The other day, I started reading a book recommended to me by a friend. It’s about an autism mom’s journey with her son. And before I could get very far, right there in the preface, she spoke of the poor people who are “taken advantage of” by charlatans who would steal all their money offering them various unapproved therapies and “shots” and blah blah blah.
As a seasoned bio-med mom, I can’t tell you how many times I’ve heard this. Often by people I like and respect. They don’t even know they are being offensive. They don’t even know they are talking about me.
These are folks who tend work within the given system, on things that have been approved and accepted as standard practice by the scientific community.
We personally believe the scientific community is decades behind, and corrupt, so we have forged our own path. Our motto has always been if it isn’t going to hurt, and it has the potential of helping we would give it a try if we could.
What annoys me about people who “feel sorry about those of us being duped” is the superior attitude. The “I know better than you” about your path. The idea that I could be taken advantage of is condescending. I’m not new to town. I have two bachelor’s degrees, one of them in nursing. My husband is a hospital pharmacist(with a chemistry degree before that). We research the hell out of every intervention we try and we often know more than our physicians.
My child was one of the best responders to MB12 shots that our doctor (who people from all over the world brought their children to see) had ever seen. Overnight she went from screaming non-stop to screaming, oh maybe 20% of the time. That little bit right there saved our lives. We think it is cruel to work on behavior only and ignore what may be going on biologically within the child to cause behavior problems. When she felt better, she did better. The shots helped. Many interventions have helped.
Yes, we have spent a fortune on our children over the last decade. They are our priority. Some interventions have not worked, but you know what? It was worth it to try. It was worth it to hope. Many things have worked, and worked quickly to help our kids. Every practitioner had their heart in it. They weren’t hiding behind a curtain greedily rubbing their hands together, waiting to steal our money. (Well, one was but she was a straight up behaviorist with all the credentials, covered by insurance).
Every autism parent I know wonders if there wasn’t something more they could have done to help their child.
I should have worked harder with him when he was two.
I should have got her involved in social skills groups when she was ten.
I shouldn’t let him sit in front of the TV all weekend (or computer), I should make him be more social.
I should have made him use the facilitated communication device.
I should have mainstreamed him.
I shouldn’t have mainstreamed her.
Are parents who “feel sorry” for those of us using bio-med therapies for our kids perhaps suffering a version of this? Is looking at us like we’re some sort of sad sacks that have been duped a way to appease their own what ifs?
Maybe. Maybe not.
Whatever their reasons, I do wish they’d be more careful about expressing broad sweeping pity for parents like me.
We’d all do better to consider the possibility we might be wrong.
I agree with you utterly. The moment I see that sort of derision in anything, including Facebook posts, I stop reading. Sometimes, when I’m feeling particularly peckish and bold, I’ll call them on it and argue until I’m blue in the face. I just posted on my own blog about my need to gather up my energy and pursue “alternatives” for my Sophie. I think you’re on to something when you look at the motivations for people’s derision — methinks they doth protest o’er much.
xoxxo
I fricking love you.
There’s another level to this too – its the place that biomed parents get when they too scared / too stuck in a rut / to sure they’re in the right place and they turn on other biomed parents for doing something “omg risky”. We, of all people, should realize that there’s far more out there to try than any even borderline mainstream doctor understands and we should trust that every parent out there is acting *to their best* ability at that very moment to help their child. .
Dear Michelle, life got busy last week and I missed your postings. I’ve gone and read those I missed. I especially resonate with your belief that this year is a special election. I believe that Romney and the Republican Party regret the passage of most socially conscious bills in the 20th century. They want to take us back to the 19th century. And they want the right to invade a woman’s life and her bedroom. Missouri is not a swing state and quite frankly, since moving here from Minnesota three years ago, I have felt like a square peg in a round hole. A stranger in a strange land. A number of the people I’ve met–just like the one that wrote the book you’re reading–seem to feel superior to others. There seems to be one way of looking at things and its their way. Of course, they probably say the same about me! Peace.
I so wholeheartedly agree! My in-laws look at me with pity because I’ve been “sold a bridge” in their opinion with respect to food – that GMOs aren’t perfectly fine, that this whole “gluten intolerant” thing is silly and a fad, that organic food hasn’t been proven to be any better for you than ‘conventional.’ (Don’t get me started on the ‘conventional’ vernacular – isn’t growing things in their natural state without adding poisons and lab-created chemicals the ‘conventional’ way and the other way the ‘unnatural’ one?)
I often take great pleasure in reminding them that I am choosing not to let the government interfere/subsidize my food choices and that, as good Republicans/Tea Partiers, they ought to respect that….
I love your dedication to finding out additional information about any and all therapies that will help your family to live to its highest potential.