mirrorMy colleague and fellow mom Katrina recently sent me an article in the NY Times written by a woman facing an empty nest as her last child was about to graduate from college. She wrestled with figuring out whom she would be moving forward when so much of her perception of who she is had been based on her role as mother. We certainly could relate to feeling a singular identity however we did wonder aloud if we would ever feel like empty-nesters given that we have children with autism who will require oversight for life.

It also reminded me of an exercise I had hoped to do one day with parents of children with autism regarding their self-identity. I called it the I Am exercise and here is how it started . . .

Many years ago, when my son was in sixth grade, his teacher gave the class a skeleton for a poem about themselves. It was titled I Am and each line started with I + verb. My son decided on I Am a Soccer Fan and wrote about his favorite sport. He told me of a classmate’s I Am A Frog-Loving Girl and others. It got me thinking, “Who am I?” and the immediate reply in my brain was this:

I Am a Parent of a Child with Autism

I copied the prompts and took all of thirty seconds to fill them in. When I read it back to myself, I became aware of thoughts and feelings related to acceptance and self-efficacy that I hadn’t ever put into words. I tucked it away thinking it might come in handy one day.

I AM 

I am a parent of a child with autism

I wonder what goes on in her brain

I hear her voice and it is music

I see her smile and my heart melts

I want her to be happy and healthy

I am a parent of a child with autism

 

I pretend that all is well

I feel the weight of care-giving

I touch her sweet face and know what perfection is

I worry what will happen after I am gone

I sadden when I think that we still have no answers

I am a parent of a child with autism

 

I understand that science is slow

I dream that she talks to me

I try to stay strong and positive

I say I love you all day long

I hope not another generation must bear this

I am a parent of a child with autism

 

Fast forward to today and a group of parents I know who have children with autism and significant behavioral challenges. I asked them to do the exercise, reflect on it, and share with the group if they felt comfortable.

I drew these responses:

I pretend…

To be a normal family and that we are okay

That I’m entitled to free time, but no amount of work is ever enough

That I am getting enough sleep

To be happy

 

And I try . . .

Not to show my sadness and grief

To stay positive

To stay strong for as long as I can

To love them well

My best

 

After that, I handed them a second sheet with the same prompt minus the words “parent” and “child with autism” and asked them to complete it without using these words.

That one, it turns out, wasn’t as easy for them. I provided some cues, such as to think about not just other roles they have in the outside world but who they are inside – their spirit, their being.  Ah, now we were getting somewhere.

What resulted was a moving experience of self-reflection. There were tears and laughs and head nods as parents read aloud. There is something fiercely validating about sharing one’s soul with others who get it and having them bear witness to our pain and joy.

Yes, we are parents of children with autism. But just as autism doesn’t fully define our children, it doesn’t fully define us either. No doubt it is an all-consuming role and one that we don’t easily or often have a chance to slip out of. But amongst our group we discovered a fun-loving parent, a strong and empowered woman, a lover of all things chocolate and many other things that we are.

Who are you?

I Am . . .

What’s the first thing that pops into your mind when you read this? Try the two exercises described above to help find out.

References:

After the Children Have Gone by Madeline Levine, May 11, 2013 in the New York Times.