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Thursday, September 6, 2012

There Is No Gray In Autism

I'd like to talk a little about what I'm going through as a parent right now. So all you men out there, grab a beer and go watch football.......Are you watching?......Okay. Ladies, please get cozy for a minute and allow me to vent. I promise that when I'm done, you can tell me your stories as well. :)

I happen to be the mother of an autistic child. In case you don't know anything about autism, its measured on a scale from high functioning to low functioning. High functioning is when the child is able to do most things and be as close to normal as a person with autism can be. The lower on the scale a person is, the less they are able to do (such as speech, movement, communication and so on).

My son Jake, is 11 and a half years old and has high functioning autism. I have been a single mother since his birth. I have no family and as busy as I am and as often as I've traveled in my life I have few friends. So I've basically been raising my son completely alone all along. I've only had one brief relationship with a man in my son's entire existence until recently so when I say alone, I mean that quite literally.

Its not easy raising a child with high functioning autism. Since he can do most things and act pretty much like all the other kids his age the untrained eye wouldn't recognize the symptoms. Instead, they'd assume he was just a 'goofy' or 'stupid' kid.

As his mother I'm typically very defensive, but at the same time I understand that other people simply don't know or understand. I do my best to ignore the looks and smirks that come when my son makes strange comments in public places. Or when he speaks quite frankly about things most people would never utter a word about (like constipation and all its wonderful symptoms and side affects, or like when he points at an unattractive person and says rather loudly, "What's wrong with his face?"). And I try not to take it too seriously when people stare or point when my son twitches his neck back and forth looking much like a chicken. (uncontrollable ticks and twitches are often a symptom of autism)

All the little things I do my best to brush off. Sometimes the unexpected happens and someone will whisper, "He has autism, doesn't he?" and I smile and sigh with relief. Its not often that people understand what its like for me to be his mom, or worse, what its like to be him growing up in a cruel, not so understanding world.

To be a child with autism means you wont understand language all that well. Most people speak with slang or sarcasm and more times than not we have to read between the lines with euphemisms and metaphors. If you think about it, we don't often say what we mean. We sugar coat things for the sake of sounding intelligent or to make others smile. But an autistic child learns and thinks with a preciseness that is now fading in the world. Basically what that means is that they hear the words and take them at face value. They expect that you mean EXACTLY what you say. There is only black and white, no gray. They read whats written on the lines, not between them.

So when my son asks me if ghosts are real and I say, "Yes, Jacob. They're real." and I roll my eyes and laugh. He wonders why its funny that his worst nightmare just came true.

As a matter of fact, one of my son's biggest fears is getting shots at the Doctor's office. Not too long ago I brought him with me to a Doctor's office (as I often bring him to work with me since I have no baby sitter) where my boss was going to get a blood test. He began talking to me about what was going to happen to my boss with great concern.

I tried to make light of it as I often do and made jokes to get him in a better mood. But as the conversation progressed he began to over react a little bit. As we discussed what taking blood is for and how its done, I sarcastically said, "You'd better toughen up buddy, cuz you'll be going for a shot again soon." Well he instantly teared up and began to panic. Suddenly feeling like a real douche bag as everyone in the room was suddenly staring at me, I quickly told him I was just kidding. He sucked the tears right back into his face and dropped the issue.

Well, a couple days later it was still on his mind. I realized this as he made a snide remark about something he heard on TV and said, "I'd rather get a thousand shots than have to do that!" Rolling my eyes, I had to add my two cents. "Oh yeah?" I said. "Good, cuz you're ganna get one tomorrow." I again giggled and shook my head thinking he knew that I was just kidding. I was wrong.

Then next day I had to take my boss to the Doctor again. While Jake and I sat in the waiting room I just kind of glanced over at him and he was rubbing his arm. I noticed a deep red spot on his arm and I quickly grabbed his arm and lifted his tee sleeve to see that his arm was all marked up with red spots. "What's this?" I asked studying the marks. "Bug bites?"

He laughed for a second. "No. I've been practicing."

I sat back and looked at him trying to understand what he meant. "Practicing what?"

"Getting a shot." he said.

He must have noticed the shocked expression on my face because he felt the need to elaborate. "You said I was getting a shot but you didn't say when. So I'm practicing so it wont hurt so much." Then he proceeded to pinch his arm and show me.

I slapped his hand away and of course and whispered quite gruffly, "Stop that! Don't you do that again!" I then burst out laughing. I know that was inappropriate but it was funny as hell. Sad, but wicked funny. It was a true 'kid blooper' moment.

Now, even as this is kind of funny, something as simple as this would not be so easily understood by the average person. This kind of thing could get my son taken away from me.

I recently had a conversation with my boyfriend that sort of led to another conversation that hit a sore spot with me. (Don't worry dear, you didn't do anything wrong.) My boyfriend doesn't think that kind of stuff is enough to amount to anything. He doesn't think I could get in trouble for that. Well.....

When my son was 5 he started his first year in school. I'd been taking him to Doctors and Specialists about his symptoms for 3 years at this point. Right when he started school, he got diagnosed with High Functioning Autism, Tourette's Syndrome and ADHD. What a fire cracker he was.

Anyway, during the diagnosing his Doctor prescribed him a medication that unbeknownst to me had a nasty side affect of insomnia. Jake had been awake for days, and since HE was awake, I was awake. We were both fading. No sleep has horrible side affects on people, including sickness and death.

Jake had been up for days and so had I. I couldn't take anymore. I was working 3 jobs, taking care of him and dealing with the Doctors. I had nothing left. So I went storming into his room and started yelling. I forced him back into his bed and told him to go to sleep or else!

Jake had a terrible habit of scratching his face and neck during a temper tantrum. As soon as I raised my voice, he went nuts. He never could handle it when I yelled. He began to scratch, kick and scream. I quickly held him down until he was too tired to fight anymore then I went back to bed.

He must have stayed up after that and continued his fit because he looked like he'd had a meeting with Freddy Kruger in the morning. I took pictures to document his behavior for the Doctor and I sent him off to school.

Long story short, days later there was a social worker sitting in my kitchen asking me if I was an abusive mother. I told her everything and even gave her permission to read his medical report. He had a tendency to self mutilate during tantrums.

To make the story even shorter. She did, and she closed the case the same day. On a good note, the same day, I took him back to the Doctor who only then realized insomnia was a side affect and prescribed meds to counteract that.

So this kind of thing can be very scary. Especially when most people don't understand these kids. They say things they shouldn't say. They do things they shouldn't do. They have no idea what secrets are or what privacy is. They have no sense of sarcasm. They have no sense of safety. They are oblivious to things going on around them and are constantly misunderstood.

I've recently been feeling the heat with my son as he's getting older and certain habits and behaviors are no longer acceptable. Unfortunately, even as I'm expected to instantly correct all these 'flaws' I simply can't. I'm just an ordinary mom and I can't change my son. He is who he is.

So if he cant handle changing schools and bombs his first year, then he'll just have to repeat it next year. If he opens his mouth and yells out, "Look, I'm Jesus!" while seemingly making a balloon float in front of a very religious group of people, they'll just have to be more understanding. If he makes a snide remark to the wrong person and gets a black eye because of it, he'll learn quick to keep his mouth shut (and Punchee McPuncherson will be feeling the long arm of the law). And if he skips his meds and rides his bike out in the street without looking, I will be there to save him.......and then collapse from heart failure.

I cant stand the, "Kara, you gotta stop him from doing this, or saying that." Or, "You gotta stop him from walking on his toes or he's ganna get beat up in school." Or, "You gotta get him to stop being so sarcastic all the time." I cant help it! I cant change him! Its not my fault that he took all my minor bad habits and turned them into his everyday personality with a negative twist! He's drawn to strong emotions and uses them in his every day life because those are what stand out the most! Autistic kids are not 'Normal'. They will never be what you want them to be. Not because they're snotty or rude, but because they CANT. They don't know how. Simple as that. Their brains are incapable of learning and using knowledge the way we do. It doesn't mean they're hopeless or useless. Just different. In this day and age it shouldn't be so hard to understand that.

......*takes a moment to breathe and suck in some oncoming tears*......

I honestly don't know why I wanted to share any of this. I really didn't have a point. I just wanted to explain how difficult life is with an autistic child. The poor kid never understands why he's in trouble. And I never knows if I was right to punish him. Im constantly pulling my hair out with frustration and he's constantly trying to please me, but messes things up instead. Its a vicsious cycle.

These things have brought me to tears more than once. And I spend every single day wondering if anyone will ever understand.

Having a new boyfriend (well, not really new but not quite a year along) I cant help but wonder every day if he's able to cope with my son and all his embarrassing habits and behaviors. Most people can't or wont. So I never feel like I have two feet on the ground. I'm always running. Is it time to move on? Are we going to be accepted? Do they really understand the situation or are they rolling their eyes when I turn my back? Are my friends really my friends? When he/she nods and agrees, do they really get it? Will my boyfriend eventually throw his hands in the air and walk away because my son seems like a lost cause? Its all very possible and its always on my mind.

So I guess I just wanted to vent a little bit.

Oh....um....P.S.

I think I forgot to mention this before but we eventually ruled out Tourette's Syndrome. Apparently his 'ticks' are from the autism, thank god. Tourette's Syndrome can be fatal. Yep, try swallowing that one for a few years until you do the research yourself and learn to be your child's best Doctor.

Anyway, feel free to comment or share your own stories if you'd like. I always read with an open mind. :)

2 comments:

  1. You never cease to amaze me. I wish I were half as strong as you are.
    One thing you wrote stuck out for me...that Jake tries to please you. He wouldn't do that if he didn't love you. That tells me you're doing a fantastic job. Keep on loving each other, and the rest will work out.
    You have an awesome son. Take pride in him always.

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  2. Thanks CJ. He is a great kid and I'm blessed to have him. He's got a heart of gold.

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