I’ve been bracing myself for this since Gia was born. The n-word brings tears to this mom’s eyes, sadness to my heart, and a kick to my stomach. However, it’s actually a word I hope that Gia may one day sing from mountain-tops.
My n-word is non-verbal.
Ironically, just a few days after I wrote about my feeling on labeling a child, arriving in the mail was a label I knew would eventually be coming. The n-word blinked like a flashing red beacon in the opening sentence of recent office visit summary, reminding me of choppy and unpredictable waters ahead. The first sentence of the letter was: “Gia is a 2 year old, 3 month old girl with 9q+ syndrome, developmental delays, and bilateral hearing loss…..who is non-verbal and has very limited sign language communication…”
I’ve been aware of Gia’s possible speech issues early on. Speech delays are common in kids who are hearing impaired and having a chromosomal abnormality doesn’t help much either. Of course neither did being a non-oral eater for 19 months. Gia never made the normal baby coos and sounds, and at two years old I’ve only heard her vocalize very limited random sounds (da-da, za-za, na-na, and a few others). So, I’ve been wondering when this new label would appear and it isn’t a surprise. I just don’t really want to see it.
I find that in raising a child with special needs there is a very fine line between hope and denial. Denial is acting like it isn’t a big deal. Denial is assuming “she’ll get there eventually just let her [insert “helpful” advice here]“. Denial is thinking everything is OK because Einstein did not talk until he was four (which, by the way, is an urban myth; he was speaking in whole sentences between two and three). Gia just isn’t your typical two year old, she is genetically different. I don’t have a road map to follow, I don’t know what is ahead, and nobody does. So no, I’m not in denial, I am fully aware of our situation. I’m doing what I can to move her speech and language (including American Sign Language) forward because more than anything I want to communicate with my daughter. And the reality is that Gia needs help.
But I am hopeful. When I am asked about her speech I simply say we aren’t there YET. Gia and I spend at least four hours a week with speech and language pathologists. I spend countless hours researching and thinking about communication. Her sister and dad also work with her at home. We spend every waking hour integrating and sometimes exaggerating sounds and signing into our daily lives. I have hope because we work hard to help her.
Quite thankfully, I’m starting to see a payoff. She is signing a few signs consistently and even repeating a few different sounds. And just last night while laying in bed, she practiced her first real word…”UUUPPPP, UUUPP, UUPP….UP”! This morning she even repeated “up” again at speech therapy when we were playing with balloons!
We have a long, long, road to go with much hard work ahead. She still might be labeled with the n-word along the way. She might never verbally tell me she loves me or even say “mommy.” Then again, she might very well surprise us all and become an opera singer. It’s all a guess. However, I do know we are headed UUUPPPP, UUUPP, UUPP, UP and it sounds so nice.
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