January 17, 2016

Designing a Home for Autism

I’ve spent my career working for technology companies in Silicon Valley. But I almost gave it up to become an Interior Designer. In the end, I decided to keep my tech job, but planned to use my skills to make my own home beautiful.

Then we had kids. And one kid in particular, my eight year old, Moe, has influenced my new design style. I use that word loosely. Our home is designed purely to make things easier and safer for Moe. Let’s call it “nouveau practical” or “Moe­nimalist.” (It’s okay to groan.)

Moe’s Room

When we’re out with Moe, we have to hold his hand nearly constantly. So home needs to be the place he can have some freedom. It’s hard to make an entire house safe for Moe, a strong and active kid, with Spiderman­like climbing skills, but little sense of safety or rules. I want Moe’s room to be his sanctuary.

Moe’s room has only a bed, some soft pads on the floor and a big crash pillow. The dresser that my husband painstakingly stained when I was pregnant had to go because Moe was climbing on ­ and jumping off ­ it. We put a tall narrow dresser in the closet instead.

The room, though bare, doesn’t scream “autism!” I even attempted a bit of a retro­-surfer theme, complete with surfboard decal and comforter. But look closely and you’ll see that the surfboard blanket is weighted. The closet that holds Moe’s clothes also contains a diaper genie because he’s still in pull­ups. There’s a drawer dedicated to chewies. And a lock on the closet door. There’s a carabiner hanging from the ceiling so we can hang a swing, a comfortable spot for Moe to use his iPad or look through magazines.

Our most ingenious invention was created to keep Moe from jumping off his window ledge. We were afraid he was going to hurt himself, so we installed a sheet of clear acrylic across the window. This also allowed us to hang blinds, in between the window and the acrylic. Prior to this, he tore his wood blinds down, and we had to put a nearly opaque film on the window so it would be dark in the room at night.

I think Moe really likes his room. When his “motor is running high” he can go there to calm down. He has figured out an ingenious way to spin the swing really fast when he wants stimulation. The walls are dirty from Moe’s feet as he pushes the swing. There are bits of the magazines he likes to tear up all over the floor.

Everywhere else

The rest of the house varies by room. Every door, including closets, is childproofed. A couple of doors have keypad locks so my daughter can get into her room and the bathroom without needing help.

We’ve got a trampoline and locked toy cabinet in the living room and a locked toy cabinet. (The latter more for mess control than safety.) For a while, as part of Moe’s homeschool program, we had little pieces of blue painters tape with velcro on them in front of every room in the house. There’s a baby gate across the kitchen. It doesn’t keep Moe out but it slows him down a little. Some rooms, like our office and master bedroom are full. My daughter has a lot of toys and art supplies that I’d much rather keep in a common play area. Other rooms are nearly empty. There are no curtains in the living room and very few paintings on the wall. I can’t have shelves to display knick­knacks or family photos. Our floors are beat up and need to be refinished. I agonized over which white to choose for our walls. Instead of “Winter White,” I should have found the best paint match for the marks Moe leaves as he slides his fingers along the walls.

I could go on. There are so many ways we’ve altered the design of our house and the design of our lives, to meet Moe’s needs. I’m not always happy about it. My house can feel closed and dark, when I really want open and light. It isn’t beautiful. But Moe is safe and comfortable here. And there is beauty in that.

This post was originally written for Autism Speaks.

January 1, 2016

Episode MMXVI: A New Hope

There's a Ben Folds song I've written about before called "Picture Window." It tells the story of a mom who "checked into the hospital new year's eve. Nothing to be done about that." The day doesn't matter. A new year won't change anything. Much like the rainbows and daffodils painted on the hospital walls, the symbolism of a new year is meaningless. Even as another mom hands her a glass of champagne, she knows her son will still be sick next year.

She catches a glimpse of the fireworks through the big picture window. And despite everything, feels her spirits rise. She can't help it.

2015 was a rough year here. And despite the fact that January 1 is just another day, it does feel like a new beginning. The symbolism can be tough. We set expectations that things are going to be different just because the page on the calendar turned. And when things aren't different, when you don't suddenly become more motivated, thinner, healthier, richer or generally happier, we set ourselves up for disappointment. Again.

But the idea of a clean slate is also liberating. We give ourselves permission to start something. To try to improve. To pretend even for a few days that things are going to be better. And sometimes - lots of times - they do. So we toast a new year and to all the possibilities it brings.

I know this year is going to be hard. The challenges of living with severe autism are not going away. But for now I'm going to let a glow of a fun night with friends linger, place a little hope that Moe's return to school will bring positive changes for him and us, and remind myself of the good things in my life. There are many.

I'm going to allow my spirits to rise.


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