Saturday: piano, and eye-opening reading
Mar. 16th, 2024 10:41 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
walkitoutA. got up on her own for piano. The piano is loud, obviously, but even so, I usually have to go get her up. Not today! She got up in the middle of R.’s lesson, came down, ate, put her plate over by the dishwasher. I am stunned. She was up until midnight. I had warned the instructor that she might or might not be participating today and why. He was extremely understanding.
I decided to take a look at what the People Online have to say about parents, schools, students and therapy. Yes, I know, probably should have done this before!
Some discussion is teachers looking for guidance on whether it is overstepping to suggest to parents that therapy for the kiddo might help. They were discouraged in general, often on the grounds that this would result in therapy being the financial responsibility of the district. Let me just say, the amounts of money I shelled out for various therapies suggested by that flaming asshole OT that CASE inflicted on T. I have a policy, where if I am in conflict with someone intransigent, I will do everything (okay, nothing that is contra important values, obviously) they suggest will “fix” the problem. If things improve, yay! They were right! I had a good outcome! If things do not improve, or, as is more typical, got worse, I now look like the reasonable one (I tried the things I was told would help If I Just, and we’ve already exhausted their initial list of But If You Just). Over the years, this policy has become tattered and threadbare. It now stinks really bad. I’m probably never going to do this again. And also, I’m going to start attending to the timeline much more closely.
To be clear: it’s not that I will never listen to anyone again. I _do_ listen to people! They are often super helpful! My life is not All Conflict! Altho, a disproportionate amount of my blog is, in part because I need to have something to refresh my intentionally suppressed negative memories, and in part because Drama Makes for Engaging Content (<— that is mostly, but only mostly, a joke).
Some of the discussion online is about having specific behavior or attitude goals for the therapist and the kid to work on, and then leaving them to it and not being overly intrusive. There are also remarks about Don’t Expect to Be in Every Session with Therapist and Kiddo. All of _this_ is hilarious, not in a way that makes them _look_ bad (I mean, it kinda does, but that’s not WHY it’s funny; that’s just sad). It’s hilarious because I got the therapist for T. because he insisted that’s what he wanted. I didn’t have a goal. I just ask how things went and express generic hopes that it was helpful and/or enjoyable, and that if he ever wants to talk to me about it more, he absolutely can, but there is literally no pressure. The second therapist happened because I was getting a lot of pressure from the school psychologist to get A. a therapist and, “A. says she doesn’t understand why she needs or should have one” didn’t seem to be compelling as an answer to anyone (I was fine with it). When the pressure did not let up, I engaged in malicious compliance and got a Team A. therapist and consistently ignored all efforts to have any communication between the therapist and the school. A. wouldn’t go to the therapist without me, and the therapist does family therapy and was fine with this, so that’s what we do (oh, look, I have a therapist too! Whee!). I had no “goal” for therapy, and this also seems to be fine (I picked a relational therapist and I’m paying her directly). The rapid swap from the use of the word “punch” and the phrase “handbook violation” in an email from the vice principal (since retracted as noted in earlier post) to pressure to sign the form allowing communication is why I’m doing this research.
I’ll be back; I have to do before noon duolingo.
A.’s piano lesson really went great and she’s in a good mood. I said, hey, we’re going to learn a new Adult Skill: cleaning a toilet. She was not enthused, but I said, this is the Watch One stage. She helped clean the sink and the counter and we roped T. into helping declutter the counter. This was awesome!
T.’s off to see a play at the jr hi. We’ve scheduled a test drive for the first of a list of candidate vehicles to buy him for graduation. He identified the dealership and that they had the right car available. After the play, he’ll go over with his dad but in separate cars, and they’ll do the test drive and then T. is off to work, conveniently in the same town as the dealership. Progress on multiple fronts!
Meanwhile, A. is reaching out to a friendly-acquaintance, potential friend at school to schedule some online gaming. Mental Health Day is the gift that keeps on giving, along with a plan that gives us hope.
Back to the therapy communication research!
We have teachers wondering if they can recommend therapy and everyone piling onto them saying no, don’t put your district on the hook financially (*sigh*). We have advice to parents to set goals for the kid’s therapy. (*double sigh*) At least that’s being used to manage parental expectations / set boundaries. What else do we have?
We have an assumption that there isn’t a 504 or IEP already involved, and assumptions that the kid doesn’t already have a diagnosis. LOL. My kids have both had diagnoses since they were wee. They’ve been receiving services since pre-K (T.) and early intervention (A.). We’ve had to escalate to get appropriate services for T. AND we’ve requested return to district for T., when an appropriate in district program was created. Ironically, the district did not tell us that program was created, _even tho the teacher designing the program designed it with T. as the target audience_. I mean, what. (How do we know that? The teacher told us that’s what she did. I know it can be difficult to believe if you’ve recently had an interaction with me that R. would describe as I Disapprove of Reality So I Will Remake It the Way I Want It to Be, but I actually do care about relationships and I have some weirdly good ones with people.)
Anyway. None of this helps me? The school knows the sensory issues. _The school sent me email about evolving symptoms that are almost certainly seizure activity ramping up._ They did that when A. was in pre-K, too; they’d send email about her staring off into space and not responding and I was like, whatever, until they said, her face went white, and after I got over the initial, uh, she’s pretty pale, my brain caught up and said, wait, no, that’s a petit mal. We haven’t been able to get the sensory issues adequately mitigated in this school environment. Partly, that’s a Them Problem. A pass to switch classes early or late would help with the passing time crowding overwhelm; an escort would also help, and could help with the Too Much Stuff to Manage problem that means she doesn’t want to bring her over-the-ear headphones because it’s Just One More Big Thing to Manage. Until A. found the migraine glasses, we were seeing a _lot_ of seizure activity; the glasses absolutely fixed that.
If there’s a lesson here, it’s that I probably should have involved a neurologist last year. But we’ve never managed to get any action out of the neurologist we had, because we never actually caught anything on EEG (didn’t do a take home, just a sleep deprived, and honestly, that was the problem). We’ve done well enough managing triggers that I lulled myself and everyone else into a sense that the problem was gone, much like there are people around me who lose track of the food allergies and picky eater issues, because I’ve gotten so good at navigating restaurants. Fundamentally, we don’t really _want_ any of us to be on long-term medication (we resent having to take antihistamines, honestly). We are definitely part of that problem.
OTOH, I’ve _never_ thought it made sense to medicate so you can do something that makes you non-functional without the medication. Avoid the trigger! I’ve been on cruises and took a quarter tab of dramamine every 4-5 hours to do so. Yes, I am a hypocrite. Yes, I had to wake up in the middle of the night to take one. _And it was a cruise._ It wasn’t going to school for years. I basically got on a boat with my extended family and the boat entertained everyone else and I lay around in a haze for several days. The dramamine helps with allergies, and I could still have one drink, so it was actually a fantastic experience. The only downside was my sister kept wanting me to go do shit with them, and my entire plan had been to NOT do anything.
The specific reason I’ve been reluctant to get a behaviorist oriented therapist and/or have the therapist communicate with the school is because I believed that the goal for the school is to fit A. into their environment and have her perform at a high and increasing level. We all know that the school is a bad fit for what A. needs in life to thrive. I’ve expressed concern that this is not an appropriate placement (I did that at the junior high, too, but that was only 2 years, and those were the coming-out-of-the-pandemic years and everything was weird anyway. Plus, junior high.), and I did that when T. was transitioning from pre-K to K (and K was an unrelenting disaster that the district pulled the plug on before I had all my experts fully onboard with the plan).
On FF last night, E. really objected to me using the word “bad” to describe this environment triggering increasing seizure symptom situation. E. likes nuance, which is normally fine and also wildly insensitive in this particular context. I’m not sure precisely what she was getting at, _and I don’t care_. The second sense of “bad” in Oxford languages online (what you get when you google “define bad”) is “not such as to be hoped for or desired; unpleasant or unwelcome”. I just don’t understand how this word could possibly be other than the right word for this situation. E. tried a bunch of ways to express her values, and I suspect the core idea involved concerns about ableism. I think it’s obvious that if you are being pressured into doing something you don’t want to do, that is harming you, and that is causing you to have a lot of unpleasant seizure type symptoms, that’s “bad”. It’s not “bad” that you happen to be the kind of person who has this type of reaction to an environment that is unsuitable for you. E. is probably thinking about this in the context of people in E.’s life who are struggling to find appropriate niches, and whose appropriate niches become less and less supportive as the people in them age and eventually pass away. E. may also be thinking about how for some people, embracing the dissonance, the “not fitting in” is part of them “thriving”. I would _much rather_ be the boring person in the middle, than the person who everyone looks at and goes, this is definitely the one that doesn’t quite belong. I don’t want for me, or anyone else, especially my daughter, to always be the one that doesn’t fit in, no matter how hard they try to find their people. At some point, there is a surfeit of being special, an excess so great that even the numbing properties of great wealth and awesome vacations and amazing friends are not enough to overcome. There are not enough carbs in the world. At some point, ya gotta pull the plug and say, if I don’t fit in anywhere, let’s make a place where I do.
R. and I have been framing “homebound” incorrectly. We look at all the outside-the-home things that people don’t get to experience. But they _do_ get to fit in, within their home. I don’t want to be limited to my home (yet), nor do I want that for my daughter. I now want, badly enough, clearly enough, that I’m not going to tolerate any more, the places where I cannot fit, the places where my daughter cannot. I’m afraid I’m going to have to, once more, Replace Reality with a Better Way of Doing Things.
We are going to make our environment Fit For Us.
I decided to take a look at what the People Online have to say about parents, schools, students and therapy. Yes, I know, probably should have done this before!
Some discussion is teachers looking for guidance on whether it is overstepping to suggest to parents that therapy for the kiddo might help. They were discouraged in general, often on the grounds that this would result in therapy being the financial responsibility of the district. Let me just say, the amounts of money I shelled out for various therapies suggested by that flaming asshole OT that CASE inflicted on T. I have a policy, where if I am in conflict with someone intransigent, I will do everything (okay, nothing that is contra important values, obviously) they suggest will “fix” the problem. If things improve, yay! They were right! I had a good outcome! If things do not improve, or, as is more typical, got worse, I now look like the reasonable one (I tried the things I was told would help If I Just, and we’ve already exhausted their initial list of But If You Just). Over the years, this policy has become tattered and threadbare. It now stinks really bad. I’m probably never going to do this again. And also, I’m going to start attending to the timeline much more closely.
To be clear: it’s not that I will never listen to anyone again. I _do_ listen to people! They are often super helpful! My life is not All Conflict! Altho, a disproportionate amount of my blog is, in part because I need to have something to refresh my intentionally suppressed negative memories, and in part because Drama Makes for Engaging Content (<— that is mostly, but only mostly, a joke).
Some of the discussion online is about having specific behavior or attitude goals for the therapist and the kid to work on, and then leaving them to it and not being overly intrusive. There are also remarks about Don’t Expect to Be in Every Session with Therapist and Kiddo. All of _this_ is hilarious, not in a way that makes them _look_ bad (I mean, it kinda does, but that’s not WHY it’s funny; that’s just sad). It’s hilarious because I got the therapist for T. because he insisted that’s what he wanted. I didn’t have a goal. I just ask how things went and express generic hopes that it was helpful and/or enjoyable, and that if he ever wants to talk to me about it more, he absolutely can, but there is literally no pressure. The second therapist happened because I was getting a lot of pressure from the school psychologist to get A. a therapist and, “A. says she doesn’t understand why she needs or should have one” didn’t seem to be compelling as an answer to anyone (I was fine with it). When the pressure did not let up, I engaged in malicious compliance and got a Team A. therapist and consistently ignored all efforts to have any communication between the therapist and the school. A. wouldn’t go to the therapist without me, and the therapist does family therapy and was fine with this, so that’s what we do (oh, look, I have a therapist too! Whee!). I had no “goal” for therapy, and this also seems to be fine (I picked a relational therapist and I’m paying her directly). The rapid swap from the use of the word “punch” and the phrase “handbook violation” in an email from the vice principal (since retracted as noted in earlier post) to pressure to sign the form allowing communication is why I’m doing this research.
I’ll be back; I have to do before noon duolingo.
A.’s piano lesson really went great and she’s in a good mood. I said, hey, we’re going to learn a new Adult Skill: cleaning a toilet. She was not enthused, but I said, this is the Watch One stage. She helped clean the sink and the counter and we roped T. into helping declutter the counter. This was awesome!
T.’s off to see a play at the jr hi. We’ve scheduled a test drive for the first of a list of candidate vehicles to buy him for graduation. He identified the dealership and that they had the right car available. After the play, he’ll go over with his dad but in separate cars, and they’ll do the test drive and then T. is off to work, conveniently in the same town as the dealership. Progress on multiple fronts!
Meanwhile, A. is reaching out to a friendly-acquaintance, potential friend at school to schedule some online gaming. Mental Health Day is the gift that keeps on giving, along with a plan that gives us hope.
Back to the therapy communication research!
We have teachers wondering if they can recommend therapy and everyone piling onto them saying no, don’t put your district on the hook financially (*sigh*). We have advice to parents to set goals for the kid’s therapy. (*double sigh*) At least that’s being used to manage parental expectations / set boundaries. What else do we have?
We have an assumption that there isn’t a 504 or IEP already involved, and assumptions that the kid doesn’t already have a diagnosis. LOL. My kids have both had diagnoses since they were wee. They’ve been receiving services since pre-K (T.) and early intervention (A.). We’ve had to escalate to get appropriate services for T. AND we’ve requested return to district for T., when an appropriate in district program was created. Ironically, the district did not tell us that program was created, _even tho the teacher designing the program designed it with T. as the target audience_. I mean, what. (How do we know that? The teacher told us that’s what she did. I know it can be difficult to believe if you’ve recently had an interaction with me that R. would describe as I Disapprove of Reality So I Will Remake It the Way I Want It to Be, but I actually do care about relationships and I have some weirdly good ones with people.)
Anyway. None of this helps me? The school knows the sensory issues. _The school sent me email about evolving symptoms that are almost certainly seizure activity ramping up._ They did that when A. was in pre-K, too; they’d send email about her staring off into space and not responding and I was like, whatever, until they said, her face went white, and after I got over the initial, uh, she’s pretty pale, my brain caught up and said, wait, no, that’s a petit mal. We haven’t been able to get the sensory issues adequately mitigated in this school environment. Partly, that’s a Them Problem. A pass to switch classes early or late would help with the passing time crowding overwhelm; an escort would also help, and could help with the Too Much Stuff to Manage problem that means she doesn’t want to bring her over-the-ear headphones because it’s Just One More Big Thing to Manage. Until A. found the migraine glasses, we were seeing a _lot_ of seizure activity; the glasses absolutely fixed that.
If there’s a lesson here, it’s that I probably should have involved a neurologist last year. But we’ve never managed to get any action out of the neurologist we had, because we never actually caught anything on EEG (didn’t do a take home, just a sleep deprived, and honestly, that was the problem). We’ve done well enough managing triggers that I lulled myself and everyone else into a sense that the problem was gone, much like there are people around me who lose track of the food allergies and picky eater issues, because I’ve gotten so good at navigating restaurants. Fundamentally, we don’t really _want_ any of us to be on long-term medication (we resent having to take antihistamines, honestly). We are definitely part of that problem.
OTOH, I’ve _never_ thought it made sense to medicate so you can do something that makes you non-functional without the medication. Avoid the trigger! I’ve been on cruises and took a quarter tab of dramamine every 4-5 hours to do so. Yes, I am a hypocrite. Yes, I had to wake up in the middle of the night to take one. _And it was a cruise._ It wasn’t going to school for years. I basically got on a boat with my extended family and the boat entertained everyone else and I lay around in a haze for several days. The dramamine helps with allergies, and I could still have one drink, so it was actually a fantastic experience. The only downside was my sister kept wanting me to go do shit with them, and my entire plan had been to NOT do anything.
The specific reason I’ve been reluctant to get a behaviorist oriented therapist and/or have the therapist communicate with the school is because I believed that the goal for the school is to fit A. into their environment and have her perform at a high and increasing level. We all know that the school is a bad fit for what A. needs in life to thrive. I’ve expressed concern that this is not an appropriate placement (I did that at the junior high, too, but that was only 2 years, and those were the coming-out-of-the-pandemic years and everything was weird anyway. Plus, junior high.), and I did that when T. was transitioning from pre-K to K (and K was an unrelenting disaster that the district pulled the plug on before I had all my experts fully onboard with the plan).
On FF last night, E. really objected to me using the word “bad” to describe this environment triggering increasing seizure symptom situation. E. likes nuance, which is normally fine and also wildly insensitive in this particular context. I’m not sure precisely what she was getting at, _and I don’t care_. The second sense of “bad” in Oxford languages online (what you get when you google “define bad”) is “not such as to be hoped for or desired; unpleasant or unwelcome”. I just don’t understand how this word could possibly be other than the right word for this situation. E. tried a bunch of ways to express her values, and I suspect the core idea involved concerns about ableism. I think it’s obvious that if you are being pressured into doing something you don’t want to do, that is harming you, and that is causing you to have a lot of unpleasant seizure type symptoms, that’s “bad”. It’s not “bad” that you happen to be the kind of person who has this type of reaction to an environment that is unsuitable for you. E. is probably thinking about this in the context of people in E.’s life who are struggling to find appropriate niches, and whose appropriate niches become less and less supportive as the people in them age and eventually pass away. E. may also be thinking about how for some people, embracing the dissonance, the “not fitting in” is part of them “thriving”. I would _much rather_ be the boring person in the middle, than the person who everyone looks at and goes, this is definitely the one that doesn’t quite belong. I don’t want for me, or anyone else, especially my daughter, to always be the one that doesn’t fit in, no matter how hard they try to find their people. At some point, there is a surfeit of being special, an excess so great that even the numbing properties of great wealth and awesome vacations and amazing friends are not enough to overcome. There are not enough carbs in the world. At some point, ya gotta pull the plug and say, if I don’t fit in anywhere, let’s make a place where I do.
R. and I have been framing “homebound” incorrectly. We look at all the outside-the-home things that people don’t get to experience. But they _do_ get to fit in, within their home. I don’t want to be limited to my home (yet), nor do I want that for my daughter. I now want, badly enough, clearly enough, that I’m not going to tolerate any more, the places where I cannot fit, the places where my daughter cannot. I’m afraid I’m going to have to, once more, Replace Reality with a Better Way of Doing Things.
We are going to make our environment Fit For Us.