Checo we are coping

Moose

I dont think shes unhappy, but rather overwhelmed. She says that she really likes the new school and wants to go, but just cant.

Yes, she wanted the school change as well, but also not. She misses her friends, we try to set them up outside of school instead now, but its not the same. She was very involved in the decision to change but not to where, we applied to 3 different ones after interviewing principals and staff at several more and choose based on what they said they could do for our situation. Location as well, so that new friends she makes would be in somewhat close proximity.

I do believe her, now. But it took some time for me to understand that i really dont understand everything and just have to take her word for it. I have been trying to explain that to her, that i might not always understand, but that i trust her. Its a process for both of us. Im sorry you had to go through that, because what I do understand is that it take a big toll one someone to be gaslit like that.

Everyone seem to be giving similar advice here, less pushing and let her figure it out, with our help of course. Im just afraid that giving it too much time will leave her behind, in school as well as socially. To be clear, I dont care about grades or performance in school, just that she might loose connection with friends in her age.

I think youre right, we have talked about it and she says she misses some of the friends from her old school. We try our best to maintain her connection with the old crew, its not very hard as they mostly live in our neighborhood, but she also avoids them to some extent because she feels guilt towards them having to stay in a school thats as bad as it is. She was involved in the decision to change school, it was a very hard one to make. But despite the problems it comes with we have no regrets because of the complete lack of interest/knowledge in the old school. We actually have a lot of insight in the new school as well, they are extremely communicative and helpful, so that helps a lot at least.

We have also already taken that step to stop demanding her to take the meds or even mention them (mostly, we can do better), very recently though. And we have a meeting with her doctor next week to discuss how we proceed

There is apparently a more medical part of it as well, being short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections and supposedly connected to autism in some way

I strongly relate to the gift part, christmas was always very messy before we knew and could explain to her relatives and make the adaptations needed to make it as smooth as possible.

Lately that exact video has been passed around in my extended family as well and everyone have reacted the same, “this explains a lot”. I will check out “I’m Autist, now what?” as well! Thanks for the tip.

I have never heard the term panda in this context before today, thought it might be something cute I could tell her. But it looks like another rabbit hole of information to take a deep dive into

To be a bit blunt, I have been thinking of meds as a way to reverse a downwards spiral, a way to get out of a rut. Then we could take further decisions together with her if its something she wants to continue with or not, after “the worst” is over. But hearing what you and others here have said that might not be the best way forward. I have learned a few important things today I think, and while I was of course hoping for a “just do exactly this and everything will be fine”-advice, I was not expecting it.

The gaps in knowledge was undeniable at her previous school, as apparent not only by our situation, but some other former classmates of hers as well. At least we left them with a lot of reading material and advice on how to handle it in the future, lets hope they read it and act.

Thanks and I will read up on that, it looks familiar at a glance and I suspect it’s stuff we have been reading about in another language

I think she is burned out already unfortunately, due to medication as well as other factors (mostly school related). We are currently working with a very lean reintegration plan for school to not have it go beyond what is hopefully repairable.

Sorry I was a bit vague there I think, school has pushed for a lot of thing related to ADHD/autism and school absence (although at the time we did not know about autism), but not medicine. More in terms of how we should behave towards our daughter, push her harder to come to school etc. Listening to them is something I regret deeply as it has definitely scarred my relation with her.

I know I have not been fully empathetic at all times either, especially before we got the diagnoses. She got ADHD diagnosed about 2 years ago and autism very recently, so its been a wild ride trying to learn everything and then everything again. The PDA part definitely put a twist to it as they are diagnoses that collide in many ways from what I understand. Thank you

I am very grateful for all insight given here. While its not a silver bullet, its another perspective we can take into consideration when trying to help her

The “We expect you to get better after taking this” part is interesting, because I was thinking that it was more in terms of “We expect you to take your medication”. Taking some pills is something she can control, but “getting better” is not up to her.

The unfortunate part of Strattera is that its a long lasting medicine, so just taking it sporadically is probably not very valuable. So something with more direct effect might be better actually, where she can have them at ready to take when its her choice. But then the ones we have tried had other shitty side effects

While i think i knew that, its so hard to not lean towards something that (from my perspective) seems to work. But you are not the only one here with this idea, I cannot overlook that and might just have to accept that meds are not for her. Thanks

I have no idea to be honest. Pivot I guess, just not sure where to

I am not surprised at all if this is a major part of it, it’s not something she has expressed though (which is completely understandable for a 10 yo I think) so we are only guessing. She took these meds for a couple of months before she stopped, several others before that (that didnt work for different other reasons).

I greatly appreciate every insight and idea I have gotten here. Im neurotypical myself so all I can do is try my best at understanding, and reach out to places like this to try and get a different perspective.

While we understand that a school change is difficult (for any child) and the things you mentioned about her previous experiences with meds, we have a hard time finding the connection. It might sound like a very obvious connection, but we have tried so many things to figure it out that the conclusion came pretty much from exclusion. So when you say there might be one still I appreciate that insight, we need to rethink that part.

We have tried trading it for things she wants and tried giving her some kind of choice in for example when she wants to take the meds or how, to give her a sense of ownership of the situation. We have told her it is ultimately her choice if she wants to take them or not, hoping she would feel the difference herself and choose to start again.

We definitely see the connection and think we have a pretty good idea why she is not taking the meds. A big part of the problem is that we have been told by school and doctors for a couple of years now what to do, and we have done as instructed because they are supposed to be professionals. And the result is like you described, she does not trust us fully anymore.

Im certain she feels better from the meds, but perhaps not directly. But all the fights and irritation that can be avoided has so many side effects. And we saw a very different person back when she took them, happy and at least more content. Its a bit of a catch-22 at this point and I just wish there was something we could do.

I do believe that the autism part of her is whats causing the most issues, PDA (Pathological Demand Avoidance, meds being the demand in this case) specifically. But like you say she is subject to outside circumstances all the time and specifically (I should probably have mentioned this one) a change of school at the same time she stopped taking her meds. Her previous school was garbage, the new one is miles better but we still struggle with attendance because of previous experience. We have really tried connecting the school and meds situations but not come up with anything that has helped either

My wife has taken facebook route and are in several groups about autism and ADHD, but we struggle to find anywhere that is specific to PDA and ADHD (problematic duo as much of their traits go against each other). We have tried to apply whatever trickery we get from the groups we are in (and of course all the doctors we are speaking to every week) but to no avail. We have gotten lots of good advice on other parts of this though, so it has not been in vein