Thursday, May 29, 2014

PWS Awareness Day 29: Yearning for Independence

Oscar left on another class camping trip this morning. With the success of his Yosemite trip still fresh, I kind of slacked on the packing this time.  Last week, on the day the luggage was due for teacher inspection, I jumped out of bed in a panic and jammed the required items into his navy blue duffel.  Two t-shirts, shorts, a fleece, long underwear, a warm hat, etc.  Paul pulled out a sleeping bag and Oscar quickly climbed in to see if he fit. He didn't. They raced back to the closet (waking up Abe) and pulled down a bigger one and stuffed it into the sack. We had that kid mostly packed in ten minutes.

And the same thing happened today.  I overslept and woke in yet another panic, having forgotten about the trip.  Oscar's van would be at the stop in twenty minutes and we still needed to round up the remaining items.  The toothbrush, the meds (darn, the meds! forgot to tell his teacher about the meds), the crocs, a flashlight, a hat, his book.

"Does Johnny know the plan?" Oscar asked.  He meant the food plan.  His teacher and I met last week, talked logistics and looked over the menu. He's been in charge of Oscar's food before, he's a food security pro.  I only provided guidance on the quantities.

"Yep, Johnny and I talked it over last week.  He knows," I nodded.

"Good. That's covered. Johnny knows the plan. Johnny knows," Oscar told himself as he shoved his feet into his shoes, laces still tied.

Even with food security and a plan in place, I still noticed an edge of anxiety in Oscar's voice.  It happens any time we travel, any time our routine changes.  Consistency is key, I thought, listening to him.

With his pillow, a giraffe stuffy, and his toiletries hastily crammed into a paper bag, he slung his backpack over his shoulder and raced out the door.

"Love you Oskie! Have fun!" I yelled, following him onto the porch, letting the heat from the sun-warmed concrete soak into my bare feet while I reveled in the feeling that I was not worried.

"I will! Of course!" he called, not looking back.  His steps were springy, exaggerated, his wave large and sweeping.  He was so happy to be going, energized by the independence these trips imply.

Lately he's been very focused on independence, on what his life will be like after high school.  His once weekly mentions of life beyond our home have increased to once or twice daily.

Yesterday it was:   "Mom, I really want to work on my money skills this summer, for when I'm on my own."

And before that:  "Mom, I'm worried about how I'm going to afford my house, when I'm older."

And:  "Only five more years till I move out.  I need to be ready."

The kicker:  "I really want to get into a good college."

I don't know yet what college will look like for Oscar.  He is bright, but processes slowly, hard-working, but struggles with thinking abstractly.   More than one class at a time would be overwhelming. Living alone isn't possible, and any "roommate" would need to be a paid behaviorally trained aide willing to live with food security.  I'd always figured he'd live in a group home, but maybe assisted living will work.  Because Oscar will always need support.

But for now I just nod, resolved to keep helping him toward his goals, hoping that we will find the right situation when the time comes.

Oscar trying to lug all his gear through the school hallway.

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