Permission to Grieve: The Darker Backstory of Neurodiverse Parenting

I grew up in the culture of the superhero mom. Somehow from the positive benefits of the feminist movement came the belief that not only could you have it all, but that you must. To do less was a disservice to the efforts of the previous generation and a poor example to the next. Being a mom wasn’t enough. If you chose to procreate you had to also work full time at a successful meaningful career, while providing your children every possible opportunity along the way. Healthy homecooked meals, a clean house, and academic and social enrichment. Not to mention a happy, thriving marriage while still making it clear that you could do it on your own if you had to.

One of the negatives of social media is that it continues to perpetuate this myth. We see the happy highlights without any of the realities of the struggle backstory. When my husband and I got married, our joint goal was to buy a house and for my husband to earn enough money that we could get by on his income and I would stay home when we were ready to start a family. We agreed on this goal but within a year of our first child being born, I had serious doubts.

Two more kids and a handful of diagnoses later and I found myself in the world of neurodiverse parenting. (I hesitate to use the term special needs parenting because while one of my children does qualify for this designation I know it’s a deep and wide pool and we are in the shallow end).

Yet most days I felt like I was drowning.

Parenting is hard. Full stop. That doesn’t mean it isn’t worth doing or that we should compete about who has it worse. But there is a level of grief that comes with the kind of life I find myself in, one that honestly I haven’t often felt permission to delve into.

I have one or two friends with kids in similar situations with whom I’ve been able to share, but mostly I hide behind the super mom persona. Friends tell me how impressed they are and how I must be so organized and together to pull it off. But that’s far from the truth. Yes, I spent years hauling my kids to twice weekly therapy and now it’s weekly counseling. Medications, special diets, homeschooling, etc. It is definitely a lot, too much if the truth were told.

I’m the mom who cries at night because she worries that her kids will never build the resilience needed to succeed in life. I wonder how to even define success. (In joking moments, I say I just want my kids to be self-supporting and stay out of prison and hopefully be generally decent human beings).

I think every parent wants to see their children do better than they did, that’s a big part of the American dream. As a person of faith, it’s a bit more nuanced to me but it’s a struggle nonetheless.

I’m the mom who wants to make excuses for her children but mostly just tries to hide her embarrassment in public and cry it out in private. I hold my peace and lose my temper in equal measure. I say far less than I could because sometimes it’s just too hard to make others understand.

I worry about balancing medications and side effects, isolation and socialization, family and peer relationships. I spend hours reading and studying still left without clear answers because there has yet to be written a book about my specific kids.

I wonder why I was meant to be the parent to these humans when I feel like I fail far more than I succeed. Sometimes I need permission to grieve the life I thought I’d have, and the children I thought I’d raise. I need to be allowed to be the struggling mom who needs help but doesn’t know how to ask for it and to drop the supermom mask, at least for a while.

I’m far from the only one, but today I’m the one who has the words and the strength to say it. We’re sad, we’re angry, we’re afraid and many of us feel so very alone. Alone in our marriages, our families, our churches, our schools, and communities. So much of the burden we carry is unseen and yet unbearably heavy. We shouldn’t need permission but often we feel like we do because to everyone else, we’re supermoms. But inside we’re just struggling to do the best we can all the while knowing it may not be enough.