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Monday, December 17, 2012

School's out for ever...

Having graduated from high school at sixteen, you would think that a college degree would have been finished by age twenty-one.  If I had been a rational and more mature sixteen year old, that would have been the case.  It was not.

I made the mistake of listening to friends.  I made the adolescent mistake of trying to get as far away from my mother as I possibly could.  And I was not mature enough for a big move to a place I did not understand or care for.  I screwed up.

Then, when a few years had gone by, at the urging of a very nice man who was a patient of the doctor for whom I worked, I went back to college part time while working full time. I was still young and strong and full of energy.  I did that for eight or nine years.  But I got married.  Another mistake.

Well, at long last, I have a Bachelor's Degree.  It only took me forty years.  And considering all the credits I lost by transferring and making myself obsolete after so much time, I may have the only B.A. that required one hundred and fifty credits.  (There is no such thing as an English Literature degree anymore, that was for the dinosaurs.)  But, nevertheless, I did it.  That makes me the only child of my parents to finish college.  It also, if they ever hear about it, will irritate my ex-in-laws.  Good.  And it means that when I die, my death certificate will indicate that I have a degree.  Whew!  I was worried about that.....

It means I accomplished something and I did it without being given any favors. Don't get me wrong there.  I mean that no family member paid my way.  I was extremely grateful for the couple of scholarships I got many years ago and for the fact that the institution I work for contributed to my tuition costs.  Still, I earned my degree in every sense of the word.  No free ride for me.

So you know what my first reaction was when I realized I was completely done?  Was I happy?  Was I relieved?  I cried.  I cried for all the lost time, all the lost opportunities, all the could haves and would haves and should haves.  One big cry.  I guess that was simmering for a while, like a few decades or so.  I'm past that now and felt better this morning.  I felt.......worthy.   It takes a little getting used to, but it's pretty good.

Thursday, January 19, 2012

Spread your broken wings and learn to fly....

I am currently reading a book titled "Slave in the White House" by Elizabeth Dowling Taylor.  To a person in the 21st Century it is shocking. Somehow my elementary and high school educators failed to teach us much more than a cursory look at "slave trade" and the Civil War.  There is a huge hole in my education and so I assume that same chasm exists for most American students and may be far worse than my own.  I grew up in New York, the Northeast, the Union side.

This book chronicles the life of a man named Paul Jennings - half African American (his mother was a slave) and half English. ???? There is no record and hence no explanation of who "Jennings" may have been. But any offspring of a slave "belonged" to the owners of the mother. I feel strange even typing out that word "owner" in reference to a person. It's abominable. Paul was unusual because he could read and write.  He must have been extraordinarily astute since it appears he just absorbed the knowledge from being around the white owners kids when they were instructed.  Oh, by the way, the owners were James and Dolley Madison. Mr. Madison was the fourth President of the United States from 1809 to 1817.  One of the "Founding Fathers." He spoke a lot about the equality of man, expounded upon the evils of slavery.  Yet he had them.

I often wondered about the lack of last names for the emancipated people but according to this book, like Jennings, they had last names, they just weren't really allowed to use them. There were no birth certificates, no formal papers to preserve their names, no marriage license since their marriages were not "legal" or officially recognized. The owners also made a habit of using a diminutive or nick-name when possible for their first names.  This is a subtle way to show lack of respect, remove dignity and ensure that a person knows where they stand in the hierarchy.

Madison had a plan for emancipation.  He seemed to know that the day would come eventually when Americans would have to give up their human property. His plan was to send them to Africa. I don't know yet if Africa was consulted on this plan, I am only one third of the way through the book.

There was a news article today about a teacher in Georgia.  The teacher was outraged by clear and blatant racist questions on a test for young students. The teacher resigned because math problems were posed as such: "if eight slaves pick them (56 oranges) equally then how many...?" Slaves???? My stomach churns reading about what went on in the early 1800's.  What kind of people live in Atlanta today? Four teachers are being "investigated." How do you come to adulthood, get a college degree and become a teacher with a head full of hate?

Paul Jennings gained his freedom through a loan from Daniel Webster.  But the question remains,will we ever be free of this kind of ignorance?

Tuesday, January 17, 2012

I didn't sleep at all last night....

No one in this household did.  Today the college kids were allowed to move back into the dorms.  Consequently, my daughter was up just about all night.  Transition. Transitioning into change.  She was up and down the stairs countless times.  She had tea or coffee because I could hear the Keurig going.  Lights were on downstairs and up, leaking into our bedroom under the doorjamb.  My poor husband had to get up at five a.m. to go to work. As if having a grown step-daughter with autism wasn't enough, just as he was drifting off (I could tell by the rhythm of his breathing) the damned deaf ancient cat came into the room, jumped on the bed and proceeded to start heaving. (Woka, woka, woka) Since I was WIDE awake I was able to get him onto the floor before he tossed his cookies in the bed.

"I didn't sleep last night!"
"Yes, we know, we didn't either. We could hear you."

Any response? Nope. Time and time again she has been told that this keeps us up and she either just doesn't get it (possible) or just doesn't care (also possible) or both.  I am always afraid of instigating a huge shouting match so I let a lot go. I let this go.  At least we will sleep tonight.

It was cold and rainy here today and because of my recent surgery, other than driving her to campus, I was totally useless as far as helping her move all her stuff back in.  Others were there, some with parents, some with friends. I admit it makes me sad to see them because I envy them and I was secretly relieved that I could not help and she did not complain. She also did not attempt to hug goodbye. Nor did I.  I don't force those moments anymore as I used to when she was younger.  She is no child anymore and it is just too awkward. Just a blank eyed stare was all I got. Perhaps that is why, all the way home, I could feel myself fighting back tears as I rode through the gloomy raindrops, feeling cheated somehow. 

Wednesday, January 4, 2012

I thought I knew you. What did I know?

We were watching Rita Rudner the other night - it was old, but still funny. Part of her act concerned how she used to always find the wrong man and then when they broke up how she had to tell people how horrible these guys were. She said they should come with warning labels for the next woman. I laughed, but then I thought, hmmmmmm. Perhaps they should.

So, to the next wife I say that I don't believe a leopard can change its spots.  In other words, the beast will show itself one day.

What am I talking about? He's charming, he's funny, he's intelligent and amuzing! Wait. I remember the charm, I recall that I used to like that he made me laugh.  Until there were serious things to deal with and everything was just a big, fat joke only it wasn't funny anymore. And the charm faded when we lost our friends. All those people who used to casually gather in our house or backyard and maybe stay for dinner or hang out and listen to music and talk. They all went away. They wouldn't even come over if I asked and I did and I was embarrassed. After all was said and done they told me he gave them "the creeps."

And then there are the in-laws. The overbearing, meddling, manipulating in-laws. Maybe you like them. Maybe. After all, they too are always smiling, always laughing, having FUN! Until you don't even know what your own name is anymore. Until you realize they want to run every aspect of your life. Their way or no way. Roll out the red carpet, throw the rose petals, here they come! One day you will tire of the phony hoopla and the fake togetherness and realize that there is you and them.  You are not one of them. That will be clear. And turn off those dollar signs in your eyes and forget about the money. It's not for you.

Back to the boy-the fifty-something year old boy. The things you probably don't know, the things he may be afraid to tell you. And, of course, the rest of the family honors the code of silence, even the child he abused. She is afraid of him. Still. And she is also probably afraid of all the rage that she doesn't express, so she keeps silent. She suffers through her visits. I get to hear all about it afterwards.

The child he abused had a neurological disability. It was a difficult time. But she was not to blame. No one was to blame. What is to blame is his mistreatment of her. He broke down a door once to get to her and broke the chair that was behind it as well. He charged up the stairs into her room where she was cringing, cowering in fetal position and he pounded her back and head with his fists. I tried to pull him off but I was no match for him. Screaming, crying. Unimaginable but real. The poor child was cutting herself with mirror chips, glass and paper clips, crying out for help. There were a couple of times that people suspected but he charmed and lawyer-spoke his way out. Just another big fat joke.

They were in a store - she wanted a book, but he became too impatient to wait in line, which, naturally, upset the child. She started to put up a fuss as any child under the circumstances would and he dragged her out by her hair, calling her a "fucking psycho" for good measure. Right out in public. No one did a thing.
I worked outside of the home and he did not, so things were going on that I wasn't aware of. I will torture and blame myself for that till the day I die. And she did all she could do to hide it from me because of her fear of him. We were trapped by fear.

He takes medications keeping the beast at bay, but I still believe the beast lives. You may see it one day. The depth of his selfishness and cruelty will astound you. This is the warning. He should have bright day-glo orange warning lables front and back. Biohazard. Beware.

So, do not be surprised when you see his spots.....

Tuesday, January 3, 2012

Life with autism....

My daughter is twenty-four years old. Very hard for me to imagine, particularly when I look back at how incredibly difficult it was to raise a child with autism.

She was diagnosed at age six, but it was clear there was something going on when she was only a year and a half. Struggling to find out what that something was took perseverance but also led to moments of complete desperation. Pounding my fists into the steering wheel. Sleep deprivation because the child didn't ever seem to sleep. Picking her up and fleeing from the supermarket/department store/restaurant because she was beginning to tantrum. Knowing her tantrums could last more than an hour. Hoping the Department of Social Services wouldn't knock on the door and actually being surprised they never did because the screams were loud and long. Having people give inane advice. Easy for them, they could walk away. "It's the coca cola." She never had any coca cola.  "She just wants your attention." She is my only child, how much attention can I give her? "You are too hard on her." "You aren't hard enough on her." And my very favorite of all, "She looks good."

Finally, at long last, a diagnosis. It felt, briefly, like there was a direction to go in. But things didn't get any easier, they just had labels. Perseverance. Echolalia. Lack of empathy. Monologues. Spinning. Sensory overload. Sensory integration. Social skills. Social stories. Voice prosody. Black and white thinking.

She was placed on medication to help her sleep, to help her focus, to regulate her mood. The medications were changed many times over the course of years. Did they help or did they harm her? Did anyone help or did everyone harm her? Certainly the schools failed. Most of them, anyway, with a few bright lights here and there as shining examples of what could be.

My marriage didn't survive.  It wasn't the autism, but having a child with special needs makes everything, including marriage, more difficult. He just couldn't hack it and took the coward's way out and gave up custody totally and immediately without my even asking. Love, Dad.

I moved to Astoria, Queens, back home to New York. The NY schools failed her too. Then the freaking social services did get involved, oh god, and trouble with the law and time in a residential "school." A school that didn't educate but did a great job of over medicating. More fighting, more trouble, lawyers, courts, what a nightmare. Then the New Jersey schools came to the rescue. There is a woman who heads the special ed board who reminds me of Judge Judy and she, although a tiny little woman, let those bastards at the residential facility have it. (hooray) My daughter finally got a real high school diploma, although truth be told, she is missing a couple of years worth of formal education.

The young lady is in college now. I am supremely proud of her. At the same time, she is still not easy to live with. She spends most of the time on campus but when she is home as she is now, the differences between autistic and non-autistic come to the fore. Her sleep is still not regulated. She leaves lights on all over the place and all night long. She can come off as awfully rude - hard for even me to take and I understand what it is. For instance, I have had recent major surgery to my foot. I have been on crutches for weeks and weeks. She has not once asked my how I feel, or how I am doing. She still thinks I can take her places (I can't drive with pins in my foot) and acts as if I am somehow at fault for not being able to do so. She has not offered to help me in any way. She has trouble following directions. Often she does not respond when you speak to her. She slams doors even when she is "happy." She paces around like a caged animal and has had no contact with any friends. She does not drive but I wonder if she should.  It sounds like such a scarey proposition, but getting around without knowing how to drive is time consuming, inconvenient and hard. She ackowledges her autism now after years of denying it but still sees herself as a victim.

The first twelve years of her life are contained within "Astoria Story" - my next book will include more recent trials -  literally, unfortunately, and the trials that come with suicide attempts and toxic boyfriends.

There are days when I can picture her on her own, working, continuing her education and coping as an independent person. There are others when I wonder how she will ever be capable. Two steps forward, one step with autism.