CP Colors our World

As with life in general, Carol Shrader learned that with a family of five, including two children with cerebral palsy (CP), balance is essential. “Giving my boys every opportunity to develop physically and meet certain milestones was certainly important,” Carol said. “However, I also needed to let Benjamin and Mason discover what drives and motivates them beyond their physical needs. Of all the obstacles that my boys have had to knock down and plow over, there were times when the most significant barriers were the ones that I had to overcome so they could succeed and be their best.

“I want to tell moms to get out of the way and allow your child with disabilities to thrive as a person. We want the best, but we can be so concerned with the expected milestones that we forget to see the beauty in what we have been given in our children. This is what I would want to know if I were a young mom again. If my babies were young again, this is the story I would want to hear.”

A dedicated advocate for those with cerebral palsy, Carol now takes every opportunity to speak and blog (http://theblessingcounter.blogspot.com/) to share the lessons she has learned. She also recently led a NRRTS Webinar and co-wrote a children’s book, Helix Holds a Sleepover, with Randal Betz, Jr. The book, available from Amazon February 12, 2020, is the second in a series about Helix, a tortoise without the use of his back legs who uses wheels to move around.

“Wade and I married one week after graduating from college and, four years into our marriage, he began medical school at the Pritzker School of Medicine, University of Chicago. I was working full time, working on a Master’s degree at night, and he was in school full time,” Carol said. “We were also living in an undergraduate student dorm serving as dorm parents. One year into this, for several reasons that made sense at the time, we decided it would be a great time to have a baby.” The couple learned a few weeks into their pregnancy that they were having three babies!

At the 19 ½ week mark in her pregnancy, Carol was put on bed rest in the hospital. “At 28 4/7 weeks, Benjamin, Claire, and Mason were born. They all cried and were whisked away to the NICU,” Carol said. “Benjamin was only in the NICU seven weeks and was home before his original due date. He was healthy, grew rapidly, and was alert. He interacted with everyone. It was amazing!” Because of the possibility of seizure activity, Claire was put on meds and was sleeping most of the time. “We thought she was probably going to have some residual effects,” Carol said. “Mason was tiny. He barely weighed two pounds and even though he had a hard time getting off of the ventilator, he did very well.”

Wade and Carol were still serving as dorm parents and brought the three newborns home to their dorm residence. “Who doesn’t want the responsibility of 3 newborns and 80 undergrads?” Carol said. “Once all three of the babies were home from the NICU, we thought the hard stuff was over; however, the challenges of life with CP were just beginning.”

While participating in a physical therapy study on pre-mature babies, Carol felt positive about her babies hitting expected milestones. “Benjamin was hitting them faster than the other two, and I was all puffed up thinking my firstborn was doing great,” Carol said. “When the physical therapist told me about three months into the study that she suspected that Benjamin had cerebral palsy, I was furious. I called Wade crying, saying that we were quitting the study, and I did not want the physical therapist back in my house. Fortunately, Wade was more rational than I, and we decided that we needed to stay in the study as a way to help other young families. My feelings were hurt that someone would say that my kid had cerebral palsy, but my feelings didn’t matter. At six months, Claire could sit up, and the boys could not.” Indeed, Benjamin and Mason both had cerebral palsy, a congenital disorder that affects movement and muscle tone.

“At a year, Mason started crawling, Claire started walking, and Benjamin still wasn’t rolling over,” Carol said. “I basically had a developmental preschool in my house and was aware that Claire was hitting milestones and Mason was hitting the same milestones but delayed. Benjamin was looking at the other two as though to say, ‘You know she’ll hold you in her lap. I don’t know why you are trying to move.’ However, at nine months, Benjamin started talking, and the other two were not. By the time he was a year old, Benjamin was putting words together, but while he excelled with verbal skills, his mobility was not there. He’s 22 years old now, and he still can’t roll over, but there are many things he can do. He’s very creative and his communication skills are awesome!”

“Around the age of three, Mason was using a walker and trying out crutches. We called the crutches ‘power sticks’ because we thought crutches was a terrible word for a little boy,” Carol said. “Benjamin was using his little walker, but it would take every ounce of energy he had to put one foot in front of the other. He would arrive at the entrance to preschool exhausted.” At this time, the physical therapist began to talk with the Shraders about a wheelchair for Benjamin. “I don’t think I was even polite when she first brought up the subject. All of my Southern charm went out the window,” Carol said. “I explained that we weren’t even going to use the ‘w’ word in front of the triplets. I thought the wheelchair would be limiting and would shut down the world for Benjamin. Putting my son in a wheelchair was, to me, a testimony that this was a long-term disability. I was not ready to accept that.”

A very young Benjamin, as has happened throughout his life, was able to communicate through his natural humor and help his mother gain new insight into his individual needs. “The PT had been helping Benjamin learn how to move from a stroller to a walker. After they worked and worked at this, finally Benjamin was in the walker, but he was in it backward,” Carol said. “The therapist asked Benjamin what he was going to do. My beautiful, smart little boy looked her and said, ‘I guess I’ll do the Hokey Pokey and turn myself around.’ We all laughed, but I had tears in my eyes. I realized at that moment that this child was smart and funny, and he had been going to church, to school, and to playdates exhausted because I was making him walk. His little body was tired.” After this experience, Carol relented, and, in preparation for kindergarten in the fall, Benjamin got a wheelchair. “So the kid that I thought would shut down if we put him in a wheelchair, now had the whole world open to him,” Carol said. “The wheelchair gave him freedom when I had thought it would remove freedom. Benjamin could now drive from point A to point B and still talk and talking was the most important thing to him!”

Skip forward to May 2019. That is the month that the now young adult Shrader triplets all graduated from their respective colleges within eight days of each other.

Claire graduated magna cum laude from Mississippi College in Clinton with a degree in Spanish,

a minor in English, and also completed prerequisites for Occupational Therapy school. She is currently a teacher’s aide at a school for children with complex medical needs in Philadelphia and will start OT school in the fall.

Mason graduated summa cum laude from Millsaps College in Jackson, Mississippi, with a double major in Anthropology and Classics (Greek and Latin) and a minor in Archeology. He is currently attending Texas Tech University in Lubbock, Texas, pursuing a graduate degree in Classical Archeology. He is also a teaching assistant. “Mason has been on archeological digs in Mexico and Spain. He’s living on his own, travels on his own and so far has done very well,” Carol said. “I don’t want to make it sound as though it is easy because he certainly has to make sure everything is in place to do what he wants to do.” Mason plans to get his Ph.D. and teach on the college level.

Benjamin graduated magna cum laude with a major in Theater with emphasis in Dramatic Writing and a minor in Political Science from Belhaven University in Jackson, Mississippi. He is currently volunteering with 2020 political campaigns and was an advisor on disability policy for the Beto O’Rourke campaign until it ended. “Benjamin loves to go to political rallies and likes to be the first one to ask a question,” Carol said. “He will wait on a decision about graduate school or employment until after the 2020 election.”

When the triplets were eight years old, the family of five welcomed one more into their circle. “Cate is an amazing, self-assured young lady,” Carol said. “We all consider her a true gift, a light to all of us. She has always been a champion for her brothers. When she was four years old, I, fortunately, caught her fist in time to prevent her from punching a little boy because he said her brother was weird. I had to reprimand her but wanted to hug her!” At this time, Cate is enjoying her teenage years, playing softball, and plans to be a NICU doctor.

Wade Shrader, M.D., husband of Carol and father of these four outstanding young people, is the Division Chief of Cerebral Palsy at Nemours A.I. DuPont Hospital for Children in Wilmington, Delaware. After the cerebral palsy diagnosis for Benjamin and Mason, Wade decided to pursue pediatric orthopedics and specialize in the disease. “Wade wanted to be the one that walked families through the experience of living with CP,” Carol said. “He relates so closely with his patients and their families; I am sure there are times when it is difficult to distinguish whether he is the doctor or the daddy.”

“Our lives aren’t perfect! Like other families, we’ve had tears and moments we wanted to run down the street screaming, and CP has definitely colored our world,” Carol said. “But we have had so many blessings! Throughout our life, our faith has remained important to us, and that helps us through difficult times and enables us to thoroughly appreciate the good times.”

“I’m so grateful that on that day when five-year-old Benjamin joked about the Hokey Pokey that I realized he had more to offer than putting two legs on the ground and walking. Benjamin’s dreams were not this limiting paradigm that I had – that walking would be the be-all, end-all for him,” Carol said. “Motor skills don’t define us. If I could convince our society of anything, it would be that we need to stop defining people by their motor skills, allow them to find what drives them and what motivates them, and do everything we can to encourage that.”

More from Carol!

Carol’s webinar, “The ‘W’ Word: One family’s story of finding hope and acceptance”is on-demand now. Click to order today.

Carol’s book

The second book in a series about Helix, a tortoise without the use of his back legs who uses wheels to move around, “Helix Rolls into a Sleepover” is not just a fun story about friends having a sleepover. It is a story of overcoming roadblocks, finding solutions, and introduces readers to what living life with a physical challenge actually looks like!

Click to order Carol’s book, “Helix Rolls into a Sleepover” 

Contact Carol
Carol may be reached at carolleighsmiles@me.com.

Carol is mother to young adult triplets, two of whom have Cerebral Palsy, and she also has a pre-teen daughter. In 2008, her then 11-year-old son created a blog — The Blessing Counter — and encouraged her to write. His willingness to have his story told so that even just one family could find hope in the journey of raising children with Cerebral Palsy inspires her still.

Carol is passionate about helping others find the joy in raising their own children with CP; about helping our children reach their full potential; and knocking down roadblocks that get in the way of just that. Her husband Wade is a pediatric orthopedic surgeon committed to the medical care of children with Cerebral Palsy. It is their family’s goal to remove helplessness and hopelessness from the diagnosis.

Carol holds a B.A. in Communication from Mississippi State University.