[With this year’s college search and acceptance period having come to a close, we thought it would be a good idea to plant the seeds for future planning if you have a teenager with cerebral palsy. There is no one better to do this than Carol Shrader, mother of four, two of whom have CP and have recently graduated from college. So this week we return to our educational Tuesday programming with a three part series written by guest blogger Carol Shrader.]
With two out of three of her triplets diagnosed with cerebral palsy, Carol Shrader discovered that setting her children up with an excellent education would take resolve and advocacy. Today, in the first installment of her heartwarming story, she reveals how she fought to get educators to take a positive approach to her triplets’ formative school years…
As the mother of triplets, I was a bit too busy to worry much about my children’s formal education — at least not until it was time for them to begin school.From the moment Benjamin, Mason, and Claire were born almost three months prematurely on April 19, 1997, my days overflowed with all manner of baby things. Worrying about the future was not on my to-do list.
All three of my babies began their extraordinary lives in the NICU. For the first few weeks I spent hours at the hospital watching as doctors monitored our tiny trio’s progress. Dad was a medical student and came as soon as classes were over to see their progress, and take his turn holding babies.
One by one, we were able to bring them home. Mason was the last one to leave the NICU. We put our little 4lb boy down between Claire and Benjamin in one bed and he immediately laughed out loud and grabbed hold of both of them. It was the sweetest moment.
Like most new mothers, those early days were filled with the mundane and the miraculous but we had a routine. I fed the first baby to wake up hungry – always Mason – and then Benjamin, and then would wake our little sleeping beauty, Claire, to eat. There were dozens of diapers to be changed, endless baths, clothes to coordinate. Once all three were napping, I might have a minute to shower and dress before starting the mothering marathon all over again (might being the key word). But no matter how exhausted, or unkempt I felt, simply walking into their nursery to see three little heads pop up to smile at me was enough to warm my heart and make me smile too.
Although initially, Claire presented some healthcare concerns in the NICU, she was ultimately cleared of any concerns. She became the ruler against which we judged the milestones Benjamin and Mason seemed to be missing. Ultimately, both boys would be diagnosed with cerebral palsy.
Right from the NICU, the triplets were participants in a study on premature babies and were followed closely by physical therapists.
Early on Benjamin was off the chart for motor skills. At four months – four weeks past his due date – he was holding himself up. When a visiting physical therapist announced that his impressive progress could be due to spasticity from CP, I almost quit the study. Her words felt negative and were frankly terrifying.
However, she was right. Soon, Benjamin was clearly not meeting milestones. When Claire and Mason began to roll over, Benjamin could not. Then as Claire progressed to sitting up, Mason started to lag. He couldn’t sit without my help.
As their first birthday approached, our pediatrician recommended we see a developmental pediatrician. And it was this doctor who delivered the diagnosis with a jarring lack of empathy. He’d barely entered the room when he announced, “Of course your boys have CP; what did you think I was going to say today?”
Packing up to leave, I reeled with feelings of hurt, anger, and something else. It was the overwhelming conviction that this doctor had no idea how amazing my boys were going to be. I reeled with the knowledge that I would fight for them with everything I had, for as long as necessary.
Benjamin was diagnosed with spastic quadriplegia affecting all four of his limbs. He uses a power wheelchair. Mason was diagnosed with spastic diplegia. He uses forearm crutches – or what we call “power sticks” – to ambulate. While physically more independent than his brother, he has a longer list of medical issues.
When the triplets were babies, my husband Wade was in the first year of his orthopedic surgical training. His hours were insane, and his sleep schedule was worse than mine. His free time was limited and his worry over the multitude of hurdles and unknowns for our boys dominated that time. And perhaps because he was in his 128th year of higher education (not really, but it felt that way) their college years were what seemed to be of most concern. We vowed to give them every opportunity in life.By the time we approached the triplets’ fifth birthday, I had begun to do the work to start their education. I took my three on a tour of an acclaimed private school in our then hometown of Rochester, Minnesota. As we sat across the desk from the headmaster, I asked him if he could accommodate my boys. Most of my friends’ children attended, and I was anxious to hear if this could be the place for us.
“Mrs. Shrader, this is what we can do,” he began. “We’ll enroll your children on a three-month probationary period. If in three months it proves too hard on my teachers, we will have to ask you to find somewhere else for them to attend school.”
I was not quite five years into this Mama Bear role, but my conviction was growing. Looking him in the eye, I cleared my throat.
“Really?” I remarked. “And you think starting kindergarten, the beginning of their formal education, on PROBATION is the best way to set them up for success? I cannot even imagine the stress that would place on them and us as a family. No thank you.”
I left irritated but not heartbroken. I had heard of a choice school in town that also had high academic acclaim. I made an appointment with the principal there.
This time, after I had spoken warmly about my amazing children, the principal began to explain the school admittance policy – a blind-lottery basis. For triplets, if one name was drawn, all three would be accepted. I liked those odds, until she expressed concern about how hard her teachers would have to work to accommodate my differently-abled children. In a frustrating déjà vu moment, I heard how her teachers might need to be protected from my babies. It stung. I walked out knowing that even though the odds were in our favor – we had THREE entries in the lottery after all – my children would NOT be selected in this draw. I was right.
Determined that we would find a place where my wonderful children would all be wanted and able to thrive, I took my dynamic trio to our local public school for a visit.
We were met by a warm and smiling principal who took us on an enthusiastic tour, talking about the teachers and different activities. She didn’t treat my sons like they were anything but future students. I knew this school was the one. We didn’t need special treatment; we just needed to be welcomed.Dropping my children off on their first day was emotional. Thankfully they were super excited, and I trusted they would be OK. Kindergarten and first grade would not be without challenges, but we never felt our presence was a burden or that having our triplets in class was an undue weight for the teaching staff.
As the years passed, we relocated with Wade’s job, spending stints in Dallas, TX, and Phoenix, AZ.
By fifth grade, things were getting harder. I knew Benjamin was bright, but despite having great teachers, some could not work out how to balance his sharp mind with the physical limitations of his body, and I spent a lot of time at the school. His six-grade school was overcrowded with 35 students pushing their desks around his wheelchair after he drove into the room. I worried about accessibility and what would happen in an emergency.
I took a leap of faith in the middle of that school year and decided to homeschool the triplets and their younger sister Cate. We got into our own little groove, studying during the hours that worked for us and taking fun field trips and outings.
Then, before we knew it, the triplets were 15. The moment my husband had been contemplating in his mind for many years had come. It was time to navigate college choices and campuses.
As we began selecting choices, the memories, emotions, and feelings of abject rejection during those first kindergarten visits resurfaced in my mind. I knew from that experience all those years prior we needed colleges with heart.
College would look different for each of my trio, but I am pleased to report they all found their independence, navigated hurdles, and flourished.