Resources for adults with cerebral palsy, such as research and educational presentations, plus an interactive forum you can join today!

 

The MyCP webinar on assessing pain in adults with CP will be delivered by Drs Gannotti and Noritz

Assessing Pain for Adults with Cerebral Palsy

Drs. Gannotti and Noritz, dressed in business attire, at an informal meeting in Austin, TX

Drs Gannotti and Noritz, clinicians who treat both children and adults, will present on assessing pain in adults with cerebral palsy (CP).

This month’s MyCP webinar will focus on the CP Research Network’s Adult Care quality improvement (QI) initiative at 8 pm ET on Monday, October 25. CP Research Network leaders Garey Noritz, MD and Mary Gannotti, PT, PhD, will provide an overview of this initiative which is focused on pain for adults with CP. Quality improvement, like clinical research, is aimed at improving health outcomes but using a different methodology to achieve those outcomes. QI is exciting because it can change health outcomes much more rapidly than clinical research. The webinar will include a brief overview of how QI enables these faster changes in outcomes.

Our Adult Care QI initiative includes clinicians that treat adults with CP and community advocates working together with a global aim of improving the care that adults with CP receive. Supported by data from our Adult Wellbeing and Chronic Pain study, this initiative has narrowed it first efforts to uniformly assess pain in each clinic visit for adults with CP. In addition to support from our ongoing study, a recent MyCP focus group with several adults with CP helped shape initial assessments of pain used by the participating clinicians.

Dr. Gannotti is a professor of physical therapy at the University of Hartford and a PT affiliated with Shriners’ Hospital of Springfield and co-leads the adult study group of the CP Research Network. Dr. Noritz is the Director of the Complex Care program at Nationwide Children’s Hospital and an adult internist who treats adults with CP. Doctors Gannotti and Noritz will present for approximately 25 minutes before opening the webinar to questions and answers. Community members who wish to participate in the webinar can sign up on CPRN or to receive an email with a link to the recording after the webinar.

A grey page banner with a photo of Heather Hancock, a smiling woman with long brown hair wearing a red sweater and glasses.

CP Stories: Heather Hancock Defies the Odds

How Heather Went from Survival to Pioneer for Change

From the moment she was born prematurely, CPRN advocate Heather Hancock was battling to survive. Today she reveals how she is still fighting for adequate care for adults with cerebral palsy.
Heather Hancock, pictured with long brown hair and red shirt, wire rimmed glasses with a book case behind her is an editor

Heather Hancock is a writer and an editor as well as an advocate for cerebral research and care for adults.

When Heather Hancock was born more than three months prematurely – at 25 weeks gestation – doctors warned she would struggle to survive the first 24 hours of life.

But Heather defied the odds. After three months in an incubator, the tiny baby was well enough to be taken home. That was the first day her mother, Edna, was allowed to pick up her baby and hug her.

As a toddler growing up in Calgary, Alberta, Canada, Heather was slow to crawl and meet her physical development milestones. Meanwhile, her younger brother, Colin, born 13 months after her, was advancing rapidly.

Her family faced a fight to enroll her at the local school.

“Back then, disabled children were shunted away to special schools out of the public eye,” she says. “I was integrated into the public school system, which was great for my education but not good for my social life. Kids did not accept me very well, and neither did their parents, so I endured incessant bullying from kindergarten through to grade 12.”

The bullying took its toll on Heather. By the age of 14, she was having suicidal thoughts but fought through them, crediting her faith for continually bringing her comfort and purpose during dark times.

As an adult, Heather was keen to pursue a career as a registered nurse but faced more hurdles. Halfway through her training program, she began to experience pain in her knees. Being on her feet for hours on end and the job’s physical nature was too much for her. Mustering her characteristic grit, Heather went back to college to get an office administration certificate. She was determined to work in healthcare and took up a position as a unit clerk in an outpatient clinic.

However, after a 22-year career, Heather began to experience painful lower back spasms. The pain made it impossible for her to walk for several hours each day, and she took medical retirement at 44.

“It seemed like nobody could tell me what was going on,” she recalls of that time. “In Canada, there is no doctor that specializes in adults with cerebral palsy. It feels like you are just cut loose when you are 18 and told to “have a good life!”

Although she underwent rehabilitation and saw physiatrists who work with spasticity and stroke patients, she noticed a stark difference from the care she’d received as a child.

“It can get harder to find a team of doctors as you get older,” she explains. “Today children with cerebral palsy are sometimes treated by a multidisciplinary healthcare team. It would be great if adults had the same access to help, equipment, and physical therapy. Finding the right team of doctors is crucial so that everyone can put their heads together and come up with a plan.”

Professionally, Heather pivoted to other talents. She forged a new career as a professional coach providing inner healing for women suffering from trauma and abuse. Then, in March 2019, Heather began working as a contributing writer penning fiction and poetry for CoffeeHouseWriters.com. She became an editor in June 2020. Working to her own schedule helps manage her pain.

“When you are your own boss you can schedule things for times that work better for you,” says Heather, who now writes from home in Maple Creek, Saskatchewan, Canada.

Meanwhile, Heather continues to advocate for the Cerebral Palsy community. She relentlessly contributes to research and discussions on the CP Research Network’s MyCP community forum to ensure that the “absence of knowledge and care for the adult CP community” is addressed. She is also pushing for change with her local cerebral palsy association in Saskatchewan and national and international groups.

“I’ve been a pioneer since I was old enough to walk,” she smiles. “I may not see the benefit in my lifetime, but the younger generations will.”

Thank you Heather for sharing your inspiring story!

Marquis Lane, a smiling young man seated on a walker, wearing a Georgia sweatshirt with four friends behind him at a stadium.

CP Stories: Marquise Lane

Marquise Lane, with a beaming smile and glasses sits listening to music in his college dorm with a navy football sweatshirt

Marquise is always smiling ear to ear — here while listening to music in his dorm room.

It’s a daily decision to keep fighting and believing in yourself.
Marquise Lane
Client Success Specialist

For Marquise Lane, succeeding at college wasn’t just a matter of working hard and pushing himself academically. Conquering his CP mobility hurdles and achieving independence were also vital.

When Marquise Lane graduated from UGA in 2016 with a BA in Management Information Systems (MIS) the moment was extra special to him.

As a young person with cerebral palsy, Marquise hadn’t just put in the hours of study needed to gain his degree, he’d also worked tirelessly to overcome the physical hurdles holding him back from his college dreams.

In high school, Marquise got up very early to make sure he dressed himself – here in khakis and a grey argyle sweater.

Marquise was determined to be independent from an early age so he made sure he got up early to have time to dress himself.

“I always wanted to go to college,” says Marquise, 27, who lives in Valdosta, GA. “But it wasn’t the mental things like the schoolwork that were in the way, it was more of the physical things like dressing and putting shoes on.”

Armed with a positive mental attitude, Marquise took on the challenge with gusto. Throughout his 12th grade, he got up extra early in order to practice mastering the independent skills he needed to succeed.

“I had to leave the house at 7 am so I’d get up at 5.30 am to give myself that extra time to dress and put my shoes on by myself – just to practice,” he recalls. “For a while I needed help but I got to the point where I was independent enough. Eventually, my mom agreed I was ready to go to college.”

Marquise was diagnosed with Spastic Diplegia cerebral palsy at the age of three and says he grew up fully understanding what having CP meant.

A young Marquise, in a white t-shirt, demonstrates his domestic skills by ironing a pair of his dark slacks

A young Marquise Lane takes up ironing his own slacks to help out around the house.

As a young boy, Marquise wanted to do the same activities as other kids his age but also knew his circumstances were different

At seven years old, Marquise wanted to do all the activities his peers did including baseball!

“My mom’s always been big on talking to me like an adult so from three I knew what I had,” he says. “I don’t really like the word “different” because I do feel like I’m a normal person, I just have a different set of circumstances I have to deal with. As a younger kid I looked at other kids and saw them do things like swing on the monkey bars and then play football and sport. I wanted to do that too, but it was hard because I couldn’t. You have to fight that feeling of “I’m not good enough” or “I’m weird.” Every day you have to wake up and focus on the small victories and the positive things you’ve done. That provides momentum to keep going forward.”

At UGA, Marquise lived alone on campus in an accessible room and says he is grateful for the friends he made who would always lend a helping hand with things like Walmart and barbershop runs. His challenges on campus ranged from navigating the hills in Athens, GA, to working out how to get from A to B. From the start, the college paired him with a disability coordinator tasked with ensuring all his classes were accessible and that he had all the help and resources he needed.

“UGA went out of its way to make sure I could get to where I needed to be,” he says. “I had all the tools I needed to succeed academically and UGA provided a van service that took me from class to class and just about anywhere else on campus I needed to go.

Marquise Lane sits down on his aluminum walker smiling with a wrought iron arch and a building with white pillars behind him

Marquise Lane sits on his walker smiling while on his college campus

“There were several occasions where an entire 300-person class was moved because the original building wasn’t accessible for me and I had letters to share with professors so they were aware of any special assistance I needed.”

Regardless, it took stamina and endurance for Marquise to keep pushing toward his academic goals.

“It was tough at times,” he says. “When you look around you see that most people don’t have to work as hard as you do to accomplish basic tasks. They don’t have to worry about accessibility and how far away things are. I learned to focus on myself and limit comparisons.”

Marquise Lane, in a red sweatshirt at a job fair, sits holding a large white sign with the words “Hire Me” in red

Marquise was not shy in pursuing work out of college.

He cites graduating from college as the culmination of belief in himself and hard work. “It showed me and my family that I could do anything I put my mind to,” he says.

Since graduating in May 2016, Marquise has worked as a client success specialist for ProcessPlan. His goal now is to continue living independently and advance his career.

“There isn’t some magical point where you have things figured out and that’s it,” he says. “Having a vision for the things you want to accomplish in life helps. Once you have a vision, you can break that down into actionable steps and go forward. It’s a daily decision to keep fighting and believing in yourself.”

“Traveling With a Wheelchair” on a bright green page banner with a photo of a wheelchair beside the ramp to enter the aircraft.

Traveling With a Wheelchair

A damning report has revealed how the country’s leading airlines have lost or damaged at least 15,425 wheelchairs or scooters since the end of 2018. As we travel from A to B, what steps can we take to safeguard the precious cargo our community relies on?

Traveling by air can be stressful for anyone but handing over a wheelchair to busy airline staff and hoping to find it unscathed and fully-functioning at your destination can feel like a lottery. Sadly, for many traveling with disabilities, vacations and other trips too often go hand-in-hand with the frustrating fallout of damaged equipment.

“As a family with a wheelchair user it is a continual frustration that airlines often take such little care,” says CPRN’s Michele Shusterman. “It seems like airlines would rather pay thousands of dollars to repair or replace broken equipment instead of figuring out a process for not destroying them. Some of the experiences our community members go through are awful.”

As we await much needed change and a commitment to better care from airlines, there are some preemptive measures we can take to lower the risks of equipment being damaged in transit. Here’s our guide to traveling with a wheelchair:

Before you go, carry out maintenance.

Making sure your equipment is in the best shape possible before leaving will help it to be more durable and robust on your travels.

MANUAL WHEELCHAIRS: The newer designs of manual wheelchairs have solid inner tubes to combat against flats. Before you leave, check the tires for any inflation issues, cuts, or wear on the tread (Miller, 2017). Be sure to check the wheel locks, ensuring that they engage and disengage easily without getting caught. Go through and tighten bolts and nuts on any moving parts. This is to avoid any parts being lost during transit.

BATTERY-POWERED WHEELCHAIRS: Run through the same checks for the tires prior to your trip and consider book a service for your equipment. Battery-powered wheelchairs routinely need to be checked by an authorized dealer once or twice a year (Miller, 2017). An expert can check your battery voltage and flag up if it needs to be replaced soon.

Get familiar with the airline codes.

Airlines have a series of codes for people traveling with equipment or disability. These codes are called Special Service Request Codes, or SSR, and are given to you when you get your ticket (wheelchairtravel, 2020). They are used to keep track of special assistance requests and to assign appropriate staff to the person in need.

A few of these codes include:

CODE DESCRIPTION
WCHR Wheelchair assistance required
WCOB On-board wheelchair requested
WCMP Traveling with manual wheelchair
WCBD Traveling with dry cell battery-powered wheelchair. (WCBW for wet cell battery)

You’ll find a more comprehensive list here. Ensure that your flight ticket is marked with the correct one.

Attach instructions to your equipment.
Traveling with a wheelchair tips: A spare manual wheelchair is pictured on the tarmac with a bright pink instructional signTraveling with a wheelchair tips: A wheelchair should include handling instructions and fight details attached to the chair
It seems like a no-brainer that wheelchairs and other expensive and precious equipment should be handled with the utmost care but that can be far from the reality. Sadly, your equipment will likely encounter people who are unfamiliar with how it works and don’t have the time or inclination to find out how to operate it correctly. Attaching laminated instructions and bright reminder signs to your equipment can help to prevent rough mishandling.

Consider taking a spare if you have one.

Sometimes it is better to plan for the worst outcome so that mobility isn’t impaired during the trip. Take a spare wheelchair, often a manual one, if you can do so. This will ensure an easy back up if the airline does damage the wheelchair before you get to your destination. Having a spare wheelchair can also help when accessing certain areas where a power wheelchair may have some difficulties. If you do not have a spare, be mindful of the resources available to you in the area you are traveling. See if renting a wheelchair is an option.

Preparation for flight at the airport
Traveling with a wheelchair tips: A manual chair is bound with cellophane and loose items removed in prep for travel.
If you are using a manual collapsible wheelchair, ask if the aircraft has a closet large enough to accommodate it. This ensures you can take your equipment all the way to the gate. If your equipment is being stored in the cargo hold with baggage, carefully remove anything that you think may come lose during handling. Ask for reassurance that it will be handled with care.

Ask for assistance if you need it – it’s your right.

Airlines must provide assistance and offer preboarding to passengers with disabilities who make their needs known prior to travel or at the gate. Get familiar with the Air Carrier Access Act of 1986 (ACAA), a law that guarantees people with disabilities the right to receive fair and nondiscriminatory treatment when traveling on flights operated by airlines in the U.S (wheelchairtravel, 2020).

If an airline damages your equipment, it may be covered.
Plane travel with a wheelchair is challenging: a wheelchair, collapsed on its side, rides up a luggage ramp into an airplane
Airlines are mainly responsible for damaging equipment during their flights. This can be up to the entire cost of the original listing price of the wheelchair. For this process to happen properly, report damages IMMEDIATELY after your flight. This further ensures that it is documented and brought to the right people, a step in the direction of making the airline 100% responsible for damages!

Sources:

Flying With A Wheelchair: Guide To Air Travel For People With Disabilities. Wheelchair Travel. (2020, January 30).

Miller, F., & Bachrach, S. J. (2017). Cerebral palsy: a complete guide for caregiving (3rd ed.). Johns Hopkins University Press.

A grey banner with ‘MyCP Webinar Series’ and a photo of Mary Gannotti, PT, PhD; smiling and wearing a brown blazer.

Join our Webinar on Adult Wellbeing and Pain in Cerebral Palsy

How does your lived experience align with the initial results from our chronic pain study?

Mary Gannotti, PT, PhD, smiles with brown shoulder length hair, a red blouse and a brown blazer.

Mary Gannotti, PT, PhD

Compiling information about the chronic pain and wellbeing challenges many adults with cerebral palsy experience, sometimes on a daily basis, is an important priority for the Cerebral Palsy Research Network as we work to improve health outcomes for our community.

On Monday, July 19, at 8 pm ET, Mary Gannotti, PT, PhD, co-principal investigator of the CP Research Network’s adult study group, will present an update on our adult study of wellbeing and chronic pain.

Dr. Gannotti’s study seeks to gather cross-sectional data from 500 adults with CP to demonstrate health differences between adults with CP and the adult population overall. This interim report includes data from approximately the first 200 participants in the study.

“Members of the community will find it valuable to see how their personal lived experience aligns with many other adults with CP,” says Paul Gross, President, CEO and Co-Founder of the CP Research Network. “Dr. Gannotti will discuss how we plan to use these findings to support additional adult research and to advocate for policy changes in healthcare to improve health outcomes for adults with CP.”

Prior to Tuesday’s virtual event, MyCP webinar series registrants and MyCP members will receive a reminder with a link to the webinar. If you are not subscribed to the series, you can sign up for this individual webinar on our MyCP Webinar Series page.

The presentation will last for approximately 30 minutes and be followed by an open Q&A with Dr. Gannotti. All of our webinars are recorded and posted on our YouTube channel subsequent to the live webinar. You can also view Dr. Gannotti’s inaugural presentation after we initially launched the study in 2019.

Adults with CP can still participate in the study which is hosted in our Community Registry on MyCP.

A banner with MyCP Webinar Series, ‘What is a learning Health Network and why should you care?’ and a photo of Dr. Amy Bailes.

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 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).

Four laughing young adults in a line; two young men in the middle with two young women on either side of them pose for a photo.

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.

A smiling young man with glasses, short hair and a beard lies on his side at an archaeological site giving the thumbs up sign.

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.)

A small preview image of the Staying Driven logo linking to blog post ‘CP Research Network Launches New Fitness Program’.

CP Research Network Launches New Fitness Program

We 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!

Steph 'The Hammer' Roach, Adaptive Fitness CoachStaying Driven - Virtual Adaptive FitnessStaying Driven is a virtual adaptive fitness program founded by Stephanie “the Hammer” Roach. An adult with CP and a former CrossFit trainer and gym owner, Steph shifted her business during the pandemic to virtual classes for people with disabilities. She and her staff of adaptive fitness trainers offer multiple classes a week for people with disabilities.

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:

  1. Be a current member of MyCP (joining is free). Parents of teens under 18 need to be the active member.
  2. Participate in at least one MyCP survey (a list of available surveys can be seen here).
  3. Sign up for a free Zoom account for class registration.
  4. Read and sign the waiver for Staying Driven and the CP Research Network on the sign-up page

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!

White Scrabble game tiles in a dark green rack spelling the words: ‘EX AND PA PART FOUR’.

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.