Spinal cord injury survivors with children are often more concerned about how their injuries will affect their children than themselves. Your life as a parent will change, but even a catastrophic injury does not have to undermine your ability to be an effective, loving parent.
Don't let stereotypes about people with disabilities frighten you. SCI survivors can and do lead meaningful, active lives from wheelchairs. You don't have to be physically strong to be an incredible parent, and the disability rights movement has revolutionized the way we view disabilities. If anything, your spinal cord injury may open you to new perspectives that will strengthen your skills as a parent.
Focus on the Relationship
The time during which you can physically control your child is short, even for people without spinal cord injuries. Most parents can't carry a child over the age of five, and even strong adults have few options for physically controlling preteens and teenagers. Don't allow your physical disability to convince you that you have lost control, or that you can't do the important work of parenting.
Ultimately, parenting—including discipline—is about a strong relationship. Some things you can do to improve your relationship with your children include:
- Talking about the day's events, making sure to ask your children lots of questions.
- Asking your child his or her opinions on political or moral issues.
- Reading to your child; reading is the single best thing you can do for your child's intellectual development.
- Watching television or playing video games together.
- Planning a family outing or project together.
- Cooking, painting, or doing other activities you can do from your wheelchair.
If you're not married or your spouse is not an involved parent, you may need outside help for some daily tasks, particularly if you have very young children. A baby-sitter or nanny can provide help anywhere from a few hours per week to full-time. You might also benefit from the use of day care so you can get a break from the demands of parenting.
If finances are a concern, state and federal aid organizations may be able to help. Some spinal cord injury foundations also offer quality of life grants to fund expenses such as childcare.
Talk About Your Injuries
Parents want to shield their children from the challenges of adult life, so many opt not to discuss their injuries with their children. Don't make this mistake! Even very young children can see that mom or dad is different. By choosing not to talk about your injuries, you stigmatize them and turn them into something shameful. Talk openly and honestly about your injuries, and encourage your child to ask questions.
Don't shy away from discussing important issues such as disability discrimination in an age-appropriate way. A five-year-old can easily understand “Some people are mean to people just because those people are in wheelchairs, but that's unkind and unfair. We treat everyone with kindness in this family.” An adolescent needs a more nuanced discussion.
Know How to Discipline Your Child
You don't need physical control over your child to discipline him or her. Indeed, physical discipline has been proven ineffective time and again, with hundreds of studies pointing to the dangers of spanking. Positive discipline—which includes carefully monitoring your child to prevent bad behavior before it starts, setting your child up for success, and rewarding good behavior—is far more effective. If you're unsure how to discipline your child, consider recruiting the help of a parenting coach or family counselor.
Keep Your Child Safe
If your child is small enough to need constant supervision and you are unable to freely move about in your home, you must develop a plan to keep your child safe. For instance, when your spouse or support person is not around, you might lock all doors except those to the family room to ensure your child does not wander off. Diligent childproofing is important in every family, and offers substantial peace of mind to spinal cord injury survivors who are also parents.
Have an Emergency Plan
It can be painful to think about your limitations, let alone contemplate how they limit your ability to protect your child. Don't let the pain deter you. Identify any clear dangers posed by your injuries. For example, if you cannot drive or cannot answer the phone, you will have few options if your child faces a medical emergency. A medical alert bracelet, easy-access button to call 911, or even a live-in au pair can offer substantial security. Work with your child's other parent or family members to create a detailed emergency plan. Acknowledging your limitations won't worsen them, but it will prevent them from harming your child.
Join a Support Group
Sometimes simply knowing that you are not alone can work wonders for managing the perils and pitfalls of parenting with a disability. Join a local support group for disabled parents. Not interested in meeting in person? Try a message board, which offers support when you need it.
Get Psychological Support
Seeking psychological support does not mean you're crazy. It means you're a normal person facing extremely unusual and challenging circumstances. Parenting is difficult for everyone; add in a disability and you are facing a massive obstacle. A skilled therapist can help you sort through your feelings, offer you a shoulder to cry on, and offer practical assistance for managing your daily challenges.
If your injuries have caused conflict with your partner or family, family counseling can help. Even if your family is supportive, group therapy can help you identify ways to more effectively work together, manage your injuries, and cope with the challenges of life with a disability. A skilled child therapist is also an excellent resource for explaining your disability to your child.
Take a Parenting Class
Taking a parenting class is not an admission that you don't know how to parent. Indeed, it's a commitment to sharpening your skills, commiserating with other parents, and learning things you never mastered from your own parents. If you struggle with specific parenting issues, a parenting class is a great way to address those issues in a supportive environment. Better still, you don't have to rely on folk wisdom or the misguided advice of friends and family; you'll be using research-supported parenting methods that are proven to work.
Find New Ways to Bond
Particularly if you had an active, athletic life before your injury, bonding with your child can be challenging at first. Be patient with yourself and your child—and don't discount your little one's input. Your child might have great ideas for spending quality time together. After all, what matters most is that you take the time to invest in your child—not that you do it in any specific way.
Written by Zawn VillinesZawn Villines is a writer specializing in health and legal journalism. Raised by a lawyer and lobbyist who advocated for spinal cord injury survivors, she is a lifelong advocate for spinal injury victims and their loved ones. You can connect with Zawn on Google+ below.
See what Swope, Rodante Has Done for Others With Catastrophic Injuries
“What made me most excited was to be able to help my family, being able to pull the burden out of them that they’ve been struggling with. That’s what made me feel the best. Everything else to come, is to come. And we’re going to live life how we have been, just not going to have to worry about buying the supplies that I need.”
"As I got better, which I did in the future, I think I remember researching them [Swope, Rodante P.A.] myself and found that they are very good at what they do. "