I’ll say this bluntly: I hate martyr mommies.
What are martyr mommies?
Good question.
Martyr mommies are the kind of people who use their children’s diagnoses and the challenges they face as a result of those diagnoses to get pity and internet clout.
Parenting is hard. None of us really know what the hell we’re doing no matter how many books we read or classes we attend. Life is random, and our children are people in their own right, not extensions of ourselves.
Can we grieve the expectations we once had based on the diagnoses our children receive? Certainly. It would be strange if we didn’t grieve when our children face unexpected challenges. We all want our kids to stand out in ways that won’t bring them pain we may not know how to help them navigate or manage. We all want our children to have easy, successful lives with minimal effort on our parts. That’s normal, too. That is absolutely, 100% normal.
But the universe is a complex place, God has a sense of humor, and once you think you’ve figured out all of the pitches in the game of life, an unexpected curveball can catch you unaware.
Sometimes it can even be a bean ball.
So you stand there, rubbing your head, wondering what the hell just happened and how you can win the game with a sore noggin. There are two choices here: you can stay put, complaining about how much your head hurts to whoever will listen, or you can go to the bullpen, get evaluated by the team doctor, and strategize with your team to figure out what to do to go forward and win the game.
I’m autistic, and so is my oldest child. We have two completely different flavors of autism. While I excel at reading and writing, I barely limp by in math, eye contact is physically painful, I can’t wear tight clothing or certain materials, and I experience intense sensory overload when I try to drive a vehicle, so I am not a particularly safe driver. Sam, on the other hand, has a gift for mathematics, enjoys leggings and other form-fitting clothes, and doesn’t seem too bothered by eye contact, and she HATES reading and writing. She stims and vocalizes more than I do, but I have had years of conditioning that make it easier for me to remain rigid and still. (Before I had children, I could literally go days without talking if I didn’t have to work, and I didn’t talk when I wasn’t working. Talking is hard for me most days.)
I’ve seen what martyr mommies have to say about their autistic children. With nonverbal children, they seem to assume that because they can’t talk, they don’t understand what’s being said.
And they would be wrong. There are quite a few nonverbal autistic writers, and some of the more famous ones have blogs and social media where they interact with others. They understood what was being said about them, and I have no doubt that nonverbal autistic people pick up on the meaning behind words, even if they don’t understand those words.
One of the biggest things I’ve had to struggle with as an adult is knowing how much of a burden I was on my family. If you ask my parents, they will deny that I was a burden, but I knew I was. I didn’t fit anywhere, I struggled to make friends, I was blunt when I did speak, and my very existence cost my parents money that could have been spent on other things. They already had three children when I came along.
They never said I was a burden, but I knew.
My siblings had to put up with my otherness, too. My youngest older sister once told me, in a moment of intense irritation with with me, that I was a mistake. The story goes that my mother was taking birth control pills and had decided that she wanted a tubal ligation, but when she went to the doctor to see about getting it scheduled, she found out she was pregnant with me. My parents didn’t believe in abortion, so I was born into my family as an unexpected “blessing.” My mom got angry at her for telling me that I was a mistake. She reframed it as a “happy accident,” and she said that none of my siblings were planned, so if I was a mistake, so were all of my siblings–and she didn’t think that any of us were mistakes.
But the feeling still lingered. And logically, I knew that my existence stretched my family’s already too-thin resources.
But I digress.
Suffice it to say that children can tell how you feel about them, even if you don’t put it into words or think you’ve hidden those words in a place where you think those children will never see or hear them.
And now we move on to the next thing: Being a good parent is hard no matter what challenges your child faces.
My oldest is autistic. Does it suck? Yeah, it does. I wanted her life to be easier than mine. I didn’t know I was autistic before she was born; it was two years after her diagnosis before I was diagnosed and so much about my life made sense.
My youngest had GERD so bad she was up practically every hour of the night, throwing up slightly less than what she kept down until she was about nine months old. Did it suck? Hell yes, it did. I was scared that if I couldn’t get her GERD managed, she would end up with a feeding tube or hospitalized. I felt like a failure as a parent. I was also severely sleep-deprived and not a very good parent or partner.
Even after the GERD got managed, she still took a long time to sleep through the night, and that didn’t happen until she was almost a year old. She sometimes wakes up in the wee hours when she’s sick, both other than that, she’s a pretty good sleeper. She’s still prone to bad gas when she has a cold, but we’re doing baby-led weaning, and she’s cheerful in spite of the rough start she had.
And these are just the challenges in my family. I am not sure if my youngest will end up being autistic, but if she is, it will be a very different flavor from me our her sister, because she’s an extremely charismatic, people-oriented child.
But that doesn’t mean there won’t be challenges. I know people who are good parents who have done the best they could have children that have been through rough challenges ranging from cancer to teen pregnancy to substance abuse.
Parenting is hard no matter what life throws at you. Nobody is disputing that. It’s the dwelling in the difficulty that makes things worse.
Sam was completely mute by the time she was two years old. She had started talking at nine months, and then it was all gone. It was that loss of speech and a few other flags that led me to taking her to the Thompson Center in Columbia to be evaluated. Once we knew she was autistic, I worked together with her healthcare team to secure the therapy and tools she needed. I also applied for SSI for her since I had lost my job and felt that I needed to be a hands-on parent to navigate these challenges. I was a single parent living with my brother, my younger older sister, and my nieces and nephew. That family support network was also helpful.
I fought for what my daughter needed, and I did not stop fighting even when she began to make progress.
And she still has a long way to go.
Has it been easy? Nope. I’m not going to elaborate, either, because I don’t need to share what we’ve been through to score internet points. My child doesn’t deserve to be humiliated so I can receive validation.
Instead, I prefer to focus on what our hard work is bringing forward. My oldest daughter’s father, my husband, my daughter’s healthcare team, my daughter’s education team, my daughter, and I all work together (though not all in the same room; that would get pretty crowded) to help my daughter have her best possible future.
I acknowledge that parenting an autistic child is challenging, but I would argue that parenting any child is a challenge. Rather than humiliating our children for sympathy or internet clout, we should focus on the things they can do and do what we can to help them master more. Not every autistic person will be the next Temple Grandin or John Elder Robison (nor should they be), but we parents should seek out and use every resource we can to help our children be all that they can be.