Home > In Their Own Words > In Their Own Words – Tis the Season…

In Their Own Words – Tis the Season…

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.

This is the time of the season when I summon my gratitude, reflect on the past year, and count my blessings.  I do this even though my son is going through puberty and I am going through my chocolate.  Josh is low-functioning and non-verbal, but ridiculously cute.  (Except when he’s practicing his latest obsession, snapping plastic items into shards.  Cutlery, C.D.s, DVDs, hangers, you name it.  His favorite two words now are “Bake it.”)

However, he’s still charming, and I want to recognize my blessings.  So in the spirit of the holidays I have listed a few of my favorites:

*I’m grateful the cats pretend to enjoy it when Josh “plays” with them.  They have as much fun as they can stand before fleeing.

*I’m grateful that when Josh drives me to drink I can grab a petite café mocha and it still packs enough punch to hold me until bedtime.

*I’m grateful for Josh’s laugh.

*I’m grateful that when Josh breaks a C.D.  it’s usually one of my carefully planted decoys.  I’d rather him snap a blank CDR into pieces than one of my Led Zeppelin albums.  Most of our sacred, recorded material now lies in the safe. Including the wedding video he targeted three months ago.

*I’m grateful my son likes to hang out with me in coffee shops. And yes, I do cheat on the gluten thing sometimes.

*I’m grateful that Josh’s childlike, high-pitched shriek has been supplanted by a low, pubescent growl.  However, that yucky in-between voice can be ear-itating as well.

*I’m grateful that Josh’s twin sister, Jordan, still loves to show him off even when he struggles to embarrass her.  Her friends might not get the plastic fixation but they enjoy his sense of humor and his quirky new devil voice.  The growl is even better.

*I’m grateful my family’s still happy, and that we’re learning to enjoy the holidays a bit more every year. We’re not half as dysfunctional as most families I know during this season.   That’s the biggest blessing of all.

“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. amy
    December 31, 2010 at 8:10 am

    He is adorable. Thanks for sharing. :-) Happy New Year!

  2. afua
    December 31, 2010 at 8:14 am

    Josh is cute.
    I am counting my blessing to for the the year just ending and the highlight of the year is we found an inclusive school for my daughter and we are delighted at her progress.

  3. December 31, 2010 at 8:31 am

    Enjoyed your article. I think finding the (ironic) humor in our autisitc children makes us, as parents, a special breed that only few can understand and appreciate. Your story put a smile on my face and reminded me of so many things I am thankful for in my son. Some qualities just define him. And yes…your son is adorable!

  4. jlorrainemartin
    December 31, 2010 at 8:32 am

    Thank you for writing this piece. I love your honesty and the way you find gratitude in the journey. Jordan sounds like an inspiring sister and person.

  5. Amanda
    December 31, 2010 at 9:00 am

    I cried when I read this… It is so hard to remember at times that somewhere in another home another family is going through the same emotional rollercoaster, heartaches and happiness. Though my son was diagnosed 6 yrs ago the pains don’t get any easier with time. He is high functioning and though 7 has the maturity of a 2-3 yr old. It is hard to see posatives when I’m wiping him because his bowls are soooo bad and he is no longer potty trained. Or when he says ” when I’m a daddy, when I grow up” and I have to look at him and wonder if that could even actually happen. This year has been so painful he was bullied at school I have been angry and bitter and mostly at God. I’m glad to stat connected to the others of us out there or you can slip away ourselves…

  6. terri burgess
    December 31, 2010 at 10:13 am

    OMG sat here laughing and knowing we have a teenager with the obsesions ( mail folded in three and flapping, with a little chewing on the end. Light bill is a soggy mess oh well) but u r right theY r so darn cute.

  7. M. Simpkins
    December 31, 2010 at 1:36 pm

    This is very touching and hits close to home. I had to share it with my mother. My little man is 4 and was diagnosed with Autism at 20 months.

  8. jennifer schultz
    December 31, 2010 at 1:40 pm

    He is gorgeous and I know that you work hard to count your blessings every day like i do. Happy new year,

  9. Paula Braddy
    January 1, 2011 at 11:23 am

    I have a son with a 6 year old autistic daughter and he is involved with a potential narcisstic women with an 11 year old daughter who has been caught torturing the autistic girl and he thinks because the narcisstic mother talked to the 11 year old that things are ok.

  10. david
    January 1, 2011 at 2:28 pm

    Nice post. You seem like you’re surviving all right. My son is 31 and I am a single dad. He still lives with me, although it is getting tougher. The holidays are real tough…long days, long weekends, no where to go, etc. I think my son’s autism has made me somewhat agraphobic. Has that happened to anyone else out there?

  11. Nancy
    January 1, 2011 at 7:32 pm

    Your son is very cute! I have one at home very similar but he is in the moderate area of Autism. I am very grateful he can talk and most recently he is learning how to joke around a little!! The little smile he gives me when he tries out one of his lines on me is just precious! Also, the mustache he has decided to grow is the bomb. He is 17, I have to shave him and he has no idea that girls think he’s cute! It’s a wild and funny trip we’re on!! Enjoy your wonderful young man. You are amazing!

  12. andrea
    January 2, 2011 at 5:24 am

    Loved the description of the change from child-like high-pitched scream to low, pubescent growl. Absolutely captures the change in my 13-year old son. Loved your humor, honesty, and inspiration as well. Thanks for making me laugh!

  13. tom
    January 2, 2011 at 11:07 am

    I heard the IAN Project ad on the radio and one speaker said they are searching for the one thing they all have in common. How about vaccinations? What else could it be? I actually read in the Parent Guide about a family that has three autistic kids. One – who would know? Two – ask some questions. Three – you gotta be kidding me – they didnt change anything they did with the first two and lo-and-behold, the third is now afflicted. Come on, at some point the parents need to open their minds and look around. autistic kids are loved and as beautiful as any other but what an incredible burden on their care-givers and the larger society. take off the blinders, forgive ourselves for not knowing before – but now, with all those injured kids, it’s time to wake up. The doctors are poisoning our kids.

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