Community and disability

I’m Dogkisses and I’m mad!  Mad as in angry, more than a bit peeved, seething, and any other word that fits, besides insane, which I may be that too!

I’m mad that I simply don’t know what to do to help my son who has schizophrenia.   I’ve been working so hard for years and I’m tired!  I’m mad because all my ideas are hard to put into place unless he is on the same boat as I am and apparently, that is not the case, not at all.

Because he isn’t on the same boat as I am then when his illness gets worse, which at times it does, I must rely on psychiatrists.  It’s like eating beans and rice when you know good and well there are plenty other kinds of food, much tastier and much healthier right there for the eating, but you can’t get to them.

I’m mad about a lot of things and have been for a long time.  I don’t know which way to turn.  If I had money I’d get a dog sitter and go to some tropical island and consider things.  But alas, I do not,  so here I am, in my apartment wondering what the hell to do — besides write that is.

I’m  mad that this thing called fibromyalgia and maybe even worse, Chronic Fatigue Syndrome, along with a virus I have bringing with it weakness and  days of nausea, all just keep on keeping on!

It is hard to help my son or anyone, including my dogs when I’m too tired to think!  I simply hate it.

My grandmother told me when I was a little girl that certain words were  not good to use.  Like the word hate.  First of all, she said it was a sin to hate.   She also said it would make you sick and would not do anything to the object of your hatred.

I used to be a new-ager in the 1980’s.  Perhaps I would have given my fibromyalgia and chronic fatigue a mental hug and embraced the great teachings I gain each day as a result of having pain and being exhausted all the time.

Well, it is 2009 and I’m not hugging either damn one!

My grandmother told me not to swear either but I can’t get everything right.  I did once swear in front of her, but only once.  I don’t know what kind of soap she used but believe me it really really tasted bad! It kind of got stuck on my tongue and she stood and watched while I,  “washed my mouth out because I said a dirty word.”

I wish she was alive now so I could go talk to her.  I don’t know what in the world she would say though.  I imagine she would tell me to turn to God.  She would probably tell me that it was out of my hands, all of it, and give it all to God, specifically to Jesus Christ, since she was a Baptist.

I wonder what would she would think about modern psychiatrists!  My grandmother didn’t get angry like I do.  She did know what hard decisions were though.

I just found out recently that she had to seek commitment papers on my father more than once.  He was an alcoholic and would drink until he would get so sick he would be nearly dead.  He would drink, “rubbing alcohol,” when family members poured his beer or liquor down the drain in the kitchen sink, the latter of which as a young child, I blamed on the former.  I thought it much better to leave the liquor because I’d seen what happened when he drank the, “rubbing alcohol,” that was kept in the bathroom.

Back then the only place for him to go to detox was the state’s mental institution.  I also learned he escaped from there, which today is unheard of.  My mom told me that my grandmother helped in his escape.

They had it all planned.  My dad had his suitcase outside of the place, hidden behind some trees.  My grandmother told my mom they were just going to visit him.  My mom was the driver.  The next thing my mom knew after pulling into the parking lot my dad was in the back seat of the car saying, “Hurry up, let’s get out of here.”

So she had to commit him and then help him escape afterward.  Sounds about like what I do.  Escaping looks a lot different these days but basically that is what you do when you get “discharged.”   You have successfully and legally escaped.

I get pretty worked up about commitment papers and trying to save someone from a disease that is treated more like an alien and the patient like a hostage under lock and key.

I am way more than frustrated with what is offered to him as, “treatment,” and a great deal of the time, what is taken away from him.

I’m mad because The Literacy Council in the town he lives in just dumped him.  They have a Basic Skills Development Center, which offers many different educational services and programs.  They set my son up with a tutor only a couple of months ago.

Getting him interested in something enough that he will actually make a commitment is challenging, but he absolutely loved going to see this tutor each week.

He usually sleeps late yet every tutoring day he would call me early, knowing that I rise early to write, to make sure he knew the right time.  He usually walked there because he doesn’t have a car.

I’m too mad to write about it!  I should ask for a letter from them as to why they dumped him.

“He has a problem with memory,” one of the staff members said when she called to tell me they had decided, on their own, without consulting anyone about it, to immediately stop offering my son services.

He has a thought disorder, causing disorganized thinking and YES, HE HAS A PROBLEM WITH HIS MEMORY!  Duh!

Anyone ever heard of the working memory at this institution for education?  Somehow I doubt it.

Didn’t they totally go against The American’s with Disabilities Act?”

I’m mad because I don’t know this law up and down.  I should.

I believe this organization gets money from our government, along with other private sponsors, so why are they immune to dismissing a student due to his or her disability, which is exactly what they told me they did?

I asked two people, one being the executive director, if I was clear about why they stopped serving my son and went as far as to ask if there was something I did not know, some other reason besides his memory problem, that had brought about this decision and she said no.

So I’m mad!

I’m mad at the people who think without knowing that this town’s reputation is in some ways a fairy tale.  It is a place reputable for being a progressive town, with all kinds of different community services and of course the best of the best when it comes to any type of medical care because there are two of the best medical schools in the country here.

Much of it is true but when people who are in positions of power assume a service is available just because well, because they think it is — drives me nuts!

As I was pleading with the Literacy Council not to dump my son telling her how much he loved it, how it stimulated his mind, how it gave him something to think about and talk about, how he was always there and excited to learn — she said, “Well, I’m sure there is a service around here offering…” and I cut her off.

“No.  There is not,” I said firmly.  I had told them when he started receiving their services that I couldn’t believe I hadn’t known about these services before.  We’ve been here six long and hard years and finally, finally he got somebody who would sit with him for an hour and a half!!!

Finally someone was going to spend some time with him.   Finally someone would treat him like a human being instead of a person who what?  A person who you cannot expect to learn?  A person who made A’s and B’s in school, who is intelligent, but because of  a thought disorder, a thinking disorder causing disorganized thinking — hello! — because of this — I nor anyone else should expect him to learn?

Unless of course he takes a fat dose of a mind body altering chemical!  Then, he probably won’t learn, but at least his behavior will be socially acceptable and freaaaaking pleasing!!!

Well, now it is night, which beckons me to relax.

I could trash this post but I think not.  I will instead click Publish.

2 responses to this post.

  1. Posted by abellve on November 22, 2009 at 10:07 PM

    That’s such a huge part of a growing problem — people’s low expectations of people with mental health diagnoses. We say someone’s brain is defective and it makes it that much easier to write them off as unteachable or unintelligent. Since the whole idea of a brain-based mental illness is an unknown, people can look at any trait and dismiss it as part and parcel to the supposed illness. I’m a firm believer that many of the limitations faced by people diagnosed as mentally ill are not an inherent part of their “illness” but social limitations placed on them. Just ask Elyn Saks.
    Maybe if there is nothing offered in your area that meets your needs, you can help to start something. I know you don’t have an unlimited amount of energy to pour into it but maybe by enlisting the help of your core circle of friends and by seeking out people that have faced similar problems, everyone can chip in. Some can share skills and strengths, others space and resources so no one has to individually bear too heavy a burden in the project — or maybe you and that same, possibly untapped prospective group can put that much energy into collectively getting your city to hold up its end of the bargain.



    • Awesome Comment, I was looking over my older posts tonight. I am sad that I didn’t try harder to do something when I wrote this, but noticing the date, I was in a most unfortunate situation personally that took a great toll on my health. If per chance you may get this reply, I hope you are well and I miss your online presence and blog posts a lot.

      In Gratitude,

      PS I have sure learned that psychiatry is not what I thought it was! I have learned that they will do whatever they want to do at any cost. I have learned not to trust the profession and if I must seek their help, I do it with both eyes wide open. I’d like it if ‘we’ had neurologists for matters of the brain and acupuncture or other traditional medicine for healing and recovery.



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