When you are dealing with someone with MI on a daily basis, you become a pretty good judge of that person. In the last 8 years since my DD#2 was dxed with a MI, one thing I have learned is what to look for, verbal and non verbal cues of readiness or changes in her cycle. I can tell when we are heading for a rage/breakdown within a few days. I can tell when she truly is doing good and not just doing and saying what she has to in order to be released. I have also learned to listen to what her fears and thoughts are, not just listen to the words she speaks but the emotions behind those words. I no longer just look at what professionals reports say or program notes but I take it all as a package. Just like many things, you can not just look as one aspect of something and come up with a decision that works, you need to look at all aspects.
Most agencies that are out there rely on parents or loved ones for their input, their feelings and knowledge of the person in need to gain that "full picture" because they only have reports to go on. Unfortunately when dealing with the agencies, they also have guidelines they have to go on. People who have never met your loved ones are the one's who write those guidelines. Those same guidelines are reviewed every few years as an "umbrella" that their case workers use for all their clients. These guidelines are further not subject to be available to the family's who need them. We do not have a say in whether they are fair or reasonable. We do not have a voice to battle those who make the guidelines or to those who make the final say (the district offices).
So why then is the purpose for these agencies? You have to fight to get the services that your loved one needs. If you become one of the lucky ones to get the services, you have to fight to get the correct services that would help your loved one. After almost 3 years of working with our local DMH services and knowing personally what my DD#2 needed, we finally got her placement into a school that is phenomenal and there is once again hope insight.
The idea that my DD#2 might actually be able to have a productive life and be able to "live" with her MI, has never been more evident. These thoughts are not long lived however. Not by fault of my DD#2 but by the agency that is there to support her. My DD#2's DMH worker has been talking about transitioning her from the school setting she has been living at for the last 13 months and back into our home full time. Granted I love my DD#2 and I can't wait for her to be able to live at home again full time, but I have to honestly say, she is not ready for this transition, no yet. I can see that she is still in need of around the clock care for her to feel safe. Safe from herself and those who she perceives as a danger to her (during her unstable times).
Just because there are sustainable gains on my DD#2 behaviors does not mean that she is ready to leave the environment that has made it possible to maintain that stability. At least half or not more of the issues with many who suffer from MI, their perception plays a HUGE part in their own stability. If they feel they are not in a safe place, then they will "crash and burn". The reason many people are dxed with MI is because they can not recognize the difference between actual things and perceived things. Their mind can not process that type of reasoning, thus a dx of MI. This also does not mean they can never be able to do this, it just means that when the neurons in the brain send messages, there is a breakdown or "mix up" in the synapse which causes the MI. Its like trying to start a fire with a flint and a rock. Sometimes you get a spark big enough to light the kindling and sometimes you don't. Does that mean it is impossible to start a fire with a flint and rock? No, it just means you need to practice and make repeated attempts to do it right.
The only way to have long lasting stability is not to change a situation that is working after a short time period, but it is to keep it in place so that they can "practice" over and over again. A longer time of stabile support is the key to longer stability outside of that support. Also, a gradual change over time will also bolster the self esteem of the MI person. Show them that they CAN do this on their own and to be able to recognize signs of trouble and be able to reach for that extra support when needed.
Not everyone who has a MI are the same. No two people are the exact same so why would every MI person be the same. If that is the case, then why are the clients treated the same? Why do they have to follow a certain guideline? Something needs to change in our mental health system. Changes that our loved ones can benefit from and get the care they need and for how long they need it. Until then, I will not stop fighting for my DD.
Most agencies that are out there rely on parents or loved ones for their input, their feelings and knowledge of the person in need to gain that "full picture" because they only have reports to go on. Unfortunately when dealing with the agencies, they also have guidelines they have to go on. People who have never met your loved ones are the one's who write those guidelines. Those same guidelines are reviewed every few years as an "umbrella" that their case workers use for all their clients. These guidelines are further not subject to be available to the family's who need them. We do not have a say in whether they are fair or reasonable. We do not have a voice to battle those who make the guidelines or to those who make the final say (the district offices).
So why then is the purpose for these agencies? You have to fight to get the services that your loved one needs. If you become one of the lucky ones to get the services, you have to fight to get the correct services that would help your loved one. After almost 3 years of working with our local DMH services and knowing personally what my DD#2 needed, we finally got her placement into a school that is phenomenal and there is once again hope insight.
The idea that my DD#2 might actually be able to have a productive life and be able to "live" with her MI, has never been more evident. These thoughts are not long lived however. Not by fault of my DD#2 but by the agency that is there to support her. My DD#2's DMH worker has been talking about transitioning her from the school setting she has been living at for the last 13 months and back into our home full time. Granted I love my DD#2 and I can't wait for her to be able to live at home again full time, but I have to honestly say, she is not ready for this transition, no yet. I can see that she is still in need of around the clock care for her to feel safe. Safe from herself and those who she perceives as a danger to her (during her unstable times).
Just because there are sustainable gains on my DD#2 behaviors does not mean that she is ready to leave the environment that has made it possible to maintain that stability. At least half or not more of the issues with many who suffer from MI, their perception plays a HUGE part in their own stability. If they feel they are not in a safe place, then they will "crash and burn". The reason many people are dxed with MI is because they can not recognize the difference between actual things and perceived things. Their mind can not process that type of reasoning, thus a dx of MI. This also does not mean they can never be able to do this, it just means that when the neurons in the brain send messages, there is a breakdown or "mix up" in the synapse which causes the MI. Its like trying to start a fire with a flint and a rock. Sometimes you get a spark big enough to light the kindling and sometimes you don't. Does that mean it is impossible to start a fire with a flint and rock? No, it just means you need to practice and make repeated attempts to do it right.
The only way to have long lasting stability is not to change a situation that is working after a short time period, but it is to keep it in place so that they can "practice" over and over again. A longer time of stabile support is the key to longer stability outside of that support. Also, a gradual change over time will also bolster the self esteem of the MI person. Show them that they CAN do this on their own and to be able to recognize signs of trouble and be able to reach for that extra support when needed.
Not everyone who has a MI are the same. No two people are the exact same so why would every MI person be the same. If that is the case, then why are the clients treated the same? Why do they have to follow a certain guideline? Something needs to change in our mental health system. Changes that our loved ones can benefit from and get the care they need and for how long they need it. Until then, I will not stop fighting for my DD.
