What A Teen With Autism Said That Broke My Heart

Project UP rehearsal

Project UP rehearsal

She pulled me aside, saying, “I need to ask you something private.” She is a gorgeous 14-year-old girl, at that age where innocence mixes with hormones to produce the awkward beauty of a teenager.

“What is it?” I asked her, expecting her to ask me the question she usually asks me – “When are we going to dance on the stage again?” Instead, she motioned for me to lean down so she could whisper in my ear…

“Did you know that I have autism?”

I wasn’t prepared for that. I stammered around for a minute and when I got my bearings, I said, “Well, yes I do know that. But autism is only part of who you are, just like having Crohn’s disease is only part of who I am.”

“My autism makes me act strange sometimes, I think,” she said with a worried expression on her face.

“Hey, I’m with you girl! I act strange every day!” I replied.

“Are you married?” she asked.

I told her that I was and she wanted to know if I had acted strangely before I was married. I told her that of course, Alan and I both acted strangely before we met…and continue to every day. We all have degrees of “strange,” I tried to assure her.

She doesn’t make eye contact often but she looked me straight in the eye and said,

“I’m afraid that because I have autism, no one will ever want to marry me. And if no one wants to marry me, what will happen to me then?”

My breath caught in my throat and I felt those hot tears that burn your eyes when they drop…but I couldn’t let her see me cry. She was coming to me for advice and reassurance…she did not need my tears.

I told her that a woman can be happy and successful without a man in her life; that she is so young and beautiful and will meet lots of boys over the next few years; that everybody has something about themselves that they wish they could change.

I don’t think she believed me.

She finally agreed that she would try to stop worrying about getting married and instead would look forward to her first high school party, where she hopes a boy will ask her to dance. She even allowed me to give her a slight hug – she doesn’t like too much contact but she let me put my arm over her shoulder and give her a little squeeze. As she walked away from me, I saw her take a deep breath and square her shoulders. And that’s when I let the hot tears flow.

Zahra and Haleigh…a picture of friendship

Zahra and Haleigh…a picture of friendship

I have no background or training in special education or therapy. All I know about special needs is what I’ve managed to learn in the past six years by observing our students, interacting with them and asking questions of their parents. A lot of my students do not have an awareness of any difference between themselves and their typical peers. But a lot of them are aware of the differences…too aware…and this makes my heart hurt for them.

During these past six years, I’ve heard students say many things that are equally heartbreaking…things like:

I sure do wish I could get rid of this old Down syndrome. If I could get rid of this Down syndrome, I’d be just fine.

Don’t take my picture with my legs showing. People might make fun of my leg braces.

It takes me a really long time to learn stuff. Is that why people call me stupid?

The people at school don’t like me. Do you think it’s because I’m “special?”

What do you say to statements like these? How do you tell people with special needs that we all have conditions, behaviors, limitations that we wish we didn’t have? How could I possibly make a child who can’t walk think her disability isn’t worse than my long list of flaws and imperfections? Because it is terrible for someone to understand that they have challenges and limitations that will prevent them from getting everything they want out of life…how that must drag on their self-esteem and sense of worth.

Abbey, the amazing 14-year-old with cerebral palsy who I’ve written about many times, once said,

I love dancing here at Merrimack Hall. When I’m here, I feel graceful and beautiful no matter what anyone else might say about how I dance. I can dance to my heart’s content without worrying about prejudice or judgment from anyone.

I am proud of the team at Merrimack Hall and of everything they do to build our students up even when others – and their own disabilities – tear them down every day. We all stand in awe of our students, of their resilience and willingness to put themselves “out there” even when they know that they might be mocked or ridiculed. I wish I could bottle up our formula for inclusion and dispense it everywhere so that people with special needs could experience acceptance everywhere. One of the ways I’m trying to do that is through this blog…maybe by advocating and telling their stories, I can open hearts and minds to the brilliance and talents that we see in people with special needs.

The Connection Concert

The Connection Concert

When I see my young friend with autism every week, I notice that she is becoming more confident in herself with each lesson, that she is becoming less inhibited and is more willing to participate with enthusiasm. I see that she is blossoming because of the opportunity to express herself through the arts. But I wonder each week what she might encounter outside the safety of our doors that could cause her to retreat again. If she takes two steps forward in her weekly classes with us, does the world knock her backwards five steps when she leaves?

I want my young friend to have a prom date and a first kiss. I want her to go to college and drive a car. I want her to have a job and get married and have a family. But she may never get to do those things…and she knows this. Because she knows this, we will work harder and harder to protect her, even if it’s just for the few hours each week that she’s at Merrimack Hall. The world can be a cruel place to children and it can be especially cruel and cold to children with special needs. At least in our insular little world of music and dance, of painting and singing, of theatre games and yoga, we can cocoon them in our acceptance. We will encourage them continue to dream…and we will pray that someday, their dreams come true.