Dear SB and Cousin R,
I cannot tell you wht it means to me to have you in my corner. It means everything to me.
When a parent has a child like this, their friends drift away. When someone asks me how I am, I tell them, and who wants to hear about such things such as what Rachel and the mental health system are putting us through?
I NEED SUPPORT. Hearing your words lets me know SOMEONE is out there listening to me, boosting me, supporting me, and I need that more than anything.
I don't think most people understand that caregivers of these children need a shoulder to cry on, an ear to just LISTEN to. If you have no solutions or words of wisdom, it's okay, just reflect back our (my) feelings, and let us (me) know you're there, holding us (me) up.
I think that's one of the most difficult parts of this is feeling abandoned by so much of my community.
The two of you, in your comments, gave me so much strength, I've been able to stand up for myself and Rachel even more, and to spend more quality time with Joey, and demand more quality time with my husband Sam.
Joey has been doing well enough emotionally, that we're being downgraded from Mobile Therapy to Outpatient therapy, which worries me. I mean, I'm thrilled that Joey's doing so well, but his Mobile Therapist, who comes to our home for 2-3 hours per week, and supports Joey, and me for Joey, will no longer be there for us, the state is not allowing it. Now we'll have to go into a cold office and start all over with some new for one hour per week.
But how do we fight the system? I filed an appeal, but the system is set up so that the evaluating psychiatrist, who had never even met Joey, was the same psychiatrist to review the appeal! How is that objective??
So even less support available to us.
We are very blessed to have a congregation that does everything they can for us, but even a lot of the folks there have pulled away from us as Rachel has gotten less well.
Anyway, the less restrictive hospital agreed after much arguing to meet our demands, and they are slowly trying to wrap their heads around the fact that even though they don't agree ith what we, the parents, want, they have to at least try to comply with it. They're not complying fully, but at least we've got a start. There'a an outside social worker conference calling with our family therapy sessions, to guide them onn how to act more appropriately with us. I.e., we're no longer being blamed for having caused these problems in our child. Instead we're focusing on how to make our relationship better with her now, which has not yet been done in over two years.
Also, the in depth testing is being done, finally, which should show them once and for all that they are dealing with a child who has a deep seated mental illness, and not simply behavioral issues from bad parenting. Why is the Mother always blamed for everything???? The testers have already said off the record that see signs of psyhotic tendencies and fetal alcohol spectrum disorder. Hey, Mommy knows what she's talking about! Imagine that.
I'm feeling so much more at peace now. Like finally someone's listening to me. I don't know if my child will ever return home, but at least a step os being taken to determine wht we're dealing with, so they can adjust the treatment goals and medications accordingly.
Sarah
Saturday, July 17, 2010
Wednesday, July 7, 2010
Family Meeting, yeah right
Me, my ex, one therapist from her regular psych hospital, her case manager, a social worker from the lock down facilty, and Rachel all met last night for a family meeting. Gads, was it a disaster.
It started out with Rachel refusing to acknowlege my existence, and then reaching out for the emergency button to call a code, and laughing maniacally. The lock down social worker didn't see her do it, so I had to tell her so she could call it off. Then Rachel took off from the conference room and went running through the hallways, laughing hysterically, with the staff trying to chase her down.
We talked for a while without her while tried to calm her. The lock down said they didn't see any reason she had to stay there any longer, because she hadn't shown any aggressive or self-abusive tendencies. She refused to shower, brush her hair, change her clothes, or particopate in anything they asked her to do, and she continued to eata foods she was allergic to, and making herself throw up, but that was no big deal....
So they wanted to discharge her tomorrow... which is now today. I was furious. The regular hospital said they were fine with that, and I said I was not. I had been asking the regular hospital to do a full-scale psychiatric evaluation on Rachel since she had been admitted there and it STILL had not been done, and I was not going to okay her release to the regular hospital until I had it in writing that they had arranged such an eval for her.
The lock down social worker said to me if I was not prepared to allow them to release her to the psych hospital, was I prepared to take her home, and I went balistic.
These places terrorize parents, lie to them about their rights and the laws, and I let them have it. The fourth time she was in lock down, they told me if I didn't take her home with me they'd call children's services and file charges against me for child abandonment and then I could lose Joey as well. I took her home. The fifth time she was in lock down, was because she had attempted to burn the house down with me in it because she "wanted a new mother" and if I was dead she could get one. And she had outlined to me calmly, in detail, her plans to murder Joey and my husband during the night. I was NOT taking her home, and I had called children's services, and they told me if I DID take her home that would be putting Joey in jeopardy, and they could take him, so when they made the threat again, I told them tough s$%^. She stayed there for two months until they found a permanenent placement.
So when this lady started in on me again with the same garbage, I told her she should go perform a physiologically impossible act of reproduction on herself, and that she was going to keep Rachel until my demands for her appropriate care at her permanent institution were met. They were all a little taken aback, but there wasn't exactly anything they could do when faced by a parent who actually knew her legal rights, which they did not often encounter.
I also started venting about how the permanent place refused to acknowledge that Rachel could possibly have an organic mental illness, that this wasn't just psychological and behavioral, that she needed stronger medication, and intervention for mental illness, not just intervention for an emotional disturbance. The first hos[ital she had been in, for the first year, had medicated her heavily and left her in front of a videogames screen 24/7. I moved her vecause I wanted her getting therapy too. I had no idea that therapy would be all they would be giving her.
I told them that while they were probably an excellent program for children with merelty behavioral and emotional needs, that was NOT Rachel's only set of issues. She was bprn to severely mentally ill drug and alcohol using teenagers, with the cord around her neck and meconium on her face, had suffered lead poisoning from eating paint, and head injuries from pounding her head against walls. She had absolutely no remorse, and never had.
I told them they may be licensed psychologists, but they were totally ignorant of fetal alcohol spectrum disorder, prenatal drug exposure, early onset schizophrenia, schizoaffective disorder, bipolar disorder, and sociopathy, and they had no right to tell me my child did NOT have any of these problems when they were not knowlegable enough to even know what these issues looked like let alone diagnose or treat them. My ex backed me up on this too, which really surprised me.
Rachel was eventually coaxed back into the room, and she ranted that she was not returning to her permanent placement because they always believed the adults before the children, and never let her do what she wanted. She wanted to go back to her first placement, where she would be left alone. Her rant lasted as long as mine.
It ended with our outside-agency case manager telling me she was going to try to find a place that could do a full-scale psychiatric eval on Rachel. Fortunately my husband had taken off of work, and he and Joey had driven me so I could hide in a novel during the whole ride back home.
Sarah
It started out with Rachel refusing to acknowlege my existence, and then reaching out for the emergency button to call a code, and laughing maniacally. The lock down social worker didn't see her do it, so I had to tell her so she could call it off. Then Rachel took off from the conference room and went running through the hallways, laughing hysterically, with the staff trying to chase her down.
We talked for a while without her while tried to calm her. The lock down said they didn't see any reason she had to stay there any longer, because she hadn't shown any aggressive or self-abusive tendencies. She refused to shower, brush her hair, change her clothes, or particopate in anything they asked her to do, and she continued to eata foods she was allergic to, and making herself throw up, but that was no big deal....
So they wanted to discharge her tomorrow... which is now today. I was furious. The regular hospital said they were fine with that, and I said I was not. I had been asking the regular hospital to do a full-scale psychiatric evaluation on Rachel since she had been admitted there and it STILL had not been done, and I was not going to okay her release to the regular hospital until I had it in writing that they had arranged such an eval for her.
The lock down social worker said to me if I was not prepared to allow them to release her to the psych hospital, was I prepared to take her home, and I went balistic.
These places terrorize parents, lie to them about their rights and the laws, and I let them have it. The fourth time she was in lock down, they told me if I didn't take her home with me they'd call children's services and file charges against me for child abandonment and then I could lose Joey as well. I took her home. The fifth time she was in lock down, was because she had attempted to burn the house down with me in it because she "wanted a new mother" and if I was dead she could get one. And she had outlined to me calmly, in detail, her plans to murder Joey and my husband during the night. I was NOT taking her home, and I had called children's services, and they told me if I DID take her home that would be putting Joey in jeopardy, and they could take him, so when they made the threat again, I told them tough s$%^. She stayed there for two months until they found a permanenent placement.
So when this lady started in on me again with the same garbage, I told her she should go perform a physiologically impossible act of reproduction on herself, and that she was going to keep Rachel until my demands for her appropriate care at her permanent institution were met. They were all a little taken aback, but there wasn't exactly anything they could do when faced by a parent who actually knew her legal rights, which they did not often encounter.
I also started venting about how the permanent place refused to acknowledge that Rachel could possibly have an organic mental illness, that this wasn't just psychological and behavioral, that she needed stronger medication, and intervention for mental illness, not just intervention for an emotional disturbance. The first hos[ital she had been in, for the first year, had medicated her heavily and left her in front of a videogames screen 24/7. I moved her vecause I wanted her getting therapy too. I had no idea that therapy would be all they would be giving her.
I told them that while they were probably an excellent program for children with merelty behavioral and emotional needs, that was NOT Rachel's only set of issues. She was bprn to severely mentally ill drug and alcohol using teenagers, with the cord around her neck and meconium on her face, had suffered lead poisoning from eating paint, and head injuries from pounding her head against walls. She had absolutely no remorse, and never had.
I told them they may be licensed psychologists, but they were totally ignorant of fetal alcohol spectrum disorder, prenatal drug exposure, early onset schizophrenia, schizoaffective disorder, bipolar disorder, and sociopathy, and they had no right to tell me my child did NOT have any of these problems when they were not knowlegable enough to even know what these issues looked like let alone diagnose or treat them. My ex backed me up on this too, which really surprised me.
Rachel was eventually coaxed back into the room, and she ranted that she was not returning to her permanent placement because they always believed the adults before the children, and never let her do what she wanted. She wanted to go back to her first placement, where she would be left alone. Her rant lasted as long as mine.
It ended with our outside-agency case manager telling me she was going to try to find a place that could do a full-scale psychiatric eval on Rachel. Fortunately my husband had taken off of work, and he and Joey had driven me so I could hide in a novel during the whole ride back home.
Sarah
Friday, July 2, 2010
Back history
The one post in 2009, followed by 8 comments, is actually multiple posts. I was commenting on my own post instead of starting a new post, because I didn't know blog etiquette yet. Just so you know.
She's in lock-down
Rachel attacked her two lead therapists so violently that they had to call 911. I met them at the emergency room where it took 12 people to restrain her and get her into a 4-point restraint system, and they had to shoot her full of adult-level anti-psychotic meds. I stayed with her at the emergency room and after the meds turned the four hours of raging into crying hysteria - with her still physically restrained to the bed, I sang prayers to her until she finally fell asleep. She was eventually transferred to a locked psychiatric facility. They don't have them in our state, so she's been moved out of state temporarily. The doc there told me they're putting her back on anti-psychotics, which the regular psych hospital had taken her off of. I said Thank God. I slept all day. Still need more, but Joey's home from camp any minute.
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