Friday, September 12, 2014

I may have lost the battle but I haven't lost the war.

This is something that I'm having to remind myself. Thanx to an outpouring of support from parents who have been where I am and from people who are diagnosed and been where my son is and understand what I have been trying to accomplish... Their words of support and wisdom have helped me tremendously, perhaps more then I can truly express.

Since my son was diagnosed in 2011 and especially since he came to live with me in April of 2013, I have quit literally immersed myself into the world of schizophrenia. I have researched to the best of my ability the science behind what is happening in my son's brain. I have watched videos, so many videos. One by a Professor at Stanford University who sums up what I have researched in an easy to understand way. I have watched videos from The LEAP Institute about mental illness and anosognosia. 40-50% of people diagnosed with schizophrenia have anosognosia. Anosognosia looks like denial but is part of the disease itself. It does not allow the person to see that they are sick. I have researched medications and tried to understand dopamine antagonist and so many other terms that are almost beyond my comprehension BUT I understand enough to know what my son's brain needs. Not what schizophrenia and addiction wants. His thoughts, feelings, actions and reactions are being controlled by things that he cannot see or understand. That's where I come in! To advocate not for what my son thinks he wants BUT for what he needs.

Everyday I'm communicating with stable and recovering diagnosed who have been where my son is. Who's family members have advocated as I am trying to do to give them what is best for them. Now that they are stable and recovering they can see that boundaries and yes even a little tough love has helped to give them their lives back. Family members who out of love said enough is enough. We are not the problem and it's time! Time to take responsibility not only for their lives but for managing a disease that needs to be managed.

I have tried to talk to psychiatrist about the science of schizophrenia and guess what? They don't seem to have much knowledge. It's not their job to know about enlarged ventricles or pre-frontal cortex, less grey/white matter or miss-firing neurotransmitters. No amount of unconditional love can fix these. Overloading him on the wrong medications can't fix this. It's their job to prescribe medications based on what drug companies say they are supposed to do. They also prescribe based on what the patient tells them. Patients like my son who knows how to manipulate the system to give him what he wants. My son would still be over medicated and on the wrong medications if it wasn't for me researching and advocating for what is best for him. Getting him off of benzodiazepines, anything that ends in 'pam' was the first and best then I could have done for him. I know that the medications that he needs are the ones that help to regulate dopamine in his brain and he doesn't need to be over-medicated with them. I know that he can't handle ADHD stimulants, they trigger psychosis. Why because they are amphetamines. Might as well give him crystal meth/speed. That doesn't mean that he doesn't need help with ADHD symptoms because he does. I wonder who will advocate the right medications for this? I wonder who will advocate the right doses of the right medications? Instead of listening to a psychiatrist that in my opinion dropped the ball where my son is concerned a long time ago. A psychiatrist, that now that I have more experience and knowledge, didn't do my son any good. I don't blame him. He is human after-all. My son's current, soon to be no more, psychiatrist. Is a good psychiatrist, in my opinion. He worked with my son. He listened to me and my son. Most importantly he tried to give my son what he needed not what my son thought he needed. A very big distinction. He understood me when I talked about neurotransmitters...

I really wish the people involved could step back for just a moment and try to see the bigger picture. If they could only see what I see. I do see my son. All of him! Not just the parts that I want to see. I don't love him any less for doing so. In fact I think it makes my love all the more significant. Steps were being put into place that would give my son the tools that he needs to be the man that I know that he can be. Support was in place that he has been turning his back on because he can't see past his own mentality. It was a bump in the road that was leading to a success that would help him to gain the independence that he craves in an environment that understood his needs. He can't see his own limitations. He doesn't know that he needs the support that I was trying to give him.

It's hard to come to terms with what is happening. It's hard to let go and not do everything in my power to stop this. I know people's hearts are in the right place. If only they could see that so is mine. I have not done anything lightly. I have not made any decision that was not geared towards my son's stability and future. I see past his temper tantrums and manipulations. If only I was given the chance to see it through. Just a little bit of trust that as his MOTHER, armed not only with my love for him but also with the knowledge and experience of so many in my and his situation, that given the chance I was providing me son with what he needed. Now I'm letting him walk into a world with little understanding of schizophrenia.

A couple of people's comments hit home for me. It was to hand this over to my higher power. My higher power is my mother, Donna, who is in heaven and I know how much she loved my son. When things are tough for me, it's her that I pray to for the strength that I need because I know if anyone has God's ear it is her. I know that she is in my son's heart too because he still remembers her and talks of her sometimes. So mom, or Donna as my son calls you... I give you my son. Please take care of him until he is back with me again.

Thank you to all the nameless people who have supported me and my decisions. Who have lived with this disease and despite current circumstance have told me what an awesome mom I am. I needed to hear it.


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