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.

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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.

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4 thoughts on “How I Sometimes Forget That My Life Includes Autism

  1. Oh Jill, you will always be in my heart and mind. Your words bring strength and courage to so many who have loved ones who battle every day to make sence of their world. Keep writing you are a blessing.

  2. It’s hard — in fact, it’s one of life’s biggest challenges — to have empathy when you’re drained. I struggle with this one quite a bit in my work life. I think it’s okay, and normal, and healthy, to fall short of the mark most of the time.
    Emily struggles, but I don’t think it’s so much that Emily’s life has more suffering in it than others. She has her challenges and difficulties, but she also has many great strengths and gifts. And so do you. The difference with Emily is that, when she suffers, she doesn’t hide it like most of us do. I’d say that’s both a challenge and a gift.
    Thoreau said: “Most men lead lives of quiet desperation and go to the grave with the song still in them.” In Walt Kelly’s Pogo, he once said that Albert the Alligator lived a life of noisy desperation. In a weird way, there’s something wonderful about singing that song of desperation.

    • Harry, thank you for this reminder that our life has many strengths and gifts as well as challenges. I also love the idea of “noisy desperation.” :-)

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