The 'Stay-at-Home Mom' I Am for My Son With a Disability
Before my son was born, I worked a professional job. My plan was to return to this job after my maternity leave was over. When my son was diagnosed with a disorder that causes him to have multiple disabilities, I instead chose to stay home to care for him. Even though I stay home to care for my son, I do not think of myself as a “stay-at-home mom.” To me, I traded one job for another.
The truth is, I always wanted to be a stay-at-home mom. I had specific ideas of what that meant. To me, a stay-at-home mom engages her curious child in arts and crafts and encourages their creativity. To me, a stay-at-home mom takes her social child to play groups and the park and exposes them to new types of interaction. To me, a stay-at-home mom reads books to their child pointing at letters and pictures and talks to them, helping them increase their vocabulary.
I do those things differently now.
Because of my son’s disabilities, I do my best to adapt art projects for him, even if the end result is not entirely his creation. I’m picking the colors. I’m moving his hand. I still celebrate and frame his art because it makes me happy.
Because of my son’s disabilities, his hypotonia prevents him from having reliable head control or sitting independently. I don’t take him to the park. Instead, I take him for walks when the weather is nice and I hope he likes the feel of the breeze and the different smells outside. I also have a special swing for him since the ones at the park don’t provide enough support.
Because of my son’s disabilities, he doesn’t see. He is legally blind due to cortical visual impairment. I still read to him, even if he doesn’t see the pictures or my animated facial expressions. He can hear the intonation in my voice. I talk to him and label what we are doing in the hopes he understands.
To me, a stay-at-home mom makes new mommy friends and gets together discussing the latest developmental milestones met or the best place for preschool. I have made new mommy friends, but I’ve searched for other moms who are also caring for children with disabilities. Instead of talking about milestones met, we’ve bonded over sharing PT strategies and adaptive equipment. We don’t talk about the best place for preschool, but share our hopes and concerns about the special ed preschool program in town.
There is one “stay-at-home mom” thing I do that I would have done if my son were typical as well. I take him to a mommy and me music class. We don’t engage in the same way as everyone else, but we are part of the group and we have fun.
I stay home to care for my son, but I’m not the stay-at-home mom I pictures I would be. And it’s OK. I’m trying my best to be the mom my son needs me to be. And I’m fortunate to be able to stay at home with him.
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