“When she was born, she breathed loudly like an old man with a light snore. It was weird but so cute.
When she was 1, she didn’t walk. Instead, she clapped and begged to be held by wiggling her chubby fingers in the air.
When she was 2, she didn’t talk. Instead, she said one word, ‘Hi,’ over and over and over and over. I was worried, but most agreed it was so cute.
When she was 3, she started having problems with sleep. She would wake up at all hours of the night and stumble in the dark with her rolling curls and sleepy eyes.
When she was 4, she started to become impulsive, particularly when eating. She would stuff food in her mouth quickly and messily, which meant food would usually end up in her hair, eyebrows, hands, and thighs. Gosh, it was so cute.
When she was 5, she began biting her nails, chewing her hair, and nibbling on things that should not be nibbled on. Regardless, she was so cute.
When she was 6, she was diagnosed with autism. Although everyone agreed, she was still so cute, now that sentiment was followed by a smile of pity with, ‘What a shame,’ written all over their faces.
When she was 7, she began urinating on herself as an escape mechanism from learning activities. Her momma didn’t share that with anyone. In public, at parties, with family and friends, they didn’t see any of that themselves because she was so cute.
When she was 8, she began disrobing when she was anxious or overwhelmed. Her momma didn’t share that with anyone. In public, at parties, with family and friends, they didn’t see any of that themselves because she was so cute.
When she was 9, she started to enjoy dancing, but the uninhibited I-don’t-give-a-crap-who-is-watching kind of dancing. Her body moved differently, awkward but so cute.
When she was 10, she went back to public school. Despite the fact she cannot read or write, some would see her broken, scribbled tracing on Pre-K level homework and think, ‘Awww, so cute.’
Now she is 11.
Her body is changing.
She is over 5 feet tall and wears my size shoe.
She has body odor.
She sits with her legs wide open, regardless of how she is dressed.
She picks her nose with no regard to onlookers.
She undresses with no consideration of her audience.
She has speech delays and drools when she is tired or when she attempts to pronounce a difficult word.
She has accidents weekly because she gets so distracted or forgets to go to the bathroom.
She is goofy and awkward.
She laughs with her mouth wide open and usually full of food.
She eats with both hands as if she is in a race against time, with the remnants usually falling all over her clothes and chair.
Over the past few months, I’ve wrestled with this. This idea that we have passed the point of cuteness. We have officially crossed over.
I found myself moody, grouchy, and annoyed. I couldn’t tell where that negativity was stemming from, but I think I figured it out now.
For the entirety of my daughter’s life, being ‘cute’ has gone hand in hand with acceptance. Not my acceptance, but other peoples’.
Being ‘cute’ has gone hand in hand with tolerance. Not my tolerance, but other peoples’.
Oddness can be so easily masked with aesthetic appeal.
But what now?
What happens to my girl when society realizes it’s not cute anymore?
The self-help gurus say, ‘Don’t worry about the opinions of others.’ But what if their opinions about my most vulnerable child actually determine the way she is treated? Whether she is respected or not? How she is cared for? How she is spoken to?
Never in my life has the phrase ‘beauty is in the eye of the beholder’ been so painfully true. It makes me wince when I read or hear it.
That’s a nice sentiment when the beholder is the momma but what happens when it’s not?
All over again.
One minute, I can rationalize it all in my head and find peace. The autism, the delays, her terrifying vulnerability, the foreverness, the constant nagging of the unknown future before us. All of it. Peace.
But the next minute, my mind is sent reeling.
I’m worried for her.
How do I make people see the beauty I see?
How many blog entries do I write?
How many stories do I tell?
How many trainings do we need?
This is where the negativity I was feeling was stemming from — the crazy, heavy weight of something being too big, too hard, and impossible for me to change or control.
As the gap widens between the rate at which her mind is developing and the rate at which her body is developing, I’m struggling to reach a new level of acceptance. I’m struggling to rediscover peace with it all.
But this is not just about my girl. This is about something way bigger. It’s a social awareness that needs to come to the forefront. It’s about a social movement that needs to catch fire.
Because guess what? All of the special needs children you know right now will be teenagers and adults one day. They, too, will cross the cuteness threshold.
I can’t control what society defines as ‘cute’ but I can try to change the perspective of the beholders. I can try to switch out the lens of their life’s camera.
We can behold a messy, compulsive eater and see the beauty in a healthy appetite, which some mommas desperately pray for.
We can behold the oral fixation as a sensory mechanism to cope with stress and see beauty in those who try to make her feel safe.
We can behold awkward public dancing and see the beauty in living a non-filtered, completely free life.
We can behold the weight gain, body odor, and oily t-zone and see the beauty in puberty that makes her fit so perfectly in nature’s plan.
We can behold the homework that resembles preschool-level at best and see the beauty in the effort.
We can behold a teenager who wears mismatched clothes and shoes on the wrong feet and see the beauty in a young woman who could give a flying flip about what she looks like. She will still say hi to you, hug you, and help you, just say the word.
We can behold a human being with the mind of a child and the body of a woman and see the beauty in the preserved innocence of those who fiercely protect her.
If society engineers us to be more tolerant and accepting of that which is aesthetically pleasing — and if beauty is, in fact, in the eye of the beholder — let’s redefine beauty.
Isla’s life and spirit have literally forced my predetermined, preprogrammed mind to redefine all I know to be beautiful. Simultaneously, I’m learning to cope with the ramifications when society does not agree. This is hard and uncomfortable work for me but I’m gonna lean in until my lens has changed, zoomed in, and come into focus.
The next time you see someone in public who by your determination is vulnerable in any way — it could be someone with an obvious and serious disability or maybe it’s as subtle as a teenager or adult with mannerisms not quite matching up to the age their body suggests — my greatest dream is your heart and mind immediately are drawn to protect them, not avoid them. Respect them, not judge them. Assure that while they are in your view, people are kind to them.
What will you choose to behold?
Man, I hope you don’t miss out on the beauty.”
This story was submitted to Love What Matters by Dr. Lisa Peña of South Padre Island, Texas. You can follow her family’s journey on Instagram or Twitter. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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