Being Jessa’s Mom

By Karin Morgen

Anyone who has ever encountered me, whether in person or digitally knows that there is one focus in my life.  I am single minded.  I am her mother.  She is Jessa.  She is beautiful, (see for yourself) smart (nearly perfect scores on the English and Reading portion of the ACTs) and incredibly talented (accepted after auditions into a competitive musical theatre program where she’s working on her BFA). And yes, she also happens to have Asperger’s.

Ten years ago, Asperger’s became a part of our life, at least that’s when we became aware of it.  Jessa had been hyperlexic since she was 2.  She couldn’t however, write.  Her handwriting problem resulted in educational testing.  The local experts said her problem was nothing a “little occupational therapy couldn’t fix.”  But, on a suggestion from Deb, Jessa’s godmother, and by the sheer tenacity of her hyper- vigilant mother- that assessment was not the last word.  I researched Asperger’s, I found doctors who knew about it and six months later, we had an accurate diagnosis.  Life changes from that point forward.

I was forced to sue my school district to make sure that Jessa received an appropriate education.  I had to fight with people all along the way.  I drove 35 miles from home, sometimes twice a week, just to make sure she had the right therapy and attended a social skills group. I had to threaten to sue to get her into the right high school when they alleged that they could not accommodate her properly (A position not permitted under both US federal law and New Jersey state law since it was a public school.)  When Jessa was bullied incessantly, I had to fight and cajole and out and out threaten more litigation.  But now that she is in college, it was all worth it.

The problem with Jessa is that she seems so “normal.” I never coddled her, never gave in to the tantrums and fears.  I forced her to do things that gave her anxiety.  I lived with the fallout afterwards.  But as she developed, from an outside perspective, Jessa seems normal (or neurotypical if you prefer).  This is my great accomplishment and great failure.  Because she has adapted so well, seems so “normal,” she does not get identified as having an Autistic Spectrum Disorder.  When she exhibits some of the symptoms, people think she is “spoiled,” poorly raised, or simply a “brat.”  She is none of those things.

Jessa has never had the opportunity to meet other apparently “normal” women with an Autistic Spectrum Disorder.  In that respect she is isolated in her disability.  She has no other woman in her life who understands her anxieties, her fears, or why she sometimes behaves the way she does.  We left her social skills groups because she was so socially ahead of the others; she was not getting any more benefit. (However, I thank God every day for the folks at the Asperger’s Unit at West Bergen Mental Health in Ramsey, New Jersey.  Jessa would not be where she is without Janine and Jean!)  Finding others like you is important in this life.  I wish something like AWN’s mentoring program existed when Jessa was younger; I think she would have had a lot less depression and a lot more fun.