A tag to put things on the home page.

Three Polaroid photos labeled ‘Benjamin’, ‘Mason’, and ‘Claire’ of premature triplets with nasal cannulas in their incubators.

Preparing for college — a three part series

Carol Shrader, mother of four, two of whom have cerebral palsy.

[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.

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 Disneyland in 2002.

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.

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.

The triplets were joined by a younger sister in 2006.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.

A small preview image of the CP Research Network’s website linking to blog post ‘A Labor of Love: Our New Website’.

A Labor of Love: Our New Website

A screen capture of the CP Research Network’s website as it displays on a mobile device

A screen capture of the CP Research Network’s website as it displays 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:

  • Engaging the community in research and sharing their lived experiences;
  • Research and implementation of evidence-based health care for cerebral palsy;
  • Educating community members of all ages with content reviewed by experts in CP care;
  • Wellbeing programs for optimizing life-long health.

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/

A small preview image of a virtual meeting linking to blog post ‘Annual Conference Sparks Innovation and New Research Ideas’.

Annual Conference Sparks Innovation and New Research Ideas

Forty-five clinicians from 28 academic medical centers came together on Zoom last month for the Cerebral Palsy Research Network’s fourth annual investigator conference.

Marc Randolph, cofounder and original CEO of Netflix

The two-day online gathering featured keynote speaker Marc Randolph, the co-founder and first CEO of Netflix, who shared pearls of wisdom on decision-making and growth to our diverse audience of research leaders.

Participants, including clinicians from the National Institutes of Health, discussed a range of network studies, including the relevance of genetics in cerebral palsy diagnosis, and brainstormed potential new areas in dystonia research and building capacity to care for adults with CP. 

The meeting also enabled the CPRN team to define goals for an updated 2021-2025 strategic plan, including expanding leadership systems, ensuring financial sustainability, engaging community members, and strengthening research and quality improvement projects. 

“This year, we were able to make extensive use of breakout rooms for discussions and collaborations among smaller groups of investigators,” says CPRN President and Chief Executive Officer Paul Gross. “We were fortunate to have support from the Weinberg Family Center for Cerebral Palsy, making for smooth logistics.”  

Moving to a virtual format proved to be a successful venture with the format and progress of CPRN’s 2021 conference receiving praise from the attendees.

“It was great,” wrote Dr. Ed Hurvitz, chair of Physical Medicine and Rehabilitation at the University of Michigan. “The best Zoom meeting of the year for content, for career development, and being able to connect a bit with friends old and new.”

Paralympian, advocate, and community advisor Duncan Wyeth, also in attendance, remarked: “I have acquired more knowledge and insight over two half-days about my disability and potential system mechanisms to address that disability than at any other time in my life. This meeting gives me great hope and expectations for the countless individuals who will know an enhanced quality of life because of this learning network.” 

Thank you to everyone who gave their time for this important conference. It has set us on an excellent trajectory for 2021 and beyond. We greatly appreciate the commitment of our dedicated investigator team and all their hard work advancing the care of people with CP.

Kristie Bjornson, PT, PhD. A smiling woman with blond hair, wearing a black vest over maroon turtleneck in a hospital hallway.

CP Stories: Researcher and PT Kristie Bjornson

“Physical Therapists need to know the tools to use to help children with CP”Kristie Bjornson, PT, PhD

Family ties and adversity sent physical therapist and well-established researcher Kristie Bjornson on her path to improving strength training for children with cerebral palsy.

Kristie Bjornson was in middle school when her older brother Keith endured a severe spinal cord injury after a diving accident. Helping him ignited her initial passion for physical therapy.

But it was her brother’s wife, Sherry, who has Spastic Diplegia CP, who opened her eyes to the challenges of the CP community.  Bjornson was drawn to learn more, and during her PT training in St. Paul, Minnesota, she began an internship working with children with cerebral palsy. It was the start of a 20-year career working with children with CP.

In 2000, Bjornson decided to go back to graduate school to expand her knowledge further.

“I realized physical therapists didn’t have enough research to know what tools to use in the toolbox to help children with CP,” she told CPRN. “I am a much more evidence-based clinician today. Presently, I have National Institutes for Health funding for three trials exploring varying treatments to help children with CP walk and move about the world easier.”

Bjornson is based at Seattle Children’s Hospital & Research Institute, where she is Associate Professor of Pediatrics and Rehabilitation Medicine, appointed by the University of Washington. She spends one day a week working as a physical therapist, and the other four days are spent on her research projects at the Research Institute.

The goal of her research is to maximize how efficiently a person with CP can walk. Her first project, a two-year study on orthotics, focused on researching the best orthotics and shoe combinations. The second project is a five-year study, a home-based program for elementary school children aged four to six, which is now in its third year.

The study of 72 children involves a standard treadmill being set up in each child’s home with a therapist overseeing forty sessions of treadmill training over eight to ten weeks. The study compares two different types of treadmill exercise: traditional vs. short burst interval.

During the traditional treadmill sessions, children walk at a steady pace for thirty minutes, with speed increasing a little each time. During the short burst interval training, the child walks at a comfortable pace for thirty seconds and then begins alternating with walking faster for thirty-second bursts (fast, slow, fast, slow). Pilot project data shows the latter technique to be more beneficial in helping children with CP walk better.

Total Gym

Bjornson’s third project has just entered its fourth year and features middle grade and high school-aged children and teenagers. The five-year study uses a piece of equipment called a “Total Gym” system.

This study compares strength training with a traditional steady-paced method to power training using the short burst interval method. Pilot data shows the power training combined with short burst interval treadmill training to help this age group walk better.

As her work continues, Bjornson says she would like to see more clinicians use evidence-based practice and a national electronic health record established. She believes these two things would make it easier for researchers to contact people with CP, their parents, or caregivers to improve treatment and research rather than the current model, which the provider controls.

“Doing research with persons with CP is not black and white because no two people present exactly the same way,” she explains. “We’re beginning to chip away at the iceberg we can see above the water.”

As an active member of the CP Research Network, Bjornson says she appreciates how the network has brought persons with CP, parents, and caregivers to the table with providers and researchers for the first time.

“The honestly and resilience of the children and families I get to work with is why I feel so fortunate to do this work,” she adds. “They are just amazing and have taught me so much. They are the reason I chose to pursue my research training after practicing for many years.”

A small image preview of Dr. Bhooma Aravamuthan linking to blog post ‘CPRN Investigators To Detail Important Findings’

CPRN Investigators To Detail Important Findings

Three researchers from the Cerebral Palsy (CP) Research Network will present scientific findings at this year’s American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting.  

Kristen Allison, Ph.D., a speech pathologist and researcher at Northeastern University, will present “Speech and Language Predictors of Participation in Children with CP,” research made possible through the CP Research Network’s community registry hosted at MyCP.org.  

Allison’s research stems from parent surveys sharing the speech and language capability of children with CP and insights about their interactions with peers and common communication breakdowns due to speech and language impairments.    

Pediatric movement disorders neurologist Bhooma Aravamuthan, MD, DPhil, was also able to collate data through MyCP.org. She will present her findings on community attitudes toward a CP diagnosis and how a complete explanation of causes of CP can benefit those with the condition and their families.  

A third presentation, powered by efforts within the network, will be led by Amanda Whitaker, MD, an orthopedic surgeon who has been examining practice variation in hip surveillance at centers in the CP Research Network. Her findings are already shaping quality improvement protocols as part of the network’s drive to become a learning health network.   

AACPDM’s 75th annual meeting with take place on October 6 to 9, 2021, at Quebec City Convention Centre in Quebec, Canada.

The CP Research Network remains committed to enabling clinicians to conduct research that advances the care of people with CP via our community registry and learning health network.  

Subscribe to our newsletter to stay up-to-date on all our latest CP news.