Pitiful?
I
’ve heard and read a lot of accounts lately from parents and caregivers about other adults either giving unsolicited parenting advice or making crass comments about special needs kids when they are having a difficult time in public. I’ve got to be honest – this is one of the biggest reasons I built a 'moat' around my family when we first started this journey, and it makes me downright angry when I hear a story from another parent having to put up with this on top of trying to stop an active meltdown in the frozen food aisle.
I want to share some of the stories with you. I swear I am not exaggerating:
- A father of a non-verbal, autistic three-year-old, at the grocery store, was told by a stranger to, “shut your brat up and give him the damn crackers already,” when the father was working to get his son to use the sign he knows for crackers, and the child let a near silent tear of frustration roll down his cheek.
- A mother of a toddler with Down syndrome was told loudly to, “keep her brat quiet,” when he was excited at seeing a toy he liked in a grocery store.
- A mother of an elementary school-aged child was admonished by passersby in a department store for “letting her brat get away with murder,” when her child had a meltdown – after she’d managed to get the child into a dressing room to isolate him to let him calm down.
This is just a small sampling of what I’ve heard. And it makes me wonder – what is going on out there? Forget about the audacity of complete strangers thinking they have the right to give us parenting advice; what in the world makes these people so amazingly nasty? Notice that, in every case, the child was a “brat” – which I think is a code word from these people that we are crappy parents. I’ve got to assume these are the same people who leave comments on the articles about how kids are being drugged into oblivion by incompetent doctors and lazy, uneducated parents.
After my anger at these stories subsides, it makes me realize that the general public still has no clue about invisible disorders. Despite all we do to advocate for our kids, make others aware, and get the word out, all that Autism Speaks and The Balanced Mind Foundation and NAMI and Special Olympics have done has nary made a dent in the perception of the average tired, cranky, 55-year-old woman our child has mildly inconvenienced at the grocery store. I have to say, on nights when I sit trying to finish up a blog post, it makes me wonder why we even bother, if all we’ve done over the past several decades still hasn’t penetrated.
And then I hear a story about someone who has stepped up, for no reason, other than to help another parent through one of these situations. These everyday heroes aren’t parents of special needs kids. They aren’t necessarily extraordinary in any way. Like the story about the child having a meltdown in a store dressing room. While women in other dressing rooms were clucking loudly about the “brat” in the next stall, a young sales clerk lightly rapped on the door to ask if the mother needed any help, and to let her know she could stay in there as long as they needed. The clerk wasn’t loud or showy about her display of kindness, but she spoke up enough so that the chickens passing judgment in the other stalls could hear. She didn’t have to say anything, and she could have been quiet enough so that the other customers could not hear her. But somewhere along the path of her life, she learned the truth of John Watson’s quote, “be pitiful, for everyone is fighting a hard battle.” It’s then that I realize that all we do – sharing information with each other, talking to one neighbor, one teacher, one stranger we meet an event – does make a small difference in combating stigma and ignorance. It may take another several decades for us to get the message into the mainstream, but eventually, our combined efforts will change the world.
Thank you for writing this. As the mother of a recently adopted little boy with Down Syndrome, I face these situations everywhere I go. Science advances but people just don't. It all just comes down to intolerance and prejudice. There's no other way to put it. On a different note, I completely agree with you on the content of the new HuffPost Science section. I also have mental illness within my immediate family and those articles are a disservice.
WV Mom - I wrote to the author of those Huffington Post Science pieces and offered to help her get a little less "fluffy". We'll see what she says.
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Chrisa, 44, Chicago Suburbs, eCommerce professional, Anxiety (Ativan)
Co-Mod of Adoption Group with Kathy
Moderator of Psychotic Symptoms Group
Mom to Tim, adopted at birth, 17, Schizoaffective Disorder, Bipolar Type with Catatonia
Meds: Clozaril 600mg, Buspar 10mg
In Long-Term RTC since June 2009
Also Mom to Alex, bio, 21, living in Germany for a year-long internship
Also Mom to Dianna, 16, adopted at age 4 from FC, HS Sophomore, RAD, drug exposed, severely premature
Married 21 years to Tom, 44, HS Pole Vault Coach and stay-at-home-dad
As a mother of a child with bipolar, the comments and looks offered by strangers when your perfectly normal looking 11-year old is having a meltdown like a 2-year old, drive you to social isolation. The happiest and most exciting times are often a catalyst for a meltdown. I remember sitting at the beach, trying to calm my child, when another mother gave me the most hateful look. In that instant, all my anger and frustration were displaced to her. How dare she! Did she know about the medications, doctor's visits, and how much we tried and wished for this to go away? In the end, she did not know, and probably never will. It is too exhausting to carry this anger around, but what I have noticed is how my reactions have changed. When I see a parent and child struggling in public, I know I do not have the answers, but I can offer my empathatic support. Just a comment like, "Parenting is really hard," can help to reduce some of the embarrassment felt by the parent.
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Trish
I can relate on a couple of levels. As a single mother of three children, one with BP, the days/weekends I have my children we do not venture out to stores or restaurants for fear of what may happen. I too have created a moat around my home, family and often feel isolated because when visitors do come to the house they are shocked at what happens within our home. My son freely hits, kicks me and his siblings and feels comfortable calling me unthinkable names. However, needing to run into the store for milk or something basic turned into a complete fiasco. My son with BP and his younger brother were having a brawl in the middle of the aisle. People were staring, laughing uncomfortably as I tried to gather them up off the floor and to the nearest check out stand. A few months back, we were at a large warehouse store where an older women came up to me and said you must be so proud of your boys sarcastically asking me how they learned to be such animals. I was speechless. When your child looks normal from the outside, it is hard to explain why they may not act like typical kids. I too wish more people understood that there may be underlying reasons for childrens 'poor" behavior. No child wants to act naughty in a store and most parents are able to keep their children in check, unless there is something else going on within the family. -
EthansProudMom
I have gotten to where I honestly don't care what strangers think. What I find difficult is the challenge of the fact that even people close to us can not really understand. Parents of other children in my daughter's life, my own mother-in-law = I just feel judged all the time. And being a bp mom to a bp daughter there is an undercurrent that my parenting is flawed and the whole thing is somehow my fault. My own mother, who is my best friend in the world and my biggest advocate, recently said to me when I was at my wits end "you know, S (my daughter) is the only one who can make up her mind to feel differently. No one can do that for her" I truly felt like I needed to take a hammer to my head. A mentally ill person can not make up their mind to feel differently. scream.
TM
Thank you so much for this post. As a mother to a child who has multiple public meltdowns, I can't tell you how much it means when a stranger takes a moment to "check in" without judgement or derision. I remember once when my son was around 5 and having a public meltdown in the grocery (scratching my arms until they bled and throwing cans), I was doing all I could not to break down and cry. Some kind woman stopped to ask if I was okay. I wasn't okay, but her stepping in at that moment without any crass comments or unhelpful advice made the moment a tiny bit more bearable.
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Scientist, mother, artist, writer, and social activist.
Oldest (13) - ADHD
Middl'un (10) - ADHD, ODD, OCD, recently-dx Bi-polar
Littlest (8) - No dx
http://madelienegrey.wordpress.com (yes, it's new)