A glossy black Labrador Retriever with a greying muzzle sitting inside a home living room next to a tall vase of flowers.

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

A young girl seated in a powerchair works on boxing in a gym with a personal trainer, who is kneeling in front of her.

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.

A smiling woman with curly brown hair in a ponytail, wearing a blue hospital gown cradles a tiny baby wrapped in blankets.

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

A young girl with dark hair is seated at a wooden desk using the onscreen keyboard on a raised iPad to complete schoolwork.

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 mother is kneeling and hugging her daughter, seated in a wheelchair, with their foreheads touching in a field of sunflowers.

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

Two laughing girls, one in a wheelchair and one crouching to meet her, turned towards each other in front of a black curtain

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

 

A smiling group of Cerebral Palsy Research Network participants are gathered for a photo inside a conference room.

Setting a consumer-centered research agenda for CP-Mission accomplished!

 

Setting a consumer-centered research agenda for CP-Mission accomplished!

Last summer, CP NOW and the *Cerebral Palsy Research Network (CPRN) hosted Research CP, a comprehensive program designed to develop a *consumer centered research agenda for the CP community. Because of this groundbreaking conference, the CP community has a prioritized list of research topics that are meaningful to individuals with CP and representative of what people with CP care about and hope to understand.

After receiving a community engagement award from the Patient Centered Outcomes Research Institute (PCORI), CPRN and CP NOW brought together a diverse group of people to represent the CP community. The group included individuals with CP, family members, personal care attendants, researchers, advocates and CP professionals—including neurosurgeons, developmental pediatricians, physical therapists, orthopedic surgeons, several past presidents of the CP Academy, representatives from NIH, and others.

Setting a consumer-centered research agenda for CP-Mission accomplished!- 2

The program began with a series of educational webinars about research terminology and the kinds of studies that CPRN could support. We then invited webinar participants to join an online voting process where participants proposed and ranked research topics. Finally, in June of 2017 we finished our program with an in-person workshop in Chicago, Illinois. Forty-seven invited participants met to discuss the top-ranking research ideas, share their personal experiences and insights about CP, and describe their visions for the future of CP research. Since our paper has now been published in Developmental Medicine and Child Neurology, I am able to share the results with you:

Setting a consumer-centered research agenda for CP-Mission accomplished!- 4

Through our online process, participants proposed a total of 392 ideas and cast 26,798 votes. During the in-person workshop, twenty of the highest ranking unique ideas were further discussed and analyzed. At the end, we consolidated these twenty ideas down to sixteen.

The top three research ideas-summarized:

  1. Research issues on aging with CP: Participants want research to focus on how to best treat adults with CP. They also wish to understand how to treat/support children with CP in order to prevent problems that often occur later in life such as pain, fatigue and functional loss.
  2. Research the best long-term exercise/strength training strategiesfor all levels of CP (GMFCS I-V). They wish to identify what will help each group improve overall health, function/activity and participation across the lifespan.
  3. Evaluate which interventions (surgeries, injections, medications and therapies, orthotics, equipment and training) produce the best functional outcomes. These outcomes should meet family and patient goals, be sorted by GMFCS level and age, and consider the presence/impact of other chronic conditions the individual may have (co-morbidities).

The top 16 Research ideas can be found in the published article.

Themes and sentiments I took away from the experience:

As a planner and participant of Research CP, the experience was more fulfilling than I ever imagined. The passion and diverse experiences that participants shared during the program made me realize what an extraordinary community we have. There was tremendous compassion for the concerns of the entire community and an inclusive vision for the direction of CP research. Participants conveyed a strong message that all gross motor function levels and all ages, without exception, be included in the prioritized research plans. This commitment led to a final list of broader and more inclusive priority research topics than we had anticipated.

At the beginning of the workshop several individuals read personal statements about their connection to the CP community and what they hoped the community could accomplish through this effort. There was palpable vulnerability and humility among the group that I will always remember. It set a tone of collaboration and mutual respect independent of one’s professional title or personal experience. One of the orthopedic surgeons shared that he wanted to sit and listen to the experiences of the individuals with CP and their family members more than he wanted to focus on consolidating our research list. At the same time, the community participants felt overwhelmed to have a diversity of leading CP professionals so carefully consider their experience and insight. One parent, Diantha S., came to the workshop as a personal attendant for her adult daughter Amanda. She referred to herself as a “no-nonsense, stoic woman who doesn’t cry”, but through tears she said,

“I came as a personal attendant for my 40-year old daughter and I was struck that my voice was heard and I’m so glad that you have included the voices of adults and children who have lived the life of cerebral palsy—for our voices to count is overwhelming.” -Diantha S. Elementary School Principal and Parent

The toughest and most emotionally difficult part of the program for me was hearing from our adult participants. Historically there has been little research on adults with CP and their needs. From 2001-2013, only four percent of government funded CP medical research focused on adults (Wu, et al). I felt deeply upset hearing about the chasm in knowledge, support, and resources for adults with CP. Several of them described what they referred to as a “cascading loss of function” where their bodies rapidly declined prematurely as they aged. They each said they felt unprepared emotionally and medically to face these changes. I was floored by the resilience and courage they shared and the way each had adjusted their lives around these changes. At the end of our program many of the doctors, therapists and parents remarked that these personal stories fundamentally changed the way they will approach the care and treatment of individuals with CP/family members.

Setting a consumer-centered research agenda for CP-Mission accomplished!- 5

 

Beyond these stories, our Research CP  program provided me with several more take-home messages. The group repeatedly emphasized the term  Lifespan Research and spoke about Improving Participation. Participants want to see long-term research studies that follow outcomes for more than just a few years—the length of typical research studies. For example, do surgeries that produce benefits twelve months later continue to produce benefits in ten years? There were also repeated requests to evaluate treatments and interventions by how they impact function (what can they do) and quality of life and not just the details of whether a muscle is not as tight, or a bone is straighter.

Setting a consumer-centered research agenda for CP-Mission accomplished!- 6

The CP community has a lot of work ahead of it, from determining which treatments work best and for whom, to understanding the impact of treatments into adulthood. It is time for our work to move forward and CP NOW and CPRN are working to widely distribute these community research priorities and to mobilize research around these topics.

The Research CP publication has an open access status (freely available) and can be shared among professional organizations, government/policy makers, researchers and granting agencies. We encourage you to help by sharing it among the CP community and the professionals you meet. CP NOW and CPRN will continue to work with our community representatives and partner organizations, such as the CP Alliance Research Foundation, to request that research funding be aligned with these community priorities. This will help us move closer to finding answers that will help people with CP lead pain free, healthier and more fulfilling lives. The outstanding participation and feedback from this program was better than we ever hoped for and we launched a group of very motivated participants eager to learn from each other. Together we will foster meaningful change for people with CP and we have come much closer to that goal through the Research CPprogram.

What’s next?

Stay tuned because we are planning Research CP 2.0. Our leadership team had a strong desire to revisit some of the research ideas that were outside of the top twenty. The voting process favored broader research questions over more defined ones. Still, we felt there were critical issues affecting smaller populations within the CP community, particularly those with more complex forms of CP, that we needed to open up to the community for further discussion.

A special thank you to the Cerebral Palsy Alliance Research Foundation and the American Academy for Cerebral Palsy and Developmental Medicine for supporting Research CP!

Setting a consumer-centered research agenda for CP-Mission accomplished!- 7

 

Notations:

*The Cerebral Palsy research network’s mission is to improve outcomes for people with cerebral palsy through high quality clinical research and quality improvement initiatives. It includes 28 centers throughout the US and Canada that collect data on individuals during office/clinic visits.

*Consumer is used here in place of the more commonly used term “patient”.

References:

  1. Wu, YW, Mehravari AS, Numis Al, Gross P. Cerebral Palsy research funding from the National Institutes of Health, 2001-2013. Dev Med Child Neuol 2015;57:936-41.
A screenshot of a webpage search with words reading: Results For “accessibility” No results found.

A letter to my Congressman who supported HR620-The ADA Education and Reform Act

A letter to my Congressman who supported HR620-The ADA Education and Reform Act

 

Yesterday I told my South Carolina Congressman what I thought of his support and vote in favor of HR620-The ADA Education and Reform Act.  I had just received a response to my letter asking him to vote against this archaic legislation proposal. His reply detailed his enthusiastic support for its passage in the House of Representatives. Fortunately, for the time being, HR-620 has been tabled in the Senate thanks to a successful Dear Colleague letter circulated by Senator Tammy Duckworth. I do worry however, that others will try to reinvigorate similar forms of this legislation down the road and could be successful in getting it passed. It is vital that as citizens we stay informed and advocate for protecting legislation that moves us closer to creating an inclusive society rather than rolling back time and making it even harder for people with disabilities to feel engaged in life and society.

One of the most frequently cited reasons for legislators stating that we need to change ADA relates to cases of frivolous lawsuits and the notion that individuals can be awarded damages by filing ADA claims. But this is a misguided and misleading headline because the problem lies with  attorneys taking advantage of reimbursement fees available under the law–not consumer damages which cannot be collected under ADA. As disability rights lawyer Robyn Powell so eloquently states in an op ed from the May 2017 edition of Rewire.News, “Frivolous ADA lawsuits…are not an ADA issue; they are a state and court problem. Indeed, ethics rules bar attorneys from bringing frivolous lawsuits. Rather than go after people with disabilities, attention should be focused on stopping these few bad attorneys”. 

In a recent blog post from the Disability Rights Education and Defense Fund they shared more about the interests on Capitol Hill that are pushing for these changes, “They say the law is needed to help local ‘mom and pop’ shops, while behind the scenes, powerful trade associations for wealthy corporations—everything from multinational hotel chains to big box stores and corporate coffee shops—are pulling the strings in an effort to gain support for regressive rollbacks to the Americans with Disabilities Act of 1990 (ADA)”. We can work on improving the education, compliance and support measures for businesses to uphold ADA, but we cannot weaken the existing legislation and still move closer to creating the inclusive society this law was intended to facilitate.

Below is a copy of my response to Representative Trey Gowdy. Perhaps my words will not gain traction with him, but I am determined to share my point of view with my representatives and others who don’t understand the epidemic of inaccessibility that still plagues our society. I’m not looking for perfection, most of the time I just want my daughter to be able to get into a place of business and use the bathroom (but certainly we can do better than this). If we go down the path of cutting and carving our ADA legislation, which is actually aligned with many state building codes that have been in place longer than ADA, I fear we will isolate people with disabilities even further.

 

A letter to my Congressman who supported HR620-The ADA Education and Reform Act- 2

Dear Representative Gowdy,

Wow, what a poor and disappointing response. I am quite clear on what Hr 620 does and doesn’t do. Perhaps you should spend a day or a week in a wheelchair and see how inhospitable and isolating the world feels to you. As my letter stated, I am the parent of a child who is a wheelchair user. Ever day we face new construction and buildings constructed well after the passage of ADA that fail to provide the most basic access such as accessible parking, an accessible route to the place of business and accessible bathrooms. In working through these issues locally (and there are so many I could make it a full time job) I have found tremendous apathy, particularly from large developers who submit compliant construction plans to our city and then decide to cut costs and take their chances building non-compliant structures [which trickles down to their tenants having inaccessible businesses].

You are quite out of touch with the experience of people with disabilities to think that this is an appropriate course of action for a society where many business owners we meet often [but not always] feel that following ANY accessibility laws are optional. The onus should NOT be on the individual with a disability who already feels isolated and apart from their community to bring forward accessibility violations. Do you know how long it takes for me to even get someone to pay attention to me about an accessibility concern–often months, or even years! What we need are enforcement and compliance mechanisms that work. The few isolated cases where attorneys pursued cases against business owners for small infractions of the law can be handled through strategies that are created in cooperation with the American Bar Association. Plus the financial damages that were sought were specific to the state law, not the federal ADA law where no monetary damages can be awarded.

Your summary and stance on this issue are poorly articulated and carry little weight with our family and many other people. ADA has been around for almost 30 years and I don’t want to hear that business owners don’t know and shouldn’t know that at the very least their businesses should be physically accessible to people with mobility impairments. Why don’t you try being a bit more creative in handling your concerns about business owners rather than putting up more barriers to ensuring accessibility to people like my daughter? The fact of the matter is that we have a huge aging population (and you too will be there some day) and they, along with other people with disabilities, comprise the largest minority in the US. It only makes economic and social sense to ensure their participation in society without further delay.

Sincerely,
Michele Shusterman

 

A letter to my Congressman who supported HR620-The ADA Education and Reform Act- 3

A letter to my Congressman who supported HR620-The ADA Education and Reform Act- 4

**Permission for the use of the two photos of above has been granted by the photographer Tom Olin. Thank you Tom!

For more information about the myths and truths about HR620 and related accessibility stories, check out these resources:

  1. From the NY Times and opinion piece by Luticha Doucette, “If You’re in a Wheelchair, Segregation Lives”
  2.  How did my representative vote? If you don’t like how they voted tell them your story and why you want them to think about this issue differently.
  3. DREDF-Disability Rights Education and Defense Fund: offers a huge list of resources and information on HR620.
  4. The ACLU offers this excellent piece about the myths and truths of HR620.

 

 

A delighted young girl wearing a blue fleece and pink trousers is pushed in a wheelchair across an ice-skating rink by a woman

#Transitions

Maya just turned 11 and along with that birthday has been a host of emerging transitions for her and for us. She is a pre-teen now and there are emotional changes, vast physical changes, academic assessments and decisions that we need to make like how she approaches reading and writing and how we physically support her throughout the day. Birthdays are always a little hard (some more than others) as I naturally take stock of where we have come from and where we are going. As a family there is typically a realization that we must loosen our grip on some long held goals and perhaps bring others more clearly into focus, like purchasing a lift and realizing that Maya isn’t going to make transitions without one.

But in my heart I want it all for Maya! I don’t want to give up any of our goals or even place some on the back burner. And I feel a bit like a child stomping her feet and having a tantrum about it. On the other hand, my body and spirit tell me a change is in order for my health and the health of our family. There are only so many hours in a day and only so much energy we all have to go around. This emotional struggle isn’t new to me but it always creeps up every time a transition and reordering of priorities is staring us squarely in the face. And with CP, the need for flexible goals and continuous adjustments is a necessary lifelong skill for the entire family (thank you to the adults with CP who have gently imparted this wisdom to me).

As I muddle my way through some pretty intense grief and move closer to the next phase of acceptance, I find a small measure of comfort and confidence in knowing that I have been in this space before, many times now, and have successfully shed my old skin–we all have. We may have to approach our day differently, make more time to get from one place to another, or say goodbye to some of our goals, but we still find laughter, fulfillment and room for new goals along the way. On the days where the noise of my emotions is so loud that I can’t plan my next step, I know that it’s time to stop, let the wave wash over me and let the pieces of myself and my plans reorder themselves.

Here we go!

 

#Transitions

 

Much love and strength to all of you,

Michele, CP NOW nonprofit and CP Daily Living blog

Our Story

Many people don’t realize that cerebral palsy (CP) is often the result of an infant brain injury. Our family faced this very frightening circumstance when our daughter Maya was just 34 weeks old and one week after she was born. It was an unexpected event and scary. The worst part about it was that when I asked my husband Blake (a physician) what they do for that he said, “Nothing.” I asked him this question again wanting to make sure I heard him correctly. He went on to say, “We wait and see.” To this day these words haunt me as one of the worst injustices of infant care that affects babies and their families for their entire life, my own child included. With my limited knowledge of medicine I knew there were strict and immediate protocols for adults who have strokes and brain injuries to ensure the best possible outcomes. How could there be no protocols for our tiniest humans with tremendous potential for change? Over a period of three years this question drove me to uncover a host of serious issues that were not being addressed for the CP community.

After Maya left the NICU (six long weeks) time moved along and we wondered if we would be facing a diagnosis of CP (because “wait and see” has also been the way CP has traditionally been diagnosed). Our feelings of anxiety and tension related to observing Maya’s development were overwhelming. Would she be able to sit, walk, talk, see, hear, be able to eat, and on and on? These are skills that many parents take for granted, but for the parent of a child who has had a brain injury they hold tightly to each moment hoping their child will keep gaining skills and improving. It’s beyond painful.

I rarely discuss cerebral palsy on our blog and facebook page in the context of fear, pain or difficulty. I do this purposely because I want people to understand and to see the potential in my daughter and other people with CP (and other disabilities). But at the same time, perhaps some of you reading this may not realize why I got into this work and why I remain so committed to it. I got involved because whether you are a parent or individual with CP, this is at times a very challenging and painful road and I knew it could be better. At the time Maya was born there was no national nonprofit actively working to support people with CP and their families. When we left the NICU, I couldn’t find a resource online that offered reliable, supportive and comprehensive information. It wasn’t ok and I decided to do something about it by creating the resource website and blog CP Daily Living and eventually our nonprofit CP NOW.

There is so much work to be done for this community but CP NOW is helping to mobilize change in the areas of community and clinical education, family support and funding pilot studies to bring new treatments forward. As 2017 comes to a close, please consider contributing to our work.

See our new historical timeline to learn about our accomplishments this year and our plans for 2018.

Donate today and help us meet our December fundraising goal of $5000.00! We are just $500.00 away.

With gratitude,

Michele Shusterman, President of CP NOW and Maya’s Mom