by Alex Wegman, mom of two who writes about her life and adventures as a disabled parent on Instagram.
The internet overflows with parenting advice, gear lists, and hacks for the average parent. Try googling “baby gear must-haves.” The sheer number of results could overwhelm you! Unfortunately, that’s not true if you’re physically disabled and looking for help understanding what extra challenges to expect or how to adapt gear and baby care techniques.
I have an incomplete spinal cord injury, so I use a wheelchair about 80% of the time. I also have limited strength and muscle control from my neck down. When I decided to have kids, I didn’t plan to blaze a trail, but I didn’t have a choice. Here are five things I wish I’d known before I embarked on my adventure as a disabled parent.
Prioritize mental health before and after giving birth.
We hear often about how the postpartum season can impact mental health. For disabled folks, uncertainty, loneliness, and overwhelm before and during pregnancy are huge factors. I felt deep anxiety, fear, and insecurity surrounding my abilities to birth and care for a baby. I felt this in large part because of the lifetime of cultural messages I’d absorbed about disability. That’s just something no mainstream resource ever addresses.
With the help of a fantastic, curious, perceptive doula (doulas are heroes and friends) and a supportive, non-judgmental partner, I pushed through my fears to a place of confidence. It took time, reflection, and intention. A great therapist would have been really beneficial, too, and has been since.
Gear is fun, but ultimately not designed for a disabled parent.
I love babywearing. There are so many activities, both at home and out and about, that I could never have done without a good carrier. The thing is, they aren’t designed for people like me, who sit most of the time. But I need to stand occasionally and have a restricted range of upper body motion and poor dexterity. And, and, and…
It took a ton of trial and error to figure out which styles worked for me and how I’d need to adapt them.
Cribs, car seats, bouncers, high chairs, play gyms, carriers, strollers, changing tables, bathers, the list goes on—they all need to be carefully researched, and as often as possible, tried, before you commit. Getting excited and buying a piece of gear, even if it’s just with your heart, before you have a chance to decide if it’ll work, will result in disappointment and frustration.
Pregnancy and infant care can and probably will take a drastic toll on your fitness and health.
When I got pregnant at 27, I had already watched many nondisabled friends become parents. Their experiences varied, but aside from people who had major complications, most of them had few or no lasting physical issues by the time their babies were toddlers. That was not the case for me, and I was wholly unprepared. It’s not surprising, I suppose. The typical reduced activity levels because of things like fatigue and nausea in the first trimester hit me like a brick wall. It was impossible to fully recover before I delivered. Then, because I can’t carry a baby safely when walking, I spent several months postpartum relying almost a hundred percent on my wheelchair.
Most disabled folks take longer to recover from illness and injury than nondisabled folks, so it’s important to plan for that. Establishing care with a physical therapist and/or trainer ahead of time would have given me a huge head start on recovery. To find someone well equipped to work with you, I suggest reaching out to your specialist for a referral—for example, my neurologist specializes in spinal cord injury, and she looked at her network of practitioners to recommend a good fit. Your therapist can work with you on functional movements needed for infant and childcare, and help you find ways to adapt the ones that are challenging.
Rally your troops! People want to help!
If you’re disabled, caring for an infant is extra exhausting. Everything takes longer than normal, and that means there’s even less of that already precious little time and energy to devote to taking care of ourselves. You might not always see offers for the kinds of things that would be helpful, but I’ve learned that’s usually only because people don’t know what we need! Get comfortable with asking, and with being prescriptive.
Go easy on yourself.
The way I navigate pregnancy, postpartum, and parenting looks different than average. I move more slowly, need more help, and have realistic expectations about my limitations, for my sake and for the safety and happiness of my kids. All too often I compare myself to nondisabled parents, but that only creates tension, insecurity, and feelings of inadequacy. But guess what! Different doesn’t mean inferior. When I integrate all the other things I’ve listed here, I get a rich, creative experience and my kids benefit, too!
To wrap up, here’s some really good news: You don’t have to blaze a trail! In addition to all this, the internet has given us a million ways to connect with another disabled parent. Find a Facebook group for disabled parents—but two of my favorites are Mums Like Us and The Wheelchair Mommy—or follow the #disabledparent hashtag on Instagram. Be bold, reach out, and develop relationships with people who’ve been there or are there now. There are lots of friends waiting to encourage and guide you!
Alex Wegman is a writer and full time mom of a preschooler and a toddler. She lives with her husband and kids in the Santa Cruz Mountains in Northern California. She writes about her experiences as a disabled woman and mother. You can connect and read her short essays on Instagram.