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

Preparing for College – Part 3

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

In the third installment of her inspiring story, CP and triplet mom Carol Shrader shares how she watched her son Benjamin, who has spastic quadriplegia, flourish during his college years…

The night before my son Benjamin began his freshman year, I could not sleep. I worried all night long.

“I know, right?” my husband Wade consoled, observing my nervous disposition. “I have been thinking about this day for 18 years!”

Benjamin, our triplet with spastic quadriplegia, lived at home with us and his younger sister Cate for the first three years of college, but getting around campus independently was still a big deal.

He was only a week and a half into the first semester when we hit our first snag. Benjamin was heading across campus in his wheelchair with a fellow student and following her lead. When she pointed at the curb where they needed to cross the street and asked him if he could make it, he assumed it was flat. Unfortunately, his depth-perception issues prevented him from knowing for sure. It wasn’t flat. He drove right off the curb.

His professor called me, and I rushed to the campus to find my shaken son, clearly in pain and surrounded by college kids, security, and the head of the theatre department. The footplates on his wheelchair were the only thing that prevented him from landing on his face. His feet still took the brunt of the 300-pound weight of him and his wheelchair.

I have never wanted to jerk back control of a situation more – and it was clear I needed to.

Quickly rearranging my schedule, I ensured I could be on campus the rest of the school year. I assisted between classes, shuttling Benjamin between the upper campus and the lower campus where theatre classes were held. I brought him lunch. I took care of his toileting needs. I brought him back to campus for late night events and drove him wherever he needed to go, ensuring he could fulfill his college kid schedule.

At the same time, I worked to find ways to help him achieve independence. I began by phoning the ADA compliance officer and asking for the sidewalks to be revamped on campus. They needed ramps so Benjamin could navigate them safely. When the ramps were consistently blocked by mail delivery vehicles, maintenance, and even professors, I called the dean.

With problems still arising, I called the university president and, in my sweetest Mama Bear voice, told him that Benjamin could not succeed at his college if he could not ever get into the classrooms. A few weeks later, every ramp on campus had been repainted with the words “DO NOT BLOCK” in bold letters.

Meanwhile, Benjamin worked with the ADA office to secure a scribe for tests. The professors assigned a student to copy their notes for him. I was his scribe at home for each assignment. We even burned the midnight oil together, working on a 24-hour theatre assignment to write a play overnight so his team could memorize lines and perform them the next day. Poor Benjamin had to dictate to a scribe who fell asleep between lines.

The triplet’s freshman year continued to be a long year of learning for all of us. Mason was doing well, living a relatively independent life on campus at his college. Claire, my triplet without cerebral palsy, had moved onto campus about half an hour from our home. Throughout her four years, she called, texted, and sent video messages. Sometimes she would share a funny story about life on campus; sometimes, she just needed her mom and emotional support.

When April arrived, I noticed a shift in Benjamin. During a course selection meeting with his advisor, he took an assertive new tone.

“I need to arrange my schedule so that I am at the upper campus for three days a week and the theatre campus for two days a week or vice versa,” he said. “I need for my mom to be able to leave me on campus.”

By the time Benjamin began his sophomore year, he had a personal care team trained to assist him. Having a personal care attendant meant he could be independent of me and could organize his study time, extra-curricular activities, and classes the way he wanted. By his senior year, Benjamin felt confident to move into a newly built dorm with accessible units. It was an enormous step.

Initially, Benjamin didn’t love staying in the dorm, but he grew to enjoy his independence. It was empowering for him to be in charge of his schedule, meals, and life. The accessible dorm and the ultimate willingness of the college administration gave him this opportunity. He had a great college experience participating in theatrical productions as both an actor and a dramaturg and was elected to homecoming court twice in four years.

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

Benjamin Shrader at a college graduation celebration.

Benjamin graduated Magna Cum Laude with a major in dramatic writing and a minor in political science. When he presented his final script as a read-through performance for his senior project, every single one of his team of PCAs was in the audience because they were so invested in him.

His brother Mason was recently accepted to his second Master’s program in Anthropology, focusing on Bio Archaeology at Texas Tech. Claire is currently in her second semester of Occupational Therapy School at Thomas Jefferson University in Philadelphia.

Claire enjoyed a semester studying abroad in Argentina and founded sibling workshops for the brothers and sisters of differently-abled children worldwide. When she got an internship with an autism foundation, she discovered they had nothing for siblings, so she created a program. She went on to graduate Magna Cum Laude with a major in Spanish, a minor in English, and all her pre-occupational therapy courses.

When I reflect on the triplets’ journey, I would like to call the educators who didn’t want to invest in their potential. I want them to know that those little preschoolers they thought would place an undue burden on their teachers graduated with honors – lots and lots of honors.

I would like to tell them that when Benjamin rolled across the stage with his diploma, the faculty were the first to stand in what turned into a standing ovation throughout the graduation hall. Those faculty did not stand because Benjamin had been a burden on their teaching. They stood because he worked hard in their classes, he engaged on a day-to-day basis, he encouraged his fellow students, and set the bar high for their performance.

I would like to show them photos of Mason digging in the ancient acropolis in Majorca and receiving his hood for his thesis. I want them to read his undergraduate thesis on disability in the ancient world. I want them to know that his honors project won the Phi Beta Kappa award for best honors project at his school. They missed the chance to list this amazing Summa Cum Laude graduate and all of his accolades among their alumni.

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

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

They also don’t get to brag about our soon-to-be Occupational Therapist Claire who is already changing the world for young people with CP and their families.

College looked different for each of my three. But they each found the school that matched their needs, the path that worked for their personal dreams, and made it not just a possibility but a reality.

College IS possible for young people with CP. They can make their mark and change the world. They can recolor the way society views students with CP. They can affect change. They CAN succeed.

Mason Shrader on an archeological dig in Spain

Preparing for College – Part 2

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

[In the second installment of her moving three-part story, triplet and CP mom Carol Shrader describes her son Mason’s experience of finding independence as he left home for college for the very first time.]

When you’re a mama bear who has raised four children with very different needs, it’s instinctive to be a helicopter parent. But as I stood on the sidelines watching a college administrator empower my son Mason, I knew the time had come to take a backseat.

“Mason, I’ve heard what your mom thinks you need,” he remarked. “What support do YOU think you need to be successful?”

He may not have made my list of favorite people right then but, as Mason replied with his thoughts, I recognized he was encouraging my son to take charge and have a voice in his own support structure. He was also empowering me to hand over the controls. I could tell by Mason’s face that he was happy. I knew this was the place for him.

Mason was born with spastic diplegic CP, and while he is physically more independent than his brother Benjamin, who has spastic quadriplegia, he has a longer list of medical issues.

When my triplets’ college years arrived, our first hurdle was to find the proper support for our sons to sit for their SATs. I spent hours finding a test site that provided the accessible space we needed for the boys and would allow for scribes to help them write their answers. I filled out multiple forms to ensure the scribes would be permitted and assembled the required medical documentation.

With all the approvals in place, the first test date approached. But even with the best-laid plans, there were obstacles we could not anticipate. My trio was as prepared as I could help them be. They were ready. Then the school called the day before the exam. The scribes had decided they didn’t want to work that Saturday, and the school could not replace them. They would “try” to hire someone for the next test date. Claire took it that day, but Benjamin and Mason had to reschedule. They ended up taking the SAT twice and gained good scores. The relief would carry us through the college application process and all that it entailed.

Our college wish list consisted of schools with excellent access, a manageable student population, and programs of interest. We visited campuses all over the country. We toured schools in Philadelphia, Minneapolis, Chicago, and their more expansive geographic areas, and checked out small liberal arts colleges in California, Mississippi, and Arizona.

We saw great colleges with insufficient access and colleges with excellent access but seemingly a million students. In the end, all three of my triplets chose small liberal arts colleges that offered them an intimate learning environment.

Once Mason had secured his favorite college choice, I helped him put everything we thought he needed in place to live independently. While his campus was only 15 miles from our home, we had made a cross-country move just a few weeks before college started. We had to find Mason doctors to manage his cerebral palsy and his related high blood pressure caused by problems with one of his kidneys, as well as his ulcerative colitis. I had equipped him to talk to doctors himself, but I had failed to teach him to talk to pharmacists. We would have more than one tense mother and son discussion about refilling meds BEFORE they ran out. Equipping him to call in his prescription refills in time and pick them up before he missed a dose was a skill I had overlooked as I prepped him for college. The truth is you can’t predict everything, and you will always be problem-solving on the go.

Mason navigated campus with an electric scooter and his power sticks. Like most moms sending her first born to college, I worried a lot and followed all the campus social media, hoping to get a glimpse of him without nagging him to send me photos.

I was nervous about the electric scooter he took to navigate campus. What if it had negative connotations for him? There was no need to worry. It didn’t. When he joined a fraternity, the president made a point of climbing on the back of Mason’s scooter with the official flag. “We’re going in last!” the president enthused. Staff and students together nicknamed that scooter and were disappointed when rain the weekend of graduation prevented “Bocephus” from attending the swiftly organized indoor ceremony.

Mason threw himself into campus life, serving his fellow students as a resident assistant in the dorms. He was elected student body senator.

When Mason called home his needs varied from emotional to physical, to help with an essential decision like which bow tie matched which shirt. My personal favorite phone call was when he needed me to stop by campus to button the little tiny buttons on his dress shirt.

Mason’s college was not perfect from an accessibility standpoint – the sidewalks were in a deteriorated state, and navigating them in the scooter could be hazardous. The beautiful old buildings had elevators that broke down and didn’t work almost as often as they worked, but the administrators were committed to Mason and his needs.

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

He graduated Summa Cum Laude in four years with a major in Classics (Greek and Latin), a major in Anthropology, and a minor in Archaeology. His picture hangs on the wall of the student center as one of just four students in his graduating class chosen for the Hall of Fame. Mason earned this accolade because he took the heart his school poured into him and gave it back with dedication.

Today, Mason is finishing up a Master’s in Classics at Texas Tech University. Before the pandemic, he was living alone, on campus a thousand miles from home.

Whatever the problem, Mason has taken it in his stride. Despite living independently, fine motor skills are challenging, but we work out the solutions.

When he started to look like a hairy mountain man with unkempt hair, beard, and nails, we organized a reconnaissance day sending him on Uber rides around the city to find somewhere he could get his hair and beard cut plus a manicure and pedicure. Now Mason knows exactly which strip mall can serve all those needs and heads there every six weeks.

Mason has CP which has thrown some curveballs his way over the course of his life. But when he lectures, cerebral palsy is the last thing on his students’ minds. Recently, I had the opportunity to speak alongside Mason to a class of students working on their masters in special education. We were in fact, lecturing about CP and the impact these students would have as teachers. But when Mason started speaking about his archaeological research, the entire discussion shifted and the previously quiet class began raising their hands to ask questions. Even they, who were there specifically to discuss CP, had completely forgotten that Mason is affected by this challenge.

I can’t help beaming with pride.

(For more information on preparing for college, visit this resource developed by Carol Shrader from her experiences.)

Dr. Kristen Allison

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.”

———————-

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.

Lillian, Maya, at Mall

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.

Dog named Bear

Guest blog post: “Let’s get a service dog!”—or maybe not

This is a guest blog post for CP Daily Living written by parent advocate Jennifer Lyman

A while back, after the death of our beloved dog Bear, we went dog free for a while to see what it was like.  It turns out we didn’t like living in a household without a big black furry friend underfoot. We could have just gone back to the humane society, but, since our 14-year-old son has quadriplegic cerebral palsy, we thought a skilled companion dog would be better.  That way, we’d have a dog back in our lives and our son would have a companion who could potentially do so much for him. It seemed to be an obvious choice.

With some research, I found a wonderful organization that specialized in training golden retrievers and labs (our favorites!) for an array of people with disabilities. Then I started the process with an initial application and hit send. Shortly, we were approved to apply for a skilled companion dog, 16 pages, requiring an essay about our son, references from our vet, explanations into how our previous pets passed and photos of our family. Each handler would need to fill out a separate application. Before my son was born, I had conducted home studies for individuals looking to adopt or foster children: their application was much less intense! If our application was approved and if we survived the phone interview and in-person interview, then would come the one week training visit and then the two week training visit before we might be matched with a dog.

The application was very clear. It asked: What did we think a skilled companion dog could do for our son? I realized that I really didn’t know. Maybe it could calm him down if he was having anxiety, maybe it could press the buttons to open door for him (our old dog Bear could do this), maybe it could serve as a buddy and a conversation starter so that others might not be afraid to approach my son in his wheelchair. But I also realized that I had never seen my son with a dog that he was comfortable with, except Bear.  When strangers approached him on the street and would say things like “my dog loves kids and dogs are so great for disabilities,” he would be horrified at the unpredictable, wiggly, slobbery animal trying to give him a kiss. When I asked him if he wanted a dog, he said “no”, but I would think to myself, “Well, he doesn’t know what it’s like to have a dog that is so well trained and just for him.” I had never seen him with a dog like this. So I decided to call the organization and schedule a tour.

At the training facility, the tour guide—a parent of a grown son with disabilities— warned us to be prepared for a lot of work.  As facilitator, you are responsible for all keeping the dog on task, ensuring his needs are met and that the rules of the agency are always followed. The dog is not to go anywhere without you and your son. Meanwhile, my son is clearly on edge because there are dogs barking in the background and he can hear them walking around nearby. At a demonstration with a current trainee, we were impressed with all of his skills. He’d pick things up off the floor and deliver them to his handler in a variety of ways, he’d pull open doors, walk perfectly next to the wheelchair, and rest his head on his handler’s lap with just a simple command. Then she asked if my son wanted to pet the do, and he emphatically said no. We gradually convinced my son to pet one very calm dog.  It was a very sweet moment, but it certainly didn’t appear to me that it suddenly turned my son into a dog person.  He is not.

That’s when I began to get it.  The applications coordinator said something that really stuck with me: “He has to be highly motivated by dogs for this all to work.” This seems very obvious but I had never thought about it like that. Those that are a good match for service or skilled companion dogs will certainly benefit, and the organization we visited is clearly doing an amazing job in training and ensuring that these pups are matched to their perfect person. I am so thankful that, before we went too far down the road, we learned that a service dog isn’t right for our son. I’m not giving up on bringing a new pup back into our family, but now I clearly know who that pup will be for.  It just won’t be for him.

 

Guest blog post: "Let's get a service dog!"—or maybe not

Lillian Working with her Personal Trainer

Motivating your child with CP

Motivating your child with CP

Recently a grandparent of an 8-year old boy with CP asked me for ideas about how to help motivate her grandson. She said he is a happy child, but she is concerned that he is becoming a master at getting people to do things for him rather than working on developing skills himself. She believes he has learned to “work the system,” by taking advantage of people who “just want to make him happy”, but who do not necessarily encourage him to work to attain the skills within his reach. She wondered if I have any tips to encourage him take more responsibility for himself.

Her concerns echo those of many caregivers and are something we have experienced with our daughter Maya. In fact, assessing and addressing issues related to motivation is a common issue for children with disabilities. Parents of very young children may feel particularly confused because they are unsure of their child’s potential. Finding a balance between providing the right amount of support to encourage the child to attain new skills without pushing the child so far that he becomes frustrated, is confusing and often fraught with emotion.

Some parents feel guilty allowing their child to struggle because they understandably believe that having a disability is enough of a struggle for their child. However, offering help when help may not be needed can lead to longer term problems where the child becomes discouraged from setting and meeting his own goals. The flip side of this is if a child is too frustrated and does not experience feeling successful, he may lose his motivation to try.

With these issues in mind, here are some of my ideas about motivation that may be helpful in establishing a pattern of healthy goal setting and attainment:

OWNERSHIP

Ownership is the key to being engaged in an activity. For the child, ownership means choosing an activity and caring about it. Even a non-verbal or pre-verbal child can often select between several options. Choice is the main ingredient to ownership. If a child isn’t interested in what they are doing, they aren’t likely to keep trying.

When I see that Maya is not engaged in an activity or hear her complain about being bored, I try to present her with alternative choices that address similar learning needs and that she also enjoys. When I started actively using this approach I could often hear Maya breathe a sigh of relief and she expressed gratitude for having the chance to make a different choice. Some activities do not have room for making changes, like standing, and in those cases I offer to pair the activity with something she enjoys like listening to music or playing cards.

Motivating your child with CP- 2

MIX IT UP

Children with CP typically get so much therapy (OT, PT, speech, etc.) that the therapy itself can get stale, frustrating and eventually unproductive. Having a wide range of possibilities to vary over time can be helpful.

For Maya, we have moved toward offering her a range of activity-based approacheswith therapy intensives offered periodically. This allows her to remain encouraged and motivated to invest in her traditional therapy time and also to have a complete break from it as well. She needs to find joy in moving, otherwise she feels like we are constantly drilling her and focusing on what she can’t do with her body. Years of unceasing therapy can cause children to wonder if there is something wrong with them that they and others cannot accept. We have arranged Maya’s schedule to include activities she enjoys like yoga, swimming and therapeutic riding. These activities are fun for her and keep her moving, while offering her variety in her schedule to keep things exciting and fresh. When she has a break in her school schedule, we are likely to arrange an intensive therapy session, such as 3 vision therapy sessions in 1 week.

FIND OUT WHAT THE CHILD ENJOYS

All children, and adults too, learn more easily when they are enjoying what they are doing. Often, though, for children with CP, learning skills are presented in a dry and repetitive way. It is no wonder that they lose interest.

When Maya was a toddler a developmental pediatrician suggested that we pay attention and support at least one thing Maya enjoys doing. For her it was listening to music. His suggestion was a great one. By focusing on what she finds pleasurable we try to pair some of her learning goals with what she likes to do. She can be having such a good time that she doesn’t even notice that she is learning!

In addition, we have found that when she becomes interested, or even passionate about something, it seems to kick start her motivation in other activities. As an example, when Maya was six years old she became very excited about playing cards. She has a vision impairment and it’s pretty difficult for her to manipulate things with her hands. But she was determined. It began very naturally with her just moving cards around on the floor and then slowly trying to pick them up one at a time. Then she started studying different aspects of the cards and she worked to decipher them from one another. She practiced constantly and as she developed new skills she became motivated to continue and play more difficult games. One thing led to another and now playing cards is one of her favorite things, but it also led to interest in board games and solving puzzles, something I never thought would be possible for her.

Motivating your child with CP- 3

HAND OVER HAND IS NOT HELPFUL

When therapy is “done” to a child (like a car mechanic fixing a part) it is ineffective. The literature on brain plasticity shows conclusively that initiation by the individual is a key ingredient for learning, for change.It is important for children with CP to find ways to discover on their own. Even very little discoveries can be helpful.

SET GOALS

I have found great value in tailoring Maya’s activity schedule to specific goals. Having these goals in mind helps us target how she should spend her time, in therapy and in other areas of her life. As she has gotten older she has become increasingly involved in setting her own goals. It has been useful to prioritize her goals in terms of what she needs, what she likes and when it is appropriate to focus on some things and leave other things for later.

For instance, this year we have prioritized improving her vision. It became clear to us that Maya’s academic progress was being impeded by vision problems. She has attended vision therapy, with periodic intensives, to get a better handle on reading and distinguishing words.

Last year Maya said she wanted to work on dressing herself. I set up a series of OT intensives while she was on her school break. She had her own “homework” to do regarding these goals and she took her assignments seriously.

One important aspect of setting goals is to make the goals achievable. Some tasks may need to be broken down into tiny steps so that the child experiences success. Without a feeling of accomplishment no one wants to move forward.

Motivating your child with CP- 4

MAKE A SCHEDULE

It is important for the child and the caregivers to make a schedule for rehabilitation activities. Because children with CP often have so many areas in need of attention, it would be conceivable to do therapy all day every day.  However, that can negatively impact on the child’s and the family’s quality of life. Everyone needs a break.

When I think Maya (or I) am getting weighed down with too much therapy I ask myself “What is this or that rehabilitative work adding to Maya’s life?” We try to arrange Mays’s rehabilitation work with an equal balance of just plain fun and relaxation time. As Maya has gotten older we actively include her in developing and knowing her schedule. This makes her a part of the process and gives her a sense of ownership over her time.

ENLIST OTHERS

We have found that sometimes other people (not her parents) can motivate Maya in a way that we can’t. It can be natural, on occasion, for a child to pay more attention to a therapist or doctor than to a parent – even when the professional says the same thing that the parent said. I have found that sometimes I ask an OT or PT (or even a peer) to encourage Maya or redirect her because my words don’t seem to be getting through to her.

Motivating your child with CP- 5

All in all, it is hard to find the right balance between encouraging, cajoling, insisting and bribing the child with CP to be motivated to work to decrease their limitations. Determining where to push and where to back off isn’t easy and may change over time Also, the range of motivation for children is enormous; some children are more resigned to their status quo than others.  This is true of children without disabilities too. Each of us has a different personality and character and we ultimately have to embrace some of these qualities. Motivation itself varies with stress level, maturity, developmental age, the experience of success and the relationship between the child and the caregiver.

Jennifer is a parent who has struggled to identify and support her child’s motivation,

“Our 14-year old son has truly been difficult to motivate. Despite our best efforts and for reasons we may never understand, maybe he tried and failed too many times, the expectations were too high, the tasks were too difficult, or the medications wore him out, we have learned to give him a break and give ourselves a break. We take time to reset, renew and meet him where he is at rather than where we know his capabilities lie. Sometimes this is the best we can do.”

It’s not easy to let go of possibilities if you believe your child’s potential is unmet. Each parent has to be comfortable with the decisions he or she makes in deciding when to push and when to pull back. One tool I have found helpful in building balance into our daily life is the F-words. The F-words framework was deigned to help families who have children with disabilities approach their child’s development holistically.

The F-words include the following areas of focus:

  1. Function
  2. Family
  3. Fitness
  4. Fun
  5. Friends
  6. Future

    Motivating your child with CP

    Cerebral Palsy: The Six ‘F-Words’ for CP

You can read more about the F-words on the CanChild website: (https://www.canchild.ca/en/research-in-practice/f-words-in-childhood-disability

Using the F-words doesn’t have to be a labor-intensive exercise. Over the years I have naturally incorporated them into a mental checklist. Whenever I feel overwhelmed or just wonder how we are doing as a family, I self-assess whether I think we may be neglecting one or more of these areas. The part that can be difficult is adjusting schedules to make room for what you may be lacking.

Establishing a routine for checking in with yourself and your family can help you master the art of knowing when it’s time to shift your energy around and also feel confident in doing so. Every time I have made an adjustment to reallocate our time and energy to honor one of these areas it has strengthened our family and sometimes changed our perspective and approach to raising our daughter.

Michele Shusterman Holdering her Newborn Daughter

When a parent faces the world of early brain injury and cerebral palsy

 

When a parent faces the world of early brain injury and cerebral palsy

Imagine hearing these words spoken about your baby: Brain Injury. Neurological Disturbance. Infant Stroke. Cerebral Palsy.

Do you shudder and wish to turn your attention elsewhere as you read that first line? It’s scary. I understand, but I rarely if ever share the dark side of CP and what over a million other families face so please keep reading. Part of awareness is pride and acceptance, but the other side of awareness is helping society to understand the challenges our community faces and our community’s list is long.

-Imagine praying for your child’s life and bargaining with GOD. I DID THIS.

-Imagine not having an organization to turn to for support or a supportive document/guidebook to hold in your hands. This is what we faced, but now we have CP NOW and the CP Tool Kit!

-Imagine not being able to find a reliable online source of information on infant brain injury or cerebral palsy. This is what we faced but now we have our resource website and blog called CP Daily Living and our non-profit CP NOW (and we are working on merging them)!

-Hearing that nothing can be done for your child and to go home and love them and wait and see how they develop. This is what parents typically heard when Maya was born 12 years ago, but they are hearing less of it now and are being referred for early interventions services. 

-Hearing that your child may never walk, talk, learn, hear, or eat on their own.

-Feeling that you are to blame for what you are hearing about your child.

-Feeling anxiety, fear, anger and unceasing guilt about today and the future.

-Feeling physically exhausted because your baby has an infant sleep schedule for years.

-Wondering how the next phase of development may go and what new symptoms or diagnoses may emerge–because the brain is the control center for everything and our knowledge is so limited.

-Hearing that the majority of people with CP are in chronic pain and that there aren’t good solutions.

-Wondering how you will gather the strength to physically care for your growing child who can’t stand on their own.

-Hearing that just as you busted your behind to help your child get ahead that people with CP start to decline in mobility and function very early in adulthood.

-Hearing that you are almost at ground zero yet again because there isn’t enough research to help you or your medical team know how to best help you (as and adult with CP) or your child address their symptoms.

This is just a small window into what parents of children with CP face and some of what I personally have faced and continue to face as a parent whose baby suffered an infant brain injury. This is why CP NOW exists. Some of these circumstances have already improved and I believe there is tremendous potential for change, but we have work to do!

This is why I, a mother have set my fear aside and never hesitate to share my perspective and to speak out against people and ideas that hold this community back or don’t give people with CP their best chance. I have spoken out at medical conferences, in books, journal commentaries, at our local hospitals and at NIH. Getting this community ahead and helping my daughter live her best life is what keeps me up at night.

These families and much of our adult population constantly find themselves swimming against the tide. They are looking for support, hope, inclusion, freedom from pain and knowledge to advocate for themselves and the best treatments and opportunities. CP NOW exists to develop the supportive educational materials that have never existed for people with CP and their families and to advance research and health and wellness programming that facilitates inclusion and participation in life.

We exist to offer people with CP and their families the best possible life–NOW.

Will you donate $12.00 or more to CP NOW today to honor Maya’s 12th birthday fundraiser for CP research? We are well on our way to reaching our $25,000 goal but we need your help. You may donate here in honor of CP Awareness Month 2019: cpnowfoundation.org/donate

-Michele

Vision Academics; Lillian with iPad

Helping Maya Access Visual Information–Reading & Academic Access Tools

Helping Maya Access Visual Information--Reading & Academic Access Tools

 

It’s taken me a long while to get Maya set up at school so that she can access reading materials on her laptop computer/iPad from various electronic and print sources. As I learn about new tools I share them with all of you to use for yourselves, your family or to pass along to others. Please know that I am not a tech person so I may not get all of the terminology right, but I have done my best to get you started:

Sending print documents to electronic devices for easier reading/completion:

1. Microsoft Office Lens is a scanning app that is now available on Androids and Iphones. You can use this app to take a photo of a print document, article or worksheet–even a label. Once you snap the photo you can use a Microsoft accessibility tool called “Immersive Reader” to read it aloud to you–however you can’t save it there so, it will ask you what program you wish to send it to. Here is the key piece, you can drop, save and organize documents into Microsoft One Note (and it may already be available in some versions of Word) and use the immersive reader tool there–if your version has been programmed with it. Please note you must use the same login on the phone or other devices as you do on the computer where the child/person is working to ensure the document is sent to where you need it to go. **microsoft is constantly rolling out updates and adding immersive reader to more platforms. Check out this article from Microsoft about immersive reader updates: https://www.microsoft.com/…/immersive-reader-comes-to-outl…/

Helping Maya Access Visual Information--Reading & Academic Access Tools- 2

2. Microsoft’s One Note is a digital filing system that operates like a comprehensive planner and document organizer. Once you drop documents into One Note you can then pull up the document and click on “View” and then “Immersive Reader” to have it read the document aloud. If you don’t wish to use this function, you can simply pull up the document you scanned and enlarge it, mark it up and highlight it. This is handy for finding the main idea/s and re-reading materials for missed information. Maya had an assignment last night to provide a summary of an article and having access to these tools made it possible for her to access and manipulate the material herself. In the photo below we imported an article using Microsoft Lens and then selected the “Immersive Reader” function under “View” so that Maya could listen to the article first. It doesn’t always read the text perfectly, but it’s quite good.

Helping Maya Access Visual Information--Reading & Academic Access Tools- 3

3. The Snap Type Pro app can be used to scan worksheets that an be enlarged for easier viewing and you can mark up the document and type in answers (no read aloud function). We have personally found it particularly handy for math worksheets. Once you are finished you can send the document by email to your teacher or wherever it needs to go. Here is a demo I found for completing a spelling worksheet: https://www.youtube.com/watch?v=PQMt0jBQGJY

____________________________________________________________________________

In previous posts I have gone over the different ways we access and manipulate digital materials, but here is a brief recap:

For books Maya uses the digital library called Bookshare. https://www.bookshare.org/cms/

We have paired her Bookshare access with an app we love called Voice Dream Reader. http://www.voicedream.com/. Voice Dream allows us to import books and adjust the type style, size, background color, highlight, take notes and more. It also allows Maya to isolate lines of text and block out the surrounding text for easier reading as well as using her finger to follow text without the screen moving. When she gets tired she can turn on the text to speech function and have the print read aloud to her.

Helping Maya Access Visual Information--Reading & Academic Access Tools- 4

You can also import documents into Voice Dream (no jpg files) but so far the Microsoft Lens program mentioned above is much more streamlined, flexible and reliable for articles that aren’t in a very structured format (like Word).

Finally, whether you have an Ipad, iPhone, PC, or Apple computer, check out the Microsoft and Apple accessibility tools/functions. There is a handy shortcut for having text read aloud on the iPad where you swipe two fingers down from the top. I also have found the browsers like Safari and Microsoft Edge to offer helpful reading tools: https://support.microsoft.com/…/windows-10-microsoft-edge-e….

These kinds of features are constantly being updated and there are so many! You can turn on text to speech functions and block out surrounding photos and ads on news articles and web pages. Here is an example of the reader view tool that becomes available in the address bar for many online articles in Safari (before and after photo below):

 

Helping Maya Access Visual Information--Reading & Academic Access Tools- 5 Helping Maya Access Visual Information--Reading & Academic Access Tools- 6

There you have it! This is our current arsenal of resources for supporting Maya’s vision and ensuring she can access and complete her academic work. I hope this helps some of you too! It’s taken a lot of hours of research, trial and error and emails to put these pieces together so please share this information to help others avoid some of the work I did.

P.S– You may wish to take a look at this article which offers an example of how a reading accommodation was implemented for a 4th grader and what kind of impact that had on her learning and self-esteem. It’s called Developing a Growth Mindset in Struggling Readers and it’s from the website thinkinclusive.us. It may be helpful to share with educators as an example that it’s possible to provide a reading accommodation.

 

 

A Young Lady in the Making

A Young Lady in the Making

A Young Lady in the Making

 

Maya’s therapist said to me that she feels Maya is finally getting used to coordinating her more grown up body. She has been changing so quickly over the last 9 months and it’s been very hard for her to keep up physically and emotionally. Even though it was hard for her, she had become somewhat accustomed to the patterns and quirks of her young body. But with these intense periods of growth, her strategies for managing her day quickly became unreliable.

Maya was already coping with lots of daily frustration. She had to regularly adjust her posture so she wasn’t falling over, she dealt with chronic pain, and worked through intense anger and anxiety from living with an unpredictable body and side-effects of medication. Once her body began to experience multiple shifts (hormones, emotions, muscles and bones, etc.) it felt like we were all wading through unfamiliar chaos. Maya was more frustrated with her increasingly uncooperative body, she was prone to losing her temper and then upset about it, and she had to integrate several medication changes. We went back and forth between disciplining her and feeling grief and sadness for how hard all of this was for her and how powerless we felt.

Looking back, I see how Maya’s changing needs led to a breakdown and reorganization of our household routines and inner resources. It’s been hard to explain to people close to us, even family, what this felt like and why we were unusually drained and temporarily unavailable. We were hibernating and upgrading the way we relate to each other and support Maya. We were helping Maya with her emotions, sorting through our own, watching her lose skills, rebuild them, monitor and adjust her medications and hormones and ordering new equipment and waiting for parts to adjust others.

Like most transitions we have faced since Maya was born, this was a process that we felt unprepared to manage with any kind of grace. I think many parents can relate to this regardless of whether their children have extra needs, but it’s particularly dramatic when your child has complex medical needs. With the help of an excellent psychologist and several doctors we have found great relief, but it took time. Even as we identified new strategies and resources for supporting Maya, they took time to gain traction.

It hasn’t all been bad, and some parts of Maya’s day have definitely gotten easier. She has better stamina, improved sleep and a broader perspective that makes it easier to ignore little things that used to bother her. It’s also rewarding, and yes, a bit scary too, to see her continue to learn and discover who she is and what the world is about. It’s hard to let go of the little girl we all had grown accustomed to relating to, but it’s time. Over the Thanksgiving holiday Maya wanted to watch videos of herself as a baby—repeatedly. After a while, she looked at me and her dad and said with a little sadness, “I know I’m not a baby anymore, but I will always be your baby, right?”. I couldn’t have said it any better.

-Michele

Maya's rhythm often leaves her out of the fold

Maya’s rhythm often leaves her out of the fold

“I can’t get my words out as quickly as I want to.”
#feelingoutofsync #adifferentrhythm

Last night as we were coming back from the Halloween party, Maya stopped at our neighbors house to get some candy. We were on the side of the road (our neighbor came down with her bowl) and she suddenly stopped talking and abruptly rolled to the other side of the street at full speed. She looked like she was heading into a ditch. I didn’t understand what she was doing and I thought she got angry about something and was storming off.

It turned out she heard a car coming and thought she wouldn’t be seen where she was sitting in her chair. She got so upset because I thought she was being rude and unsafe and conveyed that in my tone, but she said she couldn’t get the words out fast enough to tell me what she was doing. She felt embarrassed and frustrated.

Once I knew what was going on I told her I wasn’t upset with her. But she said SHE was upset. She told me it’s really hard for her because she can’t move and talk at the same time and people don’t always understand her or what she is doing. Even when she isn’t moving it’s hard for her to speak as quickly as her thoughts come.

I can’t imagine how upsetting this is for her. We often have talks about how her pace doesn’t match most people in society, but even I catch myself moving too fast and walking ahead of her. I have been thinking a lot lately about this issue of how Maya’s pace often leaves her out of sync with the flow of life. She has to hope that others will slow down and be with her in her rhythm and that requires people to consciously adjust their pace and be motivated to do so. Last night I watched the little children and her peers running around in groups, giggling and playing. I felt sad knowing that Maya was outside of their rhythm and wishing that it could be different. She seemed happy chatting with the adults, eating and introducing herself, but I still felt grief welling up inside of me. I had to tell myself that Maya’s experiences have and always will be slightly different than her peers. This doesn’t mean she is unhappy but sometimes I can’t stop myself from wishing that she could be in their fold.

*The picture I chose for this post is of Maya and one of her friends who is always willing and happy to slow down and connect with her in her own rhythm.

Maya's rhythm often leaves her out of the fold