Yesterday, while all ya’ll in the Catholic and Evangelical churches celebrated Easter, we Orthodox crazies celebrated the second Sunday of Lent.
And yesterday was also the day we remembered St. Gregory Palamas.
St. Gregory is dear to my husband’s heart, and is the patron of a monastery that was a great spiritual help to me in my days as a seeker, so this saint has a special presence in our family. But I discovered this year, strangely, that I didn’t know as much as I thought I did about his life.
It turns out that St. Gregory’s voice has a true place in the autism community.
While I think you might be hard-pressed to find St. Gregory’s ancient comments on autism, his life reflects things that weigh heavy on our autism-parenting hearts.
I love words. I have spent most of my life weaving them together in every combination I can think of. My friends and family can attest to the fact that I talk entirely too much (and they love me anyway, God bless ’em). But, to me, words were always pennies. Sure, if you put a lot of them together, you can do something real with them. If you only have a few, though, they’re either worthless or you have to be the most creative person on the planet to get anything out of them, but who cares? By themselves, pennies and words were easy to come by and easy to dispose of.
Now that I have a son with autism, it’s different.
Words aren’t pennies anymore–they’re twenty dollar bills. You don’t just find them on the sidewalk or in your cup holder. You work for them. And when one turns up in your coat pocket, you scream a little and you throw a frickin party.
Those few words are precious words. We work hard to get them, and we work hard to figure out how to use them.
St. Gregory made a habit of praying “O Lord, enlighten my darkness,” and the prayer of the heart: “Lord Jesus Christ, Son of God, have mercy on me, the sinner,” (Luke 18:38). He dedicated countless hours to figuring out the most precious words, and praying them, using them to point his heart to Christ. He understood (and, now, in the presence of our Lord, understands better than ever) the value and power of every word on the soul.
I have wrestled with how to express this idea, but it has always been a theory of mine that William has a unique intimacy with Christ, and naturally knows him in a way that others of us struggle to do so. I have no proof of it, and little evidence–only a lingering suspicion. But when I see stories like this one from Philip Reyes from the blog “Faith, Hope, and Love…With Autism,” I think maybe I’m not crazy.
Philip is 13 years old, and learned RPM (Rapid Prompting Method, which is a philosophy of education for autism that uses a letterboard or typing as a means of communication) when he was 9. Until then, though he had a loving family, he lived in silence and isolation. RPM gave him a voice, and he was finally able to reveal his profound intelligence and observational skills.
During an interview with a friend of his, he says this about his silent years:
Philip: Before RPM I was made to feel like a wild animal. I was fearful all the time. I talked with God constantly. He loves me and He has protected me from a lot of my fears…I was treated like a pet that needed to be house trained. I am no longer there. I am free.
Bella: What kept you, my friend?
Philip: What kept me going was God always being with me. I felt His presence everyday. I knew someday I would have a voice because an angel told me I would. I only knew it would happen but not when. I am peaceful that God kept His word. When I met Soma (founder of RPM), I knew it was my best chance so far to leave my silent prison. Meaning for my life came about. I care to make the most of it. God knows me like no one else. I am most grateful for His grace.
While I don’t know if William has ever seen an angel, I do know that God is near to those who suffer and those who feel alone. I pray that God would guide his heart toward continual prayer and a life of constant communication with Him.
Every once in a while, I realize how bent my mind is toward the values of the world. While I was reading various accounts of St. Gregory’s life, and read through the parts that explained his aristocratic childhood, his grooming for a life of political greatness, a close relationship with the Byzantine emperor (Andronicus II) himself…and then he chose to escape it all and live a life of asceticism on Mt. Athos. I mean, I felt my heart sink a little.
As a mom, my instinct is to set my children up as best I can for them to function in this world, and the idea that any of my children could choose to turn away from that, even if I do it really well–no, even if I do it better than anyone else–it hurts more than it should. It calls me out.
What do I consider the highest purpose for my children? If it is high function in the world, then it explains most of why an autism diagnosis can be so devastating, because once you realize your child has autism, you realize that level of function might never happen. If my highest purpose for my children is a life of prayer and intimacy with Christ, then a diagnosis of autism doesn’t wreck everything. Because as long as God created him and his brain, He knows how to commune with William in a way that the rest of us have to work hard to figure out.
It brings some comfort and peace to the journey. Whereas we might’ve sprinted toward an unknown finish line (will he ever be socially functional enough to live alone? Get married? Be employable?), keeping a higher purpose in mind for him doesn’t change the work–only makes the finish line sure and reachable. We can do the work with him Earth-side (which, in our case, is working on those behavioral troubles and de-coding communication), and trust that God knows the inner workings of his brain enough to speak to it in a way he can hear and understand.
Thank you for your sweet example, St. Gregory. May your memory ever point us to Christ.