A headshot of Lily Collison with short, dark hair, the cover of Pure Grit and blond haired Kara Buckley

Pure Grit: An interview with the authors

Ila Eckhoff with tight curly brown hair smiles broadly with dark glasses and a light blue fleece over her v-neck shirt.

Ila Eckhoff, is a managing director at Blackrock Associates and is featured in Pure Grit.

The Cerebral Palsy Research Network will kick off its 2022 MyCP webinar series with an interview of the authors of Pure Grit, a book full of stories about remarkable people with physical disabilities doing extraordinary things.  The webinar is free and open to the public next Tuesday, January 11 at 8 pm ET. Ila Eckhoff, an accomplished financial services sector leader and one of the featured people in the book, will also join the conversation with authors Lily Collison and Kara Buckley.

The interview will include how the authors sought to develop the book, chose their subjects, and what they hoped the book would achieve. The one hour webinar will include 40 minutes of interview followed by open Q&A with the attendees.

Please join us for the interview.  If you are not already registered for the MyCP Webinar Series, you can sign up here.  A free Zoom account is required to sign into the webinar.  We look forward to seeing you there.  If you cannot make it, the interview will be recorded and posted on our YouTube channel within 24 hours.

Happy New Year 2022 from the CP Research Network with a black background and fireworks in the corners

Happy New Year from the CP Research Network

At the Cerebral Palsy Research Network, we have a lot to be thankful for.  You, our great extended cerebral palsy (CP) community, helped us achieve our fundraising goal of $10,000 this past month for our MyCP webinar series in 2022.  With our board of directors’ matching, we raised more than $30,000 for our network! We are excited to bring our MyCP webinar series back in full swing next week beginning with a live interview of the authors of Pure Grit (details to come out tomorrow).  Thank you to all who contributed and helped to spread the word!

2021 in Review

Last year was transformative in numerous ways for the CP Research Network.  We kicked off the year with the announcement of our merger with CP NOW. The combination of their educational and wellness programming with our efforts led to significant accomplishments including:

 

Our Research and Quality Improvement initiatives made significant progress in both seeking to answer key research questions about CP and improving the treatment of people with CP now.  A few highlights include:

What’s new for 2022?

We have a lot of projects that will culminate in 2022! These include multiple publications of our work in leading journals, partnerships to sustain and grow our wellbeing offerings, continued progress on our research and quality initiatives, and the return of our MyCP webinar series to name a few.

There are lots of ways to stay engaged with us.

Please consider one of these:

All the best to you and the entire CP community for 2022!

 

 

 

 

Cerebral Palsy Fitness program gets sponsorship from Neurocrine Biosciences

Neurocrine Biosciences Sponsors Cerebral Palsy Fitness

Neurocrine Biosciences logo

Neurocrine Biosciences is the exclusive sponsor of our MyCP Fitness program with Staying Driven.

The Cerebral Palsy Research Network announced that Neurocrine Biosciences, a pharmaceutical manufacturer based in Southern California, will be sponsoring the network’s MyCP Fitness Program hosted by Staying Driven. The CP Research Network launched its MyCP Fitness program in June 2021 to enable members of the MyCP community to have access to quality adaptive fitness from the safety and comfort of their own home. The network chose adaptive fitness coach Steph “the Hammer” Roach and her crew of adaptive fitness trainers to provide these free services to our community. The Neurocrine sponsorship enables us to continue the program through 2022.

While physical activity is important for everyone’s health, it has been shown to be even more important for people with disabilities like CP who are at greater risk for cardiometabolic disease.[ref] The challenge is that most gyms or virtual fitness programs don’t have appropriate accommodations or adaptations for people with CP. Staying Driven, founded by Steph Roach, a former CrossFit trainer who has CP, focuses on fitness for people with disabilities. Our program was an attractive fit for Neurocrine which has a philosophy is to holistically support and be good partners to the patient community they hope to serve.

The Neurocrine Biosciences sponsorship not only extends the length of the program, but enables the CP Research Network to reach more community members. Teens and adults with CP who are interested in participating in the MyCP Fitness program can sign up for free on our Cerebral Palsy Fitness page.

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.

Four smiling women stand outdoors on a sunny day behind the UP Academy sign with their arms folded and resting on top.

CP Stories: Tanya Sheckley and UP Academy

Meet the CP mom who overcame her grief to build an incredible inclusive school in her daughter’s memory

Everyone needs a place to belong. Inclusivity is life.
Tanya Sheckley
Mom, Inclusive School Creator

Tanya Sheckley’s vision of creating an inclusive school empowering ALL children was almost shattered with the untimely death of her beloved daughter Eliza. Yet, the resilient mother channeled her grief into creating a school to embody everything Eliza taught her about ableism, education, and empathy.

Like many CP parents, Tanya Sheckley worked hard to research education options for her daughter Eliza, who was born with spastic quadriplegia cerebral palsy.

As her daughter’s kindergarten years approached, Tanya, who lives in Mountain View, California, was dismayed to learn that many schools provided the bare minimum when it came to educating children with disabilities.

Tanya Sheckley in a red blouse smiles at her daughter Eliza who is wearing a magenta taffeta party dress with red flowers in the neckline.

Tanya Sheckley with her daughter Eliza.

Eventually, Tanya found a parent participation school that was great for Eliza, who was unable to walk or talk due to her cerebral palsy. Her daughter’s new kindergarten teacher had experience in special education and Tanya was happy to see Eliza thrive.

“She learned to read, do math, and was curious about science,” recalls Tanya. “Kids didn’t see her as ‘different.’ She fit in, she was happy and became one of the most popular kids at school. She did well academically with accommodation for the way she learned. We had gotten lucky.”

By first grade, things were changing. Despite Eliza’s stellar kindergarten record, Tanya and her husband Chris were frustrated by the recommendation to put their bright and inquisitive daughter into a modified curriculum for children with different abilities. The one-size-fits-all model meant the work would be made easier, and Eliza would not be expected to learn the same material as her able-bodied classmates.

Under the Individuals With Disabilities Education Act (IDEA), public schools are required to provide access to education. Unfortunately, in a system built to educate the masses, children who are “different” often aren’t encouraged to excel in the same way as their peers.

“It felt like a barrier to providing real opportunity,” says Tanya. “Just because a student doesn’t have an effective and consistent method of expressing knowledge doesn’t mean the student doesn’t possess the knowledge. All students should be challenged in areas of strengths and supported in areas of weakness so they leave school with the knowledge and skills to be successful and independent in the world.”

Tanya, who had previously worked in business and taught as a yoga and ski instructor, became frustrated that no one school could support Eliza and her younger siblings Breda and Keller in their individual strengths. Why couldn’t there be an inclusive elementary school set up for all children to thrive?

In 2015, she decided to create an inclusive school for kids with disabilities and their able-bodied siblings.

Kids work on painting and decorating a wall at the new UP Academy.

Students decorate the wall at UP Academy.

The determined mother sought funding, secured a lease, raised awareness, and reached out to her community to recruit and admit kids who would benefit from everything the school would have to offer. The new school, UP Academy, gained 501c3 status in December 2015.

Then the unthinkable happened. Eliza passed away in her sleep in March of 2016.

“It was completely unexpected,” says Tanya. “Eliza was fine and was having fun but one Friday she came home from school early because she was tired and not feeling well. I laid her down for a nap and told her I loved her. Our nanny was there to care for all three of our children so I went to the grocery store.

“When I checked on Eliza later she wasn’t breathing and her lips were blue. We did CPR until help arrived and Eliza was transported to the hospital where they did all they could. But there was nothing more the doctors could do. Walking out and leaving her behind was one of the hardest things I’ve done in my life.”

Despite her grief, Tanya could not give up on the school.

“I needed to find a way for the grief to serve me,” she says. “My family needed me to still be a mother and wife, and Eliza had taught me about ableism, education, and empathy. I had learned too much to walk away. I could lay in bed all day or use what I have learned to help others. There were still many families of children with disabilities who couldn’t find a fit for their children in the education system. To honor Eliza and to help them, I needed to work to create change.”

For the next two years, Tanya continued to build the school and welcomed her first group of students in 2018. There were plenty of challenges. The school’s first building lease fell through but Tanya persuaded a local church to let her use their rooms for a time. Eventually another location was found and the school has had a permanent home in San Mateo for the past three years.

With 20 students enrolled in UP Academy, Tanya is considering opening another location next year in the San Francisco Bay area. It is her vision to encourage other parents and educators to launch their own schools with a course she created, the Rebel Educator Accelerator.

“When we all work together, we can be more creative and achieve more,” she says. “Our vision for UP Academy is to build a method of education that can be shared and replicated. By teaching, training and sharing our curriculum with other schools we can serve more students in new and innovative ways.”

There is not a day that passes without Tanya thinking about her daughter who continues to inspire her.

“Eliza was sweet and kind,” she says. “She loved people and spending time with her friends. She was stubborn and wanted things to be done her way. She made decisions quickly and stood by them. We still have a dish we call Eliza Guacamole, which is smashed avocado and banana.

“It’s important to remember that despite any disability, all kids want to play, learn and make friends. Everyone needs a place to belong. Inclusivity is life, it is love, it is understanding and empathy, it is the thing that allows us to learn and work and play together.”

[ends]

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.)

Kristen Allison, PhD, CCC-SLP. A smiling woman with long blond hair wearing earrings and a light grey sweater.

CP NOW’s Research CP Award Goes to Communication Researcher

 

CP NOW’s Research CP Award Goes to Communication Researcher

Dr. Kristen Allison

 

We are proud to announce that Dr. Kristen Allison has been selected to receive CP NOW’s Research CP Award! Dr. Allison is an Assistant Professor in the Department of Communication Sciences & Disorders at Northeastern University and is the Director of their Speech Motor Impairment and Learning Lab (SMILe). She has extensive experience working with children who have neurodevelopmental disabilities as both a therapist and researcher, and is passionate about improving speech and communication outcomes for the cerebral palsy (CP) community. Through this award, Dr. Allison would like to urge the development of more personalized and participation-focused approaches to speech-language interventions for people with CP. She also aims to equip parents and caregivers with information to help them better advocate for the most impactful speech-language services.

CP NOW partnered with the Cerebral Palsy Research Network (CPRN) to create this grant award. Our goal was to advance the community’s research priorities identified through our Research CP program. We invited researchers to submit proposals up to $30,000 that would advance the Research CP agenda while also supporting the strategic goals of both CP NOW and CPRN. Dr. Allison’s proposal best met our conceptual criteria while scoring the highest for overall scientific impact. We are particularly excited to support Dr. Allison’s work in the area of communication because of the lack of research in this field, and its potential to improve the lives of those with CP and their families.

CP Research Network, CP NOW and CPRN Merger

Dr. Allison’s project addresses two of the key questions identified by the Research CP initiative:

  1. “How do we best maximize functional independence and life participation of children and adults with CP?”
  2. “Which interventions are associated with better functional outcomes, controlling for GMFCS level, age, and comorbidities?”

How does Dr. Allison’s project relate to these Research CP questions?:

“Communication is an essential and understudied component of independence, life participation, and functional outcomes for individuals with CP. Over half of children with CP have communication impairments that negatively affect their social participation and quality of life. Despite the frequency of communication difficulties among children with CP, there is a critical lack of knowledge regarding how children’s speech and language profiles influence their participation in social activities and interactions. This knowledge is essential for designing speech-language interventions that maximize participation and quality of life for children with CP. This research would advance these research priorities by improving understanding of how communication profiles of children with CP relate to participation in life situations. This would provide the foundational knowledge needed to develop effective speech language interventions for children with CP.”

What led Dr. Allison to focus on communication research in CP and why is the CP NOW award important to her work?

“My interest in communication outcomes for children with motor disorders stemmed from my clinical work as a speech language pathologist at Kennedy Krieger Institute (KKI) in Baltimore, where I worked from 2005-2011 and treated children with various developmental and acquired neurological disorders, including many children with CP. The majority of children on my caseload had motor disorders that affected their speech production and functional communication, and I found little evidence to guide treatment decisions.

“Universally, parents talk about the importance of communication to their child’s ability to make friends, participate in school and recreational activities, and to their eventual independence. My prior research has largely focused on understanding the speech and language presentations of children with CP and identifying factors that relate to speech intelligibility, and I want to expand that work to better understand how communication factors affect participation. I believe that better understanding the participation barriers that result from communication impairments will help pave the way for development of speech-language treatments that more effectively maximize functional communication outcomes for children with CP.”

Why does Dr. Allison feel that having answers to her research questions are important to the CP community?

“Caregivers, physicians, and speech-language pathologists need to understand differences in the participation barriers faced by children with different communication profiles <ie augmentative communication device users versus individuals with speech who are more difficult to understand> in order to effectively work as a team to help children with CP surmount these barriers and reach their potential. This project aims to generate information that medical professionals and caregivers can use to better identify children with CP at the greatest risk of participation restrictions due to their communication impairments, and help prioritize speech-language therapy goals most important to maximizing participation.”

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Congratulations to Dr. Allison! We are grateful for her commitment to the CP community and to individuals with CP and their families who have struggled to find meaningful communication solutions. CP NOW is grateful to all of you who helped make this project possible and who continue to help us meet our mission to optimize the lifelong health, wellness, and inclusion of people with cerebral palsy and their families.

A smiling young girl with curly dark hair wearing a black sweater and jeans in a powerchair next to a store’s clothing section.

Learning to let go

Learning to let go

 

Last week at our neighborhood’s annual Halloween party, I thought about how much Lillian Maya has changed over the last ten years that we have lived here.

During our first five years in this neighborhood, we skipped trick-or-treating because it was too overwhelming for her. She did, however, always want to go to the neighborhood Halloween party. Though we always went, we usually ended up leaving early because something would happen that would upset her and that she could not move past. It was also very difficult for us to see her peers running around and playing together, while she sat in her wheelchair on the sidelines, only periodically and briefly able to interact with them. They would occasionally stop by and say hello when having a bite to eat, or when their parents would pull them over to say hi to her.

But now, it’s different. Now twelve years old, she is very confident and outspoken at these parties and she also enjoys trick-or-treating and visiting with our neighbors. She goes from person to person and engages each of them in thoughtful conversation. She has transformed into a confident young lady who has learned to more calmly express herself even to others who have unknowingly upset her.

This year, just as I leapt into HER conversation, thinking I was trying to help her, she taught me a lesson. I jumped in to ensure that our neighbor didn’t walk away from her, or dismiss her amazingness, because her slower response time didn’t allow her to answer a question right away. I said, “Lilly, Dr. Lebel just asked you a question. What are you thinking about?” And she said, “I’m thinking about the fact that I just saw my dad roll his eyes at me after I said I wanted to go trick-or-treating!”

Blake, her dad, didn’t think she noticed his eye roll because he is subtle with his facial expressions. Despite Lilly’s visual impairment and facial blindness, she can read emotions perfectly. Her dad was startled that she noticed. I was proud. I told her, “Get him Lil! Don’t let him get away with anything!” And she won’t, and she doesn’t-with any of us. And I realized again as I have so many times these last few months, that Lilly can handle herself. She won’t let anyone underestimate her. In that moment when she paused longer than most, and temporarily ignored the question being asked of her, she was slowing herself down and restraining herself from yelling at her dad in public. And I incorrectly assumed she got distracted by something inconsequential. Like many pre-teens she is often being reminded to watch her tone with her parents, something she has been working on. This was a very important pause!

It’s so easy, even for me, one of Maya’s biggest champions, to accidentally slip into the old habit of assuming she needs me to help her manage her social interactions. She can speak up for herself! If our neighbor had walked away, she would have rolled over to him and explained that she wasn’t ignoring him but needed an extra minute to process her feelings. It would have been fine had I not intervened. Thankfully she forgives me for these old yet well intended maternal habits. We are both learning to navigate social situations with more ease and humor. As she gains more confidence, I become increasingly humble, a dynamic that I think is a good sign that we are on the right path, her as an emerging young woman, and me as a mother learning to let go.