[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.
The Shrader triplets all together in a baby swing.
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.
Dr. Wade Shrader with his triplets at Disney in 2002.
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.
The Shrader Triplets head off to pre-school two with their walkers but all three with matching backpacks.
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.
This series will continue on June 8th. You can read Carol’s guide to preparing for college in our Transitioning to Adulthood section.
CPRN’s progress as a Learning Health Network is published!
/4 Comments/in Latest, News, Quality Improvement, Research /by PaulThe Cerebral Palsy Research Network’s progress as a Learning Health Network (LHN) has been published in the Journal for Pediatric Rehabilitation Medicine this past week.
Primary author Amy Bailes, PT, PhD, published a self-assessment from leaders in the Cerebral Palsy Research Network using a tool developed by Cincinnati Children’s Hospital called the Network Maturity Grid (NMG).[1] The NMG is used to detail the maturation of necessary infrastructure and processes to create learning networks (LNs).
Bailes’ publication, the fourth since the CP Research Network’s inception six years ago, provides a glimpse into future directions for the network’s development. It details a standardizing scoring rubric used to assess progress across six domains including:
The results were tabulated and graphed to provide insights into progress in each domain and areas for improvement.
The CP Research Network’s leadership team amalgamated this analysis to identify key investments that will improve our network maturity over the next five years. Moving forward, these investments will be centered on leadership development, financial sustainability, quality improvement training, the capture of patient-reported outcomes, and enhancing the quality of data collection.
The cover of the Pediatric Rehabilitation Medicine.
The Network will incorporate the NMG tool into annual planning. Investments will be measured over the course of a five-year strategic plan for 2021-2025.
Members of the professional and academic community can access the article online with a Journal subscription. Community members may download the original article (prior to revisions required by the editors) from our website.
CP Stories: Tanya Sheckley and UP Academy
/in Children and Families, CP Daily Living, CP Stories, Latest /by Charlotte WardMeet the CP mom who overcame her grief to build an incredible inclusive school in her daughter’s memory
Mom, Inclusive School Creator
Tanya Sheckley’s vision of creating an inclusive school empowering ALL children was almost shattered with the untimely death of her beloved daughter Eliza. Yet, the resilient mother channeled her grief into creating a school to embody everything Eliza taught her about ableism, education, and empathy.
Like many CP parents, Tanya Sheckley worked hard to research education options for her daughter Eliza, who was born with spastic quadriplegia cerebral palsy.
As her daughter’s kindergarten years approached, Tanya, who lives in Mountain View, California, was dismayed to learn that many schools provided the bare minimum when it came to educating children with disabilities.
Tanya Sheckley with her daughter Eliza.
“She learned to read, do math, and was curious about science,” recalls Tanya. “Kids didn’t see her as ‘different.’ She fit in, she was happy and became one of the most popular kids at school. She did well academically with accommodation for the way she learned. We had gotten lucky.”
By first grade, things were changing. Despite Eliza’s stellar kindergarten record, Tanya and her husband Chris were frustrated by the recommendation to put their bright and inquisitive daughter into a modified curriculum for children with different abilities. The one-size-fits-all model meant the work would be made easier, and Eliza would not be expected to learn the same material as her able-bodied classmates.
Under the Individuals With Disabilities Education Act (IDEA), public schools are required to provide access to education. Unfortunately, in a system built to educate the masses, children who are “different” often aren’t encouraged to excel in the same way as their peers.
“It felt like a barrier to providing real opportunity,” says Tanya. “Just because a student doesn’t have an effective and consistent method of expressing knowledge doesn’t mean the student doesn’t possess the knowledge. All students should be challenged in areas of strengths and supported in areas of weakness so they leave school with the knowledge and skills to be successful and independent in the world.”
Tanya, who had previously worked in business and taught as a yoga and ski instructor, became frustrated that no one school could support Eliza and her younger siblings Breda and Keller in their individual strengths. Why couldn’t there be an inclusive elementary school set up for all children to thrive?
In 2015, she decided to create an inclusive school for kids with disabilities and their able-bodied siblings.
Students decorate the wall at UP Academy.
Then the unthinkable happened. Eliza passed away in her sleep in March of 2016.
“It was completely unexpected,” says Tanya. “Eliza was fine and was having fun but one Friday she came home from school early because she was tired and not feeling well. I laid her down for a nap and told her I loved her. Our nanny was there to care for all three of our children so I went to the grocery store.
“When I checked on Eliza later she wasn’t breathing and her lips were blue. We did CPR until help arrived and Eliza was transported to the hospital where they did all they could. But there was nothing more the doctors could do. Walking out and leaving her behind was one of the hardest things I’ve done in my life.”
Despite her grief, Tanya could not give up on the school.
“I needed to find a way for the grief to serve me,” she says. “My family needed me to still be a mother and wife, and Eliza had taught me about ableism, education, and empathy. I had learned too much to walk away. I could lay in bed all day or use what I have learned to help others. There were still many families of children with disabilities who couldn’t find a fit for their children in the education system. To honor Eliza and to help them, I needed to work to create change.”
For the next two years, Tanya continued to build the school and welcomed her first group of students in 2018. There were plenty of challenges. The school’s first building lease fell through but Tanya persuaded a local church to let her use their rooms for a time. Eventually another location was found and the school has had a permanent home in San Mateo for the past three years.
With 20 students enrolled in UP Academy, Tanya is considering opening another location next year in the San Francisco Bay area. It is her vision to encourage other parents and educators to launch their own schools with a course she created, the Rebel Educator Accelerator.
“When we all work together, we can be more creative and achieve more,” she says. “Our vision for UP Academy is to build a method of education that can be shared and replicated. By teaching, training and sharing our curriculum with other schools we can serve more students in new and innovative ways.”
There is not a day that passes without Tanya thinking about her daughter who continues to inspire her.
“Eliza was sweet and kind,” she says. “She loved people and spending time with her friends. She was stubborn and wanted things to be done her way. She made decisions quickly and stood by them. We still have a dish we call Eliza Guacamole, which is smashed avocado and banana.
“It’s important to remember that despite any disability, all kids want to play, learn and make friends. Everyone needs a place to belong. Inclusivity is life, it is love, it is understanding and empathy, it is the thing that allows us to learn and work and play together.”
[ends]
A step forward in Standardizing Patient Reported Outcomes
/in Cerebral Palsy Registry, Children and Families, CPRN Studies, Education, Latest /by PaulHospitals and clinicians in the Cerebral Palsy Research Network will be able to track, learn from, and compare outcomes for their patient populations thanks to our selection of standardized patient outcome measures. The CP Research Network has collaborated with Dr. Unni Narayanan, the subject of our recent CP Stories series, at the Hospital for Sick Children in Toronto, Canada, to standardize a validated set of patient-reported outcome measures (PROMs) across the network. Working closely with Nationwide Children’s Hospital in Columbus Ohio and Dr. Narayanan’s PRIORITY-BASED SCALES FOR CHILDREN’S OUTCOMES – RESEARCH & EVALUATION (PSCORE) Program, the CP Research Network has released electronic versions of two PROMs to collate patient information across sites in our network.
The Gait Outcomes Assessment List (GOAL) and the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) will ensure CP families can provide information and communicate their needs to clinicians in patient facing portals like Epic’s MyChart. On a wider scale this submitted data will also help improve treatment more widely in the CP community. Shared decision-making helps balance the input of doctors and experts with the priorities and preferences of patients and their families.
The patient priority framework from PSCORE shows an interrelationship among patient priorities, interventions and outcomes for living with cerebral palsy.
Dr. Narayanan has been funded by the Canadian Institute for Health Research (CIHR) to study the impact of these tools in improving shared decision making.
Patient families can use these tools today in MyCP – the CP Research Network’s personalized platform for cerebral palsy resources. The CPCHILD and GOAL Questionnaires are available in the MyCP Community Registry that can be taken annually to track a child’s progress across numerous domains like activities of daily living, mobility or participation. Once a family takes the survey, they can download a PDF of their results which includes their important goals, and bring these results to an appointment with their CP focused physician or therapy team.
The CP Research Network will enhance these tools over time to provide summary reports that will include the scores and list of important goals to better support shared decision making. Parents of children under the age of 18 can sign up for MyCP and take these surveys now.
What is a Learning Health Network – and why should you care?
/10 Comments/in Adults, Children and Families, Education, Latest, Quality Improvement /by PaulAmy Bailes, PT, PhD
On Monday, June 21, at 8 pm ET, we invite you to tune in for our next MyCP Webinar, to discover why the Cerebral Palsy Research Network is working to become a learning health network and how doing so will enhance our efforts to improve health outcomes.
The webinar will be presented by Amy Bailes PT PhD, leader of the CP Research Network’s quality improvement initiatives. She will outline how learning networks – that often form a registry at their core – can quickly gather and share data that rapidly improve treatment experiences for patients.
During the 40 minute webinar, Dr. Bailes, a physical therapist and researcher at Cincinnati Children’s Hospital, will also outline the CP Research Network’s efforts to become a learning health network and how that ties in to clinical initiatives we already have underway.
“Taking the most effective practices from the best CP centers across the nation and spreading those practices in a systematic fashion, will have profound impact on the health of people with CP,” says Dr. Bailes. “This is how we should be caring for all people with CP.”
Learning health networks seek to improve outcomes through a combination of research and quality improvement (QI) initiatives. While some research studies can take years to complete and can require more time to affect a change in practice, QI initiatives can drive systemic change and bring results as early as six months.
“While QI cannot answer fundamental questions about treatment effectiveness or discover new therapeutic interventions, it can be used to dramatically improve health outcomes very rapidly,” says Paul Gross, President and Chief Executive Officer of CP Research Network.
Members of the community, clinicians and researchers interested in learning more about the CP Research Network’s drive to become a learning health network can tune in to the June 21 webinar by registering on the sidebar at the top (or on the MyCP Webinar Registration page).
Preparing for College – Part 3
/in Adults, Children and Families, CP Daily Living, CP Stories, Education, Latest /by PaulIn the third installment of her inspiring story, CP and triplet mom Carol Shrader shares how she watched her son Benjamin, who has spastic quadriplegia, flourish during his college years…
The night before my son Benjamin began his freshman year, I could not sleep. I worried all night long.
“I know, right?” my husband Wade consoled, observing my nervous disposition. “I have been thinking about this day for 18 years!”
Benjamin, our triplet with spastic quadriplegia, lived at home with us and his younger sister Cate for the first three years of college, but getting around campus independently was still a big deal.
He was only a week and a half into the first semester when we hit our first snag. Benjamin was heading across campus in his wheelchair with a fellow student and following her lead. When she pointed at the curb where they needed to cross the street and asked him if he could make it, he assumed it was flat. Unfortunately, his depth-perception issues prevented him from knowing for sure. It wasn’t flat. He drove right off the curb.
His professor called me, and I rushed to the campus to find my shaken son, clearly in pain and surrounded by college kids, security, and the head of the theatre department. The footplates on his wheelchair were the only thing that prevented him from landing on his face. His feet still took the brunt of the 300-pound weight of him and his wheelchair.
I have never wanted to jerk back control of a situation more – and it was clear I needed to.
Quickly rearranging my schedule, I ensured I could be on campus the rest of the school year. I assisted between classes, shuttling Benjamin between the upper campus and the lower campus where theatre classes were held. I brought him lunch. I took care of his toileting needs. I brought him back to campus for late night events and drove him wherever he needed to go, ensuring he could fulfill his college kid schedule.
At the same time, I worked to find ways to help him achieve independence. I began by phoning the ADA compliance officer and asking for the sidewalks to be revamped on campus. They needed ramps so Benjamin could navigate them safely. When the ramps were consistently blocked by mail delivery vehicles, maintenance, and even professors, I called the dean.
With problems still arising, I called the university president and, in my sweetest Mama Bear voice, told him that Benjamin could not succeed at his college if he could not ever get into the classrooms. A few weeks later, every ramp on campus had been repainted with the words “DO NOT BLOCK” in bold letters.
Meanwhile, Benjamin worked with the ADA office to secure a scribe for tests. The professors assigned a student to copy their notes for him. I was his scribe at home for each assignment. We even burned the midnight oil together, working on a 24-hour theatre assignment to write a play overnight so his team could memorize lines and perform them the next day. Poor Benjamin had to dictate to a scribe who fell asleep between lines.
The triplet’s freshman year continued to be a long year of learning for all of us. Mason was doing well, living a relatively independent life on campus at his college. Claire, my triplet without cerebral palsy, had moved onto campus about half an hour from our home. Throughout her four years, she called, texted, and sent video messages. Sometimes she would share a funny story about life on campus; sometimes, she just needed her mom and emotional support.
When April arrived, I noticed a shift in Benjamin. During a course selection meeting with his advisor, he took an assertive new tone.
“I need to arrange my schedule so that I am at the upper campus for three days a week and the theatre campus for two days a week or vice versa,” he said. “I need for my mom to be able to leave me on campus.”
By the time Benjamin began his sophomore year, he had a personal care team trained to assist him. Having a personal care attendant meant he could be independent of me and could organize his study time, extra-curricular activities, and classes the way he wanted. By his senior year, Benjamin felt confident to move into a newly built dorm with accessible units. It was an enormous step.
Initially, Benjamin didn’t love staying in the dorm, but he grew to enjoy his independence. It was empowering for him to be in charge of his schedule, meals, and life. The accessible dorm and the ultimate willingness of the college administration gave him this opportunity. He had a great college experience participating in theatrical productions as both an actor and a dramaturg and was elected to homecoming court twice in four years.
Benjamin Shrader at a college graduation celebration.
Benjamin graduated Magna Cum Laude with a major in dramatic writing and a minor in political science. When he presented his final script as a read-through performance for his senior project, every single one of his team of PCAs was in the audience because they were so invested in him.
His brother Mason was recently accepted to his second Master’s program in Anthropology, focusing on Bio Archaeology at Texas Tech. Claire is currently in her second semester of Occupational Therapy School at Thomas Jefferson University in Philadelphia.
Claire enjoyed a semester studying abroad in Argentina and founded sibling workshops for the brothers and sisters of differently-abled children worldwide. When she got an internship with an autism foundation, she discovered they had nothing for siblings, so she created a program. She went on to graduate Magna Cum Laude with a major in Spanish, a minor in English, and all her pre-occupational therapy courses.
When I reflect on the triplets’ journey, I would like to call the educators who didn’t want to invest in their potential. I want them to know that those little preschoolers they thought would place an undue burden on their teachers graduated with honors – lots and lots of honors.
I would like to tell them that when Benjamin rolled across the stage with his diploma, the faculty were the first to stand in what turned into a standing ovation throughout the graduation hall. Those faculty did not stand because Benjamin had been a burden on their teaching. They stood because he worked hard in their classes, he engaged on a day-to-day basis, he encouraged his fellow students, and set the bar high for their performance.
I would like to show them photos of Mason digging in the ancient acropolis in Majorca and receiving his hood for his thesis. I want them to read his undergraduate thesis on disability in the ancient world. I want them to know that his honors project won the Phi Beta Kappa award for best honors project at his school. They missed the chance to list this amazing Summa Cum Laude graduate and all of his accolades among their alumni.
The Shrader children — triplets to the right with sister Cate on the left.
They also don’t get to brag about our soon-to-be Occupational Therapist Claire who is already changing the world for young people with CP and their families.
College looked different for each of my three. But they each found the school that matched their needs, the path that worked for their personal dreams, and made it not just a possibility but a reality.
College IS possible for young people with CP. They can make their mark and change the world. They can recolor the way society views students with CP. They can affect change. They CAN succeed.
CP Stories: Hospital for Sick Children Surgeon Unni Narayanan
/1 Comment/in CP Stories, Latest /by Charlotte WardUnni Narayanan, MBBS, MSc, FRCS(C)
As one of the top pediatric orthopedic surgeons in his field, Unni Narayanan is passionate about improving mobility and reducing pain for the young patients in his care, many of whom are children with cerebral palsy.
But his dedication doesn’t end there. With a background in clinical epidemiology, the renowned doctor is also carrying out research to identify which treatments work best and understand and define the priorities of patients and their parents.
“I see, treat, and operate on children with CP every week, and a major focus of my work is dedicated to children with CP – it’s almost a subspecialty area in pediatric orthopedics,” says Narayanan. “CP children have a variety of musculoskeletal impairments which can impact how they move or walk. At the more severe end, you have children in wheelchairs and with musculoskeletal impairments that can cause them considerable pain. They can need all kinds of operations to optimize their efficiency. My clinical research is focused on understanding patient priorities and using that to improve outcomes.”
Narayanan, who completed his residency in orthopaedic surgery at the University of Minnesota and his fellowship in pediatric orthopaedics at The Hospital for Sick Children (Sickkids), is a senior scientist at the Sickkids Research Institute, and has spent two decades working in the field. He says his background in clinical epidemiology led him to focus on improving outcomes through clinical research and surgery.
His PSCORE [Priority-Based Scales For Children’s Outcomes – Research & Evaluation] Program at SickKids invites parents and patients to share what is important to them so clinicians can make judgments about whether treatments make a difference.
“We compile evidence to support whether interventions improve the lives of kids and carry out clinical trials to see which treatments work and which work better than others,” he explains. “A major focus is developing measures of those outcomes.”
Narayanan has been involved with the CP Research Network for many years and is a member of our executive board. He was on a sabbatical in the United Kingdom when he first heard about a large research project organized by the network and has contributed ever since.
“One of the network’s first major initiatives was to bring together clinicians from different subspecialty groups and charge them to work together to develop the core outcomes,” he recalls. “I led the orthopedic part of that effort and worked with my colleagues in other disciplines to bring elements together. It was the start of a clinical registry across North America. I continue to be involved in that effort.”
He cites CPRN.org as an essential resource for ensuring multiple institutions can collaborate to use electronic health records to collect data in a structured and standardized way.
“Integrating research into clinical care is the way to go,” he says. “You are collecting data not just in one but in many institutions, which allows you to collate a higher quality of data efficiently. That’s the power a network like CPRN can facilitate.”
As he contemplates what the future of CP treatment looks like, Narayanan says he would like to see advances in preventing the condition before it can occur and that research requires time and resources.
“CP, unfortunately, is permanent. There is no cure. The damage to the brain while developing is irreversible. The Holy grail would be to reverse that,” he says. “The biggest advances being made are the substantial efforts to prevent the damage in the first place. For example, looking at babies that are at high risk and understanding how the brain works. They are the biggest advances. As an orthopedic surgeon, that is far from what I do. I am downstream of the consequences. Advances in prevention require a more sophisticated understanding of the causes.
“Having time dedicated for research is critical. As a surgeon, clinical responsibilities creep into that time. We also rely on grant money. Those dollars are hard to come by. Nether-the-less, I am very fortunate to be where I am. I have an institution that embraces research and values it.”
There is one thing Narayanan believes we could all do right now to improve the quality of life for people with CP – focus on intersectionality in our daily lives.
“While we wait for medical advances, there is so much more society can do to allow people with disabilities to live fuller lives without needing to fix them,” he says. “It’s not so much treating the child but treating society – empowering people with disabilities to allow them to live fuller lives. By adapting the environment to help people with disabilities get around more easily, you create more comfortable, fuller lives for them. You don’t need sophisticated research to do that.”
Preparing for College – Part 2
/in Adults, Children and Families, CP Daily Living, CP Stories, Education, Latest /by Paul[In the second installment of her moving three-part story, triplet and CP mom Carol Shrader describes her son Mason’s experience of finding independence as he left home for college for the very first time.]
When you’re a mama bear who has raised four children with very different needs, it’s instinctive to be a helicopter parent. But as I stood on the sidelines watching a college administrator empower my son Mason, I knew the time had come to take a backseat.
“Mason, I’ve heard what your mom thinks you need,” he remarked. “What support do YOU think you need to be successful?”
He may not have made my list of favorite people right then but, as Mason replied with his thoughts, I recognized he was encouraging my son to take charge and have a voice in his own support structure. He was also empowering me to hand over the controls. I could tell by Mason’s face that he was happy. I knew this was the place for him.
Mason was born with spastic diplegic CP, and while he is physically more independent than his brother Benjamin, who has spastic quadriplegia, he has a longer list of medical issues.
When my triplets’ college years arrived, our first hurdle was to find the proper support for our sons to sit for their SATs. I spent hours finding a test site that provided the accessible space we needed for the boys and would allow for scribes to help them write their answers. I filled out multiple forms to ensure the scribes would be permitted and assembled the required medical documentation.
With all the approvals in place, the first test date approached. But even with the best-laid plans, there were obstacles we could not anticipate. My trio was as prepared as I could help them be. They were ready. Then the school called the day before the exam. The scribes had decided they didn’t want to work that Saturday, and the school could not replace them. They would “try” to hire someone for the next test date. Claire took it that day, but Benjamin and Mason had to reschedule. They ended up taking the SAT twice and gained good scores. The relief would carry us through the college application process and all that it entailed.
Our college wish list consisted of schools with excellent access, a manageable student population, and programs of interest. We visited campuses all over the country. We toured schools in Philadelphia, Minneapolis, Chicago, and their more expansive geographic areas, and checked out small liberal arts colleges in California, Mississippi, and Arizona.
We saw great colleges with insufficient access and colleges with excellent access but seemingly a million students. In the end, all three of my triplets chose small liberal arts colleges that offered them an intimate learning environment.
Once Mason had secured his favorite college choice, I helped him put everything we thought he needed in place to live independently. While his campus was only 15 miles from our home, we had made a cross-country move just a few weeks before college started. We had to find Mason doctors to manage his cerebral palsy and his related high blood pressure caused by problems with one of his kidneys, as well as his ulcerative colitis. I had equipped him to talk to doctors himself, but I had failed to teach him to talk to pharmacists. We would have more than one tense mother and son discussion about refilling meds BEFORE they ran out. Equipping him to call in his prescription refills in time and pick them up before he missed a dose was a skill I had overlooked as I prepped him for college. The truth is you can’t predict everything, and you will always be problem-solving on the go.
Mason navigated campus with an electric scooter and his power sticks. Like most moms sending her first born to college, I worried a lot and followed all the campus social media, hoping to get a glimpse of him without nagging him to send me photos.
I was nervous about the electric scooter he took to navigate campus. What if it had negative connotations for him? There was no need to worry. It didn’t. When he joined a fraternity, the president made a point of climbing on the back of Mason’s scooter with the official flag. “We’re going in last!” the president enthused. Staff and students together nicknamed that scooter and were disappointed when rain the weekend of graduation prevented “Bocephus” from attending the swiftly organized indoor ceremony.
Mason threw himself into campus life, serving his fellow students as a resident assistant in the dorms. He was elected student body senator.
When Mason called home his needs varied from emotional to physical, to help with an essential decision like which bow tie matched which shirt. My personal favorite phone call was when he needed me to stop by campus to button the little tiny buttons on his dress shirt.
Mason’s college was not perfect from an accessibility standpoint – the sidewalks were in a deteriorated state, and navigating them in the scooter could be hazardous. The beautiful old buildings had elevators that broke down and didn’t work almost as often as they worked, but the administrators were committed to Mason and his needs.
He graduated Summa Cum Laude in four years with a major in Classics (Greek and Latin), a major in Anthropology, and a minor in Archaeology. His picture hangs on the wall of the student center as one of just four students in his graduating class chosen for the Hall of Fame. Mason earned this accolade because he took the heart his school poured into him and gave it back with dedication.
Today, Mason is finishing up a Master’s in Classics at Texas Tech University. Before the pandemic, he was living alone, on campus a thousand miles from home.
Whatever the problem, Mason has taken it in his stride. Despite living independently, fine motor skills are challenging, but we work out the solutions.
When he started to look like a hairy mountain man with unkempt hair, beard, and nails, we organized a reconnaissance day sending him on Uber rides around the city to find somewhere he could get his hair and beard cut plus a manicure and pedicure. Now Mason knows exactly which strip mall can serve all those needs and heads there every six weeks.
Mason has CP which has thrown some curveballs his way over the course of his life. But when he lectures, cerebral palsy is the last thing on his students’ minds. Recently, I had the opportunity to speak alongside Mason to a class of students working on their masters in special education. We were in fact, lecturing about CP and the impact these students would have as teachers. But when Mason started speaking about his archaeological research, the entire discussion shifted and the previously quiet class began raising their hands to ask questions. Even they, who were there specifically to discuss CP, had completely forgotten that Mason is affected by this challenge.
I can’t help beaming with pride.
(For more information on preparing for college, visit this resource developed by Carol Shrader from her experiences.)
CP Research Network Launches New Fitness Program
/2 Comments/in Adults, Latest, Must See, News, Wellbeing /by PaulWe are excited to announce a new wellbeing program in partnership with Staying Driven and Steph “the Hammer” Roach! Beginning Tuesday, June 8th at 7 pm ET, Staying Driven coaches will offer virtual adaptive fitness classes exclusively to registered MyCP community members!
The CP Research Network has arranged for MyCP members to be able to attend up to two classes per week, free of charge!
To be eligible, you need to complete these registration requirements:
Are you ready? Go sign up!
How it works: MyCP members who follow the steps above will receive an email from the CP Research Network with the link to the Zoom Registration for the fitness class with Staying Driven. Steph, or one of her other coaches, will run the class. The participant uses the link to register for each class.
When? Saturdays at noon ET/9 am PT or Tuesdays at 7 pm ET/4 pm PT
What should you bring? A water bottle, a hand towel and a positive attitude.
What about resistance or weights? Classes are adapted for people of all ages and abilities. Steph will encourage you to gather items from around your house or apartment to participate. If you have a personal care attendant or a caregiver that wants to be involved, they are welcome to attend to assist.
What if I cannot make these times or I want to work out more often? The MyCP Fitness program only supports these two days and times. Staying Driven has monthly memberships that will allow you access to all of the regular programming if you are interested.
Do I need a note from my doctor? A doctor’s approval is up to your discretion. Think of it as joining a gym — the gym doesn’t require a note from the doctor, but the waiver makes clear that you are responsible for making the appropriate health choices for yourself.
Join us for this new and exciting program made possible through your generous donations to the CP Research Network!
Preparing for college — a three part series
/in Children and Families, Education, Latest /by Carol Shrader[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.
The Shrader triplets all together in a baby swing.
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.
Dr. Wade Shrader with his triplets at Disney in 2002.
“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.
The Shrader Triplets head off to pre-school two with their walkers but all three with matching backpacks.
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.
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.
This series will continue on June 8th. You can read Carol’s guide to preparing for college in our Transitioning to Adulthood section.
A Labor of Love: Our New Website
/in Education, Latest, News, Research, Wellbeing /by PaulThe new CP Research Network website on a mobile device
The Cerebral Palsy Research Network will launch its new website – combining all four of its web properties – this Monday, May 24! Our extended community will benefit from this single rich repository of information, resources, research and collaborative tools. In order to learn how to maximize the benefits of our new site, it will be the subject of our next MyCP Webinar on May 26 at 8 pm ET.
Founders Paul Gross and Michele Shusterman will provide background information on the creation of merged site, talk about the design principles and walk attendees through the new user experience, including plans for future enhancements to MyCP.
In January we announced the merger of CP NOW, including its toolkit, wellbeing resources and CP Daily Living blog, with CPRN and its MyCP community engagement site. Carefully sorting how to organize our four web properties was a key step to bringing together CP NOW and the CP Research Network. The new website, found at https://cprn.org, focuses on the four cornerstones of our mission:
During this webinar we will demonstrate how to get the most value out of the network and MyCP, including how you can contribute to improving outcomes for people with CP.
Please join us! You can register here: https://cprn.org/mycp-webinar-series/