Running the clock
As we were getting ready for work the other morning, Julie stopped what she was doing and quietly said, “This morning when the alarm went off, I had this thought. I realized that in a few years, the day is going to come when we won’t be waking Schuyler up for school. I don’t even know what she’ll be getting up for in the morning, or what she’ll be doing with her days.”
We talk about this a lot, and I suppose I write about it pretty often, too. I won’t apologize for the repetition; it’s the colossal bugbear that haunts our thoughts and disrupts our sleep. Three years. Just three years remain before Schuyler is out of school. Three years to figure out what that looks like. One more year of high school, then two years of senior high. (Don’t ask; her school district does things weirdly.) And then she’s away, off on the next adventure. What that looks like, no one knows. But it’s coming up fast, and that inevitability is beginning to inform more and more of her life.
When Schuyler was in elementary school, she repeatedly told us, “School is fun.” That was back when she was in a special assistive technology classroom, and the world of communication was opening to her. When she got to middle school, her mantra changed to “School is hard.” She was being challenged, by teachers who wanted to include her in mainstream classes and band directors who were committed to using music and the community of band kids to give her a place in the world all her own. It wasn’t always smooth, and we weren’t always on the exact same page, but her team believed in her, and in the possibilities that her future held. Just like we do.
In this past year of high school, Schuyler has simply said “School is boring.”
We’ve reached a stage where Schuyler’s differences and challenges aren’t an appealing challenge at her school. It’s not cute anymore. It feels like her educational goals have become less about finding the way to reach Schuyler and more about getting her through her requirements and being done with public school, to be reclassified as “Not Our Problem”. It feels like they are simply ready for her to move on to whatever comes next.
Maybe the worst part? I kind of feel the same way.
Summer can’t get here soon enough.
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About The Author
Rob
Robert Rummel-Hudson is the author of "Schuyler’s Monster: A Father’s Journey with His Wordless Daughter", which tells the story of raising a little girl with a disability and learning to become the father she needs. It was published in February 2008 by St. Martin’s Press.
Hi Rob –
I’ve been reading your blog since Schuyler’s diagnosis. One of my closest friend’s son graduated from this program last week – I think it is a place that Schuyler could thrive. It just received status such that student loans can be taken out to attend the program. If you are at all interested, I’m happy to put you in touch with my friend.
-Theresa
http://beyondacademics.uncg.edu/
University of North Carolina, Greensboro, Beyond Academics
An innovative program of study for students with intellectual and developmental disabilities
An innovative, inclusive program. The University of North Carolina at Greensboro, in conjunction with its nonprofit agency partner Beyond Academics, has pioneered a novel program of study for students with intellectual and developmental disabilities.
Integrative Community Studies (ICS)
A four-year program of study offered by the Office of the Provost and coordinated by the Office of Comprehensive Transition and Post-Secondary Education at UNCG.
• Promotes personal growth and development.
• Employs a flexible, interdisciplinary approach to meeting learning outcomes.
• Offers comprehensive academic supports and instruction.
• Boasts a rich, diverse, and inclusive environment.
ICS students work to expand their abilities to live independently, obtain employment of their choice, and involve themselves meaningfully with the community.
• Complete a combination of certificate and interdisciplinary courses.
• Participate in experiential practical or internship activities.
The 3 Core ICS Competencies
• self-determination through goal setting, advocacy, decision making, history of rights & social justice, civic engagement, and problem solving
• life planning through accessing community resources, building natural supports, managing health & finances, and person-centered planning methods
• career development through career exploration, internships, discovery of interests and strengths, and job development and employer connections
I’m sure its hard to be a HS student, bored in school and hard to be parents wondering what will become of her. In one way, the enormity of that seems daunting. Yet, as I sit here listening to the rain quietly hit the slanted roof over my office, overwhelmed with my own life and work, I feel such optimism for the opportunities Schuyler has. It will be fun to hear about what Schuyler chooses to do after high school. That is terrific she has three years of high school to ponder that and explore. I’m so excited for her. She’s lucky she has you both to help her explore those opportunities. I have a friend to introduce you to. She just gave a talk last weekend on this subject and her message is really solid.
Re: Not Our Problem: Just wanted to tell you what happened with my son who has autism, but high-functioning. Thru much of his academic career, teacher after teacher would tell us that he would “grow out of it” or someday find his niche/passion, and then he would be successful. He is 26 years old now, has been steadily employed all along, and has even gotten several promotions, so it all turned out OK. It may have turned out better, tho, had the school not convinced him to sign off on his “graduation”, which then prevented him from accessing certain services that were available to him until age 21 +11 months. This would have included job training, school district-subsidized tech school or college tuition, and a mentor to guide him and oversee his program. He had been failing a number of his regular ed classes (for not doing assignments; he has an extremely high IQ, but had an undiagnosed/unaddressed learning disability at the time, and was naive and socially vulnerable). We had gotten multiple letters from the high school saying , “Your child will not have enough credits to graduate on time”, so we were fully expecting him to start his new IEP after his peers had graduated. Then, somehow all the F’s were changed to D-‘s during the last week of classes, which made him eligible to graduate after all. He came home on the last day of classes and said he wanted to know when he was having his graduation party – our first clue. Surprise, surprise! Since he was 18 and not under guardianship, this was legally binding, and so out into the world he went. The school district saved a boatload of money. Our son was screwed. We had to scramble to help him navigate his new situation. We also have a young daughter with severe cognitive & physical disabilities, so we were just wising up to the system that had so utterly failed our son. Parents of kids in my daughter’s placement would often say they wished their child were more on the high-functioning side of things – not always the blessing one would think. We’re in a new district and are no longer so trusting.