While catching up on reading various blogs on Autism this morning,
I came across a blog written by a mom who approaches autism from a
biomedical point of view. She was complaining about her life in biomedical
by how hard it is for her to mix the biomedical concoction I am almost sure
her child "loves" to take, her lack of finances, her poor marriage, etc.
I continued reading, because the blog was titled "United We Stand, Divided
We Fall" over at the Age Of Autism site.
When you follow the link over to the blogsite the article came from,
the title is BIG CONTRAST there, huh?
So, we mother's who are fed up with the whining and hatred over at the biomedical sites
are supposed to be united with these bio-med moms...especially after lovely comments
such as "foaming at the mouth", "neglecting our children", "sitting back and doing
Instead of being so mad at the Neurodiverse crowd, you parent's of biomedical
interventions should be mad at the doctors and "experts" that have made you
so very mad in the first place.
Promises of cures and recovery, that many of you have stated have not occurred, even
after giving thousands and thousands of dollars to these people.
After reading where one mother gave 18 IVIG infusions to one child, only to have
the child regress back into her former autistic self...shame on that doctor for continuing
the treatments...more shame to the mom who allowed it.
After reading about a mom who is pissed that Hbot did not cure her son, even after
trying every treatment imaginable (including a nicotine patch put on his butt)....and she is so disappointed in a child who she "wished had recovered by kindergarten"....he is now
8 years old. How very sad that this little boy is such a disappointment to his mother.
You should be mad at the doctors who sell you these "protocols" that are not covered
by insurance....and do you know why?
Insurance is not used on unproven, unsafe methods of treatment. I thank God there
is someone who draws the line at what will be covered and what will not be covered by
insurance. That would be my wakeup call as not what to do to my innocent child by
a person who claims to want to help them, yet will not take my insurance....duh !!!!
Lately, the biomedical community have been playing the pity card. Poor, poor me...
my child is not recovered...my child is making me so unhappy because I am broke,
divorced, have no friends, depressed, and just plain pissed off !!!
Most of the parents I have met, who practice the "ND" approach...which, by the way,
is still very hard... is a hard-working, happy, well-rounded, accepting person. They are not foaming at the mouth. They are not screaming or ranting at those who do not agree with them. We have not given up on our children. We love them. We educate
them. We make sure they go to their therapies. We make sure they are at their
prospective extracurricular activities (ie, baseball, ballet, etc). We make sure we
teach them how to behave and what is acceptable behaviors (oh, btw, that is called
We take our children to the doctors when they require medical attention, we
schedule dental appointments, neurologist appointments and appointments with
therapist...and with more than one child on the spectrum, this is sometimes quite
We prepare meals for our children to eat....just because they are not GF/CF meals,
does not mean we do not love our children any less than you guys who promote
We had a difficult day with Kiernan yesterday. He was in OCD mode...obsessing
on everything. Today, with a much calmer Kiernan (without medication, mind you),
I thank God for the patience he has given me. I also thank him for giving me a husband
who knows when I have had enough. I thank him for all of my children, who make
me who I am...
I love being a mother...it is why I am here.
It is now 4:30 pm. In between writing this blog, cooking breakfast and lunch and
now making dinner, I have put a great deal into writing this blog.
I do not dislike any parent...whether they believe that biomedical interventions are
helping their children or not.
I dislike the fact that these parents find it okay to name-call and demean us on
comment boards such as Age Of Autismjust a couple of examples from today are...
Next time a biomed parent sings that they do not name-call or bring down
parent's who do not practice the methods they do, cite some of these comments
You don’t hear biomed parents out there chastising others for not doing biomed. You do hear biomed parents telling about their experiences and recommending resources, but not calling someone derogatory names for not doing biomed.
Posted by: Twyla | August 02, 2009 at 03:07 PM
Having been at this twelve years now, I'd have to agree the divisiveness within the autism community has been one of the most frustrating aspects. For the life of me I will never understand how anyone, let alone a parent, can embrace this disease as some sort of a twisted blessing and do next to nothing in response. I've seen people buy expensive houses and cars and claim alternately that they can't afford biomed/behavioral treatment and that their child doesn't really need it. I've also seen single moms on welfare and couples teetering on the edge of bankruptcy be ferocious advocates and figure out a way to get services and treatment for their kids. I believe it all comes down to selflessness and individual character. So at the end of the day, after the anger and sometimes jealousy toward the "ingnorance is bliss" crowd, what I mostly feel is pity.
Posted by: mlinn | August 02, 2009 at 12:45 PM
Crystal, great article. And you're right-I don't think too many biomed moms go screaming around pontificating about how great they are because they're curing their kids autism, while dissing the moms who choose not to do it or can't because of the money challenges. My heart goes out to you all!!!!!
Posted by: jennifer | August 02, 2009 at 12:22 PM
Anna send me an email, there may be some hope, stay strong, I bet there are at least 50 people reading this that may be able to relate to your situation. It's a struggle for us all. We all would welcome sharing with you some of our resources, what little there are.
My email is bensmyson (at) gmail.com
Posted by: | August 02, 2009 at 12:07 PM
Crystal, your article hit hard on me. I have not accepted autism, even though my son is 28 years old, and daughter 21. I have not accepted it by telling others that what happened to them, was ioatragenic. I have not accepted it by going into grave debt to cure them (with some major improvements her or there on biomed), and
One person said, doesn't it exhaust you to be so involved in the cure, when you can just accept things as are? I told her, it exhausts me more,that people don't accept there are children being cured everday, even though it's not my children. When we finally broke down in the genetic angles, we found that they lie close to autoimmune genes. Surely, the IDSA, AAP can accept, that the immune system responds to the enviornment and their triggers?
If anyone thinks I feel less of my children, they have another thing coming. I feel more love for them then anyone will ever know. I would take a bullet for them. I would give my right arm for a cure, a magic pill, a procdure that worked. Every improvement is a miracle. The ultimate healing person is God himself, and either in this world or the next, their day will come.
Posted by: | August 02, 2009 at 11:44 AM
It's tough to embrace something that threatens a cultural environment that has existed for many generations in families where kids typically grow up, enter school, have friends, get a job, get married and raise a family. I've been told that, "Ben doesn't seem that bad, you're lucky" and I felt like saying, "Hey, if a boat leaks, no matter how big or small the leak, the boat will still sink dumbass." There is no such thing as "not that bad" when it comes to atusim. And people seem to think autism is not a deadly illness because they don't see what the parents see and hear and read. I've actually had a couple of people say that "at least autism isn't fatal." OK great, Ben won't lay in a bed at hospice and succumb to autism, super. How do they know that to be true though? Who told them that? Anyone study that?
Do they know for a fact that a 12 year old autistic boy will not drown in a pond or river because he impulsively reached out to touch a leaf floating by
Autism is indeed killing people, a woman holding her autistic child jumps off of a bridge in the UK
These stories are extremely real, and the number of stories of autistic children suffering and dying is horrendous, usually it's the caretaker that's overwhelmed reaches a breaking point and snaps. Was the caretaker married? Have any help? Support? Was she seeing any improvements, any hope? Who was counseling her? What advice was she given? We've all seen one variation or another in the news about a discovery of a child being kept in a closet, malnourished and "retarded" while other children in the house are well fed and seem to be unharmed.
The other part of this of course is the staggering numbers of children that stop looking their parents in the eyes, spin like a top, flapping their arms, throwing a violent fit in the middle of a grocery store over the change in packaging of a stupid cereal box. This is my 9/11 and my enemy is autism. It took Ben from us, and replaced him with a different child, one that looks exactly like Ben. He was taken from us by a vaccine that we were told would not cause autism, DOES NOT cause autism, will NEVER cause autism. We were given a video of Dr. Offitt from the doctors office as a way to "inform" us parents as to the safety of vaccines. Yet a doctor the other week, one that serves on the Board of the American Association of Pediatrics, an organization notorious for denying the vaccine/autism link, looked me in the eye, and said, "I cannot rule out a vaccine as being the cause Ben's autism. "
I have little tolerance for those that "encourage" us to embrace autism. Yes, my son is the joy of my life. We are extremely fortunate that he has recovered so much in such a short time, but we work at it, constantly. I want to do everything I can to rescue him, by any means, at any cost.
I read a story the other night that brought me to my knees, a woman wakes on her downstairs couch at 4AM to the screams of her 4 year old daughter at the top of the stairs, she looked and their were flames on the ceiling on the second floor. The house was filled with smoke. The mother ATTEMPTED to climb the stairs but was turned back because of the "heat", made it as close as 10 feet to her daughter. The fire seemed to be coming from her 13 month-old son's bedroom, he was also screaming. The mother turned away from them, dialed 911, went outside to pray waiting for help.
The little girl survived, the boy didn't. It was all over in about ten minutes.
I read the story to my wife and asked, "Would you even have to think about climbing those stairs?"
What we do is instinctive, to us there is no choice, we don't even think of other options, we must brave the heat, climb those stairs, blindly risk everything to save our kids.
Do I want to kick someone for waiting at the bottom of the stairs, waiting on God, "accepting" fate without a challenge? You're damn right I do, and the next one that attempts to counsel me to wait at the bottom of the stairs, to accept it, will get the living shit kicked out of them. I have absolutely NO respect for them. Their rationalization of their passive stance, their denial, their fear, does not belong ANYWHERE near my situation and those of the rest of us who are having our clothes burned off of our backs as we work our way thru fire to find our children.
F'em! AND the horses they rode in on! Either you're for us or you're against us, there is no middle ground with me. I'm too damn tired, too burned, too pissed right now to hold hands with a bunch of pussies.
And here comes the H1N1 vaccines.
Posted by: | August 02, 2009 at 10:42 AM
Strong writing, Crystal. I think your premise that "ND moms" are in it for their children is about 80% flawed. They seem to fit in with the 20% of our population that is impervious to any data that runs counter to their ideology, which they adopt as a faith in place of knowledge. You could no more "debate" with one of them as you could with "birthers."
ND is ultimately about them, not their children.
Posted by: David Taylor | August 02, 2009 at 10:34 AM
OMG...I've got an article coming out on Sunday in AoA. I bet they trash me, too. :) Bring it on!!! :)
Thu Jul 30, 06:09:00 PM EDT
FOUND THIS TODAY ON JOHN BEST'S BLOG
Nice Crystal...nothing confrontational about this, is there??
Bringing it on...as requested !!!!
I just found a new comment:
Bensmyson, great points. If it weren't for biomed, my son may well have been dead by now: run over by traffic, drowned in a body of water, or maybe lost in the woods somewhere.
Posted by: Elizabeth | August 02, 2009 at 04:42 PM
REALLY NICE !!!
Latest from Crystal's comments on her blog
and what's with the "beware of"..like I have power ??
Does the "Claim to" sound familiar...?
Man...this is pissing me off...
this was commented today on Autism Bitch's site...
yeah, like that will happenCrystal,
I see the game you are playing....you just want to make it seem like you are the "good guy"...well,
you have some pretty crappy players on your side.
I wish you well, but I really hope your child can make you happy...
I doubt it though..
You seem to be happy wallowing in your unhappy marriage and blaming autism for it...
When you let John Best post and did not allow my very "tame" post to rebuttle being called a bitch..you defined your agenda.
If you want respect from people, you have to respect them...
The Pharma comment is not worth commenting on, but I did rebuttle on my site...
Where I will post this also...
I hope you get over yourself quickly...
Your child needs you!!!
New post today
I have tried to reply 2 times and have not been accepted....oh, those pesky "agents"...
A new post on Crystal's blog...still not being able to respond ??
I wrote this to Crystal in an email tonight
I thought you would be a "bigger" person than you are presenting yourself to be.
I enjoy the bashing I am getting on your blog..so much so that I am putting it on my blog.
I do not believe you and your "agent" story....a blog is a private enitity.
I would think your "agent" would be more concerned with you bashing a mother of 6, some with
Autism, than me posting on your "precious" blog...
I am surprised also that a mom with a child with Autism would happily let others call her
a "bitch" and a Pharma shill...
Like I said, you have defined yourself to me...
I hope your son gets better so your life will improve. I do not see this happening while he
still has Autism...something I find very sad !!!
I am done with her....she is way too sad for me...