BPDFamily.com

Hello everyone,

I have been meaning to get on here and update everyone on the progress regarding my daughter's therapeutic foster home placement however, unexpected circumstances, and many of them became my priority.

Well, the last time I posted we were waiting on the approval for my daughter to be placed in a therapeutic foster home.  We met the foster Mom and both my daughter and I felt this was going to be a great match and provide us with an opportunity for us to work together to get her back on track, AND for our family to receive a bit of respite which was needed in the worst of ways.

My daughter, unexpectantly attacked my fiance and daughter on two occasions (which prompted us to seek out therapeutic foster care placement).  Both physical attacks were unprovoked.  We had been noticing my daughter become increasingly paranoid saying that "say and so" keeps looking at her, or would accuse us of saying things that we did not say which would start arguments that quickly escalated into potentially dangerous situations since we realized that we were not dealing with an individual that was living in reality, but in her own world.

On the 14th of December, I received a call from the Vice Principal of her high school asking me to come immediately to the school.  There had been a very serious fight involving my daughter and I needed to get there ASAP.  When I got there I was met by two administrators and a law enforcement officer who walked me into a room where my daughter was sitting behind a desk.  The VP asked her to tell me the details of what had happened.  My daughter minimized the incident sating that she was trying to fix a problem that she and another girl were having when the girl's friend stepped up to my daughter getting into her face saying "what difference does it make"... .    and that this girl punched her so she punched back resulting in a very serious fist fight.

The administrator's version was completely different.  He stated that my daughter had been saying earlier in the day that this girl was starring at her and obviously had a problem with her.  When my daughter spoke about it with her friends at lunch, they were all confused because the girl never looked over at my daughter until the girl's friends noticed MY daughter starring in a very hateful manner.  My daughter's friends tried to talk her out of confronting the girl because they had not seen any reason to start a problem when there was none to begin with.  They thought she was acting strange, and one of her friends even got up and walked away out of frustration after attempting to understand why my daughter felt there was a problem.

Apparently my daughter confronted the girl in the very beginning of their English class.  My daughter asked the girl if there was a problem and the girl replied "Not at all".  Because of my daughter's behavior during lunch, one of the girl's friends interjected by saying "What does it matter if she did have a problem?"  My daughter told her to get out of her face and pushed her.  The girl swung and punched my daughter and then my daughter started pounding her where they fell to the ground.  My daughter got up and started stomping on her face with the heel of her shoe threatening to kill her.  The TA in the classroom had tried to pull my daughter off but was unsuccessful.  The teacher called the office for assistance where the male administrators and the campus police officer came to stop the fight.  After many attempts to pull my daughter off of the girl the officer put my daughter on a 3 second notice that if she did not comply that she would be tazed.  It took 5 trained adults to pull her off of the girl.  She attempted to twist the girl's neck with intention to kill her.  The VP gave my daughter many opportunities to explain that she was angry and said that she was going to "kill" the girl but really did not intend to, but instead my daughter repeatedly explained that she wrapped her hands in the girls hair to get a good grip in order to twist and break her neck.  My daughter had a very hard time not understanding why no one understood and agreed with her reasoning.  She kept saying that the other girl swung first therefore she had no choice but to defend herself.  Totally NOT what happened.

The principal suspended her long term with a strong recommendation for suspension for the remainder of the school year.  Thank God she has an IEP.  We had the MDR meeting where it was determined (unanimously) that the behavior causing her suspension was a direct result of her dx and that she would be able to return to school however, she would be restricted to the special education trailer and would have to be escorted anytime she left the trailer including lunch.  My daughter would also have to transfer, upon the completion of a transfer request by the school admin., to an alternative school.  She would be able to return to a traditional high school after consistent positive improvement is observed for an undetermined period of time with no disciplinary referrals. 

My daughter basically threatened to kill herself if she could not return to school and that she would rather be dead than have to go to an alternative school.  When her therapists and I explained that she chose to act out in this way and that she knew from the behavior contract we had in place, that if she was to assault anyone for any reason that she was going to have severe consequences and this was only one part of it.  There was still a possibility that the therapeutic foster mother would take her, even after all of this.

Sadly, one week later, she attacked her younger sister after perceiving that her sister pushed her out of the way while turning on the stove.  That is not what happened.  I saw it all unfold from start to finish.  I was grateful that I was home and in close proximity to the fight because if I had not been able to get in between them, I seriously think my younger daughter might have not been as fortunate as the girl at school who only had major bumps, bruises and cuts.  I truly feel that my daughter has the potential to kill someone and not have an ounce of remorse.

I took her to the crisis center after talking her into allowing me to take her without calling the police.  I did not want to call the police because last time I did, she tried to get them to shoot her by holding a knife to her throat and making unpredictable movements.  My entire family was here to witness that, including my 6 year old son.  When my daughter attacked my fiance, my son was also there to witness everything.  He froze on the landing of the stairs and urinated on himself because he was so scared.

The one thing that my daughter is now saying is that she is seeing a shadow that resembles a man in a hood and is hearing whispers.  I don't know what to believe because she has heard other kids while she was being treated in a prtf say these things and get out of being in trouble.  The only difference is that they actually had audiological and visual hallucinations where as my daughter has every reason to want to say anything to get her out of trouble without having to be held accountable for her actions.

I hate to say that I don't believe her, but I don't.  She is in a level 5 state run psychiatric facility.  All other long term facility's, including the one she was discharged from in Sept refused her admittance based on her severe level of aggression.

This is just a small piece of what has occurred over the last month.  I am and have been struggling with how to handle all of it.  I know she can not come home any time soon, and I feel good about that.  My heart is broken and I am going through my own depression.  I know that there are very few options for her, but I have such an emergent need for her to get the RIGHT therapy, and the RIGHT dx, and be in the RIGHT prft, so that I know she has a shot at living a somewhat normal life. 

The facility where she is at right now actually has DBT which she is receiving twice a week.  There is only one other facility in NC that provides it in Ashville which is on the other side of the state, but at least there is ONE place that has what she needs. 

I am going to looking into requesting that the state fund an alternative academic setting that includes an intense therapeutic element, otherwise we might as well give up since the only other available options are therapies we have already committed years to hoping for some relief for her, but really all that has happened through all these years of running around getting her help is the acknowledgment that she has learned to bs the system, and has been highly successful at pulling the wool over the eyes of most of the proffessionals that have committed years of hard work thinking that she was actually benefiting from their efforts.


Sorry this is so long.  A lot of info to share and a lot of emotions to go with all of it.

Ugh.

Googie

Dear Googie,

I am so sorry for all that is happening for you. I have no words, no advice, nothing except my solidarity and all my thoughts to you.

I so much hope that the situation is going to get better and that your daughter is going to get the right therapy.

I am with you and all your family in thoughts,

 Survive

Was she diagnosed with BPD? This sounds like schizoprehenia.

Dearest Googie,

My heart is aching and mind is a whirling in circles after reading your post.  Honestly, just yesterday I was cleaning out my PM box and in it... .  through many cleanouts is still a message from you... .  that I have saved for months... .  a reminder of you and your daughter's great need for help.  I have waited for an update on the foster care placement and have been praying that this mom that was willing to take your d into her life would be the answer for everyone.

I encouraged you to look into residential treatment for your daughter and I hope that you can get that for her.  She is a threat to self and others.  Your d reminds me so much of mine just 2 years ago.  The inability to understand how her emotional reasoning is inherently flawed, the psychosis (I doubted it too when my then BPD13 first told me) and the propensity for violence. 

Is your d on any antipsychotics?  abilify?  If so... .  an increase may be warranted.  The source of this may be manipulation or psychotic depression or the beginnings of something else... .  these dx are difficult to make.

Does your d carry the dx of Conduct Disorder?  After these acts of violence that dx may be warranted.  If it is possible to keep that dx at bay officially it will keep the doors open wider for treatment options now and in the future as many facilities will not accept a child with this diagnoses.

You are wise to push for the strong therapy component to her education... .  through the IEP you can get funding for RTC.  I would also encourage you to be open minded when looking for an RTC... .  not putting all of your eggs in the same therapy basket.  Choosing a facility (not because of where it is located) that has all the right components, atmosphere, structure, parental involvement, mature staff, and security level is up to you... .  this is the time your d needs you to be strong, resolved, clear minded and unrelenting.  You very well may have to fight the system to make this happen.  Getting an Independant Educational Consultant may help you... .  that is what they do... .  they vet the programs, they work with you, they represent your d and her needs in the IEP meetings.

This is all so sad and daunting. :'(     We are here for you to support you in all ways possible Googie. 



lbj

Justadude (love the name)-  My daughter has an Axis I dx of bipolar that they are re-evaluating while she is in the hospital.  The psychiatrist mentioned that she has traits of Major Depressive Disorder which has the potential to cause mild hallucinations, both auditory and visual.  he explained that it is caused by intense anxiety and the inability (or lack of willingness) to use coping skills.  There are a few other dx that were mentioned however, she does exhibit bipolar II tendencies which is her current Axis I dx and BPD falls under Axis II which thankfully they have added to her dx profile.  I asked about schizophrenia and the psychiatrist explained to me that a schizophrenic will understand and converse with the voices that they hear, my daughter hears whispers that she can not understand, which was explained to me to be common during extreme anxiety/panic episodes.  

lbj-  I have been talking about your daughter's experience at the residential treatment center and that she has had and continues to have tremendous success after completing that program.  I am going to contact them today and request info to be sent to the social worker at the hospital.  I am also going to contact my daughter's prior psychiatrist/psychologist's office because they have this guy that has his J.D. and specializes in education law in addition to having his Master's Degree in Psychology specializing in adolescent issues.  He is an advocate for kids that are in situations similar to my daughter's and he lives to fight the system to get what these kids are entitled to receive if they meet the criteria for out of county/state residential therapeutic facilitys.  I know he charges by the hour however, I am going to ask for him to suggest starting points on the internet so that I can become familiar with the procedure.  I have already been told that it is next to impossible to get the state to fund a long term program but that is more like an invitation for me to show them how it's done.  I went up against the IRS without legal representation and won so this will be very similar being that there are set guidelines and federal mandates for both parties to show cause to fund or not to fund.  It's the tedious methodical process that I will not have the upper hand which they know backwards and forward.  If I miss one deadline or file incomplete paperwork, the entire process can be terminated.  Knowledge is power and if we are going to get her the right therapy and therapeutic environment, then I better start taking really good notes.

It's funny that you mention manipulation because I have that feeling in the pit of my stomach that is telling me that she is just repeating things that she has heard from other kids while at prior treatment facilitys.  But we always have to error on the side of caution and act as if it is factual.  Who knows, it could be because when she was 3 and 4, she would react as if she was communicating with someone.  It was really creepy and most of my friends and family have witnessed her doing it, then it just went away.  She has had moments where it looks as if she is trying to listen or is being distracted by something but she'll deny anything is going on when it is happening, but it's basically the same reaction.  It sucks that now she is 15 and has been socialized to hide symptoms such as hearing and seeing things because she fears being ridiculed by her peers, but it would be awesome if she could find the courage to be brutally honest about what is really going on with her so we can get accurate info to make an accurate dx.  I am assuming that psychotic depression is a part of MDD.  I never would have even guessed that MDD symptoms would be so intense and severe.  I picture someone with MDD lying in bed and not functioning, but from what was explained to me is that there are many ways MDD can present itself especially in teenagers, girls in particular.

They took her off of the Abilify.  They tried clonadine but she did not do well on it so they added Paxil to see if she can get some sort of relief.  I started Paxil back in April after the incident with the police and I felt so much better within a week, but with everything else since then, I'm not feeling a good but I am starting to get my motivation back and am wanting to commit myself to advocate for her.  I wasn't willing to do much of anything since the 21st of December, including answer the phone.  I ran out of gas.

I am going to ask around to friends and family that have experience with working with teachers and counselors who may be able to offer some free advice as to how to present my daughter's need for a residential treatment facility and if anyone has ever seen a student receive funding... .   what were the circumstances that allowed them to approve it.  The legal jargon will be the least of my concerns since this is what I have been going to school for and can always have someone proof read it for accuracy.

At one point Conduct disorder was discussed however, it is not listed, nor do I want it listed on her profile.  I was told that my daughter will be a hard sell to any facility due to her increased and unpredictable aggressive behavior.  If the doctors can get a good medication regimen in place and she can show continuous stability and progress then we should be able to find a facility that will be willing to accept her.  My only concern is the fact that there are so few places (throughout the country) that offer a total package.  The facilitys that are mostly used in NC are the first available regardless of the type of therapy provided.

If this was a perfect world, I would like to see my daughter in a long term facility that has buku experience working with BPD and has a strong focus on DBT in addition to client based individual and group therapies that educate the kids about their personal dx and empowers them to take charge of their lives.  Our 4 other experiences with the hospitals and intensive in home therapy was that the therapists had the very best of intentions to educate the kids however, they ended up giving the kids an excuse as to why they behave in the manner they do and that this is what they should expect.  I noticed my daughter would say "I can't help it, it's part of my bipolar disorder, you can't hold me responsible if I can't help myself".  Grrrr  If they find something that works on just one authority figure (mostly teachers) then they will go with it until can can go no more and that mind frame is counterproductive for any positive therapy to be effective.  It's harder for my daughter to use her coping skills than cop out and use it as an excuse with no ownership of negative behavior.

We'll see what the treatment team says tomorrow morning.  We meet at 9 and I have so many questions that I need to have answered to better understand what options are available, what their observations have been in relation to MDD vs bipolar II, and any other dx that they were considering may be appropriate.  I'm very glad that she is where she is.  This treatment team have worked side by side with my daughters long term psychiatrist and psychologist, in fact, they trained her psychologist in this facility on this very unit and know both very well.

Everything happens for a reason, hopefully I will be able to create an opportunity for my daughter to experience a miracle.  It is still possible, but only for so long.  The medicaid/obamacare changes set to take place in 2014 has everyone on edge because no one really knows how bad mental health will be cut, bit they do know, and have been warned, that it is going to devastate long term treatment options.  I wish they would start allowing mental health professionals to preview the changes so we would be in a better position to make a more informed decision on where to admit her.

Well, I have enough to worry about so I won't let myself worry about "what if's".

I'll be close by since I have to touch base to get y'all's feedback and experience.  If anyone has any experience with having the state pay through an IEP let me know.  I could sure use some help on where to start.

Googie

Dear Googie,

I can hear in your words your resolve, skills, courage and love!

Others have had success with IEP placement... .  don't let them tell you "no"... .  

This is a fact... .  the RTC's in this country are filled with children whose stays are funded through IEP.

It is hard, it is heart wrenching and it can be done.

You have what it takes to make it happen!

lbj

Do you know for sure that she had been taking her medication? My sister is Bipolar and does experience psychosis if she is off her meds. When she was young she didn't like to take her medication. It sounds like she needs inpatient mental health services. When things have gotten really bad that was what was needed until they figured out a combination of drugs that worked for her. If the hospital had trouble controlling her they put her on Haldol (living zombie) and then weened her off as they started a different drug combination. Sorry. It's tough. It stinks when it seems everyone is grasping at straws and you can't seem to get any positive answers.   

Googie

It's not impossible to get the state to fund... .  it can be a battle but one you can win.  When we lived in Connecticut my ds (13 at the time) was sent to a residential therapeutic boarding school on their dime.  When it came time for high school we could not find an appropriate residential therapeutic school for him in the state.  To be honest most wouldn't accept him. The state of CT picked up the tab for him to go to high school in Maine.

Good luck!

OTH- I only know of two missed doses within 3 and 1/2 months.  I dispensed her meds to her and kept track of everything since she has overdosed in the past.  The problem that we had with her meds is that it was 3 months before she was able to get an appointment with a psychiatrist through the agency that provided intensive in home therapy.  So she went a very long time without med management.  I called numerous providers outside of Easter Seals to have them manage her until she could be established and followed the way it is required by medicaid, but no one was willing to take her on with her history of multiple suicide attempts and hospitalizations.  I can understand although I think it's wrong in a way.  lack of med management may very well be a contributing factor to her behavior escalating.  Trust me, no one fought as hard as I did to try and get her in to be seen because I was very concerned about the amount of time without being seen.  She was on the first dose of 25 mg of Topomax which should have been titrated every 10 to 14 days until the therapeutic dose which can range between 100 and 200 mg.  She stayed on 25 mg the entire 3 months.  I also found myself begging her pediatrician and prior psychiatrist to write scripts for her abilify 10 mg.  Her prior psychiiatrist did not want to write for her at all because she hadn't seen her since March (immediately before her third hospitalization) and did not agree with the meds she had been prescribed, and the pediatrician would only do it one time as a matter of policy.  Also understandable on both accounts.  The medicaid changes really scared a lot of the psychiatrists off when they mandated each doctor to register with an LME that would manage and direct the care their patients were allowed to recieve whether they agree with the directive or not and I respect the psychiatrists that refused to become part of a managed care system that can and has in the past when LME's were used 10 years ago, put patients at risk for disastrous outcomes due to the treatment restrictions that prevent the Dr's from prescribing meds and use therapeutic techniques that have a higher rate of success but costs more than the generic, very basic options.  Basically, the LME's make the doctor and patient jump through hoops based on cost instead of quality of life based on newer more expensive options.



cfh-  I know it's not impossible.  Nothing is.  They told me it would be impossible to fight the IRS and that just motivated me to make sure I won my case, which I did.  The IRS worker said she has never seen anyone in 27 years completely win without legal representation and without spending more than what was owed to begin with.  Needless to say, I am totally looking forward to getting this done all by myself and with a little help from my friends here and there.  I was told that Wake County has not paid for residential schooling for a severe emotional/behavioral student because they have schools that are equipped to provide a safe, positive, and supportive education... .    in decades.  Don't know if I believe them but I haven't ventured down to the central office yet to find out.  Statistics are made public, but I heard they don't make it easy to get any info.  Don't know why, but I guess some politician down the line was concerned there might be an issue of discrimination against students with mental health issues.  I have a few friends that work in the school system that told me that there truly is a level of discrimination against the kids like my daughter, who have the capacity to be dangerous. The unspoken popular view is that they deserve to be sequestered in their own school where they can act violent, regardless of the cause or if the student is at a lower level of cognitive functioning and is unaware of their aggressive nature, because they are out of control delinquents.  I can not wait until I run into someone with that outlook.  Its a shame, but it exists.  On the other hand, there are some wonderful school staff that truly understand the nature of mental illness and want to help but really don't know enough about the legalities to give sound advice.  I found a few places that have caught my attention however every single one of them have severe aggression listed as #1 on the exclusionary criteria which is what she is described in the paperwork and incident reports.

lbj-  How long does a perspective client have to be incident free in order to not to be considered a threat to safety?  No one I spoke to could answer that question.  So I am finding myself back at square one with only one option for her.  I am not satisfied with this option either.  the center is way too far away and there are family participation requirements that would literally split this family apart.  We still need to heal ourselves, individually and as a family unit without having to be mandated to take a 5 hour drive to sit in therapy sessions directed solely on my daughter's issues and then a 5 hour drive back or have to spend money on a hotel (which we don't have, who does?).  Her siblings are unwilling to be a part of anything at the moment and my fiance is still struggling with forgiving her for attacking him and exposing our 6 year old to yet another traumatizing event.  We'll get through it, but we need the ability to ease ourselves in to a routine and not feel pressured by the threat of noncompliance of family requirement agreement where discharge is the only option. 

I understand that violent, aggressive people are most definitely a major liability, but isn't that part of some mental illnesses and is actually listed as criteria for an official diagnosis of many disorders listed?  Where do people go when they are aggressive due to inadequate medication, or an acute PTSD attack?  How long is someone considered too aggressive and how long do they need to be incident free in order to be reconsidered for placement?

So many questions that I really need to get answered before I start this process. 

Googie

This could be a serious issue. What is the review/complaint process for the LME. I don't think your daughter is getting proper treatment. Considering the history you have a good reason to file a complaint. It might be of benefit to start making a stink there. I know it was impossible for my sister to do better (school, therapy) until her meds got straightened out. It is always a bit of a tricky balance. We have been lucky in that she has been able to see the same psychiatrist for years. He has been able to make adjustments when necessary as the drugs will very in effectiveness over time also. He can make better decisions since he has had a history with her and my mother. 

hi googie - thanks. i'm not a doc so i don't know. what sticks out to me is the paranoia about that girl, "looking at her" or having an issue. i had anxiety issues and stuff the only thing i thought was, "holy crap, am i going to die?". i don't recall hearing little voices I couldn't hear.

Nor can I.  I would ask the particular facility if they take students with CD (Conduct Disorder) and let that lead you where it may... .  discovery is all part of that process.  The persistance/pervasiveness of violent behavior may be the determining factor rather than the severity of an few isolated acts.  There were girls at Falcon Ridge who had been "kicked out" of other rtc's for aggressive behaviors... .  giving the parents 48 hours to find a new placement.

While you investigate the policies for placement of children with aggressive behaviors you may want to ask what their protocol is for handling violent students... .  you could be suprised by what you hear.  Many behavior modification programs use long blocks of isolation as punishment... .  I don't recommend a behavior mod program for a teen w/emotional problems.




This is the hard part Googie... .  for the program to be ultimately successful the family must be participants at the highest level that the program/levels of improvement mandate.  The IEP can be written to request funding for transportation/housing for the family to participate in the therapuetic process... .  hope you can get it!  For example, we traveled to Utah (over a 1,000) mile trip every 8 weeks for family weekends, we had an extra trip for my d's first off campus overnight, and we flew her home with us for her first (and only) home visit and then flew her back alone... .  from start to graduation I think there were 7 trips that we made... .  it can get costly.  At the same time... .  the family is all part of the healing process... .  the student heals, the family heals, they reunite healed... .  that is the ultimate goal!  You might be able to get a loan through a behavioral health finance company to fund the transportation if the IEP wont cover it.


Yes, acting out violently is a component for most adolescent disorders.  Even girls that have not had a propensity towards violent behavior can become frustrated in the rtc environment (good!) as they begin to confront themselves and their past... .  It is important that ALL staff are well versed/trained in passive restraint.  

I would encourage you to choose a few programs that you think may be a good match for your d and talk to the intake coordinators... .  keep them on the phone for hours!  The good ones don't mind... .  even if your d doesn't get placed there... .  they are truly people who want to help.  I did and it really helped me educate myself on RTC's in general as well as the individual rtc's I spoke to... .  there are worlds of differences in some of them.

lbj

Hi Googie, I want to echo what lbj said about the family participation in the program. We too traveled a long distance for our daughter's RT placement. Our friend's traveled even farther for their son.

The RTC we used drove the kids home for a weekend visit when achieved. They had a big bus and 2, 15 seater vans. Each went to a different region. Another huge gift is that our RTC had one, on campus, family apartment, available for free. Of course, reservations required and there were limits to how much you could use it (once per month). If you had used your monthly stay, but other families hadn't used theirs, often we could pick up another night. Also, don't discount local hotels. One hotel offered a major discount to families of the RTC. We also had a church family with a second home that was offered too. We thought outside the box to make things work both with distance and financial concerns.

Sometimes we had meetings by conference calls in order to save a trip. Visits were always combined with family therapy.

I tell you all this as I had no clue when doing the research that some facilities had options for long distance families. This RTC had huge family focus in the process, and it was demonstrated by the services they provided to try and make it as easy as possible. Thus, don't eliminate a place without asking these types of questions.

Loved the family apartment for on campus visits... .  help was just a phone call away.

Being Mindful

Update:

The referral was received and is being reviewed.  We should hear something by Tuesday.  I was told to not get my hopes up since her last violent outburst was only a few days ago, and that may disqualify her acceptance.  Waiting is harder than I thought it would be.

Googie