Resources for children with cerebral palsy and their families, such as research and educational presentations regarding therapies, care, and a free cerebral palsy toolkit you can download!

Dr. Amy Bailes webinar on what is a learning health network.

What is a Learning Health Network – and why should you care?

Amy Bailes, PT, PhD

Amy 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 incomes.

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 page).

The Shrader children -- triplets to the right with sister Cate on the left.

Preparing for College – Part 3

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

In 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 in his second round of being elected to the Homecoming chord.

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.

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.

Mason Shrader on an archeological dig in Spain

Preparing for College – Part 2

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

[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.

Mason Shrader on an archeological dig in SpainThe professors recognized his abilities far exceeded his limitations and worked to maximize his opportunities. He thrived, even studying abroad on archaeological digs in the Yucatan of Mexico and off the coast of Barcelona, Spain. Mason worked hard and he had chosen a school with the heart necessary for his success.

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.)

Benjamin, Mason, and Claire, Triplets born to Carol and Wade Shrader in 1997

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.

Dr. Garey Noritz

CP Stories: Dr. Garey Noritz

As the new chair of the AAP’s Council on Children with Disabilities, Dr. Garey Noritz has the cerebral palsy community in mind.

CP Stories

Dr, Garey Noritz, Developmental Pediatrician, Nationwide Children’s Hospital

A long-time supporter of the CP Research Network, Dr. Garey Noritz understands how vital the American Academy of Pediatrics’ commitment to helping children with disabilities is for the cerebral palsy community.

Now, in his new role as chair of the organization’s Council on Children with Disabilities (COCWD), he is determined to ensure that all children with disabilities – and their broader community needs – are kept at the forefront of the AAP’s work.  

He tells the CP Research Network: “The health of children can only be improved by improving conditions for children and families in all areas of their lives as we advocate for safe environments, effective schools, and most of all, just policies at the federal and state level.”

As an internist and pediatrician specializing in neurodevelopmental disabilities at Nationwide Children’s Hospital in Columbus, Ohio, Noritz is a member of the CP Research Network’s Executive Committee and understands how COCWD provides vital support to our community.

The council is presently revising a clinical report, “Providing a medical home for children and youth with cerebral palsy,” from 2011 to ensure that it contains the most up-to-date information and guidance for pediatricians treating children with cerebral palsy. 

For many years, COCWD has played an essential role in improving care for those with cerebral palsy. This includes providing clinical reports to pediatricians on all aspects of the care of children with disabilities, from screening and diagnosing young children to transition to the adult health system.   

“There is a lot of political clout with the AAP, so it is important to make sure children with cerebral palsy are represented and advocated for,” he adds.

Excited to begin his new role, Noritz credits the council as one of the most active and influential AAP groups and is excited to continue its legacy.

As we come to the end of a year that brought countless health and racial inequities to the surface, Noritz is determined to ensure that no child is left behind and lists inclusivity, research, advocacy, and education as priorities. 

Encouragingly, as he begins this important work, he expresses a wish to continue to have open communication with CPRN members to understand the community’s continuing needs.  

Congratulations, Dr. Noritz. We’re excited to work with you in your expanded capacities!

Exercise and Physical Education Part 4

Exercise and physical activity in spastic diplegia – older children, adolescents, and adults – part 4

[This post is part of our Knowledge Translation/Education Tuesday series. Guest author Lily Collison, author of Spastic Diplegia–Bilateral Cerebral Palsy, continues the series. You can ask questions of the author on the MyCP Forum].

In the last post I included links to the guides Fit for Life, Fit for Sport, and exercise and physical activity tips for the younger child. This post will address exercise and physical activity tips for the older child, adolescent, and adult. I wrote them with therapists at Gillette.

  • For all types of exercise, a referral to either a PT or OT is recommended, even for just one or two sessions. There are also wonderful athletic trainers who have advanced training in working with people with physical limitations. Trainers who lack this specialized training, however, may advise overexercising, which can lead to injuries. Consider calling the fitness centers or gyms in your area to check if any of their staff have training in adapting exercise programs for people with physical challenges.
  • If you’re working with weights, consider getting expert guidance on how much weight is safe to work with and how many repetitions to perform.
  • Fast walking can achieve many of the same benefits as running and may be safer for some people.
  • You have many options when it comes to cycling, including outdoor and indoor (static) bikes. Three-wheeled bikes may be ideal for those with balance issues. You can purchase blocks (trainers) to convert an outdoor bike to an indoor bike when the weather doesn’t allow for outdoor mobility.
  • A therapist can offer guidance on the appropriate size and type of sports wheelchair to use and can check to see if you are eligible for any funding aid to purchase one.
  • A few tips for swimming:
    • Consider scheduling a few sessions with a pool PT or OT to develop an appropriate swimming program.
    • If you use a wheelchair, call around to find a pool with PVC pool chairs and a ramp.
    • A pool temperature of 88–94 degrees Fahrenheit can be very therapeutic and can help reduce pain and stiffness.
    • Nonskid pool shoes are recommended for walking from the changing room to the pool and back to avoid falls on wet pool decks.
    • Swim paddles, kickboards, flippers, etc. can be used to increase resistance for muscle strengthening.
  • You can find many excellent videos online to guide you through adaptive yoga, tai chi, and other such programs. The National Center on Health, Physical Activity and Disability (NCHPAD) has some.
  • Incorporate as much exercise as you can into the normal day (for example, cycling to school, after-school activities, or work).
  • Most school programs include at least a weekly session of physical education. Try to ensure that the program includes the child or adolescent’s needs as much as possible so that they can participate in the sport, even if this means adapting the rules, the equipment, or the mindset of the teacher or coach. Forcing the child or adolescent to sit out their school physical education period is a missed opportunity both in terms of the benefits of exercise and the camaraderie and social experience of teamwork. Research has shown that school-based exercise programs are beneficial for children and adolescents with CP.

I’m very respectful of the fact that the people who live with physical disability will have other tips. Your comments are very welcome over at MyCP.

Exercise and Physical Activity

Exercise and physical activity in spastic diplegia – younger children — part 3

[This post is part of our Knowledge Translation/Education Tuesday series. Guest author Lily Collison, author of Spastic Diplegia–Bilateral Cerebral Palsy, continues the series. You can ask questions of the author on the MyCP Forum].

In the last post I wrote about Verschuren and colleagues (2016) recommendations for exercise and physical activity for people with cerebral palsy (CP). For older children, adolescents, and adults with CP, the Peter Harrison Centre for Disability Sport at Loughborough University in the UK has published two excellent guides. The first, Fit for Life, is for people with CP who are new to exercise. The second, Fit for Sport, is for people who want to take their exercise to a more advanced level. These are excellent resources that I would strongly encourage readers to check out.

Other useful online resources include:
➡ American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) We Can All PLAY: Participation in Adapted Sports and Recreation for Children and Youth with Disabilities.
➡ American College of Sports Medicine Health-Related Fitness for Children and Adults with CP.
➡ The National Center on Health, Physical Activity and Disability (NCHPAD) is a public health practice and resource center for people with disabilities. It has a selection of informative videos.

The following are some tips on exercise and physical activity for the younger child, and the next post will address the older child, adolescent, and adult. The tips were gleaned from my own experience, but with additional pointers from therapists at Gillette Children’s Speciality Healthcare. Your PT or OT can help you develop a targeted and safe exercise program. They will also be able to offer advice on which types of exercise are best for joint preservation. There’s a balance to be struck between preserving joints and playing sports you most enjoy. For example, if playing soccer with friends is what you most enjoy, it is a good sport for you. Swimming is a particularly good sport because of its low impact on the joints.

Exercise and physical activity tips for the younger child
➡ The typically developing toddler gets their muscle stretching and strengthening exercises through everyday movement: running, climbing, jumping, etc. Since the goal in spastic diplegia is to follow normal development as much as possible (to get normal forces acting on the bones), we need to ensure the young child with spastic diplegia gets their required amount of exercise and physical activity. Movement is essential for the child with spastic diplegia, including moving joints through the entire range of motion (ROM) of which they are capable.
➡ Incorporating muscle stretching and strengthening into play and other activities the child really enjoys is enormously helpful. For the young child, learning to play and learning through play are very important. Incorporating exercise and stretching into the normal day as much as possible—for example, encouraging the child to use a tricycle to travel short distances—also helps.
➡ Playgrounds (both outdoor and indoor) are great places for all children to play, but they are especially important for the child with spastic diplegia. Here the child has the opportunity to move in a variety of ways. Playgrounds are also great because they are normal family settings. Parents of children with limited mobility tend not to bring their children to venues that require lots of movement as often, but in fact the child with spastic diplegia needs such opportunities to move and play even more than the typically developing child. Safety must be a concern, of course, but we cannot be so overzealous about safety that our child misses out on great opportunities for movement.
➡ Swimming is also great for the young child with spastic diplegia.
➡ Parents may be reluctant to use adaptive equipment (such as a recumbent bicycle) because they worry it will make the child stand out more. I would advise parents to weigh the perceived costs against the benefits for the child. (I’m not talking about financial costs.) I have also found that children can be very accepting of others; often the prejudice lies with us adults, not with our children.

Happy Thanksgiving to all those who celebrate this great holiday.

MyCP Webinar 10

Cerebral Palsy Diagnoses Webinar

Cerebral Palsy Diagnoses Webinar

Bhooma Aravamuthan, MD, DPhil

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar series would be on family attitudes toward a cerebral palsy diagnoses on Wednesday, November 18 at 8 pm ET. Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders neurologist from St. Louis Children’s Hospital, will share her objectives and preliminary data for this research. The presentation will be approximately 20 minutes and followed by an open Q&A. Dr. Aravamuthan is a leader in numerous initiatives for cerebral palsy (CP) in CPRN and the field with her recent appointment to the American Academy of Neurology Child Neurology Quality Measures Standing Workgroup. In conjunction with this study, Dr. Aravamuthan has been surveying clinicians who diagnose cerebral palsy in an effort to change the field’s understanding of CP with the advent of more genetic discoveries in conjunction with CP. In this webinar, she will talk about her recent study of clinicians and how she hopes to marry that with the feedback from families and individuals with CP to improve diagnoses and clinician / patient dialogue in support of families.

Interested participants need to register for the webinar to be sent instructions for joining. Webinars will be recorded and posted for later viewing. The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies. Please join us!

Exercise and physical activity in spastic diplegia – part 1

Exercise and physical activity in spastic diplegia – part 1

[This post is part of our Knowledge Translation/Education Tuesday series. Guest author Lily Collison, author of Spastic Diplegia–Bilateral Cerebral Palsy, continues the series. You can ask questions of the author on the MyCP Forum].

The natural beauty surrounding us, helps during another lockdown here in Ireland. COVID case numbers have recently increased thus further restrictions were necessary.

Since staring to write for CPRN, I have addressed Selective Dorsal Rhizotomy in adulthood, then a series on the definition, causes & risk factors, and prevalence of cerebral palsy. Over the next few posts I will write about exercise and physical activity in cerebral palsy (CP).

Exercise and physical activity is important for everyone. The goal of exercise and physical activity for the person with spastic diplegia is the same as for their able-bodied peers–having a physical disability does not confer any exemption from needing to exercise and stay physically active.

Just so there is no ambiguity, let us clarify what is meant by these terms:
➡ Exercise is planned, structured, repetitive, and intentional movement intended to improve or maintain physical fitness [1]. Exercise is a subtype of physical activity. Examples of exercise include running, cycling, or attending a gym class.
➡ Physical activity is movement carried out by the skeletal muscles that requires energy expenditure, thus any movement is physical activity [1]. Physical activity varies from light to moderate to vigorous. Examples of each include:
– Light physical activity: slow walking
– Moderate physical activity: brisk walking, jogging, climbing stairs
– Vigorous physical activity: fast running, fast cycling

It follows that energy expenditure is lowest while doing light physical activity and highest while doing vigorous physical activity. Recent advancements in wearable monitoring devices allow better measurement of physical activity levels. (I like being able to track my daily activity level.)

Do children and adolescents with spastic diplegia take part in enough physical activity?
No. Studies have shown that children with CP walk significantly less [2] and spend more time being sedentary [3] than typically developing children. A further study [4] found that children aged 3 to 12 showed a decrease in amount and intensity of physical activity with increasing GMFCS level and increasing age.

Does this reduced physical activity have health consequences?
Yes. Reduced physical activity was associated with higher energy cost of walking in adolescents with mild spastic CP [5] and elevated blood pressure in children and adolescents with mild or moderate spastic CP [6].

Do studies show exercise and physical activity is beneficial for children and adolescents with CP?
Again, yes. Studies have found benefits across a range of measures, including fitness, body composition, quality of life, and happiness [7–9]. A physical therapy research summit sponsored by the American Physical Therapy Association emphasized the need to promote and maintain physical fitness in children with CP to improve health, reduce secondary conditions, and enhance quality of life [10].

Over the next posts I’ll write about the importance of exercise and physical activity in adulthood, exercise and physical activity recommendations for people with CP, and more.

References

Surgical Spasticity Treatments in Children who are not Ambulatory

Surgical Spasticity Treatments in Children who are not Ambulatory

Surgical Spasticity Treatments in Children who  are not Ambulatory

Sruthi Thomas, MD, PhD Pediatric Physical Medicine and Rehabilitation

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar series would be on surgical spasticity treatments for children who are not ambulatory on Monday, October 26 at 8 pm ET. Sruthi Thomas, MD, PhD, a pediatric physical medicine and rehabilitation physician from Texas Children’s Hospital, will share her formative work in this topic identified by Research CP. The presentation will be approximately 20 minutes and followed by an open Q&A. Dr. Thomas has initiated a number of lines of study on spasticity management for cerebral palsy (CP) to build preliminary data in support of a large multi-center comparative effectiveness research (CER) grant application. Spasticity interventions have been studied more in children with CP who are ambulatory so a CER study that helps determine which interventions work best in children who are not ambulatory is needed. Parents are increasingly faced with very difficult choices between surgical spasticity interventions to address pain, care and other activities for these children.  In this webinar, Dr. Thomas will talk about the state of the evidence, the importance of research and the studies she is planning to answer critical questions for this population.

Interested participants need to register for the webinar to be sent instructions for joining. Webinars will be recorded and posted for later viewing. The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies. Please join us!