My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Monday, May 17, 2010

Last Call...thoughts on a Final IEP

On Friday, we had Sarah's final IEP. I already knew what was going to be in it. And I had emotionally moved on. Or so I thought.

When we walked in the front door of CEVEC, there was a nice display in the lobby describing the various programs offered. And right there on top was a beautiful photo of Sarah's smiling face, proudly wearing her CEVEC Industries tee shirt. I felt my chest tighten a tad. Something about it bothered me. I guess I didn't like the message of this happy young woman being prepared for....a place at a sheltered workshop?!? I shoved those feelings of disappointment down as quickly as they arose.
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We were the first of the IEP entourage to arrive. John had already determined that he would not be needed at this meeting. He had taken several hours off last week when we met with Sarah's support administrator from the County Board of DD. That proved to be a wasted afternoon. Just a recount of the same old story. No jobs, no money, no services unless of course we should both die, then rest assured Sarah would move to the top of the list.
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Sarah and I sat down at the big table. I expected this to be the quickest IEP meeting of Sarah's lifetime. I truthfully didn't even care what was in it. I had already told the representative from our school district that my only goal for Sarah her final year, was to be HAPPY. If there is no future community placement for her, why waste time on meaningless goals. I was so confident this meeting would be quick, I didn't even feed Sarah before we left the house. We should have plenty of time to catch lunch before she had to report for her afternoon shift at Myers Apartments.
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While we were waiting, a few of the job coaches came in to say hi. The staff here is the best. Always friendly and looking for the best in each student. Soon Sarah's lead teacher/job coach, the representative from our school district and an administrator from our district walk in. I was not expecting to see the administrator, Mary Lou. I have always liked her. She is a straight shooter, follows up when she says she will, and does seem to genuinely care about the district's students. Still, I was surprised by her attendance.
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Copies of the IEP were passed out. There was very little on it. Fine by me. Not by Mary Lou though. She wants greater details, she wants words like "professional" spelled out. She wants this document to be a thorough review of Sarah's work abilities. She was making the teacher/job coach squirm. I was finding some odd pleasure in how this was playing out. This our final IEP, our 17th IEP, and it was not me demanding greater detail, pushing for more in-depth goals, it was an administrator of our school district. The irony of this was amusing.
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Mary Lou asked about next year. What will Sarah be doing? "We had the perfect placement for her at JCC, but Mrs. Ely said it would not work out because the students clean the daycare toys with bleach." Huhhhhh....What I'm the bad guy all of a sudden because I put the brakes on the idea of having Sarah suck in bleach fumes everyday. We eliminated bleach and all toxic cleaning chemicals from our house years ago, so that Sarah might live. It's what families do when they have a child with severe respiratory conditions and acute asthma. Darn, I'm starting to regret John not being here. We have become so good over the years of playing good cop, bad cop in these meetings. He would have said something like this without flinching, "Not exactly a perfect placement, if you'd thought about it." I become to timid to be confrontational.
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That is, until I heard the words again from the phone call..."we are over training them...there is no where for them to work when they leave here." And that's when I lost it. I could no longer hold in my frustration, my displeasure, my anger. So I simply stated, "You know, I just have to say that it is really frustrating for a parent to hear you say that. Sarah is going to be OK, we have resources to provide opportunities for her. But what about the other parents who don't? How do you think that makes them feel? They have worked, like I have, to provide the best opportunities for our children to prepare for their place in the community. And now you are telling us it just doesn't matter..."

6 comments:

Mary said...

Wow I am behind on all my reading. I was so excited you stopped by my blog and left some much needed words of calm and wisdom that I popped over to see what was going on with Sarah. I'm reminded again of the fight that others like you have waged so that I have more choices for Riley. I admire you for raising Sarah as a native and I'll be following more closely to see how this next year goes. I am sad that everything is such a fight. I'm all for advocating for our kids but it breaks my heart that every last thing takes a fight and a huge decision and then another fight. Doing what is best for our children shouldn't be so stinking difficult. Take care!

heather said...

I got a little sad when I read your post title. I dunno. I guess the whole 'real world' thing is still a little scary to me. As much as we hate the IEP process there is safety in it knowing our kids are still part of the school district's system. But once I clicked on your blog and saw that absolutely adorable picture of Sarah on the post. All was right with the world again. You have done such an amazing job as her advocate and getting her as prepared for the real world as possible. She's gonna go on to do such amazing things. Sarah gives me hope. Honestly she does!
xoxo

Tiffany said...

You go Mama bear!!!

AZ Chapman said...

IT DOSE NOT SEEM FAIR. CAN SARAH GO TO CC WHAT DOSE SHE WANT TO DO THAT SHOULD MATTER

Cindy said...

Joyce,
I admire your fighting for Sarah.
Too often, I feel I have let Beth down since she left the school district. She works at one of 'those jobs' that is beneath her capabilities. She has had a couple of job coaches, but neither has really fought for her. I now that I'm working full time, it seems I don't fight as hard as I could. Sometimes the guilt I feel is horrible.

Keep up the fight!

Amy said...

Why is being an advocate for your child so damn difficult???? I was told before our last IEP that I should bring someone who's more "educated" in the field than I am!!!! WHAT!