What it’s like to be the mom of a neurodivergent child

Being a parent of a neurodivergent child can be incredibly isolating. Your friends have similar motherhood journeys but you can’t relate. If you share your experience, they can’t identify and it gets uncomfortable. You don’t see much of what you go through represented in the media, and you long to find your village.

But you’re not alone. It’s estimated that more than 1 in 5 children in the United States are neurodiverse. As moms of these children, own your story—because it’s uniquely yours. Besides, what’s the alternative? The more we share, the more awareness, acceptance, kindness and community we create.

So, here’s my story, which is likely a part of your story. Wherever you are, I see you—and I’m in your corner.

• I am the mom with the only child, for fear that having another will divert my time, energy, resources and devotion from my first.

• I am the mom who sometimes wonders if my spouse or partner will one day wake up, freak out and realize it’s all too much.

• I am the mom who can be found sitting alone at the preschool/kindergarten/middle school concert/talent show/picnic.

• I am the mom who has endless patience, then loses it, is overcome with guilt and starts over—again and again.

• I am the mom who never fully shared my early motherhood journey. But not many people asked, either.

• I am the mom who may be blamed and judged for my child’s differences—from family and friends, to random people at restaurants and stores.

• I am the mom who considered tapping into my HELOC (or taking a second mortgage on the house) to build a state-of-the-art sensory room, pay for therapists, private schools and anything else that may help my child thrive.

• I am the mom who hears words like “annoying,” “not normal,” “strange” or “atypical” to describe my child and other children with diagnoses, disabilities or differences.

• I am the mom who is given extra time at doctor and dentist appointments and parent-teacher meetings.

• I am the mom who has more doctors, specialists and therapists for my child than I have had in my entire life.

• I am the mom that knows the difference between an IEP and a 504 plan.

• I am the mom who has 10+ people at my child’s IEP meeting and starts each meeting with, “What do you see as his greatest strengths?”

• I am the mom who uses words like proprioception, motor planning, sensory-seeking behavior and bilateral coordination.

• I am the mom who celebrates the inchstones, milestones and everything in between.

• I am the mom who has difficulty advocating for herself, but advocates for her child like a boss.

• I am the mom who isn’t sure how much money I need for my child’s future—and have made great strides in navigating and living in the unknown.

• I am the mom who can discern between a choice or something biochemical; that is, until my child changes and then I’m back to square one.

• I am the mom who has Caesar salad dressing in the refrigerator that probably expired two years ago.

• I am the mom who is also a daughter, sister, partner, friend, manager, co-worker, writer, neighbor, doubles tennis partner, and maker of killer nachos and Arancini balls.

• I am the mom who cheerfully says my son’s name whenever he returns from school, throws a football, plays video games and basketball with him, and gives him as many goodnight kisses as the month’s date.

• I am a mom who is hopeful and fearful for the future.

• I am the mom who wishes some things may be different for her child, but never wishes for a different child.

Author's Note

Jane Kim writes a weekly newsletter about learning to connect the dots, gaining comfortability in uncertainty, and her experiences parenting a neurodivergent child. To see a sample newsletter and subscribe: https://conta.cc/46YaeXu