I'm making a face after that heading, because I know KNOW how my life rolls. There is no set time or day when I'll get the chance to blog about life and my take on it. Sometimes I go for weeks or months with my head tucked down, surviving on pure granite determination to get through each second of each minute of each day.
I was at the grocery store the other day, standing in line. As my turn approached, I noticed the cashier and the girl bagging were giggling. "Did you see that tee shirt?" I heard the cashier whisper in a not-so-whispery voice. "I know!" The bagger exclaimed. "I'd take a picture for my boyfriend, but its just too scary." They dissolved into fits of laughter. Then it was my turn to be rung up. They looked at each other and burst into more giggles. "I'm sorry," the cashier said. "Private joke."
I knew they were laughing at me. While it pissed me off, it also brought me back to high school and the pathetic social anxiety I struggled with. I endured so much bullying by the popular girls back then because I was so painfully shy I wouldn't stand up for myself. I'd prefer to forget that high school me existed.
So, the first thing you need to know about me is that I'm a geek. I was born a geek. I will die a geek. I'm happiest that way and I don't give a shit what society says I'm supposed to be. It's taken me 50 years to get to this place. (Okay, I'm 50 and I'm still not sure I'm at that place but I fake it really well most of the time.)
My tee shirt - the tee shirt they were making fun of, I'm assuming because I am 50 years old and had the nerve to be so comfortable wearing it that I didn't even think twice running out to the store in it - is from Ript Apparel, where I buy most of my tee shirts. The design on it is the Death Star from Star Wars, only instead of it being gray, the Death Star is red and white, with a gray band down the middle and its a fucking pokeball! Yes, I was wearing a PokeDeathStar. It is AWESOME.
And yet these two high school age girls managed to make me feel like a ridiculous freak in it.
First of all, I fucking LOVE Star Wars. When it first came out, I was a teenager about their age. I lived in a small rural town with 2 movie theatres. Star Wars was playing at the Paramount Theatre - one of those old cinemas with the huge screen, velvet seats with wooden arms, a balcony, church-like sconces along the walls and gilding everywhere. It was the brass gonads of movie theatres. (It burned down a few years later.)
Annnywayyy.... Star Wars was the first movie I ever saw that spoke to that geek in me. It reached into my soul and captured it. I don't know how many times I saw the movie that summer, but I know it played all summer. We would go for the early showing with our popcorn and soda (they allowed you to bring your own) and stay right through the second showing on Saturdays. I wanted to be Luke Skywalker, Obi Wan and Han Solo, even if I was a girl. I'd always been an avid reader - and loved science fiction books - but to have a story come to life like that? Well, it was magical.
I have loved that movie from the first time I saw it and I still love watching it today. (The old version - not the crapped out, digitally reinvented version.) Han Solo shot first, goddamn it. (Just sayin'.)
Second, I have a kid with Aspergers Syndrome. For those who don't know, Aspies often have specialized interests. My son was big into pokemon from the age of four until he was sixteen. Since he didn't really relate to other kids (in other words, he was bullied/tortured for being different), I had to be his friend in addition to his mother. This meant playing games with him and immersing myself in his world to have conversations with him. I know every fucking pokemon and can probably recite them in order along with their moves from the first gen of pokemon. In fact, I probably know more about pokemon than most pokemon fanatics.
When I saw this shirt, I fell in love. It was my interests wrapped with my son's interests into this beautiful work of art that I can wear whenever I want to. This shirt is so me its not funny. And these two teenage girls reduced it and me to a laughing stock.
I'd like to say I made a comment. I'd like to say I told them to go fuck themselves. But I didn't. I silently stood there - like teenage me would have 35 years ago - and let them laugh at me. I paid for my groceries, refused the bagger's help and raced from the store with embarrassment. And it pisses me off more than you can imagine.
Monday, April 29, 2013
Sunday, March 31, 2013
Holidays, Religion and Me
Today is Easter, which for me is a pretty sacred holiday. I was raised a devout Catholic in rural Vermont. Until I was somewhere around ten years old, the masses were still done in Latin and women were expected to wear kerchiefs or hats with veils on their heads. If you forgot yours, you couldn't enter the church.
My mother sometimes circumvented that with kleenex.
In my parent's household being Catholic meant that every Sunday and Holy Day, we went to church. We were also required to regularly attend confession once we were old enough and attend catechism classes.
Somewhere along the lines, I started to see religion as less than holy.
When I was thirteen, that belief solidified. My father had taken us to church for confession. My sister went first, and then my father. I was last to enter the confessional, a place that to this day makes me nervous. The priest slid open the little window and I looked at the shadow of him behind that grate. I began with the typical "Forgive me father for I have sinned..." And then I confessed how I had argued with my mother about something trivial. My parents were very strict and didn't tolerate bad behavior. This particular fight, which I can't even remember, was nothing unusual or horrible. Just a small rebellion on my part over doing the dishes or cleaning my room or something. I'd been punished - I don't remember how. Sent to bed without dinner or maybe grounded for a week.
The priest listened to my confession and then scolded me a bit for my sins. Then he handed down my punishment: he wanted me to say 100 Our Fathers, 100 Hail Marys, 50 Acts of Contrition, 50 Prayers to the Holy Spirit, and 25 Prayers to My Guardian Angel.
I was the last confession of the day.
When I left the confessional, my father was standing at the back of the church waiting for me. I scooted into the closest booth to the confessional and knelt to begin my prayers. The priest followed me out and chose a seat directly behind me.
"Aloud," he told me. So I began to recite the Our Father aloud. Whenever I picked up speed or slowed down or spoke softer, he would place his hand on my shoulder and tell me to begin again.
At some point, my father left. He went home, never questioning what the priest was doing or why. He left me there, in that church, alone with that priest for more than two hours while I worked my way through the prayers. We were the only two people in the church.
To this day, I wonder what the priest was doing as he sat behind me dragging out my punishment.
I missed dinner. It was nearly 7 pm when I walked out of that church. My father was waiting in his car, although he'd gone home and had dinner himself. The priest trailed me to my father's car, with his hand on my shoulder and explained to my father that I'd been a bad girl and had been punished.
He made me apologize to my father again. And then he left.
When I climbed in the car, I remember looking at my father who looked disappointed in me - although he had no idea what I'd done, he immediately accepted the priest's claim that I was a bad girl - and told him that I was never NEVER going to set foot in a confessional again. I said I would pray to God for forgiveness for mistakes I made not a priest.
There must have been something in my face - or perhaps he realized he'd made a mistake - because he accepted that and never made me go to confession again.
When I left home for college, I stopped going to church altogether.
In my house we celebrate many holidays, and we celebrate them low-key. If I were to believe the Catholic religion (and my parents), I'm not actually married since our wedding ceremony was performed by a Justice of the Peace. I had no desire to force my husband to attend religious classes so that the Church would recognize our marriage. And that in the eyes of the church, my son was born a bastard. My husband is Jewish. My son, although baptized Catholic, is agnostic. Or as he likes to say, he's "eclectic". I've never forced formal religion on him, although I've given him a solid belief in something more than him.
He has the added bonus of being born with Aspergers Syndrome, a form of autism. The Church until recently exorcised children with autism because they believed them possessed (I actually think this still goes on because I've heard stories). The Church also doesn't like to provide religious education to children like mine because they question everything. Had I wanted him educated Catholic, he would have been turned away.
My son believes that science explains most things, but that science cannot explain everything. He believes the truth of God is found somewhere in the teachings of all religions since they share many stories. He understands that they are all right and all wrong in different ways. He accepts there is more out there than we know and he has a strong moral foundation. I think that's good enough.
As for me, I've been a lapsed Catholic for a long time. I love Mass, but I don't go except on Christmas and for the Stations of the Cross. I like to think God and I have an understanding. I have intense faith but I don't shove it on others and I don't need a church to practice it. I believe in many things that the Church doesn't - and I'm happier for it.
But today is still Easter and it's still holy, so Happy Easter to those of you who celebrate it today. And for those of you of the Jewish faith, Happy Passover. May whatever God you believe in smile down on you today and bless you with joy.
Karen
My mother sometimes circumvented that with kleenex.
In my parent's household being Catholic meant that every Sunday and Holy Day, we went to church. We were also required to regularly attend confession once we were old enough and attend catechism classes.
Somewhere along the lines, I started to see religion as less than holy.
When I was thirteen, that belief solidified. My father had taken us to church for confession. My sister went first, and then my father. I was last to enter the confessional, a place that to this day makes me nervous. The priest slid open the little window and I looked at the shadow of him behind that grate. I began with the typical "Forgive me father for I have sinned..." And then I confessed how I had argued with my mother about something trivial. My parents were very strict and didn't tolerate bad behavior. This particular fight, which I can't even remember, was nothing unusual or horrible. Just a small rebellion on my part over doing the dishes or cleaning my room or something. I'd been punished - I don't remember how. Sent to bed without dinner or maybe grounded for a week.
The priest listened to my confession and then scolded me a bit for my sins. Then he handed down my punishment: he wanted me to say 100 Our Fathers, 100 Hail Marys, 50 Acts of Contrition, 50 Prayers to the Holy Spirit, and 25 Prayers to My Guardian Angel.
I was the last confession of the day.
When I left the confessional, my father was standing at the back of the church waiting for me. I scooted into the closest booth to the confessional and knelt to begin my prayers. The priest followed me out and chose a seat directly behind me.
"Aloud," he told me. So I began to recite the Our Father aloud. Whenever I picked up speed or slowed down or spoke softer, he would place his hand on my shoulder and tell me to begin again.
At some point, my father left. He went home, never questioning what the priest was doing or why. He left me there, in that church, alone with that priest for more than two hours while I worked my way through the prayers. We were the only two people in the church.
To this day, I wonder what the priest was doing as he sat behind me dragging out my punishment.
I missed dinner. It was nearly 7 pm when I walked out of that church. My father was waiting in his car, although he'd gone home and had dinner himself. The priest trailed me to my father's car, with his hand on my shoulder and explained to my father that I'd been a bad girl and had been punished.
He made me apologize to my father again. And then he left.
When I climbed in the car, I remember looking at my father who looked disappointed in me - although he had no idea what I'd done, he immediately accepted the priest's claim that I was a bad girl - and told him that I was never NEVER going to set foot in a confessional again. I said I would pray to God for forgiveness for mistakes I made not a priest.
There must have been something in my face - or perhaps he realized he'd made a mistake - because he accepted that and never made me go to confession again.
When I left home for college, I stopped going to church altogether.
In my house we celebrate many holidays, and we celebrate them low-key. If I were to believe the Catholic religion (and my parents), I'm not actually married since our wedding ceremony was performed by a Justice of the Peace. I had no desire to force my husband to attend religious classes so that the Church would recognize our marriage. And that in the eyes of the church, my son was born a bastard. My husband is Jewish. My son, although baptized Catholic, is agnostic. Or as he likes to say, he's "eclectic". I've never forced formal religion on him, although I've given him a solid belief in something more than him.
He has the added bonus of being born with Aspergers Syndrome, a form of autism. The Church until recently exorcised children with autism because they believed them possessed (I actually think this still goes on because I've heard stories). The Church also doesn't like to provide religious education to children like mine because they question everything. Had I wanted him educated Catholic, he would have been turned away.
My son believes that science explains most things, but that science cannot explain everything. He believes the truth of God is found somewhere in the teachings of all religions since they share many stories. He understands that they are all right and all wrong in different ways. He accepts there is more out there than we know and he has a strong moral foundation. I think that's good enough.
As for me, I've been a lapsed Catholic for a long time. I love Mass, but I don't go except on Christmas and for the Stations of the Cross. I like to think God and I have an understanding. I have intense faith but I don't shove it on others and I don't need a church to practice it. I believe in many things that the Church doesn't - and I'm happier for it.
But today is still Easter and it's still holy, so Happy Easter to those of you who celebrate it today. And for those of you of the Jewish faith, Happy Passover. May whatever God you believe in smile down on you today and bless you with joy.
Karen
Sunday, December 2, 2012
Nobody Tells You...
Nobody tells you that when you grow up, you're not going to be a princess because princesses are born not made...
Nobody tells you that Prince Charming is not going to ride in on a white steed with the sun at his back ready to rescue you because men don't like horses and they don't think like that anyway...
Nobody tells you that if you want to be rescued, you have to rescue yourself because you'll do the best job of it...
Nobody tells you that the hardest person to love will be yourself...
Nobody tells you that the second hardest person to love is the one you go to sleep next to every night and wake up next to every morning...
Nobody tell you that your house will never look clean and the work will never be done no matter how many hours you put into it...
Nobody tells you that being a mother is the hardest job that you'll ever do and you'll always feel like a failure no matter how hard you work at it...
Nobody tells you that your life will take twists and turns that you don't expect and they'll knock you on your ass and leave you beaten and bloodied and lost...
Nobody tells you that not all children are born whole and that yours could have a disability that will make their life and yours living hell...
Nobody tells you that some children are never able to leave home...
Nobody tells you that people are, for the most part, selfish and unkind...
Nobody tells you that people will abandon you for no other reason than that they just don't want to allow your shit to touch their lives...
Nobody tells you that sometimes your home becomes your prison...
Nobody tells you that most of the time getting up in the morning will feel like a death sentence...
Nobody tells you that life is cruel and never fair...
Nobody tells you that living is the hardest choice and death is the easiest...
Nobody tells you that hope is a four letter word...
Nobody tells you that you'll be sitting on your couch at 5 a.m. writing because your child, who is no longer a child, woke you up at 4 a.m. because he picked a mole on his back and has convinced himself that its cancer and wants to be rushed to the hospital in Boston because its bleeding and he's convinced he's going to die and that he will start screaming at you when you tell him its okay its just a mole and its not bleeding anymore and that he'll tell you he hates you and that you're a bitch and he wishes you were dead because you refuse to rush him to the hospital for something that left a spot of blood smaller than a dime on his tee shirt and is no longer bleeding and is a mole that he's had on his back since he was a tiny baby and that he will start vomiting because he saw blood and that he will wake up the entire house and terrify the dog and cat because he insists that he's never had this mole even though you can show him pictures with it and he'll insist that its a weird growth that has to be cancer and that you don't understand him and never will and he'll swear and say he hates you and call you more horrible names that will leave you numb and then he'll leave you standing in your kitchen wondering what the hell just happened and afraid to go to bed because he might decide to hurt himself or you while you're sleeping because he stopped taking his meds months ago and he refuses to take them and he's been volatile since then but he refuses to see how out of control he has become because he thinks he's fine and the problem is all yours which it is...
Nobody tells you that.
Nobody tells you that Prince Charming is not going to ride in on a white steed with the sun at his back ready to rescue you because men don't like horses and they don't think like that anyway...
Nobody tells you that if you want to be rescued, you have to rescue yourself because you'll do the best job of it...
Nobody tells you that the hardest person to love will be yourself...
Nobody tells you that the second hardest person to love is the one you go to sleep next to every night and wake up next to every morning...
Nobody tell you that your house will never look clean and the work will never be done no matter how many hours you put into it...
Nobody tells you that being a mother is the hardest job that you'll ever do and you'll always feel like a failure no matter how hard you work at it...
Nobody tells you that your life will take twists and turns that you don't expect and they'll knock you on your ass and leave you beaten and bloodied and lost...
Nobody tells you that not all children are born whole and that yours could have a disability that will make their life and yours living hell...
Nobody tells you that some children are never able to leave home...
Nobody tells you that people are, for the most part, selfish and unkind...
Nobody tells you that people will abandon you for no other reason than that they just don't want to allow your shit to touch their lives...
Nobody tells you that sometimes your home becomes your prison...
Nobody tells you that most of the time getting up in the morning will feel like a death sentence...
Nobody tells you that life is cruel and never fair...
Nobody tells you that living is the hardest choice and death is the easiest...
Nobody tells you that hope is a four letter word...
Nobody tells you that you'll be sitting on your couch at 5 a.m. writing because your child, who is no longer a child, woke you up at 4 a.m. because he picked a mole on his back and has convinced himself that its cancer and wants to be rushed to the hospital in Boston because its bleeding and he's convinced he's going to die and that he will start screaming at you when you tell him its okay its just a mole and its not bleeding anymore and that he'll tell you he hates you and that you're a bitch and he wishes you were dead because you refuse to rush him to the hospital for something that left a spot of blood smaller than a dime on his tee shirt and is no longer bleeding and is a mole that he's had on his back since he was a tiny baby and that he will start vomiting because he saw blood and that he will wake up the entire house and terrify the dog and cat because he insists that he's never had this mole even though you can show him pictures with it and he'll insist that its a weird growth that has to be cancer and that you don't understand him and never will and he'll swear and say he hates you and call you more horrible names that will leave you numb and then he'll leave you standing in your kitchen wondering what the hell just happened and afraid to go to bed because he might decide to hurt himself or you while you're sleeping because he stopped taking his meds months ago and he refuses to take them and he's been volatile since then but he refuses to see how out of control he has become because he thinks he's fine and the problem is all yours which it is...
Nobody tells you that.
Saturday, September 1, 2012
College Looms ... So Do Panic Attacks
Tomorrow kiddo heads off to college.
This is a huge undertaking for your typical 18 year old. There are so many things that can go wrong, so many stresses and challenges. I had a roommate who liked to lie around naked and masturbate. It didn't matter who was watching. My sister had a roommate who stole anything that wasn't locked up from food to clothes to toothpaste.
Now imagine you're a year younger than incoming freshmen, but you're already a sophomore. And imagine you've been educated in special ed classrooms for elementary school, by tutors and your mother for middle school, and dropped out one month into 10th grade and got your GED. Now imagine you have difficulty reading people's faces, understanding sarcasm, and in general struggle with social situations.
Do I think he can do it? By sheer force of will and perseverence, yes he can. Will he? I don't know. I've prepared him as best I can for situations he may run into. I've coached him on the best ways to deal with people who he has trouble with. But I can't hold his hand forever and he wants to get out there and give it a shot.
Cross your fingers everybody. My little bird is about to try to fly.
This is a huge undertaking for your typical 18 year old. There are so many things that can go wrong, so many stresses and challenges. I had a roommate who liked to lie around naked and masturbate. It didn't matter who was watching. My sister had a roommate who stole anything that wasn't locked up from food to clothes to toothpaste.
Now imagine you're a year younger than incoming freshmen, but you're already a sophomore. And imagine you've been educated in special ed classrooms for elementary school, by tutors and your mother for middle school, and dropped out one month into 10th grade and got your GED. Now imagine you have difficulty reading people's faces, understanding sarcasm, and in general struggle with social situations.
Do I think he can do it? By sheer force of will and perseverence, yes he can. Will he? I don't know. I've prepared him as best I can for situations he may run into. I've coached him on the best ways to deal with people who he has trouble with. But I can't hold his hand forever and he wants to get out there and give it a shot.
Cross your fingers everybody. My little bird is about to try to fly.
Monday, July 23, 2012
Epitheliod Hemangioendothelioma (try saying that fast)
So, we got to see the pathology report today. The official diagnosis is epitheliod hemangioendothelioma. What is that, you ask? Its a malignant vascular cancer. In kiddo's case, it grew rapidly (at least as far as we noticed). From July 4th when he pointed it out to me, until July 5th when we took him to the ER, it had changed into a meatier feeling thing. By July 11th, when it was removed, it had grown, was protruding significantly more and had a dark appearance.
No one knows what causes this particular form of cancer. But its what kiddo has. It is a low grade cancer, but with a high metastatic rate (meaning it wants to spread) and because they removed it thinking it was a blood clot, there's no guarantee they got it all and that they didn't do more damage than good.
We see a medical oncologist tomorrow at Dana Farber Cancer Institute in Boston to find out what that all means.
Kiddo has decided to forgo college - something he was looking forward to until we heard the words malignant cancer. His thoughts are that he has Aspergers Syndrome and a rare cancer - how is anyone going to relate to him? I can't argue it. I just want to spend every minute of every day in his presence. Life is too short.
We're making a bucket list. He wants to go to New York, shop for anime, see the statue of liberty, ellis island and the empire state building. He'd like to see David Letterman live.
He'd also like to go to Japan. That's a loftier goal and I don't know that its possible, but we'll see. I'd do just about anything to give him what he wants. He doesn't ask for much.
He's been keeping himself occupied working on his computer cluster. He can now access it remotely from both his laptop and phone, so that should he end up on an extended stay in the hospital, he can work on his secret project. (A revolutionary program for computer users everywhere.)
He's genius enough to accomplish it.
Today is an anxious day. It's a sad day. I find myself leaking tears without even realizing it. Tomorrow we will know the extent of what we're facing. What he's facing. Until then, I just have to breathe.
Karen
No one knows what causes this particular form of cancer. But its what kiddo has. It is a low grade cancer, but with a high metastatic rate (meaning it wants to spread) and because they removed it thinking it was a blood clot, there's no guarantee they got it all and that they didn't do more damage than good.
We see a medical oncologist tomorrow at Dana Farber Cancer Institute in Boston to find out what that all means.
Kiddo has decided to forgo college - something he was looking forward to until we heard the words malignant cancer. His thoughts are that he has Aspergers Syndrome and a rare cancer - how is anyone going to relate to him? I can't argue it. I just want to spend every minute of every day in his presence. Life is too short.
We're making a bucket list. He wants to go to New York, shop for anime, see the statue of liberty, ellis island and the empire state building. He'd like to see David Letterman live.
He'd also like to go to Japan. That's a loftier goal and I don't know that its possible, but we'll see. I'd do just about anything to give him what he wants. He doesn't ask for much.
He's been keeping himself occupied working on his computer cluster. He can now access it remotely from both his laptop and phone, so that should he end up on an extended stay in the hospital, he can work on his secret project. (A revolutionary program for computer users everywhere.)
He's genius enough to accomplish it.
Today is an anxious day. It's a sad day. I find myself leaking tears without even realizing it. Tomorrow we will know the extent of what we're facing. What he's facing. Until then, I just have to breathe.
Karen
Wednesday, July 18, 2012
I dont know what to say...
Today we saw the doctor for kiddo's surgery follow up. We assumed he would check the wound and send us on our way. That didnt happen.
Sigh...
Kiddo has cancer. He has a vascular tumor thats malignant. Its rare, there are only about 200 people diagnosed with it each year. They dont know what causes it. There is no known effective treatment.
I'm pretty sure I'm in shock.
We've been referred to a cancer specialist at Dana Farber Cancer Institute to determine what the next step is.
Yup. That was my day. Kiddo is handling it well ... Better than me, honestly. The aspergers may be a saving grace through this. It is today, thats for sure.
Karen
Saturday, July 14, 2012
Aspergers isnt curable! Accept it.
This is a tough post for me because it brings home the daily difficulty of living with aspergers syndrome. In order to explain, I have to go back a week...
On Wed., July 4th, kiddo called my attention to a lump on his abdomen. It was about the size of an egg and protruding just above his right hip. There was the tiniest mark of a bruise, already fading. I assumed he'd banged into something and told him not to worry about it. The next day, he showed it to me again. It looked different - bigger and darker, and it felt (for lack of a better word) meaty. We took him to the ER. The did an ultrasound and discovered a mass. A follow up xray showed no other abnormalities in his abdomen, so the surgeon on call came in and talked to us. He said to call his office in the morning and arrange an office visit to remove it for this week. He also urged us to return to the hospital if anything changed. None of us slept that night as we worried about the possibilities (tumor, cancer) that this weird mass represented.
We called the next morning and set up an appointment for Wed. But late Fri. Night kiddo freaked out. He was convinced the thing was getting bigger and attaching to his organs. In looking at it, it was definitely sticking out more and it felt hot. So back to the hospital we went. We spent the night there and they did a CAT scan, which showed the mass wasn't growing, but was pushing out more. They said it was a mass of tissue and blood, and sent us home.
Over the next few days, we stressed about it. I dont think any of us slept more than an hour per night. On Wed., we went to the surgeon's office. He felt removing the mass could be done right there, so he gave kiddo a local numbing agent in a series of shots, cut him open and popped out the mass. And thats when things went horribly wrong. The mass was a blood clot and it was the only thing keeping a ruptured vein from gushing. The surgeon had an 'oh shit' moment where I could see him debating whether to call an ambulance or deal with it. He dealt with it. What ensued was a half hour of major surgery where kiddo got the vein stiched, mutiple things cauterized, four layers of sutures and a top layer of tape. There was a lot of blood, some screaming from the pain of a procedure that he should have been unconscious for, and a whole lot of shots to deal with the pain.
I think this may have been what it was like to undergo surgery in the days when they gave you a bullet to bite on -- only a lot more sanitary.
In the end, kiddo had an incision 2+ inches long and 1+ inches deep. We go back next Wed. To make sure everything is healing properly.
And all of that is not what has me so upset today.
See, kiddo's bandage needed to be changed today. His aunt is a nurse and a wound specialist. Since he's still so freaked out about everything, he wanted her to change the dressing. She and my brother-in-law came over. While she changed the bandages, my B-I-L proceeded to unmercifully tease kiddo. Kiddo asked him repeatedly to stop. He wasnt finding it funny. I asked him to stop because I thought he was being an ass, and I could see it was upsetting kiddo. Hubs asked him to stop repeatedly, as well. But he just kept on with the snarky rudeness....
And thats when kiddo flipped him off. B-I-L called him rude, scolded him, stood up and stormed out of the house. Kiddo tried to apologize, but got shit back for it.
S-I-L finished up what she was doing and followed him out. I chased after them. And thats when s-i-l said this...
She told me that kiddo had better learn how to take teasing, because he cant go around reacting to people like that. That he needs to learn the world wont tolerate his differences or his disability. That he needs to learn that people are going to tease and him and he needs to take it. That his disability is not an excuse for bad behavior and that nobody is going to want to have anything to do with him. That if he thinks he can get away with blaming his behavior on his disability, he's mistaken. That he needs to grow up and gain a little maturity. Then she suggested that I have his psychologist work on that with him.
Yeah.
I want people to know that aspergers is not something you 'grow out of'. Not understanding social nuances or bullying behavior? Not gonna change with maturity. I dont understand how people can behave the way my b-i-l was behaving, and not take into account that the person theyre teasing mercilessly is being hurt by it - and they dont stop or give a shit.
Kiddo's brain is wired differently. He doesnt get it. He'll never get it.
I'm thankful that he's survived the cruelty visited on him by people. He hasnt taken his life yet, tho he's contemplated it pretty seriously. He's here and he is who he is - disability and all. I don't think he's the one who needs to grow up or get counseling.
And thats what has me upset.
If family doesnt make any effort to understand his disability, why will the rest of the world?
Love your kids, people. Accept them for who they are. Each and every one of them is beautiful. The world is not.
Kiddo cried for an hour and talked about how much he hates himself after they left. He blames himself for what happened. He'll carry that moment forever. The moment his uncle finally let him know just how little he cares about him.
And I will carry my sister-in-law's words.
At least now I know for sure why we're excluded from things. I though I'd offended them somehow. But its not me and its not kiddo. It's their inability to accept him for who he is.
Think before you act. Be aware of others' differences. Accept them.
You cant take back that kind of damage.
On Wed., July 4th, kiddo called my attention to a lump on his abdomen. It was about the size of an egg and protruding just above his right hip. There was the tiniest mark of a bruise, already fading. I assumed he'd banged into something and told him not to worry about it. The next day, he showed it to me again. It looked different - bigger and darker, and it felt (for lack of a better word) meaty. We took him to the ER. The did an ultrasound and discovered a mass. A follow up xray showed no other abnormalities in his abdomen, so the surgeon on call came in and talked to us. He said to call his office in the morning and arrange an office visit to remove it for this week. He also urged us to return to the hospital if anything changed. None of us slept that night as we worried about the possibilities (tumor, cancer) that this weird mass represented.
We called the next morning and set up an appointment for Wed. But late Fri. Night kiddo freaked out. He was convinced the thing was getting bigger and attaching to his organs. In looking at it, it was definitely sticking out more and it felt hot. So back to the hospital we went. We spent the night there and they did a CAT scan, which showed the mass wasn't growing, but was pushing out more. They said it was a mass of tissue and blood, and sent us home.
Over the next few days, we stressed about it. I dont think any of us slept more than an hour per night. On Wed., we went to the surgeon's office. He felt removing the mass could be done right there, so he gave kiddo a local numbing agent in a series of shots, cut him open and popped out the mass. And thats when things went horribly wrong. The mass was a blood clot and it was the only thing keeping a ruptured vein from gushing. The surgeon had an 'oh shit' moment where I could see him debating whether to call an ambulance or deal with it. He dealt with it. What ensued was a half hour of major surgery where kiddo got the vein stiched, mutiple things cauterized, four layers of sutures and a top layer of tape. There was a lot of blood, some screaming from the pain of a procedure that he should have been unconscious for, and a whole lot of shots to deal with the pain.
I think this may have been what it was like to undergo surgery in the days when they gave you a bullet to bite on -- only a lot more sanitary.
In the end, kiddo had an incision 2+ inches long and 1+ inches deep. We go back next Wed. To make sure everything is healing properly.
And all of that is not what has me so upset today.
See, kiddo's bandage needed to be changed today. His aunt is a nurse and a wound specialist. Since he's still so freaked out about everything, he wanted her to change the dressing. She and my brother-in-law came over. While she changed the bandages, my B-I-L proceeded to unmercifully tease kiddo. Kiddo asked him repeatedly to stop. He wasnt finding it funny. I asked him to stop because I thought he was being an ass, and I could see it was upsetting kiddo. Hubs asked him to stop repeatedly, as well. But he just kept on with the snarky rudeness....
And thats when kiddo flipped him off. B-I-L called him rude, scolded him, stood up and stormed out of the house. Kiddo tried to apologize, but got shit back for it.
S-I-L finished up what she was doing and followed him out. I chased after them. And thats when s-i-l said this...
She told me that kiddo had better learn how to take teasing, because he cant go around reacting to people like that. That he needs to learn the world wont tolerate his differences or his disability. That he needs to learn that people are going to tease and him and he needs to take it. That his disability is not an excuse for bad behavior and that nobody is going to want to have anything to do with him. That if he thinks he can get away with blaming his behavior on his disability, he's mistaken. That he needs to grow up and gain a little maturity. Then she suggested that I have his psychologist work on that with him.
Yeah.
I want people to know that aspergers is not something you 'grow out of'. Not understanding social nuances or bullying behavior? Not gonna change with maturity. I dont understand how people can behave the way my b-i-l was behaving, and not take into account that the person theyre teasing mercilessly is being hurt by it - and they dont stop or give a shit.
Kiddo's brain is wired differently. He doesnt get it. He'll never get it.
I'm thankful that he's survived the cruelty visited on him by people. He hasnt taken his life yet, tho he's contemplated it pretty seriously. He's here and he is who he is - disability and all. I don't think he's the one who needs to grow up or get counseling.
And thats what has me upset.
If family doesnt make any effort to understand his disability, why will the rest of the world?
Love your kids, people. Accept them for who they are. Each and every one of them is beautiful. The world is not.
Kiddo cried for an hour and talked about how much he hates himself after they left. He blames himself for what happened. He'll carry that moment forever. The moment his uncle finally let him know just how little he cares about him.
And I will carry my sister-in-law's words.
At least now I know for sure why we're excluded from things. I though I'd offended them somehow. But its not me and its not kiddo. It's their inability to accept him for who he is.
Think before you act. Be aware of others' differences. Accept them.
You cant take back that kind of damage.
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