I'm so sick of looking like I have Munchhausen by proxy. I'm tired of taking her to the hospital every other week. I'm tired of fighting so hard. She's currently in the hospital again, but she'll have to go back to school when she gets out, and they've made it clear they aren't going to make any more accommodations (which means she'll be right back in the hospital). She needs me, but I'm so drained.
Tuesday, November 29, 2011
I'm so sick of looking like I have Munchhausen by proxy. I'm tired of taking her to the hospital every other week. I'm tired of fighting so hard. She's currently in the hospital again, but she'll have to go back to school when she gets out, and they've made it clear they aren't going to make any more accommodations (which means she'll be right back in the hospital). She needs me, but I'm so drained.
Thursday, November 24, 2011
The pdoc also refused to write any notes helping us out with school. Well, that’s not totally true. She wrote a prescription saying Kitty should be “evaluated for homebound.” Which the school can easily ignore by saying they already did that. It’s time to find a new pdoc. One more thing to add to my list of things to do.
I did talk to Nebraska about RTC, and they thought they had a couple of weeks (as did we of course). They’re still waiting for information about the two residential treatment centers we’re interested in (Settlement Home and Center for Success and Independence in Houston). Once they determine what services are offered, then they'll know how much they can pay (assuming they approve) and then they can start negotiating with the locations, at which point we can start waiting for a bed.
Poor Kitty! I see no way to keep her from having to go back to school. Only consolation is that she may quickly end up back in the psych hospital (never this one again of course!).
Thanksgiving was lovely. We had lunch and dinner at my sister's house. Hubby made homemade rolls and they turned out perfectly! I made most of the sides. There was so much delicious food that we had leftovers even after eating both lunch and a dinner of leftovers there.
All 6 cousins (ages 9, 12, 12, 15, 16, and 18) played together ALL afternoon and evening. They played video games (mostly bowling and dancing with Mich*al Jacks*n - they videotaped the dancing- hilarious!!), they played outside on the teetertoter (after hours on it the girls were complaining of jelly legs! lol!) and noodled around with a soccer ball. Bear got a little bossy, but otherwise they had a great evening.
The guys watched football and my mom, my sister and I put together a puzzle. It was so relaxing. I even got in a little cat nap or two. I'd stayed up until 4am the night before.
I can't believe it, but I'm goign to go shopping on Black Friday. Santa is bringing the kids a W i i and the used game store has some previously owned systems on sale.
I can't believe how little Cmas shopping I've gotten done. The kids are hard to shop for this year! I miss the days when I could buy a few used toys and they'd love them.
Wednesday, November 23, 2011
Friday, I was told they wanted to take her off all her meds except for the Trileptal (weak mood stabilizer), because the doctor thought she was on too many meds. It was my understanding that this would be almost a med wash. I approved adding Seroquel XR to help her sleep at night.
Over the weekend I was told they wanted to add Wellbutrin (an anti-depressant, that can help with weight loss). I said I wasn’t thrilled about adding an anti-depressant, and that I thought she’d been on it before, so I wanted them to review her records before I approved it. It didn’t make much sense to me in light of them wanting to see what she was like without meds. I gave Kitty a heads up that she would be at the hospital for longer than usual while they adjusted her medication.
On Monday I was informed by Kitty’s case manager at the psych hospital that she and the psychiatrist had told Kitty about the “med wash” and that she wouldn’t be able to “skate” through this hospitalization waiting for her five days (what Medicaid typically covers) to be up. That they could keep her up to 6 weeks. She said Kitty looked like she was going to cry and admitted that she does pretend she’s better whenever she’s ready to go home. I tried to assure them that Kitty probably isn’t trying to manipulate the system. She’s mostly just homesick, and psych hospitals are not going to fix her issues anyway. Her biggest problem is trauma. You can’t fix that with meds, or a couple of sessions on calming techniques (she could probably teach the class! – she just can’t access it when she needs it). This is why we’re trying to get her in residential treatment.
The case manager gave me more information about why they wanted to replace Depakote with Wellbutrin: that it would help with her weight, worked as an anti-psychotic as well as an anti-depressant, and didn’t typically cause mania (unlike most anti-depressants). I questioned how this was a ”medwash”? but really didn’t get a good answer. Just that the doctor has a preference for different meds. I also wanted to know how do you replace a mood stabilizer with an anti-depressant? They’re not the same thing. I questioned why we’re not trying Lamictal, which is a mood stabilizer. Basically she didn’t have an answer.
So Tuesday I went to family therapy. I was late, and the therapist apparently didn’t hear the page that I was there so we got off to a great start. Kitty came in, and they announced that it was up to me, but she could be discharged as early as tonight. I WAS FLABBERGASTED! Kitty and the therapist start talking about all she learned in therapy (BS! BS! BS!). I just sat there stunned.
Finally, phrasing it as gently as possible to not trigger Kitty’s abandonment issues, I told Kitty of course we wanted her home, but how in the world can the hospital believe that taking her off most of her meds and then sending her home is at all the right thing to do?! The therapist had no idea that we’d been told Kitty would be staying for weeks. The case manager of course wasn’t working today and the pdoc was on rounds and unavailable. They got the case manager’s supervisor on the phone, but she didn’t know anything specific about Kitty.
When they finally realized I was REALLY unhappy, they assured me that when I approved the Wellbutrin, which I was assured was really a miracle med that wouldn’t cause mania even though it’s an anti-depressant (Bear takes it so that wasn’t actually my concern), they’d be happy to keep Kitty for several more days to make sure that she didn’t have a negative reaction to the Wellbutrin. I repeated that I was more concerned with the fact that this was a child with mega trauma issues that “presents well,” who is barely able to stay emotionally stable (6 hospitalizations!), and they’ve reduced her meds by more than half, and then are dumping her right back into family and school. I explained a little bit about the problems we are having with the school.
I asked for them to write a note stating that Kitty needed to be homebound for awhile. They agreed to fax us an excuse for 7 to 10 days while we wait to make sure there are no negative side effects from the Wellbutrin (– school is out for the holiday, but that only gets us through next Wednesday if we’re lucky, and then we’ll be right back to being “punished” by the school). With that taken care of albeit temporarily, I told them I was taking Kitty home right then.
When Kitty had left to get her stuff and the therapist continued to express that they could keep Kitty a few more days if I was worried, because she obviously recognized that I was NOT happy. I finally told her flat out that I wanted Kitty out of there, because I felt they’d messed up her medications and I didn’t see a point in delaying getting them fixed.
When Kitty came out with her stuff, the therapist let us out of the building and the main gate and waved at us as she drove past us walking to our van. As I was sitting in the car, still fuming, I suddenly realized there was something really wrong with this discharge. It should have been more complicated than walking off campus with Kitty and her garbage bag full of stuff. While we were still sitting in I finally called the hospital and asked if it was really that simple. They asked us to come back in and fill out the discharge paperwork.
As we drove away, I realized that it wasn’t too late to call Kitty’s pdoc. The next available appointment wasn’t until the end of December, but by a weird fluke (or Godincidence as I prefer to believe) the appointment I’d cancelled for tomorrow (Wednesday) hadn’t gotten cancelled (I cancelled it because I thought she was going to still be in the hospital) or she’d had two appointments for some reason and I’d only cancelled one. So joy of joys she has an appointment tomorrow.
She was a little manic all evening, but seemed OK, especially after she’d found out she didn’t have to go back to school right away.
Wasn’t sure what to do about meds tonight. Gave her the Trileptal, and the constipation meds they hadn’t been giving her, but didn’t want to fill the prescriptions given to me by the hospital. The only Seroquel we have in the house is 300mg and she only needed 50mg so we skipped it.
Monday, November 21, 2011
First, they kept her on Tril*ptal (mild mood stabilizer with few side effects). Fine with me. She's been on this med for over 5 years, and it seems to be a good one.
Then they said they want to put her on Ser*quel XR right away, to help with sleep. This confuses me, because she's been on Ser*quel before and it caused her to gain a lot of weight (70lbs in 6 months). Plus, I'm confused about the point of a med wash where you add new meds before the other med are even out of her system... but OK.
So today they call me and say they want to start her to Wellb*trin (an anti-depressant) to replace the Depak*te (a mood stabilizer). I'm OK with getting off Depak*te, we were in the process of switching her to Lamict*l anyway, but I don't get why they're switching from a mood stabilizer to an anti-depressant. So I
I asked if they'd reviewed her records, so we weren't recreating the wheel or switching her to the new doctor's favorite med cocktail for no apparent reason (has happened before). Of course they hadn't.
Why did I bother to sign consent forms everywhere?
I declined to give permission for the switch until they reviewed her records. Which they did, and I guess I'll find out the results tomorrow at family therapy.
Finally heard back from the Advocate and Struggling to Stand was right, it doesn't matter that Kitty is not in the school district right now. The good news is I don't have to worry about what the school is going to torture her with while we wait for the due process hearing or mediation or whatever.
I did get the behavior staff notes for the last few weeks. It's hard for me to read because it's all about what I did wrong ("Mom brought her in late. Mom didn't call to say she was going to be late or wasn't coming. Mom didn't sign her in right. Mom took her home...") or only talking about things that imply Kitty's issues are minor or all at home ("Kitty was upset about something and wanted to talk - no detail on days when I'm pretty sure Kitty was upset about something that happened at school. Kitty said sometimes she tells Mom she feels like hurting herself so she can get away from the family and go to the hospital. Kitty wanted to call home, but I told her she was fine.")
Friday, November 18, 2011
Actually, my concerns were what to do in the meantime. I got a call today from the new psych hospital. They want to do an almost complete med wash. This will probably take several weeks, during which time she's disenrolled from school and enrolled in the hospital's charter school and presumably she'll still be there.
So now I'm worried about:
- the fact that this med wash could make her completely unstable and swing back to irrationally hating me for loving the other kids and hating her.
- That she may be in the middle of it if/when we finally get approval for RTC
- that I won't find an appropriate RTC.
- That we can't proceed with the mediation/due process since she's not enrolled in the school, and therefore when she's released from the hospital we'll have to start all over with her suffering from the unacceptable lack of accommodations,
- that she'll be missing her annual IEP meeting where they're presenting the results of her new FIE (school version of a psych eval)
After the most recent IEP meeting, the school has decided to punish us by not letting her call home anymore, and she isn’t allowed to leave the classroom and go to the Learning Lab if she’s feeling stressed and overwhelmed anymore (when she felt ill and went to the nurse’s office she was sent right back to class after having her temperature taken, which sounds fine, but during the last 4 IEP meetings it was agreed that Kitty goes to the nurse when she's feeling stressed and overwhelmed and needs extra support). They did let her go to the Learning Lab for additional instruction, but only if she had makeup work (she failed 2 tests this week).
Because of this she couldn’t handle going to school Wednesday morning (she LOVES school so this is a dramatic change for her), so we took her to the crisis center for an assessment, and they recommended hospitalization. The big problem is that I don’t think we can do anything to get the school to change this new approach and I don’t know what’s going to happen when she goes back to school (probably after Thanksgiving).
Yesterday we spoke to Kitty’s new Assistant Principal, and I think we're finding that a big reason the school is fighting us so hard about letting Kitty go to the Special School is because she's so good at wearing her mask. All the teachers not only believe the few times they see her giddy (manic and overstimulated) that she is actually happy, but also it's that she's a positive influence on the rest of the class and they want to keep her. She's quiet, likes school, gets her work done, understands the lesson, and is a good buffer between some of the more rambunctious students. I think the teachers are tired of having all their kids being tough, and Kitty doesn't let them see the effects of the stress on her. The Behavior Program staff probably are receiving a lot of pressure to minimize the behaviors they see (A "6" on a scale of 1 to 10 being labeled as "mild anxiety"!) No one seems to care that Kitty is being torn apart.
We’re still not receiving the Behavior 360 reports. I've asked our professional advocate what should we do? Should we start moving up the line to higher ups in the school district? Should I ask for yet another IEP meeting or Parent/Teacher conference? Should I write a letter demanding they go back to acknowledging she needs to leave the classroom if she’s stressed (like all our documentation states)? She has to go back to school (probably after Thanksgiving) and her next IEP meeting (her annual) isn’t until December 6th.
Wednesday, November 16, 2011
Kitty requested to call home, but was told no. After walking around with the behavior staff for awhile, Kitty again requested to call home, but was told that The Crisis Plan said she couldn’t call home. This is new so she was confused (as was I, since this wasn't how I interpreted the results of the last IEP meeting).
One change that was added to the Crisis Plan was that if she left the classroom she was supposed to be able to go to another location and continue to receive her lessons taught by a special education teacher. She was offered the opportunity to work on math in the Learning Lab, but since it was a new concept and she didn’t have any paperwork to work on, she felt that the person in the Learning Lab wouldn’t be able to help her. So she said no thanks. The staff sent her back to class, even though she wanted to call me and to go home.
When she got home, very upset, I told her that next time she needed to tell the behavior staff that she wanted to learn in the learning lab if she left class (even if it was a new concept), and that it was OK to leave class for something besides having make up work. She can leave if she's feeling stressed and overwhelmed. I told her that the staff wasn't allowed to ask her if she felt like hurting herself, so if she did feel that way she really needed to tell them. Then I assured her that I'd talk to the school the next day and find out what was going on with not being allowed to call me.
I sent an e-mail requesting a copy of the new Crisis Plan and asking why things were being handled this way. I got no response, and Tuesday was worse. She was not allowed to leave when she was stressed, and was still not allowed to call me. She did leave class twice to do some make-up work in the Learning Lab later in the day.
When I picked her up after school, we went straight to her regular therapy appointment. She started off OK, but shut down almost instantly (spent most of the session with a blanket over her head, refusing to come out. Got her home and somehow managed to avoid a major meltdown at home.
Today she couldn't even handle the thought of going to school. On the way in I called to see if I could get an appointment with the new AP (couldn't), and by the time I hung up, she was begging to go to the crisis center. We went and she needs to go back to the psych hospital. We're trying a different one this time.
Also stopped by The Settlement Home to check it out, and it seems great... but they don't have any beds and probably won't until January. So still looking.
Tuesday, November 15, 2011
BUT San Marcos Treatment Center (which was the place we'd chosen) is no longer a provider for Nebraska Medicaid so we have to find another residential treatment center (RTC),
AND they have to specialize in trauma therapy.
So far these were our next best choices:
The Center for Success and Independence
The Settlement Home
Anyone know anything about them or a better alternative in Texas?
Monday, November 14, 2011
Anyone read the book "Night" (I think it's about the Holocaust) or "Of Mice and Men" recently? I've never even heard of "Night" and it's been forever since I read "Of Mice and Men." Please ask around!
I need to know by tomorrow if they're appropriate for Kitty, my suicidal/ emotionally disturbed teenage daughter, to read in Language Arts. Some of her triggers: suicide/ self-harming, feeling someone "deserves to die" because of something awful they did (guilt/ shame), domestic violence, blood and gore, hurting women or children, foster care, physical/ verbal/ sexual abuse, abandonment/ loss...
Probably the most significant test results came from the WISC, which were confirmed throughout the testing. Kitty’s Perceptual Reasoning (non-verbal) and Reasoning (verbal) were average and almost average (PR- 90 and R- 87). I believe this is consistent with what we’ve seen from Kitty academically and in discussing things with her. Given time she is capable of “getting it.” The time is the key word there though. Kitty’s WORKING MEMORY was low borderline (WM- 71), but even that she could overcome. What causes the issues for Kitty is the PROCESSING SPEED (PS- 65), which is in the mentally retarded range, and appears to be where many of her issues are coming from.
WHAT THIS MEANS: Kitty will have great difficulty with immediate recall. When GIVEN TIME she can usually figure out a problem. Doing math “in her head” would be a LOT more challenging for Kitty than other children. Things like remembering phone numbers is difficult. She has great difficulty with organization and needs things BROKEN DOWN INTO LESS OVERWHELMING STEPS that are given to her in small CHUNKS. TIME CONSTRAINTS MAKE TASKS TOO CHALLENGING. She needs smaller amounts of work, because it takes her longer. Things like Modified TAKS and administering tests in a one on one situation (so she has more time and doesn’t have the pressure of seeing other’s finish before she does).
ATTENTION – Visual Kitty’s attention meds appear to be working well. Her errors in the visual area were mostly impulsive errors and seemed to be more processing issues than an attention issue.
ATTENTION- Auditory This was the area Kitty had significant trouble in. Under quiet, structured conditions she did well, BUT… when distractions and noise were added her processing issues becaume extreme.
WHAT THIS MEANS: Kitty needs a SMALL, QUIET, structured environment, with frequent, regular eye contact from the instructor, with lots of one on one “checking in” to help her stay focused, on task and “getting it.”
EXECUTIVE FUNCTIONING SKILLS: Kitty had ELEVATED DIFFICULTY. This is things like impulsivity, transitions, organization, planning, self-monitoring, changing plans and how to approach things (ex. she needs someone else to redirect her if it’s not working or to help her think of different approaches if her chosen method of execution isn’t working).
COGNITIVE FLEXIBILITY: Low Average. She has difficulty shifting gears and looking at things in a different way.
WHAT THIS MEANS: Kitty needs lots of assistance with getting organized and planning, making transitions, redirecting her as needed and helping her improve her self-monitoring.
MEMORY: Kitty LEARNS BEST: AUDITORY
Hearing: Short Term: 97(average) Long-term: 102 (average)
Visual: Short Term: 76 (below average) Long-term: 75 (below average)
WHAT THIS MEANS: Reading books and reviewing notes is tough for her. She’s not going to learn well this way. She needs AUDIO RECORDINGS of lectures and books.
LANGUAGE: The Neuropsychologist believes that Kitty’s lower scores on this were more due to her processing issues because the test was timed than language issues.
WHAT THIS MEANS: Kitty need work broken down into chunks, small tasks given to her slowly, instead of overwhelming lists.
EMOTIONS: Kitty self-reported almost no problems in anything but somatic issues and slight depression. Mom reported her as having great difficulty in many other areas.
When Kitty was tested with more open ended tests (like telling stories about pictures, finishing sentences), her results were full of LOSS (leaving, dying, abandonment), contributing to feelings of sadness and anxiety. Even neutral prompts became about family/ attachment issues.
School/ Social – Kitty feels safe and secure at school. One reason she appears to be afraid of the Special School is because she is afraid it she will not be safe. During the feedback discussion with the neuropsychologist and Mom, Kitty understood that because of her issues with processing and noise that the Special School might be helpful in achieving her goal of getting through school without going back to the hospital and going to college. While all agreed that a school with a therapeutic component would be the most beneficial, until that becomes an option, she was willing to try the Special School to see if she could feel safe there. All agreed that adding a school counselor to Kitty’s therapeutic team was not in her best interest at this time.
WHAT THIS MEANS: Kitty is having a very hard time handling and coping with the feelings that she does express in this test. She appears to be have issues with recognition/ awareness of her emotions. School needs to have a THERAPEUTIC COMPONENT. She needs to have a QUIET, place to go when she is upset. Classrooms need to be small and quiet.
Thursday, November 10, 2011
The professional advocate was there, and she'd assured me the school had made so many mistakes we were golden. She was wrong.
- The Assistant Principal, Mr. AP, (the one who made the comment at a previous ARD about Kitty being just as likely to commit suicide as being hit by lightening inside the school), made another non-PC comment that had our normally cool advocate almost yelling at him. At the beginning of the meeting he decided to cut to the chase and told us that they'd had a staffing and Kitty was not going to be allowed to go to the special school, and if we didn't like it we could go through due process (or something like that. Honestly I don't know why is was so upsetting to the Advocate, except he's not allowed to tell us to go through due process.). The Advocate almost walked out, but we figured we had to at least listen to what they were proposing since we're apparently stuck with it for now.
- Kitty excused herself after about 15 minutes of the meeting because the arguing was stressing her out.
- Despite all evidence, the school is maintaining that there is no proof Kitty's problems are related to what happens at school. One of their arguments was that Kitty tended to go to the hospital on weekends.
- Another argument was that Kitty doesn't want to go to the special school.
- They completely discounted the fact that Kitty's grades have dropped from As and Bs to Cs (after all she's still passing), and that she's missed almost 38% of the school days since school started (and that's not counting testing, IEP meetings, and other stuff that takes her out of class).
- Censor the books and movies she watches.
- Anytime she gets overwhelmed she'll go to the Crisis Counselor (I'm still trying to decide if we're going to allow this. Kitty has 2 experienced therapists already).
- Instead of going back to class, she'll move to an "alternate location" where a special education teacher/ aide will "continue her instruction."
This will last for 14 school days, then we'll "reassess." If she misses more school between now and her Annual IEP meeting then this "trial period" will have to continue after the meeting, and the information can't be used for placement decisions.
We're waiting to hear from TEA mediation. Next step is due process.
In the meantime we're still on hold for RTC and everything, and it's making Kitty nuts.
She still hates the idea of the special school (had convinced her to "try it," but she changed her mind again), and she's mad at me for wanting her to go. She had a small meltdown on the way home, but we got her mostly calmed down again (she decided to ignore it).
Saturday, November 5, 2011
I admit I'm in a bad place right now, and "broken" was probably too harsh a word to describe my kids, but they are definitely seriously, permanently "damaged." I don't know if acknowledging this harsh reality is "cursing" them, but if it makes any difference I would never say anything to this effect in front of the children and I rarely say it at all. I consider this a "safe place" to vent.
I/we have struggled for every tiny bit of progress and now that they're so close to the point of launching into adulthood I sometimes despair that they've made enough progress to be able to successfully navigate this transition (it's hard for everyone, but especially for kids who have so many strikes against them).
You hear inspiring stories every day of people who overcome major tragedies and issues to do great things, and I seriously pray for this for my children, but I'm also aware that my kids have SO many serious issues that overcoming them is not very realistic.
As for the kids' biomom, I take great pains to NEVER criticise her in front of the kids, but I do have to try to explain and help the kids understand her actions WITHOUT feeling they are to blame (biomom made it very clear to the kids when she dumped them in foster care at age 9 and 10 that it was THEIR fault they were going into foster care). I do not respect biomom, but I AM sympathetic to the difficulties and issues she had to fight. They were similar to those with which my kids also had to deal.
Bear and Kitty came to live with us 2 years after they entered foster care and had had some of the "rough edges" smoothed off, plus we had a lot of resources... but they were still almost impossible to handle. I can't imagine being a single parent of 4, dealing with the domestic violence, her own mental illness, and possible drug and alcohol issues... and dealing with mentally ill, defiant, suicidal, traumatized children. I know the police and CPS were in and out of her home too. She has my empathy.
On another note, Kitty is back in the psych hospital again... for the 5th time this year. She wasn't even out of the hospital for a month.
She was already having issues, but called BioGrandma today and found out her sisters had been visiting. The biograndma was talking about how sweet Kitty's 3 year old little sister was, and how she'd told her Grandma that she loved her. Kitty was sad that she's never met this little girl, and wished that she was the one getting the love, but mostly she was upset because she couldn't be there to protect her sisters.
Recently Bob has begun texting a boy she knows from church, who is also a friend of Bear, and who graduated early this year - so is 17 and in junior college. *EEK!* Today she invited him over to watch a movie with the family (15 is too young to be dating without line of sight adult supervision). Unfortunately, Kitty's meltdown happened right in front of him. Luckily we were able to get her moved to another room, but it was still hard for everyone to cope.
After quite a long conversation, the crisis counselor we called (who arrived minutes after the boy had left), seemed about ready to leave. Kitty was calm, and not actively suicidal or homicidal anymore. When she asked Kitty if she could contract to not hurt herself, Kitty didn't think she could make that committment, and Kitty asked to go to the hospital.
Whenever Kitty goes to the hospital she is automatically disenrolled from her regular school district to the school district in which the hospital is located. Her school still has to provide schoolwork, and tend to ignore this technicallity, but it's still a reality.
Big problem: Kitty has an IEP meeting on Thursday. The big one for which we've hired an advocate. This will only be day 5 (possibly 6 depending on how you count it) since her admission to the psych hospital. She may not be out of the hospital yet (although she almost certainly will be by Friday). We may have to delay the IEP Meeting. *AARRGGH!* Will be talking to the advocate in the morning.
Friday morning she gets the results of her neuropsych. She's supposed to be there for that because I wanted the neuropsych to get to give Kitty the information so she can't blame me. (Yes, I acknowledge that she will anyway, but a girl can dream right?!)
And then there are people like Hubby and I. Who are trying to make ends meet and supporting 2 special needs teenagers to adulthood so they will hopefully not perpetuate this cycle. We need these monies too. When Hubby was unemployed (but looking for a job), we had our kids on the free lunch program (we had a nice house and nice cars, but you can’t eat those). We get money from the state every month (adoption subsidies). My kids are on Medicaid, because their medications alone cost $2000/mo… each. They see therapists, psychiatrists, specialists… sometimes multiple times a week.
Granted it was probably their “welfare mom” who’s been “in school” for the 5 years I’ve known her, who has 5 kids with 5 different fathers, who probably drank and did drugs while pregnant and raising them, who “aged out” of the foster care system, who is mentally ill and abused herself… who caused them to be like this… but is that their fault?! Should they be punished?
They are mentally ill, have low IQs, are traumatized to the point of being unable to function in real life… and will probably never be able to be functioning, productive members of society. Through no fault of their own – and despite the fact that we worked as hard as we possibly could to help them, “fix” them, heal them. They are “broken” and this was “set” long before they came to us.
I agree the woman in this video is horrid. It’s true that some people take advantage of the system and share how with their friends. It’s also true that some “rich” people cheat on their taxes and share loopholes with their friends. Who is bilking the system for more?
Edited to add: I have NO evidence that my kids' biomom was ever on welfare, or drank or did drugs while pregnant. I was merely using this as a way of personalizing an example of why condemning all people on welfare/Medicaid is punishing people we know and love, not some random stranger on a video.
Tuesday, she got anxious when they started the new behavior charting… or something. She couldn’t say why she was anxious exactly, but she thought it might be the question of how anxious she was feeling being asked by the behavior program staff. Left class at 1:30 and called home. We talked her into going back to class, but at 2:30pm she felt even more anxious, and the nurse let her call me and said she could go home.
Wednesday, she made it through school just fine so I decided to let her ride the bus to school the next day for the first time since she was hospitalized in September. She has been for the most part more emotionally stable since that last increase in Depak*te.
Thursday, she saw that stupid movie in 1st period Teen Leadership class. I’m watching it now. It’s pretty awful from the point of view of a kid who feels guilty/ responsible/ suicidal…. I can’t imagine why they showed it even to “mentally healthy” kids (it practically advocates suicide as a solution). When she called me, I asked her if she felt like hurting herself, she said “sort of.” Later she talked about having spent all morning resisting the urge to self harm. In the car on the way to speak to someone at the MHMR (I thought it was an assessment person, but there was a miscommunication), she talked about her new fear of being in a car accident. We’d been talking to all of the kids about the responsibilities associated with driving (and that it was one reason why we were doing neuropsych testing). I tried to reassure her that car accidents can sometimes be just fender benders, and it’s normal to be nervous about this (I mentioned my similar fear in my teens). I didn’t know what to say.
Today, she called me at 11am because she felt anxious again. She told me on the way to the crisis assessment, that she is nervous about going to residential treatment.
I don’t want you to think we’ve been talking up residential. We didn’t talk about it at all when she was released from the hospital. Eventually we mentioned it briefly as an option to help give her a safe place to deal with her trauma issues. Now that it’s possible that it could happen any day, I felt we needed to discuss it. For one thing she has to get some shopping done (they require 8 pairs of jeans and bras without underwires – which she doesn’t own).
I feel like it’s a horrible Catch 22. I want to just deny it until we know exactly when it’s happening, and then not tell her until right before it happens so she doesn’t go through this anxiety of waiting. On the other hand, I want to talk to her about it. Explain why we think it will help, what she needs to work on while she’s there, let her know it’s OK to be scared and give her as much reassurance as possible that this is not an abandonment or punishment. It really could happen as early as Tuesday depending on how the review of her clinicals goes in Nebraska. They have an open bed at the treatment center we’ve chosen.
In Trauma therapy today, we talked about a minor meltdown Kitty had while trying on jeans at a thrift store. She didn’t like the jeans I’d found on the sale rack, and she didn’t want to try jeans on at all. She found one pair (not on the sale rack) and was done. When I pushed her to try on more (she NEEDS more jeans, and they wouldn’t let me use my credit card for less than $10 and I don’t carry cash), she started crying, got overwhelmed and let out a cuss word that could be heard by me on the other side of the store. When I said, “Language.” She said she didn’t care, and got belligerent. I helped her hang up the jeans and we walked out of the store without buying anything.
So in therapy, the therapist asked me what would have happened if I had just walked out of the store when Kitty had started acting up. I said I wouldn’t do that because I know it would trigger Kitty’s abandonment issues, but just our conversation did that! She started talking about how she’d call the police and get me on child abuse charges and would run away. It was very frustrating for me because she was just as upset and angry at me as if I’d actually done it! I reassured her that I wouldn’t do that, and reminded her that I hadn’t, but it took quite awhile to get her calmed down again.
It’s days like today that I really get why she’s going to residential treatment. I just hope it helps and doesn’t make things worse.
Friday, November 4, 2011
Kitty said yesterday she thought about hanging herself, but didn't get a rope. Today she thought about doing some self harming with a lapel pin, but resisted. She'd eaten her lunch by 10am (yes, she'd had breakfast about an hour earlier). The crisis counselor sent her home with an admonition to keep an eye on her (which of course we already do).
We're still waiting to hear from Nebraska what the funding decision will be. They are meeting with someone today to assess her clinical to see if they agree she needs residential, and have asked us to document all the steps we've already tried (mentioned partial day hospitalization - which of course we can't try since Medicaid doesn't pay for it).
The Medicaid case manager did finally come up with a viable solution for getting documentation that TX Medicaid won't pay for residential treatment or partial day hospitalization. She suggested we get Kitty's psychiatrist to prescribe them, and then when Medicaid denies the request we will have our documentation! Brilliant right? Now all I have to do is get the psychiatrist to contact me. Of course she only works on Wednesdays and Thursdays (and I met with the case manager Thursday after 5pm). *sigh*
Thursday, November 3, 2011
I talked to the behavior program staff she was with, and he felt he could talk her into going back to class. At 2:30pm I got another call, this time from the nurse’s office. Kitty was feeling even more anxious and wanted to go home. The nurse felt it would be a good idea for her to go home. Kitty was quiet on the way home, and went straight outside to walk/stalk the backyard talking to herself for hours (she does this almost every day for 20 minutes to 2 hours, depending on how upset she feels).
Today, in first period they played the movie, 7 Pounds (a Will Smith movie in which he feels guilty about causing his fiance’s death so he commits suicide), and Kitty was very shaken by it as it felt a little too close to home, and triggered quite a bit of trauma for her. She managed to make it through the next period and lunch, but requested the behavior program staff during math class. They spoke to her for awhile, but she called me from the nurse’s office soon after this.
When I asked her if she felt like hurting herself she said, “Sort of.” So I took her to the MHMR Crisis for an assessment (to document this absence for school since we are being super careful to avoid potential truancy issues and don't want them to change their mind and say I was overreacting). On the way there, she was very tense and spoke about a newly developed fear of being seriously injured in a car accident.
She started pouring out her trauma history to the crisis staff person she’d practically just met. He seemed a little overwhelmed. After we left, Kitty went home to stalk the backyard, and recover.
I miss me.
My husband and biokids miss me. I'm so overwhelmed dealing with mentally ill, RAD teens that I don't sleep. I've gained 80 lbs. I can't work (no time what with appointments, paperwork and dealing with the kids...). I've been off and on meds (I hadn't needed since college) and therapy for my bipolar and now PTSD. I don't laugh. I don't sing around the house anymore. I don't have hobbies. I only talk to the few friends I have left and my family about the kids - our struggles with the legal system for Bear, getting residential treatment paid for, and trying to get the school to provide services for the kids...
I thought I knew what I was getting us into when we adopted special needs teens (After all, I used to be a social worker). I was wrong. For a long time I wanted to adopt again because I thought that now that we were experienced therapeutic parents (earned through painful, extensive effort), that we had a lot to offer. I have nothing left to give.
I thought we'd made a huge difference in the life of our 2 adopted children. Now I believe that the minute Bear (18) leaves our structured (feels like a prison) home, he will stop taking his meds that are the only reason he's not psychotic, and all the trauma and issues he never dealt with will come right back to the surface. He'll end up dead or in prison. I feel like we've just delayed the inevitable.
I thought that we'd made huge progress with Kitty (16), because it felt like her RAD was healing, and she has been stable for almost 2 years, but she just had her fourth hospitalization this year and the doctors say her meds are right, and the problems have to be because of the trauma. They recommend long-term residential treatment, but we can only possibly find funding for 90 days (if I can get funding at all). They've both been in residential treatment before and it didn't do any good.
I'm just so tired.
Tuesday, November 1, 2011
In the off campus and school setting Kitty has expressed suicidal ideation, including threatening to harm herself. According to Mrs. Themom, Kitty has expressed a fear that she may harm herself. Kitty exhibits somatic complaints, asking to go to the nurse frequently and then home.
*******If Kitty asks to go to the nurse, call parents or requests the Behavior Program support:
-Call the Behavior Program x#### or x#### to discuss request with Kitty and if necessary, ESCORT to nurse.
-The nurse will assess validity of complaint, check her vitals and if there is no evidence that she is sick, Focus escorts Kitty back to class.
(If Kitty has no fever, vomiting, or outward signs of illness, she is to return to class after emotional status discussed - see below.)
In order to assess Kitty's current emotional status the Behavior Program will utilize feeling scales and signs of "acting in" behaviors (see attached) and personal observations to discuss with Kitty her levels of anxiety. Parents will be given feedback through the Review 360 behavior data collection/progress monitoring program.
********When/If anyone witnesses evidence of SUICIDAL IDEATION including threatening to harm herself in either oral or written form, call the Behavior Program immediately; the following procedures must then be followed immediately for the Suicidal Ideation:
-Call the Behavior Program x#### or x#### . The Behavior Program then calls the following:
-Nurse x#### to assess medical needs;
-Crisis Counselor, Ms. S, general education counselor, Ms. V, x#### to assess emotional needs or any counselor;
-Asst. Principal, Mr. R x#### or any other A.P. available, Mrs. S x####, Mrs. S x####, or Mr. S x####
-Parents, Mr. &/or Mrs. Themom. Please call in this order: I) ###-#### Mrs. Themom; 2) ###-#### Mr. Themom; 3) ###-#### Mr. and Mrs. Themom
-Parents are summoned to campus as needed to take Kitty home or to the doctor, if necessary.
The good news is that while they wouldn't acknowledge my letter or list of interventions, they did copy the "Acting In" behaviors straight from my letter and put it in the Crisis Plan so at least we have it in somewhere. Now I wish I'd had more time to write it, but I think I covered the basics. Someone sat down and typed it in (so I don't claim the typos!) during the IEP Meeting.
Examples of "Acting In" Behaviors as reported by parents:
- Manic/Hyper: agitated, overly-sensitive; loud, pressured speech, over-zealous in relationships, loud, barking laughter, "vibrating" leg(s); popping knuckles (only does this when under stress); impulsive; difficulty concentrating
- Self-harming: gouging skin with finger nails; stabbing with pencil, burning skin with
eraser. ..technically this is an "acting out" behavior, but Kitty has been known to do it secretly in public and often expresses concerns that she might self-harm and asks for supervision to prevent it.
- Depressed: Statements she wishes to die, statements or acting as though she wishes to "give up;" statements that others "hate her;" belief/ statements that she is
- Escape/Dissociate: physically leaving room or "checking out;" unfocused; changing subject (often apparently at random); distracting (asks question or makes comment that changes the subject); napping/head down; appearance of being exhausted; "shutting down"
- Somatic Issues: aches; pains; exhaustion; hunger. Has difficulty identifying correct emotional and physical feelings so is prone to emotional eating and ascribing real or perceived aches and pains to incorrect sources. Ex. If Kitty is feelings depressed or suicidal (possibly because she forgot to take her meds, skipped a meal, hormones chemical imbalance, was triggered by a traumaversary or event ...), she might blame this on a recent event (such as a fight with her sister) that may or may not actually be related.
- Depressed: Sad; crying whining; begging to go home
- Overwhelmed: low frustration tolerance; disorganized, needs to "chunk" assignments (break down into smaller more manageable pieces); forgets assignments or needed materials; hurries through assignments, requires frequent breaks to relax and regroup; frequent requests to leave the room; needs frequent redirection and individual attention; difficulty remaining focused and on task - needs frequent assistance/reminders.
- Anxious: hyper-vigilance; worry; hurries through assignments; obsessed with following the rules
- Poor Boundaries: inappropriate interpersonal interactions. Inappropriate share/ venting with peers and others, particularly about abuse and perceived abuse (past and present); participating in or allowing physical and/or emotional teasing/bullying; inability to recognize other's "boundaries" and bothering them; perceives others as threatening or abusive; tattling about rule breaking; verbal lashing out; gossip- (has spread vicious rumors regarding sibling/friends and accused them of doing the same); threatens 09r hits peers (yes, this is and "acting out" behavior, but is on that Kitty as acted on in school and the community).
I requested that they redo the FBA (Functional Behavioral Assessment - originally completed on "Meltdown Behaviors.") to address "Acting In" behavior, but was told by Ms. BS that it was "illegal for her to assess behaviors she can't directly observe." She did say that some of the 'acting in" behaviors had been observed by her so she would do... something. She didn't really say what.
At the end of the time allotted for our IEP Meeting, I asked them to add my 2 documents as an addendum to the IEP, but since we "didn't discuss them" (not for lack of trying), this was denied.
So we refused to sign the IEP. We have another IEP meeting in 9 days.
This time we will be bringing a professional advocate. We found one that is offering us some pro bono work, and we'll find the cash somehow. (Stupid car decided to start breaking down).
Since we didn't sign, supposedly the altered Crisis Plan will not be put into effect, but obviously it already has. Kitty called me today at 1:30pm from school too anxious to go back to class. I talked to her briefly, but she could not verbalize what was wrong. I talked to the behavior program staff, and he thought he could get her back to class. At 2:30pm I got another call. This time she was calling from the school nurse's office and the nurse said the school was OK with her going home.
I'd just been thinking she was responding positively to this latest bump in Dep*kote and we'd have trouble convincing anyone she still needed residential treatment. She was alert and participating in the IEP meeting, even though she'd just had an overnight sleep study, so I was convinced we were going to lose all ground on the school front too. Guess she took care of that.