This is Joey's favorite song.

It just keeps falling apart

Im not exactly sure what happened in October but it started small. Joseph was having difficulty with school and at home. He had quit football which was okay because those meat head, over weight wanna be pro football once were good 30 years ago coaches sucked every joy out of the game for Joey. Anyway it all started to fall apart and with each incident things got worse. Joseph was doing the in and out dance of hospitalization again. I cant even count how often we had to have police come to our house. I was getting phone calls from the school that Joey was becoming so aggressive and violent he would have to be removed.

I was starting down the path of residential for Joseph again and happy to find out that our insurance through my work had Cincinnati Childrens as their in network provider for residential. I did not get help from the hospital to help set up the referral for Joseph so it was up to me. I called Cincinnati Childrens and they remembered me from before. Joseph had no problem meeting their criteria and being excepted. But the insurance.... By the time we had gotten to this point Joseph had been hospitalized in Ohio 6 times. The insurance denied Joseph stating that we had not exhausted our efforts for less intensive means of treatment. Excuse me here but what the hell hadn't we tried!!!!!!!!! Meanwhile while fighting with the insurance Joey kept deteriorating. We couldn't get Joseph on medicaid for supplemental insurance because Paul and I make too much money lol.  We enlisted the help of Child Services. This would take us down another path. Our fist case worker was great she got to witness Joseph at his finest. He had been kicked out of school because of violence and was having a meltdown when she showed up at our house. We had meeting after meeting with every service the county had to offer. The problem was none of what they could give us we hadn't done for years already. We were getting nowhere with the insurance so child services started looking into being able to fund part of his stay at a facility. The day after Joseph was denied again by our insurance I received a phone call from his school. Joseph was with the school police officer and I needed to come pick him up. Joseph had assaulted his teacher. We had him admitted to the hospital again. I could not believe no one could help us. Assaulting teachers, jumping out of our car on the interstate, giving me a bloody lip, how could he not meet their "medical necessity"?!

Joseph had missed every holiday with us because he would end up in the hospital. child services eventually placed him in a therapeutic foster home till we could get funding lined up for residential. Joseph had problems in the foster home too. No matter where he went he was getting worse. Christmas was fast approaching a Christian was coming to visit. Joseph was going to come home to us for the holiday. He was home less than 6 hours. Joseph's I pod was not charged and wouldn't work right but he wanted it now! I told him he would need to wait until it charged and that set him off. He came at me swinging and screaming. I picked up max to get him out of the way as Joseph began throwing things. I made it to the kitchen where Joey cut me off and grabbed a BBQ fork, raising it up he charged at Max and I. I pulled the baby into our half bath and called the police. I could hear the destruction going on outside the door as I told dispatch to hurry. I thought he was going to break the door in. I heard the police come through the front door and started shouting stop police! Joseph took off outside and was running from them. The police officer got a hold of Joey and Joey kicked him several times. I stood in the house surveying the damage. The bathroom door had a dozen holes in it. All my Christmas nutcrackers were knocked over several of them broken. There were holes in the walls, an overturned table and broken lamp. The police officer told me not to touch anything. It was some officers I knew they had been here before. The officer asked what they are doing to try and get Joseph treatment and I gave him the short version of the story. They called the district attorney and filed a report this time with the hopes that with court involvement they could order treatment and the insurance company couldn't do anything about it at that point. So right before Christmas away Joey was again to the hospital.
After the first of the year it had been decided that Joey would go to treatment we were just waiting on Child services director to say yes to funding. We were running out of time on the therapeutic foster home and couldn't safely bring him home either. When we finally got an answer it was the worst choice of my life to make. I got a phone call at 6 pm and was told that Child services could fund Joseph's visit if we gave temporary custody to the state. To make matters worse I only had till midnight to make the choice because once I got paid at midnight we would have "too much money". After all the fighting and pushing I would have to give him up to get him help. Now everyone will say its only on paper and just for funding but does it really matter? We are still decision makers for him in a round about way and still 100% involved but this is what I have to do to get him help. I cried for days. I couldn't believe I had to do this. Joseph was transferred in the beginning of January to the facility and that is where he is today. We see him every week and talk to him everyday. I see such little improvement at this point I don't know what to think. I know it will take time but I am not seeing forward motion. I sometimes worry that I will know Joseph the rest of his life in institutions. The hardest part of all this is the inability to be able to help me son. I cant fix him, I cant take away his pain. I would give everything I own in this world to make him better.

The summer bliss....

Joseph was home. I spent the few weeks that I had before I went back to AZ scrambling to get the house together and Joseph set up with a summer program. I enrolled Joseph in a summer YMCA program that had a ton of fun activities. I was truly hopeful Joseph was going to be able to enjoy all of them. I returned to AZ and spoke with Joseph and Paul daily. Everything was going well for Joey. I thought maybe we finally had this thing under control. Paul and I were less than impressed with his out patient psychiatrist but that was something I was going to work on when I moved out to Ohio. I came back out to Ohio for a visit in August and got Joseph prepared for the start of school. We did some clothes shopping and I met with the Tipp City school district to determine what placement would best accommodate Josephs needs. We decided on a partial self contained classroom very similar to what Joseph was in when we were in AZ. He would be in the self contained class for his core subjects but mainstreamed with "typical" kids for his extra courses, lunch and recess. We felt it was good that Joseph only had one other kid in his class. We also enrolled Joseph in tackle football. Something he could not wait to be a part of! He had played flag for years and was very good at it until he got sick. See the medication he was on had caused Joseph to gain a lot of weight and he was slower and tired more easily. Joseph's size however gave him great advantage to play defense in tackle. Joseph started out doing really well in school and in football. I was anxious to join my family and be there for Joey. Here is where I must make a side note about Christian Josephs younger brother. When we decided to move to Ohio we made the choice for Christian to stay in AZ with my mom and stepdad. Not an easy choice by any means but here is our rationalization. Christian had been with mom and Don for a long time because of Josephs instability and violent behavior it was best to keep their contact with one another minimal. We wanted to give Joseph the time to transition and not have Christian get unintentionally neglected because Joseph is very time consuming. Its not easy and everyday I am not sure if I have made the right choice. I miss christian so much. Our family is not complete and my heart hurts that I am missing so much of his life. Hopefully we can have him with us or at least closer to us soon. Anyway back to Joseph. Things were going well until about October.... 

Freaking Fox Run

So picking up where I left off. Joseph was in the residential facility and our family was all separated. Joeys GAF score at admission 27. At the beginning I had truly believed that this facility was going to help Joseph. I was excited at the fact they were willing to accommodate the unique situation we had and work with our family. Looking back now and knowing what I know I would not have placed Joseph there. The facility housed 150 kids all with emotional and behavioral issues. I don’t care what anyone says about the amount of staff you have, there is no way to effectively work with these kids when you have so many of them. I would try and call every night to talk to Joseph but so many times we could not get through and when I did Joseph usually was sad and crying or angry.

Joseph had family sessions with me over the phone along with his counselor. I think his therapist did the best he could with Joseph but as time passed I could see little improvement in Joseph. I called several times to speak with the psychiatrist assigned to Joseph only to never get a return phone call. Weeks passed and the facility was doing everything the can within the first month to tell me he was going to be discharged soon.

Paul and I had already scheduled that at the end of May he would be flying into Arizona when we would than load up the moving truck and proceed to drive all of are stuff across country and move into our new home. We started driving on a Monday morning and the next day received a phone call from the facility stating that Joseph was going to be discharged as soon as we arrived in Ohio and could pick him up. The facility asked where we were in our trip and we explained we were in Texas, only Texas they said. I than informed them it was a 2000 mile trip and we were driving a 26 foot truck with everything we owned in it and it was going to take us a few days to get there.  They asked when we would be able to pick up Joey, I lied and said Friday, figuring that would give us enough time to get to Ohio and be able to unpack. I was very upset needless to say, not that I didn’t want Joey home with us but he had only been in the facility for 2 months when typical treatment is a minimum of 6 months. To top off all the mess the facility made virtually no follow up for Joseph when he transitioned home. Just prior to Joseph being discharged he had several violent outbursts. Joseph on one of those occasions attacked staff and other kids but the facility or should I say the insurance did not feel he met medical necessity.


Paul and I rushed to drive across country making the move in three days. We arrived on Wednesday and managed to unpack and put the house together by Friday so Joseph could just come home. It was very stressful to say the least. We had find therapy for Joseph and a summer program for him to attend since Paul would be working. No medications were ever changed and I never heard from a psychiatrist the whole time Joseph was there. I later found out why. After months of asking for Joeys records and never receiving them for one BS reason after another I got my hands on them. I never heard from a psychiatrist because Joey was never seen by one other than at intake. The ONLY note from a psychiatrist in his records was from admission. Can you believe it?! Joeys GAF score at discharge 47. Worst of all his discharge states " The patient was discharged due to lack of "medical necessity" with regards to residential treatment." The discharge summery goes on for 3 more pages to say that the patient continues to struggle with, has made minimal progress and continues to require intensive treatment and yet he didn't meet standards required. Sigh what a great system we have for these kids. 


When I picked Joseph up I was so thrilled to see him, hold him and hug him. He looked good, had lost weight and for the moment seemed happy. We enrolled him in a summer camp program and set him up with a out patient psychiatrist recommended by the facility. At this point all we could do was hope he would do ok and make it through the summer. I returned to AZ and left Joey with Paul who did an amazing job caring for him. Day by day passed and it looked as though Joey was finally stable..... 

Ohio here we come

Shortly after the wedding Joseph was having some trouble again. We can truly be thankful he made it through the big day without incident though. He was at my dads house and we are really unclear what sent off this occurrence but Joey ended up physically attacking my dad and breaking every window in the front of his house which totaled $1800 in damages. Joey was taking by police to the hospital  It became very discouraging that they knew us by first name when we came in the ER doors. These nurses became like family to us and I am truly great full for them. This time we were making sure Joey went to a residential facility, I only wish it was that easy. Every clinician involved in Joeys care both in patient and out patient believed this was best for Joseph however the insurance company again wanted to make a big problem of it. After one conversation with them throwing out terms like liability and endangering my son's welfare they very quickly came up with a facility in Ohio that had a ready bed and would except him and was in network. So it was done. 3 short weeks after my wedding my husband and Joseph were going to Ohio and I was staying behind with Christian and Max until my Ohio nurses license came through. Problem.... just 2 days before we were to board a plane for Ohio Joseph's WBC's dropped to a dangerously low level. This was secondary to the tegratol, which could now be added to a growing list. Seraquel = paralysis, Geodon = prolonged QT etc.  So Joseph had be taken off quickly and lithium brought back up. They could not discharge Joey to go to Ohio tell this happened and with plane tickets purchased and the facility only holding a spot for a limited time, it was very nerve racking. Needless to say we made it. Joey was discharged and we took him straight to the airport. He actually did well with all of this. This was another of the hardest days of my life. We did the intake at the facility and that is where Joseph would be for the next 2 months. I want to take this opportunity to say I have the most amazing husband in the world who moved across country from his wife and biological son, and would drive 3 1/2 hours one way every week to visit Joey for 2 hours. He did all of this for Joey and for that I love him. So there we were, Joey and Paul in Ohio, the rest of us in AZ, hoping a praying that this was going to help.

and the bottom drops out....

After some time of Joey doing well we thought well we can handle the little bumps in the road but he seemed to be doing fine. That's what we get I guess because Joey started having trouble again. Hallucinations and night terrors came back. We thought we could ride it out with a few medication changes. Joseph had had a few rough days at school and we were trying to control things. He was home from school one afternoon and playing with kids in the neighborhood. I was sitting on the couch with Max our newborn when Joey came storming in the door. I asked him what was wrong and he went ballistic. Joseph came charging at me and grabbed a Rubik's cube and began striking me in the back of head. I bent forward trying to place myself over the baby to protect him. I managed to run out the front door. The neighbors heard me screaming and came outside. I told them to call the police. Joseph was still inside the house throwing things around a yelling wildly. Joseph than came out of the house and took of running down the street. Shortly after the police showed up at our house. One officer began taking a report while a few others started looking for Joseph. Joseph was found down the street and the police brought him into the house. We were trying to explain to the police what was going on when Joseph grabbed some cellophane wrapped and tried wrapping it around his head and neck. The police intervened and Joseph screamed out "I wanna fucking die!" The police were trying to be careful  with him when Joseph went after them. Kicking, hitting and screaming. In order to keep him safe from himself and from hurting others they placed him in handcuffs. No one should ever have to see their own child in handcuffs. The police were unable to get an ambulance to come and transport Joseph to the hospital so they took him there. Joseph was readmitted for stabilization. This would be Joeys 12th hospitalization in less than one year. This was one of his longest stays at over a month. At this time we began talking about a future for Joeys care. We knew we would be unable to stay in AZ because of Joeys heat intolerance but we needed to be close to family. Paul's family were still in Ohio and we made the difficult choice that that was where we needed to go. We started to look into residential treatment for Joey. acute stabilization was not helping Joey anymore. He needed long term intensive treatment. We were working hard for Cincinnati children's Hospital  because they have such high success rates for bipolar children but it was not in network for our insurance, which would have cost us $4000 just to get a bed not including daily costs. I know it shouldn't sound like everything came down to money but in all reality we couldn't afford to send him there. With the wedding coming up all we could hope was that Joey could get out of the hospital and be able to be there for the big day.

Joseph was discharged just before the wedding and was able to attend. He was so handsome in his tux. Everything was beautiful. I have to make a side note here that despite the difficult things said about Joey, his disease and our struggles. He is an amazing child. Joseph is so loving and wonderful. Unfortunately at times his disease keeps us from seeing those great things.

Pictures

The Beginning

 I was returning from one of my weekly trips to visit him when the thought of doing a blog just hit me. My hope is this will raise awareness of the everyday struggles a family of a bipolar child can have.  I also have the hope that my friends and family who read this can know what Joey is facing a continue to be the support they have been over the last few years.

So Joey has had problems for as long as I can remember. Looking back at the huge binder of information we have kept from all his appointments and evaluations it has become more apparent just how bad it was even before the diagnosis. At the age of 3 Joseph was having extremely violent outburst. It was difficult for anyone on the outside to understand. We just constantly heard it was typical for his age or geez lady parent your kid better, looking back we know it ran so much deeper than that. We had Joseph evaluated and at that time his social emotional functioning was 3 standard deviations below the norm, which is significant for those who might not know. Joseph began having counselling and at home interventions which would increase and continue through the years. I could go on and on for years but that's not why I am here. Ill bring you up to the breaking point.

By 2010 Joseph and the family had services weekly that included; in home respite workers, in home behavioral therapists, sibling counseling, family counseling, and a psychiatrist with medication management and was on special accommodations in the school settings.  Nothing seemed to work. Joseph at this point had been diagnosed with EVERYTHING; PTSD, ADHD, ODD, IED you name it they tried to treat him for it but nothing helped, at least not for an extended period of time. So we tried a "newer" therapy called EMDR with the hopes that this would help. I wont go into the details of this therapy because its rather extensive and a little confusing but it had been shown in studies to greatly improve impulsive and aggressive behaviors. So needless to say we were willing to try anything to help Joey. I drove Joseph every week 45 minutes to therapy and waited to see results, well we got them just not how we had hoped.

4 months into EMDR therapy Joseph started discussing in his sessions about the different people in his head that talk to him and he sometimes sees. He describe "little man" as he called him who was like a baby but protected him and the scary lady who would yell and scream at him and scare him in the night. Joseph began having night terrors again and sleep walking. His behavior became more erratic and violent. Thinking back I can not remember what exactly happened leading to Joseph's first hospitalization but I remember it taking 6 staff members in the ER to restrain Joseph from hurting himself and others. It was the worst day of my life having to admit my son little did I know it would be the first of many.

On his first admission to behavioral Joseph was diagnosed to have bipolar disorder. Something we knew all along but no doctor would diagnose. Joseph was started on depakote and seroqual for mood stabilization and after 1 week was discharged. A huge weight had been lifted from more shoulders. Throughout the week he had been in the hospital and slowly stabilized on medication I saw a huge change in Joseph. I finally felt as though I had my son back. Joseph seemed truly happy for the first time in a long time. This of course would be extremely short lived.Joseph's GAF at discharge 30.

The following day after discharge, Joseph, Christian, Paul and I went to a boy scout outing at a pool and Joseph seemed to be doing great. Everything was going fine and we were there for about 2 hours. We went home and Joseph fell right to sleep on the couch. It was mid afternoon and he was exhausted. Joseph awoke about 2 hours later in what I can only describe as a "sleep walk" state. His eyes were open but he was completely unaware of his surroundings. Than he began screaming at the top of his lungs. Just a blood curdling scream. We rushed to him to try and calm him but he just screamed more. His pupils were the size of saucers and he didnt even appear to know where he was or who we were. He just kept screaming his little body just trembling and than he laid down and was quiet, asleep again. Five minutes of sleep would pass and this cycle would start all over. I called the hospital not knowing what to do. They were not much help over the phone needless to say. I was scared I had no idea what was going on with my son. Somehow Paul and I managed to get Joseph into our car. Paul sat in back with Joey and I drove about 100 miles an hour back to ER. This behavior continued while in the ER. No one could explain to us what was happening. I was worried Joseph was having another psychotic episode. After 4 hours Joseph kinda snapped out of this state and was calm finally falling asleep. He was readmitted for observation. It was determined Joseph had extreme medication sensitivity in combination with heat and sunlight. You can imagine how well this worked in AZ when the doctor explained if it was over 90 degrees Joseph would not be able to have extended time outside. Joseph's GAF at discharge 45.

Joseph returned home but we soon learned this would become a pattern. Joseph had a major meltdown and became dangerously violent one day believing everyone was trying to poison him. Joseph was admitted for the third time in less than 3 months. Medications continued to be adjusted with slow improvements until Joseph had a severe dystonic reaction. What that means is that Joseph woke one day unable to move, he was paralyzed and his arms were contracted and contorted. The hospital had to call a rapid response team and administer IM injects of benadryl. The dystonic reaction was reversed however Joseph will have residual hand tremors for the rest of his life from this. This extreme sensitivity threw a wrench into treatment with Joseph. At that time Joseph was taking the "typical" medications for stabilization and now had to medication regulated in a different manner. Joseph's GAF at time of discharge 38.

For those of you still reading and wonder what a GAF is that I keep referring to let me explain...(Wikipedia)

The Global Assessment of Functioning (GAF) is a numeric scale (0 through 100) used by mental health clinicians and physicians to subjectively rate the social, occupational, and psychological functioning of adults, e.g., how well or adaptively one is meeting various problems-in-living. The scale is presented and described in the DSM-IV-TR on page 34. The score is often given as a range, as outlined below:

91 - 100 No symptoms. Superior functioning in a wide range of activities, life's problems never seem to get out of hand, is sought out by others because of his or her many positive qualities.

81 - 90 Absent or minimal symptoms (e.g., mild anxiety before an exam), good functioning in all areas, interested and involved in a wide range of activities, socially effective, generally satisfied with life, no more than everyday problems or concerns (e.g., an occasional argument with family members).

71 - 80 If symptoms are present, they are transient and expectable reactions to psychosocial stressors (e.g., difficulty concentrating after family argument); no more than slight impairment in social, occupational, or school functioning (e.g., temporarily falling behind in schoolwork).

61 - 70 Some mild symptoms (e.g., depressed mood and mild insomnia) OR some difficulty in social, occupational, or school functioning (e.g., occasional truancy, or theft within the household), but generally functioning pretty well, has some meaningful interpersonal relationships.

51 - 60 Moderate symptoms (e.g., flat affect and circumstantial speech, occasional panic attacks) OR moderate difficulty in social, occupational, or school functioning (e.g., few friends, conflicts with peers or co-workers).

41 - 50 Serious symptoms (e.g., suicidal ideation, severe obsessional rituals, frequent shoplifting) OR any serious impairment in social, occupational, or school functioning (e.g., no friends, unable to keep a job).

31 - 40 Some impairment in reality testing or communication (e.g., speech is at times illogical, obscure, or irrelevant) OR major impairment in several areas, such as work or school, family relations, judgment, thinking, or mood (e.g., depressed man avoids friends, neglects family, and is unable to work; child frequently beats up younger children, is defiant at home, and is failing at school).

21 - 30 Behavior is considerably influenced by delusions or hallucinations OR serious impairment, in communication or judgment (e.g., sometimes incoherent, acts grossly inappropriately, suicidal preoccupation) OR inability to function in almost all areas (e.g., stays in bed all day, no job, home, or friends)

11 - 20 Some danger of hurting self or others (e.g., suicide attempts without clear expectation of death; frequently violent; manic excitement) OR occasionally fails to maintain minimal personal hygiene (e.g., smears feces) OR gross impairment in communication (e.g., largely incoherent or mute).

1 - 10 Persistent danger of severely hurting self or others (e.g., recurrent violence) OR persistent inability to maintain minimal personal hygiene OR serious suicidal act with clear expectation of death.

So as you can see Josephs social and emotional functioning is not very good. So how can they discharge him home might you ask. Two words and in my opinion the two most hated words in the English vocabulary; Medical necessity. What does that mean? Well its your private insurances way of saying we aren't going to continue to pay for a stay. Needless to say in all of Joseph's hospitalizations his discharge GAF was NEVER above 50.  But that's a whole other blog if you get me started. 

Joseph continued to struggle. He was given every accommodation we could avoid him having to be moved to a self contained classroom. Joseph's behavior was just to difficult to control and he was unable to maintain in a regular classroom setting. We moved him to a self contained classroom and placed him on an IEP. After countless hospitalizations and several medication changed Joseph seemed to stabilize for a period of time. Of course he was taking up to 20 pills a day and his monthly medication costs were $250. But he seemed to be better.