Sunday, April 19, 2015

My Autism Mountain

April is Autism Awareness month, and I have been reflecting on ten years ago when our family tentatively, reluctantly entered a new world--a place where we live with autism every day with our beloved son. Elias is 13 now, a full fledged teenager. Our family has traversed some rushing, muddy waters and many bridges in that decade. We have learned to construct bridges to cross, but some have been built for us--at times almost magically appearing to rescue us when the waters got really deep.   However, thankfully every year autism awareness increases around the globe, and more people are more perceptive to children and their families who struggle with this puzzling socialization and language disorder.

Since I have older children, I noticed a few indications in his delayed speech development when he was about two and a half, but did not fret or worry about the differences. He was working with a speech therapist at home, and I just assumed everything would smooth over. I painfully noticed that he stayed on the sidelines when he was around other children; he didn't seem to know how to navigate the playground with them.  Play dates were always a disaster. As he turned three and the difficulties did not dissipate, I began to have a feeling in my gut that perhaps he had more severe things to surmount than a speech delay. Hearing tests and other therapies were administered, and eventually a pediatric neurologist diagnosed him with being on the autism spectrum.

My husband, also a physician, was not able to be with me on that definitive day. I remember vividly walking out of the office dazed and heartbroken. I cried in my car as I sat in the parking lot, feeling very much alone.  The doctor was clinically precise, but there was no prescription, treatment, or medication to repair this disorder. I had always known how to proceed before in my life, but autism had me stumped. I felt like I was in a trench, a very large chasm, and did not know how to climb out.

For several months I woke up in the morning,  and I hoped his diagnosis was all a terrible dream. His behavior, learning style, and struggles mystified and confounded me. Since he did not know how to communicate and was so achingly frustrated, there were many parallel breakdowns-- both his and mine. I would run to the mudroom if I felt a sting of tears coming. I desperately wanted to help him, but did not know how. My naturally cheery disposition had taken a major dunking.

Therapists were kind and attentive to our needs, and we tried to jump into every interventional therapy that was available. We studied, read, and reached out to others who were struggling with our battle. I tried to be emotionally stable for my family (my blind father-in-law was living with us in those years too), but I was crestfallen--realizing my own inadequacies of how to teach him. I think, most of all, I struggled with a grief and guilt that would not dissolve--no matter how much I tried to heal. Simply, it was hard for me to accept that he would live with this disorder for the rest of his life, and I did not know how to proceed.


Climbing in the mountains with his brother and dad.

It was at this time that a dear friend asked me to help mentor at a Girl's Ranch for two weeks. My family urged me to exit all my responsibilities at home so that I could help at this ranch for girls--teaching guitar, hiking, kayaking, and helping the girls with woodworking and pottery. It is a valley that has filled my reservoir for a long time so I accepted the offer to assist the girls, not ever calculating that I would be the real recipient in the offer.


The Tetons, where the ascending to the peaks began....
One morning our leader had planned an early morning hike, before dawn, up to the top of a nearby mountain. We were instructed to walk in the dim light up the path, thinking about a nature analogy that resonated with us as we hiked. Starting out in the dark valley below, the teenage girls and I began to summit the mountain. It was early morning, and the girls were tired so we walked in silence. A few hours later, after getting to the top, we gathered together to share the analogy that we had been reflecting about on our ascent.

I don't remember what anybody said that day on the crest of the mountain except for Dick, our leader. It was simple and heartfelt, but his words resounded in my heart very loudly, counterpointing the early quiet morning on the ridge. He simply said, "Sometimes it is dark and dim in the valley when you start your journey, but as you climb step by step, the light will come until you see the amazing panoramic view." As we all sat on top of the mountain gazing at the newly lit valley, his analogy jolted my heart as I likened it to what we had just experienced. With the light streaming into every crevice and corner below me, I vowed that I would begin to scale my own autism mountain. It was time to climb and see some higher elevation.

 In the last ten years, Elias's steps forward have provided immense joy, and sometimes the backward steps can baffle me. I admit at times I have longed for more normal, free flowing conversations that I experienced with my other children. I missed talking about books and ideas, with concepts ricocheting like lightening streaks all over the room of exciting things to think and experience. But now I realize the lightening streaks were there all along with Elias and our family. Autism has given us a precious gift, a journey, that I would not trade for all the money in the world. I continue to marvel at Elias's strides and advancements--his ability to read, do math, paint pictures, sing in a choir, play on teams.  At his new school in Qatar, he can shoot more baskets than anybody else, and kids respect him for it. Observing his improvements has truly brought much joy that I previously could not have ever imagined.


Graduating from elementary school where he gave a talk, like everyone else. We practiced for a few weeks, and many people said he spoke just like any typical kid. I was a little surprised how confident he was up on the stage for his one minute talk. Since that time, he takes any opportunities to be on stage, whether he is talking, singing, or performing.

As I watch people interact with him outside our family, I can see he brings a light-hearted, compassionate approach to those around him. Coaches have told me they instruct the kids differently when Elias is on the team. When there are practices, drills, and games, there is more camaraderie and support to each other--even when he shoots a basket in the other team's hoop. The simple values and principles that we all want to live by he already inherently knows; he is always kind, encouraging, and honest. He brings a smile to everyone's face when they meet him or talk with him. Perhaps it is because as he always says, "I want to always be around people, Mom. I just love people."


Enjoying his uncle....

I will admit that Elias's autism has "protected me from myself"--meaning my more selfish, willful self. Time, money, and resources go to him freely. Our patience levels have increased--to be able to wait for all the strokes of the paintbrush to make a beautiful painting. My husband and I don't expect the canvas to have every color, shape, form, and texture in a short amount of time. Many things that used to seem looming, important, and significant are not anymore.


Hiking in Central Park on a trip. We walked 17 miles that day. No lie.
When he doesn't get invited to a party or other gathering. I am not offended. I am more willing to help others understand about autism if we are in a theatre, restaurant, or other public place. Initially, it was difficult for me to explain, but I have found people are very understanding almost all of the time. Believe me, I have had to explain autism to people from all over the world now that I live in Qatar.... And I am not too dense to realize that our other children are also "saved from themselves" also. At a time in adolescence when it is natural to think more inwardly, their vision had to be more outward in order to survive in our family. As I have watched from afar and viewed their nurturing natures develop, I am continually grateful for all the tutoring Elias gives us. 


Enjoying some Christmas spirit with our English crowns on.

In the last decade, step by step I have reached some high, beautiful ascents on my autism mountains. I have seen glorious views--where  Elias and I have skied and hiked together. Last week in a sailing camp in Qatar (where we now live), he even steered us both on a little sail boat to an island (the wind was light that day, but hey, we were gliding to an island together).  Two weeks ago we went to a the Modern Arab Museum here in Qatar where he has four of his paintings being shown in a student exhibition. Elias has taught us all how to climb a little higher in our family--to summits and views we never would have otherwise been so blessed to see.

For about the first two or maybe even three years, I could not say the word autism without a lump in my throat or a stray tear. Of course, I would change his diagnosis for him if I could, but not for me--nor for our family. I have accepted there will always be an autism peak to climb. But I have also seen breathtaking views, light filled valleys, countless bridges, and maybe even some northern lights on this autism journey. Undoubtedly, there will be some exhausting crests ahead, but the rugged cliffs are worth surmounting and scaling. Every time the view transforms me, and makes me want to keep climbing.
Elias has amazing endurance, and can climb for hours. He is a great hiking companion, ready to tackle or surmount any ravine or path. Often times he leads the way, and we follow him up the mountain.