“To shine your brightest light is to be who you truly are." Roy T. Bennett
Dear Addie,
Most of our world caters to conforming to a ”normal” standard - to be, or act a certain way. But what if you don't fit into that mold? What then? Are we to sacrifice who we were intended to be to ”fit in?” Autism has taught us much about not “fitting in”, but better yet, paving a path navigating a world that doesn't seem to be designed for you or others on the spectrum.
While we are busy laying bricks for your journey, there was also another journey happening in our very own house! It begs the question, ”what happens when these journeys collide?”
Allow me to explain...
Years ago when we were navigating (at the time) what seemed like some of our toughest chapters in parenting, you know the “here's a binder to try to parent your autistic child (you) - good luck!” At the same time, your big sister Clara was also navigating unfamiliar territory for her (and us). She had some specific challenges that included something called Tourettes. These things are just part of who she is, and just like all things “Clara”, they are unique and lovable, and help make her who she is.
If I back up a bit, we had moved from state to state a few times when she was little, but she never let on that always being ”the new kid” was ever stressful To her. She was pretty much a pro at it! A beaming light that so many gravitated to. Not a mean bone in her body, and a wickedly quick and innocent sense of humor. She had no problem finding friends.
As the years went on, the struggles began to build in school, and our relentless questions of her being behind academically (and not being able to read at the proficiency or speed as her peers) was always given the same response - ”it’s just her age.”
We didn't know where to turn. That was until a very special teacher went out on a limb to give us her thoughts on it not just “being her age“ or her not just being “a dreamer” during a parent teacher conference.
All we knew was that something was amiss and we needed to find a path to help her, and this teacher was giving us a some direction. You know who you are & we can’t thank you enough :).
It's funny when you dive into a new journey, and look back - sometimes the pieces of the puzzle all come together. You find yourself saying ”why didn't we see this before?” (insert parental guilt). We were now determined more than ever to help her in anyway we could with whatever we needed to do - holistic, medication, therapy, tutoring, a beagle (hmmm, so THAT’s how he snuck in...). We were all in.
Here's the thing, you should always encourage your kids to be exactly who they are meant to be. But kids can also be cruel, and when “who you are” is someone who has a vocal tic (that is noticeable/audible), it's kinda hard to just be you. When she was tired, anxious, or stressed - her tic got faster, more frequent, and louder. If people pointed it out or angrily asked her to stop because the sound bothered them, it was like gasoline on a fire... aint no slowing that thing down... burn baby burn. Actually it usually would get even worse!
It bothered her, and her inner light began to get dimmer and dimmer...
Another move and another new school (but one she’d been to before), the continuing of experimenting with different medications - some literally so calming they made her fall asleep in class. The hits just kept on coming, and she was further and further away from blending in. After her 4th school, and 5 years of this official diagnosis, we took a huge leap of faith and changed to yet another school.
It was here that she found her differences were celebrated as just being who she was intended to be. In addition to opportunities to showcase her amazing artistic talents while getting her education - this just seemed like a perfect fit for this stage in her own personal journey. She was happy.
Her light was back and shining brighter than ever!
She slowly gained her confidence back, and after an episode of America’s Got Talent that showcased a comedian with Tourettes (true story), she decided she didn't like the way her medication made her feel anymore, and asked if she could stop taking it. Yes, the tics would come back, but she decided that she was ready to truly embrace all of who she was. If I'm being honest I was SO proud of her, but also a little scared. Scared of what, I really don't know. Yet another new path? Perhaps.
Like Dr. Seuss once said ”why blend in when you were born to stand out?”.
Her light was back, her acceptance and confidence beaming bright, but to you, Addie, the sound of her audible vocal tic was maddening.
Journeys collide.
Why though? Why does this repetitive (ever so slight) sound of hers cause you such stress? You aren't angry because you hate your sister, that couldn't be farther from the truth!
You love to be around her, ask for tickles, to sing songs, get into all her things (not sure she loves that but...), you even ask for her help all the time. She's in every way the perfect big sister,
but then there's this one “tic” thing. It’s your hypersensitive hearing and that ever so faint hum she produces with her Tourettes that drives you crazy! To you it's like nails on a chalkboard!
You see Ad, certain sounds register on a specific level that cause so much discomfort for you, that it stimulates an anger/fear response - most often resulting in screaming and hitting as your outward display of displeasure. For you having a hypersensitive auditory system is really an umbrella term housing many other auditory issues. This display of your displeasure is actually known as misophonia (funny word right?!), or in other words a ”dislike of sounds.” I feel like I may have a misophonia to all things ASMR thanks to Clara and Gabe. It kinda makes me want to scream. Just kidding, but seriously why is that a thing with kids these days?!? Ugh!
But back to you, it’s when these sounds create anxiety before they even happen (often resulting in a ”fight or flight” response) that they take on a whole new name called “phonophobia.” Phonophobia is a far more challenging thing to cope with, and can take extensive therapy and often anxiety medication to find the slightest bit of relief. This phobia can often lead to extreme isolation because anxiety of the unknown can become very consuming. It's the same emotional reaction as misophonia but with the anxiety layered on top.
A good example, you don't like the sound of nose blowing. A simple sniff or sight of a tissue, napkin or paper towel stimulates anxiety that nose blowing could potentially follow, so you scream, hit, or run to get away from the potential nose blowing sound whenever a tissue is in sight. God bless anyone who might be in your path! This is phonophobia.
Lucky for all of us, when it comes to Clara’s tics, we are still in this misophonia phase (meaning it's only when she produces the sound that there is an issue, you don't run and hide when she walks into the room out of fear that it may happen.
This is when I remind myself - things could always be worse.
Unfortunately trying to discipline you on this has caused us great stress. Clara gets hit a lot (by you). She is also surprisingly the first to come to your defense that you’re just really upset, by the sound and always says ”it’s OK.”
We recognize this causes you pain and distress, but this is NOT OK! We get it, our solution of - put these giant noise-cancelling headphones on as the answer doesn't seem to work for you. But while Clara is coming into being comfortable with her differences, asking her to change and/or just accept the hitting from your distress, well that's not exactly fair either.
Now what?!
We have now entered the chapter we officially call “referee parenting” (and brothering... Gabe does his fair share too).
Coping tactics, medication, therapy, headphones, charts, signs, oh that damn ”exposure is key” advice, we keep visiting the same chapter for different reasons, but the consistent piece unfortunately is you keep getting bigger, stronger and louder.
This week we are about to embark on yet another new therapy in hopes to help us coexist better and maybe bring us out of this referee game. Zebra stripes aren't really my jam Ad.
I know that we can find peace in all this because just ”fitting in” and not embracing our unique differences would make this world a pretty boring place to be. May we all follow your sisters courageous lead of love and light.
We won't give up.
Love,
Mom
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