Thursday, May 12, 2011

It Definitely Sucks!

For most kids at 15 your world is all about your friends.  Your family sucks.  Your parents don't know anything.  They don't get it.  They don't get you.  High school provides a connection source.  It's the place that you find most of your friends.  You take some classes you hate, some that you love, but your place in the hierarchy of this place can define a great part of your life.  Your experience here, shapes who you become to a degree.

High school can also be a place of shear torture for many kids. Being bullied, feeling left out, ostracized, desperately wanting to fit in, but feeling like you don't.  When you have Aspergers, an extreme deficit in social skills,  and sensory issues, you can multiply that torture X's 10 (at least).

It's near the end of the school year and Red is done, he's ready to check out.  Unfortunately you can't just say, "Sorry people...I'll see you next year, maybe."  You have to get through it.  Suddenly his classes are too loud.  There's too many people.  He hates this teacher and that teacher.

The bottom line is he's tired of feeling like a little gold fish in a huge ocean filled with sharks.
He's tired of swimming against the tide.
He's tired of not having any real friends.
He's tired of being surrounded by people but not being able to connect with any of them.
He's tired of the loudness of the classrooms.
He's sick of the sensory overload.

So he comes home and goes ballistic.
He screams to the top of his lungs at a simple request of taking a shower.
He rages and rants about how horrible his life is.
He becomes more aggressive more angry with those of us who love him.
He is miserable and he wants the rest of us to join the misery party.
He pounds us with scripts and demands to buy him new things that he thinks will make him happy.
He has yet to realize that things don't make you happy.

Everything that is wrong in his life is somehow my fault.
I am the person who works tirelessly to find answers.
I am the one he thinks can make things better for him.
I am the person that he knows loves him unconditionally.
I always forgive him.
This gives him license to treat me like crap.

I keep it moving forward...trying to help him and my younger son, who also has Aspergers.
Therapies, doctors, social skills, medicine, advocating, ARD meetings, IEP's, BIP's, carpools, entertaining
I keep a smile on my face, trying to focus on my blessings.
I pray and see small victories, but can't help but wonder why I'm not seeing any miracles.

To every thing there is a season, and a time to every purpose under heaven -Ecclesiates 3:1

In my head I know this is true, but when your child suffers, it's hard to figure out the purpose of that.  Help me Lord.

Please stop by and visit me @ Confessions of An Aspergers Mom
I also invite you to "Like" my Facebook Community Page

Tuesday, May 10, 2011


"To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment."
- Ralph Waldo Emerson

My boy denies Asperger his due. The paperwork claims a mood disorder and that makes it official.

My boy denies Asperger and the existence of God. He can't have faith without any evidence.

My boy denies Asperger and, from this day forward, he identifies with hippies. He has long since outgrown his James Bond tuxedo.

My boy denies Asperger and he doesn't see the point of Harry Potter. A modern day wizard is nonsensical.

My boy denies Asperger and he would prefer not to go on vacation. He doesn't like to be away from home that long.

My boy denies Asperger and he once wrote his own constitution. He used Russia 1906 as a model.

My boy denies Asperger and he gets anxious waiting at doctor's appointments. It's 2:34 now and shouldn't we be back there because our appointment was at 2:30?

My boy denies Asperger and he blogs for the local socialist party. He's 15.

My boy denies Asperger and he is an expert on Japanese fighting fish. He cannot row a boat.

My boy denies Asperger and he charms every teacher. He finds his fellow students to be a tougher crowd.

My boy denies Asperger and loves ethnic food. He doesn't realize his stepfather has taken him to his favorite Ethiopian restaurant for 6 birthdays in a row.

My boy denies Asperger and greatly admires Steve Jobs. He still thinks software should all be shareware.

My boy denies Asperger and believes being grounded is oppression. The dictionary defines it so.

My boy denies Asperger and cannot accept what he cannot change. He's never seen Asperger's syndrome in black and white.

~ I'm HeeWho and I blog at notthatgoodofaperson

Friday, May 6, 2011

It Clicked

It clicked today. Not that it hasn't before. There have been huge steps, then a step back, then forward, then two steps back. That's autism for you.

But today, the pieces fell into place. She's been struggling to learn to read for a while now. Lately, she's been working even harder on her speech homework and reading simple books. Fat cat. Hot dog. She's read Dick and Jane, and recently discovered that Poppy, our Newfoundland, is the perfect reading buddy. She's become more interested in books, and loves to be read to (though she has loved that for a while).

Today, we sat, waiting for my band class to start. I brought along the book I'd been reading aloud. In it, a group of teenage girls learned to read for the first time. The main character, a smaller girl who felt young and unimportant compared to her peers (hm, sound familiar?) was teaching her older sister to read. On a whim, I pointed to a word.

"I bet you know this word." She recognized it as one of her sight words. "She." She knew the next word as well. "Would." Carefully, she sounded out the rest of the words in the sentence. I helped her sound out the harder words, ecstatic. Later that afternoon, she read an entire page out of the book, with help.

We ended up going to the bookstore that evening. I don't think I'll ever forget the look on her face as she looked at the chapter books and realized that she could read the words inside. Suddenly, it wasn't something that her peers could do that she couldn't. It wasn't something to be afraid of, or pretend she didn't want to do. She could read. She skipped back to the car with her book, and once home, ran around the house singing "I can read!" She wanted to read everything: labels on packages, words from the book, even a birthday card that was on my nightstand. She read me an entire book, Leo the Late Bloomer, about a tiger who couldn't read or write when everyone else could. It was all I could do not to cry. She said later that there were words everywhere and now she could read them. She jumped up and down, still singing, and went to read to Poppy.

When she came back in, she chattered rapidly about anything and everything: the characters in the book, how she felt left out with her friends, how she had friends who moved and others who weren't friends anymore, how she wanted to be like me (yeah, I know. No pressure) and how she was so excited she could read. I wished I could hug her and tell her it would be okay, that it wouldn't be hard. All I could do was hug her and tell her I knew exactly how she felt, how even now I didn't feel like my peers (Prom? Meh. Dating? Triple meh.) It surprised me, definitely. She's very quiet and doesn't usually talk about her feelings, let alone deep, dark fears and insecurities. I wish I had the words to make it better. All I can do is be there for her, ready with hugs and a listening ear (since it would probably be frowned upon to try to knock some sense into nine and ten year old girls). Even with everything she told me, I feel like she has a newfound confidence. As we told her, a whole world has been opened up to her. Later, finishing the book, we ran across yet another thing she could relate to.

"I keep thinking about a tale my nurse used to read me about a bird whose wings are pinned to the ground. Have you heard it? In the end, when he finally frees himself, he flies so high he becomes a star. My nurse said the story was about how we all have something that keeps us down."

Today it clicked. And I know it's just the beginning and it doesn't mean everything is perfect, but I'm finally seeing my baby sister fly and I think it's the best feeling in the world.

JBug is the oldest daughter of Tina, and big sister to two (mostly wonderful) siblings.

Photo via Flickr, quote via Princess Academy by Shannon Hale