Home > In Their Own Words > ‘Tis the Season, 2011

‘Tis the Season, 2011

This “In Their Own Words” is by Shelley Stolaroff Segal. Segal is a playwright, performer, and essayist living in Greensboro, North Carolina.  Her latest play focused on autism and race and was performed at the Manhattan Repertory Theater and TEDxEast.  Her fourteen-year-old autistic son, Josh, is her divine inspiration, as is his equally divine twin sister, Jordan.

It’s that time of year again.  Time to reflect on the past twelve months and count my blessings. 2011 was a strange ride, full of jarring twists and turns. I’ve lost a few marbles but added a dress size. My son, Josh, a low-functioning but charming fifteen-year-old, is still in the throes of puberty. (Geez, will it ever end?) Despite some cognitive regression, his social skills have improved greatly. He knows more restaurant managers than I do. Good thing, because I’m a lousy cook. So, I will give thanks for my son’s growing sociability, his love of school and family, and recognize a few more of the year’s blessings:

*I’m grateful that Josh likes the cafeteria as much as I do. We try to arrive around 4:00 to miss the dinner rush.

*I’m grateful that Josh’s limited vocabulary is becoming more age-appropriate.  Gus, one of his longtime aides, has taught him how to say, “I want to drink beer at Hooters.” It doesn’t matter that Josh doesn’t understand what he’s saying. Gus is still delighted.

*I’m grateful that only chemicals give me headaches instead of the pubescent odors that assault my nose every day.

*I’m grateful for Josh’s laugh.

*I’m grateful–thrilled actually—that my son and his twin sister, Jordan, are going to the same school for the first time in their lives. Schlepping them to and fro every day is a pleasure. Really.  I tear up sometimes when I watch them walk in together.  Jordan hugs her brother goodbye and shakes hands with his classmates before beating the bell to her own class.

*I’m grateful that I don’t pull my hair out over Josh’s seizures.  It falls out painlessly.

*I’m grateful that we haven’t given up on Josh’s speech.

*I’m grateful that Josh is obsessed with “sook.”  With school.  Every morning he shouts the word deliriously in the shower, and at the table, and from the rooftops. “SOOK!  SOOK!!”  It’s only a problem on weekends and holidays.

*I’m grateful that the thickening hair on Josh’s legs is finally covering his bug bites.

*I’m grateful that homecoming weekend was more sweet than bitter.  I allowed myself to cry only for a minute when nobody was around.  I always thought my twins would be double-dating in high school. But I was thrilled for my daughter, who looked radiant, thrilled about her very sweet boyfriend, and thrilled that my son didn’t care one bit about what he was supposedly missing.

“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. December 26, 2011 at 4:17 pm

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  2. DeLanie
    December 26, 2011 at 4:28 pm

    Wow…I have a 16yr old son diagnosed pdd and I can so relate to your joys, your sighs, your tears, the social hurdles…I feel you! I am also heavily involved in theater and would LOVE to read/see your play! Is there a video or a script i can purchase…? Theater is such an awesome way to get a message across without people even realizing youre getting a message across!! I have often toyed with the idea of writting a piece..but I am not a writer. But to find something already written would be a GODSEND!!! God bless you– dont lose heart!

  3. Shelley Stolaroff Segal
    December 29, 2011 at 2:01 pm

    Thank you so much for your lovely message. And I agree with your sentiments about the theater. I’m sending you a link to the TED video of MY SON which was shot in New York last year. It’s a fifteen-minute abbreviated version of the the full-length, (chop chop) but it will give you an idea about the presentation’s edge. I’ve performed it here at the Civil Rights Museum with a different actress but she delivers an equally rich portrayal. Please let me know if you’d like more information, and best wishes for a fantastic 2012!

    Shelley

  4. Shelley Stolaroff Segal
    December 29, 2011 at 2:38 pm

    Here’s the link:

    Take care.

  5. Tara Rossato
    January 4, 2012 at 6:26 pm

    I think that this insight is very entertaining. I too have a sibling who is a adolescent male. We often go to hooters as well. Thanks for such a humorous outlook at the disablilty. Have a wonderful holiday and best wishes to you and your son.

  6. CB
    January 9, 2012 at 4:01 pm

    Thank you for writing this message, it brought a smile to my face. I work with children with autism and I can closely relate to the joys you experience with your son. I have learned while working with children with disabilities that it is important to find joy in the small and often unappreciated things in life like laughter. Although these kids find comfort in routine and stable environments, going to new schools and experiencing the changes that come along with growing older just gives us something to smile at and be proud of. I am sure many parents, siblings, and friends of individuals with autism are grateful that you took the time to share your experiences with your son. I hope the new year brings your family lots of things to be grateful for and many joys.

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