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Spinal Cord Injury Paralysis Resource Center

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'We Don't Sleep Much': The All-Encompassing Reality of Caregiving for Children with Paralysis

By Nate Herpich

Johnson Family

On July 1, 2011, during a family vacation to Georgia, David and Susie Johnson sat in their van with their four children, stopped at a traffic light. From seemingly out of nowhere, they were struck by a speeding pickup truck driven by a 16-year-old intoxicated driver. Their six-year-old daughter Hannah was killed, and her three-year-old brother Owen was paralyzed from the neck down. The Johnson's two other daughters, Kathryn and Brooke, suffered broken bones. David had a concussion, and Susie, pregnant at the time, fractured all of her ribs.

Now, nearly three years later, the Johnson family continues to move forward, as they have since the accident, juggling a collection of full, busy lives living under one roof in Palm Bay, Florida. David is back to work. Daughter Renee is a new addition to the family. The children, of course, are growing before their eyes: Owen, who is living with quadriplegia, now attends kindergarten classes.

It's been a long road back for the Johnsons, and its one that's far from over, a road that requires 24-7 care for Owen: doctors' appointments, physical, occupational, and speech therapy, catheterization every four hours. The Johnson home now includes rotating night nurses and a nurse accompanies Owen at school, because he can never be alone without someone that can administer needed care. The family keeps a Google calendar cross-referencing all of the family's events with Owen's appointments. The calendar is shared and available on all computers and iPads in the home.

"We don't sleep very much," says Susie. "We try and fit in as many things as we can possibly do."

Johnson Family

Adjusting to 'another family member'
For the first two months following a month long stay in the intensive care unit, entire family was engaged in in-patient rehabilitation at a hospital in Atlanta; both their own rehab, and Owen's. "We wanted to make sure we could take care of Owen, 24 hours a day, before we left the hospital," says Susie. "It took us a couple of weeks to learn how to do everything we needed to do. By the time we returned home to Florida, we were comfortable with knowing how to provide the proper care."

Still, due to the extent of Owen's paralysis, the Johnsons knew that they needed to hire a nurse to be in the home, at all times. This has been their hardest adjustment. "Having a non-family member in the home was a new thing," explains Susie. "But we went about it thinking we have a nurse because we want the help, not because we need it. By learning how to provide care for Owen, we felt empowered, not dependent. And this allowed us be super selective in choosing the person who was right for us."

The Johnsons found potential nurses through an agency, and then conducted hour-long interviews with each candidate. By talking to people, they say, they were able to determine who might work well within the dynamics of their household. Simple, yet important, things such as allergy to pets, or experience with children, came up in conversation. In the end, the long interview process has paid off. "We're lucky to have the nurse we do have, we trust her. She has become another family member," says Susie.

Pitts Family

Empowerment through education
The Johnsons say that knowledge of Owen's condition and his treatment and rehabilitation has made all the difference: They feel empowered to make decisions about his care, instead of feeling held hostage by choices made by health care professionals who don't truly know their family. It's a perspective shared by Melissa Pitts, of Nazareth, Pennsylvania, and her family, who provide all of the care for their son Alex, a 13-year-old living with paralysis.

Alex, a twin, experienced spinal cord injury at birth, and since then, the Pitts family has watched his independence blossom. Of course, the journey hasn't always been easy.

A physical therapist by profession, Melissa says that early on, she felt totally overwhelmed and in parent mode. Later, she was able to use her own "professional knowledge" to determine what kinds of questions to ask the healthcare professionals in charge of Alex's care. But she says anyone can learn to be an advocate for their child. "The key is, don't be afraid to ask questions of a doctor if something doesn't sound right," she says. "If something seems wrong, ask!"

Melissa suggests finding one professional from each of the fields that affect your child's care and designating them as a contact person. One who knows your family: one physician, one insurer, one physical therapist, one outside caregiver, one case manager, and get their direct phone numbers so you can get the information you need, fast, and you don't waste valuable time repeating your family history. Caseworkers can also help fast track and negotiate insurance issues.

If you can, in the beginning, bring a friend or family member to all appointments to take notes, so that you can concentrate on the conversation in the moment, but also be ensured that all the important information will stay with you. Eventually, you'll learn to take notes yourself.

Other tips: Bring a list of questions to doctor's appointments to ensure you don't forget to ask everything you need to know. Getting copies of test results also helps you coordinate your child's care with other physicians.

Pitts Family

Finding time for yourself
For both the Pitts and Johnson families, caregiving is way more than a full-time job, and the work is incredibly emotionally and physically draining. "I'm not very good at taking care of myself," admits Melissa. This is a reality for many caregivers of people living with paralysis.

Still, even Melissa acknowledges that you have to try. "My husband Jeff is a huge help, and we split up the duties as much as we can. Every other year, I meet up with a group of five to six girlfriends from high school, and we take a trip together. I always come back refreshed, and there's no doubt I feel better, and am better able to tackle the challenges that lie ahead when I return."

The Johnsons, for their part, make spending time together as a couple a priority.

"Our relationship as husband and wife has gotten stronger," says Susie. "We work together as a team, map out our responsibilities. Our daughter is old enough to babysit now, and we have a nurse we trust, so we make sure to have a date night at least once a month." Susie, an avid runner before the accident, has resumed running, and when she can, she includes Owen in her runs. By staying healthy physically, she says, she is better able to help care for her family.

Another way to take care of yourself is to meet with people who may be experiencing a similar life situation. Both the Johnson and Pitts families recommend finding a support group, whether it's an in-person group nearby, or online (CaringBridge® is a place to start).

"We've had some great feedback from other families, and have gotten some great ideas about Owen's care," says David, who has created his own Facebook page for the SCI community. Having a community resource can be a great help toward limiting your stress as a caregiver. "It's helpful to know there are people out there with similar challenges," he says.

'We have a happy kid'
While both families acknowledge the significant challenges they must face on a daily basis, they also say that they've built happy, productive lives for their sons, and their families on the whole. A big part of being able to do this: encouraging their sons to be happy and as independent as they possibly can.

"We have a happy kid," says David. "And we're careful about how we speak to Owen. We don't ever call him a patient, he's our son, and we make it clear that there's no time for a pity party. That's not how our house works. Our nurse knows this, and she's tough with Owen, and sets expectations for him. This is important to us."

Melissa says that she and her husband also make sure to set expectations for Alex: "From the beginning, we've worked hard to instill in Alex that he is a part of the process." This means making sure that he attempts a task, instead of them just jumping in and doing it for him.

If for some reason he can't accomplish a task, we have him be a part of figuring out an alternative way of doing so. This way, he's a part of the solution" (an example: If he can't access a desk at school, he's encouraged to figure out an alternative within his classroom and make recommendations to his teacher so that he can have an appropriate work space).

This year, for the first time, Alex takes the bus home from school on his own; the Pitts have built a completely accessible home, so he can get around, get himself a snack, do his homework, and even shower. In short, he's becoming much more independent. And while new challenges inevitably arise, the Pitts have enjoyed seeing their son grow into a young man.

"As a professional in the field, when Alex was born, I was at least able to envision his life 20 years later, even if the rest of my family had trouble doing so." says Melissa. "There's been a lot of trial and error along the way, but now, I think we've all come to a place where we can do that, and more."

A Reeve Foundation Fact Sheet on Pediatric SCI (PDF)

A Reeve Foundation Fact Sheet on Religion and People with Disabilities (PDF)

A Reeve Foundation Fact Sheet on Caregivers PCAs Respite (PDF)

A Reeve Foundation Fact Sheet on Children with Disabilities (PDF)

A Reeve Foundation Fact Sheet on Parenting with a Disability (PDF)

A Reeve Foundation Fact Sheet on Mindfullness (PDF)

A Reeve Foundation Fact Sheet on New Injury Top 10 Questions (PDF)

The American Camping AssociationAccredits camping facilities, including dozens across the U.S. that cater to kids with paralysis, to assure a safe and healthy experience. Click above to locate a camp.

CaringRoad.comCaringRoad.com is dedicated to helping family caregivers obtain information, locate services and find support so they can make informed decisions about the care of their loved ones. An online community of family caregivers.

Children With DisabilitiesOffers information about advocacy, education, employment, health, housing, recreation, technical assistance, and transportation covering a broad array of developmental, physical, and emotional disabilities.

The Council for Exceptional ChildrenDedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted.

Children's Neurobiological SolutionsChildren's Neurobiological Solutions, Inc. (CNS) is a national, non-profit organization supporting collaborative research to advance treatments and therapies for children with neurodevelopmental abnormalities, birth injuries to the nervous system, and related neurological problems. CNS offers families and health care providers information and educational resources.

Caregiver.comOffers a directory of support groups for caregivers.

The Caregiver InitiativeA project of the Johnson & Johnson Consumer Products Company to help family caregivers provide care to their loved ones and reduce their own stress. Includes information on caregiver needs, and training materials for family caregivers.

Exceptional ParentThe magazine often runs a column on dentistry for people with disabilities.

DREAMMS for KidsDevelopmental Research for the Effective Advancement of Memory and Motor Skills specializes in assistive technology for students and youth with special needs in schools, homes, and the community.

Family Caregiver AllianceCaregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.

Family Caregiving: It's Not All Up to YouNFCA and the National Alliance for Caregiving launched a public education campaign to give information and support to caregivers.

The Fathers NetworkSupports men who have children with special needs through support and mentoring programs, technical assistance, national conferences and information resources.

Internet Resources for Special ChildrenProvides information to parents, family members, caregivers, friends, educators, and medical professionals who provide for children with disabilities and other health related disorders.

Getting Benefits for KidsThis link illustrates the kinds of Social Security and Supplemental Security Income (SSI) benefits a child with a disability might be eligible for and explains how we evaluate disability claims for children.

Indian Health ServiceU.S. Dept. of Health & Human Services.

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.

KidsHealthOffers reliable health information about children from before birth through adolescence, with separate areas for kids, teens, and parents.

Kids MoveDevoted to pediatric movement disorders with up-to-date information about the recognition, assessment, treatment, and support.

National Family Caregiver Association (NFCA)The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.

National Information Center for Children and Youth with Disabilities (NICHCY)Provides information on disabilities and disability-related issues for families, educators, and other professionals; special focus is children and youth (birth to age 22).

National Resource Center for Parents with DisabilitiesA deep resource on childbirth and parenting, adaptive equipment for childcare, networking and support groups

National Alliance for CaregivingThe Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family care giving issues, work to strengthen state and local care giving coalitions, and represent the US care giving community internationally.

The Office of Special Education and Rehabilitative ServicesThe Office of Special Education and Rehabilitative Services (OSERS) is committed to improving results and outcomes for people with disabilities of all ages.

Our-KidsAn online family of parents, caregivers and others working with children with physical and/or mental disabilities.

Parenting with Disabilities OnlineProvides information, support and resources to parents with disabilities.

Parents On WheelsSite is dedicated to parents who use wheelchairs.

Parents with Disabilities OnlineProvide information and resources to parents with disabilities.

Red Cross Family Caregiving ResourcesInformation for caregivers.

Spinal Cord Injury CaregiversYahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.

The Shriners HospitalsThe Shriners have three facilities in the U.S. to provide expert, no-cost care to children under 18 with spinal cord injuries.

State Respite CoalitionsThe Chapel Hill Training-Outreach Project was established in 1969 with funding from the Federal government as part of our nation's earliest attempts to provide educational services to young children with disabilities.

Through the Looking GlassThe purpose of the National Parent-to-Parent Network at Through the Looking Glass is to connect parents, as well as those who are considering becoming parents, with others who may have shared similar experiences or faced common barriers as parents with disabilities.

Well Spouse AssociationA national, not for profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Through information and support groups, the organization address issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.