The picture-perfect life that singer/songwriter/speaker and now author Jennifer Shaw planned and initiated came to a screeching halt with a series of life-changing events that shook Jennifer’s faith to its core. After sharing her story in front of audiences around the world through her concerts and speaking engagements, Jennifer decided to open the old wounds and tell the entirety of the story in her new book, Life Not Typical: How Special Needs Parenting Changed My Faith and My Song (Carpenter’s Son Publishing). It was a laborious task to relive some of the most painful moments, but Jennifer felt compelled to share the good, the bad and the ugly so that other families who are facing similar challenges will find hope and solace even in the darkest hours.
“I remember feeling like I was falling and had no idea how far down the bottom was,” says Jennifer. “There is no other way to describe it except that when I got to the bottom, God caught me. I was still in the pit, but He was there with me, and that gave me something to grab on to.”
Jennifer began her musical ambitions early in life with an intense love for the piano, and after hearing her first Beethoven sonata, she was hooked on classical music. At an audition for a piano scholarship, she was urged by her choir director to also audition in voice, and much to Jennifer’s surprise, ended up receiving the voice scholarship instead. She studied her craft in New York and received a Master’s Degree in Vocal Performance from the Manhattan School of Music. Jennifer has performed in over forty shows in the theater, everything from Shakespeare and straight drama to musicals and children's theater.
After moving back home to Ohio, Jennifer began performing with the Columbus Symphony and later appeared at Carnegie Hall. She also became a Professor of Music for Cedarville University as well as music director for her local church. Life for Jennifer and her husband and their two daughters seemed to be moving along nicely. But in 2003, Jennifer miscarried and unbeknownst to her began to bleed internally. After symptoms persisted, she was rushed to the hospital only to find out that she was dangerously close to death. After recuperating for over a month, Jennifer learned that her beloved father had been diagnosed with Lou Gehrig’s disease, a fatal diagnosis for which there is no cure. The family was devastated as their father began to deteriorate over the coming months. Jennifer became pregnant again and gave birth to son Toby the next year. But their brief joy turned to terror when her six months old son was found to have severe hearing impairment from repeated ear infections. Several surgeries followed on her baby boy over the next few months, but Toby’s behavior got more and more bizarre and extreme. He couldn't touch anything, be touched, couldn't eat anything, made no sounds except for crying all the time, couldn't get water on himself or be messy. Jennifer’s charmed life seemed to be spinning out of control.
It was during speech therapy for Toby that a therapist began to help the Shaws put the pieces together. “Toby qualified for an intensive speech program since he didn't have any sounds, and they also had an Occupational Therapist on staff,” Jennifer recalls. “She asked us if we'd ever heard of Sensory Processing Disorder (SPD), and we said no. She started describing it and we were like, ‘Check, check, check, that's our Toby.’ She said many speech-delayed kids have SPD. In Toby's case, he was so overwhelmed and frightened that he was shutting down so learning to talk was his last concern.”
But giving the disorder a name did not take away the frightening and severe symptoms. “SPD is just unrelenting,” says Jennifer. “He was never okay. It was extremely intense, and he could never go with anyone else, so there was no respite, even at night. Also, there was the fear of not knowing what would happen, not knowing if he would ever be ‘okay’ or if he would be able to live a normal life. You have to rethink what dreams you have for your child. We went from ‘maybe he'll be a great this or that’ to ‘maybe he'll be able to walk on grass someday.’ When you work for eight months every day just to get him to eat a piece of bread, it changes your definition of success.”
The realities of Sensory Processing Disorder are harsh. Some children respond to therapy to some degree while some have small gains and some great gains. SPD is closely aligned with autism in that every autistic child has some form of SPD. To date, the medical community is unclear of the exact connection. SPD is also often misdiagnosed as ADD or ADHD. “We were just hoping he would be functional,” recalls Jennifer. “We were also told that all therapy that can be done before age 3 would actually be ‘re-wiring’ his brain, in essence, healing the problem. After age three, the brain is not pliable enough, and the therapy shifts to coping techniques. Our friend's son is in that situation, and it is hard. It's also very common since SPD is not usually diagnosed so young. In hindsight, we considered it a blessing that Toby was so severe that it was obvious something was really wrong early enough to get the therapy in time. A year later, when he was retested, they described his progress as miraculous, and told us repeatedly that they'd never seen anything like it. One therapist told us that given his intake profile, he ‘should not have been possible.’”
So how did Jennifer’s song and faith change as the book’s subtitle suggests? Jennifer moved away from her classical operatic training, where she performed in Puccini operas, to writing and performing contemporary Christian music, offering the lessons God was teaching her in a vocal medium she could express to a broader audience. Her quick radio success, garnering a #3 on the national charts with her CD entitled Love Broke Through, solidified her direction as a touring Christian artist and, when not on the road, she continues to serve as worship leader at a church near her hometown. Her self-penned songs have garnered top spots on the national Christian radio charts as well as been used by Lifeway Christian Resources for several musical projects. Jennifer’s songs have been powerful reflections of the faith walk she has learned can be both treacherous and sweet.
In conjunction with the release of the book in early 2012, Jennifer released a song entitled “Life Not Typical” that she co-wrote with Lifeway producer and songwriter Paul Marino. There is also a music video directed by Jeffrey Kubach whose credits include the hit television show Survivor as well as a nomination for Pop Music Video of the Year honors from Gospel Music Channel. But ultimately, Jennifer hopes the book inspires families who face treacherous circumstances to seek God’s strength and provision.
“Through it all, I learned that God is amazingly powerful,” Jennifer continues, “and that He will use all things to the good of those who love Him, even when we can't see how that could be possible in the moment. I now understand that our purpose here is just to glorify Him, and that these are ‘light and momentary troubles’ as Paul wrote. When we were going through everything with dad and then with Toby, I could trust God for His goodness and strength every day, trust Him with my dad, and trust Him for the strength I needed to deal with my special needs child. And He absolutely met us there.”