Real Stories of a Disabled Mom: Tailoring an Inclusive - Reeve Foundation

Admission time: For Mother’s Day, I intended to dive into a New Moms Guide to an Inclusive Baby Environment. But before you say, “Shut the Front Door, Kier!” I had one of my famous Gemini self-talks and figured that would be ignoring a sizeable chunk of the parent and caregiver equation because a caregiver isn’t strictly mom or dad. While this will be shared from the perspective of an ambulatory wheelchair (scooter) using mom, I’ll tap into my background in inclusive ideas and ways to find solutions as much as I can.

My list of disabilities has grown since I became a mom initially. Cerebral Palsy is the main flavor in my crip sundae, with a scoop of Fibromyalgia, Arthritis, Arthrosis, Spinal Stenosis, Degenerative Disc Disease, and a C-Spine Injury that left me with a neck full of titanium (if it was visible, I would get it chromed), and Osteopenia. There might be more, but at this juncture, this is what I can juggle in relation to my life and my family. Some of these disabilities surfaced before and during my pregnancies and while I was finding my balance as a parent of littles.

The following advice comes from my full contact parenting experience during late fall and winter, when my mobility and functionality are generally at their lowest, but I still must show up. With my first child, I had an adorable nursery and was constantly shuttling back and forth across the house to get diapers, clothes, bath stuff, bottles, etc. I was exhausted before I even got to have breakfast. This leads to:

1. Take stock of what room you exist most comfortably in. Then drill down more specifically to what space or level in the room works best for you. For example, do you function best on the floor, on your wheels, or in my case, on a kitchen/less comfortable chair?
2. Nothing baby-related is more frustrating than trying to fasten the small buttons, snaps, and tabs on baby clothing and diapers when your hands have less than stellar dexterity, strength and/or speed. I am lucky to have decent dexterity at the pace of a sleepy snail. So, while I can/could do the snaps and buttons on my kids’ outfits, I opted for zippers or swaddles with Velcro. One of the innovations I adopted early with my second daughter was the 360 diaper and disposable changing pads; while I hadn’t further injured my neck at that point, I was trying to save spoons and get the task done in a neater, more efficient time.
3. On the topic of efficiency, if you have the capability of making sounds or speaking, doing so when you move your baby in specific ways related to how you’re interacting will prompt them to react accordingly. I had a noise for lifting and transferring my youngest and she knew when she heard it to stiffen her whole body, therefore making it easier for me to pick her up. During the diapering process, when it was easier to move around with one hand (so I could change her with the other), I would associate those moves with specific sounds so that as she grew, my daughter became an active participant in her changing process. But this can be applied to any process where you need your infant or toddler to be an active participant.
4. Use your adaptive technology, accessories, and body to your advantage. Wheelchairs, grabbers, rolling bassinets, Moses baskets, changing pads, high chairs, slings, and straps are all great tools. I maneuvered my kids around in a rolling bassinet or highchair. In my wheelchair, I also used carriers and slings. But my surprise above all things, was that the best tool I found was my right arm. The irony of this is, while I’m right-hand dominant, I’m left arm dominant, or at least I was pre-surgery last year.

I’m Kieran Bridget O’Brien Kern. Power is literally my middle name. When my husband and I became engaged, we agreed that parenthood was a two-person job. I am the primary caregiver to our children, but we all work as a team. From infancy onward, we have adapted and grown together. Every day there is a new challenge. Every new challenge is an opportunity to learn more about them and myself.