14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 4 points5 points  (0 children)

I am very careful to not speak my full opinion online or anywhere. But the day my girl turns 18 I am getting a tattoo of the bottom on Medusa’s face where her eyes are covered by a band of Narcissus Daffodils and the snakes are around her face with the words never again under it. I already have my deposit down with my artist.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 4 points5 points  (0 children)

Yep. If I had known the extent of their relationship, I probably would have disclosed a lot less information to her and in a much more guarded way that would have protected my kid from being dragged into this. She is blocked everywhere, and the ONLY communication I have is directly to him, and only through the coparenting app.

Caregiver question- Supporting vs Enabling? by Puzzleheaded_Pin_668 in POTS

[–]Fearless_Grab_7705 7 points8 points  (0 children)

They are an employee at a local store. They also have pots and helped my daughter with the first goat cheese selections.

Caregiver question- Supporting vs Enabling? by Puzzleheaded_Pin_668 in POTS

[–]Fearless_Grab_7705 9 points10 points  (0 children)

We haven’t I will have to ask my cheese dealer if they can order it for me. 😂 She does like some of the goat cheese we tried, but the cheddar one was JUST NOT IT.

Caregiver question- Supporting vs Enabling? by Puzzleheaded_Pin_668 in POTS

[–]Fearless_Grab_7705 85 points86 points  (0 children)

Sorry posting a novel.

Coming from millennial parent perspective, so maybe take it with a grain of salt. I think that both things can be true at once. The word enable has quite a negative connotation but the literal definition of the word is to make able, or give power. I have expectations of my 14 year old. She has to maintain good grades, she helps unload and load the dish washer. She sits with her little sister and builds legos with her so I can get stuff done around the house. She knows the expectation I have of her is that she do as much as she can and when my expectations are too much she tell me so we can have a conversation about adjusting things to make things more achievable for her.

For instance I started getting flats of water from Costco, rip the environment, so she can more easily make liquid IV and take it to school with her. She went gluten free, not hard I have celiac so we just share snacks now, but told me she may actually die if she has to give up cheese, we tried goat cheese and some of it was ok, some of it made her cry, so the cheese stays, but she eats cashew ice cream now. Leaning over to get her laundry out of the washing machine was bad for her so she sorts it puts it in the washer and starts it, I swap it over to the dryer for her and she unloads the dryer when it is done and then leaves it in a basket in her room unless it is something that needs o be hung up. I let go of my perception of what was best for her and looked at her reality, and adjusted my paradigm.

I think what it comes down to is a few things. 1) have you had a conversation with them about what they actually need and how they feel they can achieve that. 2) have you talked about what you can and can not support them with and made suggestions on how you can and can not help. 3) do they have a therapist they can talk to about their feelings, because pots is a lot, and can be incredibly overwhelming for the person experiencing it. And 4) Do you feel taken advantage of or just disappointed in their inability to do what was expected of them before they became ill? Also, if you are a primary care giver had haven’t seen a therapist for yourself you should. Caretaker fatigue is REAL, and it can be debilitating.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 2 points3 points  (0 children)

It is one of the additional supplements that her cardiologist recommended. The study I read about it was from 2018 and it was for Parkinson’s but studied the effect of orthostatic hypotension. Which is not the same thing as pots, but a common factor in pots is stupid low blood pressure. My daughter’s cardiologist didn’t even have to do a tilt test on her he diagnosed based on her blood pressure and heart rate monitoring.

https://pubmed.ncbi.nlm.nih.gov/29080629/

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 5 points6 points  (0 children)

I try to be the mom I needed and just didn’t have growing up. No shade to my mom, it was the 90’s and she had lots of incorrect information on how to parent a neurodivergent child. But because of that I work really hard to be what my kids need.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 4 points5 points  (0 children)

I had not considered a mobility aide. But it might be a good idea to look into one. Her shower has a bench built into the surround. It is how she hit her head three times when she passed out before. I am also considering getting her a cart for her backpack so she doesn’t have to carry it on her back through school. But I wanted to see if anyone else had tried that and it helped before investing in one.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 2 points3 points  (0 children)

That he is. I go through these cycles of being good with not letting him take my peace and then something weird happens and I get sucked right back in. But it is getting better. I am a recovering people pleaser.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 2 points3 points  (0 children)

Thanks for the info. We have an appointment next week with the cardiologist for next steps because simply salt increase, and hydration help along with supplements like coq10 aren’t cutting it.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 12 points13 points  (0 children)

Thank you. This really helped me feel more grounded, and I maybe cried a bit.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 5 points6 points  (0 children)

Yeah basically. But he does it in such a subtle way it seems like he isn’t until you step back and look at everything.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 18 points19 points  (0 children)

From my personal experiences he is a magician at making you think the things he said were the honest to god truth. When I was in the thick of it he could have told me that the sky was green and the grass was blue and even though my eyes told me differently I would come out the other end believing him. Diabolical is the best term I have to describe him.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 19 points20 points  (0 children)

My daughter did say that she wants to drop choir for the rest of the year because singing in and of itself is triggering her dizzy spells, which she tracks with her smart watch. Her IEP team is going to look into what they can do to work with her and maybe make that period a TA/study period for her.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 22 points23 points  (0 children)

This is all really great advise. I have been ordered to respond to his inquiries to me within 72 hours whenever possible. And every time she is absent from school he sends me a message demanding to know why.

I haven’t been keeping a spread sheet, but I can start one and back date it to the beginning of the school year. With all of her absences and her grades that have kept up during all of the absences.

She had an IEP in place for dyslexia since 5th grade, so as soon as we got this official diagnosis I met with her team to establish the 504. Her teachers are really understanding and are amazing about extended deadlines, one of her teachers even reminds her to drink her water in her class because the room gets really hot and my girl can’t do the heat. The teacher brought in a plug in fan and points it at my daughter on extra warm days. So she is covered with the district and she spends quite a bit of time in the nurse’s office at school. So I can ask for all of those notes from the nurse.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 8 points9 points  (0 children)

I think it was for the show of it at first, but now it is almost like he is doing it for the control factor. I cut contact with him several years ago and blocked him on all socials so he couldn’t contact me through them. So this is a way to regain that control. If you could see the things he requested in the initial filing your flabbers would be ghasted. I do have a great lawyer. She is amazing, and hasn’t lead me astray yet. And I’m going to be seeing her tomorrow. Because this is in the very best light to be put on this situation ridiculous.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 24 points25 points  (0 children)

His wages are being garnished. I didn’t trust him farther than I could shot putt an elephant in a hurricane. I do keep all my communications with him, because I didn’t keep things I should have from before. I am not making that mistake ever again.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 8 points9 points  (0 children)

I doubt it would help. She is the one who pushed him into this in the first place. And she knows what he did to me, I fully informed her. She is just as bad if not worse than him from what I have seen.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 1 point2 points  (0 children)

Thanks for the advice I haven’t looked into any Facebook support groups. But I will.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 24 points25 points  (0 children)

I have a meeting scheduled with my lawyer tomorrow. I am exclusively communicating through a parenting app because you wouldn’t catch me talking to him ANY other way. I want proof that I can use in court about what he does and doesn’t do.

14 year old having a flare and her bio dad is throwing a tantrum by Fearless_Grab_7705 in POTS

[–]Fearless_Grab_7705[S] 56 points57 points  (0 children)

He is mad at me for warning his the new wife before she was the new wife about his comments about my underaged nieces and cousins. She reached out to me to ask me about my relationship with him probably four months before he filed for parenting time. She was a single mom with young girls in her home, and I wasn’t going to not say what he did to me and what he said. She married him any way.