July 30, 2009

Support That is Less Than Supportive

No, this isn't about the latest undergarment that promises to overcome the ravages of gravity and age (boy, do I need one of THOSE).

I'm talking about NAMI (National Alliance for Mental Illness). I sought out one of their support groups during a difficult time with The Boy. There was a meeting close to my home in NY.

Instead of coming home feeling like I had found a life preserver while we were adrift on the sea of involuntary hospitalization, medications and the justice system, I felt more depressed and hopeless than when I had walked in their door.

The folks there were nice enough, that wasn't the problem. They were empathetic and welcoming; as they sat in a roughly formed circle of chairs, they all had that weary, beaten down look that I recognized each day in my bathroom mirror. We were kindred spirits, this group of parents with mentally ill children.

As I had a great need to "share", I volunteered to go first when describing the tale of The Boy. I told of his diagnosis of bipolar disorder at six years of age, and the struggle/adventure we'd been on regarding school, behavior, psychiatrists, hospitals and the never-ending adjustment of dosages of medication. I told of his arrest at school, of his lithium toxicity at age nine, of his involuntary hospitalization at a regional state mental facility. I spilled my guts.

I saw several nods of recognition among the other participants. Some had that faraway look in their eyes (I imagined they were re-living some of their own struggles with their children). When I finished my recitation of what I'd call my condensed version of Hell, there was complete silence.

These parents, on some level, could not relate to me. All of their children came to their illnesses as young adults - they had had normal childhoods, and provided their parents with years of joy and lots of positive memories before slipping off into the abyss of insanity. They were the parents of ADULT bipolars, schizophrenics, depressives or sociopaths. Not one person in the room had a young, mentally ill child. They could not wrap their heads around having a 3rd grader who wrote spelling sentences about ways to commit suicide, or tried to hang himself with a Nintendo DS car charger.

After a very pregnant pause, the informal "leader" of the group invited other parents to share their stories - and share they did.

I heard about a son in his 30s who ricocheted between hospitals and prison.

I heard the story a daughter who had been wonderful until her sophomore year in college - who now is a non-medicated, homeless 28 year old paranoid schizophrenic who periodically breaks into the family home to get food and money, shunning any and all suggested psychiatric interventions.

I heard of a 30 year old man who now lives in the small shed behind his parents' home, ignoring all pleas to find gainful employment, too paranoid to venture out in the world.

Each parent in the room told a story of such sadness and despair that it was hard to bear the telling of it.

These parents looked at me with pity in their eyes when I told my story - they no doubt couldn't fathom what our future would be - a very long future at that. I'm sure they were counting up the years we have ahead of us, and being a bit grateful that their children were already well into adulthood.

I felt horrified that these stories they told were going to be OUR story. That adult mental illness is just as hard as pediatric mental illness (but with the very real possibility of incarceration instead of hospitalization); that there is NO END to the suffering for my son - that there is little hope that his life could be anything more than awful, let alone happy and productive.

I cried as I drove home that evening...and I never went back to another meeting.

Maybe I prefer to think that my son will be a success story. I certainly can't think that his future (and a future that will not include me his whole life, as I am an older parent) will be like the children I heard about.

I have a much more practical approach to The Boy's future as an adult - my focus is to help get him through school, and teach him about how important it is that he remain in treatment even when he grows up and moves out.

I still see promise in him - and no "support" group is going to take that away from me.

A note: I usually participate in Mama Kat's Writer's Workshop on Thursday. This week's prompts just didn't speak to me at.all. I got nothin'. If you want to read all of the witty and outrageous posts there, click here. Hopefully, I'll return to the fun next week.

10 comments:

  1. You got your hands and your heart full. I can't really relate to this but have done some work in this field. I used to be the secretary for a gal who was the hospitalization referee for the county here. Someone who dealt with vol. and invol. commitals. My heart goes out to you. People have no idea what you deal with on a 24/7 basis. Support group for your son? He sure is a handsome young man and if I learned anything from this, I learned these kids don't want to feel this way. They are so tormented, beaten down themselves. They just want to be like what they call "normal kids". No one can understand the exhaustion of having a mentally ill child until they have walked in your shoes. I honestly can just pray for you and hope that you are led to the right kind of support group where you can maybe get some support.

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  2. Lori,
    Thanks for the kind words. We're having a great year here in Missouri - much better than NY.

    He's a great guy - he just needs a lot of attention (and loads of medication!).

    I will probably seek out the local NAMI folks again, if we hit a rough patch.

    We've already got him in a great school situation and have a wonderful psychiatrist and therapist, and that really helps.

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  3. I also sit here in a "pregnant pause". BUT, "The Boy" will be a success for he has a successful beacon to follow.

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  4. Eh. This reminds me of the miscarriage support group I was a part of, so so briefly. It just didn't last because it made me sadder than if I were just on my own.

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  5. I am sending much love to you and the Boy. You have your hands full and I just can't imagine. I don't know if it will help but have you read the book by Dr. Hyman, The Ulramind Solution? It is worth a try you might even want to look him up at his practice. Just a suggestion and I don't know if it will help but everything he states makes total sense and he seems to help so many.

    Thanks for stopping by. I hope you have a wonderful day.

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  6. Your story will help others one day if it doesn't already. Just because that meeting was all adult children doesn't mean you won't help someone else with a young child. Stay strong and your belief in your son will guide him through. Wonderfully written.

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  7. June...great post and obviously from the heart. It sounds like you are doing a great job as a parent and your love for "The Boy" is so evident and I am sure it is evident to him as well...even though some times he may not show it.

    One more thing...just a heads up...for some reason your blog is loading extremely slow today. I don't think it is my computer because yours has been the only one with a delay. Took about 30 to 45 seconds to load.

    Dan

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  8. Dan,
    You're right - it took forever to load. I notice that it was stuck on countdown.org - I set up three countdown timers yesterday.

    Maybe they need to go...sigh.

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  9. Your writing is very relatable, I think you did a good job with a difficult subject. I enjoyed your writerly voice.

    Have you checked out the online support groups at bpkids.org? I'm CABF's webmaster. If you haven't checked them out, maybe you'll find it more helpful. Disclaimer: I'm CABF's webmaster! :-) I hope my dropping by isn't creepy or anything. You popped up on my technorati list.

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  10. I've been to bpkids.org many times, though I am not a paying member.

    I joined Technoati just last night - that stuff really works!

    Thank you for the kind words.

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Thanks for stopping by. I love your comments...I get all warm inside just reading them!