1.17.2013

Second Opinion

We can get used to just about anything, we humans (except possibly teenage behavior, which, thankfully, is a phase). So when I took Leo in to his wonderful pediatrician this morning to follow up on next steps for his seizure and anaphylactic shock episode, I was expecting allergist and neurologist referrals and another EpiPen prescription, possibly a conversation about seasonal allergies and whether or not his recent hoarseness is due to those, the after-effects of emergency intubation, or his voice changing -- not a conversation about how Leo's behavior has gotten out of control.

Because I've gotten used to how different Leo has been since his seizure. And maybe just how gradually different he's been since stopping Risperdal three months ago. He's become more bumptiously active, not necessarily in a bad way though he did accidentally run into his grandmother during Christmas -- something she's always been worried about, and even though she said she was OK she was also shaken. He has been having a harder and harder time getting through our usual outings and excursions without getting upset -- about not getting a treat at the grocery store (never a guarantee), or not getting take-home pizza at Costco (also never a guarantee). His teacher has let me know that the last two weeks have been ones of unprecedented classroom activity and sensory-seeking, so much so that they now have a stand-based punching bag in the corner of the class for him to unleash all his excess energy. And he's been having a devil of a time falling asleep at night, though in the morning he does not want to get up when the alarm rings, which is also different as he's usually our alarm.

I can absorb this all now, in hindsight. But I couldn't recognize that yes, his behaviors were not within standard operating parameters, not until midway through this morning's appointment when he had a stimming cavalcade -- of hitting me. And then he hit his doctor. It wasn't even truly aggressive, more puckish than anything else, because he was not angry and kept smiling the whole time. But it hurt, and he didn't seem to be able to stop, and since I cry if people look at me funny you can imagine the sobbing wreck I shortly became.

Though his pediatrician took her hit in stride (she often spends her vacations doing humanitarian medical work in areas of conflict), she also let me know she was seriously worried about Leo, and would be putting in a call in to his behavioral pediatrician -- the doctor who prescribed Leo's Risperdal. Who called me less than 15 minutes after I arrived home. And let me know that it's probably time to revisit meds ... if not Risperdal, then the Seroquel we'd been intending to transition him to anyway three months ago. I just need to call the neurologist Leo's pediatrician did in fact refer me to, and ask her if Seroquel would interfere with any of the tests she'd want to run on our boy.

I don't have a problem trying a new med for Leo. I really don't. Um. But I have to admit that in my heart of hearts I was so very much hoping Leo had outgrown the need for behavioral meds. Because I don't like meds. I don't like to take them, I don't like my kids to have to take them.

And that is selfish, because my son is teetering on the edge of a behavioral precipice right now, and if he falls over that edge -- if his behaviors spiral so badly that he can't focus, can't go to school, can't leave the house, or we can't have friends visit -- all because I don't like meds -- then that makes his life suck and makes me a bad parent.

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In other current news, I'm pissed about Amy Lutz's one-sided neurodiversity hit piece on Slate, and think you should read Emily Willingham's Forbes article Can People Really Grow Out Of Autism?, as it includes perspectives from autistic people. Under typical circumstances I would shred the former and write my own piece on the latter, but critiquing via a spattering of social media and typing the post above is all I got for today. I'm going to go pet my cat, pretend I can't see the mess that is my house, and then pick up my kids.

8 comments:

  1. Elaine2:49 PM

    I totally understand your ambivalence toward medication, but you've had good results in the past, so you should expect good results now. With the right meds and nicer weather coming, I'm sure Mr. Leo will be back on track soon. PS Even teenage behavior can be a form of communication. It's a really hard time for kids and they are going through a lot of big changes that can be hard to process.

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  2. Jenny Saul-Avila7:02 PM

    My son, who is much younger than yours, has recently become much more seeker-ish, hyper, often unable to sit still & has been hitting, pinching & biting at times when he's not angry, but smiling. Honestly, it's been kind of freaking me out. It's like every step forward in one area, brings another area down. But when speaking with his grandmother about it - after she was remarking on how happy he'd been at her house that day, but how incredibly hyper too - we did come to one contributing factor - the weather has mostly been lousy, raining, cold & outside time to run around & burn off energy is rare. Plus, it seems when we take him places with the intent to let him run around, suddenly, he becomes fixated on something to the point where he's just sitting. Or he wants only to be carried, does not want to even walk. Then we get home & he's bouncing off the furniture again. I don't get it. I just hope it's a phase.
    I also sincerely hope that your son finds some calm as well & that this is, in some ways, a phase, followed by something much easier.

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  3. This is so honest and thoughtful, Shannon. I know you'll find the right solutions for Leo and your family. Sending love and plenty of good mojo your way. xxk

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  4. Anonymous2:34 PM

    "And that is selfish, because my son is teetering on the edge of a behavioral precipice right now, and if he falls over that edge -- if his behaviors spiral so badly that he can't focus, can't go to school, can't leave the house, or we can't have friends visit -- all because I don't like meds -- then that makes his life suck and makes me a bad parent."
    I'm questioning this logic...especially about his life sucking and you being a bad parent. It's quite possible he would feel his life DIDN'T suck if he didn't have to go to school, didn't leave the house, and didn't have friends over. Also, people aren't bad parents just because they don't send their kids to school, take the kids out of the house, or have friends over.
    If you just want him to be able to do those things and you suppose giving him medication would help, that's your decision as a parent. But there are autism parents who don't send their kids to school, or make the kids to go out, or have friends come over and don't medicate them and that's a choice that suits them.

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  5. Anonymous3:57 PM

    I share your resistance to behavior meds. What finally moved me past that was realizing that when I talked about meds I sounded just like my anti-vax friends talking about vaccines. They see nothing but risk to vaccination, as though there were no benefits. I only saw the potential dangers from meds, ignoring that without them my kid had major trouble eating and sleeping, fell into meltdowns easily, and often hurt himself when raging.

    We still have fine-tuning to do, but my kid clearly has a better life on meds.

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  6. Anonymous4:12 AM

    my kid won't take any medication

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  7. I don't think what makes someone a bad parent has to do so much with what they do, but why they do it. Your "I don't like meds" isn't selfish, it's not that you don't want to spend the money or take the time to fill a prescription...it's that you're wanting to protect your son from their down sides. It may very well be that right now the up sides will outweigh the down, and so you'll do what you need to do. And when they don't, you'll do what you need to do then.

    Hugs...

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  8. Thanks for the words of kindness and support. I am hoping we can help get Leo through this rough patch.

    As for @Anonymous's " It's quite possible he would feel his life DIDN'T suck if he didn't have to go to school, didn't leave the house, and didn't have friends over. Also, people aren't bad parents just because they don't send their kids to school, take the kids out of the house, or have friends over."

    I am not generalizing or projecting. This is about Leo, and my role as his mother. And these are things that make Leo happy. And if I can't help him access and enjoy them, then I feel like a bad parent, because I'm failing him.

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Respectful disagreement encouraged.

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