Editor’s Note- Although I have not yet actually met Molly, I am blown away by her passion, her heart and her community outreach. Read her story here and learn more about her project at the bottom of this piece.
Life with Jacob
June 30, 2016. My world STOPPED! How can this be happening? My son, my sweet son Jacob, at the early age of 16 months, was positively diagnosed with Autism Spectrum Disorder. The tears swelled and stung my cheeks as they fell, while I sat in a cold and sterile office on a hard plastic chair. It was another very ugly cry in an unforgiving room. I looked at the nurse for what seemed an eternity. In my mind, the diagnosis replayed over and over again. What does having Autism Spectrum Disorder mean? What resources are out there? Is there a cure? How would I tell people? Questions saturated my mind one after another. I did manage to ask the nurse who talked to us once the specialist left, “how did we get in so fast? Were the first on the waiting list?” She replied, not even close, I looked through the list and your name stood out, and something in me said to call you and bring you in.” On this day, my whole life changed and a new focus began. Good comes out of every situation. A new life awaited me, but I wasn’t aware yet. Growing up, my very wise father would point out to me that in every situation; there was always a positive. The analogy I use is when a forest fire ravishes an area and everything is burnt to a crisp, it is in this very soil where the most fierce and abundance of life shoots up and grows forth.
The Words We Use
One of the greatest lessons I have learned is this: How we talk about our children makes a huge difference in how they feel about themselves and how others view them. The best example of this comes from the movie “Finding Nemo.” Many of us here have seen the movie so many times we have practically memorized it. But think back to the first few minutes of the story. Little Nemo is old enough to start his first day of school. Nemo’s dad Marlin meets the teacher (Mr. Ray) and introduces Nemo by describing all the things his son CANNOT do. “He has a weak fin so he needs to take breaks and catch up.” Remember this? Before the others even get to know little Nemo, they are forming an opinion about him.
To bring this concept back “on land,” let’s learn about two boys.
The first is a two-year-old happy kid. He enjoys playing with his sisters, laughing, eating Graham crackers, swinging on a swing, exploring his surroundings, and being with people. What image does that conjure up in your mind?
The second boy is also two. He screams in frustration because he has trouble communicating. He goes through intense therapy every week. He just learned to walk at age two and wears leg braces. He doesn’t speak much and still signs many things with his hands. He won’t let you know his diaper is full, but when it is full, the sensation bothers him so much that sometimes he’ll rip his own diaper off and make a huge mess.
Which child can you relate to? Which would you prefer to meet? Which would you prefer to babysit? Or teach in your classroom? The obvious answer is the first description. However, they describe the same exact child, my son Jacob.
Here’s how we can blend these descriptions to highlight the PERSON that Jacob is, while still bringing up the important notes that babysitters or teachers need to know:
Jacob is a delightfully happy child. He loves eating Graham crackers, but you’ll definitely hear about it if he’s hungry. He is curious and loves to explore, so you’ll need to lock your chemical cleaners away. He likes to sing and make sounds so you can encourage him to communicate by paying attention and validating that he’s trying to say something. He would love to play in the playground with the others, but even better than that would be to let him swing on the swing set, because you’ll see pure joy on his face. When you change the other children’s diapers, you should check Jacob’s too, because he may not let you know that his is messy, but you’ll definitely know when it’s too late.
So you can see that it matters very much how we talk about our children. When we focus on what people can do, we raise the level of expectations. When we highlight the disabilities, we set expectations. Our children, whether typical or disabled, whether they need glasses or regular insulin, whether they have dyslexia or cannot speak, are still CHILDREN. They have names, they like to sing songs, they like playing, they want acceptance. Maybe they have to do things differently to achieve the same outcome as typical kids, but they are PEOPLE first.
I believe we can make a better world for our children. I know we can do so much more than what we currently have to offer them. It starts with you, it starts with me, it starts embracing and learning about those who are different than ourselves. It starts with reaching out and asking questions. Let’s learn to see what is past the surface of others. Let’s learn to start conversations and ask questions when someone is different instead of rushing past them. Pull that invisible elephant right out of the corner of the room and address it straight on. Lets talk. Let’s start dialogue. Let’s educate one another. Education and love are the keys for a better and more inclusive world. The bottom line is, we are all humans having a human experience. And each of us deserves to have this gift of life in the most humane and positive experience possible.
Molly McMunn Korte is a mom of three beautiful children and wife of a world-renowned Lego artist (Brickworkz.com) She took a call to social activism for special needs individuals after her son Jacob was diagnosed with Autism Spectrum Disorder in the summer of 2016. She founded Project: Just Like You as a way to show how those with special needs are just like their peers. Today, she writes, speaks, and podcasts as a way to get people talking and take away the stigmas that surround the special needs community. Learn more at www.projectjustlikeyou.com. You can find them on Facebook too.