Arielle and KD Rausin in Barcelona

Arielle was injured at the age of ten, so I have to dig deep to think about how our relationship has changed. She’s eighteen now. The wheelchair has become such a part of our lives that it’s difficult to remember life before it.

Some of the last pictures I have of Arielle before the car accident were of her climbing a trail in the Smoky Mountains, roller-skating and jumping the long-jump during her third grade field day. I look at those pictures and wonder what her life would be like now without the wheelchair? Skating, horseback riding, climbing trails, zip lining would all be accessible to her as well as taxi’s in New York City, all hotel rooms, beaches, and our home. But the wheelchair has woven its way into our lives and has been a constant thread affecting all of our relationships… for the better.

Arielle being the first born and female had a lot of expectations placed on her from birth. She was going to always be at the top of her class and go to college right after high school. Maybe even an Ivy league college. She attended an elementary school that was known for their high expectations and right before the accident I accepted a full time teacher’s position at that same school. The path was set until Thanksgiving Day 2003 when I got the call that Arielle was in the hospital.

During those days in rehab we became very close. Suddenly, the child that was my oldest and most responsible needed me. My focus turned from what I saw her becoming in the future to the now – what she needed in the moment. We laughed together as we escaped rehab. one night to attend a Miami Heat game. I held her hand during her two needles a day and I encouraged her as she learned to use her transfer board.

When we returned home I did some soul searching and realized that first, Arielle was still the same happy intelligent person – she just couldn’t walk. If I changed my high expectations for her, I would hurt her. She had to learn to face the world from the seat of her wheelchair. Second, I didn’t want Arielle to feel as though she wouldn’t be whole if she couldn’t walk. The wheelchair was now part of her and I didn’t want her always hoping for a future without it. I wanted her to accept what is and live a happy life. She needed to love herself now.

Our adventures began because I wanted to teach her to get out into the world and be herself. We traveled to different states and different countries. We visited college campuses. We spent days together in Philadelphia while she saw doctors at the Shriner’s Hospital.

Arielle with her FHSAA Track Medal

When Arielle decided to join her high school track team and race with a racing wheelchair I faced my biggest obstacle from within. Perhaps the years leading up to high school and watching her have to maneuver through a world that is not completely accessible and deal with people who are not compassionate to others different from themselves gave me the courage I needed to speak up for Arielle. I could not sit back and let our school system tell my daughter that she could not participate on her high school track team because she used a wheelchair. It was uncomfortable for me to ruffle a few feathers and speak out. My nature is to sit alone in a room typing away while listening to the birds chirp outside my window. It was infuriating to hear what a few people had to say about allowing a racing wheelchair into their track program. Arguing with the Florida High School Athletic Association (FHSAA) or school district personal was not enjoyable, but it was necessary for Arielle and other students in Florida using wheelchairs.

Eventually, people came together and the change was made. Arielle and I will never forget the day the FHSAA accepted adaptive track into their program. We cried. She could be on her team and wear the schools colors with everyone else.

This is Arielle’s third and final year as a member of her track team. Although she’s had to race alone against her own time for the races we look forward to the day when there are several racing wheelchairs competing against one another on Florida high school tracks. Arielle has opened the door for student wheelchair users all across Florida.

Our travels, the track program, and all of the obstacles outer and inner that we’ve had to face because of the wheelchair have made us better people and brought us closer together. Arielle will graduate high school in three weeks summa cum laude and attend the University of Illinois. That little girl who had all the expectations placed on her at birth has far exceeded anything I ever imagined. Saying good-bye to her will break my heart – half of it will stay in Illinois while the other half returns to Florida. I will return to Florida knowing Arielle is ready for whatever life sends her way because she’s already faced a mountain and rolled over it.

KD Rausin

For more interesting stories about our life please join our Facebook page: KD Rausin’s Parenting with a dash of inspiration or visit my blog.

And for students… my fantasy novel, MYSTIC, will be out November 2012.

At The Mobility Project, we have some secrets we no longer want to keep to ourselves.

You see, as the publisher of Mobility Management, a trade magazine geared to the providers and clinicians who serve people with mobility-related conditions, we know a lot about assistive technology: how it works, how it helps and how it’s funded. But over the years, we’ve realized this information isn’t always available to the people who need it most.

We didn’t set out to create a Web site for people who use mobility equipment at first. Rather, the site grew organically from the stories we hear from our friends in the mobility industry every day. For every conversation we’ve had with a mobility provider or clinician, we can tell you at least one thing that provider or clinician wishes a customer knew. When you hear these stories over and over, you start to realize just how big a knowledge gap there is for people who use mobility equipment.

For example, do people who go to a mobility provider for a seating evaluation really understand why a clinician needs to take all of those measurements? Do people who have the ability to drive understand the different options for van conversions? Do people who rent apartments to live independently know their options for home accessibility improvements? Do people with mobility conditions such as cerebral palsy know there are dental clinics that make getting dental care easier, even if they use a wheelchair?

We realized someone had to tell them.

After 10 years of wondering what to do with these stories, we finally set to work building a home.

Our site is about giving people hope, knowledge and empowerment. And when we start to think of that in the context of an enabled life, a multitude of topics arise. On The Mobility Project, you will find stories that touch on healthcare legislation, clinical research, nutrition, aging, and sports and recreation. We realize that a lot of veterans require mobility devices, so we created a special Veterans Portal. We also offer coverage of industry events, such as The Abilities Expo, product comparison charts on everything from ramps to cushions, and crossword puzzles built with industry terminology.

In addition, we are establishing a community through Facebook and Twitter, in which people with mobility-related conditions, such as spinal cord injury, can talk to each other, to us and to the industry.

Our hope is that one day consumers of assistive technology will be just as knowledgeable as the people who serve them. We hope to be the bridge that gets them there.

Find out more at TheMobilityProject.com.

And get the answers to the questions above by reading “The Secret Life of Mobility Providers”

When President Barack Obama was elected in 2008 he pledged to extend open hands of friendship and dialogue to all people of the world. From this pledge grew the Open Hands Initiative, a nonprofit organization founded in 2009 by American businessman and philanthropist, Jay T. Snyder.

The Open Hands Initiative’s mission is to support people-to-people diplomacy by creating cross-cultural dialogue and building global friendships through exchanges between American and international youth. By focusing on our similarities and areas of commonality, they can create platforms for exchange that emphasize our mutual values rather than our differences.

One of their primary programs is aimed at promoting the rights of persons with disabilities. Out of this goal came the idea and execution of an exchange project between American and Syrian disabled youth. This “Youth Ability Summit” held in Damascus in 2010, became a platform for the youth to share their stories, cultures, and ideas on how to promote the rights of disabled persons around the world. During the Summit, the youths worked closely with disability experts and Liquid Comics to create the first ever cross-cultural, disabled superhero called the “Silver Scorpion.”

The “Silver Scorpion,” is the brainchild of the youths who collaborated during the Summit, and it tells the story of a Muslim boy named Bashir who loses his legs in a landmine accident and later gains the powerful ability to bend metal with his mind. This comic is an innovative approach to people-to-people diplomacy, turning a group of extraordinary young people with disabilities into unlikely diplomats. It encourages understanding, dialogue, and tolerance not just for persons with disabilities, but also for people from different cultures around the world.

Since the Youth Ability Summit and the publication of the “Silver Scorpion,” the Open Hands Initiative has been distributing the comic book across the United States and the Muslim world. It has reached the hands of more than 30,000 Americans, 12,000 Egyptians, and soon several thousand Lebanese and Syrian youth, teachers, and disability experts as well. Moreover, the Open Hands Initiative is partnering with Liquid Comic and MTV Voices to launch an animated web series based off of the Silver Scorpion story that is available online in three languages across the world.

The Youth Ability Summit also hosted a three-day writing workshop which produced the first cross-cultural guidebook for implementing the UN Convention on Rights of Persons with Disabilities. This manual was authored jointly by disability experts from Syria and America. The manual entitled “Ensuring Rights in Development,” can be found on the Open Hands Initiative Website, along with a digital version of the “Silver Scorpion.”

For more information about the Open Hands Initiative please visit www.openhandsinitiative.org.

Ben Mattlin

When I was small–in the 1960s and 70s–most kids with disabilities either didn’t go to school or were warehoused in separate (read: segregated) institutions.  My parents didn’t want either of those options for me.

I was born with a form of spinal muscular atrophy, a genetic neuromuscular weakness.  I never walked or stood.  But other than knowing intellectually that I was “handicapped,” as we used to say, I always considered myself Normal.  After all, having a disability was normal for me.  It’s all I ever knew.

Still, the schools didn’t feel that way.  My parents had to fight to get me into a regular school.  Discrimination against disabled folks was legal in those days.

By insisting that I be integrated in regular schools, my parents ensured not only my education but my socialization.  It wasn’t always easy, but for the most part other kids were friendly.  My teachers helped; in first grade, my teacher actually gathered the class in a circle and invited the other kids to touch my wheelchair so it wouldn’t be scary.  I didn’t mind.

There were a few kids who were problems.  Threats were lodged, but no physical harm came to me (at least not intentionally).  In those difficult situations, I learned to be a “tough guy” like my heroes on TV.  I would never act scared.  And in at least one case, I took advantage by falsely accusing another child of doing something naughty that I had done.  When he protested, I simply lied, “I couldn’t have done it.”

In high school, to hang out with cool kids, I had to trust them to push my wheelchair.  The first time I actually went off campus with a friend to smoke a cigarette, I remember feeling so proud that, that evening, I actually boasted about it to my mother!

Let’s give credit where it’s due.  My social life was greatly aided by some terrific attendants.  Sometimes schedules had to be juggled, and I was never as free as I wanted to be.  But what teenager is?

With the aid of my aides, I went on a few dates with girls.  But nothing ever really developed until I was in college, living in a dorm, with a live-in attendant.  I felt I knew pretty well how to put people at ease about my disability by then.  I thought I was pretty seductive, too.

Perhaps the hardest part came later.  Once I was in a relationship, I struggled to protect my girlfriend from being burdened by my disability.  I insisted so hard, in fact, that she got a little miffed.  She wanted to do things for me.  Plus, once we moved in together, having a paid attendant around all the time became an unbearable invasion of privacy.

To this day–after 23 years of marriage–my wife and I struggle to find the right attendant mix.  Sometimes I hire extra help, other times less.  But through this struggle, we’ve become closer than many other couples we know.  We share all our secrets.

And to our kids, we’re just mom and dad.  We may not be the typical mom and dad, but these days, who’s to say what’s typical?

—

Guest blogger Ben Mattlin is the author of “Miracle Boy Grows Up,” available for pre-order from Amazon and Barnes and Noble.

On June 17, 2000 Dana Guest’s life was forever changed when she was involved in a car accident and sustained a traumatic spinal cord injury. The then 17-year-old was rendered a quadriplegic and the challenges of life after a catastrophic injury became her reality.

Soon after the injury, Guest and her family realized how difficult it was to have all of their questions answered. Medical providers didn’t want to give false hope, case workers were overloaded and government resources were scarce.

“Sadly, we aren’t the only ones who have been through this. Throughout this eleven year journey, I have met many families who face the same issues,” said Guest.

So many, in fact, her mother suggested that someone should create a handbook for those who have survived a catastrophic injury.  This simple suggestion stayed with Guest as she went on to graduate college, build an accessible home and give birth to a daughter. Eventually realizing there was a need still not being fulfilled, Guest formed what is now known as the Injury Cooperative in 2010.

Located in Central Florida, the Injury Cooperative is dedicated to providing education, support and hope to injury survivors and their families. The Injury Co-Op’s website is a rich source of relevant information about traumatic spinal cord injuries, brain injuries, amputations, and major burns. It is regularly updated with blogs, educational videos, links to useful resources and the latest news. The website also has helpful information concerning government assistance programs, private foundation aid and legal options.

Along with this new web resource, the Injury Cooperative operates the Co-Op Cares Program. This program distributes Care Bags families of those who have sustained a traumatic injury in Central Florida. All of the Care Bags have a warm fleece blanket for those cold hospital waiting rooms, a Recovery Handbook to help families organize their lives to better facilitate the recovery process and other small, useful items. The Co-Op Cares program can also help families in Central Florida locate resources, set up a social support network, and provide mentorship.

“I created the Injury Co-op with a vision of keeping fellow survivors and their families from going through what I had to experience,” said Guest. “Most importantly, I want them to know they aren’t alone and someone is willing to truly listen and help.” And, Guest works relentlessly to make her vision a reality. For more information about the Injury Cooperative, please visit www.theinjuryco-op.com or call 855-INJ-COOP.

Dana Brown Ritter and Mike Ritter

Two years ago, I married the man with the prettiest blue eyes I could find. He’s smart. He’s funny. He’s sweet. He’s handsome. And he gets me.

He does all of this, from a wheelchair. When Michael was 17 years old he broke his neck in a gymnastics accident. He’s a C5/6 quadriplegic, paralyzed from the chest down, with limited use of his arms and hands.

I am not sure just how much my perspective as a wife of a man with a spinal cord injury varies from the wife of any other man, because this is all I have ever known, but here goes.

There is certainly a lot to get used to. Not everyone will agree with this assessment, but to me, as we were settling into that first year of marriage, it sort of felt like we had a third person along for the ride.

That third person being my husband’s disability: the special needs it has, the equipment it requires, and the patience and effort required on my part to accommodate it. The catch was, unlike an actual person, the disability doesn’t communicate. You can’t reason with it. You can’t compromise. You can’t take turns. You just have to move out of the way when it is going a certain way. When it slows you down, you just have to slow down. When it goes haywire and changes your plans because of a bodily or equipment malfunction, you have to go with its flow. It doesn’t care if you are sick, or tired, or need a break. It must be handled first thing in the morning, last thing at night, and whenever it wants. It often cannot be “prioritized” or manipulated.

This was a major adjustment, especially for a control freak like myself. Because with other situations in life, you can plan ahead, you can work harder, think faster, be smarter, and get your way.

Being the wife of someone with a spinal cord injury can provide you with great perspective. Nothing like waking up every day next to someone who can’t move to make you realize whatever you are dreading or are afraid of that particular day, doesn’t really matter. But, if you’re not careful, that “perspective” can make you feel like you don’t matter.

I learned, not so quickly, but eventually, to not take the third person “personally.” It took time. And lots of love from a husband who was not willing to let his disability swallow his wife.

It is so cliché’, but communication really is key. Communication is key in any marriage, but in a marriage where a lot of the physical activity falls on one partner, because of a disability, communication is the glue that holds you together.

Just as it is important for the able bodied, ”caregiving” spouse to make sure all of the needs of the disabled partner are met, it is important for the disabled spouse to make sure the caregiver is taken care of.

There is so much support you can give, even if you have a spinal cord injury. My husband has found dozens of creative solutions to contribute. His legs may not work, but his ears do. He is an excellent listener.

There have been times when I have felt third in line in this marriage, behind him and his disability. Because he was able to see me, and hear my perspective, he was able to change it. To make me realize that we are a TEAM. There’s nothing either of us did to deserve this. It’s not anyone’s fault. But neither one of us is in this alone. We are on the same team.

Being part of a team is empowering. When you are weak, the other is strong. Two heads are better than one. Another cliché, but all of that is true. And when you’re dealing with a hard-headed non-compromising wildcard of a third person, you need as much power on your team as you can get.

My husband and I write a candid blog about our life called “Love Like This Life.” We write about life, love, faith, work and disability. We put ourselves out there in the hope that we will connect with others and encourage them along the way. Come rock this out right along side us!

www.lovelikethislife.com

Snow, sleet, ice and cold slow everyone down, but people with spinal cord injuries know they have to be extra careful to avoid the pitfalls of winter. We asked our forum users to help us compile this list of 10 top SCI winter safety tips.

1. Layer. Wear multiple layers of clothing under water-resistant outerwear. This includes a scarf around your neck, a winter hat, lined boots and two pairs of socks.
2.  Gloves. Wheelchair users’ hands often become desensitized overtime. Keep your hands warm, dry and salt-free with waterproof gloves, and remember to pack an extra pair.
3. Protect your skin. It’s important to be diligent about checking areas of exposed skin and knowing the signs of frost bite. Frostbitten skin is cold to the touch, may feel numb and appear grayish-yellow. If you think you have it, move to a warm area and seek medical attention.
4. Stay Hydrated. The human body uses more water in winter than in the summer because it takes more energy to keep warm. Avoid soda, coffee and non-herbal tea because caffeine is dehydrating. Drink water.
5. Try to do range-of-motion exercises daily. Colder temperatures cause muscles to tighten up, and stretching not only helps reduce spasms, but also gets blood flowing to keep lower limbs warm.
6. Stay warm inside. If you use a portable electric heater, make sure to keep an eye on it and to keep your distance from it.
7. Avoid snow. Both manual and power wheelchairs tend to get stuck in snow, so it’s important to stay in shoveled areas as much as possible, especially if you are alone.
8. Invest in Snow Tires. If you can’t avoid the snow, get knobby wheelchair tires. Beach balloon tires are also great for getting though snow. You’ll probably have to change your tires when you get inside.
9. Wrap your Tires. If you don’t want to bother with snow tires, you can wrap your regular tires with sturdy nylon or plastic wires that will help wheels grab as you go through snow. You may need to remove the wires indoors.
10. You can never be too safe. Pay attention to the weather: never leave home without a cell phone and keep an emergency kit in your backpack that includes a blanket, water and cell phone charger.

To share your own tips, please visit the FacingDisability Spinal Cord Injury Forums.

The first three years after a spinal cord injury are hardest on a marriage. That’s one of the results of a recent study 15-year-study by the Department of Physical Medicine and Rehabilitation at the University of Michigan. They found that couples married at the time of an SCI were 1.3—2.5 percent more likely to get divorced than the general population during the initial three years post-injury. After that time, the divorce rate slowly lowered to the national average of about 40%. The research team interviewed 2,327 individuals with SCI who were married at the time of their injury over a period of 15 years.

Participants of the 15-year-study were made up of men and women with spinal cord injuries, married at the time of their injury, and at least 18 years old. They were interviewed one year post-injury, and then at five year intervals, for 15 years.  Contrary to expectations, the level of injury, function, mobility and independence did not prove to be predictors of divorce. Instead, age at injury, being Caucasian vs. African-America, having a college degree vs. high school education, having some form of employment vs. being unemployed and being in good health and involved in social life were the significant factors in preventing or delaying divorce after an SCI.

Meaningful social opportunities are especially important in predicting marriage longevity post-spinal cord injury. The researchers stated that the more time an individual with an SCI spends out of the home with friends and family, the more outlets and resources that person has separate from their non-injured spouse, the less likely they are to get divorced.  The researchers suggest that outside social activities greatly lessen the burdens that come with caregiving, which in turn, promote positive communication between married couples. Social support can also benefit individuals physically and psychologically, as it lowers the emotional distress and isolation that can follow a spinal cord injury.

Here’s what Athena, who was married to her husband when he became quadriplegic at age 31 in 1996, had to say about their relationship.

Follow this link to hear more from FacingDisabiltiy Spouses.

How has a spinal cord injury affected your marriage? Leave a commitment below or connect on the FacingDisability Forums.

We are excited to share a guest blog post, written by a member of the Well Spouse™ Association spinal cord injury community.  Like FacingDisability.com, the Well Spouse Association is a peer support network created to connect the spouses and partners of chronically ill or disabled individuals.  In this article, the author shares her story on the strength she found from connecting with other spouses facing life after a spinal cord injury, and how they helped her find her “new normal.”

I have five biological sisters whom I dearly love, but when I need empathy and understanding about my challenges as the wife of a C-4 complete quadriplegic, they don’t always “get it.” That’s when I turn to my “other sisters” – women I have met through the Well Spouse Association who are also married to quadriplegics with a traumatic Spinal Cord Injury.

We SCI Sisters are spread from California to New Jersey, from Minnesota to Georgia.  Some of us have been caregivers for thirty-plus years, some for only three. Our husbands were injured in falls, diving and automobile accidents, playing football, and from gunshot wounds.  Some of us had young children or were pregnant on the day our lives changed forever.  Some of us later chose to adopt, or use the assistance of fertility specialists to have children post-injury.

When one of us shares her harrowing account of the first weeks in the intensive care unit, the rest of us remember our own versions. When one of us reminisces about the unforgettable compassion of the rehab professionals who guided her and her spouse to their new normal, the rest of us recall the special gestures of kindness and confidence with which we were blessed.

We compare wheelchair and seat cushion features, and discuss symptoms of autonomic dysreflexia and techniques to prevent bladder infections.  We check up on one another’s kids and debate how much teenagers should be involved in their fathers’ personal care.  We recommend accessible vacation venues to one another.  We share what’s worked for us in terms of finding and keeping reliable home health aides. We validate one another’s feelings, encourage one another to take time for ourselves, and help one another cope in countless ways.  We have our own war stories – occurrences which were stressful at the time, but have now become amusing anecdotes—such as when my two-year-old locked himself in the bedroom with his father and started playing with the controls on the adjustable bed as my husband lay there, or when the clamp on my husband’s leg bag came undone and he flooded the floor under the table at a Cub Scout banquet.

Some of us have never met face to face, and probably never will.  Others of us have shared visits with each other’s families, so useful in helping young children realize that there are other families out there that are just like their own.

When one of us is having an especially difficult time dealing with a husband battling pneumonia or a non-healing pressure sore, we can get frustrated by the miles that separate us.  We don’t often get to actually deliver a comforting hug or keep each other company in a hospital room.  But we are just an email or a phone call away from one another, and just knowing that such support is always there is immensely comforting.  Because of Well Spouse and our SCI sisterhood, we are not alone.

To learn more about the Well Spouse™ Association, go to www.wellspouse.org to find information on the many peer support services they offer.