Growing Pains

Maya and me had some tough arguments today. They weren’t pretty–at all–and her Dad had to mediate between us by comforting Maya and interpreting my intentions. Maya is getting big which requires continuous adjustments to how we approach  supporting her physically throughout the day. I always try and give her as many opportunities to move and practice developing new skills (this is very important to her), but today what my heart wanted was not what my body wanted. Maya tuned into my frustration as I struggled to support her body and manage my own. My back just plain hurt and it wasn’t her fault, but I sure made it sound like it was. It was not one of my more stellar parenting moments, but it was a very human moment.

Maya cried and I was pretty upset with myself. She shouted at me, “How am I supposed to keep track of what movements hurt your back?!!” Well, she isn’t and I let her know that. I blamed her when I knew she was doing her best. She went on to cry about her body and feeling stuck in her wheelchair (which is part of why I push myself physically to give her many chances to use her body in different ways). It was very hard to remain present with her in that moment because it was painful for me to witness her pain and  know that I caused some of it by being so hard on her.

Then tonight something similar happened. I was frustrated trying to facilitate movements that are more difficult for Maya but that I think she may be able to attain with some practice. In the long run it would end one of the last transitions we have that require that we lift her. She tuned into my frustration despite my attempt to disguise it better. She became irate and I backed away and gave her space. Her dad again stepped in to try and explain my intentions. As I got her into bed I told her I was sorry and that I didn’t mean to upset her. She asked me to stay with her for a few minutes and then she said,

“As it turns out Mom I wasn’t upset with you. I was frustrated with my body and I got out of control and I am sorry.”

I told her I understood and that I was amazed she was able to process all of those feelings and ideas so quickly and honestly. When I was 10 years old I certainly wouldn’t have been so honest about my behavior and I do not know that I could have come to such a mature perspective on my own.

Ultimately, we decided on a new house rule that early morning and before bed are not good times for me (or anyone else) to have Maya practice movements that are harder for her. I think that sounds like a good plan. I know we will likely be making many more adjustments both physically and emotionally as Maya gets older. In some cases we will be forced to replace hope with acceptance as we face our limitations both Maya’s and our own. Hopefully, I will be able to negotiate these moments with a little more grace than I did today.

 

Karate takes center stage for Maya

I have heard may ambulatory adults with CP say how much they enjoy and have benefitted from karate. But, I never thought karate could be modified enough for Maya (a wheelchair user with spastic quadriplegia) to both enjoy it and physically challenge herself. She has proven me wrong once again. This year when she told me she wanted to participate in a karate class once a week, I worried Maya would be sitting off to the side and not moving much at all, while the other children practiced karate moves and played together. I didn’t push back because karate was built into her class time and I knew I could count on her to tell me or her teaching assistant if she felt awkward or left out.

During the third week of school, exhausted and moody during her after school physical therapy, Maya told me and her therapist that she was tired from her karate class that day. I thought she must be playing possum. As I watched her struggle to move, I considered the validity of what she said about being tired from karate, but quickly dismissed it. I truly didn’t think it was possible for her to exert herself so much with her upper body that she would be so wiped out. Over the next few weeks however, I realized karate provided Maya with personally meaningful challenges and more participation opportunities than I thought it would. The more I heard about  how she was challenging herself, the more I realized we had to make an adjustment to her schedule.

At first, I proposed she do less activity during karate so she would still have energy for therapy. Unfortunately, that didn’t work out because even with half of a karate lesson, she was still having trouble with her stamina and now, she was also upset that she was missing out on some of the karate class. Trying to come up with an easy solution, I half-heartedly proposed that she change therapists and therapy days if she wanted to continue. I never thought she would agree to this because she loves her therapist, she takes PT very seriously and she doesn’t like change. Imagine my surprise when she turned to her therapist, who she adores, and said, “I am so sorry C. and it’s not about you, but I need to change therapy days.” Clearly, she was serious about karate.

It took me a few days to wrap my head around prioritizing a “bonus activity” over physical therapy, but then I realized that the karate experience was as vital to her development as her therapy. Many children begin to choose activities over therapy as they get older. Pre-teens and teens want to be with their peers and do what they are doing—enjoying life and having fun instead of sitting in a therapy center with their parents and therapists. At this age, if we can find a way to balance the need for some structured therapy time with fun yet challenging activities like piano (now modified guitar too!) and karate, Maya is more likely to remain more active, healthy and happier throughout her life.

Once I got passed the initial stress of adjusting her therapy schedule and switching therapists (no small thing), I have been over the moon with the results. Maya has found a new activity she loves, her upper body is becoming stronger and her range of motion has improved tremendously. She also is enjoying the structure and discipline of the class.

From dance, to piano–where she initially required three people to support her body–and now to karate, Maya has shown me repeatedly that she has the determination, patience and hidden skills to do much more than anyone imagines (and the people around her set the bar high). She even continues to surprise her biggest champion, her Mom.

CP NOW will proudly participate in this year’s national STEPtember challenge

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It’s almost September and that means that international CP STEPtember challenge is almost underway! This year all of the US funds will go toward cerebral palsy research and CP NOW, our fundraising nonprofit, will be joining in the challenge. We welcome you as members of the CP Daily Living/CP NOW community to join in and help us raise money for research. We have our own registration code being used in partnership with the Cerebral Palsy Research Network (our partner in the Research CP workshop held earlier this year) that waives the STEPtember registration fee. This code, found below, also allows us to track the funds our group raises collectively.

 

Here are more STEPtember details:

CHALLENGE YOURSELF & RAISE FUNDS FOR CEREBRAL PALSY RESEARCH

https://youtu.be/HIgDxjRwI_Y

What is it? STEPtember is 28-day challenge run in 8 countries around the world, initially created in 2010 by the world-renowned organization, Cerebral Palsy Alliance in Australia and have raised $15M+ in the last 6 years. In 2017, Cerebral Palsy Alliance Research Foundation is exclusively running Steptember nationally across the US, with all funds raised going to RESEARCH for CP.

Cerebral Palsy Alliance Research Foundation is currently focused on raising funds to target the following areas:

  1. Stem cells
  2. Reducing chronic pain
  3. Thought to speech technology
  4. Prevention of CP in premature babies
  5. Deep brain stimulation

We would like to urge you, your family, friends, neighbors and colleagues to participate this year and help raise much-needed funds for CP research conducted by the best and brightest minds in the US:

  • Steptember is a global fitness initiative that challenges participants to take 10,000 steps/rolls (or using other activities that suit you) a day for 28 days: September 4 – October 1, 2017
  • In teams of up to four (but at least three), participants track their steps daily wearing a pedometer provided by Steptember
  • Results are recorded via the interactive website (http://www.steptember.us) or on the new mobile app each day
  • Participants don’t just walk to improve their fitness – there are over 40 activities from which to choose
  • Teams are encouraged to make every step count by fundraising for cerebral palsy throughout the challenge
  • All money raised will exclusively support research to accelerate important breakthroughs for cerebral palsy

We hope you’ll join us and show your support! How To Register Guide – 2017.

Create your team and register for free today at steptember.us using our exclusive code! ResearchCP2017.

Cerebral Palsy Awareness 2017–“I am aware”

Cerebral Palsy Awareness—“I am aware”

by Michele Shusterman, CP NOW & CP Daily Living

 

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I am aware that CP is the result of an early brain injury or disturbance in brain development that occurs during pregnancy, during birth or shortly thereafter.

I am aware that CP refers to a group of movement disorders that interfere with how the individual initiates, coordinates and controls movement and balance.

I am aware that CP is a spectrum condition where people require different kinds and levels of support.

I am aware that CP is the number one cause of motor dysfunction in children.

I am aware that CP impacts more than 17 million people worldwide.

I am aware that funding for CP research has been dismal for decades.

I am aware that CP affects 1 in 323 children in the US and a large adult population that is often forgotten.

I am aware someone with CP who is unable to speak often can hear, understand and have the same intellectual capability as anyone else.

I am aware that more than 50 percent of people with CP are in chronic pain.

I am aware that parents of babies at risk for CP are scared and have little guidance about what the future holds.

I am aware that some people with CP are competitive athletes.

I am aware that adults with CP have many barriers to securing employment.

I am aware that more than 70 percent of people with CP have sleep disorders (from 2016 Australian data collection).

I am aware that people with CP wish to take part in as much of life’s activities as possible.

I am aware that there are adults with CP who are neuroscientists (i.e Dr. Kathleen Friel), neurologists (Dr. Janice Brunstrom) actors, psychologists, teachers, designers, leaders, business owners, artists, volunteers, advocates, lawyers and more.

I am aware that, in addition to motor dysfunctions, some people with CP may have conditions such as epilepsy, hydrocephalus, vision, hearing and communication disorders, and problems with eating, swallowing and digestion.

I am aware that some people with CP have mental health conditions, such as depression, as well as learning difficulties and more.

I am aware that parents of children with CP must become case managers because educational and therapeutic options are so uncoordinated.

I am aware that there is ZERO US federal money dedicated to studying CP.  ZERO.

I am aware that parents of children with CP cry privately because they feel guilt and fear and are exhausted.

I am aware that parents of kids with CP will do anything to help their child reach their greatest potential.

I am aware that adults with CP need access to doctors who understand the conditions associated with aging and CP.

I am aware that some people with CP hope for a cure and others do not.

I am aware that people with CP are prevented from participating in society because bathrooms, parking, venues and doctor’s offices are still not ADA compliant.

I am aware that we are diagnosing CP too late.

I am aware that people with CP have lots of different kinds of talents and abilities.

I am aware that some parents of children with CP just wish to hear their child say “Mom” or “Dad”, or to clearly understand what they are feeling.

I am aware that the CP community is lacking standards of intervention and care.

I am aware that parents are confused and overwhelmed having to make decisions about major surgical procedures without enough research to guide them.

I am aware that, in adults, traumatic brain injuries and strokes are treated immediately whereas, with babies, we wait years to see how they develop before starting therapy.

I am aware that 1 in 3 people with CP cannot walk.

I am aware that the CP community deserves more support, access to reliable resources and research into effective treatments that improve their participation and quality of life.

I am aware that CP NOW is making a difference by developing educational resource guides, providing community support and funding pilot studies that can be readily implemented to change lives NOW.

Visit cpnowfoundation.org to download your copy of The CP Tool Kit–From Diagnosis To Understanding.

CP Tool Kit

I am aware that CP NOW needs my support to do those things.

I am aware.  Make your donation today!  https://cprn.org/donate/ No amount is too small when we all donate together!

For more information about CP visit cpnowfoundation.org and our blog/resource website at cpdailyliving.com.

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A rough week for wheelchair access–“This is the second and last time we will be coming here!” -Maya, age 10

This week has been rough for wheelchair access. One of the resource guides CP NOW (our nonprofit-cpnowfoundation.org) is working on this year is about empowering people to advocate for access in their local communities. With lots of persistence and partnership me and another local advocate, an adult wheelchair user and ADA consultant, are opening lines of communication with business owners and code and city officials. With the cooperation of many different entities we are establishing processes to ensure basic access is provided in our community. It’s tough, and requires a lot of patience and thick skin, but it’s worth it.

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Maya and I at a local civil rights rally

For those of you who may not be familiar with what kinds of problems wheelchair users face when getting out and about each day, here are a few I can share from JUST THIS PAST WEEK (and most occurred yesterday!):

1. While visiting our new orthopedic surgeon who is affiliated with a very large hospital system, we found a parking lot that didn’t have a single handicapped space that was level or had the mandatory access aisles (striped lines). I had to lift Maya out of the car and carry her to her wheelchair at the back of our van.

2. When asked at the same doctor’s office whether we had a current weight on Maya I said “No” and asked if they had a wheelchair accessible scale. The woman said they didn’t and then laughed nervously. Maya told her it wasn’t funny. She is right.

3. Yesterday when I took Maya for her piano lesson we had to park in a private lot in order to try and safely gain access to the sidewalk because there are no designated handicapped spots or curb cuts nearby. Had I not parked in this private lot I would have had to roll her down the street against oncoming traffic, until we came upon a new curb cut on the next block. In this case I still had to push her wheelchair through grass and rocks to cut through to a small space where the city sidewalk began. She told me she was scared as she fell forward in her wheelchair because it got so bumpy.

4. The place where she has her music lesson doesn’t have a bathroom that can accommodate a wheelchair–yikes.

5. Last night we went to dinner at a new restaurant in town where the building has been remodeled and reconstructed. I mention this because new construction access issues are a hot button for me–no excuses. It was our second trip there and we knew they had access issues with parking but were willing to navigate them because Maya really wanted to eat their pizza again. This is the experience that triggered the quote in the title of the blog. When Maya had to use the bathroom (we didn’t use the bathroom the first time we were there), a manager escorted us outside and around to the back entrance of the building. She was humiliated and let him know it. She said, “This is the second and last time we will be coming here!”. The manager hung his head in shame. I was proud of her for speaking up. Me and the restaurant manager spoke privately and he told me he had already called the owner because he was so upset. Needless to say, this restaurant has been added to my list of local access projects and I am working to address variety of access issues they have.

I could provide more examples, some that are very surprising, but I am saving them for a special CP Awareness post this month about access and inclusion. As I have been saying each day on our facebook page, people with CP and other disabilities wish to have fun too. They want to be a part of society and have the same rights and privledges anyone else has. As a society we have the moral and legal (at least in the US) responsibility to ensure people with disabilities can participate in life’s activities as much as possible and have their most basic needs met. I know meeting individualized support needs is sometimes overwhelming (but sometimes it’s really easy too) and can be confusing for institutions and business owners. This is why communication, education and advocacy surrounding access and inclusion issues are vital. Most of the time, Maya and others with physical disabilities are asking for the most basic human rights–like accessing their doctor’s office, using the bathroom, being able to have school and work accommodations etc. Whenever I speak with local city officials, architects or business owners I often say, “Look, I am not asking for anything extraordinary, but for us to be able to park our vehicle, access the front door and have our daughter safely and privately use the bathroom.” “Is that so unreasonable?”. I have yet to have anyone tell me it is.  And I will remind everyone that there are multiple building codes and laws in the US that have been in place for decades that are meant to ensure access (not everyone follows them, even remotely). Believe me if every business would just have accessible parking and accessible bathrooms, we will have made a tremendous step forward in including Maya and others with physical disabilities in our society.

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Michele, CP NOW nonprofit and CP Daily Living blog

We need you! Science needs you!

Be the change in Cerebral Palsy Research! Get involved!

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Join us! CP NOW has received an award in partnership with the Cerebral Palsy Research Network (CPRN), and we want you to join an important effort to advance CP research. We are bringing together diverse perspectives and insights from the cerebral palsy (CP) community, including individuals with CP, caregivers and CP medical practitioners and therapists.

Learn more about the research process and help us brainstorm ideas about CP research to create a meaningful patient focused research agenda for improving treatment outcomes.

Together, we will be creating a new paradigm that involves you in the future direction of CP research! We hope you will share your knowledge.  Sign up for the first overview webinar today!

Mental Health and Cerebral Palsy

Did you know that 1 in 4 people with CP has a behavior/mental health condition?

I often hear privately from parents and adults with CP about their struggles with mental health. There is no shame in bringing these issues forward, and many clinicians believe mental health concerns are under-recognized and under-treated among people with CP.

In CP, people struggle with behavioral/mental health conditions for a variety of reasons. They could even be related to several sources that exacerbate each other. So when working through these issues, it’s a good idea to have your medical team do some detective work. Some sources of behavioral/emotional imbalance may include:

1. Unaddressed pain (many potential sources here!)
2. Insomnia (sometimes due to pain as well)
3. Frustration with having a disability
4. Side effects from medication–Maya actually takes an epilepsy medication that can cause an increase in aggressive behavior and/or anger
5. Chemical imbalance related to the initial brain injury
6. A tendency to get overwhelmed more quickly than most people. I have noticed and heard from Maya that her nervous system gets overloaded by things that don’t intellectually make sense to her.
7. Diet. Maya has strong behavioral reactions to certain foods. Although this may not be the case for everyone, over time we have observed positive changes in behavior by removing certain foods from Maya’s diet. I’d like to see more research in this area since there are many people talking about possible connections between the gut and brain. Until then, we are going to go with what we have seen work for Maya. It doesn’t hurt her to stay away from certain foods, and from what we have observed, it definitely has helped.

We found great relief as a family by acknowledging that we needed help finding ways for Maya to manage her emotions and find relief from them. For her we have needed to address multiple potential sources of interference in her mental health that related to pain, medication side-effects, insomnia and what I would refer to as “nervous system sensitivity”. We are still working through some of these issues. There are many resources to address these sources of behavioral/emotional conditions.

One recent surprise and source of relief came from our new dog Jenny. Jenny has a tremendous calming effect on Maya. Maya told us the other day, “Mom and Dad, I can’t believe how much Jenny helps me calm down.”

Michele, CP Daily Living and CP NOW nonprofit

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The diversity of the CP Community and the many conditions they face

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There are many people who do not understand the diversity of experiences, conditions and in some cases medical complexity that make up the CP community. I have heard people’s confusion in my own conversations with friends, family members and strangers who often think CP is a similar experience for everyone. I also have seen people in CP groups on social media trying to support one another but missing vital information to offer the right kind of insight. It is critical that in discussing CP people provide background information about what CP looks and feels like in their experience. As an example, you need to know something about an individual’s motor function, type of movement disorder and treatment goals before discussing treatments that fall under the broad category of CP.

The one commonality that people with CP share is that each person has had either an early brain injury or a one-time disturbance in brain development (EDBI) that has led to varying degrees of problems with motor function, muscle coordination and balance. But the conditions and problems individuals may face do not usually end with movement. The EDBI may have lead to other conditions that impact daily life. These conditions, and how severely they affect the individual and family, often become embedded in conversations about CP and how it is portrayed and discussed. It’s important to keep this in mind when talking about “Cerebral Palsy” and to have clarity (when appropriate) about what that means to the person speaking.

Some of the conditions that someone with CP may face include:

1. Epilepsy-Affects approximately 40 percent of individuals with CP according to the CDC, medications often have side effects exacerbating other conditions, some of which are listed below:
2. Communication difficulties including speech and hearing-Some people with CP have a lot to say but no way to communicate despite the diversity of communication devices on the market.
3. Learning difficulties-There may be a diversity of barriers to learning and it’s important that these components are identified and addressed individually. For instance, there may be medications interfering with processing, the child may be tired from sleep disturbances, epilepsy may interfere with learning and visual and hearing impairments may also cause problems. 
4. Intellectual disabilities-Some people with CP have intellectual disabilities. At the same time some people with CP may be incorrectly perceived as having an intellectual impairment or a more severe intellectual impairment because of their posture, or the difficulty they may have with speaking. 
5. Sensory integration impairments-There is so much to learn and understand here but people with CP may have difficulty organizing and acting upon the information coming through their sensory centers (i.e vision, hearing, touch, vestibular).
6. Visual processing disorders (how visual info is processed by the brain)-Visual processing disorders like cortical visual impairment (CVI) can cause significant problems with learning and can be easily missed by educators. 
7. Ocular impairments (how the eyes mechanically work)-People with CP may need glasses and may have problems coordinating eye movements. 
8. Behavioral or psychological conditions such as anxiety disorders, depression and bi-polar disorder-The mental health of people with CP is often overlooked but it’s becoming clearer to clinicians and researchers that this is an area that needs more attention. 
8. Problems with eating/swallowing-Some individuals may have difficulty coordinating and using the muscles needed to eat and swallow food which may require adjustments to the textures of the foods they eat, using a straw for liquids (Maya does this) or having a feeding tube. 
9. Bowel and bladder dysfunction-In CP the muscles throughout the body can be affected including the ones that control bowel and bladder functions. Constipation is very common and can be hard to manage. There can also be problems with bladder control or urinary tract health that also relates to the muscle control in those areas. 
10. Changes to the onset of puberty-When the infant brain has been injured or disturbed during development, this can also mean that the pituitary gland which controls puberty has been affected as well. Increasing numbers of children with disabilities are experiencing early or late onset puberty. 
11. Sleep disorders–These can be severe and exacerbate other conditions like behavioral issues and learning and also affect the rest of the family. 
12. Chronic PAIN–A big issue among people with CP, especially for adults with CP.
13. Muscle/bone problems that lead to contractures–muscles fixed in a rigid position–and scoliosis-These may require treatments and/or surgical interventions.
14. Hydrocephalus-fluid on the brain.

I share this information not to dwell on the negative aspects of what can occur when someone has had an EDBI, but to illustrate the complexity and range of the disorders that one may experience. It’s very important to me and to Maya that people don’t get so caught up in her differences that they cannot connect with her as they would any other child. For this reason, I do my best to focus on Maya’s strengths, but there are days where I struggle to support her body’s most basic functions like sleeping, going to the bathroom, or trying to keep seizures at bay. I think it’s important for people to understand these issues as well. Some families struggle and worry every day about helping their children eat, drink, sleep, breathe and remain comfortable in their bodies, and they often don’t have the energy to advocate for themselves.  Other individuals may be facing great pain and are concerned about losing function, including the ability to walk, and still others may feel their barriers to communication impact their participation and quality of life more than any other symptom or condition with which they are coping. I am committed to educating people about early brain injury and CP, and ensuring that people’s strengths are recognized while also acknowledging the diversity of concerns individuals face that need to be considered when mobilizing change for the direction of research, treatment and quality of life.

**To learn more about the work I am doing for the CP community please join me on Facebook and visit CP NOW, our fundraising organization focused on education, support and funding pilot studies. Pilot studies are the first phase of scientific research where new and innovative ideas are brought forth for initial safety and efficacy testing. The CP community is in great need of new ideas and treatments, and before researchers can go on to secure larger grants or federal dollars, they need to find money for pilot studies which often comes from private organizations like ours.

 

What is that new gait trainer Maya has been using? It’s called the Up and Free and its fantastic!

**Please note that I have not been paid nor have I bartered to discuss the Up and Free. I just think it’s an awesome piece of equipment and it’s worked so well for Maya that I wanted to share it in case it may work well for some of your children or for adults with CP who follow our blog.
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I had been eyeing the Up and Free for several years at the annual American Academy for Cerebral Palsy conference. I would try it out each year and then leave the conference  thinking that we needed to find something similar to it for Maya. I didn’t initially pursue purchasing it because we didn’t have an easy way for Maya to try it out and it was likely going to be a struggle to get it covered by our insurance plan. But, over the last few years as we tried one gait trainer after another, I saw that nothing came close to the features offered by the Up and Free. What I didn’t know was if those features would work as well in practice for Maya as they did in theory and with me trying it out.
This past Spring Maya yelled at me that she didn’t want to use her walker anymore because she felt too unstable in it. I couldn’t blame her  since we had trouble with it being very prone to tipping. I decided it was time to try the Up and Free. By this time, Mr. Razon the engineer developer of the Up and Free, knew me fairly well and we had a comfortable rapport. We paid to have the Up and Free shipped to our home on a trial basis. If there was a demo near us we would have had our regular equipment vendor make these arrangements, but it was proving too difficult to locate one and I figured we waited long enough to get started. I have learned to get to know equipment and work with it for a while before getting excited and investing money in a new purchase so I always stick to my rule of trying equipment for a few weeks before we buy it. Too often we have seen items that have initially appeared to be a great fit in the first few hours or days but turn out to be not what we thought. Our initial trial made us feel comfortable in moving forward with our purchase and after many months, it has met and even exceeded my expectations. With the help of our therapy team we have made minor adjustments along the way, but I can confidently say it is one of the best equipment purchases we have ever made.
The Up and Free addresses several issues we have faced in helping to facilitate exercise and walking for Maya. Maya is primarily a wheelchair user and a GMFCS IV (according to the gross motor scale for CP). She has lots of problems with balance and stamina so it’s not easy to find opportunities for her to exercise and practice walking–something she is very motivated to work on. Every gait trainer we have tried has either been too bulky, provided too little support or didn’t provide support in the right places for her.
 
Here are the unique features we have discovered with the Up and Free:
 
1. It has a dynamic seat (it moves up and down as she moves) attached to a piston which means that as Maya walks we can offload some of her weight which has allowed her to increase her strength and stamina over time. With her old walkers she had a very hard time making progress and petered out after about 20 minutes. 
 
2. The design allows Maya to practice squats and other strength building exercises at home. This is really helpful because most of the time we give up on exercises because of the energy it takes to get her set up to do them. 
 
3. The wide frame easily fits around Maya’s wheelchair and has worked well around our toilet so she can practice transferring into it and work on transferring in general. Transfers are something we need to work on especially as Maya gets older and she is motivated to practice with the Up and Free. She wants to be able to transfer into it and then move about the house. 
 
4. The frame–although large is much more stable than her last walker and she feels secure in it. At the same time the security doesn’t come with extra weight like we have seen with other gait trainers. It also glides smoothly along door frames which prevents her from getting stuck and allows her to self-correct without much assistance. 
5. Maya has had more exercise and strength building opportunities with this piece of equipment than any other we have tried. She loves it and for the first time in her life she has enjoyed observing her surroundings from a new vantage point. This year she was so excited to walk beyond the few houses surrounding ours and see everyone’s holiday decorations. She doesn’t care to cruise around the neighborhood in her wheelchair so this was new for her. 
 
FINALLY–I got pretty choked up a few weeks ago when Maya walked a half of a mile in her Up and Free. I really didn’t think that was possible. Even if Maya is not a full-time walker, it’s deeply fulfilling for her to meet goals she sets for herself.  With all this talk about the importance of getting kids and adults with CP moving in any way possible I am relieved to find a way to support Maya’s body so she can exercise longer, bear weight and break a sweat!! Like I said, in the past she could walk for about 20 minutes and now she can walk exponentially farther and for an hour! Although it isn’t as portable as I would like (you have to break it down and hang onto some long screws), we regularly take it to the gym and have taken it to the park a few times.
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Here is video of Maya using her Up and Free from a couple of weeks agoupandfree. You can see that I provide some support in helping her move forward. A caregiver or therapists can also provide support from behind as the individual walks.
 
Are you interested in learning more about the Up and Free?
There is a list of hospitals and therapy centers that have them where you may be able to try them out. Eli Razon, the developer of the Up and Free has been connecting me with families in different states to find out how some have gotten insurance to cover the cost. I am told that some state Medicaid programs will cover it (ours would not, but private insurance paid some), some private insurance programs are covering it, and some schools and therapy centers are purchasing them. Here is the Easy Walking website where you can learn more: http://www.easy-walking.com

Making decisions about vehicle modifications for passengers with disabilities

Please note that this blog post is for educational purposes only. The costs listed here are approximations of what different options for conversions and vehicle modifications may cost. Costs will vary depending on when you read this post, your location, the accessories chosen, the dealers you use and more. Check with your dealer for exact pricing and warranty information. I have not received any incentive or payments to highlight the products or companies included here. What I have shared is based on what products I was presented with during my search and what I found through my own research.

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It’s been over a year now since we bought our new vehicle and lift for transporting Maya’s wheelchairs. Before that purchase, I was driving a Subaru Forrester and we were lifting Maya’s small wheelchair in and out of the trunk. This was adequate at the time but it became clear that Maya needed a much bigger and heavier wheelchair, possibly with power. There was no way we could continue to lift a wheelchair that big and heavy into and out of the trunk. So, off we went trying to figure out how to upgrade.

We went through many stages of thinking through what we should do, how much money we should spend, and how to balance our immediate needs with Maya’s needs at the time and in the future. I am sure a lot of you struggle with these same issues. When deciding on equipment, furniture, or other support, we think about how long Maya may need certain kinds of support and how many thousands of dollars we are comfortable investing given the possibility that she may not need them later. For others you may already know what your child needs but cannot afford those supports without great sacrifice so you are waiting as long as possible to make those big changes.

Over the course of a year before we made our final decision, we considered all possibilities, including full conversion vans/cars, manual ramps, power ramps, external lifts, internal lifts and even valet seats (vehicle seats that turn). The decision making process was so confusing that we even delayed the purchase of Maya’s new wheelchair and its power features so we wouldn’t be forced to decide what type of vehicle to buy before we were ready. It is so important for parents, therapists and vendors to understand that when a family is deciding whether or not to purchase a power chair or to buy a very heavy wheelchair, they are simultaneously faced with the need upgrade or modify one of their family vehicles. This can create two extremely expensive and complicated decisions you have to make at the same time, while trying to manage the daily living of a child with CP.

There are many ways to solve these problems and lots of different options for you and your family. You will need to decide whether to make small adjustments to your car along the way or buy a fully converted vehicle instead, which allows your child to ride in her wheelchair without transferring.

Here are some of the major options to consider:

  1. A full conversion where your child rides in his or her wheelchair
  1. A lift for transporting the child’s chair on the outside or inside of the vehicle (lots of decisions to make within this category)
  1. Purchasing a new versus a used conversion vehicle
  1. Purchasing a larger vehicle that you can have converted. **You will need to check with a reputable mobility expert to determine the vehicle eligibility requirements for modifications.
  1. Some families choose to purchase portable manual ramps. You may wish to investigate this option too but given the negative feedback I received about how difficulty these were to maneuver from other families and our mobility consultant, we chose to bypass this option and I have not covered them here.

New conversion mini-vans often run between $42,000-55,000 and up depending on the vehicle, it’s options and the type of conversion. Smaller vehicles that have been converted like the Kia Soul, start at about $31,000 new (As I was writing this post I saw an online price of 29,995 for one with 12,700 miles).  Lifts cost an average of $1000-$4500 installed. These are all expensive investments but given that back injuries can occur when trying to lift your child or wheelchair into and out of the car and those associated costs, it is important to carefully weigh the different factors involved in your situation. Take a breath though because there are lots of used vehicles  with modifications that are for sale as well. Just be sure to do your research and evaluate the warranty information carefully both with regard to the vehicle manufacturer’s warranty, which conversion systems the car manufacturer approves and the warranty for the conversion itself.

In order to figure out whether to pursue a full or a partial vehicle modification here some things to consider:

  • If your child rides in her chair will you take her more places?

This question carried a lot of weight for me. I find myself skipping errands or short and potentially fun stops for her because I am feeling the strain of transferring. Without a doubt I thought I would take her more places if we had a fully converted vehicle because that would mean no additional transfers in and out of the car. But, after driving a converted van for a weekend I didn’t feel as strongly about it. Perhaps it was because I wasn’t used to the process but fiddling with the tie downs was discouraging to me as well. This experience led me to think that if we purchased a fully converted vehicle, I would want a docking system that was as easy to use as possible (and there are some out there like the EZ Lock). If you are already investing lots of money in vehicle modifications make sure you consider all aspects of your purchase. Something like the locking mechanism for the chair may make a big difference for you on a daily basis. 

  • If you don’t choose a full vehicle modification at the beginning, you may be able to have your vehicle modified later.

You can discuss this with your sales consultant. If you don’t know who to talk to, begin by searching for dealers on the National Mobility Equipment Dealers Association (NMEDA). The answer will depend on the type of vehicle you have, if conversions are available for it, and the mileage (perhaps other things too). It is my understanding that most companies that perform vehicle modifications have guidelines for how many miles a used vehicle can have as part of the criteria for determining if it can be modified.

  • If you get a fully converted vehicle, do you choose rear or side entry? 

The rear entry is less expensive because it requires less modification of the vehicle. Setting this aside it’s important to consider the parking situations where you live. Are you in an urban area where you will be parallel parking a lot? Is the vehicle’s bottom clearance an issue where you live? If so, there is more clearance in a rear entry converted vehicle. Some people (myself included) are concerned about side entry vehicles because of the possibility of someone parking in the striped area next to your vehicle making it impossible to get back into your vehicle unless you move it to another location. Others don’t like the idea of entering and exiting the rear of the vehicle because of the space required to deploy the ramp and because of traffic that may be coming behind the vehicle. This can be a tough decision to make.

The interior space also differs for rear and side entry vehicles. Interior considerations relate to trunk space, which type of conversion will accommodate the user’s wheelchair and height, where other passengers may want to sit and where the individual in the wheelchair is going to sit in the vehicle. I was told that side entry vehicles tend to be more popular in part because it allows an adult wheelchair user to drive the vehicle or have access to ride as a front passenger.

Also, don’t get used to the factory seats when you are looking into these modifications because, with most of these modifications, you will be forfeiting some of your factory made seats. I wasn’t so thrilled about this especially since they didn’t feel as comfortable as the regular seats to me. Just remember there are going to be significant tradeoffs with a converted vehicle and you have to get comfortable with this reality from the beginning. It’s really important to see the different options in person and ask about trying out the vehicle you are interested in for a few days. Take your time through this process!  By driving the vehicle and taking your child in and out, you will experience and understand things about the vehicle you hadn’t even realized were so important. For instance, after trying a side entry van for a weekend, I realized that the back row seats felt awkward to me because my feet did not touch the floor when I was sitting there. I realized that the floor is dropped in the side entry modification process, allowing headroom for the wheelchair user, but at the same time making the back row of seats further off the floor.

  • Is there funding for vehicle adaptations and conversions?

Yes. There are some grant programs, especially for veterans, and some allowances for vehicle modifications through state Medicaid waiver programs. In addition, some car manufacturers offer small rebates for vehicle modifications when you purchase a new vehicle. Many dealers offer vehicle financing. You will find some funding resources listed at the bottom of the blog post.

We definitely thought hard about these. They seemed like the perfect solution. But then I heard the price for what I wanted and it was half the cost of a full conversion. We still may pursue something like this later.

Keep in mind that if you are purchasing a vehicle to modify with valet style seats, you need to be sure that your selection is compatible with your vehicle and in which passenger’s seats they can be installed. As an example, our Ford Transit Connect only has the option for a front passenger valet seat which will not work for Maya at this time.

  • What if we had a lift in the back that can take away the heavy lifting of her chairs in and out of the vehicle?

There were a few options when it came to lifts but it was not nearly as overwhelming to determine which one we wanted compared to thinking through a full vehicle conversion. Lifts can be placed on the inside or outside of a vehicle and there are several options for how chairs can be loaded and secured. These options weren’t cheap but they certainly were exponentially less expensive than a vehicle conversion. If we decided to purchase a lift I wouldn’t feel bad about the money we invested.

biglifterattachment

What did we decide?

We decided against a full conversion and instead purchase a Ford Transit Connect and a Big Lifter that could accommodate Maya’s manual and power wheelchairs. It became clear to us that Maya was making enough progress in her transfers that spending less money for this combination, rather than a full conversion, would meet our needs at least for a few years.

I’ve been very happy with the decision so far. I love that the Transit Connect handles more like my small SUV than the minivans I test drove. It has lots of room and a great back up camera. The only drawback is that it doesn’t have as many options as other popular minivans on the market like the power sliding doors and trunk (maybe the newer models have them?). I don’t mind especially since the price was great and we were potentially saving for a full vehicle conversion down the road.

The Big Lifter by Bruno (about $1500.00 plus installation–depending on the options you choose and we had a $1000.00 rebate from Ford) was a great choice as well. I wanted an internal lift and storage system (not on the outside of the vehicle), a system that maximized trunk space and the option to use the lift with more than one chair. It wasn’t as easy to use as the JOEY platform lift (about $2500.00 plus installation–depending on options chosen) but I preferred having the lift installed on the side of the trunk instead of having it centered. By the way, I am highlighting Bruno lifts here only because those were the ones introduced to me in the showroom.

There are others manufacturers you may wish to consider as well including: Adapt-Solutions / BraunAbility / Harmar / Pride Mobility Products Corp. / Prime-Time Specialty Vehicles, Inc. / Vantage Mobility International, LLC (VMI)

After more than a year now I can say that both the vehicle and the lift have suited us well.  I have lots of trunk room and have been able to add her walker, gait trainer, or bike back there even with Maya’s wheelchair. We also got to keep our factory made second row of seats. When the trunk of the vehicle is open I am protected from the rain (we don’t have snow here) while I hook in the straps. The Big Lifter isn’t ideal (at all) on an incline or hill but we don’t have much of an issue where we live. There is still a lot of physical labor for me to transfer Maya in and out of our vehicle but for now we are happy with our little car van. It’s fun to drive and very practical as well.

Here are a few pictures of our Big Lifter in action:

remote

liftinair

lift-in-car

Additional resources–

Helpful articles:

Vehicle Insurance and Mobility Adapted Vehicles-an article from Disabled World

An article from Edmunds on choosing a ramp for your wheelchair van

Five questions to consider when choosing a conversion vehicle

Have Wheelchair Will Travel blog’s post on Car Modification

Car modification companies and mobility dealers :

NMEDA National Mobility Equipment Dealers Association–Dealer locator

AMS Vans

BraunAbility and their Help Me Decide Guide-manufacturer

Bruno-Car lifts, valet seats (vehicle seats that turn and may go up and down)-manufacturer

Freedom Motors USA

Mobility Works

Nor-Cal Vans-Conversions for Ford Transit Connect–Rear entry only at this time

Rollx Vans

The Mobility Resource

Vantage Mobility International-resource center

Vehicles designed specifically for wheelchair users:

MV-1-A vehicle built from the ground up with wheelchair users in mind

Kenugru–affordable electric vehicle for a single wheelchair users/driver–designed by a wheelchair user

Funding resources:

Ride Away-Alternative Funding Sources

The Mobility Resource-Van Grants for all 50 States

Disability.gov-Where Can I Find Help to Make My Vehicle Accessible?

Wheelchair accessible vehicles and manufacturer mobility programs (this is not an exhaustive list):

Honda Mobility Assistance

Toyota Mobility

GM Mobility

**Check with your dealer for information about more car manufacturer programs like these