Venty vent vent: "faith not fear"

[PeterPan]

Just now, OH_Homeschooler said:

 

Ha, I was going to suggest that, if it's available in your area. It's not the same as going out to eat but it's a little something, right? 

There, I just texted my ds. If he doesn't get it done, I will. I think my problem solving was shut down. Well that and I thought this would END. But they keep upping the ante, extending things, changing the parameters. And right or wrong, I'm pretty sure I'm firm on the mask thing. So I don't know how long that will be. But we can pizzazz this up immediately with carryout. Can you imagine the order? Soup and salad please, with 3 bowls, haha. 

[OH_Homeschooler]

12 minutes ago, PeterPan said:

There, I just texted my ds. If he doesn't get it done, I will. I think my problem solving was shut down. Well that and I thought this would END. But they keep upping the ante, extending things, changing the parameters. And right or wrong, I'm pretty sure I'm firm on the mask thing. So I don't know how long that will be. But we can pizzazz this up immediately with carryout. Can you imagine the order? Soup and salad please, with 3 bowls, haha. 

 

They will be very happy to provide you with the soup and salad and 3 bowls. 🙂

[historically accurate]

1 hour ago, WoolC said:

 

I think the scariest part is that you (general) think that when things get bad there are resources, a safety net, but in reality it’s not there.  

Oh, ((((((WoolC))))) and ((((((PeterPan))))), I've been there, and I am so, so, so sorry that you are there now. 

I did want to address this one part of your post. Unfortunately, the safety net isn't necessarily there in the best of times either. Honestly the run-around you are getting now doesn't sound much worse than the usual mode of operation for mental health care. A little over a year ago, I personally spent 3 1/2 weeks awake almost 20 hours a day in order to put my child on home suicide watch (my DH took the 4 hour shift and some weekend shifts) because we were unable to access help. Call after call after call went in and no one was able to help, and we were already established with a psychiatrist, a therapist, and the child had already done a couple of stints in-patient. I would hope that people are waking to the fact that we need mental health support more than ever now, but even if all of this works out in the end, it feels hopeless when you and your family member are the one in the middle of it.

I wish I could help you navigate through this - I remember my fear and anguish during my time in it, and I wouldn't wish it on anyone. So, all I have is hugs and prayers for you. 

[Guest]

46 minutes ago, PeterPan said:

Bingo. These politicians with their theories on timetables have NO CLUE what the consequences are. All the things we'd normally do to get him stabilized are removed. And some of it is really basic stuff. He misses OLIVE GARDEN. You know how stupid this is?? This is a kid who goes all over the world with me on cruises and then is like hallelujah I'm finally back to my beloved Olive Garden. It's a security thing for him, ubiquitous, always there, always the same, and they CLOSED OLIVE GARDEN. We need to reopen Olive Garden for mental health, kwim? Your stinking timetables and theories don't matter. 

So we're making it work. Take care of ourselves, take care of our kids, in that order. I ran out of options, so then we had to think of more options. I've been beating the bushes on friends (professionals) like hey I need another tool. And professionals who work with ds are holding in their *own* mental health worries to extend and work with our stressed kids. 

Whatever. I think what hit me was round 2 grief. I dealt with round 1, thought I was fine, and now I'm realizing that reopening isn't reopening, that it's going to be protracted, that we have months more hurt. It's a whole additional layer of stamina required, and I'm having to meltdown a bit and deal with it so we can suck up and try again. Like so what if they open up Olive Garden? If they open it and require masks, I'm not sending him out in a mask. I've decided, just for us, that the stress of that is greater than the stress of being home. 

So this is not going away. We have a long haul ahead even after having done a lot. Sigh.

for my DD, one of the biggest Losses has been Taco Bell. She often would go to the one about a mile from our house, get her usual and spend time reading on her phone or studying. She can't go to taco Bell now. They are closed, and she can't walk or scooter or bike through the drive through. I've driving through with her a couple of times a week, but in some ways, I think the loss of the freedom to go to Taco Bell hit her as hard or harder than losing on campus classes or not seeing her best friend.

She was already struggling emotionally anyway. For a kid who loves animals and cares about the environment, there isn't much good news. Add a pandemic and shutdown on top of it, and it's a hard time to be 15. 

 

[WoolC]

59 minutes ago, PeterPan said:

Fwiw, I just thought your post was interesting. I agree, you didn't mean any unkindness. I do the same thing, just having no clue where someone is coming from and not even being able to imagine. I think it was a totally reasonable question. And I think that's why @WoolC shared, not to guilt anyone but to get it out there, in the open. I've been doing the same thing. I feel this need to share, to be able to SAY what's happening and not have it be HIDDEN. If someone died, you'd feel ok sharing. But if your kid needs a mood stabilizer or psychiatric meds we're like oh no, maybe I can't talk about that, maybe they'll condemn me and say I didn't try hard enough, didn't tell them about Jesus enough, whatever. And I'm like no, we tried EVERYTHING and it's the compassionate thing, the right thing to give them meds because for some kids right now it's THAT HARD.

And unless people have been in a house with it all day, they have no clue what it's like right now with some of these kids. My ds has had 4 good days in 6 weeks. Or is it 8? However long this has been going on. Four. The rest of the days it has been very hard, profanity, trying to decide if he's going to hit (he has that much awareness now, that his hand goes up and down, up and down, lol). It has been REALLY HARD. He rearranged my pantry in overt OCD stress level reactions night after night and then flipped out when I moved things. It's psycho to live with, very hard, surreal. And NOBODY to help, no where to go to take a break from it. None of the normal things we'd do are options. I'm scared I'll get burnt out from dealing with this level of stress. I'm having to take extra care of myself mentally because you get in these situations and are isolated and people don't realize what's going on and couldn't help even if they did.

Well that's all. I don't think you have to delete. I just found it interesting, no offense taken. I do the same thing when I'm trying to understand, and it was brave to put yourself out there and say it.

Yes!  Thank you for saying all of this better than I can right now.  And no, please don’t feel like you to need to delete Quill.  It’s important to talk about these things.
 

The stress we’re under is unreal, worse than anything I’ve ever experienced, and there is this feeling that it needs to be hidden.  If God forbid, ds was struggling in any other way we’d be reaching out for prayers, help and support publicly.  There’s a stigma with this that’s really hard to combat, the guilt as a mom is crushing.

I’ll check out the link, PeterPan, thanks.  We’ve ordered a vagus nerve stimulating device that pairs with a meditation app and some calming touch points as well for him.  I thought I’d start a thread on the learning challenges board about how those work for us once they finally get here with the shipping delays.  Praying for you and your ds too PeterPan and hope you all enjoy the Olive Garden takeout!

[Valley Girl]

1 hour ago, PeterPan said:

Fwiw, I just thought your post was interesting. I agree, you didn't mean any unkindness. I do the same thing, just having no clue where someone is coming from and not even being able to imagine. I think it was a totally reasonable question. And I think that's why @WoolC shared, not to guilt anyone but to get it out there, in the open. I've been doing the same thing. I feel this need to share, to be able to SAY what's happening and not have it be HIDDEN. If someone died, you'd feel ok sharing. But if your kid needs a mood stabilizer or psychiatric meds we're like oh no, maybe I can't talk about that, maybe they'll condemn me and say I didn't try hard enough, didn't tell them about Jesus enough, whatever. And I'm like no, we tried EVERYTHING and it's the compassionate thing, the right thing to give them meds because for some kids right now it's THAT HARD.

And unless people have been in a house with it all day, they have no clue what it's like right now with some of these kids. My ds has had 4 good days in 6 weeks. Or is it 8? However long this has been going on. Four. The rest of the days it has been very hard, profanity, trying to decide if he's going to hit (he has that much awareness now, that his hand goes up and down, up and down, lol). It has been REALLY HARD. He rearranged my pantry in overt OCD stress level reactions night after night and then flipped out when I moved things. It's psycho to live with, very hard, surreal. And NOBODY to help, no where to go to take a break from it. None of the normal things we'd do are options. I'm scared I'll get burnt out from dealing with this level of stress. I'm having to take extra care of myself mentally because you get in these situations and are isolated and people don't realize what's going on and couldn't help even if they did.

Well that's all. I don't think you have to delete. I just found it interesting, no offense taken. I do the same thing when I'm trying to understand, and it was brave to put yourself out there and say it.

Bolding the part that resonated with me. You can struggle for literally YEARS to find things that help and get your kid on an even keel and then that's suddenly taken away and you're left without real options or support. The stress is incredible. And, frankly (and the reason I'm staying off the covid threads) that stress is compounded right now by armchair experts who don't seem to get that there are other critical situations that, for some families, outweigh or at the very least match the risks of this damn virus.

PeterPan and WoolC, I hope things open up enough for you to get the essential help you need. The stress of dealing with these issues can be unfathomable if you haven't lived it.

[fairfarmhand]

3 hours ago, Quill said:

I am so sorry, Wool C. 

I am considering deleting my posts on that subject because it feels obtuse to me, even though I did not mean to be crass. I was doing that thing again...thinking my experience must be like others’ experiences. So, I apologize for my post. 

I so much hope your family can return to full mental health. 

Oh Quill...don't feel bad. You weren't being rude, you just didn't know. 

Most people really only know what's right in front of them. That's what I love about this board. It's opened my eyes to experiences and perspectives that I just have never encountered and helped me reframe things in my mind.

Don't you hate blind spots? We all forget that we all have them and then we step in it and CRINGE! You're not the only one.

[HS Mom in NC]

8 minutes ago, fairfarmhand said:

Don't you hate blind spots? We all forget that we all have them and then we step in it and CRINGE! You're not the only one.

Yep.  Been there many times.

[PeterPan]

1 hour ago, dmmetler said:

for my DD, one of the biggest Losses has been Taco Bell.

Thanks for sharing that. At least it doesn't feel so crazy, lol.

[PeterPan]

@WoolC I've said this before, but have you looked into interoception? https://www.kelly-mahler.com/what-is-interoception/  You can start here then do her online curriculum and finally buy the printed materials and implement them. Most of what you're looking at (like that Coping Kids software) is good but has a really high starting point or an assumption that the dc can tell what he's feeling. or it's something you do to him. So to move over to him paying attention to his body, that's a shift. And even just a small amount of effort there, however seemingly ill done, pays big rewards stimulating that part of the brain. 

So working on interoception right now might be really high value, pivotal. I can tell you that mind/body connection is something they work on in psych wards and in therapies. And to get something that goes so far back to basics that our kids can get it, that's amazing. Kelly just linked a study on her FB page showing that caregivers (both parents and professionals) CONSISTENTLY OVERESTIMATE the person's interoception. In other words, if you think he has self-awareness and interoceptive deficits, they're probably even worse than you realize. I hang on a group for adults, and the things people can say as adults, when they finally start working on this, are striking. It should be a tier 1 intervention. Hard to do if he's flipping out. But if he's calm enough at all to work on anything, it's something I'd be doing.

[WoolC]

6 minutes ago, PeterPan said:

@WoolC I've said this before, but have you looked into interoception? https://www.kelly-mahler.com/what-is-interoception/  You can start here then do her online curriculum and finally buy the printed materials and implement them. Most of what you're looking at (like that Coping Kids software) is good but has a really high starting point or an assumption that the dc can tell what he's feeling. or it's something you do to him. So to move over to him paying attention to his body, that's a shift. And even just a small amount of effort there, however seemingly ill done, pays big rewards stimulating that part of the brain. 

So working on interoception right now might be really high value, pivotal. I can tell you that mind/body connection is something they work on in psych wards and in therapies. And to get something that goes so far back to basics that our kids can get it, that's amazing. Kelly just linked a study on her FB page showing that caregivers (both parents and professionals) CONSISTENTLY OVERESTIMATE the person's interoception. In other words, if you think he has self-awareness and interoceptive deficits, they're probably even worse than you realize. I hang on a group for adults, and the things people can say as adults, when they finally start working on this, are striking. It should be a tier 1 intervention. Hard to do if he's flipping out. But if he's calm enough at all to work on anything, it's something I'd be doing.

Yep, we started working through her interoception curriculum back in January.  He’s come a long way in being able to express his needs.

[PeterPan]

40 minutes ago, WoolC said:

Yep, we started working through her interoception curriculum back in January.  He’s come a long way in being able to express his needs.

Yay, I had missed this!!!! So exciting. And that puts him in a much better position to take advantage of the other things you're giving him. Just curious, is he able to communicate for body scans and emotions or is his language shutting down because the feelings are so big right now? We've been working on some nonverbal response forms with my ds because his language for body scans has been even more shut down than normal. We know he's feeling things, but it's easier for him to get it out with nonverbal methods. 

[MercyA]

Well. Color me happy. We are staying closed until the middle of June! From what I understand, it is largely for logistical rather than moral reasons. I'll take what I can get at this point. 😉