This blog is my place to vent and share resources with other parents of children of trauma. I try to be open and honest about my feelings in order to help others know they are not alone. Therapeutic parenting of adopted teenagers with RAD and other severe mental illnesses and issues (plus "neurotypical" teens) , is not easy, and there are time when I say what I feel... at the moment. We're all human!

Sunday, October 9, 2011

Getting Burned

Kitty has now been in the hospital for 6 days. She was home for only 7 days after her last hospitalization and honestly should have gone back sooner, but Bear had a neuropsych appointment (free through a University research group!) that we couldn’t cancel, and so she came with us. We knew that she would be fine while being supervised by all the grad students and she loved it. Plus the hospital tends to discharge patients on Mondays so we knew they’d be more likely to have a bed available if we waited until Monday.

Despite the fact that she is obviously not stable, it is not possible to keep Kitty at the hospital longer. Technically Medicaid only pays for 5 days. If they keep her longer it will only be if they can justify it based on her behavior. I spoke to the hospital social worker Friday morning and he warned me that she seemed stable enough to send home that day (at least according to Medicaid standards). Since she shuts down and internalizes if she possibly can, I asked him if I should, as her attachment therapist puts it, “apply therapeutic heat” aka “poke the bear” to get her to show enough emotion to qualify her to stay. He said he couldn’t tell me to do that, but I chose to read between the lines and decided to do it anyway because this weekend was going to be nuts and I knew she couldn’t handle it:

7am –noonish Garage sale (NOT my first choice to do it this weekend, but I was already committed)
9-noon Bear has Saturday school detention (for skipping school to joyride in the borrowed car)
3-4pm Bear has therapy
4-? Ponito has a soccer game
5-7pm Bear has to be at the University for neuropsych testing (which I was supposed to be working on all the paperwork for, but didn’t have time)
And to make the weekend complete? Grandma and Poppy are out of town so won’t be helping out like they usually do and we won’t get respite Saturday night.
9-12pm Church (Bob teaches Sunday school)
12:30 – 3pm Lunch at Grandma’s! (Assuming she’s up to it after being out of town all weekend)
2-? Ponito has another soccer game

Plus throughout the whole weekend I knew I was going to be on the phone trying to find out how/if to get funding for residential treatment for Kitty. We’ve always know that Texas ranks 48th in the country for mental health services, and were blessed to be warned by my friend Lisa to have residential treatment written into our adoption subsidy agreement. So when I finally tracked down enough proof that Texas Medicaid wasn’t going to pay for residential, and the only place that would take her does sliding scale fees (which we can’t do because Hubby makes too much and they don’t take into account our debts).

Of course if they decided to send Kitty home on Friday anyway then that “therapeutic heat” was going to burn ME in the bum! On the phone Friday, Kitty asked me if she was going to be allowed to ride the school bus (not a privilege she’s eligible for until Level 2) . I chose to let her know that not only was she still not going to be allowed to ride the bus, but that I was asking the school to provide supervision during less structured times (between classes, lunch…). She immediately told me she wanted to hang up (our calls are usually only 5 minutes anyway), but I made her stay on for a few minutes longer to really turn up the heat and she actually decided to process this with her social worker. I’m assuming it “paid off,” since she’s still at the hospital, but of course now she’s furious with us.

The complicated part is that Nebraska has decided NOT to pay for residential treatment despite our adoption subsidy agreement. So I’ve been on the phone to everyone trying to figure out next steps.

Here’s what I found out so far: Nebraska has “revamped” (read as “broken”) their Medicaid system. Now mental health is no longer considered a medical issue so is treated differently. Anything that can’t be fixed in 90 days of RTC is considered “chronic” and therefore untreatable. So ADHD, Autism, RAD, ODD, Conduct disorder… no RTC coverage. The criteria is that the child has to not be bad enough for acute care, but need more than therapeutic foster care (which probably has to be tried first… at $88/day out of our pocket). The criteria to be hospitalized that she meets is feeling suicidal. If she doesn’t appear to be making progress, then she’s discharged. If she makes enough progress to not appear to need RTC, then she’s discharged. First priority for placement would be IN Nebraska, not Texas. If she gets physically ill while in the hospital (appendicitis, asthma attack, thyroid issues…) it comes out of our pocket. To top it all off, we would have to give up Texas Medicaid to get on Nebraska Medicaid, and would be taking a chance that we couldn’t get it back. Since her current meds cost over $2K/month… that would be BAD. So looks like we won’t be making the trip to Nebraska after all.

I have no idea how we’re going to handle her being home. Honestly while she might do some self-harming (80+% of the time she doesn’t even leave a mark), I don’t actually think she’d commit suicide. I don’t think she’ll use an eraser on her body again either! It hurt too much. BUT she’s still very emotionally volatile and unstable.

I talked to our EMDR, trauma therapist on Friday night. For years, she has been the only one saying Kitty needs RTC, but since she was the ONLY one saying that, I'd kind of decided that she was over reacting, because my Kitty isn't usually violent, is attached (anxious), and was making progress (when we got her at age 11 she was practically feral, and now can take some direction... if phrased correctly and she's in a good place emotionally).

This time I was ready to listen to the therapist and she said in her 30+ years of working with seriously disturbed teens, that Kitty was the worst she'd ever seen. She thinks that there is something else wrong (besides bipolar, RAD, C-PTSD, ADHD...). She doesn't think it's borderline personality disorder or Dissociative Identity Disorder (multiple personality disorder) either (although Kitty definitely shows some signs).

Over the years I've readjusted what I expect from Kitty, and I knew she'd always have major issues, but I'm feeling pretty despondent now. Now that I have multiple pdocs saying she needs to be in long-term RTC, it makes it more real that she's probably as good as she's going to get, and this is pretty scary. Especially if we can’t get her stable.


Lisa said...

Augh!! so frustrating!

I understand the money aspect of this (although I resent it like HE&@ for all of us in this messy situation). The bottom line is this - WHAT DO WE DO??? If TX or NE will not pay for RTC, If no one can stabilize her enough to carry over into school or your home, if the psych hospital has a revolving door and seems to be ok with sending home a teen who can snap at any moment, then how do we keep our sanity and the rest of our family safe? Even if Kitty has not acted aggressively towards anyone but herself, she is still disrupting your family. She is still subjecting every family member to the constant stress and how long before the other neuroptypical kids start showing signs of this chronic stress? I know that the professionals are there to help Kitty, not the rest of your family (even though they sometimes act like they're there for all of us, don't be fooled, they will always put her needs first) so they aren't exactly going to be helpful in this regard, YOU are responsible for everyone.

She may not have BPD - yet, but many of the things you describe are symptoms of it. Maybe that's the problem, she has symptoms of so many different things that it's hard to pinpoint what to work on.

Praying for answers for you....

Anonymous said...

I'm so sorry this is happening to you! I've no answers, only sympathy and a bit of understanding. Placing Ms A was easy compared to the hurdles involved w/ Kitty. ... There are so many "if onlys" and the system is so, so broken. (Broken because, IMO, it used to work better than this. I firmly beleive that the "close the institutions" advocates did at least as much harm as they did good.)

Mary, where I hurt for you the most is what you've left unsaid. It isn't just that Kitty is attached to you. You have attached to her. You have given everything you have, and more, in trying to "fix" her, and yet so few people have understood or believed that your huge sacrifice was necessary...

The only actual "advice" I can give you is somthing that has helped me more than once. Rather than seeing in your mind a confusion of half-baked impossible answers for Kitty, take the time to figure out one "this would be best; we can live really with this" solution; a solution that you can't see how it can happen, but isn't completely impossible without a miracle (perhaps an RTC willing to take her for a year w/ no cost to you, but not Kitty waking up one morning completely cured.) Get that solution as clear as it can be in your mind. Write it down. (That is a very important step.) It isn't for obsessing on, or working only toward that solution, but for the clarity of knowing it. Through your knowing what the best answer is, "the universe" can (and often does!) work to meet that need.
It worked for Ms A even though I didn't realize I'd sent the message out (I knew foster care was the best answer for her; I wrote it down and told it to others, but I also thought it was 100% impossible.)
I wish I could do more for you.

{{{ hugs }}}