A mother's story: Loving Nora, a child with Asperger's
Have you ever witnessed, say at Target or, more notoriously, at Wal-Mart, a child really having a fit? Not just screaming until the skin around the mouth turns a steely blue color while strapped in the cockpit of a shopping cart, but with body thrown onto the floor in an attempt to enhance the spectacle?
Have you ever looked at the parents? Not just as parents but as people? Have you glanced at them and wondered why they weren't doing anything to quiet their child so the rest of you wouldn't have to suffer the wrath of their scorned 3-year-old? Have you then done a double-take to check out the parents' attire? Sweat pants and T-shirts or jeans and blouses? How's their hair, if they have any left?
Have you looked upon them with pity? Or disgust?
Have you been that parent?
Anyone who answers that last question, "No," is not, in my opinion, truly a parent. Every parent should have to experience the humiliation and shame involved in a child's temper tantrum in a public forum. By the same token, any true parent wants to be the one who is able to calm the small and disgruntled beast; and while some will cave to any request, others simply ignore their grey-lipped banshee.
My Nora is a different story entirely.
My Nora has Asperger's, and while the DSM (Diagnostic and Statistical Model of Psychiatric Disorders) no longer recognizes Asperger's as a diagnosis, only autism, Nora fits its profile, albeit obsolete, to a tee.
Upon entering a bank or a department store, my otherwise-pleasant 3-year-old will begin to scream bloody murder. She won't quit until we leave, no matter what I do. Many people who are unfamiliar with Asperger's or who think it is only a mild form of autism may feel this behavior stems from her being overstimulated. Not so, in most cases. These establishments often employ security systems that operate on very high frequencies, inaudible to most of us, but piercing to a child with Asperger's.
If Nora is with me, I avoid the lobby of the bank and use the drive-up instead. We rarely go shopping, but when I must take her, it's a quick, in-and-out trip to avoid a serious, irreconcilable meltdown.
Nora is verbal, and this contradicts what many people misconceive as Asperger's. When I tell them her diagnosis, they respond by second-guessing me, stating things like, "But she talks." Yes, but she is difficult to have a conversation with. Any 3-year-old is hard to understand, you say? Not so, again. My Nora makes loud, chirping noises repetitively, sounds that could never be mistaken for words. She seems to ignore the things I say.
She will not make eye contact, and, when in my frustration I grab her little head and force her to face me while we speak, she refuses to look at me, which, when you think about it, is pretty difficult. I have not seen a child who can look sideways out of the corners of her eyes nearly as well as Nora does.
These behaviors are textbook Asperger's, categorized under stimulation, or "stimming," and they are a coping method these children use to calm themselves when stressed or in pain. My Nora has her own brand of stimming that's outside of the typical screaming, repetition and hyperactive tendencies. She takes both her middle fingers and digs them into her upper eyelids while fluttering her lashes.
Nora wakes up in the middle of the night, sometimes screaming, sometimes moaning. This is a result of reflux, from which most Asperger's children suffer. She has learned to calm herself in this situation, probably out of need. A mother who works night shifts and a father who arises only after a cruise missile has pierced the roof necessitate self-reliance in such a situation. Sadly, at this point, Nora shares a room with her older brother, who is not exactly sympathetic. On my nights off, when she arises, I often hear him telling her, "Go back to bed. Quit whining." I recognize this language as my own, repeating itself through Zane's mouth, and I cringe.
Nora is very rarely sick, which is typical of Asperger's, due to a hyperactive immune system. This may seem like a good thing, and while I won't argue it is nice now, I worry about when she is older and her immune system "burns out." I am not certain if this is how this facet of the syndrome works, but it seems logical that if a body system is taxed continuously, it eventually will suffer breakdown.
Nora is overwhelmed by physical stimulation. She cannot be hugged or snuggled, much to my dismay. She loves water, for its sensory deprivation qualities, and will remain in the bathtub for hours if I let her, long after the water has grown cold.
The most obvious symptom Nora has, though, is her lack of empathy toward others. My husband and I have a running joke that Nora will someday be a world-class assassin, but we are only half-joking. Her inability to consider others is both typical and challenging because she lives in a house with six siblings, her parents and a gentle but huge canine.
Nora is not, however, just a collection of these symptoms. She is not defined by her diagnosis, the common pitfall of many children whose parents have no idea how to manage or relate to the symptoms. Nora is a 3-year-old girl, first and foremost, and is like all other 3-year-old girls. She likes princesses and videos, though she enjoys both in excessive repetition. She likes to be told she is beautiful. She likes painted fingernails and fancy dresses, though the tactile feelings of both are sometimes too much for her to bear.
Nora is affectionate, though she is unable to snuggle. She will stroke the side of your face and tell you in her shrieky, cartoon voice that she loves you. She will kiss you; and then, in the same moment, she will hit you square in the nose, a sign she is frustrated by her condition and its limitations.
Learning to handle and accommodate Nora and her symptoms has been challenging at times. But in this, the reward for the smallest victories is magnified greatly.
When we first suspected Nora had Asperger's, we switched her to a gluten-free diet, as many have had success in doing. The changes in both her appearance and her behavior began almost immediately and were so dramatic we could not attribute them to anything else.
When we cut processed sugars and dairy, she improved again.
Getting others to support these choices is difficult in our family where it's not a birthday without a cake and where it's not Easter without a big basket full of chocolate. Christmas cannot come and go without candy galore. It's easy, though, with Nora, because she wants to eat fruit and other natural sugars and would gladly choose them over anything.
Nora has never had a physician actually diagnose her with Asperger's, though her pediatrician has suggested it several times. After all, it's no longer considered a diagnosis. It's my Nora.