Sometimes Autism Hurts

Every now and again I have those moments. When optimism, faith and hope give way to an aching sadness. Moments when autism goes right for my heartstrings and tugs at them until it hurts. Moments when the worries I have about my daughter's future leave me unable to simply focus on the here and now. Moments when the accomplishments and milestones of yesterday do little to soothe the fears and worries I have for my daughter's future.

I'd like to think it's okay to have those moments. I am only human after all. Yes, my daughter is on the "high functioning" end of the spectrum. And yes, she has come incredibly far since her diagnosis at age three. I know all of that. But that doesn't mean that she doesn't continue to have very real struggles. She does.  She is 13-years-old, with the body of a young woman and the heart and soul of a little girl.

I took my daughter shopping recently. As is usually the case, it was a struggle for her. And, truth be told, it is a struggle for me. If she were a "typical" teenager, we might clash over styles of what is and is not appropriate to wear. But I shop with my daughter today, much the same way as I did when she was a child. Stores overwhelm her. She struggles to be able to identify things that she likes or doesn't like. Much of what we take into the fitting room are things that I select for her, as she follows closely behind me, chewing on her fingernails or stimming. I go into the fitting room and help her to adjust clothes properly, so that we can assess their fit. The routine not so very different from the routines we followed when she was in grade school. But she is not in grade school now. And as I look into the mirror, helping her to straighten or adjust whatever outfit she is trying on, I sometimes find myself flashing ahead. I wonder if this will be the scene that we continue to reenact 10 years from now, 20 years from now or even beyond.

And I have similar moments when we contend with personal care and hygiene. Will we still be making lists and schedules for her long past the stages of puberty and into adulthood? I sometimes have images of Post-It notes wallpapering every inch of her living space.

And how will my child, who lives life in a very literal world, navigate her way through the language of sarcasm, metaphors, idioms and expressions that constitute so much of the outside world? She takes people at their word, trusting that they mean what they say and have said what they mean. Sometimes it is funny to listen to her responses. When we say, "You are full of it." And she answers, "I'm full of what?"  Other times, the innocence and naiveté of her words cause a palpable ache that stays with me for a while. Today, Yael's younger sister told her that she had decided to go to clown school when she grew up. With a straight face she went on to say that since she likes makeup and being silly, she thought it would be a good career. Besides climbing into that tiny car with all the other clowns sure looked like fun. Unable to detect the sarcasm in her voice, Yael concurred, even adding, with great kindness and support, that she believed her sister would make a great clown.

And of course, the question of her independence is never far away. How independent a life will she be able to live? How much and what kind of help and support will she need? And how will we be able to give it to her? The financial fears alone are enough to keep me up at night.

Let me say this. My daughter can live with me until the day I die. I do not see the fears that I carry through the lens of burden or obligation. I will care for my daughter in whatever way she needs me to and I will do so with love. I also don't see these fears as diminishing all that my daughter has accomplished and will yet accomplish. I place no limits on her and I am reminded daily of her tenacity, her strength and her courage. I am her biggest cheerleader and always will be. But doesn't true acceptance mean honestly acknowledging the highs and the lows, the hardships as well as the successes?

I am her mother. And in many ways she is my most vulnerable child. So every now and again I worry. I just do. Every now and again I hurt. Because there is no way around the fact that autism has made and will continue to make her life more challenging. What is wrong with owning that out loud? And why, when I do, must people immediately remind me how great my kid is doing?  As if I don't see that. As if that means my sadness, fear or worry is without merit. Why can't they just let me feel what I need to feel?

There is a place where fear resides, deep in my heart. I try not to visit it often. Instead I approach most days with hope, believing in the promise of what is yet to be. But I am human and every now and again that place in my heartbeats just a little louder and a little stronger. And when it does, those fears come out. And so long as they don't define all of my days, I must acknowledge them and own that they exist. They are not baseless, they are very real and they are valid. So I feel them. I let myself cry. I reach out for comfort. And in living those moments out loud, through my tears, I am not giving up on my daughter; I am simply giving myself the freedom to be human and to hurt. I think I deserve that.

To hurt is as human as to breathe. (J.K. Rowling, The Tales of Beedle the Bard)