Jennifer Shaw
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 her family's journey in her new book, Life Not Typical: How Special Needs
Parenting Changed my Faith and my Song (Carpenter’s Son Publishing/STL Distributors). 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-month-old son was found to have a severe hearing impairment from repeated ear infections. Several surgeries followed on Toby over the next few months, but his behavior became increasingly 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 a speech therapy session 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. One study estimates that 1 in 20 children in the U.S. are affected by the disorder. 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 told that therapeutic methods used before age three 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 now, and it is hard. It is also very common since SPD is not usually diagnosed so young. In hindsight, we consider it a blessing that Toby's behavior was so severe at an early age that it was obvious something was really wrong. 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, it ‘should not have been possible.’”
As the subtitle of the book, Life Not Typical: How special needs parenting changed my faith and my song, suggests there were other dramatic shifts in Jennifer's life. She moved away from her beloved classical operatic pieces, where she performed in Puccini operas, to writing and performing contemporary Christian music. She poured the lessons God was teaching her into heartfelt lyrics and music, giving her message a new voice with which she could reach a broader audience. Her quick radio success, garnering a #3 hit on the national charts with her CD entitled Love Broke Through, solidified her direction as a touring Christian artist. Her self-penned songs have made her a top 40 Billboard artist as well as been used in various choir and chorale musical projects by Lifeway Christian Resources. Her new CD entitled Someday features the theme song for Remember Nhu, a non-profit organization which fights child sex trafficking around the world. Jennifer wrote the song “To Be Love” on a recent trip she made to Thailand to minister to the children that Remember Nhu has rescued. Another song on the new album called “Your Child” is Jennifer’s heart-felt anthem for all special needs parents, is now a Telly Award-winning music video (see above) directed by Jeffrey Kubach whose credits include the hit television shows “Burn Notice” and “Survivor” as well as a nomination for Best Pop Video from Gospel Music Channel. The music video debuted on Focus on the Family’s “I Am Pro-Life” Facebook page to over half a million followers and has been used by Joni Eareckson Tada’s organization, Joni and Friends, a worldwide organization which serves people with disabilities. Jennifer’s songs have become powerful reflections of the faith walk she has learned can be both treacherous and sweet.
“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.”
###
“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-month-old son was found to have a severe hearing impairment from repeated ear infections. Several surgeries followed on Toby over the next few months, but his behavior became increasingly 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 a speech therapy session 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. One study estimates that 1 in 20 children in the U.S. are affected by the disorder. 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 told that therapeutic methods used before age three 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 now, and it is hard. It is also very common since SPD is not usually diagnosed so young. In hindsight, we consider it a blessing that Toby's behavior was so severe at an early age that it was obvious something was really wrong. 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, it ‘should not have been possible.’”
As the subtitle of the book, Life Not Typical: How special needs parenting changed my faith and my song, suggests there were other dramatic shifts in Jennifer's life. She moved away from her beloved classical operatic pieces, where she performed in Puccini operas, to writing and performing contemporary Christian music. She poured the lessons God was teaching her into heartfelt lyrics and music, giving her message a new voice with which she could reach a broader audience. Her quick radio success, garnering a #3 hit on the national charts with her CD entitled Love Broke Through, solidified her direction as a touring Christian artist. Her self-penned songs have made her a top 40 Billboard artist as well as been used in various choir and chorale musical projects by Lifeway Christian Resources. Her new CD entitled Someday features the theme song for Remember Nhu, a non-profit organization which fights child sex trafficking around the world. Jennifer wrote the song “To Be Love” on a recent trip she made to Thailand to minister to the children that Remember Nhu has rescued. Another song on the new album called “Your Child” is Jennifer’s heart-felt anthem for all special needs parents, is now a Telly Award-winning music video (see above) directed by Jeffrey Kubach whose credits include the hit television shows “Burn Notice” and “Survivor” as well as a nomination for Best Pop Video from Gospel Music Channel. The music video debuted on Focus on the Family’s “I Am Pro-Life” Facebook page to over half a million followers and has been used by Joni Eareckson Tada’s organization, Joni and Friends, a worldwide organization which serves people with disabilities. Jennifer’s songs have become powerful reflections of the faith walk she has learned can be both treacherous and sweet.
“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.”
###
Fast Facts about Jennifer Shaw:
- As a recording artist, Jennifer has achieved national radio chart success, scoring a #3 hit on the Inspirational radio chart and becoming a top 40 Billboard artist with her CD, Love Broke Through, produced by Lifeway Christian Resources’ Songwriter of the Year, Paul Marino.
- Jennifer’s co-penned song, “God Loved the World,” was the theme song for the annual Evangelical Covenant Church conference and was featured in last year’s Lifeway Christian Resources' Christmas musical. The song was also made into an Easter choral anthem and was Lifeway's #1 best-seller.
- Jennifer's book Life Not Typical: How Special Needs Parenting Changed my Faith and my Song has been added to the Resource Library of Autism Speaks, the world's leading autism science and advocacy organization.
- Jennifer shared the stage with Natalie Grant at the Triennial event in Washington D.C.and opened a concert for Big Daddy Weave in Ohio.
- Jennifer sang the National Anthem at the Pittsburgh Pirates versus Cincinnati Reds Major League Baseball game.
