Autism has changed me. Mossy has changed me. And for the better.
How could this child, who cuddled with me and played so cheerfully with animals, change on a dime with rage? Screaming, yelling, cussing, thrashing his body…. all over as small of an issue as eating a healthy snack or taking a shower.
Through therapy, coping skills coaching, and a rigid routine, we would make progress. Then an upcoming vacation, birthday, or school break would send us into a tailspin backwards. I would break the bedtime routine and let Mossy stay up late to finish a movie with me, and then he wouldn’t go to bed without a fight. It didn’t make sense. Good, fun experiences would be sabotaged.
What I didn’t know then, was that any change – positive or negative – brought anxiety. Without the ability to regulate moods and energy (sadness, fear, anxiety, anger, excitement, happiness) Mossy’s brain would scramble, and so would his behavior and language. The sad part is that he also hated being out of control, and therefore was growing to hate himself.
As I’ve made connections in the mental health world, and led support groups for parents and caregivers of loved ones with disabilities or mental illness, I’ve discovered that there are so many others caught in a similar cycle of hurting and hoping. More than a few times, we cover our heads with pillows in order to scream, powerless to heal. There’s a life-long grieving that takes place in the heart of a caregiver who is in it for the long-haul. To love, support, and provide stability even when no change can be seen takes endurance and faith.
I’m learning to look with different eyes, and to listen with different ears. There are often no quick fixes. Many times, there is a broken story that took years to unfold, and will therefore take years to recover from. Sometimes, the story is beautiful: two loving parents who do everything possible to help… and yet the disease destroys. Just like diabetes, congenital anomalies, or pre-term birth complications, mental illness can’t always be healed. Medications and therapy can provide a higher quality of life, but there are set backs, hospital stays, and tears.
Thanks to Amazon Prime highlighting movies about African Americans in the month of June, I stumbled across “The Soloist.” A moving story about a homeless black man with an incredible history. As a young boy, Nathaniel Ayers was a shockingly gifted musician. He was awarded a scholarship to Julliard and played in the same orchestra as Yo-Yo Ma! A mental break down led to a diagnosis of schizophrenia and life on the streets of L.A.
An L.A. journalist encounters Mr. Ayers and finds himself attempting to fix, heal, and help. He fails over and over. He succeeds over and over. Eventually, he learns to accept Nathaniel and understands the most powerful gift he can give is simply his friendship. During that scene in the movie, I was overcome with emotion and sobbed. I’m not exactly sure why. Perhaps the years of my own struggle found a bit of peace in being reminded that consistent love and support is the best thing I can give (and of course, prayer and hope in Christ!).
True to my curious nature, I had to read the book to see if Hollywood had accurately portrayed this unique friendship between a journalist and homeless man. The book is beautiful. If you have time to read or listen to “The Soloist: A Lost Dream, An Unlikely Friendship” by Steven Lopez, you will have the opportunity to see and to listen. I hope you will be changed. I hope you find compassion for the mentally ill, and an opportunity to demonstrate the love of Christ to someone who may be suffering and tormented in a way you cannot comprehend.
Steven Lopez ends his book with these thoughts:
“I sit through the concert, thinking back on two years that have been more exhausting and fulfilling than I could have imagined the day I first set eyes on Mr. Ayers. Maybe I’m now at a point of letting go, of recognizing the limitations imposed by so severe a disorder as schizophrenia. I have fought it from the beginning, wanting to believe things would be different in the case of Mr. Ayers, and even now I hold on to the hope that he might one day get past his fears, past the cyclical descents into paranoia and rage, and give a try to medication that could vastly improve his life. But I know it’s not that simple, that there are no magic pills, and that thousands before him have gotten better only to chuck the meds and sink back again into the grips of incurable disease. I’ve learned to accept him as he is, to expect constant backsliding, to prepare for the possibility that he could be homeless again or worse, and to see hope in small steps.”
I see truths in 1 Corinthians 12 take shape in a new light….
22 On the contrary, the parts of the body that seem to be weaker are indispensable, 23 and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, 24 which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, 25 that there may be no division in the body, but that the members may have the same care for one another. 26 If one member suffers, all suffer together; if one member is honored, all rejoice together.
This is the first of many posts I hope to write on the topic of listening. May God give us the grace to broaden our love and compassion for one another. May we slow down enough to see each other as valuable and created in the image of God, with something of value, and worth being redeemed.