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.

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.

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.

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. 


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.

Thursday, April 26, 2012

Aspergers Awareness #2

When Jay was little, he was such a funny kid. If I told him to stop being fresh, he would look at me and say "I'm fresh and juicy." I have no idea where he came up with this, but it cracked me up every time.

He was also smart as a whip. Starting when he was about 9 mos. old, we would sit together and play kiddie games on the computer - he was fascinated by the computer even then. One day, when he was about 18 mos. old, I got up and left him playing by himself to use the bathroom. While in the bathroom, I heard "*ding ding ding* You've got mail!" I hollered to him, "Jay, what are you doing?" He replied, "I'm getting your mail, Momma." Not only had he shut down the game we were playing, he'd gone into AOL and logged onto my email with my password and retrieved my email. At 18 months! I was astounded.

He started spontaneously reading at 2 years old. To this day, I have no idea how he did it, but one day we were driving down the highway and a Hood Milk truck passed us. "Hood Milk. It does a body good," he chirped from the backseat. I remember my husband turning to me and saying, "You let him watch too much television." I knew that wasn't the case, so I asked what the next sign we passed said. Jay read it. And he read everything else we pointed out to him. Not only that, he knew numbers. We discovered he could count to 100 and beyond! Oh, my boy was brilliant.

At 2 yrs., 4 mos., he wrote his name on the wall. By the time he was 2 yrs., 9 mos., he was writing me notes. "I love you, Momma." He wouldn't even entertain using crayons to color, but he could write - and he could draw. He loved to draw pictures of Inspector Gadget, with all kinds of elaborate devices attached to him.

Despite that high intelligence, there was another side to Jay. At our local play gym program, if he was bumped by another child, he would go ballistic. He loved the teacher and followed her rules to the T most of the time, but would freak out with some activities and throw tantrums that made me cringe. He loved making crafts with me, but couldn't stand anything sticky on his skin. Glue was an absolute deal breaker. It made him crazy.

He didn't like the radio. If I put on music, he would scream like he was being murdered, storm over and shut it off. He didn't like "kersplunchity food" like McDonald's chicken nuggets. He didn't like being held. But he would back into my lap and let me wrap my arms around him in a bear hug when he wanted it. He would turn lights on and off, or open and close cabinet doors over and over, usually rapidly blinking his eyes while he did it. He would buzz things back and forth in front of his face in an arc. Over and over.

I talked to family members. I talked to the play gym teacher. I talked to my husband. I talked to the pediatrician. They all said the same thing - I worried to much. He was fine. He was a boy. I was being a worry wart...or in the case of the pediatrician, a nervous mother. I needed to chill out. He was fine.

By two, his language was so extensive he sounded like an adult. I didn't use baby talk with him. You can't use baby talk with a toddler who wants to discuss the human genome.

One day, we were at the bookstore and we were discussing molecules and atoms. He was about three years old. An elderly woman was watching us out of the corner of her eye, a smile on her face. She walked over to me and said, "Oh my goodness, he's so smart." I proudly said, "Yes, he is." "How old is he?" she asked. I told her. I could tell she was impressed. Then she turned to Jay, leaned down to his level and in a sing-song voice started talking baby-talk to him. He looked at her from his stroller and I could see how angry he was. "Don't talk to me like that! I'm not stupid," he snapped. (I kid you not - those were his words.) She reeled back like he'd hit her, turned to me and in the most austere, angry voice she could muster said, "What a nasty rude little brat. If he was mine, I'd smack him good." She leaned down and said to him, "You're a very bad boy." I was so shocked, I froze. She stormed off. Jay started to cry. We had to leave the store because he was so distraught, saying over and over, "I'm a bad boy. I'm a bad boy."


It was my introduction into what our lives would become.

Wednesday, April 25, 2012

Aspergers Awareness #1

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.

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.

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.

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?

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.

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??....)

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...

Friday, February 24, 2012

Stealing Kittens and Weird Dreams??

I have no idea what this means, but the last couple of nights I've had a repeating dream. In it, I live in a trailer on an overgrown lot. Across the street from me is a weathered gray house with an enclosed porch, also on an overgrown lot. It has a stone wall out front. We seem to be at the end of a cul-de-sac. The owner of this house, a woman in her late 20's or early 30's, is slightly chunky and dressed in jeans and a plum colored long-sleeve tee shirt. She has long brown hair. I know I don't like her.

She has cats. Lots of cats. There are cats everywhere. And there are kittens that keep running out into the street. I'm desperately worried that something bad is going to happen to these kittens. We have several arguments about the kittens getting run over. She's not worried about it, but I am. (This is one whackadoo dream, hunh?) So, I sneak over to her yard during the night and steal a cute little orange tabby kitten.

I stuff it in a carry case and take it back to my house. The next day she shows up at my door with her two kids - a boy, maybe 8 years old, shaggy brown hair; and a girl, maybe 6, with pony tails and a pretty little cotton dress). They're looking for their kitten. The little girl is crying, but I know its fake. The woman accuses me of stealing the kitten and says she knows I'm hiding it in my house. I am. I have it hidden in my secret attic (Yeah, I dunno. Just weird.) I tell the kids how sorry I am their kitten is missing, tell the mother she ought to take better care of her animals and shut the door on them.

Next thing I know, the cops are showing up at the door. Again, I lie to them and tell them I don't have the kitten. They come in and search the place with guns drawn, but don't find it. And they leave after threatening me to return it if I have it. Once I'm sure they're gone, I take the kitten out of the attic and hug it while I watch the police talk to the woman and her kids from my window. And then I wake up.

What the ever living fuck does this dream mean???!! So strange....

Thursday, February 23, 2012

An Update...

As far as the kiddo goes -- he seems to have chilled out. He's working on programming a 3D game which he hopes to sell if it all works out. He's no longer talking about offing himself & he's showering most days. And getting him to leave the house is like trying to move a large boulder with a spoon. I can live with that.

He has withdrawn from college. The social aspect is too hard for him right now. I don't know if he'll go back.

In the meantime, he's keeping himself busy. He taught himself 3D graphics in four days and advanced calculus in an afternoon.

I have no idea what he's talking about half the time. Matrices and quaternions and vectors and bzzzzzzzz....hunh, what? His "aspieness" is at its most challenging but he's feeling better, so I'll take what I can get.

As for me, I'm finally able to leave him for short periods of time (an hour or so) if necessary. I think I'll go grocery shopping tomorrow. I'm getting tired of scrounging for food and eating things like yodels for breakfast. Yeah. Gross.

Now that things are settling down, I'm hoping to be able to blog good stuff soon. So stay tuned...

Sunday, February 19, 2012

Gauche Girl Goes to Dinner

Last night was dinner with the in-laws...not just dinner, mind you - it was my father-in-law's birthday and not only was immediate family there, but all of his nieces and nephews. I don't consider myself an uneducated person, nor do I think I'm some complete loser, but my husband's family never fails to make me feel like a gauche farm girl from the sticks.

Worse, they do it very carefully, so that he never sees the claws.

The problem is I am sort of a gauche farm girl from the sticks. I grew up in rural Vermont, where going out to dinner meant dressing up in your jeans that didn't have holes in the knees to eat at the local diner or HoJos. We don't stand on ceremony where I'm from. That doesn't mean I'm a redneck, though. I have a bachelor's degree in communications, specializing in journalism. I've traveled. I follow fashion trends. I'm probably more up-to-date on market trends and politics than any of them. I have a curious mind - if something catches my attention, I learn everything I can about it.


Every time there's one of these family events, I start to stress. I go shopping for the perfect outfit - which usually results in me spending several hundred dollars for something that I'm pleased with. Last night was no exception. I bought a nice brown pencil skirt and black top at Express, a pair of cream tights at Kohls and a pair of brown leather ankle boots off Amazon (originally $200, on sale for $31!!!!). I don't want to give them anything to pick at (because they do). The stories I could tell. I looked nice.

In addition, I colored my normally pale blond hair a dark dark golden brown. It's beautiful. To be honest, I have a self-destructive streak that used to manifest itself in anorexia, as well as heavy partying and other bad behaviors. Now when I feel the need to do something radical, it results in a hair cut. This time, it resulted in my new hair color as well. I love it.


To give you an idea of what the in-laws are like...hmmm... they're all petite and perfectly put together. They like to shop at stores where a shirt costs $300 and spend $800 on a pair of shoes. They get their hair done every week professionally. They get facials and manicures and waxes. And they wear expensive perfumes that smell like shit - buckets of it. They're all older than me by at least 10 years and they're very...well...they're phonies. I've been with my husband for 25 years, and I don't think I've seen an honest emotion out of any of them in all that time.

So, we arrive and we do the air kiss thing. No one mentions my hair. No one complements my outfit. Even though I do that for all of them and they act like I'm expected to tell them how wonderful they are. Eventually my mother-in-law wanders over to where I'm sitting with my son. She's a 'touchy' woman - and by that I mean she likes to grab you and sink her claws (I mean nails) into you as hard as she can. Usually she grabs my arm. She always leaves bruises. Last night, she wrapped her hands around my neck right at my shoulders. Ow.

I can't stand it anymore. She's going on and on about my son's haircut. I say, geez, nobody even noticed my hair color change (it is dramatic). She looks down at me, sinks her claws in harder and says, "Of course I noticed. But I didn't want to say anything because I didn't think you could have done it on purpose." Yeah. There it is. (And of course, hubs doesn't hear - or maybe he ignores.)

I'm used to this kind of treatment so I laugh and say of course it's intentional. She insults my new color a few more times, all carefully worded, all the time squeezing my neck and then wanders away. I can still feel her claws.

At the end of the night, I'm standing with my sister-in-law and her best friend (who was there for some reason). They're admiring each other's shoes. I'm very proud of my new shoes so I ask if they like them. Sis-in-law looks down, kind of smiles and says that they're very "nice". Her friend says nothing. Then she asks where I got them. I should have lied. I know that. I should have said Bloomingdales or Neiman Marcus (they do sell them for $200-$300), but no, I say I got them off Amazon for a steal. My sister-in-law gasps and then proceeds to tell me how "brave" I am for doing that. She would NEVER under any circumstances buy ANYTHING from Amazon other than books. (Not that I think she even buys books.) Her friend agrees, a horrified look on her face. And then they laugh and walk away.

My husband doesn't understand why I HATE going out to dinner with his family. He doesn't get why I have to take an Ativan and drink to get through it. *sigh*

Welcome to my life.

Wednesday, February 15, 2012

I'm slightly self destructive, but...

sometimes that works out for me...

With my life in such turmoil and feeling trapped in it, I broke down and did something completely radical. First, I took scissors to my hair, which is normally a little past shoulder length. I cut it. A lot. Myself.

No, I'm not a hairdresser. (But I have been trimming my own hair for years.)

I gave myself a short, layered do that came out quite nice. And then I totally lost it....

Because my hair is blonde. Well, it WAS blonde. It's been blonde for most of my life. It was a pale blonde when I was a kid that became a more muddy blonde over the years. When I was in my late teens, I began lightening it to a pale golden blond. And that's how its stayed for YEARS.

I dyed it. Dark golden brown. DARK golden brown. It's a RADICAL change. Mixed with my hairstyle change, it's a SHOCKING change. And I LIKE IT!!!!!!

It looks pretty. Different, but pretty. (I'd planned on hating it. Hah. I fooled myself.) I might even go darker next time around. (Although, I would really like pink hair.... hmmmm...)

Monday, February 13, 2012

Talking Dogs and Sleep Deprivation...

This morning:

Me: *zzzzzz*
Dog: <poke>
Me: Hunh?
Dog: <poke>
Me: <realizes alarm is wailing & shuts it off>
Dog: <poke>
Me: What do you want?
Dog: Out! (well, it sounds more like owwww, but its 'out' - trust me)
Me: You need to go out?
Dog: <stretches> Out!
Me: Okay, give me a minute. <roll over and drift>
Dog: <poke> Ouuuuut! <leaps on bed> <poke>
Me: Okay, okay! I know, you need to go out.
Dog: <stomps on me an slobbers my face> Ouuuuut!
Me: Get off me and I'll take you out!
Dog: Ouuuut! Ouuuut! <poke> <slurpy lick>
Me: <drags self out of bed, takes dog out, crawls back in bed> *zzzzz*
Dog: <poke>
Me: What now?
Dog: <sad face>
Me: I'm not getting up. I took you out already. Leave me alone.
Dog: Out!

(God help me, that is how my day started out.)

Monday, February 6, 2012

Life ... or something like it

I started this blog figuring I would be funny and smart while I shared what life was like raising a teenager with Aspergers. Its turned into something entirely different. It seems almost wrong to find humor in something that is - at the moment - anything but.

Today, I thought I would talk about what life is like right now. The first thing you need to know is that Aspergers is not something you grow out of, and its not something that can be cured. I don't care what you read or what authority claims that is the case. At best, a person with Aspergers learns coping strategies that help them to navigate this less-than-perfect world.

With my son's realization that he wanted friends - that he wanted to be a part of this world - came anxiety and depression. Anxiety because he wants so much to fit in, but learning and using social skills is like learning how to read when you're dyslexic. Unfortunately, the neurotypical world isn't accepting of someone who can't read body language or facial expressions. And people are even harder on someone who operates on a less than mature social level. They assume "brat". They label "freak". They shun and hate. So, the effort it takes to try to "fake normal" takes a toll - and anxiety is the price paid. Clinical anxiety. Anxiety that causes massive panic attacks, meltdowns, and freak outs.

The anxiety and its results lead to worse isolation and ostracizing, which lead to depression. Clinical depression. The kind that says "Why get up at all? What's the point? Wouldn't I be better off dead?" For someone with Aspergers - which has an OCD-like component where the brain fixates on something - fixating on death is a Very Bad Thing.

That's where we are right now. Kiddo was shunned and ostracized once again. He reached a point where "faking normal" was just beyond him and he fell apart. In class. In front of college students. He was humiliated. Again. His disappointment and disgust in himself is as deep and dark as the ocean. He's dropped out of college. He won't get up or shower or leave the house without a fight. I can't go out without him because death does seem like a reasonable option to him. And so I sit here, surfing the web, attempting to read, trying to keep myself sane in an insane world where nothing makes sense.

I think (and God forgive me all of you who have kids who are unaware of the world) that it would be better if he was clueless. He was happy before he realized he wanted friends. He was happy before he realized he didn't "fit" in the neurotypical world. He was happy before the "neurotypical world" destroyed everything he is with their disdain and loathing of difference. At least, if he were less functional, he wouldn't understand that loneliness is the worst feeling ever.

This is not life as it should be.

Monday, January 30, 2012

A Tick Bit My Ass - I Think Its A Metaphor For My Life

Yes, you read that right. Yesterday, hubs, kiddo and I bundled up and went out to a local nature preserve to take pictures. Got some great photos of moss, leaves and other naturish things. I also got a tick on my ass.

Yes, a little deer tick apparently found its way inside my pants and attached itself to the underside of my right butt cheek. I guess I should be grateful it  didn't decide to burrow a little more to the left, but damn. I didn't know tick bite hurt so much!

I found it late last night (or actually early this morning) as I got ready for bed and proceeded to wake up the entire household shrieking about the tick on my ass. At least I didn't run around bare assed. Anyway, hubs got the tweezer and I bent over and grabbed my ankles while he tweezed it free. Then we splashed a little alcohol on it, I took an allergy tab and went to bed.

Only, I couldn't sleep.

See, the freaking thing hurts. Its raised and red about the size of a quarter and I'm having shooting pains up and down my leg. My ass is pulsing. I think the tick hit a nerve. Is that even possible?

If this wasn't a metaphor for how my life is going at the moment, it would be a whole lot funnier.

So, that leads me to why a tick on the ass is like my life.... today, kiddo decided college is not for him. He's not going anymore. Short of dragging him kicking and screaming to each and every class, there's no way he's going back. Yes, he has a 3.75 GPA and 2 semesters under his belt. Yes, he's damned smart. But the social stuff is killing him. So, we've endured a huge emotional upheaval over the last few days which culminated in today's decision. Now I have to call the college, tell them he's had some sort of anxiety driven breakdown and see if I can get this semester's tuition back. Fun fun.

I'm not saying my son is a pain in the ass by the way. I'm saying that trying to work around Aspergers and all the struggles and problems it presents is a pain in the ass. Life is a pain in the ass - well, my life anyway.

Wednesday, January 25, 2012

Do the Right Thing and Live with the Consequences

Recently, a friend of my son approached us and asked for my help. The kid had only applied to one college and because our lovely local high school hadn't done the right thing, they were rejected. They desperately wanted to go to the same college as kiddo for a number of reasons. Unfortunately, the family doesn't have a lot of money and the parents didn't understand any of the paperwork - never mind they didn't want to do it. So with their permission, I agreed to help. It was the right thing to do. This kid deserves a chance.

This kid (forgive me for not using a gender, I just feel like it's important not to give out too much info) also asked for my help figuring out financial aid. I was more than happy to do it. I helped them plug in all the information to find out what money was available to them & helped them get all of their paperwork (other than HS transcript which must come from the HS) together to apply to the college. I went with them to drop it off and make sure the college didn't need anything else to make their decision.

Beyond that it was out of my control. I couldn't follow up because I'm not their parent. So I encouraged the kid to call the college. I don't know if they did that. I do know they didn't get into the college for this semester. And now, the kid is avoiding my son. And he doesn't know what to do.

Kiddo is good good friends with this kid - best friends. In fact, this kid is his ONLY friend. And now things between them are strained. The kid doesn't want to talk to him. I know its because they're probably discouraged. I hope that they don't blame him for not getting in, but I worry that they might. He's crushed. We knew this was a possibility if I helped, but how could I not help? If I'd said no, we'd still be in this boat. It was a no win.

I don't regret doing the right thing. But living with the consequences sucks.

Tuesday, January 24, 2012

This Roller Coaster Called Aspergers...

I'm just going to go ahead and say it - Aspergers is both incredibly amazing and downright sucktastic.

We go from thrilling moments where everything seems perfect and kiddo is doing fantastic to low lows where the world feels like it's ending. Why? Change. Change is bad. Change is evil. Change bites!

After a semester being a computer programming major, kiddo realized he's never going to be able to work for someone else in an office setting. He also realized that he has no desire to run a company (thanks to the douches in his computer club - but that's another story). So he decided computer programming was not where he saw his life going. The problem is, computer programming has been his life for 6 years.

But he also loves art. So he made the decision to change his major to Arts with a concentration in Crafts. This is probably a much better career path for him, even tho he won't make the kind of salary that will keep him drowning in computers. However (as stated above) Change is BAD. He's overwhelmed. He feels unprepared.

And worse, he struggles with making friends.

Those few kids he started to make a connection with are either in the computer club (he won't have anything to do with them now) or in his computer classes (which he dropped). So he's thrown into a situation with all new kids who he has to try to connect with.

Today, in art class, he was given a project that requires fine motor skills that he doesn't have. Aspergers prevents him from ever truly mastering many things. He struggled horribly with the project because as much as he tried, he was unable to do it. And his frustration, anxiety and loneliness got the better of him. He cried in class. He's devastated because he works so hard to "fake normal" and he blew it - the second day of class. In his mind, he's a freak already - now he's a freak who cries.

He wants to drop out. He says it's not worth it. He's never going to make friends. People pick on him. They make fun of him. They laugh at him and call him names. (He even had a teacher tell him he was a worthless useless waste of space - which is why he dropped out of high school, got his GED and went to college when he ought to be in tenth grade). And the kids that don't tease and torture him? They pretend he doesn't exist. They literally ignore him when he tries to talk to them. That's just as bad.

If he drops out and gives up, I don't know what will happen to him. Sitting at home with me isn't going to give him the socialization he so desperately craves. And where is he going to find a job in this economy? I feel like someone's jammed a knife in my heart and is grinding it back and forth. Life shouldn't be this hard. He's such an amazing person - smart, funny, kind and interesting. He deserves happiness, not this constant stress-filled and lonely existence. Life isn't fair. It doesn't even come close.

And as for people who treat people with disabilities like they're freaks or less than human - shame on you. Different isn't less. A human being is a human being and they're worth knowing for the very fact that they do have such a different view of the world. A world, by the way, that either ignores them, shuns them or tortures them.

I hate today.

Thursday, January 19, 2012

Its All In The Perspective...

*taking a deep breath*

I'm fallible. I'm human. I'm a person.

My aspie son - at the age of 17 - has suddenly realized that I'm not God. I'm not his conscience. I'm not perfect. My opinions aren't always right (but they're mine). I can be hurt by words. I don't know all the answers.

He's been getting angry, annoyed and at points hostile toward me lately. He questions my judgement. He questions my ideas. He questions my opinions. That's all wonderful. I WANT him to do that. I want him to ask why. I want him to challenge me. Its part of growing up and it should have started happening when he was 10 or so. The problem is - he truly can't understand why my opinion isn't coinciding with his, and he wants me to have his point of view.

Last night, he completely flipped because I refused to agree with him about piracy being okay in certain circumstances (like if you don't have the money to buy an actual copy of something - it's okay to get it online if a site has it available - never mind that the site is illegally posting it). I explained that it was theft. He felt it was a gray area because he's not breaking the law if its there for the taking. Yeah. Wrong. This led to a major fight where he completely lost it because I refused to agree with his opinion. *sigh*

On the one hand, I'm overjoyed that he's developing the ability to determine things for himself. I've spent years telling him that he should form his own opinion of things. I've tried to explain to him that he should do what he wants to do, not what I want him to do. I've told him not to put so much weight on what I say. I'm not God. I've actually used that phrase - maybe a billion times. (Well, okay, not that much but you get it, right?) I want this for him because he needs this skill set to be an adult.

But...I've suddenly become the bad guy. He yells at me. He calls me names. He accuses me of being difficult. He tells me he hates me. And that's killing me. Because I'm not disagreeing with him just to disagree. I have my own feelings and opinions. I can't change them to make him happy, just like I don't expect him to change his feelings and opinions to make me happy.

Today, we had another fight before the day even started. I'm feeling ... depressed ... discouraged .... and hurt. He made me cry. I tried not to, but I did. His perspective of me has shifted and he told me he didn't like the person I am. He said he couldn't wait to get away from me. It broke my heart a little. I love who he is - I love that he's discovering more and more about himself. He's a phenomenal person. And to hear him say that he thinks I'm not someone he would want to know - that he doesn't feel the same about me ...

Aspergers is a challenge. Life is a challenge. Depression is my challenge. Today, the weight of all of it is too much.

Wednesday, January 18, 2012

Online Piracy, SOPA, Censorship and Me

Anyone who spends time on the internet knows that today websites everywhere are making a stand against SOPA, the current bill to stop online privacy. I think we can all agree that piracy of any kind isn't a good thing. Ask musicians. Ask authors. Ask artists. They pour their souls into creating something uniquely their own - be it a song, a book, an idea, or a piece of art. Just because they're giving it to the rest of us to enjoy does NOT mean they don't deserve the credit or the profit from their work of art. Theft of an idea or creation is still theft.

So, you would think that I would be in favor of SOPA, the Stop Online Piracy Act. You would be horribly wrong. SOPA, as it reads right now, is nothing more than a cleverly disguised attempt by government to have the authoritarian right to rob us all of our rights on the internet. I don't know if they planned it that way - I suspect that someone in Washington understands the implications of it as it reads now. But I would like to believe that the majority of our congress has no idea of the consequences if SOPA actually passes.

Can anyone say government censorship? How about police state?

And who will actually be monitoring sites? Who gets to determine what is acceptable content and what is not?

Look at your own blog. Do you have links to other sites? Do you quote anything? Do you have any images you've uploaded? Do you have background music? Sprites? Artwork? Do you discuss things that require you to reference ideas, books, works of art, music? Well, if the people behind SOPA have their way, they could shut your site down for any one of those things. At will - without explanation or ramifications!

SOPA is a good premise made into a bad document. Yes, we need some way to stop online piracy. Punishments should exist for people who steal other people's ideas to profit from them. No one has the right to strip an artist of their work. But if we, as a free nation, allow this document to pass, we're saying its okay for the government to spy on us, to shut us down if they don't like our opinions, to suppress our right to free speech. We're opening the door for Big Brother to not only get in but to take over. And that cannot be allowed to happen.

Speak up against SOPA. Tell your congress person that the way it reads is not only unacceptable, its reprehensible. Demand a real Act to stop piracy - one written by the very people it's meant to protect. They should be working with authors, musicians, artists, publishing houses, studios, etc. to create a bill that makes sense - not this scam of an Act that we'll all live to regret if it goes through.

SOPA needs to go along with online piracy.

(cross-posted from my other blog - is that an act of piracy? hmmmm...)

Sunday, January 15, 2012

A Post Just to Post

I promised myself this blog would get a post a day. I've already blown that promise. But that doesn't mean I'm going to skip it today just because I'm tired and can't think of anything interesting to talk about. Nobody but me is reading it anyway, so who gives a shit?

Today I bought a new couch. We've been living with this old couch long past its life expectancy. Why? Because money is an issue. By that I mean that given the choice between buying something that would make me happy and something that would make kiddo happy, I choose kiddo every time. So, we've been sitting on a couch that's disintegrating before my very eyes. There's rips in the fabric, the springs are gone (I'm stuck sitting on a spring that protrudes up into my left ass cheek in a most unpleasant way) and it smells like wet dog funk.

Shopping for anything is an adventure for us. How long can kiddo endure it? How difficult is it going to be to even get him to go with us? Can we leave him home? Will he be okay? You would think with a teenager this wouldn't be an issue, but it is. It's becoming less of an issue as he gets older, but its still an issue.

The couch needs to go.

Today, I decided it was time to spend money on something that we both could appreciate. So, I got him and hubs in the car (together, no less) and we went to the furniture store where we spent 2 hours sitting on couch after couch until we all could agree on one. It's a very nice Broyhill couch in a chocolate brown fabric with gold and red undertones, and it comes with 2 pillows in a swirly-fleur-de-lis pattern in emerald, red and gold. Yes, I have to wait 5-8 weeks for it, but I can wait. After all, this one was supposed to be replaced after the Great House Flood of 2002 (don't ask) because it was sitting in water 4 inches deep.

I guess, if you consider it, I've made kiddo happy as well with my purchase since we've both taken to sitting on the floor. It's way more comfortable than the present couch...

Saturday, January 14, 2012

The Winds of Change...

The Winds of Change are blowing in my house and I have to say I'm kind of liking it.

Kiddo had an epiphany. Long story short to bring you to where our lives are now, a year ago on his 16th birthday, kiddo dropped out of high school. He'd stopped attending 2 mos. into 10th grade because he was being bullied. When a teacher decided to call him a "useless waste of space", he was done & we spent another 2 mos. fighting the system. By January, we were all tired of the fight. The school didn't care.

This is BTW the Reader's Digest version of the story - which is horrific beyond words. Talking about it tends to spiral me into depression, so I'm just not going to go there right now.

Aaanyway.... Kiddo immediately enrolled in the local community college & got his GED. Then, he applied as a late enrolling freshman in Sept. at a state university. He was accepted into the computer science program. His first semester he came away with a 3.7 GPA. Woo! But he didn't seem happy.

Over the last few weeks, he's been very quiet. And then it happened. He announced that he doesn't want to do computer programming for a living. He wants to study Art. Yes, my aspie kid, wants to be an artist. And you know what? I think he'll be a good one. He's very creative (and that's not me the mom saying so - its me, the artist.)

I'm going to share a bit of wisdom here, because I come from a family of artists. Don't let anyone tell you that your aspie kid isn't creative. Put a pencil or a marker or a camera or some clay in their hands and let them loose. If they don't like glue, give them double sided tape. If they don't like playdoh, give them Sculpey modeling clay. If they don't like getting their hands dirty, give them thin rubber gloves (they sell packs of non-latex ones in craft stores), put them in an apron or let them do it naked. Who cares what anyone else thinks! Don't make them color in coloring books if they hate them - give them blank paper and let them do whatever they want. Staying within the lines is for unimaginative people anyway. Set them up with computer drawing programs. Buy them Legos. Teach them how to make paper snowflakes. Let them design the yearly pumpkin face on paper. Any and every way you can help them to be creative - do it. You might be amazed by what you discover.

My son has an eye for photography. He's also talented with clay. He wants to learn to weld and work with ceramics. He wants to learn how to draw with shading and perspective. He wants to create. And it makes him happy. From wanting to have his own computer company to wanting to sell art at shows....the winds of change are amazing.

Saturday, January 7, 2012

Mama Didn't Raise No Hoarders

January 7, 2012 10:25pm

Um...either that statement is completely false or its a double negative, in which case it's true.

See, my mother never throws out anything. I don't know why. And I always promised myself I wouldn't be like that. For a long time I wasn't - I moved every 6 months or so and chucked everything I didn't need. But 22 years ago my then boyfriend/now husband and I bought a house. It's not a big house. (Can I interject that I hate raised ranches. They're small, they have no attic and no closet space.)

At first things were okay. I chucked stuff regularly. And then my son came along. And life got in the way. And things got shoved up into the crawl space that is sort of like an attic if you're willing to crawl on your hands and knees down the center and watch your head.

Then I took over the spare bedroom, which is really no more than a glorified closet since it only measures 9 ft by 10 ft., and turned it into a craft room/attic. It's now more attic than craft room since it's unusable and I do my craft projects at the breakfast bar.

Then we turned half of the cellar into a family room with a second bathroom, and another quarter of it into a home office for my husband. The remaining quarter is the laundry machines, the furnace and some haphazard shelving. All the stuff stored there either made its way into the non-attic (yeah, I think it might be a fire hazard) or the craft room.

And the breakfast bar has become a craft table/catch all. And my craft room has moved into the dining room.

Then there's my son's electronics and manga and anime and stuff....

I've run out of room. There are stacks of things in my house. Seriously. It's freaking me out. I'm throwing shit out but I'm making no headway. I'm drowning in the detritus of my life. It's gotta go!

I think I'm my mother.

Friday, January 6, 2012

Dorm Dilemma

January 6, 2012 10:38pm


I decided to create this blog to talk about Asperger's Syndrome. I have a 17 year old son who was diagnosed 10 years ago. If you're a parent desperate for information or a friendly ear, feel free to email me. If you're a person with Asperger's, I might have questions for you. Yes, my email address is a little odd, but I promise I'm perfectly normal - just a fan of urban fantasy. I also run an Urban Fantasy blog and I created the email to go along with it.

I'm not setting out to make this an educational site, though it may end up educating those of you who decide to follow it. Mostly, I'm going to talk about whatever strikes me as important on a day-by-day basis. I may share funny stories or I may vent about difficult moments. I might talk about things I've done that have made a difference in helping my son. I don't know. I just know I need an outlet these days and this is going to be my self-imposed daily therapy.

Today, my son was obsessing about independence. I hate using that word - 'obsessing'. But it's really the only word that fits. You see, he's in college but living at home. (That's a long story I'll save for another day for those of you who don't already know it.) But tonight he got it into his head that he needs to be more independent and live on campus in September. Now, for most people that would be the end of the conversation, but I just spent 3 hours trying to tell him I agreed with him, but didn't feel like discussing something that isn't going to happen for 9 months and can't even be approached for another 5 months. Nothing I said stopped him.

He understood that there was nothing could be done now, but that didn't stop him from discussing it non-stop for hours. Three hours. Three very long hours.

I agree he needs to learn to live on his own. I think that's important. But...He has never stayed a day away from home. He has not learned to drive. He can't get himself up in the morning. He relies on me to organize him - from getting him up to choosing his clothes to making his meals to putting out his meds to reminding him to shower & brush his teeth. He relies on me to be his 'shuttle bus' everywhere. Do I think he can learn to do these things for himself? Yes, if he's motivated. I'm not sure he really is.

Do I think he can manage living with a stranger? No. And there in lies the problem. He has no clue what its like to share a bathroom or cleaning duties. He has no experience dealing with a roommate. He doesn't have any clue how to compromise (I was begging him to just let me watch tv tonight practically in tears - because I'm exhausted mentally & physically - to no avail.) What will he do if his roommate tells him to shut up? What will he do if his roommate eats his food? Uses his shampoo? What will he do if he has to fake sleeping while his roommate gets it on with a girl six feet away? (Hey, been there, done that - it happens.) He has so much to learn.

But I'll strap on my big girl boots and try to teach him everything he'll need to know. And I'll fail miserably. Guaranteed. *sigh*