Don’t just hand me things.

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This post has to do with the same topic as my old post Safety Hazards. By the way, the Foradil is no longer a problem for two reasons. One, I had a routine set up so that a staff person would hand me the inhaler with the capsule already inside and punctured. Two, insurance quit covering Foradil and gave me Serevent instead, which is a discus not a capsule.

And now I am typing around the body of a cat who timed her snuggle so that it came after the sound of the nebulizer shut off.

Some background: Now that they know the breathing trouble was bronchiectasis, not asthma and not me just being a pest, I have a treatment routine that makes the “breathing takes effort” thing and the “coughing only brings up phlegm the size of a pinhead” thing far less of a problem. I take two nebulizer treatments a day, each with a vial of 7% saline. But it’s really important to use my inhaler first or else the saline can do terrifying things to my airways that at best take eight puffs of my inhaler to keep me out of the ER.

So the usual routine is someone hands me my inhaler. I take two puffs. Someone hands me a nebulizer mask. I put it on. Depending on my position either I or the other person connect it to the tube and turn on the nebulizer.

So today someone walked into the room, handed me the nebulizer mask, and made a bunch of clanking sounds as well as a small sound like cuujooholdhis. So of course I put the mask on and things could have gone very badly.

The other thing is that I usually have to make an effort for words to be words and not random noise. It’s not just an auditory processing thing, it’s a cognitive/language processing thing where I spend most of my time in a default state where words haven’t even been thought of yet. And even when I concentrate I sort of phase out into that state a lot. So to me, most of my interactions on a typical day involve seeing patterns of movement, hearing patterns of step and tone and stuff, and mostly interacting by the process of being handed something, and then doing whatever I usually do with that object.

Which means “could you hold this?” is just a set of quiet sounds with an offhand, casual feel to them.

And handing me an object you don’t want me to immediately use can be a dangerous idea, depending on what you’re handing me.

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6 responses »

  1. Amanda:

    1. Which “mindspace” do you like more/feel better functioning in? The no-language pattern thing, or the language thing? Presumably, since you said it takes more effort to “be” in the language-use mindspace than the other one, it’s easier to do the other one?

    2. Is auditory language use a different “thing” from writing, for you? If so, is it more “available” more often?
    Maybe you could set up a system where people either write notes to you, or type stuff on your keyboard/voice-synth device? Maybe you’ll connect with it more easily, and not have stuff go bad.

    To be honest, since I’m not autistic (at any rate, never been dx’ed as it) — my primary thing is the visual impairment, like I’ve mentioned before — it’s really difficult for me to relate to your experiences, and stuff.

  2. Maybe you could ask them to do something like mark your inhaler with 1, and mark the nebulizer machine with 2. So this way people who are new to the procedure know what they’re supposed to do.

  3. Something I’ve experienced a lot that seems like it might be related to this is, when doing something with an object (or set of objects), often I find it impossible to stop completing the process of whatever I’m doing in the middle and do something else. It’s more than just being “annoyed” with being interrupted, it’s like physically being locked into actions sometimes. E.g., if I am helping Matt with dinner, and I’m chopping a carrot (for instance), I will just chop until I run out of carrot even if someone is telling me to do something else. So I try to be very sure when I do something that there’s not going to be any need for me to be “on call” to do other stuff. That isn’t always feasible, though.

  4. VioletYoshi,

    If I understand Amanda’s description of events correctly, I think the person did understand that Amanda needed to do one before the other. The difficulty is not “failure to understand the procedure” the difficulty seems to be that the person responsible for ensuring that Amanda does what she needs to do to care for her breathing every day didn’t fully grasp that asking Amanda to simply hold something without using it is an action that Amanda can’t do. Based on some things she has explained in other blog posts about how her brain is wired and how her body works, taking something she is accustomed to using tends to immediately trigger her to actually use it. It happens so automatically and so fast there’s no time for her conscious brain to interfere and decide, “wait, I need to just sit here holding this until after I can receive the other thing I need to use first.” She also has language processing issues that means someone telling her “could you please just hold this for a minute” may not necessarily register right away. And even if it did, it still wouldn’t be enough to override her automatic response to holding the concrete object in her hand.

    What the workers need to do is NOT HAND HER THINGS until it is safe for Amanda to immediately USE the things they are handing her.

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