EDITOR’S NOTE: Please welcome KielM to TSParentsOnline. She is the author of the Momma Has Monsters blog, and she will be blogging here from time to time now as well.
Sometimes I think this would all be a little bit easier if I just had a quirky shirt for my boy to wear every day of the week. Because one of the trickier parts of neurological disorders is that they can be totally invisible to the untrained or, as I like to call them, “judgey eyes” of the not-so-well-meaning public.
So what looks like a typical kid acting like a hyper jerk could actually be a child with special needs coping with their environment the best they can. What I’m getting at is, I get it. People will stare. People do stare — a lot. I should at least be able to mess with them a little if they can’t keep their horse eyeing to themselves!
That brings me my list of shirts I wish my 5-year-old boy could wear:
- “I’m Not An A–, I Have Asperger’s” — No, really, he isn’t (usually) and as my husband, Mr. Monster, would say, “I really hope we don’t have to run into that person again. I feel really bad that our son’s meltdown may have ruined two minutes of their day. I hope for their sake that never happens again. I’m sure they were really uncomfortable…” Gotta love a man with a sense of humor. Really, though, social cues and rules are just as confusing to the aspie person, as the English language is to a non-English speaker. So many double meanings and rules that contradict themselves! A child with Asperger’s learning these social rules for the first time is coming from a totally foreign place where metaphors and analogies, subtle looks or posturing and universally accepted/expected behaviors are in a language they don’t speak yet. So no, my kiddo is not an a–, he’s still learning and we are working on it!
- “Coprolalia Is A MotherF#@$e%*!” — Yeah, I said it. It really is, and there is nothing to be done about it. My son happens to be part of the 10 percent of people with Tourette Syndrome whose tics actually manifest vocally and encompass vulgar words (the condition is called coprolalia). They started out as words that didn’t match the context of a conversation, but thanks to some really considerate teenage girls one aisle over in Walmart’s toy department, the word b—h has been a repeat offender for more than a year now. I’m sure you can imagine what a great icebreaker that is on the playground! Now, I’m not one of those people who despises how Tourette Syndrome is portrayed in the media, but I get why some people are. The amount of people who are affected by coprolalia is so small and like most generalizations its not very accurate. I have a really good sense of humor most of the time, so instead I use that to try and educate. I hope the boy handles it the same way.
- “Pardon My Proprioception, As Soon As I Locate Myself I’ll Work On That!” —Poor proprioception is a really common theme among those on the autism spectrum. In big doctor words — from Latin, proprius meaning “one’s own”, “individual” and perception, it is the sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement. In Momma words — feeling disconnected from self, hard to locate self within your environment and difficulty managing self/parts of self. So when a child on the autism spectrum participates in what we call “stimming” or “stims” this means he coping with that proprioceptive imbalance or locating himself within his environment. Which brings me to my next shirt…
- “Self Stimulation: It’s Not a Private Act” — I know, I know … the 12-year-old brat inside my head lets a badly timed giggle fly every time I hear “self stimulation,” too. It’s cool. But self stimulation is a highly misunderstood and helpful coping mechanism for those on the autism spectrum. Stimming or Stims is short hand for self stimulation. Hand flapping, rocking, spinning, repetitive use of words or phrases are some of the many stereotypical behaviors. To reiterate what I shared above, this is a coping mechanism and it should be respected. I’m sure that most people have stims of their very own that they aren’t even aware of: pacing while on the phone, cracking your knuckles, biting your nails, tapping your foot or even flipping the pages in a book while waiting for something are all socially acceptable stims. Respect the self stimulation — It’s not just for private anymore *wink, wink*
- “Tourette Syndrome Tics Me Off” — Probably one of the most adorable tics the boy has is this little bunny rabbit nose scrunch. It kills me every single time. Are they all so cute and special? No. Some are so overpowering and intense that they scare the boy and me. Some are annoying and distracting to everyone, including the boy. Some are subtle and go unnoticed. The boy’s current teacher is one of many who have asked, “How do you separate bad behaviors from tics?” The simple answer is I just don’t try anymore. One lesson I have learned along the way is that all behavior is communication. No matter what the behavior is, it is the boy’s way of telling me something. When I remember this lesson things tend to run smoothly, when I forget the lesson things tend to fall apart. I forget more than I remember, but we are working on it.