“I can’t believe that almost 30,000 people just read the words ‘Tuberous Sclerosis’! You are spreading awareness! Thank you so much!”
This was the first direct message that was sent to me relating my son’s new diagnosis. My social media audience was on the larger side due to several years of blogging and speaking at local blog conferences. When my son was diagnosed, I knew that I wanted to share his diagnosis with the world, but I wasn’t quite sure what to share since I felt that he also deserved some privacy. To this day, almost four years after writing that announcement post, I still haven’t shared every detail about what he battles on a daily basis.
After my first speaking engagement, someone came to me and said, “I am so glad that you are using your platform for good! You are making a difference.” Those words shot straight to my heart, and I took them seriously every time I sat down to my keyboard. Having a larger presence online really doesn’t matter; we all have the ability to use our online presence to be a light for others, and I really want to encourage you to use your social media as a positive influence. Forget about your numbers or who you are speaking to; even if your mom is your only Facebook friend, you have the option to speak openly about your child’s diagnosis, and you have the ability to encourage inclusiveness, kindness, and awareness every time you go to post.
As a special needs parent, or as a parent with a child with a chronic illness, think of what you would want to tell the world if someone handed you a microphone and said, “Everyone in the world is about to hear your voice.” What do you want to share about your child? What do you wish people knew about the heartache you face, about what your child endures on a daily basis, or even what you wish people wouldn’t say in your presence? Tell them. Use your online voice to change the world, and I mean that whole-heartedly. If every special needs parent took to their social media to bring light to what they face regularly, awareness would spread like wildflowers.
Share. Plant the seeds and casually mention your child’s diagnosis. Share again. Your continuous words would be like the root; strengthening the concept that discussing big heavy topics like yours is normal and okay. The more you share, the more you will bloom.
I was recently at my older son’s soccer game, and a little girl came up to where we were sitting and started a conversation with me:
Girl: “Hi I’m Ava. I’m four. This is my pink uniform and I like it. What is his name?”
Me: “Hi! This is Rocky.”
Ava: “Hi Rocky! Can I play with your toy?”
Me: “Rocky can’t talk yet, but you’re welcome to share his toys with him.”
Ava: “That’s okay, Rocky. I will just talk to you instead.
We are going to play with your toys together! *pause* Why is him staring at me?”
Me: “He likes to look at things for a long time.
It helps him learn about what he’s looking at.”
Ava: “Oh good! I hope him likes my uniform too! Rocky, isn’t it pretty?
Here, hold this toy. Good job! We are playing now!”
I shared the exact conversation above on my social media with the caption, “I wish Ava could travel the world with Rocky and me and teach adults how to act around people with special needs. Innocence is amazing.”
The number of people who replied was overwhelming. I contacted Ava’s parents and thanked them for raising a kind child who was brave enough to ask questions and obviously taught to be gentle and kind to those who may not be just like her. They responded and said that they were proud of her and thanked me for sharing her words with the world. Literally, thousands of people read that little conversation, and I received nearly one-hundred messages from people saying that they didn’t know that it was okay to ask questions about anything when they see a special needs person in public. I encouraged every one of them to look directly into the eyes of the person with special needs and smile. I told them to say hello and not expect a reply; a simple, “Hello! I hope you’re having a wonderful day!” can really change the world; or in the least, change the mood of the caregiver.
If you have social media, I urge you to use the platform you have and spread awareness. Share until everyone who comes in contact with you knows that you are the person to go to when someone has a question about the specific diagnosis that impacts your life. Be the voice the diagnosis that changed your world. Speak up and stand tall. Encourage questions. Plant those seeds, and watch your wildflowers bloom.
MEET OUR COLUMNIST, GRACE
Grace’s unique journey has inspired her to speak from the heart, sharing her struggles and strengths. She is a domestic violence survivor and single mom of four, her youngest living with Tuberous Sclerosis. Despite these hardships, Grace always manages to find positivity and humor in life’s everyday challenges. When she’s not writing engaging and oh-so-relatable columns for The UpBeat, you can find her snuggling with her babies or constructing something fabulous with either a sewing machine or massive amounts of dough and a pie pan.
