By: Melissa Archer/
Finding “Her” Voice
I find myself often searching for the answers to Jasmynn’s autism puzzle piece regarding language. For a girl who didn’t truly speak until about age 4 ½ and then one day clandestinely arranging the magnet ABC’s on the washer door and saying her alphabet she certainly has a unique take on words. With her initial diagnosis of autism, we were told “don’t mortgage the farm trying to find a fix” because there is none. We met with SLP’s and a whole slew of specialists from the LISD who didn’t need the medical diagnosis because they had seen many facets of kids just like Jasmynn before she arrived and was set to doing simple tasks: take the pill bottle lid off and place a tiny bead inside, put together a puzzle, stack blocks in the pattern set before her by an OT, or merely come when her name was called. They were all basic kid skills that we take for granted and don’t figure there’s a need to show how it’s done. But our lovely Jazz failed at each step.
She had virtually no words, just guttural sounds or squeals of delight that were oddly foreign coming from the mouth of a pre-school child. We learned new terms like: Aphasia, Apraxia, Receptive and Expressive language disorder, all of which she seemed to exhibit. She will forever have Apraxia where her letter “L” is concerned; no amount of speech tricks can solve that conundrum where “L” sounds like a “Y” every time. “The sun is yeyyow.” “YaYa is the yeyyow Teletubbie.” Her sentences tend to be clipped, and uniquely important to what she alone values; seldom pertaining to what those around her wish to converse about which leaves her so out-of-the-loop where her peers are that friendships are unheard of.
Because it is what she took a liking to early on, we live round-the-clock with Sesame Street, boys, soldier men, and music. Her speaking has gone from one word utterances (“Rambutan” a weird prickly island fruit rarely found in the produce section of our local stores but always at Whole Foods in Ann Arbor) to a combination of 2-3 word demands. “Want cookie.” “Go poop.” So that when she was a bit younger and let me tell you, nothing gets you moving out of a church pew quicker than a child shouting that out in the midst of prayer. We’ve progressed to “Use the restroom, please.”
And now to where we are today; She has memorized almost perfect, full-length sentences to use in the correct time and place. “I want buy a chocolate chip cookie at Starbucks, please.” Or in her telling of the furry red monster with a squawky girl voice, “Elmo has red fur. “ To which I have become conditioned to respond, “That’s right. And you have?” “White skin.” she’ll say. Yes, another speech term that has become a staple in our lexicon… that demanded response is known as perseveration. She can go for hours waiting for you to respond correctly and of course, silly me, there is only one “right response.” She has tricked each of her parapro’s since the beginning of kindergarten to “play the game that mom won’t play” and that is always responding with the phrase “REALLY FAST!” to her multitude of sharing about any and everything under the sun which moves at warp speed. “Train goes…?” “Elmo’s mouth moves..?” “Wheels on the Bus song goes…?” Woe be unto the poor soul who doesn’t know that the answer is and always will be “REALLY FAST!” and even then must be said with gusto.
She tends to prefer things insanely fast. Her staccato words are machine-gunned from her mouth so that we have been told by professionals, “She can talk. She just needs to slow down.” And how does one teach a child whose brain operates so quickly to overcome that need for speed? If you have an answer I know several moms who would willingly pay a large reward for that gift. Jazz can sing the entire 12 Days of Christmas, beginning to end, in about 3 minutes. And sing it she does pretty much year round. That’s just another thing that she truly loves, Santa Claus and candy canes and the melodies of Dec. 25.
Teachable moments or “ah-ha” revelations arrive at the hardest times when she is unable to voice what is making her world run amuck. Like this past Sunday, when I decided we would make a short trip to Lowe’s. At first she wanted to go, but quickly changed her mind as I parked the car. “Go home. Mom’s car.” She yelled between fits of giggling and hiding her eyes beneath cupped hands like a pair of binoculars. It is her form of tunnel vision when the world is just too much. Whether that be brightness or stimulation from the flickering fluorescent lights and array of ceiling fans that are mounted but immobile…when if you have a ceiling fan mounted, in her world, common sense says it MUST be moving.
Against my better judgment, figuring I could weather this battle, we entered the store. She pulled a cart out, shoved it at me, almost knocking me over. And I still didn’t understand what her actions were trying to relay. 3 feet inside the automatic doors, she began to shriek. She calls it “squawking” and I’ve seen a gaggle of teens duck in Walmart because they thought her noise was a wild bird swooping down from the ceiling. Nope. Just a girl, without the words to express her frustration, getting her needs met. So round the perimeter of Lowe’s we crept. She squealing with her hands over her ears, looking me straight in the eye as if to say, “What part of this do you not understand?” me politely saying, “Jazz, you need to use your inside voice.”
It was a quick shopping trip. It didn’t go as planned. I paid for our purchase and smiled wryly when the cashier asked, “How are you today?” We fled to the car like a serpent was on our heels. She fell apart in the backseat. “Don’t know how to behave. Screaming not a good choice. I’m so sorry.” which breaks my heart. She knew she didn’t handle the situation well, but she did the best she could. I should be the one apologizing for not reading her body language, her adamant refusal to want to enter the store. So we chalk that up to experience; albeit not the best one we’ve ever had. But there is always tomorrow and we will definitely return. Perhaps it will go a bit better or perhaps not. She and I have an understanding. Until she is truly able to express herself with words, whether that be via her “talker” or iPad which she is prolific at expounding upon (but not at telling you what you want to know), we will continue this unraveling dance of us against the world. She is not my most easily decipherable daughter, but I know that what she is keeping locked away, inside her amazing mind, will be earth shattering. She has much to say. It is my job to listen to her method of how she is able to say it as she finds her voice.
(Jazz is the inspiration behind the founding of Jasmynn’s Voice, a nonprofit organization which “gifts” iPads and often the communication app for those struggling with language delay due to ASD and living in 4 southern Michigan counties. ) www.jasmynnsvoice.org or visit us at her FaceBook page www.facebook.com/jasmynnsvoice
You can read Part One of Jazz finding her voice by clicking Here!
Melissa Archer is a retired English teacher, and mom to 5 girls (ages 40-16). Melissa worked at Lenawee P.R.E.P. for 7 years with the teen moms. She is now the President and co-founder of Jasmynn’s Voice, a 501c3 which has been gifting iPads/otterbox cases/ AAC apps to those struggling with language delays due to Autism since they began it in 2012.