Huge venting session but also looking for suggestions
Libby was discharged two days ago from the residential treatment facility she was admitted to 36 days ago. As some of you are aware we’ve been in a mental health crisis since July 2017 when we discovered she was having hallucinations, and we’ve been living in a revolving crisis for much of the last two years. So her discharge was a completely unexpected surprise. It’s taken me two days to understand what happened because initially we were told insurance wouldn’t authorize more care. The treatment team 100% blamed insurance for not authorizing more care. It wasn’t just one person - it was the therapist, psychologist, and psychiatrist.
So, in a self-righteous advocate’s fury, I emailed my Case Manager with BCBSTX that I would hold them legally liable if anything happened to my child because of their refusal to continue her care. I called the decision reckless and criminal. The Case Manager’s response 12 hours later was baffling - BCBS had not only authorized her continued treatment, but she still met the clinical criteria for care. The case manager with BCBS was baffled that she’d been released.
Next, I thought someone dropped the ball. A mistake had been made, someone didn’t communicate to the right person at the right time. So I contacted the utilization management team for both the facility and insurance to find out what happened. As it turned out, both were aware of the approval of more treatment, had communicated the information, and it was a treatment team decision to release her.
If you’re lost or scratching your head at this point, you’re not alone. I reached out to the treatment team again only to be told, yes, the treatment team made the decision. Without consulting me. Without even f*ing explaining it properly. Lying to me the whole time. Did they think I wouldn’t take action on it? They obviously don’t know me very well if they thought for a moment I would just let that go. I FIGHT for my kids. Every single day. And if that means I have to tear the insurance company apart brick by figurative brick, I will do exactly that until I get what she deserves. That’s not to say others don’t but I won’t rest. My husband says I’m relentless in advocating for our kids and it’s something I’m good at. And there’s nothing that will trigger my self-righteous indignation more than feeling like things aren’t fair, for them in particular. I’m a passionate advocate for my children and would have raised holy hell on her behalf to get her treatment. But now, the wind is out of my sails and I’m baffled. We went from a psychiatrist who was willing to properly diagnose her with schizophrenia to her suddenly labeling her symptoms as trauma-based anxiety. WHAT?! Of course, she has trauma-based anxiety! Jesus, even I knew that! But it’s trauma-based anxiety because she sees things that aren’t real and can’t tell the difference! Or are they subtly accusing me of my child being physically abused in some way? Is someone abusing my child and I don’t know it? If she’s being abused, I cannot tell it. And she says no one is touching her inappropriately, no one is hurting her. But still I wonder, does she know something I don’t? Is she hiding something from me? Did she disclose something to the team I don’t know about? They legally have to tell me if she’s in danger so it can’t be that.
I have done extensive research on anxiety, I’ve read the studies, and I’m no dumb bunny. I may not know everything there is to know about medicine, but the basics are pretty clear to me. Yes, anxiety can lead to mild hallucinations of a visual or auditory nature. But they are mild! Not full blown terrifying visions of creatures from another world dripping blood from their fangs and claws. She sees things that have no logical explanation at times when she’s not even stressed! There are no identifiable triggers, it’s completely random and surprises the hell out of her every time. Sitting in the car yesterday she says a werewolf just appeared out of thin air on the seat beside her. Not there one moment and poof - there it was. Which leads to anxiety and fear, even panic. Which is logical and absolutely understandable. If random realistic beasts appeared out of thin air near me, I’d be scared out of my mind. Anyone would be. She no longer runs away screaming. She has learned some ability to cope with it. The terror she lives with all day every day is enough to rip a hole in my soul some days. And she fights it! Every day - with courage, and grit, and sweetness, she fights for sanity. She wants desperately to be normal and does everything she can to be that way, despite all of her symptoms. It’s so unfair.
I am so damn tired of doctors treating the results of the symptoms instead of the symptoms themselves. What is it going to take for me to get them to recognize this for what it really is? It doesn’t fit in a nice neat little box. I get that. But what do I have to do? Am I just dreaming to think I will ever get her diagnosed before 18 so I can protect her and take care of her? Is it just impossible? Am I fighting the wrong battle?
They will tell me they think it’s schizophrenia but she’s too young to diagnose. What is that? Is there some law I don’t know about? How can it possibly be ethical to misdiagnose or underdiagnose someone and give them treatment as a result? She is not getting the full benefits of proper treatment because they won’t diagnose her properly. I can’t get anywhere for her - No SSI, no Medicaid. The financial burden of this is all on us - and it’s horrendously expensive. $120 a week for her therapy alone - $480 a month, and I have no idea where I will find that money. I make $33K a year supporting 4 people now that my husband is home full-time to take care of the kids. That’s $6,200 a year, almost 19% of my income. Who can sustain that?
The only thing to come out of this is an emotional disturbance (ED) label for school, which will put her into a special education classification, but she already has that because of dyslexia. It might allow for a smaller class size in middle school, and more one on one help, but that may be it. She’s already getting everything she can from the school system. She’s been getting unwritten weekly counseling from the school counselor so we’ll formalize that. We’ll have a formal ARD in April or May to prepare for her transition to middle school. Which scares the crap out of me in and of itself because if kids are tough in elementary school, they become vicious in middle school. And she’s a target because she’s different, so that will get worse.
Don’t get me wrong - I’m grateful. I see improvements in her. I’m thrilled she’s home. It’s where we want her to be. But not if she’s still struggling so hard every single day. The problems are NOT solved, by any means. And we don’t know what we’re supposed to do with her at home. Or school. And things likely will get worse once again. Whether it’s a month or three or six, it’s almost guaranteed we will be back here again. And that just infuriates me to no end. There’s so much more that could and SHOULD be done for her. So WHY are the people who are responsible for doing that, refusing to help her? She’s trying, she’s doing everything they tell her, she’s putting in the effort. So am I. So is her father. So is the school. So why won’t they help her further? Why did they just stop?
Can anyone explain this? Why have we been battling for so long only to keep ending up in the same place? At this point, I need therapy from the stress of it all! Where’s my advocate? lol