Mother Shares How She Brought Up Her Autistic Daughter.
Story by Lisa Peña
When she was born she breathed loudly like an old man with a light snore, 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… so cute.
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… so cute.
When she was 3 she started having problems with sleep and would wake up at all hours of the night and stumble in the dark with her rolling curls and sleepy eyes… so cute.
When she was 4 she started to become impulsive particularly when eating, stuffing food in her mouth quickly, messily which meant food would usually end up in her hair and eyebrows and hands and thighs, gosh… so cute.
When she was 5 she began biting her nails, and chewing her hair, and nibbling on things that should not be nibbled on, regardless… so cute.
When she was 6 she was diagnosed with autism and although everyone agreed, 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, but her momma didn’t share that with anyone, so in public, at parties, with family and friends, because they didn’t see any of that themselves she was… so cute.
When she was 8 she began disrobing when she was anxious or overwhelmed, but her momma didn’t share that with anyone, so in public, at parties, with family and friends, because they didn’t see any of that themselves 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 different, awkward but… so cute.
When she was 10 she went back to public school and despite the fact that she can not read or write, some would see her broken, scribbled tracing on preK level homework and think… awww… so cute.
Now she is 11.
Her body is changing.
She is over 5 ft 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 delay 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 and grouchy and annoyed and 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 others’.
Being “cute” has gone hand in hand with tolerance. Not my tolerance, but others’.
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 others opinions” and “other people’s opinions are none of your business”, but what if the opinions of others 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 that 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… 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 beauty that is 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 that 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 and 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 that 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 and 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 beauty in the preserved innocence and beauty in those that 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 has literally forced my predetermined, preprogrammed mind to redefine all that I know to be beautiful and 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 and zoomed in and come into focus.
So the next time you see someone in public who by your determination is vulnerable in anyway, 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 that 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.
Dr. Lisa Peña is the founder and president of the non-profit The M.o.C.h.A.(TM) Tribe which stands for (M)oms (o)f (C)hildren that (h)ave (A)utism. She is the author behind The M.o.C.h.A. Tribe Diaries which is a website/blog devoted to squashing the idea that autism has a single story and author of a newly published book, “Waiting for the Light Bulb” available on Amazon. Dr. Peña is also the director of an annual wellness retreat for mothers with special needs children called The Ultimate M.o.C.h.A. Session. She is a rookie author but a professional mother of a child with an incredibly unique subset of autism called, pathological demand avoidance (PDA). Dr. Peña is a proud coach’s wife, a clinical pharmacist, passionate public speaker and a busy mom of three who happily resides in South Padre Island, TX.