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!

Thursday, October 7, 2010

Now What?

I stopped by the MHMR (place where the kids get psychiatric services) to pay a bill and pick up a prescription for Kitty. While talking to the financial services lady it suddenly occured to me that she works with Medicaid all the time so she might know how you're supposed to get psych evals (which Medicaid won't pay for) to qualify for services (which Medicaid does pay for). Her answer was that unlike our private pay psychiatrist, theirs does his own psych evals.

We started chatting about why I wanted Bear to be diagnosed with a personality disorder, and I all of the sudden I had no idea. Since I tend to talk through things I kept talking anyway. Here's what I told her:

  • Bear is diagnosed with RAD which is a childhood disease. In less than a year he won't have that diagnosis anymore. Obviously he won't be miraculously cured so we need to know what he does have so we can continue treatment.

  • No one knows what RAD is, and those that do do not know how to treat it in older teens (does anyone?) so if we have a different diagnosis maybe we can get more help from the school and others.

  • Bear wants to leave our home and move in with his biograndfather in rural Oklahoma the minute he turns 18. I need him to have all of his "ducks in a row" so he can access the services he needs rather than scrambling to get new psych evals and diagnoses.

  • I want Bear's biograndfather to know what he's getting in to, and he won't have heard of or understand RAD.

The psychiatrist's office was right next door to the financial lady's office and he apparantly heard his name so he stopped by to see if I had a question for him (cool!). I was totally surprised by his appearance and couldn't think of any of the real questions I had for him (not cool!). So I basically just repeated my question about personality disorders.

The pdoc said he "doesn't mess with" personality disorders. There are no medications for treatment and it basically doesn't change anything regarding therapy either (and Bear qualifies for services through his bipolar disorder) so he didn't see a need for adding this to Bear's diagnoses. Plus, he didn't really think Bear had any of them. The pdoc then said, "see you tomorrow" and disappeared.

I mentioned to the financial lady that we don't have an appointment for 2 more weeks because we'd gotten bumped (not our fault) from his last appointment at the beginning of September which was supposed to be 4 weeks so we were going on 8 weeks now and had not heard a peep from the standby list. The next morning I got a call saying they had an opening for that afternoon!!


Now I'd had a bit more of a chance to think of all the things I should have asked the pdoc about!

I played hooky from work and got together with a good friend who has severely emotionally disturbed teens/young adults (hers are biokids so they don't have the exact same issues, but they also have bipolar and her youngest attends the Special School that Bear attends (in fact she's the friend who "spilled the beans" about the program's existance, because her oldest son used it). She has legal guardianship of her 21 year old son and is in the process of getting it for her younger daughter.

She answered a LOT of my questions about legal guardianship, including the fact that the person doesn't have to be completely incapacitated. There are areas in which her son is able to handle his life (he can hold a job and mostly handle money, but he can't handle his medications or fill out forms or applications).

We talked about legal liability (what would happen if Bear stole a car and totaled it - would it be our financial responsibility? - No, it would be his. If he refused his meds, became psychotic and beat someone up? - We could have him involuntarily committed). She wasn't as able to answer these questions because her son does not have a criminal bent or issues with drugs (although she was able to talk a little about alcohol issues).

She knows my kids very well (was even our "nanny" for a brief period of time), and joy of joys, she backed me up on a lot of the things I've been anguishing about lately - not letting my teen daughters hang out at the mall, not letting Bear go to the football games unsupervised, not letting the girls and their male and female friends wander the neighborhood on Halloween unsupervised... she did say I'm a little over-protective, but that was understandable. I couldn't believe how much I've been craving hearing just one person say I'm doing a good job. My love tank is way too empty!


So I went to the pdoc appointment ready to talk. I made a mistake though. I didn't say at the very beginning that I wanted to have a quick chat at the end so we wasted part of the time talking about coaching four year olds playing soccer and other non-related stuff while the pdoc tried to load the med changes in his computer and get Bear to talk.

The pdoc assumed that we had gone ahead with the plan to take Bear off all his meds. I quickly reassured him we had followed his advice.

Of course all Bear would say was everything was "fine." He was doing "fine" in school (I clarified that he was doing well when he wanted to, and failing the rest of the time. His sleeping is "normal for me." So I interpreted that as well - he is still getting 5 or fewer hours of sleep at night and last night had gone to bed at midnight then woken up at 4am and couldn't go back to sleep. The pdoc didn't ask about his level of irritability or anything. We mostly focused on Bear's sleep issues. The pdoc said a lot of people only need a small amount of sleep, but I reminded him of the sleep study saying Bear isn't getting enough REM sleep.

So the pdoc prescribed yet another sleep med - Remer*n. Bear tried it last night and claims it kept him from sleeping. I don't know whether to believe him or not since he doesn't want to take any more meds. Last night at 10:30pm (an hour and a half after room time and an hour and a half after entering the bathroom), I knocked on the bathroom door and told him to wake up since I assumed he'd fallen asleep in the bath again. He's not supposed to take baths at night since he takes hot water heater draining ones every morning, but he does it anyway. This morning I asked him how he slept and was told it kept him awake. I mentioned the sleeping in the tub (I could hear the water splashing after I knocked so I know he was in there) and he denied being asleep. It was morning and Bear thinks no one should be allowed to ask him questions in the morning (really any time!) so that gives him the right to be rude. So he was, and I dropped it. Then in the next breath he had the nerve to ask me to make him cookies?!

The pdoc then said if that didn't work we could try a med designed to keep him awake (which is a big issue for Bear at school). Pr*vigil. Ummm we already tried that. The residential treatment center had given it to us for ADD (since Bear couldn't tolerate any other meds we'd tried). Over a year later we finally determined it had no effect on his attention/focus so we dropped it. The pdoc asked the dose (which I didn't remember) and then said it wasn't working because the dosage wasn't high enough. Don't know how he knew that since we didn't know what the dosage was, but whatever.

Then he asked why Bear was taking Ser*quel during the day if Bear was having trouble with sleepiness? Ummm because you switched it to day and said it wouldn't make him sleepy? *sigh*


So I told the pdoc I wanted to talk and he said we were out of time, but since I looked pretty insistant, he said OK as long as it was a short question. In my mind this was a yes or no question so we sent Bear out of the room and I told him we were considering legal guardianship and wanted to know if he would sign the papers.

Long story short, he said, "No." He thinks we should just let Bear try it and if/when he falls on his face, we pick up the pieces and then we can approach legal guardianship. He didn't see an issue with the fact that Bear is planning on leaving the state and being out of reach of our support. He thinks Bear will be compliant with meds because he is now when so many of the teens he treats are not.


What to do now? The pdoc has seen Bear 3-4 times now for med management. I was hoping based on a couple of statements he'd made in the past that he "gets" Bear, or had read Bear's files, but he obviously hasn't (he asked for the discharge info from the residential treatment center which is already in Bear's paper file). Basically anything that's not in his computer (which as far as I can tell only contains recent info) doesn't exist.

So we're back where we started.

I feel a moral/ethical obligation to try to give Bear what he needs to at least have a headstart on being successful, but I don't really know what that looks like. It feels like everyone around me just wants to leave things at status quo.

I am filled with dread at the idea of the next 10 months of "status quo." This is not what I want for Bear. This is not what I want for me, because when I am around Bear I can no longer be a warm, nurturing parent. This is not what I want for the other kids, because they deserve/need a warm, nurturing parent - not one who is triggered and emotionally shut down. This is not what I want for my marriage either.

I'm stuck. I don't know where to go from here. I don't feel safe loosening the reins, nor do I think Bear really wants me to. I can't handle the pressure anymore from everyone saying I'm doing things wrong. I'm running on empty and I'm breaking down.


RADMomINohio said...

First of all, who is saying you are doing things wrong?? Even if you are doing some things wrong, you definitely don't need someone telling you that. I say that knowing we all want support and advice and want to be told if we are doing something wrong as long as it is accompanied by the right way to do it and why? I can definitely be talked into doing something if it is right and makes sense. Right or wrong, I have learned that I don't have the emotional energy to tolerate people who work against me and alienate them. They are moved outside my circle of concern. If it's a medical professional, I find a new one that isn't working against me. If it's a friend or family member, I ask them to love and have faith in me enough to not question me. If that doesn't cut it, then they are moved outside my circle of concern. We are on a mission to save our children. There is enough variables we have no control over to contend with.
Can you tell that fired me up? I have no patience for people like that. It's so counter-productive and I feel like I have to be very efficient with my emotional energy because it's my life source and when it's squandered, my life is at threat.
Now, correct me if I'm wrong but what I'm getting from your post is that the reason you are running on empty is because you don't have a plan with Bear. That is probably overstating the obvious but what I mean is that I can sooo relate. I feel exactly as you described with any issue with Penelope and our life where there isn't a plan. With my experiences with Penelope, I've lost that fundamental false perception of an invisible safety net that I grew up with. "Everything is going to be okay." "It will turn out okay..." NO IT WON'T! I want to say. Not without a plan. Not without effort and forethought. And until I have that plan, I become obsessed with educating myself with all the options, figuring out what would be best and getting it in place if possible, with the knowledge of what the backup plan would be. Then I can move on and have a better sense of calm. But I've also learned that there is always something going on in our lives that it's that state of unknown. And I know how I can allow it to affect the way that I relate to Penelope, to my parents and family and to my job. So I try to compartmentalize. Not so good at it but working on it. Mentally be in the now and just make a conscious effort to be present in the conversation, event or relationship with whomever I'm with. Being so close to it, it's hard to recognize when I'm not spending enough time with Penelope in a positive way, versus worry about the list of problems she is dealing with and how to fix them. Oh, and my anti-depressant is A.W.E.S.O.M.E. lol.
Anyway, I know I'm talking more about me than about you but I can relate and hope that you get some sense of knowing that you are not alone, that you are not crazy (at least not more crazy than I) and that I'm thinking about you. :)
I do think that your pdoc is worthless and if there is a way to a get a new one, that would be great. I think your out is that he said he doesn't "mess with" personality disorders. If he doesn't "mess with" them, than how can he have an an opinion on it? Even with that, to just see him 4 times over such a long period of time and remember his case and KNOW him and feel comfortable enough to have an opinion at all? Doesn't sound right to me.

marythemom said...

Thanks RAD Mom. This comment got really long so I'm moving it to a post.

I wish you were in TX instead of Ohio! I think we would be good friends. We think a lot alike.