Raising an Extraordinary Child: Rex’s Story of Autism, Blindness, and God's Grace
- Tuesday, December 02, 2008
Editor's Note: All parents have dreams for their children - dreams they'll have happy, fulfilling lives. When California native Cathleen Lewis discovered her son Rex was not only blind but also autistic, her dreams for his future received a devastating blow. While Rex's initial difficulties made his future look bleak, glimmers of hope appeared after his second birthday when signs of his unusual gift for music began to emerge. In Rex: A Mother, Her Autistic Child, and the Music that Transformed Their Lives (Thomas Nelson, 2008) Cathleen chronicles her family's journey from despair to faith and unexpected joy. In the interview below, she discusses some of the trials and triumphs of raising an extraordinary child:
Q: Rex was born with a cyst on his brain, which required surgery. Just afterward you discovered that Rex was blind. When he was labeled “autistic” by the age of two, how did you absorb another troubling diagnosis?
Cathleen Lewis: I was in complete denial at first, and angry with his teacher for suggesting it. But, at the same time, I couldn’t deny the obvious. Rex was crawling into a protective shell as the months went by. Classic therapies were not working to rebalance his sensory system. And I asked God why he had allowed this to happen. Rex was a sweet, innocent child—it seemed unthinkable that he would never be able to embrace the sounds and beauty of the world. It would be several more years before I could accept the term “autistic” – I grew into it because it was part and parcel of the child I loved so much. And I was determined to use it as a source of understanding rather than as a label.
Q: We hear a lot about the “autistic spectrum” these days. How severe were Rex’s challenges within the spectrum?
CL: Rex was of course blind, but in addition to that he was extremely sensitive to noise and touch. Putting on his socks was excruciating. Everyday sounds like doors closing, rain falling on the car roof or a ringing telephone were agony for him. Not to mention feeding him. His mouth was so sensitive, he couldn’t eat anything with even the slightest texture, and began drinking most of his meals. Instead of progressively opening up to the world like a typical baby or toddler, he was becoming more and more a prisoner in his own body every day. Only music seemed to have the power to override his sensory reactions.
Q: Statistics reveal that 70% of marriages fail when one of the children has a severe disability. How did your marriage respond to Rex’s challenges?
CL: The typical scenario for a family with a disabled child is that the father earns the living and the mother copes with the rest. Our family was no exception. But this tends to isolate the mother with all the issues and prevents the father from forging the fierce love bond with his child that is necessary to deal with extreme disability. My husband William left before Rex’s second birthday.
Q: So you were suddenly a single mom with a severely disabled child to raise and protect. How did you survive the weight of that responsibility?
CL: Once I was alone, the weight of our lives had become too heavy. I was physically fatigued, emotionally exhausted and often mentally confused. It was if I were standing on the edge of a great precipice, the more I tried to back away, the more the ground crumbled under my feet. Which is when my brother came to visit, and he surprised me by talking about God. Our family had never gone to church, so discussing faith was not the norm for our relationship. I didn’t know if God would have anything to offer Rex or me, but I did know we had nowhere else to turn. We visited a church nearby— with Rex seated in his stroller, I was scared and apologetic that he might disturb the congregation.
Q: What was that first church visit like?
CL: I mentioned to the usher that Rex was blind, and the kindly older man told me, “It’s okay. Don’t worry—we’re used to having kids here.” I don’t know whether it was the kindly words of a stranger, Rex’s look of contentment at the music, or God’s holy presence that caused me to relax in a way I hadn’t done for months. The tears I hadn’t allowed myself before began falling softly, silently, but uncontrollably. Over the next weeks, I began praying for my son and enlisting the church to pray as well. It was days before Rex’s second birthday, and I wanted Rex to talk—through God’s power and for God’s glory.
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