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."

Yeah.

It was my introduction into what our lives would become.

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.

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.

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.