What They Don’t See

IMG_5665

They don’t see how much you are struggling just to enter a room full of people. 

They don’t see your mom cringing and scanning the room immediately for triggers or danger. 

They don’t see how bright the lights are or how loud the conversations can be to your beautiful brain. 

They don’t understand why you cover your ears, bite your shirt, or self injure because the anxiety is too much to handle and your meltdown is not a typical toddler meltdown and you don’t know how to self soothe. 

They don’t understand overstimulation from a seamlessly normal day for your typical twin brother. 

They don’t see the compassion, patience and love you are teaching your brother at a mere 4 years old; more than most adults. 

They don’t see how just turning one wrong direction walking or in the car causes a complete anxiety ridden meltdown that can last up to an hour. 

They don’t see the 40 hours a week of therapy you tackle at just 4.5 years old like an adult just to work on all of those challenges. 

They don’t see the 10 hours of being in a car driving from different therapies and home every week. 

They don’t see how hard you have worked to have “calm body” and “holding hands” “first this then this”. 

They don’t understand your desire to wander and run away without any knowledge of danger. 

They don’t understand why you don’t answer or say thank you at almost five because you are nonverbal(zero words). 

They don’t see the eight long hours you work everyday just to make simple sounds or trying to learn basic sign language. 

They don’t see that you didn’t sleep more than four hours because your brain sometimes can not shut off. 

They don’t see how just smells of food makes you gag/puke because of sensory processing disorder. 

They don’t see how much food therapy and food play you do everyday to tackle just being able to be around food or touch it. 

They don’t see how far you have come since last year working on waiting and responding just to your name. 

They don’t see how far you have come in two years with one step commands being taught all day over and over until you “master” each one. 
They don’t understand that you look 5 but your brain is still 12-18 months old. 

They don’t see how much you love to snuggle and how sweet you actually are in the few moments when you are aggressive from sensory overload. 

They don’t understand why you might climb into someone’s lap and rub their face for sensory input. 

They don’t understand why you love crayons so much but you don’t want to color you just want to peel them. 

They don’t understand PICA or why you are still in diapers or poop smearing. 

There are many things you may not see looking at my beautiful precious Curtis. It’s the way I cut his hair. But and it’s a huge one although it seems so simple to me. The easiest thing to see and understand is to always just be KIND. 

My precious child and thousands of other kiddos and parents are putting in so much hard work and regardless if they aren’t. You can’t judge someone’s struggles by the way they look.

Yes, there are adorable cute kids with severe non verbal Autism (gasp)! I know it’s weird but I happen to be a mother of one.

Please just be KIND.

Please just understand some disabilities are only on the inside. They may not be able to talk to you but they can still hear you and see you. And they are working so hard on what you may see in that “moment of overcoming challenges”. 

Written by, Rachel Spurling

I’m a mom of 4.5 yr old twins. One typical and the other has severe nonverbal Autism. He was diagnosed at 20 months old. We are an active duty Marine Corps family.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

Avatar photo

Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

Share this post: