I recently posted an entry about the health costs being one of Jenny McCarthy’s Mother Warriors can exact on the Mother Warrior in questions kids. It was a pretty horrific litany of blown veins, heavy medications and screaming kids being restrained by adults in order to receive IV Chelation. Sometimes in babies as young as 13 months.
Today I thought we might take a look at the range of treatments on offer and how, in order to be a true Mother Warrior, you are expected to know them all.
Stan Kurtz recently produced a list (PDF) of the typical treatments one of Jenny McCarthy’s Mother Warriors are expected to know and use. There are a mindboggling 150+ different treatments.
Of course, a parent is not supposed to use all 150+ in one go. No, they are expected to use the ones that ‘work best’ for them. This is of course under the care of a DAN doctor – who sometimes might actually be a doctor, sometimes they might not.
In reality, what we have is a list of things that are used on a trial and error basis. There is absolutely no way to know which are having an effect and which are not. Even the most simple test of – is my child ‘less autistic’ than they were before is not an accurate judge. It is well know that autistic kids improve with age and to be perfectly frank, most of the ‘recovery stories’ I’ve read are stories of kids who are still very much autistic and really not in a very different place than my own.
A Mother Warrior on her blog reports the cost of ‘recovering/curing’ her autistic child:
$15,039
Here’s the breakdown:
DAN Doctors $2000
GI Doctor $6000
Private Labs $2000
Supplements & RX $2000
Speech & ABA $3000Additionally, we spent $500 for respite care once a week (a special needs babysitter). We also paid an unknown amount in expensive GFCF foods, like $6 per bag of wheat-free pretzels….
In 2008, we will add the additional expense of IV chelation at $320 a month.
And how do they describe their child now?
After implementation of the gluten-free, casein-free (GFCF) diet, our son regained eye-contact and lost the repetitive behaviors. Six weeks after initiating an anti-fungal drug to counter the yeast overgrowth in the intestines, our non-verbal almost three-year-old child began to speak and gesture. He gained 120 new words in two months. We supplemented specific vitamins and minerals, and we saw evidence of his immune system starting to respond properly. After treating the gut inflammation with anti-inflammatory drugs, he began to eat a better variety of foods and started toilet training.
………
He is now four years old, and he speaks in simple sentences. He has mastered letters, numbers, colors, and shapes. He sings songs and laughs at humorous things. His demeanor is sweet and cute. He will attend preschool with his peers this fall. All of his special education teachers and therapists are amazed by his unprecedented progress.
I always feel deeply saddened when I read stories like this. This is just simple development and education. I know so many autistic kids who are at similar stages of development and/or could report near-identical things. And yet these parents have near bankrupted themselves for no real reason.
This is far from an unusual situation. A 2005 survey reports:
The mean number of current treatments being used by parents was seven….
These parents are bankrupting themselves and the DAN fraternity et al are watching the money come rolling in.
Getting back to Chief Mother Warrior McCarthy. Apparently in her new book and on Oprah she veered between describing her son as ‘recovered’ and ‘recovering’:
…And lets get back to where this started. Jenny said her son Evan, HAD autism.
This surprised me because in her both of her books she repeatedly says he is IN RECOVERY or RECOVERED from autism. She doesn’t ever say CURED – though it is implied. In her book she says that if/when he is sick – his symptoms of autism resurface. So, then it is not really ‘gone’, right? And all the biomedical treatments did with him (the gfcf diet, supplements, threelac, b12, [chelation/HBot]) does she no longer need to do these? I’m just thinking out loud.
This isn’t the first time McCarthy has cut her message to her audience with no regard for the accuracy of what she’s saying:
So, in April 2008, Evan McCarthy is recovered (‘we believe what helped Evan recover…’). Not recovering but recovered. We can also see that among the treatments the helped Evan ‘recover’ is ‘detox of metals’.
Fast forward two months later and apparently Even needs chelation. Why? Back in April he’s recovered. Now he’s not? Now he needs chelation?
Apparently, at the last Autism One conference, McCarthy was asked about the expense of treatments. She answered:
I just need you guys to be creative in your thinking and say we’re going to give up Starbucks this year.
Does anyone you know have a coffee habit of $15k per year?
Jenny McCarthy isn’t living in the real world. A massively well-off celebrity lecturing people to give up a coffee in order to finance a totally fabricated treatment schedule that she can’t decide from one month to the next has cured her son or not? And people _listen_ to her? People give her _credence_ ?
Katie Wright was interviewed by Jenny McCarthy for her new book. Another rich Warrior Mother who doesn’t live in the real world where scrabbling to make ends meet is the first priority. Not ‘living in the moment’ and not really having to worry about where the next months food is coming from.
Warrior Mothers? These people have fought for nothing.
Left Brain Right Brain 
That story of “recovery” sounds A LOT like my Andrew’s progress over the last 2 years.
This amazing progress is attributed to old fashioned government funded SLP and OT, the dedication and patience of his wonderful therapists Rachel and Terri, and an infinite amount of love from all the people in his life. I find it just as amazing as you that people with loaded bank accounts can dare tell me how to spend my money, particularly when I don’t have any, lol.
Same for us, Judi. My son is now showing interest in other kids, has an easier time getting “unstuck” from a perseveration, goes on “playdates,” etc. None of this was happening a year ago. But in the last year we have not changed a thing. He can eat anything the rest of us eat, he sees a regular pediatrician once a year for the standard well visit, and is only getting the therapies (OT and speech) that the school system provides (we can’t afford any private therapies).
My son was diagnosed a year ago by a developmental pediatrician who told us that, although our son’s development was going to be different from that of a typical kid, he would certainly continue to develop and “improve” with time. Now, if we’d seen a DAN doctor instead, I assume we would have been told our child would need supplements, treatments of all kinds, etc., in order to “improve.”
Same for us. What is described is just normal, natural progress for an autistic child. But that one line, about the child’s teachers and therapists “being amazed by his unprecedented progress?” Well, I call bull on that. Any teacher or therapist would have seen exactly what that mother describes over and over, if it really is a mother and not a DAN’s secretary being paid overtime to generate internet personae on her lunch break. “Unprecedented” my behind.
Sully
Stan Kurtz’ list does not contain the Lupron protocol. Since upward of 800 autistic kids have been subjected to this barbaric treatment (more so than chelation), the omission is serious. Perhaps Stan could rectify that before circulating the list further. Might also be an idea to fix the misspellings.
Its part of every single ‘recovery’ story I’ve ever heard. The US must be full of constantly amazed teachers.
Alyric – Stan’s dyslexic so we can let him off that one 😉 but the Lupron protocol – yeah, I forgot about that.
My favorite quote from Mark Blaxill in a transcript from an IOM meeting on autism and the “environment”
I have a feeling that Blaxill has tried all of those 150 treatments on Stan’s list. But I doubt he would share which half he thinks were worthless for his daughter.
What’s funny is that the children of the activists aren’t cured, and frequently the activists have had the best of the best of the DAN! dox supervising their kid’s “recovery”. Bradstreet supposedly was Lenny Schafer’s kid’s doctor. Lenny used to have a statement on his SAR website that Bradstreet was treating Lenny’s son for free. It was like the statement was the payment to Bradstreet for seeing Lenny’s son… though maybe all the consultations took place in absentia, like over the phone.
The activist parents who have a cured kid show up out of nowhere with the cured kid, like Julia Berle with Baxter, and Jenny McYeasty with Evan. They aren’t moms who have a public history of what they were doing to cure their kid like many of the mercury parents. It’s possible to document what some of them have tried and when and what they thought the results were by looking at Internet bulletin boards. It’s fun to do because you can find all these contradictions in what they claimed their kid was doing at a particular time.
Dr. Amy Holmes is a good example of that.
And of course if you look at what Jenny McAirhead has been claiming about her son it changes from month to month whether or not he is “recovered” and what “recovered” means, and it’s vague for whom recovery is possible. So it’s like you have to start immediately “working your a** off” according to Jenny and spend a gajillion dollars even if you don’t have it (did anyone else picture Marie Antoinette and “Then let them eat cake”?), because the window is closing and you have to reach through and drag your baby out of the window… but then even though the window is closing fast and you have to hurry before it’s shut, it never shuts because you can’t give up hope for the older kids whose parents never hit on the right combo of junk to drag their kid through that window!
In the first quote, if the witer is going to talk about her child’s progress then it would help if she didn’t include things that would be considered perfectly normal for any under three year old. Plenty of under threes are still in nappies. Plenty of under threes engage in repetitive behaviours. Plenty of under threes aren’t interested or know their shapes, colours etc. Yes, some of those children will be autistic, but the vast majority won’t be.
But that one line, about the child’s teachers and therapists “being amazed by his unprecedented progress?” Well, I call bull on that.
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Its part of every single ‘recovery’ story I’ve ever heard. The US must be full of constantly amazed teachers.
I sometimes wonder if the parents who think this do so because they see words like “unprecedented” and “exceptional” and “remarkable” used in evaluations, (along with wanting to believe they see the teacher’s/therapist’s completely amazed reaction). I know I’ve seen those words enough times over the years in several of J’s evaluations and plan summaries. I finally asked one therapist why she put that when she and I both know it’s just J making natural progress at his own pace. There’s nothing “unprecedented” about it. She told me they use words like that to justify MA continuing to pay for the therapy. MA sees progress and the therapy continues. So they claim my son has made “exceptional progress” so his speech therapy can continue when really his progress has been a steady one over a period of time. I’m still not sure how I feel about that, especially if the progress is deemed so good by MA that it decides a child doesn’t need anymore therapy. I’ve had that happen and I had to fight to get J’s therapy continued. I want to see progress, but not at the risk of having my son’s therapy cut short. But, I think, for those parents desperate enough seeing those words are all they need to believe their child is recovering.
Meanwhile, I’ve watched my son progress and develop at a pace comfortable for him. He’s had speech and OT with awesome therapists, a wonderful education system with dedicated teachers, and the love and support from everyone around him.