This chapter will discuss common questions and concerns about parenting and spinal cord injury, highlighting adaptive equipment, resources and peer support networks to help make your transition into parenthood smoother.
What Is It?
By standard definition, a parent is a person who is (or is acting in the role of) a father or mother; a person who has a child. However, BEING a parent is so much more. Being a parent comes with many roles and responsibilities that help a child feel safe, happy, and loved. It may not always fit into the “traditional” definition of a parent — but it is just as important.
If I can’t run after my child I’m not a good parent.
You can be an excellent, loving, and actively involved parent and have an SCI.
What’s Different Now?
Although a spinal cord injury changes the way you move, it doesn’t change your ability to love, nurture, and care for a child. Children are incredibly adaptable. They will learn to move with you in new ways.
They can feel special when they get a different kind of ride to and from school in mommy or daddy’s wheelchair. They will laugh just the same when you tell silly bed-time stories. They can learn how important words are when you are unable to physically reach them to move them out of harm’s way. They will love you just as much as any able-bodied parent, there really isn’t much that is any different.
A spinal cord injury does not affect a woman’s ability to have a child!
What Can I Do About It?
What can I do to increase my confidence as a parent?
Connect with peers, know your resources and prepare yourself as best as possible for the joys and challenges parenting brings. Talking to people who have faced similar challenges as you are a great resource! They can provides tips, insightful knowledge, and first-hand accounts.
Britney has a spinal cord injury at T6, and describes becoming pregnant, and equipment and strategies she uses to assist her in parenting her two small children, including her adapted crib and change table.
Bert, a C7 tetraplegic and his wife Joy Burns share their experiences with IVF and parenting, and share their fears and how they tackled them in raising kids while living with spinal cord injury.
What Do I Need to Know?
Lots of people wonder if they can do it. The answer is, If becoming a parent or continuing to be an actively involved parent is something that is important to you, then do it. Every parent struggles with the questions of whether or not they will be good at it, or if they are capable of handling all of the changes children bring with them. Peer-networks and support systems are important to every parent regardless of age or ability. Get familiar with who is on your team as well as the resources you can access when you need them.
If you are planning to start a family with a partner, talk to them about your plans. Address topics such as health, finance, support, and future plans. (These are all the same things every parent should discuss!). If you are embarking on the journey of parenting by yourself realize that even though you may be making this decision alone—you are not! There are people who want to help, make sure you take initiative to reach out to them.
Who Can Help Me?
For specialized questions related to adaptive equipment, your rehabilitation team is a great resource, especially Occupational Therapists, Physiotherapists, and Social Workers. They can help you adapt your life and finding the services you need to support you as a parent.
Parenting classes, mommy groups, daddy groups, and prenatal classes are all great places to get information about parenting in general. SCI specific organizations, online forums, or websites for parents with physical challenges are helpful places to connect with others. See our Resources section for a full list of useful tools.
Raising a child is never a simple task. Every parent struggles at times but also has the opportunity to experience great joy. Parenting with a spinal cord injury might take a bit more planning and support but really the core responsibilities and concerns are similar for all parents.
Remember, you can be an excellent, loving, and actively involved parent and have a spinal cord injury!
Articles By and For Parents with SCI
Breastfeeding with SCI - Mary Alison Cook, National Centre for Health, Physical Activity and Disability (NCHPAD, USA)
18 Things I Wish I Knew Before I Got Pregnant - Karen Hodge, SCI BC blog.
Wheel Love - YouTube documentary about marriage and parenting with SCI
Dads & Daughters (PDF) - The Spin, Winter 2015, p18-19.
I'm a Mom with a Disability - Here's How I Run the Show in my Family - Maggie Winston, Rooted in Rights.
Oh Mommy! Stories of pregnancy and parenting by SCI BC Peers (PDF) - The Spin, Fall 2015, p14-16.
Parenting from a Wheelchair: Explaining Disability to our Kids - Teal Sherer, New Mobility.
Rethinking Fatherhood: Lessons from Canada's First Paraplegic Ironman - Mark Mann, Today's Parent.
Training Children from a Wheelchair - Alicia Reagan, blog post.
Two Wheelchairs and a Baby - Anna Sale, article & podcast.
We've Got This: Fighting to Parent - Eliza Hall, We've Got This radio show.
What Life is Like for Parents with a Disability - Lisa Bendall, Today's Parent.
Wheelchair Accessible Tips and Tricks I Learned as a First-Time Parent - Stephanie Arrache, New Mobility.
Yes, People Like Me Can Have Babies - Karen Hodge, Today's Parent.
Peer Support for Parents with SCI/Disabilities
HelpCodiHeal.com - Vancouver MommyBlogger award winning blog by Codi, a mom of 3 with SCI.
DisabledParents.net - Group has been providing information, support, and resources to parents with disabilities since 1996. The website’s primary goal is to give parents an opportunity to share ideas and learn from each other. Much of the information on this site comes straight from parents with disabilities who are living their lives and raising children.
Disabled Parenting Project - Leverages technology to create opportunities for current and prospective parents with disabilities to connect and interact, and serve as an information clearinghouse for relevant information about adaptive parenting.
Parent Empowerment Network - Free email service for parents with disabilities and spouses of individuals with disabilities.
SCI Parenting - Tip and resource website by and for parents with SCI, by Swedish organization Spinalis. Parents with SCI can read or submit tips about strategies and adaptations for parenting with SCI, including pictures and video. English & Swedish.
Wheelchair Mommy Mommy Group - Facebook group for mothers who are wheelchair users and parenting children. Discussion topics include adaptive equipment, common complications, problem-solving, and fertility questions. Find the group on Facebook and request to be added, or message Priscilla Hedlin through her website, Wheelchair Mommy, to be added.
Through the Looking Glass - Serving families with disabilities since 1982, this website is a great source of info, from a US perspective.
SCI Parenting Tips and Tricks - English language website by Spinalis, a SCI organization out of Sweden sharing creative ways peers have adapted equipment or solved common parenting needs for parents with Spinal Cord Injuries or related disabilities.
Adaptive Equipment Needs
Some of our clients have shared the following equipment with us:
- An adapted and adaptable crib (by a Tetra chapter)
- An adapted harness to assist in picking up a baby
- A Triangle Sling with loops at the ends for a tetraplegic dad to pick up a baby.
- The Pedialift crib (with height adjustability)
- (In the B.C. area) - check out SCI BC's Marketplace for adapted wheelchair and baby equipment for sale
Adaptive Baby Care Equipment: Guidelines, Prototypes & Resources (book, 2000 edition) - Kris Vensand et al. This revised and expanded edition of the 1995 Adaptive Parenting Equipment: Idea Book, presents creative solutions, including adaptive equipment and commercially available products. The cost is $30 or $15 for low-income families.
How Do I Parent from a Wheelchair? - From Wheelchair Mommy blog. This page includes useful FAQs, strategies and information on the crib, stroller, and other equipment used by a mom with SCI, from the perspective of a US resident.
Tetra Society of North America - Tetra recruits skilled volunteers – who also happen to be engineers and technicians – to create assistive devices for people with specific needs that cannot be met by commercial items. Everything created through Tetra is unique and custom made for that person's particular needs. Locations across North America.
Books for Children About Parents with SCI
Mama Zooms - Jane Cowen-Fletcher
SCI BC Peer Nicole shares how the Tetra Society helped her with an adapted crib and stroller after the birth of her first son.
Marriage and Children - videos by Facing Disability.
Parenting with a Disability video - Global News.
Mamma Pappa Lam video - Spinalis Project out of Sweden aimed at increasing knowledge about fertility, pregnancy, childbirth and parenting for people with spinal cord injuries (swedish).
IVF and Fathering with SCI - Urostat - Dad with SCI and his partner share their parenting with SCI experience.
Be sure to check out our Video Playlist for this chapter!