A long update from me

Discussion in 'General Parenting' started by zba189, Mar 30, 2011.

  1. zba189

    zba189 Guest

    Things have changed so much since I last posted about my son that I thought an update was in order. Please excuse the length of this post. I told my husband the other day that some of this tale seems so far fetched that the only people that would understand it and believe it would be ya'll.

    In the middle of December, T was hospitalized for aggressive behavior (I hate that those words seem so mild compared to what he did). The acute unit changed his medications and started him on Abilify. He spent a week there "stabilizing". He was released to day treatment for two days (They were closed for three days for the Christmas holidays).

    The Monday after Christmas, he went to day treatment and then came home. The holidays were rough, but I thought it was just due to the anticipation of Christmas and all the expectations that come with it. I was wrong. On Monday, after spending the day at treatement, T become violent with easy child 8 and myself. He was very aggressive and tried to open a moving car door (thank goodness for child locks) when that didn't work he tried to push himself through the car window. We admitted him to the acute unit again.

    There he became more and more violent and explosive. After much discussion, his doctors began to lower his Abilify dose and added Depokate. Because of his extreme behavior, he spent another two weeks in the acute unit. They released him to a treatment foster home because they could not stabilize him but our insurance was pressuring them to release him.

    He spent 40 days in the foster home which was a disaster. The foster parents lived two blocks away from us. So when ever there was an issue, they would call me to come and take care of it. If he misbehaved in school (something that was new, he was able to keep it under control at school with us but not at home) - the foster parents called me to handle it. Now keep in mind that my husband and I are paying thousands of dollars after insurance for this private program. The one time I was unable to go to the school because T had peed his pants (something that began to happen every single day for weeks on end), I was written up in their weekly reports. T had stopped calling me Mom and was referring to me by his foster Moms first name. He never asked about his siblings or his other family. Although we visited him often, he has started to pull away from us. Almost as if once someone else was meeting his immediate needs, his tie to us were no longer there.

    T became more and more aggressive throughout his stay with the foster parents. He bloodied his foster sister's nose, he blacked his foster mother's eye three times, he told students at school he wanted to kill them (and gave a plan to do it). He drew lengthy plans about how he planed to kill himself. He began to fall into psychosis, seeing things that didn't exist and hearing voices. The foster program was still sending him off to public school each day. He was meeting with their therapist every week and she was reporting that his behavior was concerning. They were suppose to be managing his medications, but refused to take him to any medication management appts because their program doctor didn't not accept our insurance and we don't qualify for medicaid. My husband and I were taking him ourselves to have his Depokate levels checked (his levels stayed in the solid 95-100). He was weaned totally off the Abilify following the procedure that the acute unit had set forth. His behavior was increasing, but the foster program then began discussing releasing him back home to us because our insurance coverage was running out. We keep saying, "No something is wrong here". He is getting worse and worse everyday, that's when they started having him rate his suicidal thoughts on a number scale every hour. The foster parents would then at the end of the day, see how bad he was and report to the therapist.

    After finally having enough, I made an appointment with his psychiatric. doctor who he had been seeing after his first admit to an Residential Treatment Center (RTC) and picked him up from school to take him. psychiatrist took one look at him and admitted him to their acute unit. There he was diagnosed as bipolar. He has spent two weeks there, where they have up his Depokate because his levels would read 100 one week and then drop to 45 the next. They started him on Geodon but it does not seem to be helping. Their words to us, last week, were we can't stabilize him we are just babysitting him at this point.

    During this time, I have been calling every program in our state for help. T can't come home, it is doubtful that he will ever did able to live with us again. The lines he crossed here were extreme and lacking in all humanity. And they were somewhat mild compared to how far he has progressed since December. Our insurance has washed their hands of him and is refusing any more coverage. We started this journey 9 months ago, with no debt. We are now swimming in it. We don't have the thousands of dollars a month that it would take for the level of care that T needs.

    The good news is that after the 800th phone call, I finally found a way to get him into a state ran Residential Treatment Center (RTC) program for an evaluation time period. I know that is seems wrong to say that it's good news but I have come to terms with the fact that what is normal for a family is not going to be so with T. We met with them last week and although their focus is reunification, after reviewing T's file they agree with several other professionals that it might not be the correct course of action for him. T will be admitted to their program next week for an undetermined period of time. They said that they usually admit for 4 months but that on occasion there have been kids that stay much much longer (they won't say how long that was) and the T appeared to be one of those kids. We will have to pay child support for his stay, but it is actually less money than what we have been putting out for care each month with insurance coverage. The team was amazed with how knowledgeable my husband and I were. One doctor said, "you both know more than most first year medical students".

    As of right now he is safe in the acute unit. We have contacted a lawyer regarding our insurance company and their lack of following the mental health parity law. That is a battle that I'm willing to fight.

    I have never in my life fought for something so hard without any "real" positive effects. I'm spent. We started this journey back in July, knowing that something was not quite right with our son but thinking we were just looking at an extreme case of anxiety that could be handled with a little bit of therapy. We couldn't have been more wrong.

    Eight months later, we have had four acute unit stays (in three different places), one six week stay at an Residential Treatment Center (RTC), one 40 day stay with treatment foster parents and countless doctors and professionals coming in and out of our lives. Some offered great advice, some not so much but they all left us with something that we have learned. I know our journey is moving forward and is not anywhere near completion, I grieve everyday, but I'm proud of how hard I have fought for my son. I hope that through all of this, one day I can see that fighting as hard as I have as lead to something positive (however small that might be) for him. I am not ashamed of anything I have done in the seven years that I have been his parent. I have learned that I'm a whole heck of a lot stronger than I ever thought I was or could be.
  2. AnnieO

    AnnieO Shooting from the Hip

    Wow hon... You've been through the wringer.

    I don't have any magic words, but I wanted to let you know we are here.
  3. JJJ

    JJJ Active Member

    Wow, I got flashbacks reading that. I am so sorry that you had to go through all of that. We went through a similar hell with Kanga, all of qualified for PTSD diagnosis after she was done with us.

    Remember the joy when you got the call to adopt them, when they first came home, remember the hope that with therapy, love and consistency that they could thrive, remember the first time they raged, remember the first time they injured another family member, remember the first crisis call, the first psychiatric hospital stay, the first time you realized that this child could not ever come home. Not exactly all the "firsts" we planned.

    Your son is very, very young. Kanga was 13 when she went into residential and we live with a low level panic that we would lose funding, that some new 'treatment model' would push her out of residential, that we would be caught between having to bring her home or risk being charged with child abandonment and losing the other kids. Have you considered disrupting the adoption? I don't know what state you are in or what type of adoption it was, if that is even possible for you. There is another poster on here who had to disrupt one of their adoptions due to the violence and abuse that the child brought into their home. Eleven years is a long time to pray that funding hangs in there.

    If you continue to parent him from afar (like we do with Kanga) or if you choose to disrupt (like MWM), know that we are here for you, without judgement, with support, hugs and nekkid chicken dances (lol).

    How is your 8 year old? Is he/she recovering? I know it helped my kids alot just be able to do 'normal' family things that we hadn't been able to do when dealing with Kanga's crisis. (A good note is that after 3 years of Kanga being out of the house and over 1 year of no contact between them and her, our kids are all doing great -- no more nightmares :) )
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Wow. I'm so sorry. Do you know anything about the birthparents? Did he come to you at birth or older? He is awfully young to be where he is at, but then I've seen it before, especially when kids were exposed to substances in utero or thrown around a lot in their early years.

    Maybe you can get disabiilty for him. That would include Medicaid.
  5. susiestar

    susiestar Roll With It

    I am sorry that things have been so scary and hard. It is just devastating when you realize exactly how sick or hwatever your child is and how little any of your efforts actually accomplishes. I know this has broken your hearts. You have done everything you possibly could, so do your best to not beat yourself up. You, husband and the ohter kids ALL need to see a therapist - indiv and as a family and you and husband also as a couple. Otherwise you just are not going to be able to come out of this on better footing.

    I hate insurance companies. Kudos for being willing to fight them about the parity laws. Lots of hugs
  6. DaisyFace

    DaisyFace Love me...Love me not

    I am so sorry to hear this! How devastating for the whole family...

  7. zba189

    zba189 Guest

    difficult child was adopted through a private agency. He was adopted at birth. They are going to be doing some genetic testing on difficult child at the state program. One of things they are looking at is the possibility that he carries a gene that makes him metabolize drugs faster. That would explain why that he has had such poor responses to several different families of drugs. We have contact with his birthmom, who claims that she never drank or did drugs but that really doesn't mean anything. Sadly, I don't have a ton of trust in her. She does have a NonVerbal Learning Disorder (NVLD) and her mother says that birthmom suffered from extreme depression very young. She is odd, but functioning. She is pushy and her expections of me through all of this are madding at times but she is not unlikeable or at all violent. She reminds a little of an injured bird, she tries hard to fit in. She presents a lot like someone with bipolar, mild by still too many extremes to be considered stable. We have met with her several times in the last few months about difficult child. We mainly were open with her because she is having other children (not through the same birthdad) and difficult child seems to follow her genetic makeup. We thought we owed her the information that something has gone very wrong with T.

    easy child 1 is doing alright. We immediately put him into therapy when we saw how much of a victim he was in all of this. difficult child did a lot of horrible things to easy child 1. One of things that made my heart ache was when the therapist said we didn't have to worry he wouldn't have to report anything to children services because it was abuse committed by another minor and not an adult. I would think abuse is abuse, but what do I know. easy child 1 hasn't been unaffected by this in the least, but he seems to be coping. His schoolwork has taken a dive, but that's partly due to the fact that all of us have been in survival mode and husband and I haven't had the time to sit down and work with him like we should have. husband and I have tried our very best to give him the chance to talk about anything he wants to talk about with us, other family members, and his therapist. We have also tried to be open with him and at the same time not given him too much information for him to handle.

    As for disability, that has been a confusing trip. I applied for SSI for difficult child, but was told he would only qualify if he didn't live with us. The same with Medicaid. Our insurance won't cover him for the services that he needs but in order for him to get the services he needs and coverage for them we need to give up custody. Through the state Residential Treatment Center (RTC) program, they will qualify him for Medicaid but if he were to come home to us, they would then deny him further coverage.

    The long term options that we have been given are (by several different professionals) (1) to give up our custody or (2) place difficult child for adoption through a private agency. We have retained a lawyer (different than the one who is handling the parity issue) who would fight an abandonment charge and only settle for dependency if we were to give up custody. The second option is not on the table right now because difficult child is not stable enough to live anywhere outside of a secure hospital like setting. If he was to become stable, we might discuss this but it just doesn't sit well with husband and I to place him with another family knowing that he could become dangerous at any time. It just seems dirty.

    I will say that through this, I have found some positive things. None of the following should be considered smug on my part, please don't think that is my intention. My marriage is actually stronger. husband and I know that this easily could lead to the end of a marriage but we are trying our best to hang on. He is very strong and he has put up with my obsessing at what should have been and what could still happen. He listens to me and reminds me to take a step back and regroup. We are closer to our parents who although took sometime to come around are now in complete support of us. They have lost their grandson but are determined not to lose the rest of us as well. If they don't agree with our course of action, they keep it to themselves which is the best we can ask for. I have come to find that I have an amazing circle of very close friends. There are not many of them, but the ones I have are nothing short of wonderful. They have rallied around me, offered the type of advice that is supportive and not judgmental, stepped up to watch my PCs when needed and just listened to me. I have always be a very independent person who never liked to ask for help. In fact I took pride in the fact that I never had to ask for help from anyone. Well, through all this I have had to ask for help from people and it has humbled me greatly. My faith has be tried and it is not a strong as it should be but I haven't lost it. I have learned that faith is what is left after you no longer have hope. Up to this point, I have come through this stronger than I ever thought I could be and grateful for the love that people have for us.
  8. TerryJ2

    TerryJ2 Well-Known Member

    Oh, zba, wow, I am so sorry, but so glad that you know you have tried everything. Grieve as much as you want. I hope that at some point, he will remember you and be able to write to you or talk to you in a normal way.
    In the meantime, all you can do, as you pointed out, is protect your family, make sure he is safe, and move on. What a lot you have all been through.