Wednesday, October 22, 2008

Mcjenny, you do not speak for me.

Jenny McCarthy seems to spend an awful lot of time telling the world how she is our voice, she speaks for Us. Us, as in parents of, and children with, Autism.

McJenny, you are not my voice. You do NOT speak for me. You do a great disservice to the Autism community in general. I'm thrilled for you that your little one was "cured" but I'd rather focus on treating my own child than obsessing about why he is Autistic, and desperately trying to force some semblance of a "cure" on him. Honestly, it's wonderful if her child was "cured." But (and I may be wrong) my thought is that for the most part, the kids who get "cured" are the ones who were so high functioning in the first place that it didn't take a hell of a lot to get them where they needed to be. Kids like Jaymes, or Leelo seem much less likely to be "cured" in the same manner as McJenny's kid.

I worry about the many parents who will hear McJenny blathering on about her recovered child (recovered from what? Addiction? An infection? Autism isn't an illness, it is a difference in the wiring of the brain) and decide without bothering to educate themselves, to not vaccinate, to use their children as lab rats for invasive treatments with zero scientific proof (chelation comes to mind) all because some pretty celebrity told them to do it. Or the parents who are filled with false hope of one day having an entirely "normal" child, and later down the line realize that it just isn't happening. The letdown is harsh- I started out as one of those myself.

If you have the money for all the vitamin/supplement/dietary stuff, go for it. You're unlikely to damage your child that way, and some (though not the majority) do improve as a result. Jaymes did not, and I have to wonder if some of the parents who are 100% gung-ho about the DAN! stuff are imagining improvement where there isn't really much. Doctors endorse things that -work-. I was talked into trying GFCF by our pediatrician back in Florida, because he thought it might help. He did not, however, suggest that vitamins and special foods would be some magical cure.

The people I had pushing the alternative stuff on me- chelation, vitamins, supplements- were people who would profit from it. The nutritionist who had hundreds of dollars worth of vitamins for sale, the crazy chirpractor with her very own chelation set up. None of this was payable by insurance- no, these were hefty prices that went right into these people's pockets. They were promising a cure, which should have tipped me off immediately. Of course they'll go on and on about the wonderful benefits- it's their job, their income. They don't give a rats ass about your child. People like this prey upon the desperate and the uneducated for the almighty dollar. Maybe someone has met one who will do free chelation for the poor?

I keep hearing this argument that doctors are in it for the money, and the herbalists and chelation folks are trying to save our kids... But Jaymes' doc makes very little from Medicaid, and spends tons of time with him anyway. The herbalists get every cent of their exorbitant fees. Seems like they're making more off their wares than the docs are off vaccinating Medicaid kids.

I will always swear by the things that I've seen proven- Speech and Occupational therapy, a structured routine, and medication as needed. Alternative therapies that have a proven success rate- music therapy, hippotherapy, pool time. ABA, though we have not experienced it ourselves due to lack of funding.

The day I see real, scientific proof that vaccines cause Autism, that chelation cures Autism, that therapeutic foot baths cleanse the brain... I'll admit that I was wrong, and I will explore some of those things. Not until I see proof. Not some outdated study that's been proven bullshit, not some desperate parents trying to find someone to blame, who could afford a good enough lawyer to win a lawsuit that all sides knew was just a ploy to make money and publicity for the anti-vaccine movement.

I'm all for the whole Green our Vaccines thing. Safer vaccines are nothing to complain about. By all means, everything should be constantly working towards being safer. I'm all for staggering the vaccine schedule, rather than doing a ton at once. I'm also for responsible parenting, and I will always vaccinate.

Once again, McJenny, you speak for no one but yourself. Enjoy your child, take pride in your accomplishment. Jaymes isn't broken, he doesn't need to be fixed. He needs help to learn, function, and be a happy member of society, but he is NOT broken or deficient in any way. I work towards helping him, not "fixing" him.

To those parents who have found McJenny a source of inspiration and hope, and who are doing their best to help their child while remaining educated and informed about the various treatments, good for you!

5 comments:

FieldingHurst said...

I am pretty sure Jenny has never claimed to speak for all autism parents.

"But for the most part, the kids who get "cured" are the ones who were so high functioning in the first place that it didn't take a hell of a lot to get them where they needed to be." For someone who accuses someone else of over generalizing, you sure seem to do a lot of it yourself.

Having a "miserable" marriage as you have described doesn't help. A lot of these kids, mine included, pick up on your vibe and it impacts their well-being.

I personally like Jenny and she is entitled to her opinion as much as the next person.

Captain Blog said...

Amber,
found your blog through Age of Autism comment and Squid. Thanks for your beautifully eloquent post.
I love the part about you not wanting to fix your child, only support him to reach his potential.
I also read about your trouble getting ABA. Isn't the school district providing that?

You are a great mom, kuddos to you, keep up the good work.
I wish the best to you and your family.

colorisnteverything said...

Squish,

That was pretty interesting. I never thought about doctors as being "money grubbing" because they pretty much saved my life, but I guess lots of people *do* feel that way. The problem I have with unlicensed people is that they don't take a Hippocratic oath and they don't have to be held to a certain degree of truth.

It's like saying that kinoki foot pads will cure my asthma or Magnesium is a miracle cure for my asthma attacks. Nope. Neither is. It's a waste of time/money. Sure Mg won't do you *harm* per-se, but none of my specialists seem to think it matters. It's just a pricey gimmick for the "alternative medicine" woman to sell me. If you want vitamins, do the research and go to vitamin world and get them yourself.

~Michelle~ said...

Hi Amber,

I found your post a little while ago while doing a google search on 'autistic toddlers' and I've been lurking for a little while. My little guy turned out to have Sensory Processing Disorder and not Autism, but I have to say I enjoy reading your fresh view on everything autism and child related. I read the article I think you're referring to, and I was also outraged about her declarations that she had 'cured' her son. I think it's very unfair to all the scores of parents out there that have autstic children that *can't* be cured with just vitamins and a wheat/dairy free diet. I think it gives false hope and it's just wrong. I think *YOU'RE* doing a great job being the voice of autism, and both Jaymes and Sierra, from what you write about them, seem like fun kids!
~Michelle

Amber DBTD said...

Captain Blog, your comments mean a LOT to me, I have great respect for you and your blog ( :

Color, you know I always agree with you <3

Michelle, thank you for the sweet comments!

The important thing to remember, of this blog, is that I speak only for myself and my kids. If I claimed to speak for everyone else, I'd be doing the same thing I'm whining about McJenny doing.

My hope is that my experiences and thoughts can give others some inspiration or ideas.