If you ask most of my friends what their first memories are, they might say something like…“first baby dolls” or “bike rides.” Mine all have one thing in common – a feeling of fear and being out of control.
One of my very first memories was standing in the nursery of a small church while my mom was in a Women’s Bible study. At nearly the same time every Wednesday, the caregivers would roll in a large TV. Every other preschooler was giddy with excitement over what was coming next. I, on the other hand, began to feel weak, my heart raced and pounded in my chest. I knew it was coming, and there was nowhere to go, there was nowhere to hide. I tried escaping to the hallway, but was too afraid to go very far because that too felt way out of control. Instead, I stood immobilized with fear bracing for the sounds and images that would come next….
And then there it was… “Veggie tayahals….Veggie tales…Broccoli…Celery….” These mutant vegetables were singing and laughing and everyone in the room was singing and laughing right along with them. I couldn’t bear it. I was so afraid. All the fear I had held in began to spill over, and I cried. Soft cries at first but then the longer it played, the louder I became. To make matters worse, in came the dreaded “Snack Man.” He would offer my favorite foods…graham crackers and goldfish. But then got right in my face and poked me to let me know he was my buddy. That was always the final straw. It was too much for a body to bear. I was in complete meltdown mode by this point, and no one was there to save me.
That is.. until she came.
Mom – mommy – she didn’t have a super hero cape, but she was the only thing that made me feel safe and secure again. She would swoop me away… away from watching the Walking Dead… I mean the walking/talking Veggie Tales. (At least that is how I felt.) My mom didn’t clue in right away of what was so upsetting to me, but once she did, she sacrificed her time with the other women. My mom would push me in a stroller down the hall so she still could listen. Eventually she gave up hope on Bible Study until another season.
Neither of us connected that my first memories so drenched in fear on those Wednesday mornings probably mimicked my very first memories of being separated from my birth parents and then waiting for someone to find me at just a day old. It’s like that movie, Inside Out. Riley’s first memories were joy, so that’s who steered her ship. I think mine must have been fear. I was fearful of lots of things that made me feel out of control. I heard, smelled, felt, and saw things other people didn’t. I wanted to enjoy life without having to worry about fear, being scared of the unknown, and being afraid of being unprotected. For some reason I just couldn’t. My body wouldn’t let me even though I was assured I was safe now.
My sensory issues were at their worst between the ages of about 9 and 12. I’m sure hormones didn’t help, but it got so bad that I wouldn’t leave our house. I didn’t want my mom to leave me either, so we both were sort of imprisoned by what we call “the ism.” I longed to make friends like everyone else, but I was also terrified of it. I knew that if they spent much time with me, at some point, they would see the ism.
Something like spilled milk or socks that were too itchy or tags in a shirt that wouldn’t go away or worst of all movies and TV that had things that wanted to come out of the screen and get me would trigger the ism. And nearly every time, I would have a meltdown in front of my friends. No matter how much I tried, I knew it would come like a werewolf with a full moon. I didn’t want my mom to leave my side because I thought she was the only one who knew what to do if something exploded…as it often did. I even told my parents on more than one occasion that I wish I were dead. I really thought logically that would be a win/win for everyone. They wouldn’t have to deal with hard parts of the ism, and I would be with Jesus. I’m glad they refused to agree with my logic.
What I didn’t realize (and most kids and parents don’t realize) is that sensory or “ism kids” feel physically bad everyday. Their everything is either on high alert or shutdown mode. Allergies, hives, eczema, constipation, diarrhea, headaches, migraines, low blood sugar are all physical signs of what the brain and body are screaming – “Something’s wrong! Please fix it.”
We started down the road to healing after an official diagnosis of Sensory Processing Disorder or SPD in 2009. It was such relief to know it had a name, and that there were other kids like me. I thought I was broken. I remember hearing so many times, “Six-year-olds don’t act that way” or “nine-year-olds aren’t still afraid of that.” The statements weren’t cruel. They were true. They just didn’t help me or my family know how to make it better.
One night after the diagnosis, I had a dream that Aslan from Narnia came to me. He asked me if I wanted to be healed. I said yes. And then he walked away. I thought for a long time it meant he didn’t want to heal me. (It always seemed we would take one step forward and two steps back in my progress.) But then my mom helped me to see that just like with the blind man in scripture, God always wants to heal. But sometimes He wants us to ask Him for it….just like the blind man did. Aslan walking away in the dream wasn’t a “no”, but an assurance that the healing was complete. We would just have to wait and watch it unfold.
And that promise of healing helped us through the next four to five years of therapies, diet changes, miles and miles of road trips to new doctors and a new therapist, and more and more diet changes…until one day a miracle happened.
I walked into a mall.
I led the way through the mall with my head held high…. not terrified people might bump into me. I actually enjoyed being there.
And then before I knew it, I went to the movies with friends. I spilled lemonade on my dress, and it only made me slightly annoyed not internally combust. I went to a water park and out-rode my dad. I moved from never going to church, to sitting in the back row, to on stage singing in the choir. Thankfully because of God, I am completely healed from SPD, which is literally a dream come true.
I have since shared my story with other children in Guatemala and at school. I believe God left me a souvenir from my journey with SPD. I now have use of super “spidey” senses to pick up on the pain of others. Whether it’s friends in need or children with isms, I sense what they are feeling in ways others can’t.
My mom calls me the “ism whisperer” because children with isms are drawn to me, or I am able to draw them out. I am often the “ism” translator for special needs children in our church. I can voice to the adults what these children are feeling and why they are reacting in a certain way.
He’s not angry at you.
She is angry that she can’t control the 8 million alarm bells going off in her head.
He wants more than anything to have things peaceful and calm.
She just doesn’t know how to regulate that.
I enjoy being an emotional translator for them.
So though there were days when I thought my life might end if I saw a worm or something as “horrible” as Sesame Street, I am grateful for every moment of SPD. It meant I got to see Aslan in my dreams. I got to talk to him face to face. I got to ask to be healed, and watch Him heal me slowly, but surely…. every day since.
Living with isms is hard. I’m not gonna lie, but being able to share my healing and maybe one day help other children heal, that’s my gift. And I treasure it.
Not many 15-year-olds get to have their gift from God so early.