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In Their Own Words – The Big Dance

It was a random phone conversation of no significance. She mentioned the big dance at a local boy’s school: the first big dance of the year.

I didn’t know about the dance. I listened to who was going, names of kids I knew and some, some only vaguely. “It’s a pretty big deal, it kicks off the social for the whole school year. You remember how it was about the first dance.”I smile to myself. Yes, I remember.

A couple of names were presented as not going. I suggest they are only freshman. Maybe they are just not emotionally ready. “No,” she responds. “They really should go. They meet other kids. Those social connections are important.”

Though Sam is the same age as most of the kids named, he isn’t going. He has never gone. But I don’t say those words out loud. The obvious reason is that he doesn’t go to the school and boys outside the school are not invited.

But that isn’t the only reason of course. Quite unexpectedly I feel a brief waive of nausea. I want to stop listening but I don’t. I realize I have stopped breathing for a moment.

It’s just a dance, I remind myself. Just a dance with teenage kids.

But neatly tucked away are my youthful memories of The First Dance. All the excitement; the emotional roller coaster ride of adolescence – the delight, the terror, crushes and heartbreak; the tentative steps into a more adult world of emotion. That right of passage that most of us experience.

I want Sam to experience that. But he likely can’t. He likely won’t. Why does this particular milestone catch me by surprise? I don’t want to care. But I do.

I keep the conversation moving and ask a mindless question. This time convincing myself, it’s just a dance. Just a dance.

As I hang up the phone and walk to the kitchen, Sam is playing music. We dance with abandon as we often do. And though it isn’t the same; or even close, I hear his laughter as we twirl. I find myself smiling and realize, it will do.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

  1. Barbara P
    October 27, 2011 at 12:27 pm

    So the point of this is that you had a tough time thinking about the dance and wishing Sam could go too? If he was socially able to and in the same school?

  2. mcg128
    October 28, 2011 at 8:24 am

    Completely understand. I get this way about Halloween with my youngest who never has and does not want to dress up and with my older son who could care less about being with everyone else.
    The point was she worries he is missing those milestones that mean so much in adolescence such as school dances and the first prom/formal and all the other social situations that we fondly look back on as we age.

    • Barbara P
      October 28, 2011 at 9:14 am

      thanks for explaining. My son has all the interest but doesn’t do well with interacting with most kids. He gets so frustrated because he doesn’t have as many friends like his younger sister. He has only 1 or 2 friends and he doesn’t get to see them that often because they don’t live that close to us. It isn’t easy. I wish there were more activities for the special needs children. He gets bored very easily.

  3. Betsy Coffey
    October 28, 2011 at 10:00 am

    I felt the same way about my daughter. Then my oldest daughter, who is a SR in High School, felt that it wasn’t fair that her younger sister didn’t go to the dances. Her younger sister has, sound, light and touch issues with her Autism. So she is putting on a dance for kids who have autism or are on the spectrum who live in the area (ages 14/15-19). She is having it at the High School gym, decorations, DJ (who understands the issues), food including gluten free, door prizes, and also has a group who is helping with donating semi-formal s). She has businesses helping sponsor and parents can come. Her younger sister is nervous but excited that she can go to her first high school dance. The dance is November 19, in North Kansas City, Missouri. If you are interested in going please email and I can get you all the information. I am so happy that my daughter gets to go to her first High School Dance!

  4. ToniQuinn
    October 28, 2011 at 11:38 am

    Bestsy Coffey you have a wonderful daughter and how blessed is her younger sister to have such a big sister that cares that much about her.

    October 28, 2011 at 12:49 pm

    Thank goodness we have Mychals Learning Place in Hawthorne and Culver City, Ca!!I am guardian of my 17 yr old grand daughter who loves to dance and is looking forward to the Mychals Halloween dance. Mychals has a prom every year for its clients with a limo to take them to the ballroom so everyone can have the prom experience. What a wonderful organization. Check them out on facebook.

  6. Mary Ross
    October 28, 2011 at 1:54 pm

    Parents of those on the spectrum face these issues all the time. As the mother of a 48 year old Asperger’s I have found it never gets easier…it simply is what it is. The parents of blind kids don’t expect them to pilot planes, the parents of deaf kids know they will never have an orchestra conductor in the family…so we learn to appreciate the many good things we do have in our kids. It is our life and what we do with it is our choice…there are no knights in shining armor who will rush to the rescue! Cherish each smile, each kind word from friends and strangers and be thankful.

  7. Chris Peltier
    October 28, 2011 at 2:39 pm

    this is so powerful Janet – thank you

  8. coles-mom
    October 28, 2011 at 5:41 pm

    My son is 15. He goes to a private school, but I continue to get email blasts and phone messages from the local high school filled with info about upcoming events, dances, programs, lectures, etc. that we will never partake in. Every time I think I’ve made peace with autism, something comes and takes the wind out of my sails. I don’t think this will ever change as I will always mourn the milestones we haven’t acheived. That said, I still take joy in the accomplishments my son does make. And, the bottom line is, he is a happy guy. That speaks volumes to my heart.

  9. October 28, 2011 at 5:44 pm

    I too have thought many times about those milestones that our children should naturally have a right to. My daughter who is 20 is the middle of three girls. We have been lucky enough that she was able to attend a regular school with several modifications. In doing so she was able to attend dances and had a support class that had peers of her functioning level so they met up there. She didn’t have to have the perfect dress, the matching shoes and bag, her hair done at a salon, go out to dinner or ride in a limo. Nope she was the exact opposite of her older sister, perfectly content with me taking her to meet up with her friends and walking her into her senior prom. It was one of many of those “aha” moment she has shown me. She doesn’t desire or need to do or have everything everyone else does. She just wants to be her. It’s ME that has to let go of my ideas of what SHE needs to be content, and accept that HER “perfect” will always be a simpler, less ambitious way, but it will be HER PERFECT way and not that of anyone else’s!

    Now I think about the next milestones. Will she get married and live on her own. She talks of having children, will she be able to care for them? I hope I remember in the future, that they are HER milestones and as long as SHE is happy, is successful, and doing it with out harm to herself or others, I need to be content with her “PERFECT’S” and let go of what I thought would be perfect for her. =)

  10. October 28, 2011 at 6:39 pm

    What a perfect tale of life as a parent on the Spectrum I wish someone would wave a magic wand and silence the lucky parents who don’t walk in our shoes. They just don’t get it and they say stuff like this everyday not realizing how hard it is. Keep dancing with your son. He is beautiful.

  11. Sue P
    October 28, 2011 at 9:08 pm

    I mourned all these missed milestones for my Asperger’s son Tom. He simply wasn’t interested or even mature enough at the time. After high school, he attended three years of community college (an academic failure!), Then two years ago, when he was 21, he wanted to try out of state to another community college and live with two friends he knew from high school. While this too was an academic failure (not a big surprise), being away from home has helped him to grow up in so many ways! He still lives in the college town with his friends and looking for a job. He has been dating a girl for the past year–a wonderful compassionate young lady who is a nursing student that came home to meet us a few months ago. Tom still have a long way to go, with loads of obstacles to overcome, but I’ve come to realize that so many of the small things I stressed about–like never going to the prom were only important to ME. Love, patience, support, and acceptance of their limitations are the things we can do to help our kids to be the best they can be :-)

  12. October 28, 2011 at 11:18 pm

    Beautiful article Janet…these emotions that you so well describe are typical raw feelings (although heartbreaking at times) that are so common to all parents with children on the spectrum.

    So true Mary. Very well said. Each child is a blessing from God no matter what challenges they bring. Autism is not their fault. As their parents, grandparents, guardians, etc. we can only be here as a means of love, support, guidance & encouragement. We are so blessed to have them…they truely touch our lives by teaching us the meaning of compassion, empathy & love in this world.

  13. October 29, 2011 at 10:47 am

    love it that you and your son danced together at the end! I have a child with moderate-severe autism, but he loves to do the rumba with me. just taught him the salsa on the runway to the airplane, when it was delayed two hours for a parts change and they opened up the walkway…

  14. Mary
    October 31, 2011 at 10:58 am

    Janet, You are lucky that Sam is so happy (at least it seems so by your letter). Our 15 yr old son is very moody and unwilling to participate in most activities even though he is considered “high-functioning” (Hate the term but as a means of explaining). He misses so much and sometimes I feel so inadequate as his mom. Keep dancing!

  15. November 2, 2011 at 11:45 am

    Beautifully written. A lovely acceptance of the sadness and reality that autism brings. I also can’t help but identify with the fact that it can be socially isolating for us a parents as well. To feel so removed from the typical experience and conversation that happen amongst the parents whose kids are participating. The experience and your photo make me think of the song I Hope You Dance by Lee Ann Womack….

    I hope you never lose your sense of wonder
    You get your fill to eat
    But always keep that hunger
    May you never take one single breath for granted
    God forbid love ever leave you empty handed
    I hope you still feel small
    When you stand by the ocean
    Whenever one door closes, I hope one more opens
    Promise me you’ll give faith a fighting chance

    And when you get the choice to sit it out or dance
    I hope you dance

  16. December 10, 2011 at 11:39 am

    I have enjoyed reading all the responses. Thank you for the thoughtful words that remind me we are far from alone, and yes, we will continue to dance.

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