I have written in my blogs about the stigma of mental illness as we have been on this journey and I have written about one of my ER visits with no beds available so my son sat in the hallway on a gurney for 26 hours. I have written about the casserole phenomenon where churches and friends bring casseroles for the sick, broken body parts, cancer, heart disease, etc but nobody comes for mental illness or autism. While my son has been in and out of the mental hospitals in our local area and I have sat for hours, even days in the ER waiting for him to get a psych bed, only one family takes my daughter in and nobody else calls, brings food, offers to give her rides or even a hug. My own church at the time basically ignored my cries for help as my questions to God swirled in my sleepless insanity and my physical health held on like a thread.
I have friends who care for a sick or elderly loved one and think it is comparable but unless that sick or elderly loved one might kill you in your sleep or themselves, you have no idea. That statement to me is as stupid as a woman saying she understands what it is like to be a single parent when her husband travelled for a week away from the home...really??? These statements are made with the best of intentions and slightest effort to reach out and understand. I give them credit for what they are worth.
One of the points I want to follow up on is a furtherance to the interviews here. At one point the producers said that they have young children who freak out and "tantrum" but this goes beyond that. It is truly hard for people to understand how this goes beyond a "tantrum". A regular tantrum can be dealt with rationally, the kid will come around when rationality hits them. When you need to take something away or behavior modification techniques are successful then you have a kid that can be dealt with. The mentally ill are not rational. Seriously, this is huge. Sometimes you can crack in to the crazy and get them to calm down or use a different part of their brain which can reduce the neurological storm but there are many times that this can not be reached. I tell my daughter, it is like talking to a meth addict when they are on meth. Don't try to rationalize, parent, manipulate, behaviorally modify or reason with the mentally ill having a "flare up" or unbalanced moment. Most of the time it is finding a coping strategy to wait it out with the hope of some sort of intervening medication to kick in, if you can get them to take it.
The interview speaks of the holes in the wall, the physical damage done by the mentally ill. Yep, that's all real. I know folks who have had "rough" teens that have similar damage. My family and I were asked to leave our last place we rented due to my son's behavior and the damage he caused. His irrational and "quirky" behaviors, the holes through walls and doors, windows broken, etc are unattractive to most and sure makes a gal hard pressed to take pride in her home and family. We live in shame just based on our physical environment sometimes. I certainly don't invite folks over and always feel embarrassed if someone "drops by" but I have to let it go and use my great excuse of being a part time law student to make me feel better. The truth is, if I were not in law school I'd probably be driven crazy by the condition of my home...I'm a clean and organized person who used to love to have folks over and took great pride in my home...I had to let that go a while ago. I am humble in my coping strategy for sanity.
My son's latest break through of his meds as his bipolar worsens left me with a psych doc appointment like a punch in the gut...he's basically doing no academics anymore, he burrows in his room and getting him out to interact with the world requires greater force then a crow bar. The psych doc once again told me to lay off, "he is not normal, he will never be normal, he will not have a normal life and if he is happy then leave him alone.: For 15 years of autism training I was taught to help him fit in to the world, into normal. Now I have to let him rot, stew in his stink in order to alleviate stress. A happy brain degenerates slower then a stressed brain and slowing down the degeneration of mental illness and the psychotic breaks that follow does less damage then him not learning geometry or having "appropriate" social interactions.
Seems so weird and hard to calibrate to and understand. The psych doc held her arms up and spread her hands as wide as they could go and told me, "his autism and mental illness is HUGE to handle". I was not caffeinated enough at the moment to keep both hands in scope...I'm not sure the hand gesture demonstration was completely necessary...but maybe...I'm kind of thick. Maybe she caught a mental illness autistic fish "THIS BIG"! I'm not sure what my role is here...keeping him happy? He barely participates in chores, life, anything...do I allow that? If I am normal, how do I speak the language of "not normal". Isn't that like asking a parent to suddenly learn french because there child can no longer speak english?
I know that an autism service dog will help drag him back in to the world but the wait is long and the journey a rough one to raise money. Try raising 12,500 while working, doing law school, managing crazy town with autism and all the psych, therapy, doc and school appointments that go along with it (not to mention the large amount of trees sacrificed to document this journey with all of these services and forces of "care"). My son needs 24 hour supervision and is only in school 2 days a week because he can not handle any more. Then add in the sib of it all and her challenges and break downs...and she has plenty, believe me. God has humbled me to my knees so many times they are bruised but I don't stop praying. We have lost friends and family members along the way but those that step up are valued even more. I'm not sure where to look for hope so I just hold my hands open wide.
I make my own casseroles and have stopped attending my old church. Nobody really can understand unless they have lived it. Nobody could possibly understand what it is to watch a child that has grown up the same age as your child thriving and excelling and smiling with pride for that child and a crushed heart for your own wondering why oh why God would torture your child/family and bless another. I white knuckle faith and speak out as often as I am able to help break down the stigma and the fear and to help educate anyone who gives a damn. I stay on vigilant suicide watch and ready to kill the buzz of mania at any given moment. I manage sensory overload and "stemming" teen and try to find every opportunity to educate his rational moments with social appropriate behavior and care. I hug the sibling and try with all my heart to give her confidence in my strength and int he world as she walks on shaky ground each day. I am not victim to my son's "temper tantrums" but an advocate for my son's autism and mental illness. I am advocate for my families right to be a apart of the world and redefine "normal". This is my two cents added on to the 60 Minutes story from last night.
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