Wednesday, December 10, 2014

She called it the Monster

Today we had an early morning IEP for Abby. All IEPs have to be done before school hours as to not interfere   ...I think

We haven't had one since last winter. It was the first one where I ended it without an argument.

One the way there this morning I didn't have my usual, " Don't be an asshole." Talk with myself. I don't have to take deep breaths. I didn't  grip the steering wheel, hands aching by the time I got there. Why? Probably a few reasons. I AM exhausted. I have accepted my child. After probably 10 IEP's. I am more educated and they are more used to me.

This time though...l almost don't have words. It was like there was a team there for the sole reason to come up with an


Like one for my kid and about my kid. Like really what is best for her. Her.

I'm not going to fault any previous staff. People try. People become hardened. I was clueless at first. Then I was angry for the next few. I was fed up for a few. I was not an easy person to deal with. Then I just became tired. So tired. I didn't want to talk about how disabled she is. I didn't want to have group pow wows over it.

Last year was a transition year. The teacher she had for 3 years had retired. I was so defeated. I don't want to start over. I didn't feel like  I had it in me anymore. I had been Ill with Pneumonia. I was in pain all the time from a spinal injury that was yet to be diagnosed. My husband was unemployed...again.

I remember going in for meet the teacher night. I didn't know her. At least I thought I didn't . Turned out she had been at the last IEP.

I went in with Abby's PODD book, a switch, her Tobii and one request. Give her the benefit of the doubt. Look in her eyes and believe in her. She did. From that moment.

At the beginning of the year. The first day actually. I knew this year would be better. A little more hope. Abby's PT from Early Childhood was the new head PT for the district. She believes in her.

She was the one today...for the first time, that said, " She has met her goals. We need to add to it. She more than tripled it. YAAAAHHHHH!!!!

Then she said it. She said it unscripted and without prompting. She said the words us families only know about and say to each other.

She called it the monster.

".... It all depends on how the MONSTER is affecting her that day."

I shocked everyone I think by bursting into tears. She got it. She paid attention. She had been listening and she knew. Not that day. Not today. But all along. Even with 4 years away from Abby. She knew. I almost can't even type my heart is so full.

Someone..not one of us gets that Abby is trapped. That something has her and we can't see it. We can't kick it's ass and it has all the power. The monster that stole her in the night..that's what we call it...dragged kicking and screaming into a world all her own.

And by my reaction to that statement. I poured tears. I couldn't complete a sentence for a few minutes...I'm sure the rest of the team get it now too

There is hope in this world.