I have become firmly addicted to facebook lately; it’s been my social outlet, so my motivation for blogging has really declined, BUT. I have been thinking a lot about how we use these social networking sites online to compensate for our isolation. One thing that a lot of parents of special needs children have in common is isolation. It’s so challenging to find a place you can safely take your children, and where they will be enthusiastically included. Social excursions are so trying. A big effort I made this summer was to get my big aspie boy some social skills training so that he might navigate the world with a little more ease. A while back I was discussing how he had been excluded from the youth group at our church, and it has stuck in my crawl so badly that this summer, I took him back to the church and insisted that they include him. They weren’t interested in learning about asperger’s or what kind of accommodations he might need (apparently saving the souls of the least of these is not very high on the agenda of many churches), but by god I forced him on them. And I’m still doing it.
But it’s not just the church; far from it. We are often excluded by our own families who would rather pretend there is no problem than make the effort to learn about what they could do to help, or at the least include their own kin who might have a challenge or two. Most often I have been scolded for poor discipline, but this is not an uncommon occurrence among families who have children whose symptoms present behaviorally. Hell, it’s not uncommon among families who have kids with purely physical disabilities.
Truthfully, many families have issues even when all members are neuro typical, and when mental challenges run rampant, forget about it. You can have all the love in the world, but where ignorance reigns supreme, well, dysfunction is the order of the day. As my grandmother deteriorated in the last years of her life, several of her relatives lived with her, including my own mother at times, and took a tag team approach to caring for her. She was most afraid of losing her mental faculties, and becoming a burden on her children, and both those things happened. The relatives that didn’t live with her often criticized the relatives who did live with her as taking advantage, but the truth was, she was difficult. She became unable to make decisions concerning the maintenance of the house, and no one wanted to override her, not the people who lived within or the ones who lived without. As a result, the house fell almost to ruins by the time she died, and no one wanted it. In order to sell it after she died, the land had to be separated from the house, because no one wanted that money pit.
My grandmother's house is up the road from where I'm living now, and it KILLS ME that someone outside of our family bought it after she died b/c the relatives couldn't get their act together and come to an agreement about it. My grandparents had it built, they bought the land first, and my grandfather was a farmer who did a lot with his own two hands. He's been gone over twenty five years, but she was with us until 2005. It has SO MANY positive memories for so many, because there are over thirty acres of woods with it. She loved bird watching, and above all else, many of us wanted to honor her memory by preserving that woods. God willing, that will happen, but nobody can say for sure. Like they WOULD HAVE BEEN ABLE TO if one of us kept it. I LIVE HERE because I moved back to be near to her in her last years of life, and now I have to drive by it and see SOMEONE ELSE living in it. I would have been happy if ANY member of my family had it, and I would have loved to have had it myself, and fill it up with adopted special needs kids. But no way could I have afforded to restore it without help. Thank god it's a pumpkin patch now so that for as long as that business survives, we can at least go and visit it every year.
My grandmother has been gone now for almost five years, and there is still bad blood between the relatives because of this. The way they fought stupidly over stuff in the attic that nobody cared about for thirty years was just devastating. We all LOVED each other. Why did they make each other feel bad about some stupid trunks of moth eaten blankets in the attic for chrissakes? The PROPERTY, the land, the bird preserve is what MATTERED. There were several people who might have wanted it. We just couldn't come together and agree that we should all help one of us buy it, nobody could agree who was responsible enough to keep it up. Very ugly words were exchanged. So now, NOBODY has it. Great solution. And people are still very hurt about it. We couldn’t even manage to be a village for each other.
Oof. Once again, I am reminded that getting older does not mean becoming more mature.
But why can’t we do better than this? Why can’t we see that we all need a village? Why at least can’t extended families be a village for each other? How do we not see that the world is better for everybody when we take care of our families, and our neighbors, and our communities, and even people in deep need in other, far away places. Like New Orleans. Or tsunami victims in Sri Lanka. But we don’t even do it for people who are related to us. We are much too disconnected. I think not everyone is cut out to be a parent, and nor should they feel like they have to. There is a tremendous societal pressure for EVERYONE to procreate, though we clearly already don't have enough resources for the kids of the present and future anyway. I was compelled to adopt at an early age, and by god, I wish I'd followed that instinct. There are plenty of kids out there who feel unwanted. Godwilling, I will regain my health and go down that road again someday.
Do you know on a survey (this is going back over ten years now, but it made the news, big and scientific, very respectable with a huge amount of responders) the number one thing that people WOULD NOT do if they had to do it over, was have children? It is hard enough in this world to have children when you REALLY REALLY want them AND have a very committed partner in doing so. I don't care what your politics are, it takes parents AND a village to raise a child. And we need more people who are willing to be the village, and less parents who carelessly make children. You childless by choice people out there? NEVER apologize for not breeding, the only regret is not doing something you REALLY wanted to do. Or the long ass list of things I want to do when the kids are older which is rapidly becoming shorter because of my health. So. While I'm waiting to get more kids, I'm trying to be a better village.
Can you tell I could rant on that subject for hours? Some of it is because I have custody of someone else's child whose parents were judged terribly, and then given no help. And now, I have my own special needs kids (both my boys are mildly autistic, but mercifully high functioning), and I have been in the same spot. Everyone wants to judge, few want to put their money where their mouths are. We have VERY expensive private medical insurance, with HUGE copays, and the service we get is for CRAP. My dad used to get on his soapbox about how wonderful HMO's were, until it almost cost him his life. It certainly cut into the quality of his remaining time. I suspect he had other plans for his retirement years. Having kids is an enormous risk, even if you are the most responsible person on the planet. Just taking care of yourself, even if you do everything right, can be wildly expensive. I can't believe the amount of money I am going to put in my mouth even though I have always kept my teeth clean. No escaping genetics.
Who’s to say who is responsible enough to have children anyway? Life isn't fair sometimes. Just hanging on to the most basic of resources, a home, is tricky.Weather happens, the market changes, property taxes become RIDICULOUS, Wallstreet executives get away with criminal behavior and everyone loses their retirement money. There are no guarantees.
I always say that friends are family that you get to choose for yourself, and very often, they make up for the family that you got stuck with. Thank god for them. My best friend is a girl who was in my house the night my mom went into labor with me, so you could say we go way back. Her kids will come to me if she dies, her husband is gone and probably none of the plenty family she has on both sides will want to deal with it. Funny, we don't have that much in common either, but it's the time you spend that matters. We don't like the same music, tv shows, movies, or have the same hobbies, career interests, are opposites in our choices of men. She smokes, I am horribly allergic. The list is long. But when I gave birth to my first child in L.A. and she was just graduating from her masters in Philly, she packed up everything she owned, dragged her unwilling boyfriend, drove across country with a freaking uhaul, and came and lived near me for two and a half years in expensive L.A. county with no job prospects, just faith in me. And that birth/recovery (long, long recovery) almost killed me, I can't tell you how precious it was to have her living nearby during that time.
And when she gave birth to her twins prematurely seven years later, I packed my bags and my kid, left my husband and our very first newly purchased HOUSE (you know what a big deal that is in L.A.) and moved in with her across the country while she needed me. We lost the house, ultimately, because of that choice (and because of 9-11), but I wouldn't trade.
That's what family SHOULD be, but so often isn't. So if we’re lucky, we just choose it for ourselves, and are glad that we found it. I haven’t seen my best friend for a year, even though we live just an hour apart now, but I could pick up the phone, ask her for help, and she’d be right there. If she could get a sitter! And I wish I could say that I had a lot more friends like that, but truthfully, I don’t have the time to develop those relationships now. My mother is seventy years old, with diabetes and schizophrenia, and I am terrified at the thought of losing her, because she is my mother, and also because she has been our lifeline. I have even considered moving back to L.A., because we have five rapidly aging parents there too, and they will probably need us soon. In the meantime, we have needed their help too. But we need a bigger village, now more than ever. And in order to develop those relationships, we need to be able to go where our children are welcome and included. And if I wasn’t so tired, I would create that place if needed to. But for now, we are still dependent on the kindness of strangers who aren’t as tired. So if you aren’t already, please, consider becoming part of a village, or even creating it.
Sunday, October 11, 2009
Monday, June 8, 2009
My sixteen year old aspie boy wrote this
I was trying to login under his I.D. to post this, since he wrote it, but I forgot his login I.D., so oh well.
A little bit of background here: my son T-Bone just turned 16, and he has Aperger's Syndrome, which is a relatively high functioning form of autism. I home schooled him privately until he reached middle school age. He is currently enrolled in a cyber charter school, which means the curriculum is delivered over the internet into our house, and he completes his assignments from the slightly less overstimulating environment of our home. Writing has always been a big challenge for him, so this year at the recommendation of one of his other teachers, he enrolled in a creative writing class, and it was very very hard. So hard that I wanted to recommend that the first teacher do something else for a living. The creative writing teacher told me afterwards that "most" of her other students were seniors, and that T-Bone was her only freshman.
Now granted, most kids his age are one grade higher, but still, this was an extra challenge we didn't need. He really struggled in this class, but his final assignment was to write something called a "personal belief" essay; the idea was to take one of your personal philosophies and explain why you came to have it, and there were a bunch of other picky instructions, but you get the general idea. He told me that he actually enjoyed writing this essay, which was a big switch in attitude from the other assignments he had in this class this semester, believe me. I was so proud of him that I decided I would post it on my autism blog (it's supposed to be OUR autism blog). We are a couple months late for autism awareness month, but hey, why not spread awareness all year long.
This is it:
“Just Keep Swimming”
He was often seen in a wheel chair. He couldn’t walk without leg braces, canes or assistance of some kind. He had had polio, so it was lucky that he could walk at all. He was the president of the United States, and he had the job longer than anybody else ever did. My mom used to read me a story about F.D.R. when I was little called Breakfast at the Liberty Diner, which she could barely get through without crying because it was about someone who had triumphed over a disability and inspired others.
When I was very little, my mother said I was “super active” compared to other kids and I couldn’t keep from touching everything, I needed to feel everything. The other thing she said was that I was slow to process or respond to instructions. For example, if she told me to stop doing something, it would take me a while to understand what she was telling me to do. Because of these reasons, my mother thought it would not be a good idea to put me in regular school because I probably wouldn’t do well there. When I was six years old in 1999, I was very sick and my mother took me to a doctor who helped me get better. He told her that my sickness contributed to my odd behavior. He said I would have been diagnosed with autism at any other office, but his main concern was getting me healthy again.
My mother wanted to home school me because she wanted to keep me from getting sick again and because regular schools probably wouldn’t have fit me well. Everyone, both friends and family, said that home schooling was bad for me. They said I wouldn’t learn how to read. My mom even tried using phonics books, but they didn’t help. But in 2001, I did learn how to read on my own. It happened when I was playing video games and I wanted to read the text that had important clues on how to beat the game. It also helped that when there were subtitles when the characters talked; it helped me figure out how to spell each word they were saying. I also learned how to ride a bike without training wheels. Some people said that I couldn’t do it, it would be too dangerous. I had help from a friend who showed me how. There were also other kids in the neighborhood who rode their bikes around, so it helped me feel like I fit in when I was able to ride with them.
People also said kids with autism could not interact with other kids in group activities without disrupting everyone. But, in 2003 in a church youth group program, I was able to sit down and listen during bible study and play with the other kids during outdoor activities, like kickball. People also said that home schooling would make me develop unevenly in each academic subject. But in 2005, at age twelve and a half, when I enrolled for the first time in a publicly funded charter school, the placement testing showed that I was at the 7th grade level, which was two steps above the level that I was currently studying.
When I was almost thirteen, I was surfing a site that students used for research material on school assignments. On it, I saw a video that talked about a condition called autism. I thought the descriptions of kids who had autism were similar to how I was. Before I saw the video, I always thought I was just weird. But now I felt great relief when I had an explanation for why I was the way I was. So now I knew I had it, but did that mean I should just give up on life? No, it just gave me better information so I could figure out how to best approach a challenge.
In 2006, I went on a trip. My mother was terrified; I was supposed to go on a plane all by myself all the way to California. What we had to do was know my needs and not try to stretch me too much at once. For example, we decided to have me fly a non-stop plane instead of having a plane stop at another airport and then get off and get on another plane because I was nervous that I might get lost and end up on the wrong plane. I could literally taste the fear in my mouth as I walked through the gate. I managed to successfully get on the plane and went all the way to California. I was so proud that I was able to do something of this magnitude independently.
I keep trying to stretch a little more every year. I would like to be able to live on my own someday, even if I need some support to do that, that will be ok, but I want to be able to be as independent as possible. I want to have normal friendships with other people, I want to be able to get along with co-workers and hold a regular job, and I want to maybe even get married, have children and own a house. Last summer I went to a camp where the counselors were trained to take care of kids with autism. On that particular week, my brother and I were the only ones there (as far as I know) who had autism. But with the help of those counselors, I did everything the other kids did. I participated in everything that everybody else did – rock climbing, swimming, fishing, playing group games, making arts and crafts, cooking our own food, and riding the zip line.
Sure, I had to stop sometimes and rest, and took a nap a lot of afternoons, I also needed to get somewhere quiet once in awhile and take a break from all the overwhelming sights, sounds and smells that are often associated with a kids camp in the mountains. But the point was that I did it. I could do it, and I will do it again. My point is to always keep trying, even if people tell you that you can’t do something, or you shouldn’t be able to do something, you might as well try especially if it’s something you want to do. Sometimes you can’t, and that’s ok, at least you will be able to do it some of the time. Maybe you’ll have to wait awhile and try again, and maybe you need to come back better prepared next time. But if you never try, then you will never succeed. You don’t need someone else to tell you what your limits are; you can decide that for yourself.
A little bit of background here: my son T-Bone just turned 16, and he has Aperger's Syndrome, which is a relatively high functioning form of autism. I home schooled him privately until he reached middle school age. He is currently enrolled in a cyber charter school, which means the curriculum is delivered over the internet into our house, and he completes his assignments from the slightly less overstimulating environment of our home. Writing has always been a big challenge for him, so this year at the recommendation of one of his other teachers, he enrolled in a creative writing class, and it was very very hard. So hard that I wanted to recommend that the first teacher do something else for a living. The creative writing teacher told me afterwards that "most" of her other students were seniors, and that T-Bone was her only freshman.
Now granted, most kids his age are one grade higher, but still, this was an extra challenge we didn't need. He really struggled in this class, but his final assignment was to write something called a "personal belief" essay; the idea was to take one of your personal philosophies and explain why you came to have it, and there were a bunch of other picky instructions, but you get the general idea. He told me that he actually enjoyed writing this essay, which was a big switch in attitude from the other assignments he had in this class this semester, believe me. I was so proud of him that I decided I would post it on my autism blog (it's supposed to be OUR autism blog). We are a couple months late for autism awareness month, but hey, why not spread awareness all year long.
This is it:
“Just Keep Swimming”
He was often seen in a wheel chair. He couldn’t walk without leg braces, canes or assistance of some kind. He had had polio, so it was lucky that he could walk at all. He was the president of the United States, and he had the job longer than anybody else ever did. My mom used to read me a story about F.D.R. when I was little called Breakfast at the Liberty Diner, which she could barely get through without crying because it was about someone who had triumphed over a disability and inspired others.
When I was very little, my mother said I was “super active” compared to other kids and I couldn’t keep from touching everything, I needed to feel everything. The other thing she said was that I was slow to process or respond to instructions. For example, if she told me to stop doing something, it would take me a while to understand what she was telling me to do. Because of these reasons, my mother thought it would not be a good idea to put me in regular school because I probably wouldn’t do well there. When I was six years old in 1999, I was very sick and my mother took me to a doctor who helped me get better. He told her that my sickness contributed to my odd behavior. He said I would have been diagnosed with autism at any other office, but his main concern was getting me healthy again.
My mother wanted to home school me because she wanted to keep me from getting sick again and because regular schools probably wouldn’t have fit me well. Everyone, both friends and family, said that home schooling was bad for me. They said I wouldn’t learn how to read. My mom even tried using phonics books, but they didn’t help. But in 2001, I did learn how to read on my own. It happened when I was playing video games and I wanted to read the text that had important clues on how to beat the game. It also helped that when there were subtitles when the characters talked; it helped me figure out how to spell each word they were saying. I also learned how to ride a bike without training wheels. Some people said that I couldn’t do it, it would be too dangerous. I had help from a friend who showed me how. There were also other kids in the neighborhood who rode their bikes around, so it helped me feel like I fit in when I was able to ride with them.
People also said kids with autism could not interact with other kids in group activities without disrupting everyone. But, in 2003 in a church youth group program, I was able to sit down and listen during bible study and play with the other kids during outdoor activities, like kickball. People also said that home schooling would make me develop unevenly in each academic subject. But in 2005, at age twelve and a half, when I enrolled for the first time in a publicly funded charter school, the placement testing showed that I was at the 7th grade level, which was two steps above the level that I was currently studying.
When I was almost thirteen, I was surfing a site that students used for research material on school assignments. On it, I saw a video that talked about a condition called autism. I thought the descriptions of kids who had autism were similar to how I was. Before I saw the video, I always thought I was just weird. But now I felt great relief when I had an explanation for why I was the way I was. So now I knew I had it, but did that mean I should just give up on life? No, it just gave me better information so I could figure out how to best approach a challenge.
In 2006, I went on a trip. My mother was terrified; I was supposed to go on a plane all by myself all the way to California. What we had to do was know my needs and not try to stretch me too much at once. For example, we decided to have me fly a non-stop plane instead of having a plane stop at another airport and then get off and get on another plane because I was nervous that I might get lost and end up on the wrong plane. I could literally taste the fear in my mouth as I walked through the gate. I managed to successfully get on the plane and went all the way to California. I was so proud that I was able to do something of this magnitude independently.
I keep trying to stretch a little more every year. I would like to be able to live on my own someday, even if I need some support to do that, that will be ok, but I want to be able to be as independent as possible. I want to have normal friendships with other people, I want to be able to get along with co-workers and hold a regular job, and I want to maybe even get married, have children and own a house. Last summer I went to a camp where the counselors were trained to take care of kids with autism. On that particular week, my brother and I were the only ones there (as far as I know) who had autism. But with the help of those counselors, I did everything the other kids did. I participated in everything that everybody else did – rock climbing, swimming, fishing, playing group games, making arts and crafts, cooking our own food, and riding the zip line.
Sure, I had to stop sometimes and rest, and took a nap a lot of afternoons, I also needed to get somewhere quiet once in awhile and take a break from all the overwhelming sights, sounds and smells that are often associated with a kids camp in the mountains. But the point was that I did it. I could do it, and I will do it again. My point is to always keep trying, even if people tell you that you can’t do something, or you shouldn’t be able to do something, you might as well try especially if it’s something you want to do. Sometimes you can’t, and that’s ok, at least you will be able to do it some of the time. Maybe you’ll have to wait awhile and try again, and maybe you need to come back better prepared next time. But if you never try, then you will never succeed. You don’t need someone else to tell you what your limits are; you can decide that for yourself.
Sunday, May 10, 2009
A Mother's Day reflection
I have been called an over protective mother. I really can’t care. From the first day I realized that each of my boys have a mild form of autism, I have felt like I am flying blind. There aren’t any well established rules and guidelines for my husband and me, I just arrogantly assumed when I was pregnant that I would most likely have neuro-typical children as was probable according to my gene pool. And when I first heard the word autism, I hadn’t really ever encountered it before to my knowledge in the form of a person in real life. I didn’t know anything. Books on autism and parenting tips are just recently published or coming in the near future.
Almost sixteen years later, I can tell you that MY children with autism are a lot less cautious, and a lot more vulnerable than typical kids. I have heard the argument that mothers of my generation are just over protective as a result of the pendulum swinging back in the opposite direction from the generation of latch key kids who were the product of rampant divorce from the mid sixties to the mid eighties. I haven’t exactly seen the divorce rate decrease, but I guess I have seen parents grow more paranoid, and maybe we just feel like the world is a less friendly place.
I don’t know if statistics bear that out, but if the latch key/pendulum theory is right, then I have two reasons to be over protective. My mother was a single mom who worked full time from the year I entered kindergarten until I moved in with my dad during high school. I was one of a zillion kids who came home to an empty house (several years before I reached teenagerhood), and after that, the peril increased as my much older brothers came home, often with a pack of their friends. To be honest, when I think back on it, it was lucky that much worse things didn’t happen to me than what did.
Dad’s house was more affluent, more educated, but not a lot safer. I continued to put myself in perilous positions with bad decision making, which was mostly a result of poor judgment and lack of defensive skills versus bad attitude. Those were also the last few innocent days before the advent of the time when sex might lead to death, and drugs went from an amusing recreational enterprise to a seriously scary more accessible business at lower and lower ages. There were no chats on the web with total strangers who attempted to lure us to engage in frightening behavior, bullies didn’t have the weapons of mass media in their arsenal, and tv shows didn’t heavily promote the idea of emotionally detached, sexually sophisticated teenagers as the new standard of cool. I neither saw nor heard of kids on campus with guns. Knives yes, guns no.
When I think of how I am desperate to protect my kids from all the dangers that I didn’t have to face myself, truthfully, I know I would be the same way, even without the addition of all those new hazards. I remember a boy, a boy who never got to be a man, a boy whose mother will never get to see his face or feel his hug on Mother’s day on earth again.
He scared me, he was a bad boy. And yet I was secretly attracted to him. It had nothing to do with the unspoken allure of “bad boys,” there were aspects of his personality that I liked, and I could never reconcile how his personality traits weren’t mutually exclusive. So he also had the intrigue of enigma going for him also. I was always trying to figure him out. I was too young, or at least too immature to have considered having a boyfriend anyway, but I couldn’t stop thinking about him at school and at home. If he would have ever even glanced in my direction, I would have wet myself.
He was fearless, which was the opposite of me, and something that I wished to be. He was good-looking, in a rugged kind of way; he certainly didn’t groom to be “pretty,” he definitely had the air of “don’t give a damn about my looks” about him. He got into fights. He played pranks. He did what I considered to be the most frightening and foolish thing of all: he DREW ATTENTION TO HIMSELF with his behavior. What amazed me more than anything was that he wasn’t even TRYING to get attention; he would have rather dodged it. He was too busy to be bothered with answering to adults with an accounting. But the school principal was well aware of him.
I couldn’t have stopped thinking about him if I wanted to, he was in more than half my classes. Ok, this is where I will sound like a total snob, but the way the students were divided up, it was obvious to me that I had been assigned in a track with “smart kids,” or at least the high achievers. I was actually puzzled as to why I was there, as far as I was concerned, they were NOT my peers. I was shy, I didn’t want my teachers to have high expectations of me, with good reason. My report cards from that time reflected my resentment and fear of challenging subjects.
And I would have thought (again with the assumptions) that with his attitude and his, uh, other behaviors, that he wouldn’t have been in that particular track either. I associated his personality with the dumbasses, or at least the other kids who didn’t give a rat’s butt about school. The kids who smoked on campus in the bathrooms at lunchtime, the ones I was sure would soon have tattoos, probably before they graduated even. I’m talking about the group of kids who knew how to fix a car before they could even get a driver’s license. He definitely acted that way. It separated us from the other kids in a way; the two of us were the odd men out so to speak, at least in my head.
He was very aggressive if you crossed his path, and I’m sure some of the other girls were afraid of him too, especially some of the nice, sweet, studious type girls who were typically in my classes. He was kind of a wild card, especially since I had never seen him in elementary school; I didn’t have any idea what he was capable of doing. I heard and saw him call another girl a very nasty phrase once when he was ticked, and it terrified me that I might ever be at the receiving end of his unpredictable anger fueled behavior. One of my teachers had the nerve to get knocked up in the middle of the school year, and on a few occasions she divided up her class and sent small groups to other teachers because she didn’t “feel well.” By virtue of what system I don’t know, the two of us were in a small group LEFT ALONE in her class room while she went to barf. I was scared spitless that he would either do something scary TO me, or would do something else for which we would all get BLAMED.
But I had seen him be kind on occasion, a loyal friend, and a possessing wicked sense of humor. And despite his lack of love of academic learning, he was obviously smart as hell. I was certain he was a good catholic mama’s boy who went to church every Sunday, and I knew he came from a large family, to whom family was important. And on one occasion I saw him outside of school at a community fair at night, were he was walking around with a group of his friends, shirt unbuttoned, strutting like he owned the place, holding a glass bottle which was probably a soda but held the distinct possibility of containing alcohol. He was so cool, and yet so hot at the same time if you know what I mean. I steered far clear from his path, but my hormones went into overdrive just recalling that picture in my head.
I started a new path in life, and I hadn’t seen him in years when one day I came back to visit my home town. My old best friend introduced me to a new friend of hers, and they suggested I visit a new community enterprise, at which her brother was employed. “He’s handsome,” she promised me with a wink and a nod. “And he graduated from your old school. His name is XXX YYY.”
“YYY sounds familiar,” I replied. “Do you have an even younger brother, maybe just my age? Blond hair?”
She was across the room when she answered, or I would have seen something was wrong in her face right then. “You knew ZZZ.”
I should have noticed her use of the past tense, but I was so excited that I was about to get some news about my previous crush, that it didn’t strike me immediately. After all, I didn’t know him NOW, I had known him THEN. “I sure do!” I began an accounting: we were in a lot of classes together, him and me and then all those “smart kids.”
“ZZZ is dead.” At least, I’m guessing that’s what she said, or it had to have been some variation of that, certainly. I was in such shock at the news of his demise that I don’t remember exactly how she put it. But I felt the weight of it like a physical blow, followed immediately by a huge sense of regret that I had brought up what was an obviously painful subject for her. She was flitting around the room muttering “where is my brother’s stuff. I always keep his stuff with me every time I move, I always want to have his stuff with me.”
It hadn’t completely sunk in yet. I mean, DEAD? How could that possibly be? Someone MY AGE was dead? Our lives were supposed to be just starting! How on earth could this vibrant, larger than life character possibly be DEAD? He was so young! He had been so good looking! He had such great potential! So many people liked him! He was tough! He could take care of himself! How could he be DEAD?!?!?
She gave me a plastic bag with a drawstring which held an assortment of papers, ribbons, newspaper clippings, etc. I carefully went through every piece of it. He had been in a foolish car accident; he hadn’t even been the one driving. He had been a hero, said one account. He had by his actions saved the life of the other passenger in the car. It might have just been wishful thinking, the kind of justification one makes when one needs to make sense out of the senseless.
I was sure when his mother saw him leave that night to go out with his friends that she was certain she would see him again, that it wouldn’t, couldn’t possibly be the last time she would see him alive. I was certain that she was a good mom who took good care of her kids. What could she have done differently, except for to smother him? I doubt he would have accepted that, recalling his personality. As I examined each artifact, I saw a picture of him in an ugly standard prom tuxedo, with a girl that I knew on his arm. He had continued his life after I left; he had softened enough to take a girl to the prom. He had done things I didn’t know about, he was in the process of becoming who he would be, which was probably considerably more than just a bad boy. And I had wanted to see how he would turn out.
And I was more than I had been. I was pretty for the first time in my life (actually not the first time, just the first time I noticed that I was pretty). I was gaining confidence, I was a good student, I was going to amount to something too. I had VALUE. I hadn’t wanted him necessarily, but I discovered that I had wanted him to see it. I don’t really know why. What would that have validated for me? That I was at least worthy of his attention? Maybe. Whatever. Whatever I had wanted paled in comparison to the fact that he was never coming back, could never come back. Would never be whatever it was he was becoming, and the world, and especially his family, his mother, would never get to see it. All because he, or someone he had been with, had decided to act foolishly in a car.
What was it like for his mom to get that phone call? When can I let MY kids go out without ME? Without any adult supervision? When can I let them get in the car with another kid their age? How do I keep them from drinking, or doing drugs, or having sex too soon? How do I keep them from trying to imitate race car drivers, or trying to prove that they are tough enough to take on our neighborhood “bad boy?” How do I stop them from doing the same stupid things that I did (which I will not enumerate in order to protect my own parents who might be reading this)? Or worst of all, how can I prevent them from becoming a target of someone else’s bad intentions? Or just someone else’s really bad judgment? If regular kids are at risk, how much does it increase when applied to my kids? If I should ever get one of those phone calls, I can’t imagine how I could keep living. I would never kill myself, but how could I keep going?
I have a really big challenge ahead of me in just making sure my kids reach their academic potential, but what’s more important is their need to reach their independence potential. It’s too soon, and much too uncharted territory for us to even know what that is. In the meantime, I struggle with just keeping them alive. A few years ago, my oldest son had appendicitis which perforated and was undetected because he was unable to communicate sufficiently and advocate for himself with an unfamiliar doctor when we let him for the first time get on an airplane by himself and cross the country. We got him back just in time for a surgeon to save his life. The surgeon was surprised by what he found as he explored my son’s insides. How could a child have that condition and have kept walking around? Welcome to autism, doc.
My younger son is constantly under our watchful guard from only a few feet away, because it would never occur to him naturally that a car could mow him down and snuff him out in just a few seconds. They are both home schooled now, but it is clear to me that my youngest is going to need more than that. But when will it be ok for me to put him on a bus and stay for several hours in the care of our notoriously unconcerned local school district when he can’t yet fend for himself on a relatively basic level?
Becoming and being a mother is by far the most meaningful thing I have ever done, and truthfully, there are days when I am consumed by fear, and wish I had never done it. The thought of never meeting my sons makes me want to cry, and yet, the weight of responsibility that would be lifted from me if I hadn’t would be so liberating. I was an anxious child, to be sure, but it was nothing compared with this. They are so precious to me, and the possibility that I might get it wrong, or at least not end up with a favorable outcome, strikes fear in my heart on nearly a daily basis. I adore them, but I rarely find peace anymore.
Whatever I manage to accomplish in my life, I know it will be pretty meaningless unless I get things right with my kids. I have a young cousin that lives with me, she has technically reached the age of adulthood, and everyday I am consumed with what she needs as well. She is right on the cusp; it is critical to get it right. I am so concerned with making sure she goes down the right path, and I can’t even claim responsibility for her! She wants and needs to make decisions for herself, and I can’t talk about her too much without invading her privacy. This is a gifted child with a high moral character. But how I worry! Because if she’s not alright in the long run, it will weigh heavily on my heart.
Something greatly disturbing happened last week to some acquaintances. After struggling mightily to get pregnant, and suffering a difficult delivery, a couple we knew brought home a beautiful baby girl. Her mother recovered quickly, but promised that this child would be the only one due to the trauma of the experience. After celebrating her third month birthday, their daughter suddenly died in her sleep without any rhyme or reason. I can’t even imagine what her mother must be feeling on this, which would have been her first, mother’s day.
I had called my husband at work to warn him, I didn’t wish to relay this disturbing news over the phone, but I couldn’t take the risk that he might coincidentally run into this couple and inquire about the baby without knowing what had happened. He came home in shock. We discussed how frightening is the fragility of human life, and that despite the comfort of faith, how devastating is the death of a child. And there is no one that can add anything extra to their life by worrying about what MIGHT happen, knowing that it serves no purpose doesn’t stop me from doing it all the time. While I have the comfort of prayer, I also have the burden of KNOWLEDGE, and the freedom of choice. I chose to have children, and I know that bad things can happen to good people too. But without the risk, nothing good can happen either.
I don’t know why I suddenly remembered that boy today, I was just thinking about how scary it is to be a mother, and wondering why on earth I wish I had more children. His mother had lots of children, but it never compensates for the one that is gone. I wonder how she feels on every mother’s day that’s happened since he passed away; can she celebrate, or does she just remember the one that isn’t there, the one that isn’t wishing her a happy mother’s day today? All I can do to find a positive spin right now is to vow that today, just even for a few minutes, I will APPRECIATE that I got to be a mother, and maybe stop worrying about it for just a few minutes, and enjoy it. Maybe even say “thank you.”
Almost sixteen years later, I can tell you that MY children with autism are a lot less cautious, and a lot more vulnerable than typical kids. I have heard the argument that mothers of my generation are just over protective as a result of the pendulum swinging back in the opposite direction from the generation of latch key kids who were the product of rampant divorce from the mid sixties to the mid eighties. I haven’t exactly seen the divorce rate decrease, but I guess I have seen parents grow more paranoid, and maybe we just feel like the world is a less friendly place.
I don’t know if statistics bear that out, but if the latch key/pendulum theory is right, then I have two reasons to be over protective. My mother was a single mom who worked full time from the year I entered kindergarten until I moved in with my dad during high school. I was one of a zillion kids who came home to an empty house (several years before I reached teenagerhood), and after that, the peril increased as my much older brothers came home, often with a pack of their friends. To be honest, when I think back on it, it was lucky that much worse things didn’t happen to me than what did.
Dad’s house was more affluent, more educated, but not a lot safer. I continued to put myself in perilous positions with bad decision making, which was mostly a result of poor judgment and lack of defensive skills versus bad attitude. Those were also the last few innocent days before the advent of the time when sex might lead to death, and drugs went from an amusing recreational enterprise to a seriously scary more accessible business at lower and lower ages. There were no chats on the web with total strangers who attempted to lure us to engage in frightening behavior, bullies didn’t have the weapons of mass media in their arsenal, and tv shows didn’t heavily promote the idea of emotionally detached, sexually sophisticated teenagers as the new standard of cool. I neither saw nor heard of kids on campus with guns. Knives yes, guns no.
When I think of how I am desperate to protect my kids from all the dangers that I didn’t have to face myself, truthfully, I know I would be the same way, even without the addition of all those new hazards. I remember a boy, a boy who never got to be a man, a boy whose mother will never get to see his face or feel his hug on Mother’s day on earth again.
He scared me, he was a bad boy. And yet I was secretly attracted to him. It had nothing to do with the unspoken allure of “bad boys,” there were aspects of his personality that I liked, and I could never reconcile how his personality traits weren’t mutually exclusive. So he also had the intrigue of enigma going for him also. I was always trying to figure him out. I was too young, or at least too immature to have considered having a boyfriend anyway, but I couldn’t stop thinking about him at school and at home. If he would have ever even glanced in my direction, I would have wet myself.
He was fearless, which was the opposite of me, and something that I wished to be. He was good-looking, in a rugged kind of way; he certainly didn’t groom to be “pretty,” he definitely had the air of “don’t give a damn about my looks” about him. He got into fights. He played pranks. He did what I considered to be the most frightening and foolish thing of all: he DREW ATTENTION TO HIMSELF with his behavior. What amazed me more than anything was that he wasn’t even TRYING to get attention; he would have rather dodged it. He was too busy to be bothered with answering to adults with an accounting. But the school principal was well aware of him.
I couldn’t have stopped thinking about him if I wanted to, he was in more than half my classes. Ok, this is where I will sound like a total snob, but the way the students were divided up, it was obvious to me that I had been assigned in a track with “smart kids,” or at least the high achievers. I was actually puzzled as to why I was there, as far as I was concerned, they were NOT my peers. I was shy, I didn’t want my teachers to have high expectations of me, with good reason. My report cards from that time reflected my resentment and fear of challenging subjects.
And I would have thought (again with the assumptions) that with his attitude and his, uh, other behaviors, that he wouldn’t have been in that particular track either. I associated his personality with the dumbasses, or at least the other kids who didn’t give a rat’s butt about school. The kids who smoked on campus in the bathrooms at lunchtime, the ones I was sure would soon have tattoos, probably before they graduated even. I’m talking about the group of kids who knew how to fix a car before they could even get a driver’s license. He definitely acted that way. It separated us from the other kids in a way; the two of us were the odd men out so to speak, at least in my head.
He was very aggressive if you crossed his path, and I’m sure some of the other girls were afraid of him too, especially some of the nice, sweet, studious type girls who were typically in my classes. He was kind of a wild card, especially since I had never seen him in elementary school; I didn’t have any idea what he was capable of doing. I heard and saw him call another girl a very nasty phrase once when he was ticked, and it terrified me that I might ever be at the receiving end of his unpredictable anger fueled behavior. One of my teachers had the nerve to get knocked up in the middle of the school year, and on a few occasions she divided up her class and sent small groups to other teachers because she didn’t “feel well.” By virtue of what system I don’t know, the two of us were in a small group LEFT ALONE in her class room while she went to barf. I was scared spitless that he would either do something scary TO me, or would do something else for which we would all get BLAMED.
But I had seen him be kind on occasion, a loyal friend, and a possessing wicked sense of humor. And despite his lack of love of academic learning, he was obviously smart as hell. I was certain he was a good catholic mama’s boy who went to church every Sunday, and I knew he came from a large family, to whom family was important. And on one occasion I saw him outside of school at a community fair at night, were he was walking around with a group of his friends, shirt unbuttoned, strutting like he owned the place, holding a glass bottle which was probably a soda but held the distinct possibility of containing alcohol. He was so cool, and yet so hot at the same time if you know what I mean. I steered far clear from his path, but my hormones went into overdrive just recalling that picture in my head.
I started a new path in life, and I hadn’t seen him in years when one day I came back to visit my home town. My old best friend introduced me to a new friend of hers, and they suggested I visit a new community enterprise, at which her brother was employed. “He’s handsome,” she promised me with a wink and a nod. “And he graduated from your old school. His name is XXX YYY.”
“YYY sounds familiar,” I replied. “Do you have an even younger brother, maybe just my age? Blond hair?”
She was across the room when she answered, or I would have seen something was wrong in her face right then. “You knew ZZZ.”
I should have noticed her use of the past tense, but I was so excited that I was about to get some news about my previous crush, that it didn’t strike me immediately. After all, I didn’t know him NOW, I had known him THEN. “I sure do!” I began an accounting: we were in a lot of classes together, him and me and then all those “smart kids.”
“ZZZ is dead.” At least, I’m guessing that’s what she said, or it had to have been some variation of that, certainly. I was in such shock at the news of his demise that I don’t remember exactly how she put it. But I felt the weight of it like a physical blow, followed immediately by a huge sense of regret that I had brought up what was an obviously painful subject for her. She was flitting around the room muttering “where is my brother’s stuff. I always keep his stuff with me every time I move, I always want to have his stuff with me.”
It hadn’t completely sunk in yet. I mean, DEAD? How could that possibly be? Someone MY AGE was dead? Our lives were supposed to be just starting! How on earth could this vibrant, larger than life character possibly be DEAD? He was so young! He had been so good looking! He had such great potential! So many people liked him! He was tough! He could take care of himself! How could he be DEAD?!?!?
She gave me a plastic bag with a drawstring which held an assortment of papers, ribbons, newspaper clippings, etc. I carefully went through every piece of it. He had been in a foolish car accident; he hadn’t even been the one driving. He had been a hero, said one account. He had by his actions saved the life of the other passenger in the car. It might have just been wishful thinking, the kind of justification one makes when one needs to make sense out of the senseless.
I was sure when his mother saw him leave that night to go out with his friends that she was certain she would see him again, that it wouldn’t, couldn’t possibly be the last time she would see him alive. I was certain that she was a good mom who took good care of her kids. What could she have done differently, except for to smother him? I doubt he would have accepted that, recalling his personality. As I examined each artifact, I saw a picture of him in an ugly standard prom tuxedo, with a girl that I knew on his arm. He had continued his life after I left; he had softened enough to take a girl to the prom. He had done things I didn’t know about, he was in the process of becoming who he would be, which was probably considerably more than just a bad boy. And I had wanted to see how he would turn out.
And I was more than I had been. I was pretty for the first time in my life (actually not the first time, just the first time I noticed that I was pretty). I was gaining confidence, I was a good student, I was going to amount to something too. I had VALUE. I hadn’t wanted him necessarily, but I discovered that I had wanted him to see it. I don’t really know why. What would that have validated for me? That I was at least worthy of his attention? Maybe. Whatever. Whatever I had wanted paled in comparison to the fact that he was never coming back, could never come back. Would never be whatever it was he was becoming, and the world, and especially his family, his mother, would never get to see it. All because he, or someone he had been with, had decided to act foolishly in a car.
What was it like for his mom to get that phone call? When can I let MY kids go out without ME? Without any adult supervision? When can I let them get in the car with another kid their age? How do I keep them from drinking, or doing drugs, or having sex too soon? How do I keep them from trying to imitate race car drivers, or trying to prove that they are tough enough to take on our neighborhood “bad boy?” How do I stop them from doing the same stupid things that I did (which I will not enumerate in order to protect my own parents who might be reading this)? Or worst of all, how can I prevent them from becoming a target of someone else’s bad intentions? Or just someone else’s really bad judgment? If regular kids are at risk, how much does it increase when applied to my kids? If I should ever get one of those phone calls, I can’t imagine how I could keep living. I would never kill myself, but how could I keep going?
I have a really big challenge ahead of me in just making sure my kids reach their academic potential, but what’s more important is their need to reach their independence potential. It’s too soon, and much too uncharted territory for us to even know what that is. In the meantime, I struggle with just keeping them alive. A few years ago, my oldest son had appendicitis which perforated and was undetected because he was unable to communicate sufficiently and advocate for himself with an unfamiliar doctor when we let him for the first time get on an airplane by himself and cross the country. We got him back just in time for a surgeon to save his life. The surgeon was surprised by what he found as he explored my son’s insides. How could a child have that condition and have kept walking around? Welcome to autism, doc.
My younger son is constantly under our watchful guard from only a few feet away, because it would never occur to him naturally that a car could mow him down and snuff him out in just a few seconds. They are both home schooled now, but it is clear to me that my youngest is going to need more than that. But when will it be ok for me to put him on a bus and stay for several hours in the care of our notoriously unconcerned local school district when he can’t yet fend for himself on a relatively basic level?
Becoming and being a mother is by far the most meaningful thing I have ever done, and truthfully, there are days when I am consumed by fear, and wish I had never done it. The thought of never meeting my sons makes me want to cry, and yet, the weight of responsibility that would be lifted from me if I hadn’t would be so liberating. I was an anxious child, to be sure, but it was nothing compared with this. They are so precious to me, and the possibility that I might get it wrong, or at least not end up with a favorable outcome, strikes fear in my heart on nearly a daily basis. I adore them, but I rarely find peace anymore.
Whatever I manage to accomplish in my life, I know it will be pretty meaningless unless I get things right with my kids. I have a young cousin that lives with me, she has technically reached the age of adulthood, and everyday I am consumed with what she needs as well. She is right on the cusp; it is critical to get it right. I am so concerned with making sure she goes down the right path, and I can’t even claim responsibility for her! She wants and needs to make decisions for herself, and I can’t talk about her too much without invading her privacy. This is a gifted child with a high moral character. But how I worry! Because if she’s not alright in the long run, it will weigh heavily on my heart.
Something greatly disturbing happened last week to some acquaintances. After struggling mightily to get pregnant, and suffering a difficult delivery, a couple we knew brought home a beautiful baby girl. Her mother recovered quickly, but promised that this child would be the only one due to the trauma of the experience. After celebrating her third month birthday, their daughter suddenly died in her sleep without any rhyme or reason. I can’t even imagine what her mother must be feeling on this, which would have been her first, mother’s day.
I had called my husband at work to warn him, I didn’t wish to relay this disturbing news over the phone, but I couldn’t take the risk that he might coincidentally run into this couple and inquire about the baby without knowing what had happened. He came home in shock. We discussed how frightening is the fragility of human life, and that despite the comfort of faith, how devastating is the death of a child. And there is no one that can add anything extra to their life by worrying about what MIGHT happen, knowing that it serves no purpose doesn’t stop me from doing it all the time. While I have the comfort of prayer, I also have the burden of KNOWLEDGE, and the freedom of choice. I chose to have children, and I know that bad things can happen to good people too. But without the risk, nothing good can happen either.
I don’t know why I suddenly remembered that boy today, I was just thinking about how scary it is to be a mother, and wondering why on earth I wish I had more children. His mother had lots of children, but it never compensates for the one that is gone. I wonder how she feels on every mother’s day that’s happened since he passed away; can she celebrate, or does she just remember the one that isn’t there, the one that isn’t wishing her a happy mother’s day today? All I can do to find a positive spin right now is to vow that today, just even for a few minutes, I will APPRECIATE that I got to be a mother, and maybe stop worrying about it for just a few minutes, and enjoy it. Maybe even say “thank you.”
Sunday, March 1, 2009
Drowning with Music
When I’m sitting at the computer, I like to blast loud music in my ears with my headphones. I know it’s bad for my hearing, but I need it to drown out all the commotion caused by everyone else in the house. Everyone in the house makes noise; I need silence or sounds that are pleasant to me in order to feel calm, whether what I’m doing is schoolwork or just surfing the net. Of course, the reason why the noise they make is unpleasant to me is because everyone talks or yells, and I’m very sensitive to hearing people speaking around me at any volume above low. Ironically, whispering bothers me almost as much as yelling. If they were stomping around, throwing things or knocking over furniture, it wouldn’t really bother me. If I didn’t have my headphones to block everyone out, I would most likely go nuts.
Friday, February 27, 2009
Buried
I have to take my daughter all over town tomorrow, and I have been super duper sleep deprived this week, thanks to whatever funk baby boy has been going through at night lately, and the fact that teen aspie got a little bit behind in his school work and I needed to help catch him up. To top it off, we are looking at yet another potential snow weather report. I realize that it's winter, and that I have chosen quite deliberately to live in the northeast United States, but crap. I'm too old.
Last month, I got up before 5 am (ok, a couple of those times I admit I was actually still awake) FIVE times to dig my husband's car and our not incredibly long driveway out of the snow before he would begin his thankless hour and a half commute to a not great paying but very steady in this crappy economy job. Did I mention I have fibromyalgia, chronic fatigue, diabetes and am still recovering from a mini stroke from less than two years ago? And it's been effing cold, even for here. Maybe it's time for some cheese with this whine, but seriously, people, I moved out here so that life would be a little more EASY to handle.
So much for the simple life. I am seriously contemplating, although it will take an extraordinary amount of effort and a considerable amount of time, starting the process of moving back to the Los Angeles area. I will never commit to that in the long term, I really quite dislike Los Angeles in fact. It is dirty, crowded, expensive and scary. I won't even talk about what I thought of the people when I first moved there. Number one son was born there and he has rose colored memories of it, so he is totally on board. But I just want some place that's warmer, or at least not freaking cold. I am only thinking about L.A. since we soon will have a narrow window of opportunity to spend time with our parents while they are still on this earth.
I feel I have completely deprived both sets of our parents from a relationship with our little one. Granted, we weren't planning on any more pregnancies, and I had already committed to moving out here when the rabbit died, but still. I love the whole extended family concept, and our parents don't suck. We both have our issues to be sure, but one thing we both agree on wholeheartedly is that the grandparent - grandchild relationship should be encouraged on all fronts. My own bio mom is here, and the only reason she is was so that she could be with us. She can't wait to go back to Cali, and the second we do, she will probably book the Concord to zip past us on our way.
It's such a difficult decision. DD is twentyone, and there is a good chance she may not want to come along. For sure the economy needs to straigthen out a little before I would even think about creating a new resume for DH and starting that whole networking process. The stability at this address has been really good for all of us, and three years was the top amount of time we ever spent at any home in L.A.
It also means probably less available services for the kids, and the adoption benefits for any potential kids are not likely going to be half as good. Granted we are some years away from considering adoption/foster care again, but still. I have a hard time letting go or those dreams and the relationships we have established here. Even those in the family who want to go have a hard time adjusting to change, it's hard to believe that someone like me would be considered the MOST flexible in our family.
When you stack all that up against wanting a relationship for the kids and the grandparents, well all the former stuff just sort of falls away. Afterall, we moved out here in large part to have the opportunity for me and the kids to be near MY grandmother for the last few years of her life, and there is no price you could put on that. Despite the struggles and challenges, I can't regret that time I got to have with her. I know for sure I would regret not having that time for my kids with my parents.
Sigh, didn't I promise an uplifting post? I lied.
Last month, I got up before 5 am (ok, a couple of those times I admit I was actually still awake) FIVE times to dig my husband's car and our not incredibly long driveway out of the snow before he would begin his thankless hour and a half commute to a not great paying but very steady in this crappy economy job. Did I mention I have fibromyalgia, chronic fatigue, diabetes and am still recovering from a mini stroke from less than two years ago? And it's been effing cold, even for here. Maybe it's time for some cheese with this whine, but seriously, people, I moved out here so that life would be a little more EASY to handle.
So much for the simple life. I am seriously contemplating, although it will take an extraordinary amount of effort and a considerable amount of time, starting the process of moving back to the Los Angeles area. I will never commit to that in the long term, I really quite dislike Los Angeles in fact. It is dirty, crowded, expensive and scary. I won't even talk about what I thought of the people when I first moved there. Number one son was born there and he has rose colored memories of it, so he is totally on board. But I just want some place that's warmer, or at least not freaking cold. I am only thinking about L.A. since we soon will have a narrow window of opportunity to spend time with our parents while they are still on this earth.
I feel I have completely deprived both sets of our parents from a relationship with our little one. Granted, we weren't planning on any more pregnancies, and I had already committed to moving out here when the rabbit died, but still. I love the whole extended family concept, and our parents don't suck. We both have our issues to be sure, but one thing we both agree on wholeheartedly is that the grandparent - grandchild relationship should be encouraged on all fronts. My own bio mom is here, and the only reason she is was so that she could be with us. She can't wait to go back to Cali, and the second we do, she will probably book the Concord to zip past us on our way.
It's such a difficult decision. DD is twentyone, and there is a good chance she may not want to come along. For sure the economy needs to straigthen out a little before I would even think about creating a new resume for DH and starting that whole networking process. The stability at this address has been really good for all of us, and three years was the top amount of time we ever spent at any home in L.A.
It also means probably less available services for the kids, and the adoption benefits for any potential kids are not likely going to be half as good. Granted we are some years away from considering adoption/foster care again, but still. I have a hard time letting go or those dreams and the relationships we have established here. Even those in the family who want to go have a hard time adjusting to change, it's hard to believe that someone like me would be considered the MOST flexible in our family.
When you stack all that up against wanting a relationship for the kids and the grandparents, well all the former stuff just sort of falls away. Afterall, we moved out here in large part to have the opportunity for me and the kids to be near MY grandmother for the last few years of her life, and there is no price you could put on that. Despite the struggles and challenges, I can't regret that time I got to have with her. I know for sure I would regret not having that time for my kids with my parents.
Sigh, didn't I promise an uplifting post? I lied.
Wednesday, February 25, 2009
why don't you kick a puppy
I'm so sick of hearing people bash the octuplets mom. Obviously she isn't quite in her right mind, who is that would do such a thing on purpose? Why are people so inflamed about one person who did something kind of stupid? Don't we have other things to worry about?
I'm not really sure what fertility treatments have to do with this at all; a fertile woman can still irresponsibly have fourteen children without a job or a partner helping raise them or any visible means of support. Having eight at once does increase the risk that they will end up with no parent at all, and is very likely to cost a small fortune in not only immediate medical treatment but lifetime care needs. But either way, haven't we seen parents act selfishly and irresponsibly for a very long time? I don't vilify this particular woman, the cold hard facts are that she couldn't have done this without the help of a not very wise doctor. If you want to hang an irresponsibility label on someone, well, there's the culprit as far as I'm concerned.
In my not so humble opinion, we are a whole country of instant gratification junkies with poor judgment. What's extremely off putting about this particular situation to me is the whole "kill your parents, then cry Orphan" aspect. Jon and Kate have CHURCHES sell tickets on their behalf for speaking engagements. The octuplets' mom now has a website for begging. Who can blame the public for being a little miffed about paying for her manicures? I can't remember the last time I had a leg wax. It would be more cost effective to become a lesbian. And holy crap, has anyone seen Jon and Kate's new freaking mansion?
And who defines what responsible means? I was in a very low risk category, my husband and I had two college degrees, two incomes and everything still turned out crappy. My health was obliterated by pregnancy and birth, my baby turned out to have autism, and my husband had to take off six months of work to care for both of us; we ended up declaring bankruptcy despite careful planning and supposedly good health insurance. We would likely have ended up in a homeless shelter without the charity of our families. But never once would I have considered asking them to house and care for my fourteen kids. The person I feel sorry for is octuplets' grandma. Followed by the kids, I guess, who I just can't imagine aren't going to be neglected in some way.
But whatever. Why not care about something that matters instead. You know, like finding a cure for autism. Or the lack of housing for adults with disabilities. Or the lack of decent housing for low income families. I mean what the h do we pay taxes for city planners for? Or offering rehab for pregnant persons. Or insisting that neutral third party agencies create I.E.P.'s, not the schools who have a financial conflict of interest that have to execute them. Or reducing prescription drug costs for seniors. Or the millions of unemployed people who are becoming homeless. I could go on for days about the things that we should REALLY be indignant about.
Sigh. I didn't think my blog would turn into a "rant only" zone. Something positive coming next time, I promise.
I'm not really sure what fertility treatments have to do with this at all; a fertile woman can still irresponsibly have fourteen children without a job or a partner helping raise them or any visible means of support. Having eight at once does increase the risk that they will end up with no parent at all, and is very likely to cost a small fortune in not only immediate medical treatment but lifetime care needs. But either way, haven't we seen parents act selfishly and irresponsibly for a very long time? I don't vilify this particular woman, the cold hard facts are that she couldn't have done this without the help of a not very wise doctor. If you want to hang an irresponsibility label on someone, well, there's the culprit as far as I'm concerned.
In my not so humble opinion, we are a whole country of instant gratification junkies with poor judgment. What's extremely off putting about this particular situation to me is the whole "kill your parents, then cry Orphan" aspect. Jon and Kate have CHURCHES sell tickets on their behalf for speaking engagements. The octuplets' mom now has a website for begging. Who can blame the public for being a little miffed about paying for her manicures? I can't remember the last time I had a leg wax. It would be more cost effective to become a lesbian. And holy crap, has anyone seen Jon and Kate's new freaking mansion?
And who defines what responsible means? I was in a very low risk category, my husband and I had two college degrees, two incomes and everything still turned out crappy. My health was obliterated by pregnancy and birth, my baby turned out to have autism, and my husband had to take off six months of work to care for both of us; we ended up declaring bankruptcy despite careful planning and supposedly good health insurance. We would likely have ended up in a homeless shelter without the charity of our families. But never once would I have considered asking them to house and care for my fourteen kids. The person I feel sorry for is octuplets' grandma. Followed by the kids, I guess, who I just can't imagine aren't going to be neglected in some way.
But whatever. Why not care about something that matters instead. You know, like finding a cure for autism. Or the lack of housing for adults with disabilities. Or the lack of decent housing for low income families. I mean what the h do we pay taxes for city planners for? Or offering rehab for pregnant persons. Or insisting that neutral third party agencies create I.E.P.'s, not the schools who have a financial conflict of interest that have to execute them. Or reducing prescription drug costs for seniors. Or the millions of unemployed people who are becoming homeless. I could go on for days about the things that we should REALLY be indignant about.
Sigh. I didn't think my blog would turn into a "rant only" zone. Something positive coming next time, I promise.
Sunday, February 22, 2009
Special Occasion
Family Ties
Today is my Grandmother's 70th birthday. She came to the United States from a small village in the Philippines. All four of her children went to school in the United States. School is where my dad met my mom, though he was originally born in the Philippines too. That makes me the first generation born through my dad’s line of the family in the United States. I am also the first grandchild to be born to my dad’s parents. My parents tell me all the time how happy my grandparents were when I was born.
I miss my grandmother so much because she means a lot to me; she was a big part of my life while I was growing up before we moved to Philadelphia. I wish I still lived near my grandmother so that I could see her as often as I could. My grandmother is so special because she used to baby sit me when I was little and take care of me when my mom went to work. I remember her reading a giant collection of Curious George stories to me for two straight hours. Sometimes my grandparents would take me to the mall and buy me pizza. Some of my favorite memories of my grandmother are when she made pancakes for me all the time. I hope someday soon we will move back to California so that I can see her and my grandfather more often. Soon, I will be old enough to go to college, and there are a lot of good universities in the Los Angeles area, so I think this dream might come true.
Today is my Grandmother's 70th birthday. She came to the United States from a small village in the Philippines. All four of her children went to school in the United States. School is where my dad met my mom, though he was originally born in the Philippines too. That makes me the first generation born through my dad’s line of the family in the United States. I am also the first grandchild to be born to my dad’s parents. My parents tell me all the time how happy my grandparents were when I was born.
I miss my grandmother so much because she means a lot to me; she was a big part of my life while I was growing up before we moved to Philadelphia. I wish I still lived near my grandmother so that I could see her as often as I could. My grandmother is so special because she used to baby sit me when I was little and take care of me when my mom went to work. I remember her reading a giant collection of Curious George stories to me for two straight hours. Sometimes my grandparents would take me to the mall and buy me pizza. Some of my favorite memories of my grandmother are when she made pancakes for me all the time. I hope someday soon we will move back to California so that I can see her and my grandfather more often. Soon, I will be old enough to go to college, and there are a lot of good universities in the Los Angeles area, so I think this dream might come true.
Friday, February 13, 2009
Fascination
One thing that really interests me is language. I don’t mean foreign languages, but rather, the method in which people use to express ideas. It really fascinates me how sounds that people make with their mouths can have meanings that are understood by people who hear it. Language is probably the best thing mankind has ever invented. I don’t where we would be if we didn’t have the ability to express our ideas to others. The only thing of which I can think is as good as it is written language. Written language allows us to record our thoughts as well as record history for future generations to remember. Without written language, we would most likely forget about our origins and who we are. Recording our thoughts allows us to see a pattern which helps us keep from making mistakes that were made in the past.
Thursday, February 12, 2009
Another school assignment
**MOTHER'S NOTE: People with asperger's often have what is referred to in the literature as an "elevated sense of justice," which is actually used as a diagnostic marker. It is in fact one of the reasons that I thought T might actually really have asperger's when we first started researching symptoms. The following is one of his school assignments from early on in the year, and he means every word of it. He was slightly more than fifteen when he wrote it. When I read it, I couldn't help but think that it sounds like a much younger kid who still has a sense of black and white when it comes to right and wrong, someone who hasn't yet started to attempt real deceit in the course of pursuing self interest. It's actually one of the things I find endearing in what is otherwise a condition that I mostly wish he didn't have.
Why is it important to be honest?
Being honest is important. There are many reasons for being honest. Being honest keeps us from lying to others, as lying just gets people in more trouble. For example, if a child did something bad and then lied to his parents about it, and then they found out it was a lie, they would most likely be more angry at the fact that they were lied to rather than what their child did. Lying also forces one to keep telling more lies to cover up previous lies. They’ll eventually be trapped with no way out other than to just tell the truth. Lying will also cause people to trust us less. Being dishonest almost always comes back to haunt you.
Being honest allows us to avoid these problems. Being honest allows us to be truthful to others and ourselves. It is also important when being honest to be careful not to hurt some else’s feelings. For example, if a friend came and asked you what you thought of their new clothes and you told them you thought that they were hideous, they would be really offended. You could instead tell them that your taste is different from their taste, and then you would be honest without hurting their feelings.
Why is it important to be honest?
Being honest is important. There are many reasons for being honest. Being honest keeps us from lying to others, as lying just gets people in more trouble. For example, if a child did something bad and then lied to his parents about it, and then they found out it was a lie, they would most likely be more angry at the fact that they were lied to rather than what their child did. Lying also forces one to keep telling more lies to cover up previous lies. They’ll eventually be trapped with no way out other than to just tell the truth. Lying will also cause people to trust us less. Being dishonest almost always comes back to haunt you.
Being honest allows us to avoid these problems. Being honest allows us to be truthful to others and ourselves. It is also important when being honest to be careful not to hurt some else’s feelings. For example, if a friend came and asked you what you thought of their new clothes and you told them you thought that they were hideous, they would be really offended. You could instead tell them that your taste is different from their taste, and then you would be honest without hurting their feelings.
Wednesday, February 11, 2009
A really good book that my mom suggested for me
Born On a Blue Day
I recently read the book, Born On A Blue Day, by Daniel Tammet, which is about a man who has Asperger’s Syndrome, like myself. It talks about his life growing up as well as his adulthood, mostly in regards to how he copes with being autistic. It was very interesting to me about how Daniel lived his life and how he now manages himself independently. It gives me a lot of hope for my own future. I was especially fascinated by the part where he talked about how he was really good at learning languages; I myself am really involved in learning languages.
Another thing in the book that really captivated me was how he was really good at expressing his ideas, which is something unusual for a lot of people with autism. This gives me more optimism for career prospects as I want to become a writer when I grow up. I also found several characteristics about Daniel that I could relate to, such as how he is sensitive to sounds and being touched. He also thinks literally and is puzzled when he hears someone use figurative speech; he does things that he doesn’t realize are not socially appropriate. Fortunately, he has found ways to cope. I myself am also trying to find ways to cope. This book for me is not just a story, it’s an inspiration.
I recently read the book, Born On A Blue Day, by Daniel Tammet, which is about a man who has Asperger’s Syndrome, like myself. It talks about his life growing up as well as his adulthood, mostly in regards to how he copes with being autistic. It was very interesting to me about how Daniel lived his life and how he now manages himself independently. It gives me a lot of hope for my own future. I was especially fascinated by the part where he talked about how he was really good at learning languages; I myself am really involved in learning languages.
Another thing in the book that really captivated me was how he was really good at expressing his ideas, which is something unusual for a lot of people with autism. This gives me more optimism for career prospects as I want to become a writer when I grow up. I also found several characteristics about Daniel that I could relate to, such as how he is sensitive to sounds and being touched. He also thinks literally and is puzzled when he hears someone use figurative speech; he does things that he doesn’t realize are not socially appropriate. Fortunately, he has found ways to cope. I myself am also trying to find ways to cope. This book for me is not just a story, it’s an inspiration.
Tuesday, February 10, 2009
Getting away from the world
When I want to get away from the world, I go into my own head where everything is peaceful and everything that bothers me does not exist. To get there, I sit in the corner of the room where I am isolated from everyone else and I think of things I like. I don’t always have to sit in the corner though, I can just sit anywhere and close my eyes, but it’s not as convenient because of the commotion made by everyone else in the room. Of course, I have headphones that I can put on and blast loud music in my ears to block out the sounds around me. After thinking about stuff I like, I end up in the place in my head where they are and I can enjoy myself there. The things I like to think about are usually the settings of my favorite stories, then, I get to live through the adventures of the favorite story book characters. Except, I usually do things differently than from what the main characters did, as well as I replace the supporting characters with my own; both of those make the story more interesting for me. I do not want to go through the exact same events that the characters from the original story did because I already read it and it would be boring for me. Although, sometimes I don’t do anything I my own little world and I just sit with my thoughts, and with that alone is perfect me for to get away from the world.
Thursday, February 5, 2009
Collaboration
Tonight my son had a homework assignment including writing a poem in a certain style. Composition is not his strong point, so we did a few practice exercises. T often needs a little extra demonstration and cueing before he absorbs something, he has a very low processing speed. But once he gets something, it usually sticks. Anyway, we were discussing using autism as a possible subject for this particular creative writing assignment (I am inducting him into my autism awareness army), and he was describing himself in comparison to "normal" people. Or at least what his perception of normal people is. Here is one of our "practice" poems as a result of this exercise:
sound is too loud
light is too bright
touch is too hard
shirts are too scratchy
needs I can’t describe
feelings I can’t explain
crowds are too many
motion is too much
that is how I am
that is autism
sound is too loud
light is too bright
touch is too hard
shirts are too scratchy
needs I can’t describe
feelings I can’t explain
crowds are too many
motion is too much
that is how I am
that is autism
Wednesday, February 4, 2009
I'm not dead yet
ok, this is supposed to be MY blog with MY writing, but this is just too funny not to share.
Stud Rooster
A farmer went out one day and bought a brand new stud rooster for his chicken coop. The new rooster struts over to the old rooster and says,
"OK old fart, time for you to retire."
The old rooster replies, "Come on, surely you cannot handle ALL of these chickens. Look what it has done to me. Can't you just let me have the two old hens over in the corner?" The young rooster says, "Beat it: You are washed up and I am taking over."
The old rooster says, "I tell you what, young stud. I will race you around the farmhouse. Whoever wins gets the exclusive domain over the entire chicken coop."
The young rooster laughs. "You know you don't stand a chance, old man. So, just to be fair, I will give you a head start."
The old rooster takes off running. About 15 seconds later the young rooster takes off running after him. They round the front porch of the farmhouse and the young rooster has closed the gap. He is only about 5 feet behind the old rooster and gaining fast.
The farmer, meanwhile, is sitting in his usual spot on the front porch when he sees the roosters running by. The Old Rooster is squawking and running as hard as he can. The Farmer grabs his shotgun and - BOOM - he blows the young rooster to bits. The farmer sadly shakes his head and says,
"Darn.....third gay rooster I bought this month."
Moral of this story?
Don't mess with the OLD FARTS - age, skill, wisdom, and a little treachery will always overcome youth and arrogance!
Stud Rooster
A farmer went out one day and bought a brand new stud rooster for his chicken coop. The new rooster struts over to the old rooster and says,
"OK old fart, time for you to retire."
The old rooster replies, "Come on, surely you cannot handle ALL of these chickens. Look what it has done to me. Can't you just let me have the two old hens over in the corner?" The young rooster says, "Beat it: You are washed up and I am taking over."
The old rooster says, "I tell you what, young stud. I will race you around the farmhouse. Whoever wins gets the exclusive domain over the entire chicken coop."
The young rooster laughs. "You know you don't stand a chance, old man. So, just to be fair, I will give you a head start."
The old rooster takes off running. About 15 seconds later the young rooster takes off running after him. They round the front porch of the farmhouse and the young rooster has closed the gap. He is only about 5 feet behind the old rooster and gaining fast.
The farmer, meanwhile, is sitting in his usual spot on the front porch when he sees the roosters running by. The Old Rooster is squawking and running as hard as he can. The Farmer grabs his shotgun and - BOOM - he blows the young rooster to bits. The farmer sadly shakes his head and says,
"Darn.....third gay rooster I bought this month."
Moral of this story?
Don't mess with the OLD FARTS - age, skill, wisdom, and a little treachery will always overcome youth and arrogance!
Monday, January 26, 2009
my mom made me do this survey
Hi, I haven't posted in a long time. I have no idea who is reading this anyway. It was supposed to be for my relatives and friends, but we haven't told any of them about it yet. I am also supposed to be learning creative writing skills by doing this, but I guess I can't do that either if I never post. So.
1. Favorite color?
Blue is first, black is a close second, then white, then red, then green, then purple, then grey.
2. Favorite school subject?
Foreign languages, I like learning new ways to talk, even though I don’t talk much.
3. Dogs or cats?
Both. Dogs are very friendly and loyal, they can sometimes be annoying like when they bark a lot or won’t stop pestering you. Cats are independent; don’t need you so much, but when you do feel like interacting with them, they probably will try to get away.
4. You are given a bunk bed. Do you sleep top or bottom?
Top, I like the isolation it gives me.
5. Favorite TV show?
That’s a hard one; I can’t pick one. So, I’m going to give my top 3 (in no particular order). Number 1: Still Standing, because it’s still funny even if you start watching halfway into the episode. Number 2: Fawlty Towers, because it has a different style of humor than from what I’m used to. Number 3: Death Note, because it reminds me of Sherlock Holmes. It’s an anime. I watched the whole series on youtube, I don’t know where to find it on tv now. That’s all I can think of for now.
6. Favorite movies?
Again, I am going to give a top favorite list. Number 1: A Dog’s Breakfast, because it very funny. Number 2: The Bird with the Crystal Plumage, because it kept me on the edge of my seat, until I fell off. Number 3: Psycho, it was thrilling. There are a lot more. Like The Bad Seed.
7. Favorite books?
Psycho – I liked it better than the movie, I read it afterward. And Then There Were None, Agatha Christie. The Chronicles of Narnia series was interesting. Calvin and Hobbes, all of them.
8. Bookstores or video stores?
Both. Actually, libraries give me both books and videos. Gamestop for actual video games.
9. Favorite video game if you’re a gamer:
I like a lot of horror video games, like Resident Evil, Silent Hill and Clock Tower.
10. IM or texting or voice?
None of the above. I don’t have a cell phone, I hate talking on any phone, and I don’t even like myspace, much less instant messaging. I will email though. Eventually. Don’t expect a quick response. When I do stuff with people, I prefer to do it in person.
11. Myspace or Facebook?
I don’t even know what Facebook is. I only have a myspace account because my mom made me. She’s evil.
12. Comic books or novels?
Both. LOVE both.
13. Play a musical instrument?
Not really no. Played the recorder for a little while until the teacher stopped giving lessons. I would like to learn how to play a keyboard.
14. Play a sport? Or just spectate?
Neither really. I don’t care much for team stuff, but I will play when my church group does something. I liked basketball when I tried it. Skating and cycling are good, no teams needed.
15. Couch potato or energetic?
Couch potato. Used to be energetic. Have been tired ever since appendicitis a few years ago.
16. Artist or scientist?
Artist. Love comic book drawing. Like technology too. Not as interested in nature anymore.
17. Mountains or beach? Snow or sand?
Beach, although I haven’t been there in forever. Mountains are good too, nice and isolated, bonus points if there’s a pool.
18. Sweats or G.Q.?
Sweats. And almost nothing else. Don’t even like jeans. Really don’t like suits. Would prefer shorts, made out of fleece. I wear very thin cotton t shirts most of the time.
19. Cruise ship or RV road trip?
Cruise ship, there’s more room than on an RV. Besides, I get carsick very easily. Guess that could happen on a boat too.
20. Favorite band/music artist or song?
Rock and techno music.
21. Do you buy more stuff from Amazon or EBay?
I prefer Amazon, you don’t have to compete. I don’t like shopping.
22. Favorite internet websites?
TONS of them. I go everywhere. Sites with web comics usually. YouTube and Deviant Art are just two of my favorites.
23. Do you believe in Santa Claus?
Don’t care if he’s real or not as long as my presents are under the tree.
24. What is the funniest inside family joke at your house?
Whenever someone passes gas near our dog, she gets up and leaves the room. Quickly. If you don’t want to wait for your dinner to digest, you can just make a raspberry and that works just as well.
25. What is the most important characteristic you look for in another person when you meet?
If they are pleasant to be around. I don’t like grouches.
Last but not least, pick something very interesting or unusual about yourself:
I’m autistic, but I don’t like people like me. They usually get on my nerves. I treat everyone equally, so I usually end up insulting them, also because I don’t think when I speak. I don’t take differences into account; I don’t discriminate when I should; so I sometimes offend when I don’t mean to.
1. Favorite color?
Blue is first, black is a close second, then white, then red, then green, then purple, then grey.
2. Favorite school subject?
Foreign languages, I like learning new ways to talk, even though I don’t talk much.
3. Dogs or cats?
Both. Dogs are very friendly and loyal, they can sometimes be annoying like when they bark a lot or won’t stop pestering you. Cats are independent; don’t need you so much, but when you do feel like interacting with them, they probably will try to get away.
4. You are given a bunk bed. Do you sleep top or bottom?
Top, I like the isolation it gives me.
5. Favorite TV show?
That’s a hard one; I can’t pick one. So, I’m going to give my top 3 (in no particular order). Number 1: Still Standing, because it’s still funny even if you start watching halfway into the episode. Number 2: Fawlty Towers, because it has a different style of humor than from what I’m used to. Number 3: Death Note, because it reminds me of Sherlock Holmes. It’s an anime. I watched the whole series on youtube, I don’t know where to find it on tv now. That’s all I can think of for now.
6. Favorite movies?
Again, I am going to give a top favorite list. Number 1: A Dog’s Breakfast, because it very funny. Number 2: The Bird with the Crystal Plumage, because it kept me on the edge of my seat, until I fell off. Number 3: Psycho, it was thrilling. There are a lot more. Like The Bad Seed.
7. Favorite books?
Psycho – I liked it better than the movie, I read it afterward. And Then There Were None, Agatha Christie. The Chronicles of Narnia series was interesting. Calvin and Hobbes, all of them.
8. Bookstores or video stores?
Both. Actually, libraries give me both books and videos. Gamestop for actual video games.
9. Favorite video game if you’re a gamer:
I like a lot of horror video games, like Resident Evil, Silent Hill and Clock Tower.
10. IM or texting or voice?
None of the above. I don’t have a cell phone, I hate talking on any phone, and I don’t even like myspace, much less instant messaging. I will email though. Eventually. Don’t expect a quick response. When I do stuff with people, I prefer to do it in person.
11. Myspace or Facebook?
I don’t even know what Facebook is. I only have a myspace account because my mom made me. She’s evil.
12. Comic books or novels?
Both. LOVE both.
13. Play a musical instrument?
Not really no. Played the recorder for a little while until the teacher stopped giving lessons. I would like to learn how to play a keyboard.
14. Play a sport? Or just spectate?
Neither really. I don’t care much for team stuff, but I will play when my church group does something. I liked basketball when I tried it. Skating and cycling are good, no teams needed.
15. Couch potato or energetic?
Couch potato. Used to be energetic. Have been tired ever since appendicitis a few years ago.
16. Artist or scientist?
Artist. Love comic book drawing. Like technology too. Not as interested in nature anymore.
17. Mountains or beach? Snow or sand?
Beach, although I haven’t been there in forever. Mountains are good too, nice and isolated, bonus points if there’s a pool.
18. Sweats or G.Q.?
Sweats. And almost nothing else. Don’t even like jeans. Really don’t like suits. Would prefer shorts, made out of fleece. I wear very thin cotton t shirts most of the time.
19. Cruise ship or RV road trip?
Cruise ship, there’s more room than on an RV. Besides, I get carsick very easily. Guess that could happen on a boat too.
20. Favorite band/music artist or song?
Rock and techno music.
21. Do you buy more stuff from Amazon or EBay?
I prefer Amazon, you don’t have to compete. I don’t like shopping.
22. Favorite internet websites?
TONS of them. I go everywhere. Sites with web comics usually. YouTube and Deviant Art are just two of my favorites.
23. Do you believe in Santa Claus?
Don’t care if he’s real or not as long as my presents are under the tree.
24. What is the funniest inside family joke at your house?
Whenever someone passes gas near our dog, she gets up and leaves the room. Quickly. If you don’t want to wait for your dinner to digest, you can just make a raspberry and that works just as well.
25. What is the most important characteristic you look for in another person when you meet?
If they are pleasant to be around. I don’t like grouches.
Last but not least, pick something very interesting or unusual about yourself:
I’m autistic, but I don’t like people like me. They usually get on my nerves. I treat everyone equally, so I usually end up insulting them, also because I don’t think when I speak. I don’t take differences into account; I don’t discriminate when I should; so I sometimes offend when I don’t mean to.
Saturday, January 24, 2009
personal history survey
Ok, this is something innocuous while I continue to contemplate the future of my blog. One of my dumbass young "friends" on myspace sent me this awhile ago, and I might as well do SOMETHING while I'm still considering heavy stuff. Thanks for the push, Torina. I have asked three people their advice/opinions, and all three were kind enough to send me a response, and I still need to ponder awhile more. But in the meantime.....
personal history survey
place of birth?
Near Philadelphia. Who cares? Freaking identity theft stalkers, that's who.
what is your first conscious memory?
Jumping on my parents' bed while my dad was reading a newspaper on the toilet in the bathroom on the otherside of the room with the door open. When I told him about this a long time ago, he insists he couldn't have been USING the toilet, was probably just escaping the coffee klatch mom had in the living room. Knowing him, I believe it. Mr. Anal Retentive wouldn't have actually used a bathroom with a witness present, he would have locked the door.
state of your parents’ union?
Well, they were married when I was born, although it was the second time they had married each other. Gluttons for punishment I think.
remember anything about your first home?
Well, I was there for fourteen freaking years, so I say yes. It was a rancher on an acre of land with the house perched on a hilltop that made for GREAT sledding. Too bad I can't stand the freaking snow now.
did you have pets as a child?
A succession of dogs. The first I loved and was hit by the jackass neighbor's car who went five million miles per hour in an extremely residential dead end street. It could have easily been one of us kids instead. We mourned the dog horribly. Then got two more. All three had several litters of puppies (we were bad environmentalists then. Well worse, anyway).
biggest hobby?
Um, does reading count? I was a serious bibliophile at a very young age. I climbed trees a great deal.
music or sports?
both I guess. I loved the piano, but didn't take real lessons until like um eleven? twelve? I loved riding my bike, but I wasn't much for team sports. or teams. oo, wait, ping pong fanatic. WAY back in the day.
childhood bullies?
Yeah, Kurt at the top of the hill. Probably picked on me because my older brothers kicked his ass on several memorable occasions. I'm sure he's a cool adult now. There were others at school too, but I forget. I think the girls were scarier than the boys.
favorite childhood book?
probably the Ramona the Pest series. There were so many. Madeleine L'Engle when I was a little older.
first best friend?
Still is!! Lisa the Great. Lived across the street. Knew me in utero. Hardly get to see her now that I moved to the sticks. Bad me.
favorite elementary school teacher and subject?
My kindergarten teacher sticks in my mind as the kindest/sweetest, Mrs Rice. I think I know all the rest - Kinderman, Hallman, Walters, Feist, Gradwell, um, Swa-something. Favorite subject back then - probably reading. Getting to go to the library. Hated gym, was picked on too much. Failed math, I think.
best subject in high school?
Language arts? Math? I can tell you what I LIKED the most: ceramics. Didn't like gym still, but was excused by extremely sensitive laid back track guy who let me and a friend go work out with the football team in the weight room everyday. Somebody tell me WHY I found THAT less traumatizing?
extracurricular?
Was not a band twinkie, or cheerleader, or any crap like that. Was actually kind of antisocial. Started joining clubs my second year of HS for purposes of plumping transcript for college admission in order to get the h out of my household. Admissions application question: why do you want to go to our school? Truthful answer: must escape insane parents NOW. YOUR school has nothing to do with it.
first dance?
Don't think I ever did. No wait, does two proms count? Don't believe we did any dancing though.
first date?
not quite remembering. Probably with first real boyfriend.
first kiss?
With boy named David at Junior Achievement conference in San Francisco. I had gum in my mouth. He stuck his tongue in it. Oops.
when did you first get a driver’s license?
I think eighteen. I was TERRIFIED to drive. Might have been permit at sixteen, license at seventeen, didn't drive until eighteen.
first car was?
a blue 1981 Chevette, manual drive. Boy was that fun my first time on the freeway, during rush hour, in Los Angeles.
at what age did you have your first significant romantic relationship?
I see where this is leading, and I'm going to delete the next question. But anyway, I was fifteen and had a steady boyfriend that I dated for two and a half years. He was awesome. It made high school more bearable.
biggest trouble you got into during HS (or earlier?)
Probably when I was in the woods with my brother and his friends who were smoking pot. I wanted to come along for the walk. We went behind a church (stupid idiots) and they called the cops. We ran like hell, and they didn't catch us. Once I sat in the car while some of my friends T.P'd somebody's parents' house that they were pissed at. Also, I borrowed a key from one of the ladies in the admin office and went into the Dean's office right before there was a big standardized test administered. Holy hell broke loose that I might have compromised the whole school. I almost pissed my pants and came close to getting an ulcer. I sobbed in a bathroom for a half hour. And once my parents came home while my boyfriend was over at night(no, he wasn't supposed to be there) and I had to shoo him out the back door before they came in the front. I can't pick just one.
did you take a college entrance exam, and do you still remember the scores?
I know I took the SAT's, and my scores were 530 english (which shocked me b/c it was low) and 690 math (which shocked me b/c it was high). This was back when a perfect score in each was 800. Now I think they are 1200 in each category. I also took the Achievement tests? The scores were similar, I think.
class rank?
OMG, I have no idea. It was in the top ten percent. Possibly top five. What difference does that make if you have a low population in your particular class or if they are a big bunch of losers? it doesn't proove anything. There were almost 500 seniors the year I graduated, which was back in the dark ages.
H.S. diploma/College degree?
Yes and yes. Graduated high school at sixteen, didn't graduate college until 23. Just a bachelor's though. Grad school is not permanently out of reach.
first time you moved away from home, and RUNNING away doesn’t count…
I started college at sixteen, just a couple months before I turned seventeen, and I moved into the dorms. I did NOT rush a soroirity.
first job?
Sales Associate at a then major department store which since went out of business forever even though they had been around since 76 trombones led the big parade....
most interesting job?
probably working in the "skin shop." It was a talent agency for strippers and clowns and other party entertainment.
first deliberate career/field choice?
well I majored in human resources management for a reason. That's where I ended up. I should have majored in social work or nursing instead. But I don't regret it.
first baby/child?
I popped one out at 26. I had an early miscarriage two years before. It still depresses me.
first husband?
Strangely enough, I managed to get married BEFORE I got pregnant! Only dumb luck though. Let's see, I was 23, he was 26. We've been together, including our first date, for 21 years.
Probably I covered this stuff in my "Fifty things about me" other blog, or should have just added it there. And who is the bigger dumbass, the one who fills out this survey, or the one who copies the survey from the first dumbass, insults said dumbass, and then proceeds to fill out the survey herself? Oy.
personal history survey
place of birth?
Near Philadelphia. Who cares? Freaking identity theft stalkers, that's who.
what is your first conscious memory?
Jumping on my parents' bed while my dad was reading a newspaper on the toilet in the bathroom on the otherside of the room with the door open. When I told him about this a long time ago, he insists he couldn't have been USING the toilet, was probably just escaping the coffee klatch mom had in the living room. Knowing him, I believe it. Mr. Anal Retentive wouldn't have actually used a bathroom with a witness present, he would have locked the door.
state of your parents’ union?
Well, they were married when I was born, although it was the second time they had married each other. Gluttons for punishment I think.
remember anything about your first home?
Well, I was there for fourteen freaking years, so I say yes. It was a rancher on an acre of land with the house perched on a hilltop that made for GREAT sledding. Too bad I can't stand the freaking snow now.
did you have pets as a child?
A succession of dogs. The first I loved and was hit by the jackass neighbor's car who went five million miles per hour in an extremely residential dead end street. It could have easily been one of us kids instead. We mourned the dog horribly. Then got two more. All three had several litters of puppies (we were bad environmentalists then. Well worse, anyway).
biggest hobby?
Um, does reading count? I was a serious bibliophile at a very young age. I climbed trees a great deal.
music or sports?
both I guess. I loved the piano, but didn't take real lessons until like um eleven? twelve? I loved riding my bike, but I wasn't much for team sports. or teams. oo, wait, ping pong fanatic. WAY back in the day.
childhood bullies?
Yeah, Kurt at the top of the hill. Probably picked on me because my older brothers kicked his ass on several memorable occasions. I'm sure he's a cool adult now. There were others at school too, but I forget. I think the girls were scarier than the boys.
favorite childhood book?
probably the Ramona the Pest series. There were so many. Madeleine L'Engle when I was a little older.
first best friend?
Still is!! Lisa the Great. Lived across the street. Knew me in utero. Hardly get to see her now that I moved to the sticks. Bad me.
favorite elementary school teacher and subject?
My kindergarten teacher sticks in my mind as the kindest/sweetest, Mrs Rice. I think I know all the rest - Kinderman, Hallman, Walters, Feist, Gradwell, um, Swa-something. Favorite subject back then - probably reading. Getting to go to the library. Hated gym, was picked on too much. Failed math, I think.
best subject in high school?
Language arts? Math? I can tell you what I LIKED the most: ceramics. Didn't like gym still, but was excused by extremely sensitive laid back track guy who let me and a friend go work out with the football team in the weight room everyday. Somebody tell me WHY I found THAT less traumatizing?
extracurricular?
Was not a band twinkie, or cheerleader, or any crap like that. Was actually kind of antisocial. Started joining clubs my second year of HS for purposes of plumping transcript for college admission in order to get the h out of my household. Admissions application question: why do you want to go to our school? Truthful answer: must escape insane parents NOW. YOUR school has nothing to do with it.
first dance?
Don't think I ever did. No wait, does two proms count? Don't believe we did any dancing though.
first date?
not quite remembering. Probably with first real boyfriend.
first kiss?
With boy named David at Junior Achievement conference in San Francisco. I had gum in my mouth. He stuck his tongue in it. Oops.
when did you first get a driver’s license?
I think eighteen. I was TERRIFIED to drive. Might have been permit at sixteen, license at seventeen, didn't drive until eighteen.
first car was?
a blue 1981 Chevette, manual drive. Boy was that fun my first time on the freeway, during rush hour, in Los Angeles.
at what age did you have your first significant romantic relationship?
I see where this is leading, and I'm going to delete the next question. But anyway, I was fifteen and had a steady boyfriend that I dated for two and a half years. He was awesome. It made high school more bearable.
biggest trouble you got into during HS (or earlier?)
Probably when I was in the woods with my brother and his friends who were smoking pot. I wanted to come along for the walk. We went behind a church (stupid idiots) and they called the cops. We ran like hell, and they didn't catch us. Once I sat in the car while some of my friends T.P'd somebody's parents' house that they were pissed at. Also, I borrowed a key from one of the ladies in the admin office and went into the Dean's office right before there was a big standardized test administered. Holy hell broke loose that I might have compromised the whole school. I almost pissed my pants and came close to getting an ulcer. I sobbed in a bathroom for a half hour. And once my parents came home while my boyfriend was over at night(no, he wasn't supposed to be there) and I had to shoo him out the back door before they came in the front. I can't pick just one.
did you take a college entrance exam, and do you still remember the scores?
I know I took the SAT's, and my scores were 530 english (which shocked me b/c it was low) and 690 math (which shocked me b/c it was high). This was back when a perfect score in each was 800. Now I think they are 1200 in each category. I also took the Achievement tests? The scores were similar, I think.
class rank?
OMG, I have no idea. It was in the top ten percent. Possibly top five. What difference does that make if you have a low population in your particular class or if they are a big bunch of losers? it doesn't proove anything. There were almost 500 seniors the year I graduated, which was back in the dark ages.
H.S. diploma/College degree?
Yes and yes. Graduated high school at sixteen, didn't graduate college until 23. Just a bachelor's though. Grad school is not permanently out of reach.
first time you moved away from home, and RUNNING away doesn’t count…
I started college at sixteen, just a couple months before I turned seventeen, and I moved into the dorms. I did NOT rush a soroirity.
first job?
Sales Associate at a then major department store which since went out of business forever even though they had been around since 76 trombones led the big parade....
most interesting job?
probably working in the "skin shop." It was a talent agency for strippers and clowns and other party entertainment.
first deliberate career/field choice?
well I majored in human resources management for a reason. That's where I ended up. I should have majored in social work or nursing instead. But I don't regret it.
first baby/child?
I popped one out at 26. I had an early miscarriage two years before. It still depresses me.
first husband?
Strangely enough, I managed to get married BEFORE I got pregnant! Only dumb luck though. Let's see, I was 23, he was 26. We've been together, including our first date, for 21 years.
Probably I covered this stuff in my "Fifty things about me" other blog, or should have just added it there. And who is the bigger dumbass, the one who fills out this survey, or the one who copies the survey from the first dumbass, insults said dumbass, and then proceeds to fill out the survey herself? Oy.
Saturday, January 3, 2009
What’s my point; not sure I have one.
With the advent of the new year, and having now been on blogger for the last six months or so, I am now giving more serious consideration to going public, but I just don’t feel sure about it. There are three main issues I’m thinking about:
1. I’m boring. And that’s the truth. I thought I would discuss aspects of the kid’s lives on a more regular basis; i.e. what symptoms of autism and other developmental disabilities are like, how they impact our daily routines and family life. That was supposed to kill two birds with one stone: to raise autism/disability awareness, and to let our extended family and friends keep up with us a little more. I know the grandparents are really missing out, and yet I feel like I’m not writing for them even though that was my intention. I don’t post near enough, and at the end of the day, even though there are lots of things that happen that they might find interesting, I’m just so tired. What inspires my get-up-and-go is when I feel passionately about some social issue, like prop 8 (which I deleted already, don’t bother trying to find it, I used too many four letter words), not the mundane details of our banal existence. And I am often inspired by things that really tick me off. I mean, who wants to read that stuff? What a total downer. I should try for shorter (HA!) more frequent posts. I just don’t find myself having the self discipline or energy to do it. Plus I guess that I don’t think I can be horribly entertaining with short frequent posts. Sigh. Our insecurities always undo us.
2. My skills. I thought after six months or so, I would absorb the ups and downs, ins and outs of the technology. WRONG. I have read a lot of other people’s blogs, I have looked at a lot of neat widgets, I have spent a lot of time studying blog “etiquette,” but I don’t think my education in this area is near enough. I would think there is a way to remedy this, like maybe I need to investigate formal (or even informal) training on the subject. There is a certain irony in that I originally was a computer science major at the university, a programmer, to be exact. And now I don’t have a clue. I expected that my reasonable intelligence level would eventually overcome this obstacle, but, not yet. Work in progress, I guess. I am reasonably insecure about my writing skills too, but I don’t give a rat’s butt about that. I have blogging friends and family members who are way more talented than I am, but this is not a talent contest, and I have just as much value and contribution to make. I just wish I knew what the hell I was doing with the technology.
3. PRIVACY. This is an issue in so many different ways for not only me, but my family members, and even third parties. If I’m going to be asserting my opinion in cyber space, do I have a right to keep some of my privacy? If I was writing a newspaper column (a renegade one no less, on a flyer jammed into the middle of the newsprint pages), do I have a reasonable expectation of privacy? I feel like public blogging opens me up to criticism I’m not ready to deal with. There seems to be a definite death of manners and common courtesy on the internet. How much of it can I take? My content of late has rather than personal instead been about my relatively uneducated opinion on certain autism and other social issues. Even then, I think to myself, “who am I to have a written public opinion on Terri Schiavo? Hasn’t her family been through enough pain than to suffer the careless treatment of strangers discussing her situation as water cooler fodder? True, I am arguing in their favor, but it’s not like they asked me.”
I don’t think I realized how insecure I was until I started writing this blog. I can visualize back to junior high school when those kind of feelings reached peak levels, and I think what I feel now is so miniscule in comparison, so as to be virtually disappeared. Perhaps cyber space now is the new frontier of peer pressure and social oversensitivity. The kind of cyber bullying I have witnessed has been excruciating to see.
And then if I’m going to have an opinion, and presumably come under attack, don’t I need to be afraid of the weirdoes coming out of the woodwork? I have small (and large), vulnerable children, and we are out and about in our community. Besides being afraid for their safety, how about their rights to privacy? For instance, I would love to talk about OCD girl more. I think awareness on that topic is very low. But she is horribly self conscious. Even if I’m not concerned about stranger danger, how about keeping the details of her personal life private from family members and friends?
This has been a problem for us in places like church and school. She needed help, but how to ask for it if she doesn’t want anyone to know what the problem is? Thank goodness my son is a little less self conscious, he needs an awful lot of help, and the only way he is going to get it is by being as visible and assertive as possible. He LIKES wearing his autism shirt, because in the absence of a visible cue (such as a cast on a broken limb or leg braces or the physical characteristics of Down’s syndrome), he doesn’t have to try to explain himself quite so much. I fear DD will have a very circumscribed life because the only thing more hindering than her disability is her desire that no one know about it to the point where she can’t work on it and start to get past it.
Also, there have even been times when I wanted to talk about something in my struggle with the kids and I feel like I can’t talk about casual acquaintances or friends and other family members unless I remain semi anonymous or even totally anonymous. I had an absolutely horrific conversation with a staff member of an institution from where I was trying to get services for one of my kids, and even though this other person doesn’t like me and said rotten things, I still felt like out of respect for her privacy that I shouldn’t repeat the details of the conversation, not to mention worrying about retribution against my child in the form of a lack of cooperation from this person in the future. Yet it was an important step in my journey, the relating of which is supposed to be one of my goals in blogging.
My own growth and path is so closely connected with so many other people that I don’t know how to discuss it and leave them their privacy. One thing I found very helpful was reading the description of the relationships between other wives and their asperger’s husbands, it’s a virtual support group. And if I was to come out of the blogging closet, I would be revealing very intimate details on the relationship between my husband and me (who is, by the way, a very fabulous guy). He is generally very supportive, but what if he doesn’t feel like sharing his personal struggles with the World Wide Web? And suppose his co workers or other professional peers were to stumble across my blog? I have already deleted one post that I wrote around our wedding anniversary this year; it disclosed what may have been some important information for someone else needing empathy in a similar situation. It would have definitely been progress towards my goal of spreading autism awareness. But do I have the right, even with his blessing? I would love to write tributes to all of my parents, and some other mentors, but in order to do so, will I have to completely whitewash everything? If I don’t include the bad with the good, how useful will it be? I just have not been able to reconcile those questions yet; I guess it’s time to perhaps ask some experienced bloggers for their opinions.
1. I’m boring. And that’s the truth. I thought I would discuss aspects of the kid’s lives on a more regular basis; i.e. what symptoms of autism and other developmental disabilities are like, how they impact our daily routines and family life. That was supposed to kill two birds with one stone: to raise autism/disability awareness, and to let our extended family and friends keep up with us a little more. I know the grandparents are really missing out, and yet I feel like I’m not writing for them even though that was my intention. I don’t post near enough, and at the end of the day, even though there are lots of things that happen that they might find interesting, I’m just so tired. What inspires my get-up-and-go is when I feel passionately about some social issue, like prop 8 (which I deleted already, don’t bother trying to find it, I used too many four letter words), not the mundane details of our banal existence. And I am often inspired by things that really tick me off. I mean, who wants to read that stuff? What a total downer. I should try for shorter (HA!) more frequent posts. I just don’t find myself having the self discipline or energy to do it. Plus I guess that I don’t think I can be horribly entertaining with short frequent posts. Sigh. Our insecurities always undo us.
2. My skills. I thought after six months or so, I would absorb the ups and downs, ins and outs of the technology. WRONG. I have read a lot of other people’s blogs, I have looked at a lot of neat widgets, I have spent a lot of time studying blog “etiquette,” but I don’t think my education in this area is near enough. I would think there is a way to remedy this, like maybe I need to investigate formal (or even informal) training on the subject. There is a certain irony in that I originally was a computer science major at the university, a programmer, to be exact. And now I don’t have a clue. I expected that my reasonable intelligence level would eventually overcome this obstacle, but, not yet. Work in progress, I guess. I am reasonably insecure about my writing skills too, but I don’t give a rat’s butt about that. I have blogging friends and family members who are way more talented than I am, but this is not a talent contest, and I have just as much value and contribution to make. I just wish I knew what the hell I was doing with the technology.
3. PRIVACY. This is an issue in so many different ways for not only me, but my family members, and even third parties. If I’m going to be asserting my opinion in cyber space, do I have a right to keep some of my privacy? If I was writing a newspaper column (a renegade one no less, on a flyer jammed into the middle of the newsprint pages), do I have a reasonable expectation of privacy? I feel like public blogging opens me up to criticism I’m not ready to deal with. There seems to be a definite death of manners and common courtesy on the internet. How much of it can I take? My content of late has rather than personal instead been about my relatively uneducated opinion on certain autism and other social issues. Even then, I think to myself, “who am I to have a written public opinion on Terri Schiavo? Hasn’t her family been through enough pain than to suffer the careless treatment of strangers discussing her situation as water cooler fodder? True, I am arguing in their favor, but it’s not like they asked me.”
I don’t think I realized how insecure I was until I started writing this blog. I can visualize back to junior high school when those kind of feelings reached peak levels, and I think what I feel now is so miniscule in comparison, so as to be virtually disappeared. Perhaps cyber space now is the new frontier of peer pressure and social oversensitivity. The kind of cyber bullying I have witnessed has been excruciating to see.
And then if I’m going to have an opinion, and presumably come under attack, don’t I need to be afraid of the weirdoes coming out of the woodwork? I have small (and large), vulnerable children, and we are out and about in our community. Besides being afraid for their safety, how about their rights to privacy? For instance, I would love to talk about OCD girl more. I think awareness on that topic is very low. But she is horribly self conscious. Even if I’m not concerned about stranger danger, how about keeping the details of her personal life private from family members and friends?
This has been a problem for us in places like church and school. She needed help, but how to ask for it if she doesn’t want anyone to know what the problem is? Thank goodness my son is a little less self conscious, he needs an awful lot of help, and the only way he is going to get it is by being as visible and assertive as possible. He LIKES wearing his autism shirt, because in the absence of a visible cue (such as a cast on a broken limb or leg braces or the physical characteristics of Down’s syndrome), he doesn’t have to try to explain himself quite so much. I fear DD will have a very circumscribed life because the only thing more hindering than her disability is her desire that no one know about it to the point where she can’t work on it and start to get past it.
Also, there have even been times when I wanted to talk about something in my struggle with the kids and I feel like I can’t talk about casual acquaintances or friends and other family members unless I remain semi anonymous or even totally anonymous. I had an absolutely horrific conversation with a staff member of an institution from where I was trying to get services for one of my kids, and even though this other person doesn’t like me and said rotten things, I still felt like out of respect for her privacy that I shouldn’t repeat the details of the conversation, not to mention worrying about retribution against my child in the form of a lack of cooperation from this person in the future. Yet it was an important step in my journey, the relating of which is supposed to be one of my goals in blogging.
My own growth and path is so closely connected with so many other people that I don’t know how to discuss it and leave them their privacy. One thing I found very helpful was reading the description of the relationships between other wives and their asperger’s husbands, it’s a virtual support group. And if I was to come out of the blogging closet, I would be revealing very intimate details on the relationship between my husband and me (who is, by the way, a very fabulous guy). He is generally very supportive, but what if he doesn’t feel like sharing his personal struggles with the World Wide Web? And suppose his co workers or other professional peers were to stumble across my blog? I have already deleted one post that I wrote around our wedding anniversary this year; it disclosed what may have been some important information for someone else needing empathy in a similar situation. It would have definitely been progress towards my goal of spreading autism awareness. But do I have the right, even with his blessing? I would love to write tributes to all of my parents, and some other mentors, but in order to do so, will I have to completely whitewash everything? If I don’t include the bad with the good, how useful will it be? I just have not been able to reconcile those questions yet; I guess it’s time to perhaps ask some experienced bloggers for their opinions.
Wednesday, December 31, 2008
Are my children worthy to take up space?
So continuing with the theme of the last post, I found a new blog of a young adult graduate student with asperger's who recently discussed the issue of genetic prenatal testing and austism. She spoke quite elegantly about how it made her feel to be in a position to have to fight for her right to merely exist. She is pursuing a career in advocacy, and I feel lucky to know that someone like her not only exists, but will be fighting for my children.
I again apologize for my lack of technology skills, but here is a link you can cut and paste if you are interested in reading a very eloquent essay on the subject. My feelings, I fear will be expressed far less so, but my comment is underneath. My apologies to Amy for not asking her permission to track back. I know I will figure out how to do it eventually.
http://minikitkatgirl.blogspot.com/search/label/prenatal%20testing
What a horrifying thought that my two children with AS should not exist. I have to fight hard enough to get appopriate education for them without having also to justify whether they have enough value in this world to be allowed to breathe.
And I am one of the lucky ones. My children will most likely go to college, own property, have families of their own. And while it true that the world would be unlikely tobe able to sustain supporting individuals who weren't eventually self sufficient if their number grew to significant proportions of the population, I believe that is merely a wake up call for us to discover causes and clean up our toxic environments rather than a rush to euthanization of "imperfect" fetuses.
Using that kind of logic, should we consider an age at which all the elderly be euthanized because they are no longer able to care for themselves and may become a burden on their children eventually?
As with Down Syndrome, you can't even know a child's potential until after they are born and well into adulthood, whether they are on the spectrum or neurotypical or have some other kind of disability. Disability also occurs well after birth. I think of smart people that I went to school with who descended into drug addiction never to return as "productive" member of society - yet. Should we ask them to step into giant trash cans?
I am prochoice also, but I can't see that the solution to slowing down the rapidly growing numbers of people of disabilities is encouragement of mass abortions. Research shows that high percentages of women who have abortions are heavily traumatized by the experience for life, and wish they hadn't done it.
We have currently a large population of children on the spectrum in the U.S. who will soon be transitioning into adulthood, and we have failed at developing corresponding transitional adult programs and services that will help them lead productive, meaningful lives. That is OUR failure, not theirs. We also need to be a lot better at providing "appropriate" education so that those who could be self sufficient can be. There is a lot more to helping someone reach independence than just filling their heads with academics.
I guess part of this discussion is why people have children, and what are parents reasonably entitled to. If we advocate reproductive freedom, are we hypocritical to argue against abortions based on genetic testing? Would I have a breaking point personally? Like I know I wouldn't abort a fetus based on DS, but might I consider it for a child who is bound to have a short painful life based on some hideous disease? And since I already know that genetic testing is still horribly flawed, could I bear the knowledge that I might risk making a terribly painful choice in error?
I am already walking a tight rope here, because I decided some time ago NOT to have anymore birth children based on the chance that they might also have some form of autism. I am stretched pretty thin as far as parenting resources as it is, between making the decision to stay at home rather than work since my children need me so much, and my own energy/productivity. I also need to take into account my OWN disability level since the stress of pregnancy on my body and the stress of raising these kids with special needs have taken a heavy toll on my own health. So who am I to tell someone not to abort a fetus based on whether or not genetic testing shows disability?
I guess it's just so hard to hear other people talk about how little value or potential children like my kids have. I dragged my son to his first IEP meeting ever, because staff at his school had already made so many offensive comments to me WITHOUT EVER MEETING HIM in regards to his future. I wanted them to be absolutely unable to deny him his humanity, and I guess I will continue the fight to prevent the rest of society from doing so as well.
I again apologize for my lack of technology skills, but here is a link you can cut and paste if you are interested in reading a very eloquent essay on the subject. My feelings, I fear will be expressed far less so, but my comment is underneath. My apologies to Amy for not asking her permission to track back. I know I will figure out how to do it eventually.
http://minikitkatgirl.blogspot.com/search/label/prenatal%20testing
What a horrifying thought that my two children with AS should not exist. I have to fight hard enough to get appopriate education for them without having also to justify whether they have enough value in this world to be allowed to breathe.
And I am one of the lucky ones. My children will most likely go to college, own property, have families of their own. And while it true that the world would be unlikely tobe able to sustain supporting individuals who weren't eventually self sufficient if their number grew to significant proportions of the population, I believe that is merely a wake up call for us to discover causes and clean up our toxic environments rather than a rush to euthanization of "imperfect" fetuses.
Using that kind of logic, should we consider an age at which all the elderly be euthanized because they are no longer able to care for themselves and may become a burden on their children eventually?
As with Down Syndrome, you can't even know a child's potential until after they are born and well into adulthood, whether they are on the spectrum or neurotypical or have some other kind of disability. Disability also occurs well after birth. I think of smart people that I went to school with who descended into drug addiction never to return as "productive" member of society - yet. Should we ask them to step into giant trash cans?
I am prochoice also, but I can't see that the solution to slowing down the rapidly growing numbers of people of disabilities is encouragement of mass abortions. Research shows that high percentages of women who have abortions are heavily traumatized by the experience for life, and wish they hadn't done it.
We have currently a large population of children on the spectrum in the U.S. who will soon be transitioning into adulthood, and we have failed at developing corresponding transitional adult programs and services that will help them lead productive, meaningful lives. That is OUR failure, not theirs. We also need to be a lot better at providing "appropriate" education so that those who could be self sufficient can be. There is a lot more to helping someone reach independence than just filling their heads with academics.
I guess part of this discussion is why people have children, and what are parents reasonably entitled to. If we advocate reproductive freedom, are we hypocritical to argue against abortions based on genetic testing? Would I have a breaking point personally? Like I know I wouldn't abort a fetus based on DS, but might I consider it for a child who is bound to have a short painful life based on some hideous disease? And since I already know that genetic testing is still horribly flawed, could I bear the knowledge that I might risk making a terribly painful choice in error?
I am already walking a tight rope here, because I decided some time ago NOT to have anymore birth children based on the chance that they might also have some form of autism. I am stretched pretty thin as far as parenting resources as it is, between making the decision to stay at home rather than work since my children need me so much, and my own energy/productivity. I also need to take into account my OWN disability level since the stress of pregnancy on my body and the stress of raising these kids with special needs have taken a heavy toll on my own health. So who am I to tell someone not to abort a fetus based on whether or not genetic testing shows disability?
I guess it's just so hard to hear other people talk about how little value or potential children like my kids have. I dragged my son to his first IEP meeting ever, because staff at his school had already made so many offensive comments to me WITHOUT EVER MEETING HIM in regards to his future. I wanted them to be absolutely unable to deny him his humanity, and I guess I will continue the fight to prevent the rest of society from doing so as well.
Sunday, December 14, 2008
a judge decided Terri Schiavo had no value
One of the reasons, among many, that I'm so grateful that both my autistics sons are so high functioning is that it's hard enough to get services for them without also proving that they are worth it. My children have enough expressive language skills to speak for themselves should anybody try to deny their humanity. But for any parents who have been denied services on the basis that it's not cost effective since their children are too low functioning, couldn't possibly benefit, are essentially not worth it, well, yes, that's the kind of society we live in. Read here about the world's only known deafblind triplets whose parents have worked tirelessly to raise private funds for their education when government services proved highly inadequate: http://www.chron.com/disp/story.mpl/headline/features/4946594.html
There is far too much debate about what constitutes a free, appropriate education. But education is just one aspect of our society through which we are willing to throw away the "lesser" members of our population.
One of my favorite new blogs is written by one of my fellow PA residents, and she wrote a very poignant commentary called Terri Schiavo and Autism, what is the connection. I don't know how to create links yet, but hopefully if you copy and paste you will be able to access the post to read the whole thing if you'd like. Basically, Terri Schiavo had brain damage, and needed help eating and with personal hygiene. She also had lost use of expressive language. She was not in a coma, she was not on life support. Her family of origin wanted to continue to care for her; her husband (who was considered by many to be responsible for her brain injury in the first place) got a court order in order to legally kill her by starving her to death.
http://debstake.wordpress.com/2008/11/20/terri-schiavo-and-autism-what-is-the-connection/
This was my comment:
I meant to say something about this the first time I read it, but was interupted by one of my aspies and forgot about it. But I think you hit the nail right on the head here, it is absolutely terrifying to think that any of us could so easily be disposable if the right circumstances conspire against us. People think this is an isolated incident, but this kind of attitude is used all the time to deny lower functioning autistics any kind of special education services or beneficial therapies. It is viewed as pointless or lacking pay off. Many wonder why so many parents in the autism community are focused on “cure” instead of accepting our children the way they are. WE are the ones who DO accept our children and value them, it’s the rest of the world that is so quick to dismiss our kids.
If we could prove that autism is curable, and enough kids “recover”, as they reach those higher levels of functioning, it is more difficult for the kids to be DISREGARDED. As Terri Schiavo was. What was especially horrifying to me about that specific case was that she had people who loved and cared about her advocating mightily on her behalf, and the government reasoned that it was STILL OK for her to be snuffed. Well if they have no concern about pumping our kids full of poisens that harm them, why should we surprised when they sanction outright murder? With all the reparation programs that we have instituted for slavery, forced sterility victims, and the World War II incarceration of Japanese Americans, you would think that we had reached a more enlightened age. We admitted we were wrong to deny people their civil rights and consider certain groups of people expendable. Guess not.
There is far too much debate about what constitutes a free, appropriate education. But education is just one aspect of our society through which we are willing to throw away the "lesser" members of our population.
One of my favorite new blogs is written by one of my fellow PA residents, and she wrote a very poignant commentary called Terri Schiavo and Autism, what is the connection. I don't know how to create links yet, but hopefully if you copy and paste you will be able to access the post to read the whole thing if you'd like. Basically, Terri Schiavo had brain damage, and needed help eating and with personal hygiene. She also had lost use of expressive language. She was not in a coma, she was not on life support. Her family of origin wanted to continue to care for her; her husband (who was considered by many to be responsible for her brain injury in the first place) got a court order in order to legally kill her by starving her to death.
http://debstake.wordpress.com/2008/11/20/terri-schiavo-and-autism-what-is-the-connection/
This was my comment:
I meant to say something about this the first time I read it, but was interupted by one of my aspies and forgot about it. But I think you hit the nail right on the head here, it is absolutely terrifying to think that any of us could so easily be disposable if the right circumstances conspire against us. People think this is an isolated incident, but this kind of attitude is used all the time to deny lower functioning autistics any kind of special education services or beneficial therapies. It is viewed as pointless or lacking pay off. Many wonder why so many parents in the autism community are focused on “cure” instead of accepting our children the way they are. WE are the ones who DO accept our children and value them, it’s the rest of the world that is so quick to dismiss our kids.
If we could prove that autism is curable, and enough kids “recover”, as they reach those higher levels of functioning, it is more difficult for the kids to be DISREGARDED. As Terri Schiavo was. What was especially horrifying to me about that specific case was that she had people who loved and cared about her advocating mightily on her behalf, and the government reasoned that it was STILL OK for her to be snuffed. Well if they have no concern about pumping our kids full of poisens that harm them, why should we surprised when they sanction outright murder? With all the reparation programs that we have instituted for slavery, forced sterility victims, and the World War II incarceration of Japanese Americans, you would think that we had reached a more enlightened age. We admitted we were wrong to deny people their civil rights and consider certain groups of people expendable. Guess not.
Wednesday, December 10, 2008
I couldn't get to one hundred .... yet.
1) I’ve always wanted to adopt four kids. Biological kids I could take or leave (easy to say if you’re not infertile). After I had one biological child with special needs, I wanted to adopt ten. I realized there are way too many kids out there that nobody wants. Since our second (surprise!) child also has autism, we are waiting on starting the adoption process until he’s a little older. I “borrowed” a third child from my cousin; she has lived with us since 2002.
2) I entered my forties with a whimper instead of a bang a couple years ago. I wish I could tell you that I think forty “rules.” When I told my pastor I was feeling old on my fortieth birthday, he said “I just turned fifty eight.” You gotta appreciate someone who helps you keep perspective at his own expense.
3) PA, DE, NJ, NY, MD, VA, WVA, CA, TX, AZ, IL, GA, MI, OH, OK, NM, NV, UT, ID, MT, MO, IN. I have been in 22 states that I remember. I have lived only in PA, MI, and CA. Most of the others I drove through on our way from MI to CA. I drove from CA to MT and back when I was 21. I wouldn’t mind moving down south because I’m sick of cold weather.
4) I am both the youngest of three and the second youngest of five. God bless blended families. I have full, half and step siblings. I also have an original mom, a stepmom, a foster mom, and a mother in law. Mother’s day is a bitch. I’ve got some great female mentors too.
5) My four siblings are all smarter than me. I think I was born with a reasonable intellect, they just have more. Well, I am better than my sisters at math, and better than my brothers at writing, so I guess I’m the happy medium. But they are all so cool. I hardly ever get to see them, and that sucks.
6) I have 35 first cousins. I couldn’t count the second cousins without getting out the family genealogy book. There are A LOT of them. And we all love to get together.
7) My grandmother and great grandmother lived long into their nineties. Here’s hoping.
8) I am a brittle diabetic. I found this out by having a mini stroke in 2007. This is the second time in my adult life that I have had a major illness to rehabilitate from. Whine bitch moan complain.
9) I love reading. Rather, I love reading GOOD books. Good is defined by my very subjective opinion. Books are like the air that I breathe. I love discussing books too.
10) I watch way too much tv, especially reality tv. I have wasted at least one lifetime doing this. It is definitely rotting what’s left of my brain. When I feel well, I don’t have time to waste on television. But I still love movies, in sickness and in health.
11) I was slow in embracing the internet; now I can’t imagine how I lived without it. I use it for shopping, research, socializing, self expression, education, entertainment and endless amounts of information.
12) I have always believed in eating well, exercising and medicating with herbs (legal ones). Even if I didn’t do it well, I believed in it. Now that I am diabetic, over half my diet is raw fruit and vegetables.
13) I am a closet Christian. I think I am a lousy witness, so I don’t do it even though I’m supposed to. Other Christians often annoyed the hell out of me before I was one, so I try not to do that to others. But my faith is very important to me.
15) I don’t believe in prayer in schools unless it is a private faith based school. I don’t want my kids to be forced to pray to Allah someday if the Muslims are in power, or some other religion that isn’t MINE. I don’t believe in making people of other faiths or non faith pray just because I want to.
16) I like to pray. A lot. I love reading scripture too, especially with an analysis guidebook in hand.
17) I think home education is the best option if you can afford it. Private school is better than public, but even I support basic public education with my votes. I think an educated citizenry is the only way to have and to preserve democracy. Too bad we suck as a country at public education. If you want to find out how to improve it, ask a teacher, not a politician.
18) My growing up life was rocky and stressful, but I thank god that my family impressed upon me the importance of higher education. Just getting my bachelor’s degree was a real struggle (even fully funded), but I have never regretted it; if I have the chance, I’ll still do more.
19) I left home at age 16 and went to college. Sounds tough, right? Nope, my dad paid for all of it. I didn’t even have a driver’s license yet. He bought me driving lessons too.
20) I started out in life as a blond. By age six, my hair had turned brown. I have never had the urge to try blond again, though I would like to get rid of the gray. I am too lazy/cheap to color my hair (so far). My hair is about two feet long now, at first I grew it to donate to charity, but now I’ve heard that they’ve stopped collecting it.
21) If I could have only one cosmetic procedure, my first choice would be to laser off all my excessive body hair. Hurray for genetics. The next thing would be my teeth, which aren’t in bad shape; I would just like them to be better. It would be nice to get rid of my stretch marks too, but I’m not sure anyone has perfected a technique for that. I would also consider a TINY tattoo if my little sister got one with me. But I might stop after the first touch of the needle, so I’d better go first.
22) As for NON cosmetic procedures, I have often wished my eyes could be corrected but I’m too scared to get the laser surgery in case it heals badly. There’s not really anything wrong with the appearance of my nose, but if I was brave and had the money, I would get that corrected too so I could breathe better.
23) I don’t do sports, I don’t follow sports. If I could correct the eyes and the hair thing, I would spend a lot of time in a swimming pool though. And I kind of like tennis. And ping pong. And basket ball. But I don’t do any of them anymore. I used to love cycling and roller skating too, though they’re not exactly team sports.
24) One of my favorite things about my husband is that he doesn’t follow sports, though he used to love playing volleyball and practicing martial arts. Another thing I love is that he doesn’t drink beer, or any alcohol at all. Another thing I like is that he is generally AWESOME. Of course, I’m not crazy about the asperger’s thing. But I’m pretty sure he doesn’t like my diabetes or fibromyalgia either.
25) I have fibromyalgia, which is basically a fancy word for really deep, sore muscle pain much of the time. It causes fatigue. It also has something to do with the “not interested in sports” issue. Any day in which I’m very active or even just do a lot of walking or driving, I really pay for the next day. But sometimes you gotta do it.
26) I was born near Philadelphia, and lived there with my mommy until I entered high school. Then I got shipped off to my Dad’s and spent the next twenty years in California. I developed severe hate for crowds and traffic. I am back near Philly now. I love all the greenery.
27) I had a chance to try both drinking and drugs in middle/high school, and I didn’t like them. I was offered cocaine in college, but I just wasn’t interested. I thank god I wasn’t inspired to go down that road. I had other vices, though, but to protect the innocent, I won’t discuss them. But I am nonetheless a big fan of rock and roll.
28) I though about suicide in both high school and college during two immensely emotionally painful times, both before I was 18. I wish I’d known there was help available.
29) I wish I’d had a relationship with god long before I did, but it wasn’t for a lack of trying. As my much admired Uncle said, “God’s timetable, not ours.” I’m so grateful that it finally happened. Consider me an eager consumer of the opiate of the masses.
30) Some of my favorite scripture, from the time I began my journey, was (and is):
he who has begun a good work in you will finish it
trust in the lord with all your heart, and rely not on your own understanding
I will never leave you nor forsake you
with god all things are possible
the joy of the lord is your strength
nothing in all creation will ever be able to separate us from the love of God
Don’t ask me which version. Pretty sure they’re not King James.
31) I love the Philly suburbs, but I really miss my people in Cali. My dream was to have an inexpensive home in each area, and I ALMOST made it happen, until the 9-11 recession, and we lost our Cali house. At least we kept our PA house! But our crisis was a lot less difficult than a lot of other people suffered at that time.
32) I have loved dogs since I was a little girl, and I still do. Cats are fun too; I’d gladly have both if I could.
33) I love playing the piano. I haven’t had one in my home since I was 16, I really miss it. Not that I have the room for it anyway. A cheap electronic keyboard is just not the same.
34) My biggest dream is to have a big house full of special needs children on a big acreage with an animal rescue. I’d also like to live not too far from a university so I can finish graduate school, and my dh could teach there.
35) We live near the border of Lancaster County (Amish territory) which is one of my favorite places on earth. We are impeded on car trips by horses and buggies quite often. If you have ever seen the TV show “John and Kate Plus Eight,” you will see a lot of the places we also like to go when they take their kids on local jaunts. It is also the location where much of the movie “Witness” was filmed. Sadly, we are also very close to the location where a gunman shot up a room full of Amish school children a couple years ago. I can’t pass by there without thinking about it.
36) My favorite color is lavender, followed by royal purple. My mother loves lavender too.
37) I stopped wearing jewelry during my first pregnancy, and haven’t done it since. Something about my body chemistry changed that made metal an irritant. I only ever really wore a watch and earrings, but I did love both, and now miss both. It’s hard for a control freak to live without a watch.
38) Snow is pretty but it’s really crap to drive in. I’m not a big fan of driving in the rain either. I’m not a big fan of driving PERIOD. My husband and I fight over who has to drive when we go out.
39) I love live folk music in coffee shops. I am also a metal fan, but only on my stereo. I don’t like to be in a crowd of metal fans. I don’t like to listen to classical music nearly as much as playing it. I’m embarrassed to admit that I like pop music too. I dislike rap though both my autie boys enjoyed it a young age. I love contemporary praise and worship music too, especially at my church.
40) I can’t sew, knit or crochet. I will sew on a button, but it will look cruddy. I wouldn’t mind learning, but it’s far down on the list. I NEVER iron, though I do most of the laundry in the house.
41) You know how some women collect shoes of purses? I have a thing for coats and jackets. I have no idea why. I hardly ever wear more than a few of them.
42) My second favorite hobby next to reading is taking pictures of people I know. I love to edit them and post them up to myspace, but I don’t keep it updated as much as I’d like. I used to love scrap booking before I had children, or I should say I love scrap booking and would still do it if I had the time and organization. A piano would surpass my camera for use if I had one.
43) I have been a big General Hospital fan since I was a little girl, but I haven’t watched it in like ten years. No time. I guess I could tape it and watch after bedtime; too much effort.
44) My first job was as a newspaper carrier at eleven years old for almost three years. I hated it. It taught me a lot of valuable lessons (I hate admitting my dad was right about that). Back in those days, we walked up to people’s doors and collected money, often going inside. NO WAY would I let my eleven year old daughter do that now. Not that I have one. But I wouldn’t even let my 21 year old daughter do it.
45) My next job was as a clerk in a low budget department store during my freshman year at UCLA. I hated that too, but it gave me a lot of motivation for completing college. I met lots of middle aged people there who hadn’t finished their education.
46) My third job was booking talent for children’s birthday parties and frat boy bachelor parties. Talk about interesting, weird, sometimes scary, and occasionally gross.
47) I transferred from the UC system to the CSU system after two years because I couldn’t stand the rich spoiled shallow students I kept meeting who were there to party. I should have looked harder for the ones who were serious about their education. I regretted transferring almost immediately after I discovered I was trading seventeen libraries for ONE. I should have tried hanging out with the graduate students instead. But the new program was practical and the students were serious and hard working, most with jobs. That part I loved.
48) I am not a gifted cook, and I don’t have the money for luxurious food anyway. Now that I have diabetes, our diet is more streamlined than ever. My poor family basically gets the same seven dishes rotated every week. But I get no complaints – I tell them they are welcome to make a pb and j if they don’t appreciate what I make. Well that’s not entirely true, my six year old usually complains everyday that he doesn’t like what I made, and then he eats it. He’s not a fan of pb and j.
49) My ideal decorating style would be plain furniture with massive amounts of filled bookcases and oil paintings of impressionist landscapes with lots of lavender and purple. I would have an entire large wall devoted to family and friend portraits though. The carpets and drapes would not draw attention to themselves. I love to decorate for holidays too. I really enjoy arts and crafty things that people make for me.
50) We consider ourselves very blessed though simple living is the name of the game. The only way I can afford to be a stay at home mom is to budget very carefully and balance the checkbook to the penny. We have lots of debt and no savings thanks to medical bills, a couple extended periods of unemployment and losing our first house after 9-11. Supposedly, we have GOOD health insurance. We both had plenty of school debt coming into the marriage. We have an extremely modest house (can be put on wheels) and two very old cars. But it’s worth any lack of luxury to be home with my asperger boys.
I don't really stop at fifty, I am a work in progress.....
2) I entered my forties with a whimper instead of a bang a couple years ago. I wish I could tell you that I think forty “rules.” When I told my pastor I was feeling old on my fortieth birthday, he said “I just turned fifty eight.” You gotta appreciate someone who helps you keep perspective at his own expense.
3) PA, DE, NJ, NY, MD, VA, WVA, CA, TX, AZ, IL, GA, MI, OH, OK, NM, NV, UT, ID, MT, MO, IN. I have been in 22 states that I remember. I have lived only in PA, MI, and CA. Most of the others I drove through on our way from MI to CA. I drove from CA to MT and back when I was 21. I wouldn’t mind moving down south because I’m sick of cold weather.
4) I am both the youngest of three and the second youngest of five. God bless blended families. I have full, half and step siblings. I also have an original mom, a stepmom, a foster mom, and a mother in law. Mother’s day is a bitch. I’ve got some great female mentors too.
5) My four siblings are all smarter than me. I think I was born with a reasonable intellect, they just have more. Well, I am better than my sisters at math, and better than my brothers at writing, so I guess I’m the happy medium. But they are all so cool. I hardly ever get to see them, and that sucks.
6) I have 35 first cousins. I couldn’t count the second cousins without getting out the family genealogy book. There are A LOT of them. And we all love to get together.
7) My grandmother and great grandmother lived long into their nineties. Here’s hoping.
8) I am a brittle diabetic. I found this out by having a mini stroke in 2007. This is the second time in my adult life that I have had a major illness to rehabilitate from. Whine bitch moan complain.
9) I love reading. Rather, I love reading GOOD books. Good is defined by my very subjective opinion. Books are like the air that I breathe. I love discussing books too.
10) I watch way too much tv, especially reality tv. I have wasted at least one lifetime doing this. It is definitely rotting what’s left of my brain. When I feel well, I don’t have time to waste on television. But I still love movies, in sickness and in health.
11) I was slow in embracing the internet; now I can’t imagine how I lived without it. I use it for shopping, research, socializing, self expression, education, entertainment and endless amounts of information.
12) I have always believed in eating well, exercising and medicating with herbs (legal ones). Even if I didn’t do it well, I believed in it. Now that I am diabetic, over half my diet is raw fruit and vegetables.
13) I am a closet Christian. I think I am a lousy witness, so I don’t do it even though I’m supposed to. Other Christians often annoyed the hell out of me before I was one, so I try not to do that to others. But my faith is very important to me.
15) I don’t believe in prayer in schools unless it is a private faith based school. I don’t want my kids to be forced to pray to Allah someday if the Muslims are in power, or some other religion that isn’t MINE. I don’t believe in making people of other faiths or non faith pray just because I want to.
16) I like to pray. A lot. I love reading scripture too, especially with an analysis guidebook in hand.
17) I think home education is the best option if you can afford it. Private school is better than public, but even I support basic public education with my votes. I think an educated citizenry is the only way to have and to preserve democracy. Too bad we suck as a country at public education. If you want to find out how to improve it, ask a teacher, not a politician.
18) My growing up life was rocky and stressful, but I thank god that my family impressed upon me the importance of higher education. Just getting my bachelor’s degree was a real struggle (even fully funded), but I have never regretted it; if I have the chance, I’ll still do more.
19) I left home at age 16 and went to college. Sounds tough, right? Nope, my dad paid for all of it. I didn’t even have a driver’s license yet. He bought me driving lessons too.
20) I started out in life as a blond. By age six, my hair had turned brown. I have never had the urge to try blond again, though I would like to get rid of the gray. I am too lazy/cheap to color my hair (so far). My hair is about two feet long now, at first I grew it to donate to charity, but now I’ve heard that they’ve stopped collecting it.
21) If I could have only one cosmetic procedure, my first choice would be to laser off all my excessive body hair. Hurray for genetics. The next thing would be my teeth, which aren’t in bad shape; I would just like them to be better. It would be nice to get rid of my stretch marks too, but I’m not sure anyone has perfected a technique for that. I would also consider a TINY tattoo if my little sister got one with me. But I might stop after the first touch of the needle, so I’d better go first.
22) As for NON cosmetic procedures, I have often wished my eyes could be corrected but I’m too scared to get the laser surgery in case it heals badly. There’s not really anything wrong with the appearance of my nose, but if I was brave and had the money, I would get that corrected too so I could breathe better.
23) I don’t do sports, I don’t follow sports. If I could correct the eyes and the hair thing, I would spend a lot of time in a swimming pool though. And I kind of like tennis. And ping pong. And basket ball. But I don’t do any of them anymore. I used to love cycling and roller skating too, though they’re not exactly team sports.
24) One of my favorite things about my husband is that he doesn’t follow sports, though he used to love playing volleyball and practicing martial arts. Another thing I love is that he doesn’t drink beer, or any alcohol at all. Another thing I like is that he is generally AWESOME. Of course, I’m not crazy about the asperger’s thing. But I’m pretty sure he doesn’t like my diabetes or fibromyalgia either.
25) I have fibromyalgia, which is basically a fancy word for really deep, sore muscle pain much of the time. It causes fatigue. It also has something to do with the “not interested in sports” issue. Any day in which I’m very active or even just do a lot of walking or driving, I really pay for the next day. But sometimes you gotta do it.
26) I was born near Philadelphia, and lived there with my mommy until I entered high school. Then I got shipped off to my Dad’s and spent the next twenty years in California. I developed severe hate for crowds and traffic. I am back near Philly now. I love all the greenery.
27) I had a chance to try both drinking and drugs in middle/high school, and I didn’t like them. I was offered cocaine in college, but I just wasn’t interested. I thank god I wasn’t inspired to go down that road. I had other vices, though, but to protect the innocent, I won’t discuss them. But I am nonetheless a big fan of rock and roll.
28) I though about suicide in both high school and college during two immensely emotionally painful times, both before I was 18. I wish I’d known there was help available.
29) I wish I’d had a relationship with god long before I did, but it wasn’t for a lack of trying. As my much admired Uncle said, “God’s timetable, not ours.” I’m so grateful that it finally happened. Consider me an eager consumer of the opiate of the masses.
30) Some of my favorite scripture, from the time I began my journey, was (and is):
he who has begun a good work in you will finish it
trust in the lord with all your heart, and rely not on your own understanding
I will never leave you nor forsake you
with god all things are possible
the joy of the lord is your strength
nothing in all creation will ever be able to separate us from the love of God
Don’t ask me which version. Pretty sure they’re not King James.
31) I love the Philly suburbs, but I really miss my people in Cali. My dream was to have an inexpensive home in each area, and I ALMOST made it happen, until the 9-11 recession, and we lost our Cali house. At least we kept our PA house! But our crisis was a lot less difficult than a lot of other people suffered at that time.
32) I have loved dogs since I was a little girl, and I still do. Cats are fun too; I’d gladly have both if I could.
33) I love playing the piano. I haven’t had one in my home since I was 16, I really miss it. Not that I have the room for it anyway. A cheap electronic keyboard is just not the same.
34) My biggest dream is to have a big house full of special needs children on a big acreage with an animal rescue. I’d also like to live not too far from a university so I can finish graduate school, and my dh could teach there.
35) We live near the border of Lancaster County (Amish territory) which is one of my favorite places on earth. We are impeded on car trips by horses and buggies quite often. If you have ever seen the TV show “John and Kate Plus Eight,” you will see a lot of the places we also like to go when they take their kids on local jaunts. It is also the location where much of the movie “Witness” was filmed. Sadly, we are also very close to the location where a gunman shot up a room full of Amish school children a couple years ago. I can’t pass by there without thinking about it.
36) My favorite color is lavender, followed by royal purple. My mother loves lavender too.
37) I stopped wearing jewelry during my first pregnancy, and haven’t done it since. Something about my body chemistry changed that made metal an irritant. I only ever really wore a watch and earrings, but I did love both, and now miss both. It’s hard for a control freak to live without a watch.
38) Snow is pretty but it’s really crap to drive in. I’m not a big fan of driving in the rain either. I’m not a big fan of driving PERIOD. My husband and I fight over who has to drive when we go out.
39) I love live folk music in coffee shops. I am also a metal fan, but only on my stereo. I don’t like to be in a crowd of metal fans. I don’t like to listen to classical music nearly as much as playing it. I’m embarrassed to admit that I like pop music too. I dislike rap though both my autie boys enjoyed it a young age. I love contemporary praise and worship music too, especially at my church.
40) I can’t sew, knit or crochet. I will sew on a button, but it will look cruddy. I wouldn’t mind learning, but it’s far down on the list. I NEVER iron, though I do most of the laundry in the house.
41) You know how some women collect shoes of purses? I have a thing for coats and jackets. I have no idea why. I hardly ever wear more than a few of them.
42) My second favorite hobby next to reading is taking pictures of people I know. I love to edit them and post them up to myspace, but I don’t keep it updated as much as I’d like. I used to love scrap booking before I had children, or I should say I love scrap booking and would still do it if I had the time and organization. A piano would surpass my camera for use if I had one.
43) I have been a big General Hospital fan since I was a little girl, but I haven’t watched it in like ten years. No time. I guess I could tape it and watch after bedtime; too much effort.
44) My first job was as a newspaper carrier at eleven years old for almost three years. I hated it. It taught me a lot of valuable lessons (I hate admitting my dad was right about that). Back in those days, we walked up to people’s doors and collected money, often going inside. NO WAY would I let my eleven year old daughter do that now. Not that I have one. But I wouldn’t even let my 21 year old daughter do it.
45) My next job was as a clerk in a low budget department store during my freshman year at UCLA. I hated that too, but it gave me a lot of motivation for completing college. I met lots of middle aged people there who hadn’t finished their education.
46) My third job was booking talent for children’s birthday parties and frat boy bachelor parties. Talk about interesting, weird, sometimes scary, and occasionally gross.
47) I transferred from the UC system to the CSU system after two years because I couldn’t stand the rich spoiled shallow students I kept meeting who were there to party. I should have looked harder for the ones who were serious about their education. I regretted transferring almost immediately after I discovered I was trading seventeen libraries for ONE. I should have tried hanging out with the graduate students instead. But the new program was practical and the students were serious and hard working, most with jobs. That part I loved.
48) I am not a gifted cook, and I don’t have the money for luxurious food anyway. Now that I have diabetes, our diet is more streamlined than ever. My poor family basically gets the same seven dishes rotated every week. But I get no complaints – I tell them they are welcome to make a pb and j if they don’t appreciate what I make. Well that’s not entirely true, my six year old usually complains everyday that he doesn’t like what I made, and then he eats it. He’s not a fan of pb and j.
49) My ideal decorating style would be plain furniture with massive amounts of filled bookcases and oil paintings of impressionist landscapes with lots of lavender and purple. I would have an entire large wall devoted to family and friend portraits though. The carpets and drapes would not draw attention to themselves. I love to decorate for holidays too. I really enjoy arts and crafty things that people make for me.
50) We consider ourselves very blessed though simple living is the name of the game. The only way I can afford to be a stay at home mom is to budget very carefully and balance the checkbook to the penny. We have lots of debt and no savings thanks to medical bills, a couple extended periods of unemployment and losing our first house after 9-11. Supposedly, we have GOOD health insurance. We both had plenty of school debt coming into the marriage. We have an extremely modest house (can be put on wheels) and two very old cars. But it’s worth any lack of luxury to be home with my asperger boys.
I don't really stop at fifty, I am a work in progress.....
Survey: appropriate education for aspie's
One very famous book author with asperger's syndrome, who I have already referenced in this blog, asked his readers to provide him with input for speaking to a group of educators concerned with increasing student achievement. Apparently autistic students aren't doing so well in traditional public schools. Is this a great surprise to anyone who has a child on the spectrum? Anyway, this was my suggestion:
I think the children's voices really need to be heard. Usually they are able to communicate, if not verbally, in other ways, what works for them and helps them to maximize their success. My guess is that most children with a spectrum diagnosis DO NOT appreciate mainstreaming, but why not ask them, or let them show you? And other volatile environments, like a school bus, hallways, or cafeterias, are often recipes for disaster because the stimulation is so overwhelming. When meltdowns happen, learning isn't.
Our state offers publicly funded cyber schooling, and that is a big hit with my aspie teen. Another cyber school we are considering has a large aspie population by default, this was a development the administration wasn't expecting. But one of their teachers told me that this appears to be a method by which aspies are able to thrive because it cuts out so many of the negative aspects of a traditional brick and mortar school for those students. It also utilizes "block" scheduling, which allows students to focus on fewer subjects in greater depth at one time. My son has asked me to transfer him to that school for that reason.
A venue for social skills is important too, critical even, but only if it's a POSITIVE experience for the individual. Negative social experiences generally lead to academic failure and withdrawal. Rarely in "the real world" is an adult forced to stay in a negative social environment. What educators often think should be a positive social environment is just the opposite for a kid on the spectrum.
My concern especially is those teachers who tolerate bullying, because the autistic person's behavior is considered purposefully negative, rather than typical or unavoidable for them. To me, this like allowing a deaf person to be ostracized since they are being "bad" for not listening. Note the teacher in Florida who had her students each voice how much they disliked their autistic classmate's behavior as a group to his face in a "Survivor" style.
Teachers who are expected to teach autistic children need to be specifically educated about it, no question. If someone used the word "unmotivated" to describe my child, I would tell them, "why would you expect him to be?" Those are not appropriate standards for our children, and the teachers need to understand that.
More than that, as the population of people on the spectrum continues to grow at an exponential rate, the other students need to be specifically educated about neurodiversity, and not just "tolerance", but acceptance. Especially in districts where mainstreaming is still considered the preferable method of education, the other students NEED that help in understanding their autistic classmates.
I think the children's voices really need to be heard. Usually they are able to communicate, if not verbally, in other ways, what works for them and helps them to maximize their success. My guess is that most children with a spectrum diagnosis DO NOT appreciate mainstreaming, but why not ask them, or let them show you? And other volatile environments, like a school bus, hallways, or cafeterias, are often recipes for disaster because the stimulation is so overwhelming. When meltdowns happen, learning isn't.
Our state offers publicly funded cyber schooling, and that is a big hit with my aspie teen. Another cyber school we are considering has a large aspie population by default, this was a development the administration wasn't expecting. But one of their teachers told me that this appears to be a method by which aspies are able to thrive because it cuts out so many of the negative aspects of a traditional brick and mortar school for those students. It also utilizes "block" scheduling, which allows students to focus on fewer subjects in greater depth at one time. My son has asked me to transfer him to that school for that reason.
A venue for social skills is important too, critical even, but only if it's a POSITIVE experience for the individual. Negative social experiences generally lead to academic failure and withdrawal. Rarely in "the real world" is an adult forced to stay in a negative social environment. What educators often think should be a positive social environment is just the opposite for a kid on the spectrum.
My concern especially is those teachers who tolerate bullying, because the autistic person's behavior is considered purposefully negative, rather than typical or unavoidable for them. To me, this like allowing a deaf person to be ostracized since they are being "bad" for not listening. Note the teacher in Florida who had her students each voice how much they disliked their autistic classmate's behavior as a group to his face in a "Survivor" style.
Teachers who are expected to teach autistic children need to be specifically educated about it, no question. If someone used the word "unmotivated" to describe my child, I would tell them, "why would you expect him to be?" Those are not appropriate standards for our children, and the teachers need to understand that.
More than that, as the population of people on the spectrum continues to grow at an exponential rate, the other students need to be specifically educated about neurodiversity, and not just "tolerance", but acceptance. Especially in districts where mainstreaming is still considered the preferable method of education, the other students NEED that help in understanding their autistic classmates.
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