she needs at such an early age which will help her all her life. Sending good vibes your way….

    1. Thanks! I don’t know much about autism, either, but I’m about to learn a whole lot.

    1. Thanks! One of the benefits of living in California is that we now have access to many more services and resources than we might in another state.

  3. Hope this doesn’t sound strange, but I’m so glad you have a diagnosis to help you along your way with Baguette. Diagnoses of ADD/ADHD have been extraordinarily helpful for our family (all of us) in figuring out what the next steps are. Sometimes having an answer in hand opens many many doors to information, resources, etc. I agree with you one hundred percent that whatever a child has or is but one part of the child’s personality and makes them the absolute unique person they are. Armed with diagnosis and knowledge, we can help them figure out who that is and how to be that person. We wish you all the best!

    1. It doesn’t sound at all strange. Before the diagnosis, it could have been ANYTHING. It’s hard to research that. Knowing what to focus on is tremendously helpful. There are still a zillion theories, but how we only have to look at that zillion.

      And the best to you and yours, as well!

  4. Oh Lady Sandwich, so glad to hear that you have gotten a diagnosis. I’m sure that must bring a few answers to questions, and perhaps make some of those late, sleepless nights a bit easier to understand! I’m sure it’s a lot to process right now. Thinking of you!

    1. Thanks! It does help make sense of the sleep issues, and many other things. And we’re very fortunate, because while she is clearly different from her peers, her case could be so much more extreme and challenging than it is. We always know how fortunate we are.

  5. She will be the baguettiest baguette of all. is the shadow a peer or an adult? Something to look into (may be a ways off, who knows) is if your school has an autism peer to peer support network (we call it LINKS in Michigan). It’s where the kids learn about autism and are paired up with a peer on the spectrum.

    1. Her current shadow is an adult. We’ll have to look in to LINKS or a local equivalent. Thanks!

  6. “How much is autism, and how much is her personality? I’m not sure they can really be separated.” Exactly.

    Sprout has dozens of indicators for autism. Yet I agree – they are her personality. We just roll with what pops up and deal with her quirks, panic attacks, and high-achievement syndrome (thanks to “Parental Guidance” for that new-favorite term) as needed. The label doesn’t change who our kids are — it just gives you excellent resources and a new direction.

    1. I agree. And I want her to find more ways to share that personality with the world when she wants to. I have no interest in de-quirkifying her.

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