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.

 

 

 

17 thoughts on “What A Teen With Autism Said That Broke My Heart

  1. Again…I am sitting at my desk, at work, with tears streaming down my face. Last evening I spent another 8 hours in the Pediatric ER with Abbey and I am so worn out physically, and emotionally, but I ALWAYS feel better after I read your blog. It gives me the strength I need to keep working hard to make Abbey’s life the best it can be. I thank God everyday for you and Alan and Merrimack Hall. I guess I’d better go buy some cheese to go with the big helping of “whine” I’m experiencing today 😉

    • Sorry it’s taken me two weeks to reply to you Cindy…Abbey and I have made quite a splash with my TedxHuntsville talk and I can’t keep up with the comments and emails! You and Abbey will never know what you’ve brought to my life. I can’t imagine how I would have ever survived the past seven years without knowing y’all!

    • Thank you for taking the time to read my blog! My life has been blessed by the hundreds of people in my program, so much more than anything I could ever do for them! If your grandson is in the Huntsville area, I’d love to get him involved! We have programs for people of all ages – 23 classes each week and a day habilitation program for adults! Please email me at jenkinsdebra@me.com if you’d like more info on how to get him involved!

  2. If I need my teat ducts cleared I read your blog. Abbey is one of Elianna’s friends. Special is a perfect word for ALL that enter the doors at Merrimack Hall. I now have the Morgan Freeman role, I am Elianna’s chauffeur to “the Hall”. Keep it up !! Debra and Alan.

  3. This is a very good read. Many people do not know what it is like to be asked these questions. I know how you feel. That is my sister in a few of your photos. They all did fantastic at that show!

    • You must be Hillary’s sister? She is so amazing – such a great dancer and a big “ham” too! I can’t wait to see what she does next! Our program is growing so fast I have a hard time keeping up sometimes! But if you think their last performance was great, just wait until the Holiday Show…it’s going to be amazing!

    • I have loved getting to know Hillary – she is such a doll and a great dancer too! Our little Merrimack family has turned into something I never could have imagined and is the greatest blessing in my life!

  4. Debra, I have a huge catch in my throat after reading your blog. Your capacity to understand and inspire these kids never fails to amaze. You sure you don’t have a doctorate in child psychology!!! I am Kate Burnette’s grandmother and I am a lover of all things Merrimack!!!!!!
    I often wonder about the questions and then, oh my gosh, whatever will the answers be to the wondering of these awesome kids!!! God bless you and Merrimack Hall!!!

    • Kate has been a blessing and a gift in my life! She is one of our “original posse,” which is what my kids named our first 10 students. It is an honor to know her and watch her grow and blossom! Thank you for taking the time to read my posts and to comment. Hope to see you at the Fashion Show and Holiday Show this year!!

  5. I’ve always wondered about my future husband. He could be autistic like me, have some other disability, or be typical. Either way, all that maters is that he can love me for the rest of his life.

    • Thank you so much for reading my post and taking the time to comment! You are right…all that matters is that you find a partner who loves you for who YOU are! We all have special needs, in one form or another and I know that you will find a wonderful man who will love you wholeheartedly and treat you with the love and respect you deserve. He will surely have his own issues, as we all do. I would love to know more about you – how old you are, where you live, etc. If you would like to continue a conversation, please email me at jenkinsdebra@me.com or comment here.

  6. You describe this very well. One tip, as someone who grew up with disabilities, though not autism, is to resist the temptation to minimize the disability by saying, “We all have differences!”. It is true, in a way, but it doesn’t really address the actual issue disabled kids face. As for relationships, I think it’s worth telling disabled youth that the relationships they see on TV, in their families, and in their town are only a sliver of the range of possible relationships. Neither mental nor physical disabilities are major barriers to intimacy, especially if you don’t restrict your imagination to the kinds of relationships that make great yearbook photos. A teen may not fully absorb this message, but they might remember it a few years later when they are more ready for it. I highly recommend reading Dear 16-year-old Stella, by Stella Young, a physically disabled activist and broadcaster in Australia. Link: http://letterstothrive.tumblr.com/post/63106569774/dear-16-year-old-stella

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