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.http://www.smashwords.com/books/search?query=astoria+story
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 back...life 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.http://www.smashwords.com/books/search?query=astoria+story
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 back...life with autism.
No comments:
Post a Comment