Decisions, Decisions

The walls are going up on our new home. It’s starting to become real now, even though we still have many months to go. Decisions have to be made.

I’ve never been good at making decisions. Especially making choices about things that we will live with for a very long time.

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I know it’s probably weird that I often dread making decisions about my new house. Most people would probably enjoy the process of designing their living spaces from scratch if they got the chance. But for someone who doesn’t always know what she likes, and admittedly overthinks every choice, building a new house can be torture. There are decisions to be made in every single corner. Fixtures. Flooring. Cabinets. Knobs and drawer pulls. Countertops. Sinks. Appliances. Lighting. Paint colors. Window and door styles. Baseboard size. The texture of the walls. It’s insane. We’re not even to furniture and decoration yet. How is this fun for anyone??

Of course, I’m really, really grateful to have the opportunity to create this space for our son and for us, we are so lucky to be able to do this. It is exciting. But when my husband comes home and confesses he made a decision with the crew in the field without consulting me, I’m so happy. He gets me. Read More

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Our Guessing Game

I don’t hear my son call, “Mom!….Mom! It’s not working!… Mom, can you come here?”

What I hear instead, coming from upstairs, is an exasperated grunt and a rough shift in his chair. This is often my only clue, my signal to go to him, to pointlessly ask, “What’s wrong?” To stand near him, watch what he’s doing, and try to decipher what problem has arisen.

He doesn’t say, “Hey Mom, I’m playing this video, just like I always do, on your computer? But I can’t hear the music… And now it keeps going but without the sound!”

What I see is my son sitting in front of my computer, YouTube pulled up, playing one of his latest favorite music videos. It’s silent, though, and that’s definitely not right. Read More

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.  Read More

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