On Friday, September 9th, I woke up without peripheral vision. As I struggled to get our kids ready for school, I silently thought to myself “I can’t see.”
I knew what that meant. It wasn’t a first time experience. It was an impending migraine. I took my medication and went back to bed but despite the fact that the medication rids me of my migraines pretty rapidly, I still only managed to leave my bed twice that day.
You see, on Thursday I drove to Birmingham, Alabama to attend a one-day conference. It was exciting. It was inspiring. I learned a lot. I got a chance to spend time with an extraordinary young man that I am mentoring. It was all worth it but in the back of my mind I knew I would pay the price.
This is ASD (autism spectrum disorder) I live with. Social anxiety and sensory processing issues are a huge part of my experience. The way autism impacts those who live with it is as vast as the personalities of the people themselves. My life with autism isn’t going to look like the life of the other person you know with autism.
In fact if you’re secretly looking for anything that would indicate that I am on the spectrum, I would say that you most likely won’t see anything at all. Sometimes understanding how autism impacts me can only be found in what you don’t see.
Let me explain.
What you don’t see is me leaving my home much beyond work, church, and trips to the gym. You won’t see tons of pictures of me out with family and friends on social media.
You won’t see me at the football game, or the concert that everyone is going to. You often won’t see me hanging out at the mall or at an amusement park. You won’t always see me at the Memorial Day, Labor Day, or Indenpendence Day cook outs and fireworks shows.
I love all of those events and environments, but the reality that I live with is that I am often forced to choose very carefully how I spend my time and my sensory resources.
Perhaps that’s why when you see me I appear to be fine. What you think you see is someone not affected by autism when in reality what you see is someone who has given up dozens of opportunities to leave home so that I can be seen in the few places you always see me.
What you don’t see is how much I prepare and how much I pray.
Preparation and prayer for most people is something they do when they take an exam.
Preparation and prayer for me is what I have to do just to exit my home. Everyday I spend hours preparing to encounter a world that my brain isn’t built for and I pray for the grace, courage, and strength to manage it successfully.
When you see that I’m doing fine just know that fine is a short distance between not being able to get out of bed on a Friday and being able to speak in front of hundreds of people on Sunday morning.
Fine is a short distance between failure and faith and fatigue and focus. Like a smart phone app stuck in refresh mode my brain is constantly searching for data, taking in the sights, sounds, and smells using up all of my precious data and the end result is always a drained battery that leaves me with just enough physical energy to climb out of bed to use the restroom.
That’s what you don’t see, but let me tell you what you do see.
What you see is a warrior. Despite my difficulties with sensory processing and social anxiety what you don’t see is someone who is weak. I am strong. I am a fighter. I am a gladiator.
Like the atheletes who grace the gridiron on Saturday’s and Sunday’s playing the great sport of football my life is the perfect blend between beauty and brutality and between grace and grit.
What you see is a gift given to me by God. A gift to persevere. A gift to overcome. A gift to inspire. What you see is a talent for transforming life’s toughest moments into life’s most teachable moments.
My life on the spectrum showcases the strength of the human spirit. My challenges haven’t defined me but rather I have publicly defied the odds that have been stacked against me. What you see is God using the stage of my struggles as a platform to showcase a divine strength. A strength that is so other worldly that it actually makes my life look easy.
What you see is the grace to learn how to be less of a taker and more of a giver.
Life on the spectrum may have taken parts of me but rather than responding by becoming a victim and a taker it has motivated me not to take things for granted but to take chances, take risks, take opportunities, take charge, and to take a stand and by taking these things I have and in return I have been given the grace to give the world the best of me.
On Friday, September 9th my day started with what I couldn’t see. While it wasn’t an abnormal occurrence it was still a frightening moment but life and faith has taught me a valuable lesson that I want to share with you:
Faith is the insistence of the existence of things I can not see.
“For we walk by faith, not by sight.”
II Corinthians 5:7 NKJV
Relate on so many levels, brother. Thank you for this. Encourages me to keep on. 🙂
What an enlightening statement you’ve made in this wonderful commentary. My son who is 30 years old is a singer/performer and works very hard and is very devoted to his career. When he was diagnosed at the age of 3, his autism was so severe that it was recommended he be institutionalized. His life is nothing short of a miracle. He has overcome incredible challenges and obstacles throughout his life. Your words have given me great insight as to how he must have to fight and battle everyday to be able to accomplish what he does when he steps out on that stage. But we know our precious Lord is using him to a message of hope and inspiration to all who hear him. Thank you for your very powerful words. It has helped me understand my son’s challenges even more.
Thanks for following. I will keep you and your family in my prayers. Also be on the look out for my book being released next month on January 24th. The title of the book is I am Strong.
I share the same sentiment with the two previous replies. I’d also like to add that sharing your experiences is a learning tool, and better hope for the future because hardly any is provided within the noise of media in all forms. My son is five years old, on the spectrum and hard of hearing. It’s difficult taking him places (church included) because of PDD-NOS and sensory processing disorder. Just like you, no one can tell anything is wrong with him by looking at him. So each time someone says to me in a nonchalant manner; “ain’t nothing wrong with him” or “he’ll be just fine”, I accept it and say thank you. They mean it passively without seeing my son’s entire struggle. I mean it aggressively with faith, calling what is not as it is instead of trying to argue with ignorance. He has no choice but to strive with autism, while they can choose to remain ignorant. I will continue to follow you on your journey. Know that you have more prayer warriors in your brigade. God bless.
Thanks for following. I will keep you and your family in my prayers. Also be on the look out for my book being released next month on January 24th. The title of the book is I am Strong.
This is my life every day and every night. My son is 4 and just got diagnosed a month ago. I have suspected that my husband is on the spectrum for 8 years. Every night, I prepare for the next day for my son and everyday, I carefully manage is time in the outside world. I have done this for years thinking that was just normal for everyone. But at least now, I can prepare, plan, and manage better. Thank you so much for putting this into words so clearly and beautifully.
Thanks for following. I will keep you and your family in my prayers. Also be on the look out for my book being released next month on January 24th. The title of the book is I am Strong.
Thank you
Thanks for following. I will keep you and your family in my prayers. Also be on the look out for my book being released next month on January 24th. The title of the book is I am Strong.
Thank you. My son (10) was diagnosed last week and it makes so much sense now. Your piece jumped out at me this morning on my FB feed. I needed to hear what you had to say. Blessings.
Thanks for following. I will keep you and your family in my prayers. Also be on the look out for my book being released next month on January 24th. The title of the book is I am Strong.
Wow. Thank you. I almost cried when I read, “Every day I spend hours preparing to encounter a world that my brain isn’t built for…” Somehow it’s comforting to know that I’m not the only one. I am so glad you shared.
Thanks for following. I will keep you and your family in my prayers. Also be on the look out for my book being released next month on January 24th. The title of the book is I am Strong.