Love, Loss & What HE Wore

Amazingly, all in the course of one weekend, I came across three articles relating to individuals on the autism spectrum, and two of them were in the same newspaper. What a wonderful difference 20 years makes.

Twenty years ago, when my son Steven was born, the knowledge about autism was hazy at best, and identifying individuals along the spectrum wasn’t something yet done. Ironically, one year after my son was born was the first time Asperger’s Syndrome was identified in the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders) and here we are 20 years later having Asperger’s recently eliminated from the DSM-V as a separate diagnosis. It’s now wrapped under Autism Spectrum Disorder.

Asperger’s Syndrome (AS) is considered a higher functioning form of Autism, because usually individuals are highly verbal and possess average to above average intelligence. However, individuals with AS are typically considered developmentally delayed, in interests, maturity level and behaviors. For example, when he’s with his four first cousins, my son tends to gravitate to the youngest boy cousin, a 6th grader, (seven years younger) as they share similar interests.

Like other forms of Autism, “Aspies” as many identify themselves, typically have sensory processing difficulties, frequently have verbal processing delays, and are often considered socially inappropriate. They tend to be black and white thinkers and will argue their points like a seasoned lawyer. Those arguments are often during times that may be inopportune, such as in the classroom, when the teacher and classmates are more than ready to move the discussion forward!

Aspies have passionate interests and do not typically pick up on social cues, so are known for speaking about those topics long after others have lost interest. Because of their intelligence levels, Aspies frequently suffer from anxiety and depression due to awareness of their differences, as well as from exclusion and bullying.

Because Aspies look and initially sound like their typical peers, (although there are Aspies who do have a pedantic and monotone speech pattern, not all do) the bullying can be more pervasive, as it is not as clear that they have a disability, and may just seem “strange” or “geeky.” Aspies can also be very naïve, due to their difficulties picking up on social cues, which can cause them to be vulnerable in situations they misunderstand. Thank goodness for the recent popularity of shows like “The Big Bang Theory,” where smart, awkward guys are considered cute and loveable!

What does any of this have to do with my title, which I cheekily borrowed from the Nora and Delia Ephron play, Love, Loss and What I Wore? Here goes. Love and full acceptance of your special needs child, at all costs and in all circumstances, and the love and support of extended family, friends, the school system, and larger community, is the key to success for individuals and families with children who have Special Needs. Believe me, as with any child, there is a lot to love! Focus on your child’s strengths, passions and unique aspects. My son is funny, smart, adorable, charming and extremely affectionate. He is involved in several special needs sports and social groups (many of which have typical mentors). When he’s in these groups, he shines. He’s proud of who he is.

Loss is something each special needs parent faces when he hears the diagnosis for the first time, when she sees her child acting differently from typical peers and when his child cries about his differences. There is no getting around the heartache. However, the more aware the public becomes about special needs (3 articles in one weekend) and the more services and compassion that result, the brighter the outlook.

What he wore, is my favorite part of this story. One of Steven’s intense interests is skull and crossbones t-shirts, due to seeing his much older, admired sister sporting such shirts when he was young. There isn’t a skull and crossbones shirt that he sees that we don’t buy. Steven feels really “cool” when he wears them.

Also regarding what he wore and, harkening back to the love and support of others, is the story of last Christmas. Steven invented a word “Fanoje” that he considers his “catch-phrase.” Pronounced Fuh, Noj, Steven says it’s an exclamation of excitement. Well, last Christmas my three stepchildren and their significant others, each performed a “Flash Mob” style move, where they were hanging out in our kitchen and one at a time, said, “Ooh, it’s really hot in here,” and took off their sweatshirts, to reveal a bright red t-shirt with black letters, spelling Fanoje! We were hysterical and Steven loved every minute. In the end, they had Steven open a gift—his very own Fanoje t-shirt.  They all posed for pictures with their Fanoje shirts. I don’t think I need to elaborate on what a “moment” that was.

 

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About Jackie Pantaliano

Jackie Pantaliano is the proud mom of Steven, step-mom of Jeff, Melanie and Jessica, dog-mom to Lady and Freddy, and wife of Bob since 1989. She is the former leader of the Camden/Burlington County Chapter of ASPEN (Asperger Autism Spectrum Education Network) www.aspennj.org and has her own Public Relations firm, ImPRessions, LLC, www.impressionspr.net.

One thought on “Love, Loss & What HE Wore

  1. abbe gold

    I loved reading the blog. It is so good to hear how Steven is doing. I can’t believe he is 20 years old. I loved the picture. 🙂

    Reply

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