What guides your actions and helps you make decisions? Where do you find your strength to cope with life’s challenges, especially if you are a parent of a special needs child? If you are looking for suggestions and support, Jennifer Shaw’s book Life Not Typical: How Special Needs Parenting Changed My Faith and My Song will be helpful. Jennifer’s inspiring story will show you how she found joy and peace by giving God control. Her book touches many aspects of her life. When her son Toby was twenty-one months old, he was evaluated and diagnosed with Sensory Processing Disorder (SPD). I was so pleased when she agreed to take part in our Author Interview Series because I want our readers to know about her book and this remarkable recording artist, songwriter, speaker, and contemporary worship leader. Read my review of her book here.
Lorna: Welcome Jennifer and congratulations on all your accomplishments! Tell us about your studies, your career before you had children and how your planned “life” took a completely different path.
Jennifer Shaw >> Hi, Lorna, thank you for having me here! Well, the plan I had for my life growing up was very different from where I find myself now, that’s for sure. I would never have thought of doing what I’m doing now. My background is all in classical music and theater. For undergraduate, I did a double major in classical piano performance and vocal performance, and then I went on to do my graduate work at the Manhattan School of Music in vocal performance. I sang classical art song and operatic and symphonic pieces, and did quite a bit of performing in New York.
After several years, my husband and I moved back to my hometown of Columbus, OH, and I started teaching voice at Cedarville University and singing with the Columbus Symphony. We’d also started our family with our first daughter, Rinnah, and I took a job at a local church as the music director. I had no idea when I took that job how God would use it to change my entire life’s direction.
My church asked me to transition the music from traditional to a mixed format, and they asked me to start a band for the contemporary music. I told them I would be terrible at it, but that I would pray about it. I felt that the Lord wanted me to do it, even though to my mind it made no sense, and as time went along I also started writing songs for the band.
A few years later, my dad was diagnosed with ALS (Lou Gehrig’s Disease) which was absolutely devastating for me. Since my dad loved the contemporary music I was doing at the church, I made him an album of the songs I had written for his Christmas present. I wanted him to have it before he died. It never occurred to me that it would get out there or be heard by anyone, but people from our church started handing it around, and soon it was on hundreds of little radio stations all over the world. It really was a miracle. It was one of the first ways I saw Romans 8:28 come to life – God used that terrible time for good, even if it wasn’t the way I would have chosen.
Now I am speaking, song-writing, and performing full time and loving the ministry that God has given me. I’m so happy to be doing music that really ministers to people and isn’t simply entertainment. But it certainly was not the plan I had for my life when I was younger. God has taught me over and over that when we are open to following wherever He leads, we are in for an adventure.
Lorna: Explain the red flags you noticed that made you aware your son had to have a professional evaluation to receive treatment to help him cope with his sensory issues.
Jennifer Shaw >> Toby was born about a year into my dad’s illness, and my Dad died just before Toby’s second birthday. We had had our second daughter, Rachel, at that time as well, so he was the youngest of three. Because we were so focused on my dad, I think there were things in Toby’s behavior that we were too exhausted to follow up on as quickly as we might have if we hadn’t already been in crisis. And Toby’s first six months were pretty normal. Our only indicators of anything different in those months were Toby’s difficulty with sleeping and his absolute refusal to go to anyone but my husband and myself. However, we just assumed he was shy and not as good a sleeper as his sisters had been.
As he got a bit older, things started to deteriorate, and his behavior became more extreme and inexplicable. He really never learned any sounds, and he cried all the time. He wouldn’t eat any new foods, and it wasn’t just stubbornness. He would actually gag and choke and cry if we tried to feed him anything but a few select things. He was behind on most of his milestones, crawling late, walking late, and as he got older he stopped really even trying to move and just sat in his chair all day. He didn’t like to play, and he would only touch things made of plastic or wood. He was afraid of wind and sand and grass and water. He was afraid to go outside. We were very concerned that he couldn’t communicate, and he was getting so frustrated because we weren’t understanding him. His communication was really our first concern, and his first diagnosis that made him eligible for help was actually speech delay.
It was so puzzling for us too because somehow I knew that Toby’s personality was really sweet and easy-going and happy. He just wasn’t able to operate that way, and we didn’t know why.
Lorna: While you were losing your father to Lou Gehrig’s disease, you write you felt you were losing your son, Toby, at the same time. Toby seemed to be shutting down too. That must have been a very difficult time in your life. How did you and your husband cope with all this?
Jennifer Shaw >> Yes. Lou Gehrig’s is degenerative, and my dad slowly became paralyzed. Eventually the muscles he used to breathe also became paralyzed and that is how he died. During that last summer, we were there every day trying to help, and at the same time Toby was also shutting down. It seemed that every day was just a little worse. Toby wasn’t eating or playing or smiling. I was so grief-stricken over my dad and so frightened for Toby because we really didn’t know what his behavior meant or how bad it would get. It didn’t match anything I personally knew, so we didn’t know how to proceed and our pediatrician was telling us to wait and see if Toby would catch up.
It was the most difficult time that I have ever been through, and it was really the Lord who carried us. We were in crisis mode, and God was our peace where there wasn’t any. He would bring to mind His promises and I would just cling to that. I knew He had a plan even if I couldn’t understand how it could possibly be for our good. I knew He wouldn’t leave us. God was our rock and anchor in the midst of that terrible time, and it really changed everything for me. There were things I thought were true about God before then, but after that time I knew they were. God has been faithful to all of His promises to us.
Lorna: When Toby was twenty-one months old, he was evaluated by your Help Me Grow, the federal program for children with special needs under the age of three. Toby was diagnosed with Sensory Processing Disorder (SPD), also called in the past as sensory integration dysfunction. Tell us how you, Toby’s parents, and professionals helped him by working in tandem so that he was able to to enter school as a typical kid!
Jennifer Shaw >> Well, Toby’s first diagnosis was for extreme speech delay, so he began in an intensive speech therapy preschool program just after his second birthday. They had an occupational therapist on staff, and within a couple of weeks she diagnosed his SPD as well.
SPD is a neurological disorder where the brain misinterprets sensory input. It can affect any of the sensory systems and people with the disorder can either overreact or under-react to the sensory input so it can look very different in different people. In Toby’s case, his brain was misinterpreting touch and he also had some vestibular issues. For example, when a drop of water hit his skin, his brain would misinterpret that sensation and tell him he was being burned. Food felt like it was cutting his mouth, and wind felt like sparks going up his skin. All of the sudden, all of Toby’s behaviors made sense! He was terrified and shutting down.
Fortunately, there is so much help for SPD, and when kids get early intervention, the improvement can be startling. Toby continued in a school therapy environment for four years. He also worked with a private occupational therapist and we learned all we could and tried to do the same things at home. His progress was miraculous. Our son who was terrified to go outside and couldn’t communicate or be touched is now fine, and has been discharged from all of his therapies for two years now. He’s in school as a typical kid, he plays soccer and has lots of friends, and is just a wonderful reminder to me every day of God’s blessings to us.
Lorna: One high five moment in the book was when Toby, the child who did not eat and did not speak, after agonizingly slow progress was able to say his first long sentence about his favorite banana muffins, “Dat’s a goo’ nana fuffin, mama!” How is Toby doing now? What are still some of the challenges he faces and how your family accommodates his different needs?
Jennifer Shaw >> Toby is doing wonderfully well. I don’t know how else to say it except that he is a typical kid. He plays sports, he does well in school, and he’s that happy, easy-going guy I always thought he was. I mentioned his SPD to one of his teachers last year and he was just shocked and said he would never have thought there had been any difficulty for Toby.
As his mom, I can still tell that his mouth is sensitive and sometimes he struggles a bit when the temperatures get extreme. This isn’t a huge problem, though. We just have to be mindful in the winter to make sure he’s thinking about his temperature, and visits to the dentist or new foods are discussed first so they’re not an unpleasant surprise. When you consider where we’ve been, that’s pretty easy! I am so proud of him. He has never given up on anything in his life, and I think that has had a lot to do with his progress too.
Lorna: You are a Top 40 Billboard artist and have garnered a #3 worship song on the national radio charts. I listened to your music and was touched by your beautiful voice and inspiring messages of your songs. Tell us about this part of your life.
Jennifer Shaw >> Thank you so much. It’s been so fun to watch God opening doors and to see where He’s taken this ministry. I remember telling the pastor when I started my church job that I would happily do anything with music, but to please never ask me to speak! And now, of course, speaking is about half of my ministry. I do concert ministry where I share my story and the stories behind the songs I’ve written, and I also teach women’s retreats and do guest worship leading at churches. I really want the songs that I write to glorify the Lord and my lyrics to reflect Scripture. I hope that in every way my music is pointing others to the Lord and not to myself. Jesus Christ is what is important, and Jesus Christ is the One who changes lives.
Lorna: You and your family went on music and missions tour to the United Kingdom and Kenya! How cool is that! You minister at women’s events, worship services, retreats, and concert events across the United States. All this sounds so exciting and such a wonderful way to share your gifted voice and enthusiasm for life. Please elaborate.
Jennifer Shaw >> Yes, we are so fortunate to have been able to work with simply outstanding ministries and missionaries in several parts of the world. My husband and I recently got back from Thailand working with a ministry that is preventing children from being trafficked. Our whole family was able to go on that trip to the United Kingdom and Kenya, and it was truly a life-changing experience for all of us. The poverty in Kenya especially made a really deep impression on our kids. I also work with World Vision, the largest Christian relief organization in the world, and we are planning a missions tour with them to the Dominican Republic next spring. The welfare of children, and our response as Christians to people in need has always been a passion of mine.
I spend most of my time in the US, and it’s always been such a blessing to get to see the family of God at work. I meet so many amazing people at churches and radio stations and ministries all over the country, and I think I get a small glimpse of what heaven will be like when we’re all together with the Lord.
Lorna: We appreciate so much that you found the time to share your story with us! What is on Jennifer Shaw’s To-Do list for the next months? Please give us your links so that we can follow you and the links where we can buy your book and music CD’s.
Jennifer Shaw >> Well, right now I am finishing up my fourth album which should be out in the fall, so make sure to be looking for that! I’ve also got a full fall schedule that I’m preparing for with concerts and retreats. The rest of the summer I’m spending with my kids and my husband, because they are my favorite people to hang out with!
People can always find us at www.jennifershaw.com – there’s lot of information there, my blog, my music, the store where you can buy my albums and book, and different videos and things as well. We love to hear from people! You can contact us at firstname.lastname@example.org. Readers can sign up for our email update to hear about the release of the new album at http://jennifershaw.com/contact_us. You can also follow me on twitter at https://twitter.com/#!/shawjennifer, or be my friend on facebook at http://www.facebook.com/jennifershawfans. And of course, you can find my book and my music at my website, or on itunes or at amazon or other major outlets.
Thank you so much for having me! I’ve loved sharing with you.
Lorna: Congratulations Jennifer Shaw–Autism Speaks, the world’s leading autism science and advocacy organization, has added the book Life Not Typical: How Special Needs Parenting Changed My Faith and MySong (Carpenter’s Son Publishing) to their Resource Library.