Shades of Gray

A stranger recently sent me an e-mail expressing her irritation with what she perceives as the media’s reporting of stories pertaining to only higher functioning children [with autism].  She has a teenage son with autism, and voiced frustration with, for example, having to leave stores because of his meltdowns and the related difficulty she has in explaining the situation to people.  Judging by the tone of her email, I truly think she erroneously believes our family’s days are rather peaceful and calm, relatively speaking.  I sensed resentment in her composition.  Want to know what I told her?  I get it.  That was my heartfelt reply.  I get it.  I know what you are saying, my friend.  I understand and my heart goes out to you—not with sympathy, but with understanding.  It was important to me that this woman—a complete stranger, knew she was heard and isn’t alone.

Having a child on the spectrum can be so darn isolating, irrespective of where he or she falls on the spectrum.  Public outings can indeed be tricky.  That’s certainly the case for our family.  It’s rare that we’re able to go somewhere that our son doesn’t act out to some degree, lesser or greater; it all depends on what’s going on.  By all accounts, he is considered to be high functioning.  What does that really mean though?  Our son is bright and by all appearances, has a very large vocabulary.  At first blush, these are things that most likely allow him to be considered “higher functioning.”  As his mother and the person who spends the greatest amount of time with him, I can tell you his vocabulary isn’t organic.  Much of what munchkin says is echolalia—the automatic repetition of vocalizations made by another person.  Jackson is simply verbally regurgitating things he has heard somewhere (usually Thomas & Friends or Curious George).  Oftentimes these things come out at very inappropriate times.  He has no governor on what he says or when/how often he says/repeats things.  His speech is rapid fire.

Admittedly, we don’t have a lot of public meltdowns.  But believe me when I tell you, Jackson exhibits his share of behaviors that constantly illicit stares, reactions and comments—none of which are favorable or desired.  Jackson often has difficulty modulating his behavior in public/crowded spaces and therefore, displays various self-stimulatory behaviors such as spinning, loudly vocalizing sounds and humming, and putting his mouth on things (i.e. shopping carts, windows, display cases and floors).   He frequently lies on the floor and spends an inordinate amount of time standing with his index fingers pressed firmly behind his earlobes because he is on sensory overload.  He also has auditory and visual processing disorders.   It’s extremely difficult for Jackson to remain focused for more than a few seconds (unless watching a favorite video), and equally difficult to grasp what he’s being told to do or not do.  We’ve been kicked out of and turned down by numerous preschool programs.  We’ve been escorted from stores and literally booted out of recreational playgroups and classes.  The comments are utterly ridiculous.  And in complete transparency, someone made a very false report to Florida’s Department of Children and Families (“DCF”) after seeing Jackson and me leaving story time at our local public library.  (Which we were forced to leave because of Jackson’s (above-mentioned) behavior(s).)  I still don’t understand that one…

All this to say, we—you and I, your family and mine, your son or daughter, and our Jackson—are walking the same walk.  In my humble opinion, autism is not black or white, only various shades of gray.  And appearances are always deceiving.  I have no answers, but humbly ask if we can support each other along the way.  I may not know you personally, but if you’re like me, you need all the love and support you can get.  I’m lifting you and your family up in prayer.  I’ve no answers.  I’ve no solutions. I’ve no excuses.  I simply want you to know I’m on your side—and I hope you’re on mine.  Lord knows, I need all the support I can get.

Blessings and peace to you.

Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart. ~ Marcus Aelius Aurelius

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