How I Sometimes Forget That My Life Includes Autism

by Jill Wilbur Smith

Sometimes I forget that I’m the parent of someone who has a disability. Call it denial. Call it hope.

On good days, it’s easy to believe that I’m unaffected by autism and depression. On good days, it’s easy to think that my world is just like everyone else’s. On good days, it’s easy to forget.

OLYMPUS DIGITAL CAMERA

Then a bad day comes along, as bad days are wont to do.

If the good days have been many, strung together in a brilliant and dazzling display of calm and joy, the bad days hit hard. Crashing down on me with an unexpected force. Taunting me. Don’t forget, they tease. Life isn’t meant to be easy.

Rationally, I know that bad days aren’t reserved for families who live with disability and depression. Bad days aren’t particular. They happen to everyone.

But in that irrational, emotional place inside of me, they feel vengeful.

I’ve had a lot of good days in the past two months. I need to remember that. My mother and sister joined us for Thanksgiving. I got a promotion at work. I had a joyful Christmas spent quietly with family. I celebrated New Year’s by kicking in the ass the dark times of the past 12 months, hopefully thinking a new year will mean no more bad days. Silly me.

Maybe that’s why I’m especially saddened by the day that occurs only 10 days into 2014. What makes it a bad day is a confluence of events that might not be troubling had they all happened separately.

I’ve had an especially busy day as I transition into a new job. I’ve mostly ignored text messages from Emily in the afternoon indicating that she’s struggling. I hope that by the time I get home the storm will have passed and we can have a quiet evening. I’m at the end of my emotional tether.

I walk into the house to find Emily’s bad mood hasn’t passed. In fact things have escalated into ugly confrontations between her and her father and sister. They, too, have had a less-than-stellar day.

So, in my already emotionally fragile state, I forget that I’m the parent of someone who has autism and depression. I forget that the angry young woman lashing out at me isn’t really condemning me. She’s fighting some unseen demon that I can only imagine.

“I just want peace,” I scream at her.

“I don’t want peace, I want justice!” she replies.

I’m too exhausted to pick up my sword and help her slay her beast, whatever it might be. I turn away. I go downstairs and drink a cocktail with my husband. I leave her to cry herself to sleep alone in her dark room.

For a few more hours I pretend that she’s just choosing to be obstinate and defiant. I make believe that there isn’t a chemical imbalance in her brain that has been adversely affected by the dark Minnesota winter. I ignore the injustice I feel knowing that Asperger’s makes it difficult for her express her sadness in a socially appropriate way.

Later, I crawl into bed and turn out the light. As my eyes adjust to the darkness, I know that in the morning I will shed the mantle of denial. I will somehow find the right words to help her see through her depressive haze. I will have the strength to pick up my sword and continue to fight.

P.S. Many good days have followed since I wrote this post, with the occasional bad day thrown in to remind me of my special place in this world.

Why a Good Label Can Help You Avoid Disappointment

by Jill Wilbur Smith

My younger daughter, Sarah, loves jellied cranberry sauce. Don’t judge. She developed her taste for it from me. (I don’t know if I’m drawn to it because of the taste, the texture, or the fact that it slurps from the can in a perfect cylinder with hieroglyphic rings etched around its center.)

When Sarah was 9 or 10, she came across jellied cranberry sauce on a salad bar. It was the first item she went for when she brought her plate back to the table. She shoveled a huge piece into her mouth—a bite she immediately spat into her napkin, wiping her tongue of the offending flavor.

She hadn’t discovered jellied cranberry sauce—but pickled beets.

Imagine her surprise and disappointment.  A nice label on the salad bar would have been useful.

That’s how I feel about labels. They serve a purpose. They let you know what you’re getting so you can avoid unpleasant surprises. Good for a salad bar, even better for a person with a developmental disability.

The day my daughter Emily was diagnosed with Asperger’s was one of the most liberating of my life. I had a name for her idiosyncratic behavior. The label helped me know what to expect from her so I wouldn’t be surprised by her conduct.

Let me be clear. Emily’s label isn’t an excuse for bad behavior or a free ticket to let others take care of her. It’s just another way of understanding who she is so that we can better help her navigate the world. And so that others know what they’re getting as well.

I often tell people that Emily is on the autism spectrum, that she has Asperger’s. I don’t say it to elicit pity, but as a way to clue them in about what they can expect of her.  It helps explain why she might not look them in the eye when they talk to her. It provides context for my elation when she gets her first job at 21. It reminds them not to be surprised if she reacts to a loud noise or a bright light in a more exaggerated way than most do.

Her label helps assimilate her into society in a way that’s appropriate for her.

Lots of people like pickled beets. They’re delicious. They can be used in a variety of recipes—but never as a substitute for jellied cranberry sauce.

Emily is delightfully delicious as well. She’s wicked smart and has a quirky sense of humor. Like pickled beets, she has a little bit of an edge about her that, paired with the right set of expectations, can be phenomenal. Just don’t expect a sugary sweet disposition that melts in your mouth and you won’t be disappointed.