It’s beautiful how God can take an ugly experience and turn it into something meaningful. This blog is the result of one dirty look.
I’m Annie! I don’t have an Ivy League Degree. In fact, this morning I spent a solid 10 minutes searching for my phone, which I discovered in my hand. But there is one area of my life where I excel, and that’s loving my son, Henry. That’s where I shine! Henry, my son, has multiple diagnoses including severe nonverbal autism and intractable epilepsy.
Several months ago, we were in the waiting room of a doctor’s office. There was only one other woman in the waiting room, so I let Henry explore the area while holding my hand. I had music playing at a low volume for him. One of his favorite songs came on and he immediately began squealing and giggling. He was clapping and flapping his hands. Henry’s celebration was not at a low volume, so I glanced in the direction of the woman in the waiting room to explain that this was one of his favorite songs. She was staring at Henry with such disgust. It’s human nature to stare at someone who’s squealing in a quiet area. I would’ve stared too. We’re used to getting a lot of looks, but some stares are not kind. Some people stare because they’re curious about us, some pity us, some care for us, some can’t take their eyes off Henry’s joy, but there is the rare occasion when people look at us with disgust. This was one of those looks that was meant to let us know that our existence annoyed her.
If I was a cat, the claws would’ve come out. I still don’t understand how we could’ve been looking at the same child because there’s something incredibly heartwarming about witnessing Henry’s unadulterated, unapologetic joy! I was irritated so I behaved in the most “mature” way possible. I turned the volume of Henry’s music up, let go of his hand, let him dance around the waiting room, and watched him climb on the furniture. I decided not only was he allowed to take up space, but he could take up as much space as he wanted. I didn’t handle that situation well. The entire incident irked me for days. I was angered by the reality that there are people who genuinely dislike the special needs community. I wanted that to change. I wrestled with the thought that I’d missed an opportunity to be Henry’s advocate. If I had returned her glare with a smile, maybe we could have had a conversation about Henry. Would she have recognized his strength if she had heard his story? Would she have walked away with a heart that was a little softer towards the special needs community if I had introduced her to Henry? I decided it was my responsibility and privilege to be an advocate, but how? How was I going to advocate for my child when he needs 24-hour supervision and assistance with all his daily living activities?
I took baby steps. I made a couple of awkward videos about lessons Henry’s taught me and shared them on his Facebook page. For example, I shared ways that we communicate with Henry in our home. Another baby step was taking up space in our community every day. I believe the more visible Henry becomes in his community, the more likely it will be that people will embrace him. These felt like positive steps, but I felt convicted to do more. So, I’m creating this blog to share our story with as many people as possible. Sharing our story is an act of spreading awareness. My hope is that this awareness will turn into acceptance, even affection, for children like Henry. There’s a saying in the autistic community, “If you know one person with autism, you know one person with autism.” This is so very true, but I also believe you can fall in love with one child who has autism, and it can set your heart on fire for the entire special needs community. Will you please read about Henry and get to know him through my eyes?
Henry is the splitting image of his daddy, but he has my nose. He’s 6 years old with blond hair and blue eyes that are framed by impossibly long eyelashes. He has the cutest toothy grin. If Henry’s unhappy, everyone is unhappy. On the flip side, when he’s happy his joy is contagious. It's humanly impossible for me to hear his giggle without dissolving into giggles alongside him! Henry loves exploring, biking, riding in the car, and he would live in the swimming pool if we allowed it. His favorite food is cheese. I don’t know his favorite color, but he chooses red and orange items more than any other color. He reads Brown Bear repeatedly, and every read is as thrilling as the first read. The most important thing in the world, to Henry, is his music. (Not any music) He listens to Baby Einstein Classics and Little Baby Bum Nursery Rhymes at all times. At. All. Times.
Henry is medically fragile, but simultaneously the strongest human being I have ever encountered! He is the most effective teacher! Henry has taught me that I haven’t scratched the surface of what I still need to learn. I thought I understood what it meant to be selfless, but he’s required me to live the word “selfless.” He’s shown me what it means to love without condition. He’s stretched me, humbled me, and forced me to be brave. He’s taught me it takes strength to remain silent, that there’s power in our words, and that I need to be wise about choosing when to be silent-vs-when to speak out. And it’s time for me to speak, educate, and advocate on his behalf. So, here goes nothing sweet boy…