Advocacy Part 3
"And I will lead the blind
in a way that they do not know,
in paths that they have not known
I will guide them.
I will turn the darkness before them into light,
the rough places into level ground.
These are the things I do,
and I do not forsake them." ~ Isaiah 42:16
I can remember going up for prayer after one of our pastors gave a message from Exodus on the Israelites being ordered to make bricks from straw by Pharoah. So appropriate because that is how I felt. I had been making bricks from straw for a long time and had no idea where the next bit of straw was going to come from.
I also remember when I asked for prayer, I told my pastor that I was asking God to just give me something...anything! But then he replied with wisdom that I will never forget, "Why don't you just follow God blind"?
Somehow, that was enough for me to hear. And blind I was, but that was o.k. Because really, isn't that what faith is? "the evidence of things not seen..."
And so the story resumes from here...
Our son is in a new situation now. A group home with 4 other men. We made it through the holidays somehow and it's the start of a new year. Relationships begin with the group home manager and ourselves, as well as the person who oversees the entire staff and home. A schedule is developed for our son, he is assigned to a day program that is managed by a recovery organization where he attends a few times a week, as well as doctor appointments and group session at his clinic. Only there is a problem: our son does not want to attend or participate.
To recap, our son is recovering from a year of decompensation into psychosis, 4 hospitalizations, 4 severe medication changes. Not to mention being placed in a group home with people he doesn't even know. Add to this that he still does not fully recognize that he is ill and you can safely presume that it is to be expected that he does not readily embrace the idea of "group sessions" with strangers and a day program that consists of minimal talk sessions, karaoke and lunch brought in daily.
I soon learn that in order for my son to participate in these programs, he has to "want" to participate. Kind of a catch 22 that I had no category for..."if he doesn't realize he is ill, if his brain is not working right and he needs time to heal...I mean, how can he "want" to participate?"
The dilemma wears on and we go back and forth with the group home management over the course of the next several months.
Their side: "If he won't participate, then we need to look for another level of care for him"
Our side: "Huh? And what is another level of care?"
Their side: "Maybe a 16 hour care, maybe a boot camp situation"
Our side: "Huh? He has a mental illness...he is not here for disciplinary reasons...and in my husband's words, "Over my dead body"
So as we banter back and forth for weeks and as the pressure mounts from the system a meeting is called.
Thank God we are blind at the time...
My husband and I go to the afore mentioned meeting at our son's clinic. We have no idea what we are walking into, there are so many people there it feels like an inquisition. Our son's doctor, every member of the ACT Team...all 6, a nurse, other case managers, several people we have never seen, our son's group home manager, his manager, her manager and then our son. All seated around 4, 6 ft. tables positioned into a rectangle. We were floored.
The meeting begins with brief introductions, then the "inquisition" starts. We hear from several people how our son is not participating, he is struggling at the home to follow through with chores, etc. ad nauseum. As a mother, I was dumbfounded..."ok, we're here because our son is ill...not a criminal...right?" Our son is overwhelmed by it all and asks to leave. Honestly, I don't blame him...
We listen to a few more case managers as my husband and I fight to control our hearts, but we can no longer contain our emotion...we erupt. Not angrily, but strongly. We hold our ground and we advocate, we fight, we stay together, and we challenge the team..."all of these people and you cannot come up with a way to help him?" We didn't set out to do this, but we dominated the discussion. Finally his doctor speaks up for our son and says, "S. is the sickest patient I have, the sickest in the system. He needs time." My husband and I state together and emphatically, "Oh, we are not giving up on our son. Never." And so the meeting ends.
What we didn't know at the time and later learned, our state's RHBA wanted to kick our son out of the home and place in lower level care or apartment. That was what the meeting was about. And blind parents, new to a brutal system that we were, God gave our son mercy and he was able to stay.
You see, this was our rude introduction into a behavioral health system based on "recovery". Based on nice outcome sheets to show the state. Based on money. One that streams out the most burdensome cases because they "need more time", more support, more work. If our son didn't have us, he would easily be a casualty. Prison, homeless or worse.
I don't mean to state it so gravely, but how do you state truth any other way? I was beginning to wake up from my blind sleep to a living nightmare.
in a way that they do not know,
in paths that they have not known
I will guide them.
I will turn the darkness before them into light,
the rough places into level ground.
These are the things I do,
and I do not forsake them." ~ Isaiah 42:16
I can remember going up for prayer after one of our pastors gave a message from Exodus on the Israelites being ordered to make bricks from straw by Pharoah. So appropriate because that is how I felt. I had been making bricks from straw for a long time and had no idea where the next bit of straw was going to come from.
I also remember when I asked for prayer, I told my pastor that I was asking God to just give me something...anything! But then he replied with wisdom that I will never forget, "Why don't you just follow God blind"?
Somehow, that was enough for me to hear. And blind I was, but that was o.k. Because really, isn't that what faith is? "the evidence of things not seen..."
And so the story resumes from here...
Our son is in a new situation now. A group home with 4 other men. We made it through the holidays somehow and it's the start of a new year. Relationships begin with the group home manager and ourselves, as well as the person who oversees the entire staff and home. A schedule is developed for our son, he is assigned to a day program that is managed by a recovery organization where he attends a few times a week, as well as doctor appointments and group session at his clinic. Only there is a problem: our son does not want to attend or participate.
To recap, our son is recovering from a year of decompensation into psychosis, 4 hospitalizations, 4 severe medication changes. Not to mention being placed in a group home with people he doesn't even know. Add to this that he still does not fully recognize that he is ill and you can safely presume that it is to be expected that he does not readily embrace the idea of "group sessions" with strangers and a day program that consists of minimal talk sessions, karaoke and lunch brought in daily.
I soon learn that in order for my son to participate in these programs, he has to "want" to participate. Kind of a catch 22 that I had no category for..."if he doesn't realize he is ill, if his brain is not working right and he needs time to heal...I mean, how can he "want" to participate?"
The dilemma wears on and we go back and forth with the group home management over the course of the next several months.
Their side: "If he won't participate, then we need to look for another level of care for him"
Our side: "Huh? And what is another level of care?"
Their side: "Maybe a 16 hour care, maybe a boot camp situation"
Our side: "Huh? He has a mental illness...he is not here for disciplinary reasons...and in my husband's words, "Over my dead body"
So as we banter back and forth for weeks and as the pressure mounts from the system a meeting is called.
Thank God we are blind at the time...
My husband and I go to the afore mentioned meeting at our son's clinic. We have no idea what we are walking into, there are so many people there it feels like an inquisition. Our son's doctor, every member of the ACT Team...all 6, a nurse, other case managers, several people we have never seen, our son's group home manager, his manager, her manager and then our son. All seated around 4, 6 ft. tables positioned into a rectangle. We were floored.
The meeting begins with brief introductions, then the "inquisition" starts. We hear from several people how our son is not participating, he is struggling at the home to follow through with chores, etc. ad nauseum. As a mother, I was dumbfounded..."ok, we're here because our son is ill...not a criminal...right?" Our son is overwhelmed by it all and asks to leave. Honestly, I don't blame him...
We listen to a few more case managers as my husband and I fight to control our hearts, but we can no longer contain our emotion...we erupt. Not angrily, but strongly. We hold our ground and we advocate, we fight, we stay together, and we challenge the team..."all of these people and you cannot come up with a way to help him?" We didn't set out to do this, but we dominated the discussion. Finally his doctor speaks up for our son and says, "S. is the sickest patient I have, the sickest in the system. He needs time." My husband and I state together and emphatically, "Oh, we are not giving up on our son. Never." And so the meeting ends.
What we didn't know at the time and later learned, our state's RHBA wanted to kick our son out of the home and place in lower level care or apartment. That was what the meeting was about. And blind parents, new to a brutal system that we were, God gave our son mercy and he was able to stay.
You see, this was our rude introduction into a behavioral health system based on "recovery". Based on nice outcome sheets to show the state. Based on money. One that streams out the most burdensome cases because they "need more time", more support, more work. If our son didn't have us, he would easily be a casualty. Prison, homeless or worse.
I don't mean to state it so gravely, but how do you state truth any other way? I was beginning to wake up from my blind sleep to a living nightmare.
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