The Shape of Things to Come

An outline is stamped in concrete on our now-cleared lot.

A footprint in the shape of our future home. 

It is a blank space, full of possibilities.

We walk the lot at dusk, stepping over the outline and through the soon-to-be exterior walls.

We stand at various points on the dirt floors of future rooms, imagining the placement of the interior walls, the furniture, the windows, the doors.

Our son twirls his beads and follows along, listening as we describe how the rooms will be laid out. 

We move “outside” to the back patio to discuss the best locations for dog poop and a potential pool. Our lot is propped up by short retaining walls, so it sits a few feet higher than the lots behind us on either side. My son is taller than the block fence being built across the back corner, and as he leans his elbows on it to peer into the neighbor’s yard, we envision pots and plants strategically placed against the fence—to enhance the look of our small yard, and to prevent any peeping-tom misunderstandings with our new neighbors.

Soon, the foundation will be poured, the framing will begin, and the floor plan will become clearer. 

And, as the house takes form, the priorities for prepping our son for the move come into focus, too. There are many strategies we’ll need to incorporate to help our son live comfortably and safely here, even though he’ll never be completely “on his own.” Skills to be taught—some sooner, many others over time. Adjustments to be made to his typical routines and the placement of preferred items in his new space.

And, perhaps a social story about “How Not to be a Nosy Neighbor.”

Brick by brick, it’s coming into shape.

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Prepping for the Long Haul

As your special needs child reaches high school, they tell you about all these things you need to do (legally, financially, educationally) in preparation for your child’s “transition” to life after public school.

But they don’t tell you how to prepare for your transition … from parent of a school-aged child to the guardian and caregiver of a disabled adult.

My husband and I watch out of the corners of our eyes as our son’s same-age peers go to their proms and graduations, and pack up for college or careers while their parents mentally and physically gear up for their soon-to-be empty nests. We admit privately to pangs of sadness for our kid, and for us. Our son will miss out on so many “typical” young adult experiences, and our friends’ “phase two” of parenthood will look very different from our own.

These twinges of feeling “left out” are peanuts, though, compared to the anxiety of staring down the road of long-term caregiving. I worry that I’m not really up to the task. Are we making the right choices for him? As the terrors of public school IEPs fade away, will I have the strength to wage the battles that await in the sparse world of “adult services”? Read More

Room to Grow

As my son follows me around the kitchen, immediately fixing items that I move out of place, and as he monitors and resets all of our other shared spaces after we use them, I daydream about the new house we are planning. I am hoping this move, which will give our son more space and more control over that space, will calm his nerves. And mine.

My son’s new “apartment,” which will be connected to our house, will be a pretty sweet set-up. In a lot of ways, I’ve thought more about his house than ours, so it’s possible my husband and I will be living in a cardboard box next to our son’s home, I don’t know.

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A Sweet Treat

We were shocked by how fast he moved. 

As soon as he leapt off the couch, we knew exactly what he was doing. 

Really, we shouldn’t have been surprised. But my husband and I have these little moments every once in awhile, when we look at each other and go, “OK, yep, he gets it.”

This is what I mean by “strong receptive language.” It’s just hard to accurately describe the nuances of that on an intake form.

Sure, this young man has trouble with complex verbal instructions and sometimes has difficulty completing tasks that make no sense to him. 

But given the right motivation and goals that are meaningful to him, and he gets it.

So much more than anyone gives him credit for.

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Earlier in the day, I had taken him to a local bakery to pick up some cupcakes for a birthday dessert for myself :). He picked out a cookie for helping out, but he had to wait until after dinner for the cupcakes.  Read More