Every Autism Mama
I’d like to take a moment, and introduce you to an autism mama.
You’ve seen her before, pushing a cart in the grocery store, or holding hands with a teenager in the parking lot.
She usually looks tired.
Maybe her mouth is pressed into a thin line, her skin a papery white.
This autism mama, she might come across as impatient, or abrupt at times. Try not to take it personally. She has formed a kind of shell, you see—a layer to protect herself against well-meaning comments about behavior and development and discipline and medication.
She is working so hard to advocate for her complicated child, while at the same time keep him safe from judgment, and discrimination.
She is hiding more than you know.
Behind tight smile and the tired eyes is heartache, and longing.
She longs for connection.
She longs to celebrate the basic milestones others take for granted—a full night’s sleep, a tentative first word, a bike ride through the neighborhood.
She is learning as she goes.
While you drive your kids to ballet or football, she takes hers to speech therapy, and counseling.
When you worry about grades and report cards and honor roll, she worries about executive functioning, and independent living, and medication for crushing anxiety.
She doesn’t want you to feel guilty about what you have, as opposed to what she doesn’t. She is happy for you, at the same time a little bit sad for herself. These are not competing emotions. Both can exist at the exact same time.
She thinks about her own mortality at least once a day. What will happen when she dies? Who will fill the prescriptions and wash the special blue blanket and make sure the IEP is signed?
So she wills herself to live a long, long life. Yet she forgoes self-care in the name of autism. There isn’t time for yoga or fitness or Keto meals plans or rest.
It is not the life she expected. Oh, no. She expected her life to look more like yours—sure, a few bumps in the road, some tantrums, the occasional sleepless night. But overall, she imagined a typical parenting experience with milestones and joy.
Instead of tantrums she manages full on meltdowns, when the lights are too bright and the music is too loud and the world is too much and the child—this precious, tender, hurting child—cannot handle it all.
Perhaps you’ve seen her, wrangling a screaming mass of limbs and fear in the mall, or trying to get a small child to sit for lunch in TGI Fridays.
Perhaps you shook your head and muttered about how bad kids are these days and no one knows how to discipline.
Please, don’t do that. Don’t shake your head, or mutter.
Just smile her way. That’s all. A kind smile could change everything. It could change her whole day. Instead of returning home cranky and tired, she would walk in in the door hopeful, and inspired.
All because of your smile.
He is not bad.
He is trying.
She is trying.
See her.
She just wants to be seen.
She has never been so alone.
She wishes you could know the good side of the spectrum. She wishes she could invite you into her house and see what it’s like when the screams have quieted and he stacks some blocks or organizes the DVD’s and stays busy long enough for her to throw meatloaf in the oven.
This is what progress looks like. A little quiet, a few blocks, and dinner around the table.
It isn’t much.
For her, however, it is everything. It is her joy.
Written by, Carrie Cariello
Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better, and Someone I’m With Has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children.
Carrie is a contributor to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk.
She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.
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