Dear Addie,
You woke up, staggered your barely awake self down the hallway – blanket dragging along behind you. You proceeded to crawl into bed with daddy and me. We had the tv on and were catching up on the morning news. Out of the blue, you broke our collective silence with a new phase - "headphone picture?”
“headphone picture?” Dad and I looked at each other perplexed in part because headphones are definitely NOT usually your jam, and why "picture"? What the heck did that mean? You continued repeating your new phrase and eventually returned to your room seemingly defeated that we didn’t understand your newfound request.
A short while later you resurfaced from your room once again with the same request “headphone picture?” “headphone picture?” You were determined we would get this. Such confidence you have in us ad! Never a dull moment of just resting our brains around here!
Using our super sleuth parenting skills, I started backtracking thinking where you would’ve used headphones. We knew one thing for certain, it wasn’t at home that’s for sure, so I started thinking of school. Then it dawned on me, over the holiday we had attended a small gathering in your class where you became overwhelmed and resorted to the quiet cool down corner in the classroom. Here you have access to an iPad, but you must use it with headphones. You slipped them on very second nature and began navigating through your word games. Side note: I remember seeing this in real time and thinking are you kidding me?! We have tried headphones on and off over the last year with no luck. We even tried sound integration therapy with little to no success, not for lack of trying!
So now having remembered this headphone memory, I thought maybe this was your way of asking for the iPad? You went through a phase of liking it at home, but it had been some time since you’d asked for or used it at home and certainly never with headphones!
A shot in the dark I grabbed some of daddy’s fancy noise canceling headphones he uses for traveling, and the iPad, and guess what? I’ll be darned if you didn’t just nestle yourself up in the living room recliner, slipping the headphones on and playing preschool matching games. Mark it another mommy moment where my mouth hit the floor.
You might be wondering why this was such a big deal? Well, allow me to explain…
You see Addie, you my dear have a hypersensitivity auditory processing disorder. Say that five times fast, right? It’s really just a fancy way of saying you can’t filter sound very well, so you hear everything all at once. This can lead to extreme distress and anxiety for you which often results in those dreaded fight or flight reactions.
To add another layer of complexity for us, some people may or may not know that your older sister Clara has Tourette’s Syndrome which causes her to make involuntary sounds that ebb and flow with different factors. These sounds make you literally scream and sometimes hit whomever is closest out of displeasure it causes your auditory system.
It seems as if it would be an easy solution, headphones, right?! Well, we are living through this and I can promise you that’s easier said than done. If I’m being honest, a lot of the advice is easier said than done, but it is what it is.
I used to think you fought us on wearing headphones so much due to the feeling of having your head touched, and perhaps that still may be part of it, but not being a doctor and just your mother who happens to observe you, I have a different theory…
Is it possible that the fear of having your head touched was associated with the touch causing a distressing sound to you? Only just recently have we been able to wash or brush your hair without a full-blown meltdown, or WWF match. That got me thinking.
A lot of autistic people have an aversion to touch. It doesn’t always mean they don’t like to be touched (in fact most often they prefer deep pressure touch), but I believe your head touching has more to do with sound than touch. You see Addie if I touch my head whether it be brushing, scratching, washing, or just running my fingers through it… I hear a sound that is significantly louder than that if I scratched my arm let's say.
I might not always notice the sound of scratching my head, unless I’m in an environment where I might be more isolated from external sounds (like a bathroom or my bedroom), then it would remain somewhat white noise, and my focus would remain on the sights or sounds around me.
Only when isolated do I tend to notice the sound at all. For you, all sounds are all full volume all the time. But again, the idea of your head being touched, involves an anxiety of additional sound and it’s even louder at that! Headphones become a battle of good and evil something potentially super loud initially could help create some calming silence in your brash world.
I get it, the lack of focus of too many sounds isn't hard for me to imagine. When all three of you are trying to get my attention at once, you - relying on my super sleuth abilities through repetitive echolalia on what you need, Gabe -asking what’s for dinner and giving detailed suggestions, and Clara asking for help on her homework. All at a volume continually climbing above one another – I have to say STOP! One at a time please! I literally can’t focus on everyone’s needs at once.
Then I think... this is your life. Everyday. Focusing is challenging with every sound coming at you!
Noise cancelling headphones don’t take away all sounds, they basically take away the white noise, high pitched or low vibrations in sounds you are filtering through. It gives you the ability to focus on speech or people who are talking to you. They provide you less sounds, meaning less filtering work. You can still hear my voice ask you to do things, but you aren’t aggravated because you’re hearing 8 other conversations, the dog breathing, the heat blowing through the vents, and even the writing of the lead against the paper from homework being done. It’s just my voice. Calm and focused.
So, going back to the “headphone picture?” situation. We gave you the iPad that morning, and when you were through you set everything on the coffee table and happily went on to play. Still in awe of this recent development, we had to run some errands taking another shot, we asked before leaving if you’d like headphones to go bye bye’s? Sure enough you leaned your head forward and said “headphone picture?” There was no fight, just very matter of fact you slipped them on like you’d been wearing them for years, and this all stemmed from you wanting to play the ipad that morning. Something clicked and you realized they weren’t scary anymore, but helpful.
In my super sleuthing, I realized that at school, you need headphones to play iPad. So you now have an associated behavior – school/headphones/iPad, so that’s why you asked for them. It’s there that your “cool down corner” involves an iPad, while at home ours involves the outdoors and a swing set. That’s in turn why we didn’t know of your new found headphone wearing abilities. Like I said before we had no (or very minimal) luck with them in therapy or at home. Whatever the reason, you decided school was where you would wear those once dreaded headphones and not anywhere else. I guess I’ll never really know the answer to why that is. Perhaps it’s because you don’t use an ipad at home because you have other “cool down” outlets and can freely go outside so the association isn’t there. I’m sure one day you’ll tell me why this is.
So, dare I say this past week was a new chapter for us? It’s a little early to know for sure, but we made it through stores, sitting in the car not being aggravated by sister’s tics, church, and out to eat without any major meltdowns…all while wearing headphones. We witnessed first hand you feeling relaxed and actually happy in settings that would’ve potentially otherwise thrown you into a downward spiral of distress.
I think sometimes we must face our fears on our own timeline, and you woke up ready to do just that, while graciously taking the reward of some calm in your life. Excellent job.
I’m VERY proud of you Ad. Perhaps an airplane trip will be in the near future?!
Baby steps, baby steps.
I love you.
Love,
mom
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