The Sideways Lens - Introduction

 

For my beloved Sheldon Lee, who blesses me with his smiles, and warms my heart with his hugs.

 

Introduction

November 12, 2008 is a day I will remember forever. On that day, in a cheery and colorful office, the child psychologist looked up from her stack of papers and said, “In my professional opinion, Sheldon presents classic symptoms of Autism Spectrum Disorder.” There it was, out in the open. She said the word I knew was coming, yet my heart sank though my feet when I heard it – Autism.

I have been blessed to work with several children with Autism through my experiences as an educator, so I was familiar with the condition. In fact, at Sheldon’s two year check up, I was the one who pressed the doctor to allow him to undergo evaluation, so we could get him as much support as possible as early as possible. All my knowledge and background couldn’t prepare me for the punch I felt in my stomach that day as my fears were confirmed. All I could do was look at my almost three-year-old little baby, and mourn the loss of a “normal” life that we as parents had wished so much for him to have. All I could do was cry.

I must begin by making it very clear that my little guy is a darling young man. His smile is the most genuine smile you will ever see, and it is positively contagious. You can almost see his little mind working when he’s playing, and I can’t help but sit in awe of how uniquely and wonderfully made he is. Sheldon sees the world in black and white, and he has no concept of how to lie or why anyone would even consider it. He has a refreshing honesty and openness about him that just inspires you to be yourself. I love that little man more than words can express, and I am grateful that God trusted Cory and me enough to bless us with the task of caring for such an amazing young man.

Like all things, with the blessings, come significant challenges. One of the more prevalent indicators of Autism is a lack of ability to communicate. This is one of the keys to understanding why it is that many children with Autism have “meltdowns”. When Sheldon’s little body can’t handle something or he needs something, he has no way other than crying, hitting, and kicking to get our attention. Despite using limited sign language and picture charts, we still sometimes have an incredibly difficult time figuring out what he wants or needs.

Sheldon also has a sensory integration disorder, which is fairly common in children with Autism. His little body doesn’t process the constant barrage of sensory information the way that you or I can. In Sheldon’s case, his sense of hearing and touch are overdeveloped, while he never seems to get enough visual stimulation. This sensory disorder has been the source of more meltdowns than I care to count. Because he is especially sensitive to sound, something as simple as a trip to the store would turn into an all-out war, with Sheldon, my husband Cory, and myself all three crying before we left. Something as common as the sound of a baby crying on the opposite end of the store would send fists flying, legs flailing, and screams erupting.

Even simple tasks such as brushing Sheldon’s teeth would turn into a daily battle. With his sensitive sense of touch, he couldn’t stand the feeling of the bristles scraping his little teeth, and he’d do whatever he could to stop it. We learned very quickly that although he was small, he was a very powerful young man!

Slowly our family became isolated from our friends, church family, and even some members of our own family. People didn’t understand that because of Sheldon’s sensory disorder we just couldn’t go many events or gatherings, and they viewed our continual absence as a sign that we weren’t interested in their lives or in spending time with them. We couldn’t get people to understand that we could no longer live like we used to or like a “normal” family (if there even is such a thing) would.  Our new “normal” wasn’t better or worse than anyone else’s “normal”. It was just different.

While all of these changes were going on, I was battling personal health issues of my own, and I slowly felt myself sinking into a deep depression. I suffer from migraines that were so severe I lose movement in the right side of my face. Since I couldn’t tolerate the volume level in a music room, nor could I speak clearly most of the time, I was no longer able to teach. Without my income, our finances were laughable to say the least. We felt as though we had been abandoned by our friends. No one called. No one sent cards. No one even asked how we were doing anymore. We just did the best we could to survive each day that God gave us.

Even some of our own family members couldn’t understand why Sheldon’s care was so challenging. They would say, “He just sounds like your average kid. They all throw fits.” They didn’t see the almost daily beatings we took for doing something as basic as brushing Sheldon’s teeth. They couldn’t wrap their heads around the fact that while other kids were throwing fits to get their own way, Sheldon’s meltdowns were a survival instinct. They were fierce. Giving in to him wouldn’t stop the fit. He little body would go and go until it physically couldn’t fight anymore, because to him, he was fighting for his life.

Time went by, and I continued to sink deeper into depression. I began to question why God would allow us to go through this day after day. I begged Him to heal our son and let us live a “normal” life. I begged him to heal me so I could return to work and provide for my family. Days became weeks, weeks became months, and the months grew to years, yet our lives remained trapped in the same pattern. It was a struggle to enjoy the good times, because they were overshadowed by the seemingly never-ending bad ones. I felt trapped by hopelessness and despair, and I longed for something…anything that was different than the life we had been living.

Without the financial resources for medication or therapy, I finally broke down and turned to the one person I should have turned to in the first place for help – God. Instead of making demands for how I thought He should handle our lives, I began praying that God would change me. I prayed that he would help me to focus and meditate on all of the amazing characteristics that make Sheldon unique. I prayed that God would help us find joy in the good moments we shared. I prayed that God would heal our little man, not only so I could maintain my sanity, but more importantly so that the world could see how truly intelligent and amazing the little guy behind those meltdowns is. I prayed that God would open my eyes to all the blessings He had provided to us, instead of all the challenges.

As I prayed for God to change my perspective, I immediately saw those changes begin to take place in my life. Instead of feeling helpless, I felt empowered to help Sheldon deal with the sensory problems that were plaguing him. I began to truly appreciate how amazing my Bubba was. My eyes were opened to a world of truth, honesty, and beauty that I never imagined existed in my own hectic house. I realized that my life experiences and pressure from social norms and expectations were clouding the way I viewed my child and my own life.

Keep in mind that I’m no master theologian, nor do I hold a doctorate in any particular specialty. I am simply the mother of a young child with Autism who set out on a journey to change my perception of this condition, and in the end found that it was I who was blessed when a little boy with Autism changed my perspective on everything.