Tuesday, September 2, 2008

"The Storm After the Diagnoses" Poem

As some of you know I did a lot of poetry writing when my kids were younger (3 and 4)--and while I was going through the emotional roller coaster of understanding and adjusting to my kids' (who are just a year apart) diagnoses (which came at me back-to-back)--my daughter is severely autistic and my son was diagnosed as pervasive developmental delay (MR) which we know now is mild autism (aspergers). This was one of the poems (or prose) that I wrote when my world had just collapsed all around me and I was making my way without much help ... It's about our previous school system and realizing that people are just people no matter what your circumstances (or life) might be. Teachers are trained to teach our children of special needs but are not trained to deal with parents of children with special needs.

"The Storm After the Diagnoses"

When you feel like you’ve just hit bottom.
When you think it couldn’t get any worse—it does.
My daughter needed more services, and I needed more help.
My son was just newly diagnosed with a disorder
That I still couldn’t digest
So I called her school’s director for help, but got no answer.
I waited for word, and got no response.
I yielded when I should have charged;
I could take no more.
My emotions were riding high
Building like a turbulent storm;
Turning the once blue skies dark; the calm ocean fierce.
I drove to the school, opened their doors
And sailed in on my tumultuous wind.
I demand help. I demand services. I demand blue skies!
The teacher: the one with the bad reputation
Was the one I spoke with and she was not sympathetic
But rather quick and dismissive. Was I rude?
I was inquiring about her boss’s whereabouts
And desperately seeking a meeting
But she didn’t seem to care
“She’ll call, she'll call”
Was all I got in a brushing-me-off kind of way,
As if I were a nuisance like a bill collector
And was appeasing me with “It’s in the mail.”
She knew about my son’s new diagnosis
And my daughter’s new problem
But did she offer to help or understand—No!
Maddeningly enough, she barely maintained eye contact
As if she had better things to do.
I grew angrier and angrier by the minute
And wasn’t about to go away without a final word for the director
And an attention grabber for an unresponsive teacher.

“Pathetic Witch” printed in neon as bright as sun
Atop my daughters IEP for all to see.
(Funny how the teacher actually got it wrong
“Cold-hearted Witch” was what I actually called her.)
Nevertheless, small lettering of ugly words
Have a powerful way of magnifying and glow
Like a big, yellow caution sign flashing brightly in my face.
The round table struggled not to laugh
And I could barely speak.
A trust between parent and teacher had gone bad.
An agreement of confidence was broken.
An emotion of dread was unanalyzed. Or was it?
I had realized at that moment that business was business
Not matter the business and delicate circumstance.
Gossip stops nowhere especially when an unsatisfactory
Reputation warrants an extra brownie point.

She sold me out; fed me to the dogs;
Led me upstream; hung me out to dry.
Look out for number one—isn’t that the philosophy?
The ugly surfaced; the nasty prevailed;
The Cold-Hearted Witch was living up to her new name.
Institutionalize was her word of the day.
DSS was also thrown my way.
Mouths hung open. Eyes glared. Solemn mood.
Silenced lingered for what seemed like an eternity
As shock waves settled in the thick of the minute
Was this a war or a child plight? I wasn’t sure?
But pay back seemed to be in store!

Lesson number one:
Remember the rules; remember the politics; remember the game.
No matter what wrong was committed; no matter whose fault it was;
No matter what feelings were exchanged, always:
Kiss up; suck up; play the political game and be friends
No matter how much you cringe
Because you will be rewarded--your child will be serviced.


autismfamily said...

I think I found you from a comment on autism vox, have a few windows open so hard to recall.

I have two boys on opposite ends of the spectrum as well, they are 15 months apart at 12 and 13. Both now will be in Middleschool, but the HFA 13 yr old does homeschooling for the MS years.

Casdok said...

Powerful words.