Moms raising kids with special needs show up and, yes, sometimes even rock
Ever been called a saint? Or told only special moms get special kids? Or how about when someone says, “You are amazing. I don’t know how you do it.” Do you hate those platitudes as much as I do?
Yes, we are amazing, strong, fierce, determined, creative, and all-around badasses. We are women raising children with disabilities. That makes us tired, overwhelmed, and worried, but it does not make us saints.
Some of us are taking care of children with complex medical needs and manage gastronomy tubes, seizures, and wheelchairs daily. Some of us are taking care of children with concerning learning and attention issues. Some of us are taking care of children with neurological disorders such as autism and navigating behavioral issues, alternative communication systems, or dietary restrictions.
Most of us have learned how to navigate medical and educational systems. Some have also learned about the justice system and the very broken mental-health-care systems. We’ve learned way more than we ever wanted to know about OT (occupational therapy), PT (physical therapy), and AT (adjuvant therapy)—all acronyms in the special education school system. We are card-carrying members of a club we never wanted to join.
You can say we are special, but the truth is that we show up.We get up every day and do what we have to do. We get up because we love our kids, and we want them to have a full, rich, meaningful life filled with joy and laughter.
Just like every other Solo Mom, we should feel proud of who we are and what we do. As ESME founder Marika Lindholm writes in her welcome, “Every mom, regardless of the color of her skin, where she lives, who she loves, or what’s in her bank account, deserves to feel personally and collectively empowered.”
OK, enough with the cheerleading (even though it’s all true). What’s also true is we worry more; work harder; deal with systems we never heard of; and live with more chaos, more messes, and more than a little magic. We are often “walking accommodations,” making sure everyone gets his or her needs met. We are often underappreciated and under-recognized, and too often thought of as annoying moms. We may be accused of being lawnmower parents and squeaky wheels.
I know you get it. What I also hope you get is that we (all moms of kids with disabilities) see you. We see you and your determination to get your school to implement your child’s individual education plan. We see you and your tenacity to get your insurance to cover applied behavior analysis. We see you and your creativity to get your child who uses a wheelchair into a ballet class. We see ou and your insistence to get assistive technology support for your child with learning disabilities. We see you and your patience as you wait out your overwhelmed child at the grocery store so your groceries, do in fact, make it home. We see you and your grief as you hear about yet another birthday party your child was not invited to attend. We see you and your anger when your child is teased for looking different. We see you. Hell, yeah, we rock!
The thing with becoming a mom of a child with disabilities is that we do have more going on than moms who have kids without disabilities. It doesn’t make us better, it makes us different, and just like our kids, the world doesn’t really understand. Most of us have lost friends, been excluded, and watched people we know turn away when they see us. It hurts. But we have also found new friends who get us and our kids. We go to conferences and find more of our tribe. We read stories and see how many of us there are living this unexpected life.
I have learned through my 24-year mothering journey that I am a better person because I allowed my experiences to shape me into a better version of myself. Not everyone who faces difficulties chooses to change, but most do. Most of us have discovered that we are exactly the kind of people who bring out the best in others, who truly practice kindness and show compassion daily. We are mothers who make a difference, not just for our kids but also for one another and for the world we live in. We know what it’s like to have a screaming toddler at Target or wait in line behind someone who is juggling a stroller/wheelchair. We feel for those who have a loved one in the hospital or who has to go meet with the principal yet again. We are incredibly resilient and passionate.
We are the mothers who grow up.
We are the mothers who don’t give up.
We are the mothers who show up.
Anna Stewart is ESME’s Kids with Special Needs Resource Guide and the Solo Mom of a daughter and two sons on the brink of adulthood. She’s a champion for the rights of people living with disabilities and those who love them.
Please feel free to contact us with any comments or questions.