In Texas, it is not uncommon to hear the phrase “bless her heart” and to feel a pang of sympathy in response. While it may be well-intentioned, the saying is rarely used outside the context of pity or shame.
For example, a sweet elderly woman will say, “that’s such a homely baby, bless her heart” or a teacher will remark of a student, “he’s so slow, bless his heart.” It’s a phrase that kills with feigned kindness.
In the autism world, parents are often confronted with similar well-meaning axioms. They run the gamut from “God gives special kids to special people” or “God only gives you as much as you can handle” or (my personal favorite) “everything happens for a reason.” Not to look a gift horse in the mouth, but NONE of these makes me feel better.
Listen, I get that it can be very difficult for those with unaffected or neurotypical children, or no children at all, to figure out what to say when my daughter begins violently scratching me and smacking herself at a playground. I know that I bring a lot of discomfort and baggage with me wherever I go, and it’s hard to know just how to properly communicate sympathy or concern. The instinct is to try to make me feel better about my circumstances, and I both understand and appreciate the gesture. I sound sour, and truthfully I am, but only because people don’t seem to grasp the power of their words.
Because, in all honesty, these expressions only serve to make me angry and defensive. Admittedly, I live in an almost constant state of agitation and anxiety, but these sayings just set me off. And here’s why . . .
To me, autism is not a blessing; it’s a curse. My daughter isn’t special in that sense; she’s wounded. And I’m not simply facing a challenge; I’m fighting with every ounce of my being every day against numerous powerful forces — both internal and external — just trying to promote her healing. I feel like these sayings are telling me that I deserved this fate. I’ve spent countless hours trying to figure out what kind of
karmic trick I’ve played on my child, and I’ve managed to come up with all types of scenarios in which we are going through this “for a reason.” All of this only reinforces the guilt and self-hatred I already endure on a daily basis. Even after combing through my past indiscretions and bouts of unacceptable behavior, I can’t imagine why anyone — spiritual deity or otherwise — would decide it best to take these actions out on my innocent child. What exactly would be the reason for her suffering, her frustration, her inability to enjoy a “normal” childhood? Beyond that, someone please explain to me why my entire family deserves to experience poverty or the inability to enjoy a friend’s birthday party or a movie in a theater or dinner out.
I also loathe these statements because they let the other culpable parties completely off the hook by making “autism” sound like a cosmic occurrence, instead of the group of preventable disorders it actually is. Autism is not fateful, it is created by a corrupt system that first harms our children, then ignores them after the damage has been done. God didn’t choose me or my child. The CDC chose to encourage her untested vaccines, the FDA approved them, her doctor didn’t communicate the potential side effects or pay attention to possible red flags, Monsanto knowingly sprayed her food with various toxins, and the government set up a wide net of corporate protection and public misinformation. At the end of the day, I chose to trust them, but we are raised to smile and nod, believe your doctor has your best interests at heart, and don’t ever doubt your government because they are there to protect you. And when those entities fail you and your children, they throw up their hands and talk about how “rare” (or even non-existent) these reactions are, and how they can’t be held accountable for people’s personal choices.
Additionally, these children — the ones with food allergies, neurodevelopmental disorders, leaky guts, ADHD/ADD, mitochondrial dysfunction, diabetes, etc. — are no longer “special.” That would imply that these are uncommon maladies, that they are unique. But, look around you . . . These children are everywhere, in every classroom, at every playdate. In a world where everyone’s special, no one is.
~Lone Star
I’m a proud Texan and a married mother of three. My middle child, now three-years-old, was diagnosed with autism at twenty-seven months, more than a year after her initial regression. I have no shame in admitting that her recovery, in one way or another, has consumed my life. I have discovered a level of strength and determination I never knew existed within me, and this journey has taught me so many things about her as well. Through this journey, I’ve met so many committed parents who also believe that autism is preventable and treatable, and I’ve made it my personal mission to support families and educate as many people as I can about the facts.
Nice! Great blog.
Love this article. I agree in having such an intense dislike for such platitudes. I have a child w Down syndrome. Different etiology, obviously, but I still cringe inside when I hear those lines. Although I don’t see my son as ‘wounded’ or in need of ‘recovery’, he does need similar types of dietary, environmental, developmental, educational, etc support.
But he’s not some ‘special’ (read weird, different, damaged, etc) kid who was given to a ‘special’ (read patient, wealthy, gifted, etc) mom. We are just ordinary people with ordinary means and ordinary goals, wanting to be treated with ordinary respect.
Thanks for this site!! Y’all have helped me make decisions and choices.
Bless you. Bless the mother that you are fighting for your child, fighting for the truth, and speaking up and out. Bless you for not bowing down as so many others. Bowing down away from the truth and the repetition of that truth’s words and actions so that others mayn’t suffer as you, your child, and your family have/are.
I always want to know how to help a mother, child, family who has an medically injured child. I always want to reach out. I often am not sure how. I know those moments are tough. I have worked with medically injured children with many/all of the diagnoses and it breaks my heart to know the suffering is so great.
Tell me, if you choose, how can I help when I’m out and see a crisis happening? How can I help without seeming “another one of those well wishers”?
Something as simple as “can I help with anything?” can be enough. You might get a “no” nine times out of ten (we try to keep up a tough facade, after all), but that means you’re helping make that tenth mom’s day exponentially easier.
Lonestar, wow. It was as if I was reading my own words. We fought to the death to recover our son, and we have, mostly (strangers say there’s absolutely no way he has autism). But family knows better. And this past Christmas Eve, we were advised to please speak with our son about his “behavior” before coming over for dinner since some people attending didn’t appreciate unruly children (my take is we’d make the hosts look bad).
So we had a family fall-out… Took a deep breath… Ended up at P.F. Chang’s for dinner and it was the BEST Christmas Eve dinner in forever!! Our little man hung in there like a champ & we were so proud.
People don’t get it. They think we’ve got a choice in how our children behave & that sudden outbursts are due to bad parenting.
Yes!! I HATE the neurodiversity campaign, which is a lie. It’s like saying “Cancer is health! Embrace your difference! Hooray for tumors!” A better platitude would be that God (and we) can make something good out of something awful. Then at least we are acknowledging the true horror of the fact that these children are afflicted and poisoned and disabled because of someone’s greed and others’ ignorance.
Love it! We are basically fixing what we’ve broken and making the absolute best situation out of a perfect storm of crap!
God, and we, can make something good out of something awful. I LOVE it! Thanks for the perfect answer to the “platitudinals”.
Lone Star, you nailed it. Standing ovation!!!
Thank you ladies!
Dear Lone Star,
I ( A fellow Texan) have been thinking a lot here at the end of Autism “Awareness” month, much along the same line as you. Autism is not special and is certainly not a blessing. My child has suffered. Our family has suffered. My child is not special, he is injured, medically. His health has been sacrificed upon the false altar of herd immunity. A friend, who is a doctor, just recently found out his grandson has been diagnosed. After talking to me they went back through the child’s records and discovered repeat reactions to his vaccines. The mother and father are now separated due to the stress. Another family destroyed, devastated. My doctor friend is still trying to absorb learning that everything he was taught in medical school about vaccines was wrong. I am trying to help them begin the healing journey.
I had some very angry thoughts the other day. I truely feel that anyone who still believes in the false god of vaccination should bow down in respect to my child for the sacrifice he has made. He should be granted honors and recognized every where he goes for the rest of his life. I want nothing for me except to see him prosper and live a full life ( which, thank goodness for Dr.’s Volpe, Jepson and Frye, he will do!).
We don’t need “awareness” or “blessings” or to be labeled “special”, what we need is for people to wake up and realize that we are slowly committing genocide of our species.
Thank you. For your anger. Your love. Your passion. Your commitment. Your honesty. We all need that slap in the face. And it is for a reason. We all need to wake up.
Bless your heart. I will take you slapping my face any day. Whatever it takes. To. Wake. Up.