Advocacy Part 1
Something made me pull out an old journal last night that I had tucked away. I began this journal in April 2006 when our son first ran away from home. I continued writing up until May 2007. I didn't take it up again until May 2012. Here is my last journal entry:
May 15, 2012
"Who among you fears the LORD and obeys the voice of his servant?
Let him who walks in darkness and has no light
trust in the name of the LORD and rely on his God." ~ Isaiah 50:10
"Wow. Looking back over this journal. Wow. I first wrote in my letter to S. that "sending him to Montana would be the hardest thing we ever did"...oh. my.
Currently he is in a group home...this is only temporary. The journey continues. I can not write about the past 5 years.
What a difference 5 years of the furnace floor makes, though...good. night."
And write about those 5 years I have not done, until my recent attempt here on my blog (See previous 10 posts).
Let me back up for a moment and tell you how my son came to reside in the group home. A group home I am forever grateful for...(story resumes from here)
It's December of 2011 now. Our son is still at St. Luke's. The Clozaril attempt was unsuccessful and he is now back on his original regime of medications with minor adjustments. Still no where near his stability level of the first year on court ordered treatment. It's the best we can hope for with the push to get him out of the hospital. And the push comes, as is always the case, a hospital case manager has been assigned to our son for discharge. I am able to speak with the psychiatrist and at least my request (begging) for a CAT scan and quick neuro psych (no where near the level of evaluation truly needed) is complete showing nothing significant.
But this time it is different. My husband and I tell them he cannot come home. We have to find him an interim level of care. I knew through speaking with other parents that there were group home situations out there, though they always seemed elusive. His regular case manager hurriedly finds him an apartment type situation. One he would share with another man and a part time staff person would be available similar to an apartment manager. My husband and I agree that this would not be acceptable nor beneficial to our son. He needed 24 hour supportive staff. We would not let it happen and appealed.
I don't remember alot of details, but I do remember somewhere in this time a very heated conference call with the hospital case manager and psychiatrist and I think a nurse. It's hard for me to record some of these situations here without it sounding like I am bitter or spiteful. But I record not for myself, but for my hearers...
Now not every person I've met is like this, I don't want to paint such a broad brush, yet having set that...there is a general attitude towards family members of loved ones with a serious mental illness. It's almost a "we know better than you mom" condescension. I'm sorry, there's no other way to say it...but in a nutshell, "mom and dad, it's your fault". This is why NAMI was founded. By two moms who got tired of taking the heat and the "professionals" in charge who did not treat their kids as if they had an illness. Blame Freud, blame these psychotic illnesses being placed in the "behavioral" category, whatever you will...truth is, families are in for the fight of their lives when it comes to getting actual treatment and care.
So back to the heated conference call...this is where it all came together for me. They were trying to pressure us to release our son to an apartment. The case manager kept referring to me as "mom" in a very condescending way..."mom, your son is trying to manipulate you...", "mom, your son...blah, blah...we know better..." more blah, and then some more blah, and then I snapped. I asked her to refer to me by my first name, Deborah, then the past five years just spilled out over the phone...I don't remember what I said but I wouldn't let them get a word in...I knew I had to fight for my son, I know my son better than anyone else and I wasn't going to settle for a situation that set him back further. At the end of the conversation I stated my desire for my son: find him a group home and find it near my husband and mine's home. Period.
That's when I knew. I would be doing this the rest of my life for my son. I was his advocate.
To the case manager's credit, she called me back the next day...almost in tears and apologized. Several days later a group home was found, it was in the proximity to our home that was agreeable and miracle of all miracles...it turned out to be right next door to a friend of mine's home.
I remember a conversation with my pastor after this. I spoke of how difficult it felt having to fight this way...almost "un~Christ" like if you will...yet in my gut I knew I had to get tough...
Then my pastor cared for my soul so kindly, he spoke of how no one in this system could love my son like my husband and I. In the system he is a number, we have to fight for him. To be his advocate.
He reminded me of my advocate, Jesus. My savior who died to save my soul. I began to see what a privilege and honor it was to advocate for my son...to know how much I love my own son. To have a taste of the love, in a small way, that Christ has for me. My advocate.
Balm for this weary mom's soul. Purpose in the suffering...there's always purpose, but it was nice to see it this evening as I spoke to my pastor and prepared for the next phase in our son's care...
"God, you are good....and always do good. All for my good (and my son's, my husband's, my children...) and all for your glory. My sweet and precious advocate...thank you Savior!"
May 15, 2012
"Who among you fears the LORD and obeys the voice of his servant?
Let him who walks in darkness and has no light
trust in the name of the LORD and rely on his God." ~ Isaiah 50:10
"Wow. Looking back over this journal. Wow. I first wrote in my letter to S. that "sending him to Montana would be the hardest thing we ever did"...oh. my.
Currently he is in a group home...this is only temporary. The journey continues. I can not write about the past 5 years.
What a difference 5 years of the furnace floor makes, though...good. night."
Let me back up for a moment and tell you how my son came to reside in the group home. A group home I am forever grateful for...(story resumes from here)
It's December of 2011 now. Our son is still at St. Luke's. The Clozaril attempt was unsuccessful and he is now back on his original regime of medications with minor adjustments. Still no where near his stability level of the first year on court ordered treatment. It's the best we can hope for with the push to get him out of the hospital. And the push comes, as is always the case, a hospital case manager has been assigned to our son for discharge. I am able to speak with the psychiatrist and at least my request (begging) for a CAT scan and quick neuro psych (no where near the level of evaluation truly needed) is complete showing nothing significant.
But this time it is different. My husband and I tell them he cannot come home. We have to find him an interim level of care. I knew through speaking with other parents that there were group home situations out there, though they always seemed elusive. His regular case manager hurriedly finds him an apartment type situation. One he would share with another man and a part time staff person would be available similar to an apartment manager. My husband and I agree that this would not be acceptable nor beneficial to our son. He needed 24 hour supportive staff. We would not let it happen and appealed.
I don't remember alot of details, but I do remember somewhere in this time a very heated conference call with the hospital case manager and psychiatrist and I think a nurse. It's hard for me to record some of these situations here without it sounding like I am bitter or spiteful. But I record not for myself, but for my hearers...
Now not every person I've met is like this, I don't want to paint such a broad brush, yet having set that...there is a general attitude towards family members of loved ones with a serious mental illness. It's almost a "we know better than you mom" condescension. I'm sorry, there's no other way to say it...but in a nutshell, "mom and dad, it's your fault". This is why NAMI was founded. By two moms who got tired of taking the heat and the "professionals" in charge who did not treat their kids as if they had an illness. Blame Freud, blame these psychotic illnesses being placed in the "behavioral" category, whatever you will...truth is, families are in for the fight of their lives when it comes to getting actual treatment and care.
So back to the heated conference call...this is where it all came together for me. They were trying to pressure us to release our son to an apartment. The case manager kept referring to me as "mom" in a very condescending way..."mom, your son is trying to manipulate you...", "mom, your son...blah, blah...we know better..." more blah, and then some more blah, and then I snapped. I asked her to refer to me by my first name, Deborah, then the past five years just spilled out over the phone...I don't remember what I said but I wouldn't let them get a word in...I knew I had to fight for my son, I know my son better than anyone else and I wasn't going to settle for a situation that set him back further. At the end of the conversation I stated my desire for my son: find him a group home and find it near my husband and mine's home. Period.
That's when I knew. I would be doing this the rest of my life for my son. I was his advocate.
To the case manager's credit, she called me back the next day...almost in tears and apologized. Several days later a group home was found, it was in the proximity to our home that was agreeable and miracle of all miracles...it turned out to be right next door to a friend of mine's home.
I remember a conversation with my pastor after this. I spoke of how difficult it felt having to fight this way...almost "un~Christ" like if you will...yet in my gut I knew I had to get tough...
Then my pastor cared for my soul so kindly, he spoke of how no one in this system could love my son like my husband and I. In the system he is a number, we have to fight for him. To be his advocate.
He reminded me of my advocate, Jesus. My savior who died to save my soul. I began to see what a privilege and honor it was to advocate for my son...to know how much I love my own son. To have a taste of the love, in a small way, that Christ has for me. My advocate.
Balm for this weary mom's soul. Purpose in the suffering...there's always purpose, but it was nice to see it this evening as I spoke to my pastor and prepared for the next phase in our son's care...
"God, you are good....and always do good. All for my good (and my son's, my husband's, my children...) and all for your glory. My sweet and precious advocate...thank you Savior!"
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