I've debated long and hard about this series of posts. I've debated how much I want to tell of our story. Can it even be expressed in a series of blog posts? Do I want to draw attention to myself and what we've been through over the last thirteen years? Do I share names and personal information? There's so much to consider.
What I've decided is this...our story needs to be told. And I have to warn you, its not pretty. It's dark and horrible, but hopefully it will have a happy ending. I believe it will on my good days. I am going to change names, though, not because I want to protect the people I talk about. It's more for our own self-preservation and out of respect for my son, who is now 17 years old and a sophmore in college.
This is not a fictional tale. I'm not going to sugar coat it. I'm not going to deviate from the truth of it. Because it is all, sadly and heartbreakingly, true.
Asperge'rs Syndrome is currently considered a form of Autism. Each child on the Autism Spectrum is different and their strengths and struggles play out differently, but what people with Aspergers all seem to have in common are (a) high intelligence (b) sensory issues (c) fine and gross motor skills struggles (d) social skills deficits.
For my son, Asperger's Syndrome presents itself in high-gifted intelligence bordering on genius, extreme touch sensitivity, noise sensitivity, motion sensitivity, hand writing issues, coordination issues, sequencing-of-events issues, difficulty understanding other people's points of view, difficulty with social cues, and extreme struggles with social interactions. His life is difficult enough - but it has been made infinitely worse by the way some people have chosen to handle his struggles.
Because of what has happened to him, my son also now struggles with clinical anxiety, depression and post-traumatic stress. He requires medication and counseling, and probably will for the rest of his life.
Be prepared, if you choose to follow my posts. They will be frank. They will be difficult to read. They will make you question what happens to your own children in school. And I hope, for me, they will be cathartic.
Wednesday, April 25, 2012
Saturday, April 14, 2012
An Open Letter to Politicians - What's Important to Women
Dear Mr. Candidate Hoping to Make Decisions for Me -
As a woman, I feel it's my duty to point out to you what is important to me when it comes to making my world a better place.
1. My Uterus.
Please understand, it belongs to me. What I choose to do with it is no one's business by my own. In fact, I think I have more right to make decisions about it than you do your penis, since my parts are inside my body and yours hang out there dangling about for anyone to use. I think that any man who believes they have the right to force me to insert a large phallus shaped camera into my vagina before making a choice that affects my entire life, should have to do the following: (a) spend a month having someone you care about working said phallus shaped object in your rectum, at least once every day, while telling you they love you (b) at the end of that month, visit a doctor who does an exam with another tool that stretches you while they insert various things inside and examine you (c) spend the next three months finding every food you like reduces you to vomiting violently, wear one of those "maternity suits" that gradually adds padding and weight, endure more phallus shaped insertions -- I'd continue, but the truth is you'd never make it beyond that initial three months. You would be crying for your mommy.
Maybe we should make men who want to have sex visit a doctor and have their penis examined in some equally torturous way -- or maybe they should have to sit through the annual exam of a woman they love. I don't know for sure, but I'd bet that would change a few minds.
It takes a lot of trust in someone being a woman. You have no idea. And I have never been so glad that my uterus is now retired from the baby making phase.
2. What You Believe In.
Seriously. What do you believe in? And I'm not talking your political party's opinion. What do you, as a person, believe in? Because I think this country is in need of a new political system. Democrats, Republicans - who gives a shit?! We've grown too large for a two party system. It doesn't work anymore. And the Electoral College? It's crap. First, we need to toss all of the republicans and democrats out of office and elect people who are willing to improve this country. Second, we need to toss the electoral college and let EVERY vote from every citizen make the decision as to who gets to run things. I'm not voting for anyone who touts the party line. I don't care about what your political party wants or believes. I care what you believe. If you want my vote, start talking for real. Grow some balls and be yourself.
Hey, that's kind of funny, isn't it? You're swinging your dick around telling me what I can do with my uterus and you don't have the balls to do anything without some other guys holding your dick. Damn.
3. My Kid's Future.
We need an overhaul of our education system. It's failing. Do you realize our kids learn the same thing year after year? For instance, the eco system. Do you know they learn the eco system 3-4 times in detail from 1st grade to 12th grade? They spend years on it. The only thing that changes is the terminology used. Why can't they just learn it with the proper terms from the start? Kids aren't stupid. We treat them like they are. We don't give their brains credit. We should have people studying how other countries that are excelling structure their learning. There's a reason we're falling behind. And our kids are suffering because of it.
If we changed our education system to encompass learning languages, sciences, proper math and technology from 1st grade, by the time they hit high school, they could be learning at a college level. Its no wonder they're bored and lack motivation. Our schools are dull, monotonous places that only care if our kids can pass tests designed to show that they're learning. They teach kids assuming they're too stupid to grasp concepts at a complex level. That's selling them short.
Stop selling our kids short and teach them what's important. (And ancient history, while important, is not 12 years repeating the same information over and over important.)
4. The Environment.
Come on. If you wanted to, you could have this country switched over to alternate powers in no time. Why don't we have more windmill farms? Those turbines rock. Why aren't we all driving electrical cars? The technology has been around forever. Let's stop tearing this world apart by drilling and mining and put our people to work on technologies that will keep this world healthy? We have the knowledge. Why aren't we using it?
So who out there is going to get my vote? Because right now, none of you are looking good.
As a woman, I feel it's my duty to point out to you what is important to me when it comes to making my world a better place.
1. My Uterus.
Please understand, it belongs to me. What I choose to do with it is no one's business by my own. In fact, I think I have more right to make decisions about it than you do your penis, since my parts are inside my body and yours hang out there dangling about for anyone to use. I think that any man who believes they have the right to force me to insert a large phallus shaped camera into my vagina before making a choice that affects my entire life, should have to do the following: (a) spend a month having someone you care about working said phallus shaped object in your rectum, at least once every day, while telling you they love you (b) at the end of that month, visit a doctor who does an exam with another tool that stretches you while they insert various things inside and examine you (c) spend the next three months finding every food you like reduces you to vomiting violently, wear one of those "maternity suits" that gradually adds padding and weight, endure more phallus shaped insertions -- I'd continue, but the truth is you'd never make it beyond that initial three months. You would be crying for your mommy.
Maybe we should make men who want to have sex visit a doctor and have their penis examined in some equally torturous way -- or maybe they should have to sit through the annual exam of a woman they love. I don't know for sure, but I'd bet that would change a few minds.
It takes a lot of trust in someone being a woman. You have no idea. And I have never been so glad that my uterus is now retired from the baby making phase.
2. What You Believe In.
Seriously. What do you believe in? And I'm not talking your political party's opinion. What do you, as a person, believe in? Because I think this country is in need of a new political system. Democrats, Republicans - who gives a shit?! We've grown too large for a two party system. It doesn't work anymore. And the Electoral College? It's crap. First, we need to toss all of the republicans and democrats out of office and elect people who are willing to improve this country. Second, we need to toss the electoral college and let EVERY vote from every citizen make the decision as to who gets to run things. I'm not voting for anyone who touts the party line. I don't care about what your political party wants or believes. I care what you believe. If you want my vote, start talking for real. Grow some balls and be yourself.
Hey, that's kind of funny, isn't it? You're swinging your dick around telling me what I can do with my uterus and you don't have the balls to do anything without some other guys holding your dick. Damn.
3. My Kid's Future.
We need an overhaul of our education system. It's failing. Do you realize our kids learn the same thing year after year? For instance, the eco system. Do you know they learn the eco system 3-4 times in detail from 1st grade to 12th grade? They spend years on it. The only thing that changes is the terminology used. Why can't they just learn it with the proper terms from the start? Kids aren't stupid. We treat them like they are. We don't give their brains credit. We should have people studying how other countries that are excelling structure their learning. There's a reason we're falling behind. And our kids are suffering because of it.
If we changed our education system to encompass learning languages, sciences, proper math and technology from 1st grade, by the time they hit high school, they could be learning at a college level. Its no wonder they're bored and lack motivation. Our schools are dull, monotonous places that only care if our kids can pass tests designed to show that they're learning. They teach kids assuming they're too stupid to grasp concepts at a complex level. That's selling them short.
Stop selling our kids short and teach them what's important. (And ancient history, while important, is not 12 years repeating the same information over and over important.)
4. The Environment.
Come on. If you wanted to, you could have this country switched over to alternate powers in no time. Why don't we have more windmill farms? Those turbines rock. Why aren't we all driving electrical cars? The technology has been around forever. Let's stop tearing this world apart by drilling and mining and put our people to work on technologies that will keep this world healthy? We have the knowledge. Why aren't we using it?
So who out there is going to get my vote? Because right now, none of you are looking good.
Thursday, April 12, 2012
On Teaching Social Appropriateness...
Can I say the thing I dislike most about Aspergers Syndrome? (And please, do not misinterpret this to mean I have anything against people with Aspergers, because that's simply not the case...)
Social Appropriateness
We take it for granted - that ability to know how to react appropriately to a given situation. I would give up everything I own for my son to be able to understand social situations and how to react appropriately to them without (a) crying (b) screaming (c) self-depricating (d) withdrawing.
Example 1: A person you're friends with walks up to you and punches you in the arm. They have a grin on their face and they say "Hey asshole, how's it hanging?" Do you know their intention? And do you know how to respond appropriately? If you're socially skilled, you know that as a friend, this is a friendly greeting - if a bit obnoxious.
For someone with Aspergers, that's not clearly defined. They might think their friend is angry with them; they might think he's picking a fight; they might feel threatened. Their reaction might be anything from bursting into tears to physically attacking the friend to running screaming in the opposite direction.
Example 2: Your friend says something hurtful. They don't even realize that they've done it. How do you react? Do you confront them? Do you let it go? Obviously, it depends on the friend and what's been said and their intention.
For someone with Aspergers, this could be the end of a friendship. Because the world is so often black and white for them, a friend being hurtful means they're not a friend anymore. Their level of hurt over what they perceive to be an act of deliberate cruelty (but which may have been a clueless comment like "don't be stupid") is often dealt with by withdrawal from the friendship. They don't understand that everyone says stupid/mean/thoughtless things sometimes.
Example 3: You order a computer online. When the computer arrives, its not in working order. How do you handle it? For most of us, we would pack it back up, contact the company and arrange to return it/get a refund. We'd be disappointed and maybe frustrated, but we would accept that sometimes these things happen.
For a person with Aspergers, they get locked on the fact that the computer doesn't work. They often take it personally - as if someone out there meant to send them a product that didn't work. They might decide to take the computer apart to try and fix it; they might throw it out or further damage it; they most likely will be extremely frustrated and react in an entirely inappropriate way by screaming at the people around them or sending an email to the company that would be considered threatening.
For my kiddo, emotions are all exaggerated. It's the only way he can seem to express himself in a way that makes sense to him. When he is frustrated even the tiniest bit, his reaction is extreme. Like EXTREME extreme. While this might be tolerable with a 4 year old, it is frightening with a 17 yr. old who weighs 190 lbs.
I've been working on teaching him social appropriateness since he was 4 yrs. old. It's the one thing he struggles to get a handle on. Because proper social responses change as you mature and they depend on whether you're talking to peers, relatives, authority figures, infants, animals, people you know, people you don't know, etc.
The reality is once you hit a certain age, as a boy, you're not supposed to cry. And you're not supposed to yell or get really angry (because you'll get yourself shot by police). And you're not supposed to laugh hysterically out loud at a mildly funny joke. And so on and blah blah blah. Social rules suck.
Teaching someone not to overreact is a challenging thing at best, but its something my son needs to learn. I've read the accounts of adults with Aspergers being in confrontations with police. I don't want that for my son. Certainly not because he ordered a hamburger plain and it came with pickles and mustard. There's an appropriate level of anger, frustration, excitement, happiness, sadness and every other emotion you can think of .... and an inappropriate level. Teaching it is so hard.
Social Appropriateness
We take it for granted - that ability to know how to react appropriately to a given situation. I would give up everything I own for my son to be able to understand social situations and how to react appropriately to them without (a) crying (b) screaming (c) self-depricating (d) withdrawing.
Example 1: A person you're friends with walks up to you and punches you in the arm. They have a grin on their face and they say "Hey asshole, how's it hanging?" Do you know their intention? And do you know how to respond appropriately? If you're socially skilled, you know that as a friend, this is a friendly greeting - if a bit obnoxious.
For someone with Aspergers, that's not clearly defined. They might think their friend is angry with them; they might think he's picking a fight; they might feel threatened. Their reaction might be anything from bursting into tears to physically attacking the friend to running screaming in the opposite direction.
Example 2: Your friend says something hurtful. They don't even realize that they've done it. How do you react? Do you confront them? Do you let it go? Obviously, it depends on the friend and what's been said and their intention.
For someone with Aspergers, this could be the end of a friendship. Because the world is so often black and white for them, a friend being hurtful means they're not a friend anymore. Their level of hurt over what they perceive to be an act of deliberate cruelty (but which may have been a clueless comment like "don't be stupid") is often dealt with by withdrawal from the friendship. They don't understand that everyone says stupid/mean/thoughtless things sometimes.
Example 3: You order a computer online. When the computer arrives, its not in working order. How do you handle it? For most of us, we would pack it back up, contact the company and arrange to return it/get a refund. We'd be disappointed and maybe frustrated, but we would accept that sometimes these things happen.
For a person with Aspergers, they get locked on the fact that the computer doesn't work. They often take it personally - as if someone out there meant to send them a product that didn't work. They might decide to take the computer apart to try and fix it; they might throw it out or further damage it; they most likely will be extremely frustrated and react in an entirely inappropriate way by screaming at the people around them or sending an email to the company that would be considered threatening.
For my kiddo, emotions are all exaggerated. It's the only way he can seem to express himself in a way that makes sense to him. When he is frustrated even the tiniest bit, his reaction is extreme. Like EXTREME extreme. While this might be tolerable with a 4 year old, it is frightening with a 17 yr. old who weighs 190 lbs.
I've been working on teaching him social appropriateness since he was 4 yrs. old. It's the one thing he struggles to get a handle on. Because proper social responses change as you mature and they depend on whether you're talking to peers, relatives, authority figures, infants, animals, people you know, people you don't know, etc.
The reality is once you hit a certain age, as a boy, you're not supposed to cry. And you're not supposed to yell or get really angry (because you'll get yourself shot by police). And you're not supposed to laugh hysterically out loud at a mildly funny joke. And so on and blah blah blah. Social rules suck.
Teaching someone not to overreact is a challenging thing at best, but its something my son needs to learn. I've read the accounts of adults with Aspergers being in confrontations with police. I don't want that for my son. Certainly not because he ordered a hamburger plain and it came with pickles and mustard. There's an appropriate level of anger, frustration, excitement, happiness, sadness and every other emotion you can think of .... and an inappropriate level. Teaching it is so hard.
Monday, March 26, 2012
Aspergers - Opening A Dialogue
I've been thinking about this for a while. There are a lot of books about aspergers syndrome from doctor's points-of-view. There are books by parents that are about life on the spectrum. But there are very few books that relay helpful information to people who are struggling in a practical "mom's advice" kind of way.
The problem is that each kid is different - when they call it a spectrum, they're not kidding - and what works for some doesn't work for all. But wouldn't it be awesome if there was a book that defined issues kids/teens/adults with aspergers struggle with and lists of what has worked from the viewpoint of either parents or the people aspergers themselves?
My son's psychologist has been recommending that my son and I write this kind of book. We've been with him for close to 10 years and he's been an amazing help. He thinks my son has a very unique understanding of his own brain and how it differs from others. In fact, in the last year or so, the psychologist will sometimes present my son with a situation another patient is having and ask if he can explain how his brain would interpret it. My son always has an amazingly complex answer that helps.
I have a degree in communication, specializing in journalism. I write fiction for entertainment, but writing a book about our lives has always been sitting on the back burner in my mind. But I felt that another 'poor us' book wasn't anything I wanted to do. Helpful suggestions and tips, tho, that interests me.
But in order to do it properly, I'm going to need to get tips that work from other parents on a number of things. Because I can talk about sensory issues, theory of mind, proprioreception, medication, school issues, therapies, etc. and what worked for us. But in the end what works for us won't work for everyone. The more ideas I can convey, the better and more useful the book would be.
Is there anyone out there that would be willing to have their brain picked? If you were a parent, I would be looking for things like what worked for you and what didn't if your kid had difficulty learning to ride a bike; if your kid was having math difficulties; if your kid was sensitive to sound...that sort of thing.
And for people on the spectrum, I would be looking for most of the same things, but in addition, I would be looking for any insight into how your brain processes situations to help parents, teachers, doctors, etc to understand your struggles.
So....anyone out there want to chat?
The problem is that each kid is different - when they call it a spectrum, they're not kidding - and what works for some doesn't work for all. But wouldn't it be awesome if there was a book that defined issues kids/teens/adults with aspergers struggle with and lists of what has worked from the viewpoint of either parents or the people aspergers themselves?
My son's psychologist has been recommending that my son and I write this kind of book. We've been with him for close to 10 years and he's been an amazing help. He thinks my son has a very unique understanding of his own brain and how it differs from others. In fact, in the last year or so, the psychologist will sometimes present my son with a situation another patient is having and ask if he can explain how his brain would interpret it. My son always has an amazingly complex answer that helps.
I have a degree in communication, specializing in journalism. I write fiction for entertainment, but writing a book about our lives has always been sitting on the back burner in my mind. But I felt that another 'poor us' book wasn't anything I wanted to do. Helpful suggestions and tips, tho, that interests me.
But in order to do it properly, I'm going to need to get tips that work from other parents on a number of things. Because I can talk about sensory issues, theory of mind, proprioreception, medication, school issues, therapies, etc. and what worked for us. But in the end what works for us won't work for everyone. The more ideas I can convey, the better and more useful the book would be.
Is there anyone out there that would be willing to have their brain picked? If you were a parent, I would be looking for things like what worked for you and what didn't if your kid had difficulty learning to ride a bike; if your kid was having math difficulties; if your kid was sensitive to sound...that sort of thing.
And for people on the spectrum, I would be looking for most of the same things, but in addition, I would be looking for any insight into how your brain processes situations to help parents, teachers, doctors, etc to understand your struggles.
So....anyone out there want to chat?
Thursday, March 22, 2012
Sunshine and Happiness
Today is the third day in a row where the temperature has crept over 80 degrees. In fact, we broke the record for warm temperatures today by 10 degrees. For the last three days, I have basked in the sun on my deck. I don't care that the outdoor furniture is still locked up for 2-3 months. I've thrown myself down on the hard wooden deck and played sun bunny. I'm in shorts and a tank top, my bare feet decorated with purple nail polish.
Last night, we left the windows open. Yes, it was so warm in the house we had to let the heat out. The smell of warm dirt and warmer winds comforted me all night.
For people who live in perpetual warm temperatures, I'm sure this is no big deal. But I live in Massachusetts, where the temperature should be high 40's this time of year, and still dipping into the freezing zone at night. There should be snow on the ground and a bite in the air.
You'll hear no complaints from me over this bizarre and desperately needed weather. I'm not a fan of winter despite growing up in northern New England. Winter makes me sad. But the last three days have renewed me. I feel like I can tackle things again. I feel like I can get my feet back under me. And that's a very good thing.
Last night, we left the windows open. Yes, it was so warm in the house we had to let the heat out. The smell of warm dirt and warmer winds comforted me all night.
For people who live in perpetual warm temperatures, I'm sure this is no big deal. But I live in Massachusetts, where the temperature should be high 40's this time of year, and still dipping into the freezing zone at night. There should be snow on the ground and a bite in the air.
You'll hear no complaints from me over this bizarre and desperately needed weather. I'm not a fan of winter despite growing up in northern New England. Winter makes me sad. But the last three days have renewed me. I feel like I can tackle things again. I feel like I can get my feet back under me. And that's a very good thing.
Thursday, March 15, 2012
Finding Balance or Maybe Losing It (OMG-A Pun)
Today was our second visit with the new psychiatrist to try to sort out meds. Kiddo is on several things - risperdal for the inflexible thinking/obsessive component of aspergers & ativan for clinical anxiety. We parted ways with the previous psychiatrist when she refused to address the depression that plagues him. She kept trying to put him on strange meds for seizures that shut his brain down. And by shut it down, I mean he couldn't form sentences, couldn't concentrate to program (his favorite thing), couldn't process anything but the simplest of instructions, couldn't eat, sleep or show emotion. She felt that was a good trade off to control the depression. We did not agree.
Now, I feel I need to inject here that I firmly believe that medication should be the last resort. But someone needs a med for heart issues, you would give it to them. If someone was deaf, you would give them hearing aids. And if someone needs a med to control brain function, you give it to them. And medication is a route that has been necessary for kiddo, who would have likely killed himself at 10 years old.
Kiddo was taking Abilify, which is a nifty little drug that is similar to risperdal, except it does help with some aspects of depression. This would have been the miracle drug we were looking for except that kiddo experienced one major side effect. When he reached the proper dose, he couldn't eat. Everything he ate, he threw up. He dropped 20 lbs. in less than 3 wks. (3 wks. of constant vomiting) so we backed off the medication until he was taking a dosage that shouldn't have been doing anything according to the old pschiatrist. And still, some days even with that low dose and a prescription stomach med, he can't eat anything without praying to the porcelain god.
Well, the new psych pulled him off the Abilify and put him on a depression med (finally) Celexa. Only either the loss of the abilify or the introduction of the Celexa has caused him to swing into a bout of severe depression (the glass is not only half empty, you might as well just dump the rest & throw out the glass - and what's the point anyway). Yeah. Not good.
So now we've dropped the Celexa & we're adding back the Abilify for a week, then weaning him off it slowly to see if he improves/goes back on a downward spiral. If not, then we know it was caused the Celexa and we try something else. Meds for brain issues, you see, are a crap shoot. What works for one person may not work for another - and kiddo is wired very differently.
I don't know how long it will take to find the right balance of meds. I hope it won't be too long for his sake. (And for mine.)
In the meantime, I'm going to be the drill sargent of happy thoughts and fun. Oh yeah, you don't want to be around me when I'm Suzy Sunshine. I play happy 60's-80's music on the radio like the Monkees, Abba & the Bangles. I sing instead of talk. I break into spontaneous dance. I make a spectacle out of myself for a laugh. I am downright fucking scary.
(It is totally against my emo nature...but I've become very good at it. Now what should I sing first??....)
Now, I feel I need to inject here that I firmly believe that medication should be the last resort. But someone needs a med for heart issues, you would give it to them. If someone was deaf, you would give them hearing aids. And if someone needs a med to control brain function, you give it to them. And medication is a route that has been necessary for kiddo, who would have likely killed himself at 10 years old.
Kiddo was taking Abilify, which is a nifty little drug that is similar to risperdal, except it does help with some aspects of depression. This would have been the miracle drug we were looking for except that kiddo experienced one major side effect. When he reached the proper dose, he couldn't eat. Everything he ate, he threw up. He dropped 20 lbs. in less than 3 wks. (3 wks. of constant vomiting) so we backed off the medication until he was taking a dosage that shouldn't have been doing anything according to the old pschiatrist. And still, some days even with that low dose and a prescription stomach med, he can't eat anything without praying to the porcelain god.
Well, the new psych pulled him off the Abilify and put him on a depression med (finally) Celexa. Only either the loss of the abilify or the introduction of the Celexa has caused him to swing into a bout of severe depression (the glass is not only half empty, you might as well just dump the rest & throw out the glass - and what's the point anyway). Yeah. Not good.
So now we've dropped the Celexa & we're adding back the Abilify for a week, then weaning him off it slowly to see if he improves/goes back on a downward spiral. If not, then we know it was caused the Celexa and we try something else. Meds for brain issues, you see, are a crap shoot. What works for one person may not work for another - and kiddo is wired very differently.
I don't know how long it will take to find the right balance of meds. I hope it won't be too long for his sake. (And for mine.)
In the meantime, I'm going to be the drill sargent of happy thoughts and fun. Oh yeah, you don't want to be around me when I'm Suzy Sunshine. I play happy 60's-80's music on the radio like the Monkees, Abba & the Bangles. I sing instead of talk. I break into spontaneous dance. I make a spectacle out of myself for a laugh. I am downright fucking scary.
(It is totally against my emo nature...but I've become very good at it. Now what should I sing first??....)
Sunday, March 11, 2012
Platitudes ... A Venomous Vent (aka welcome to my pity party)
I have three phrases that I use to get through my days:
1. There but for the grace of God, go I.
2. That which doesn't kill you makes you stronger. (But it still sucks ass.)
3. This too shall pass.
They are my personal mantra, if you will - how I survive the worst of times - my platitudes to make things more bearable. I can live with these platitudes. The first is easy to understand, because honestly - as bad as my life gets, someone always has it worse. The second - its plain truth. If you can keep moving, you're alive, even if you don't want to be. And the third - another easy one to understand. It can only get so bad before something breaks and things improve. These are truths I can live with. What can't I live with?
People who say "He's so lucky to have you as a mother" or "God knew what he was doing when He made you his mother." What?? They're fucking kidding, right?
First off, growing up I said I was never going to get married or have kids. In fact, I told people that if I ever did get married, it would be in a black gown because it would be my funeral. (Guess I should have listened to myself.) My goal in life? To be free to do what I wanted. To not have to answer to anybody. Ever. I don't like responsibility. I have very little patience. I'm easily frustrated. I hate dealing with other people's issues (be it a cold or a case of the whinys). And I suffer from fairly profound depression, not to mention social anxiety. My depression has run the gamut from mild "life sucks and then you die" to "drive your car into a tree right now and get it over with already". I read the fucking obituaries daily for entertainment to see who died and how. My house looks like the beginning of a hoarder's secret fantasy, and 90% of the time I'm too overwhelmed to deal with it. I get annoyed at everything. How in God's name does that make me good parenting material? Never mind good parenting material for a kid with Aspergers?
You know what I wish people would say when I'm struggling? "I'm sorry. What can I do to help?" Or, how about, "Hey, let me take him for an afternoon. You go do something fun." I don't need to be told what an amazing person I am dealing with all this shit. I have no choice! I may never ever hold a job again, other than caring full time 24/7 for my kid. But I hate that ridiculous crap that comes out of their mouths. "God bless you, you're a wonderful mother" my ass.
Worse, people who tell me how glad they are that they don't have to deal with it (and believe me, this is family and friends, people). I don't want to hear how much you don't want to trade places with me. I don't need you to remind me how much my life sucks. I'm fucking living it.
And worse, my poor kiddo, who doesn't even know that other kids go hang out or spend overnights or weekends with relatives and friends. He's never spent any time away from me. He's fucking 17! His aunts have my niece over for weekends. My parents take her places all the time, buy her things, spoil her rotten. She gets phone calls and special gifts and fun times. He gets nothing. All he knows is that he's alone- other than me. Even his own father has no tolerance for him. No friends. No family that cares about him.
I visited my parents once last year. Once. Why? Because he's aware enough to notice the way he's treated. It hurts him. And what hurts him, hurts me. (God, I hope no one I know reads this... and if they do, they understand that I don't fault them. I just wouldn't do that myself.)
As for the in-laws....oh hell, I'm not even going there. Let's just say I've been told that all of his issues can be laid right at my feet and he wouldn't have Aspergers if I was a better parent. Like Aspergers isn't a disability that runs in their fucking family, along with anxiety, depression and OCD. They do at least make an effort to be nice to him ... until his Aspergers comes into play. And then the comments begin, directed at me. I beat myself up enough for my legitimate failures. I don't need to be kicked in the teeth for failures that genetics put into play.
So today I'm sulking. And I'm venting. And I'm wishing that life was a little nicer and didn't suck so much. And I'm hoping that this ugly angry bout of depression too will pass...
1. There but for the grace of God, go I.
2. That which doesn't kill you makes you stronger. (But it still sucks ass.)
3. This too shall pass.
They are my personal mantra, if you will - how I survive the worst of times - my platitudes to make things more bearable. I can live with these platitudes. The first is easy to understand, because honestly - as bad as my life gets, someone always has it worse. The second - its plain truth. If you can keep moving, you're alive, even if you don't want to be. And the third - another easy one to understand. It can only get so bad before something breaks and things improve. These are truths I can live with. What can't I live with?
People who say "He's so lucky to have you as a mother" or "God knew what he was doing when He made you his mother." What?? They're fucking kidding, right?
First off, growing up I said I was never going to get married or have kids. In fact, I told people that if I ever did get married, it would be in a black gown because it would be my funeral. (Guess I should have listened to myself.) My goal in life? To be free to do what I wanted. To not have to answer to anybody. Ever. I don't like responsibility. I have very little patience. I'm easily frustrated. I hate dealing with other people's issues (be it a cold or a case of the whinys). And I suffer from fairly profound depression, not to mention social anxiety. My depression has run the gamut from mild "life sucks and then you die" to "drive your car into a tree right now and get it over with already". I read the fucking obituaries daily for entertainment to see who died and how. My house looks like the beginning of a hoarder's secret fantasy, and 90% of the time I'm too overwhelmed to deal with it. I get annoyed at everything. How in God's name does that make me good parenting material? Never mind good parenting material for a kid with Aspergers?
You know what I wish people would say when I'm struggling? "I'm sorry. What can I do to help?" Or, how about, "Hey, let me take him for an afternoon. You go do something fun." I don't need to be told what an amazing person I am dealing with all this shit. I have no choice! I may never ever hold a job again, other than caring full time 24/7 for my kid. But I hate that ridiculous crap that comes out of their mouths. "God bless you, you're a wonderful mother" my ass.
Worse, people who tell me how glad they are that they don't have to deal with it (and believe me, this is family and friends, people). I don't want to hear how much you don't want to trade places with me. I don't need you to remind me how much my life sucks. I'm fucking living it.
And worse, my poor kiddo, who doesn't even know that other kids go hang out or spend overnights or weekends with relatives and friends. He's never spent any time away from me. He's fucking 17! His aunts have my niece over for weekends. My parents take her places all the time, buy her things, spoil her rotten. She gets phone calls and special gifts and fun times. He gets nothing. All he knows is that he's alone- other than me. Even his own father has no tolerance for him. No friends. No family that cares about him.
I visited my parents once last year. Once. Why? Because he's aware enough to notice the way he's treated. It hurts him. And what hurts him, hurts me. (God, I hope no one I know reads this... and if they do, they understand that I don't fault them. I just wouldn't do that myself.)
As for the in-laws....oh hell, I'm not even going there. Let's just say I've been told that all of his issues can be laid right at my feet and he wouldn't have Aspergers if I was a better parent. Like Aspergers isn't a disability that runs in their fucking family, along with anxiety, depression and OCD. They do at least make an effort to be nice to him ... until his Aspergers comes into play. And then the comments begin, directed at me. I beat myself up enough for my legitimate failures. I don't need to be kicked in the teeth for failures that genetics put into play.
So today I'm sulking. And I'm venting. And I'm wishing that life was a little nicer and didn't suck so much. And I'm hoping that this ugly angry bout of depression too will pass...
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