IEP. Three letters that have often invoked dread in many a parent. But this year, those letters are making me feel positively gleeful about our girl.
It’s almost time for Tess’s annual IEP meeting. IEP stands for Individualized Education Plan, a document that her school team and our family work on together to set goals for her special education programming each year.
These meetings can be tough. Exhausting. There have been times in Tess’s educational journey when administrators were so stubborn and obstructive that I wanted to throw my laptop at them. But let me assure you: what I’m about to tell you is quite the opposite. Tess has made amazing progress this past year, and we’re thinking about what comes next.
The Scores
We get written progress reports about her IEP goals. Each goal gets a score out of 6: 1 means they haven’t worked on it, 2 and 3 mean some progress, 4 means the goal is met, 5 means regression, and 6 means no progress.
Tess has a bunch of 4s on her report. She crushed several of her goals. They’re old news now. We need to come up with new ones to push her, challenge her to take the next steps.
What She’s Accomplished
One met goal involves her communication device. The goal was about navigating to other pages and making independent choices. If you’ve ever had a child with a speech-generating device, and you’ve had even a suspicion that they might just be pushing random buttons, this is a goal that matters deeply.
Tess independently navigates to additional choices on her device, particularly to request specific books and cooking videos. She’s used it to send greetings and express likes and dislikes. In other words, she has meaning she wants to communicate, and she’s using the device as intended. Nothing random about it. She has feelings. Preferences. Things she likes and doesn’t like. She’s telling us. Most importantly, she’s realizing that she’s not stuck with only the buttons visible on the screen. She can navigate, explore, find the choice she wants, and press that button.
Another met goal involves placing objects into containers on verbal request. We see this at home too. Upon arriving from the bus, she unzips her lunchbox, removes the food container, puts it away, and puts her ice pack into the freezer. Every time.
The Coffee Cart
This is where it gets exciting. At school, there’s a coffee cart, and Tess is part of running it. She pushes it all around the building. When someone wants to order, she stops, uses her communication device to welcome them, and asks if they’d like a menu. If they say yes, she hands them one. She’s part of a team that caffeinates students and staff throughout the entire high school.
The cart is key because at 16, we’re now looking at job training for Tess. We’re beginning the years-long process of figuring out what kind of work she can do, what skills she needs, and how to set her up for success. Running the cart is like an all-in-one vocational boot camp: communication, being social, sorting, putting things in and out, waiting and taking turns, completing a complicated multi-step job routine. She loves it, because it lets her connect with far more people than she would sitting in a single room all day.
Looking AheadAfter crushing her IEP goals, our daughter with Hao-Fountain syndrome is now running a coffee cart at her high school as part of vocational training. Here’s what that means for her future.
The sheer number of goals she’s knocked out of the park tells us she’s saying, in her own way: I’m ready. I want to learn. I want to work on stuff. I can do hard things. I want to connect with more people. As we set new goals, we want to see even more independence. More initiating from her. Not following someone else’s idea of what to do or say, but offering her own plan, her own project.
Tess has Hao-Fountain syndrome, a rare genetic condition affecting about 315 known individuals worldwide. Learn more at usp7.org.