It makes my eyeballs explode when Jenny McCarthy is cited as an autism advocate. It pisses me off that her son and Leelo have the same diagnosis, when they are so obviously very different children with dramatically different needs. She says that Amanda Peet hasn't walked in her shoes, that she doesn't get what it's like to have a kid with autism. I would point out that my friends and I have walked in Jenny McCarthy's shoes much longer and with less "success" than she has. And few of us still believe that vaccines caused our kids to be who they are. She does not speak for us, do you hear me? Don't ever think she does.
I especially don't give a shit about anyone who can only talk about autism in terms of recovery, because that is disrespectful and just not realistic for most families with autism. Are we failures because Leelo is still autistic? I hardly think so. Newly diagnosed families need to put their energies into approaches and therapies that will help their children gain real skills (modified ABA, speech therapy, occupational therapy, social skills groups if they have the language), and then try the more harmless vitamins and supplements/BioMed/diet approaches if they have any energy left over.
As for the vaccine issue: my short version is that vaccination is a critical part of our social contract. My long version is more complex:
I think that Jenny McCarthy and most parents our age don't understand what preventable diseases are like because *we* were all vaccinated against them, successfully. I don't fully agree with Amanda Peet, either. I think that if your family has a history of neurological or immunological issues, you should space out your kids' vaccinations. I usually but not always trust our medical establishment, remembering how Stomach Ulcer Guy got slogged through the mud until his peers realized "Oh wait, sorry, he's right," and set him up for a Nobel Prize. I respect the cautious position of The MIND Institute. I think we should all think and research for ourselves, and look past cardboard cutout celebrity messengers and into the research behind their messages.
Anyhow. If you followed me on Twitter you would know that today I won a brand new Vespa! And that Leelo's social worker agreed to pay for his camp and more respite hours, without even blinking! School raffles and regional centers FTW!
If you were in my house, you would know that Iz and Mali were introduced to the term Epic Fail, when I gave Leelo a small bin filled with pinto beans so he could have some happy sensory time while I was prepping his dinner, and he immediately swung the bin in an arc so he could watch the beans spray throughout the kitchen and living room. I retaliated by grating carrots into his pancakes. Little bugger ate them right up and never knew the difference.
Off to sleep for a scant few hours before Jennyalice, DoubleTrouble, & I go stake out the office of the camp mentioned above so that Leelo can be one of the very few 1:1 campers at said camp. Wish us luck.
Technorati Tags: autism, autism blog, vaccination
Wells said! Jenny M. actually had the money to do the necessary 80 kabillion hours of intervention her child needed. She had the time or could pay some one to take her child to & from the 80 kabillion hours of intervention. She got in faster to those places & had connections cause of who she is. She had a kabillion dollars to pay some one to cook,clean, pay her bills, run her errands, etc. so she could devote her time solely to caring for her child.ReplyDelete
Let her struggle like a middle class working parent who can't get government assistance to help her child. Let HER have to do the majority of the ABA hours herself since insurance won't cover, school doesn't have enough money & you mortgaged your house to the hilt to get what you can. Let's go back in time & make her "average" and not a celebrity dating Jim Carey (who has a kabillion dollars to help her as well). I so wish we could cause then we would see if she keeps spouting her mouth off about recovery.
UGH, I could go on, but this whole subject just pi$$es me off in regards to her & the media is eating it up.
End of rant!
Congrats on your wins today!
I completely agree with you regarding McCarthy. She is unrealistic and has enough money for great intervention which is vital.ReplyDelete
I completely disagree with you regarding vaccine safety. Doctors love followers like you. Do you think the AAP and the pharmacuetical companies gives a shit about your kid? Think again.
Another excellent Squid post ( :ReplyDelete
Thank you for providing me with a subject to bitch about.
Vo ist das Vespa? I'm coming to steal it from your driveway....ReplyDelete
ANY celebrity that is brining positive attention to a cause is someone that is ultimately on your side. Unlike most of us, she was able to pay/stay home to help her son recover. There's no reason to be bitter because she can do what is not likely for most of us.ReplyDelete
I don't have special needs children myself, but I provide respite and all day child care for families that do and your approach is totally demeaning to these families. I watch them run themselves ragged working two jobs or three jobs a piece, going to therapies, sessions, camps, appointments, engagements, seminars. Instead of giving up they do anything and everything they can. If they were told that wearing tutus and only eating artichokes would cure their children they'd do it no matter what.
Complaining about someone who has proven that recovery is possible is detrimental to your cause. Imagine back when the government thought these kids were hopeless, if you will. Someone (with a lot of money and help) proved to them that therapy helps and that they can be part of society. Now because of those people many forms of therapy, respite, heck, even diapers are covered by the government. Imagine where you would be without that help.
Vaccinations are... just... dangerous period. The chemical concoctions that they are made out of are much more dangerous than the diseases they prevent (and most don't really do that anyway). Mercury aside, what do you think these are made out of? Puppy kisses and licorice? Try fetal cells, ACTIVE bacteria and diseased cells, formaldehyde. Sounds yummy.
We may not have had to deal with these diseases but they much easier to cure than say... comas and death. I can nurse my babes through whooping cough, but I can't resurrect them. It's been estimated that a majority of babies that die of "SIDs" is really an undiagnosed vaccination reaction. I know this because it has happened to my family.
Besides if you're trying to prove your point, an unbiased source is what you need. PKIDS Online is very biased.
"Funding and Policy
PKIDs is funded by parents, individuals, corporations and foundations – this includes unrestricted grants from pharmaceutical companies."
I understand your frustration as a mom. I often find myself railing against celebs who have different views than I do, such as Amanda Peet. I found this post through Google's blog search, btw. Congrats on making the front page! :-)
I know this isn’t really related to your last posting, but I wanted to let you know about an upcoming webinar that you might be interested in. On October 15, a dietitian by the name of Judy Converse will be speaking about managing a GFCF diet. If you are interested you can register for the free event at:ReplyDelete
Katie, I have to tell you that you have no idea WTF you're talking about. Being a caregiver is not the same. Difficult? Yes. But you can walk away any time you want, save that you need the work.ReplyDelete
The only side Jenny McCarthy is on is her own.
@anonymous 6:23 AM. I certainly hope our doctor loves me and my kids.ReplyDelete
@Special Needs Mama: I have to figure out how to go get it! Will you come ride it when I do?
@Katie: Thanks for stopping by. Obviously you don't know us or how hard we have always worked to help our son. We stopped just short of the artichokes and tutus, and I'm trying to help other families conserve their precious resources and focus on the things that will actually help their kids. If they have time and energies for the non-invasive BioMed approaches, then anchors away, with my blessing.
I'm bummed that Peet used the words "parasite" because it detracted from her central message: *not* vaccinating your kids is dangerous, to your kids, and particularly to the children who can't be vaccinated (children under one for measles, children with some allergies, children with immunological dysfunctions, and, even, those with real cause to worry about autism in their families, and others.)ReplyDelete
So out to do some advocacy for Peet, who I admire for spreading that message. I was born in a country where people die of the infectious diseases we've forgotten about, or at least can't imagine killing anyone.
(So clad that you won at a raffle, and that respite care & camp were offered without stress).
Katie: I'm astounded to hear you suggest that being a caregiver is in any way remotely what we as PARENTS deal with. Particularly Squid, who, if you read the blog from the beginning, appears to have tried everything.ReplyDelete
Why are you Anti-Vaccine people so desperate to find reasons for why your children have autism, to find someone to blame, rather than to actually focus on your child? Telling people to forgo vaccines on their kids won't help your own children, or your friend's children, or your employer's children.
FIRST - It is not that because Jenny bigmouth McCarthy has gazillion dollars, and could afford all the available therapy in the world and some, that her son has "recovered". It has probably helped him, but it is not the reason why he is doing so well: in the weird shuffle of life, she got the kid whose neurological system is wired in a way that eventually caught up.
Good. Happy for her and happy for the kid.
But her experience is not like mine, or others. And yes, she needs to shut up asap, because her story is definitely different than the majority of families I know, and please, stop talking on my behalf.
SECOND – No reliable scientific study has been able to link autism and vaccines. Even the DAN site talks about spacing vaccines. So please vaccine your kids. There have been already an increase in measles outbreaks due to vaccine refusals.
THIRD - Katie, thanks for caring for SNK, we need more people like you in this world. Also realize that JM is truly not helping anyone by advocating scientifically unproven approaches and call a roach anyone who disagrees with her. Our community should be based on tolerance and compassion toward everybody. If she is advocating acceptance, understanding and tolerance toward our kids, she is not leading by example. I find particularly distasteful that she went after Amanda Peet even after she issued an apology. Not very tolerant.
FOURTH - *I* want to ride the vespa tooo!!!! Congrats, squid!
Why "modified ABA?" That's simply a joke of a term for watered down ABA which most districts and bad providers try to throw at parents. Hopefully they know better and don't fall for it. Maybe what you are trying to say is intensive ABA which emcompasses NET, VB, theory of mind, executive functioning, perspective taking and other sound ABA techniques.ReplyDelete
Just because specialized diets and biomedical interventions didn't work for your child does not mean they won't work for another child. Also, so many parents think they are doing intensive ABA when in reality it is in the hands of para professionals who really are not trained well at all and make the child worse. That's what parents should be aware of and watch out for.
You also seem, just looking at your posts from the summer, to spend a lot of time on vacation and away from your son. Most parnts I know are with and working with their child constantly, even if they do have other children. Sorry, but consistency is the key and you even write that your son's supervisor is frustrated that you do not even follow through with a simple visual schedule at home.
@anonymous 6:58 AM:ReplyDelete
Modified ABA meaning more than just drills at a table, incorporating the child's interests to make the therapy at least partially self-reinforcing, and done in a variety of settings to lay the groundwork for generalization skills.
I'm doing a good job with my challenging son, am striving to do even better, and I'm taking care of myself as well. Nothing wrong with any of that.
Anonymous - be very very careful to pass judgment on others, especially when you have not walked in their shoes. You could end up becoming the bully.ReplyDelete
I'm sorry if it sounded like I was implying that you haven't done everything you could. OR that I knew what you were going through because I care for special needs kids.ReplyDelete
Rereading it sounds like I got a little carried away and definitely didn't mean to hurt anyone's feelings. My point (which got super inflated) was that almost anyone who's making advances FOR these kids is one form or another, is helping.
No, I don't know you and have never read your blog so I don't know what you've done. I also don't know what goes on behind the scenes in your family so I apologize if I just burst in and got all rude I'm sorry. I'm kind of socially inept like that. :-)
@DivaLea and Anonynous - I did not suggest that being a caregiver is the same as the parent. I know that they not even close considering my special needs ward is a billion times easier to care for than my own children and i KNOW that's not how it goes for the parents. I said that for the little bit I time I see the parents I know that they're running themselves ragged. I also know that they do anything that they think might help, as ridiculous as it sounds.
@Captain Dan - When you phrase it the way you do I see your point now. Because she got lucky, many parents may incorrectly think their kids are recoverable? Is that it? Because I totally understand that. Kinda like the women who lose a 100 pounds on a dangerous diet, but the majority certainly don't.
I am not sure about the whole vaccines=Autism thing, as I have never researched that aspect myself, so it's not something I am suggesting. I distrust vaccines for other reasons.
"I'm doing a good job with my challenging son, am striving to do even better, and I'm taking care of myself as well. Nothing wrong with any of that."
THIS! Repeat it everyday! You are right and no one else matters but your family!
Captain Blog, you are my new hero. I am imagining you with a cape, flying through the blogosphere to dispense good sense and consideration for others.ReplyDelete
What elswhere said. Perfect, Captain Blog.ReplyDelete
"Biomed works for some kids and not for others" vs. "Some kids naturally grow out of their autistic behaviors." Which seems more plausible? I'm seeing mommies wanting to pat themselves on the back for something that would have happened with or without the homeopathic eye-of-newt drops.
Finally someone dares to question Jenny McCarthy. All I read/hear are people fawning over her, which baffled me, because even without a special needs child myself, I always wondered how much she was helping/hurting the cause.ReplyDelete
Enjoy your Vespa!
I'm still laughing at the title..........glad Leelo didn't notice those carrots!ReplyDelete
Wow! How have I missed your blog in all of my autism internet ramblings? I'm lovin' it!ReplyDelete
And as another Mom of a child with autism, I gotta say I wish she would "Shut up!". She makes the rest of us look bad, like we think we're some kind of experts because we can use google.
"she" in the above comment of course refers to Jenny McCarthyReplyDelete
I have a son with Asperger's (yes, I know having a child with Autism is much harder and I have a lot of respect for the difference). I have a strong family history for Asperger's. Squid, I've been reading your blog since before my son was born and all I can say is thank you for putting yourself out there. You help more people than you know. You are a big part of why I was able to jump into helping my son instead of fighting with denial and grief.ReplyDelete
I do not want to cure my child. I want him to grow up into a happy, healthy adult. Healthy doesn't always mean perfectly neurotypical to me. Yes, I know there are many differences between my son and a child with severe autism. I just find the idea that autism must be cured completely to be somewhat disrespectful.
I was scared of vaccinating. We've followed a slow schedule. If the vaccines did not work, the diseases would still be around. I don't think it's correct to say the vaccines are worse than the diseases and the diseases are no longer present. If that is why you choose not to vaccinate you might want to do more research.
I chose to vaccinate because Whooping Cough can kill, is present in our community, and very often leaves lung scaring on kids with even minor cases, which can cause many problems later. Measles shows up sometimes, particularly in communities with lots of immigrants, and can cause long-term side effects or death. It is more likely to do so than the vaccine is. Tetanus is present in the environment and my great-grandfather who had it (tough old farmer) said he wished he'd died. Chicken pox is dangerous. Even healthy children die from it or are hospitalized. I had a minor case as a kid and have permanent tinnitus and minor hearing loss as a side effect.
I made the best choice I could for my kid, choosing what I believed to be the lesser of two evils. And as someone who works in the medical field, I can tell you we do care. I have never met a doctor, administrator, nurse or other professional who wanted to hurt kids to achieve a bottom line. The medical community is not perfect, but we are not out to get you.
@Maryann, thank you for writing. And please don't feel like you have to play down your own struggles -- that was not my point. If it's hard, it's hard. No one else is living your life. Also, you don't claim that your experience gives you the right to speak for every other child with your child's diagnosis.ReplyDelete
Your empathy is sufficient. Thanks again, and good luck.
Everyone else: it feels so inadequate to once again type "thanks, all!" but it is heartfelt. Thanks.
Jenny McCarty and her son are gracing the cover of this week US magazine, with a title that says something like: beating autism: "how i saved my son"ReplyDelete
I found your blog just by surfing the net and my husband and I are standing as I type gving you a big ovation. This woman makes my skin crawl and to see all of these moms follow her like she is the Autism Savior makes me want to gag. She is to appear on Larry King once again what about other moms that have kids with special needs why cant we get a chance to tell our story? Why must we be subjected to her poor choice of words.ReplyDelete