Mothers Living with Spinal Cord Injury Learn to Adapt in How They Care for their Families
By Nate Herpich
In 2005, while sledding with her children, Stephanie Hastie was injured in an accident, paralyzing her from the waist down. After spending several months recovering in hospitals in the Boston area, Stephanie returned to Southington, Connecticut to find that that the home she'd lived in was a construction site, as workers tackled the necessary renovations to make their home accessible for her.
Stephanie's two daughters were still living at home (her sons were away at college at Northeastern University), and immediately Stephanie realized that things weren't getting done the way she liked them to get done. "I felt like stuff was getting through the cracks," she says.
But fairly soon after her return, Stephanie began to realize she was going to have to relinquish some of her duties, and relinquish them to her kids, the youngest of whom was still in the eighth grade.
"The main thing I would say to a mom who may be newly injured like I was back in 2005, is that your kids are way more capable than you think they are. My tenth grader basically ran our house when I first came home." That tenth grader was daughter Megan, who quickly learned to take on new responsibilities.
"I was no longer the child in the relationship who had to be taken care of, but more of a peer and friend to my mom," remembers Megan. "After my mom's accident, I was able to step up to a role where I was able to support her, and let her lean on me for once, exactly as she had taught me to do by always being there for me growing up."
To this day, Stephanie appreciates the relationship that she has with her daughters, and realizes that it was a blessing to have them at home after she was injured, because they pushed her to want to do more; to go out to their games and school events, and to work harder at rehab. "I found out a lot about myself through my children," she says, "because when the kids needed me, I had to find a way to be there for them. Even if I was having a bad day." Today, her daughters are occupational and physical therapists, and this means a lot to her, as she believes their chosen careers were influenced, in part, by her own injury. Stephanie, for her part, offers counsel to many other moms who are newly injured in her role as a Reeve Foundation peer mentor.
According to Megan, while the bad days of course do take place, Stephanie has maintained an amazing, positive outlook on life. "My mom continues to live everyday overcoming the obstacle of being in a wheelchair," she explains. "As a family, we still go hiking, camping, and to the beach. She has never let the chair stop her from things she loves. I just hope I can have half of my mom's positive outlook on life for the rest of my days."
This Mother's Day, the Hastie women will celebrate the matriarch's remarkable resolve by getting their hands dirty.
"Every Mother's Day my sister and I take my mom to the local garden shop to stock up on flowers for the year," explains Megan. "She loves flowers and our backyard never has an empty spot. Then we spend the rest of the day digging in the dirt."
'Just Do It!'
Thirteen years ago, Angela was injured in an accident, and is now living with quadriplegia. Both of her children were born after she was injured (the first was unexpected she says), but she has not shied away from any of her responsibilities as a mom. In fact, you could say she's taken on even more, homeschooling both of her kids.
"Along the way, I've basically learned that it's totally doable to be a mom while living with paralysis," she explains. "I'm not sure I would have believed that before I had kids, but now I know it to be true."
Angela's kids are ages 6 and 11, and her husband is at home full-time as her caregiver. Her mom and dad have also provided a great security net for the family. But ultimately, she has been there for kids in a way that any mom would, by "being smart about parenting" and "finding ways to adapt when need be." One example: when the kids were still small, she modified a baby carrier with clips so that she could attach them securely to her body. She shares her knowledge as a mom with other women living with paralysis, and she often talks about birth experiences.
Angela has also been very open about her injury with her children, but in an age appropriate manner.
"When my youngest was two or three she put a band aid on my leg to try and make it go away. I had to explain to her that this wouldn't work, but I was careful not to go too much into the details. I created an analogy between a television cord being disconnected, and my spinal cord injury. This helped her to understand."
Angela admits that while her disability no longer prevents her from the physical interactions required of a mother to young children, she does worry about what the future may bring—how her kids will be treated by other kids when they learn their mom is living with quadriplegia to a degree, but more, will she stay healthy enough to continue to always be there for them.
"My kids are a great reason for me to take great care of myself, but there's always the chance that something could come up."
This Mother's Day, Angela is looking forward to celebrating in the moment. Her extended family will get together, and the men will do all of the cooking and cleaning to give the women a break. "At least, they're supposed to," she says with a laugh. "That remains to be seen."
Here's hoping Angela gets a rare day off.
'Don't be afraid to try new things'
While Trudy is no longer able to work, she does play a major role in the lives of her children, six grandchildren, and now, two great grandchildren. While she misses her job in some ways, leaving her position provided Trudy with a new opportunity to connect with her family on an even more intimate level.
"I always thought I was paying attention to the kids (before my injury), but when you work full time, you only give them bits and pieces and don't even realize it," she says. "It's the same thing for the friends in your life. I worked so many hours had lost touch with so many people, friends and relatives alike."
Still, immediately, there was a void.
"I was surprised how much I had stopped doing after I went to work full time, the people you lose touch with, and then all of a sudden you have all of this time on your hands!"
That's when Trudy took on a new role: caring for her grandson Nathan, who is living with Asperger Syndrome, on the weekends. Nathan has found a captive audience for his video games in grandma, and enjoys drawing Marvel comic book characters to show her. They've developed a special relationship over the years, especially unique considering Nathan's Asperger's usually means that he expects things to be done for him. But when it becomes clear that Trudy needs a coke and a glass of ice, Nathan jumps up and gets it for her.
"You know, it's funny how the little ones seem to accept you, what you can or cannot do, without question," says Trudy. "It's the adults that have more issues. It took my husband longer to understand how hard it is for me to do things than it did my grandsons."
Today, Trudy moves forward by staying positive and as busy as she possibly can. She's taken up sewing and crocheting, which she does when she can and she says she refuses to give up. She also sends out postcards, lots of postcards (between 30 and 40 every six weeks or so) to those who may need cheering up, or encouragement. "I consider doing all of these postcards as more of a help to myself than anyone else," explains Trudy.
Trudy's daughter Kelli says that her mom's ability to adapt to all of the changes in her life is what impresses her the most:
"My mother was a very hard working, intelligent, and successful business women, but in a very short period of time her independence was taken from her. At first all the changes she went through were quite debilitating and depressing, yet she was able to pull herself out of the funk and move on.
"You don't realize how much you love and rely on your parent until something happens. I do feel, as time goes on, more responsible for my mother's well being physically and spiritually. I need her to know I understand all the things she taught me. Respect yourself and others. Show kindness to everyone. Life is short, make a lasting impression."
Available to download: Over 100 PDF fact sheets organized alphabetically on various topics from Aging with SCI to Wish Granting Agencies.
Also contains disability resources for each of the 50 United States and 31 countries (where possible the country fact sheets are in the native language of that country).
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Visit the Reeve Foundation's Paralysis Resource Center dedicated caregiving pages to learn more about resources available to caregivers.
Paralysis Resource Guide
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Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.
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.
CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.
Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.
Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.
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.
Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.
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.
Center for Research on Women with Disabilities (CROWD)Dept of Physical Medicine and Rehab Services at Baylor College of Medicine.
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.
Determined 2 HealProvides helpful information for the newly spinal cord injured.
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.
Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.
The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.
Mobile WomenArticles, resources, online forum for women with disabilities especially wheelchair users.
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).
The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.
National Resource Center for Parents with DisabilitiesA deep resource on childbirth and parenting, adaptive equipment for childcare, networking and support groups
National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.
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.
New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.
Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.
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.
Paralyzed Veterans of America, in support of The Consortium for Spinal Cord Medicine, offers authoritative clinical practice guidelines for bladder management. Consumer guides are available to download.
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.
SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.
Spinal Cord Injury CaregiversYahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.
Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.
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.
United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.
U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).
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.
This FREE 442 page book is a comprehensive information tool for individuals living with paralysis and for their caregivers. Request or download your copy now!
Check out programs in your area on our one-of-a kind online searchable Quality of Life program database. You can search by location or topic. GO