Thursday, September 27, 2007

There is a cure for Autism!

...or so Jenny McCarthy claims in her book Louder Than Words.

The back cover of the book states that if someone you love is diagnosed with Autism, this is the first book you should read.


If someone you love is newly diagnosed, this book will scare the SHIT out of you! Do not read it until you are fairly comfortable with the diagnosis!

Louder Than Words irritated me for a number of reasons. I got the first bad taste in my mouth from the book's introduction by Dr. Jerry Kartzinel, where he states:

"Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life's marrow out of the family members, one by one. It relegates every other "normal" think to utter insignificance."

For sure something I'd want my child's pediatrician to tell me.

So, Jenny goes on doing everything in her power to "fix" her son, Evan,- as all of us moms would...right moms? Moms? You do want to fix your broken baby... right? Why are you all looking at me like that?
See, Jenny seems to think that there are categories for moms. You either fall into the category of the "I'll try anything if it will help my kid recover"mom, or the category of the "woe is me" mom, who doesn't believe in alternative treatments, doesn't want to hope, and may actually like being in the "victim role". Hmmm...I wonder which one I fall into?

Moving along...Jenny is so badly wanting to write this book as a typical mom, to other typical moms. However-she is not a typical mom...she is a celebrity.

Let's see...
She buys a heart monitor for $5,000 so she can have peace of mind while Evan sleeps.
When she had to take a plane to get to Evan in the hospital, she paid $7,000 for a ride in a private jet.
She enrolls Evan in exclusive programs and bypasses waiting lists because of her status.
She hires an in-home ABA therapist.
She hires a nanny.
She spends $4,000 a week in private therapies such as PT, Music, and Play.
She hires the top neurologist in the nation.
She has the best DAN! doctor in the world in Texas.
She has the best immunologist in the world in San Diego.
She gets funding through Autism charities due to the Autism expense.
The list goes on...

Wow! Sounds just like me! Except I'm broke, and can't provide that kind of "healing" for my son. Oh yeah, and I don't have connections to get me into the "top docs" or bypass the waiting lists out there. And I don't have the convenience of a nanny or in-home therapists. And that I've tried to get "assistance" and funding, but I'm told all too often that I "make too much" (at $29,000 a year). Funny...I didn't know I made more than Jenny McCarthy.

I'm not saying Jenny is a bad mom, I think she's a great mom actually. I'm just saying she's not exactly what you would call typical. She also claimed to have no resources. Right.

All the talk about treatments, broken children, drugs, and the time frame for recovery, is scary stuff- especially for a parent who has just received a diagnosis. It probably was best, the things Jenny and Evan went through. She admits that she didn't accept her son until he was considered recovered. Once she did though, she felt as if a weight had been lifted.

Some people have difficulty accepting a disability. If it's not typical, it must be broken-we have to fix it because it's not good enough like this. If a parent cannot accept their child as is, sees the child as inferior, incomplete, or in need of repair, the child will know that. That child senses that they are deemed something is wrong with them. Again, I'm not faulting people for feeling this way, but here's my point- In these families, I think it is best to seek out any sort of "recovery" you can. The bottom line is that a child has to feel a full part of the family, like a complete person, and have a healthy attitude toward life. If people need "recovery" to be able to accept their child, go for it.

I accept my son. He is a gift. Autism is a part of that gift, and not a part that got damaged. It's a part of him- and I love who he is, Autism and all. Is it an easy road for me? Hell no. Is it a journey worth making for him? Hell yes.


kristina said...

Great post----especially how you point out that Jenny is not (though she is, too) like us---that most of us manage on the resources we have, and our tired wits! best wishes---

Patrick said...

What I have a hard time accepting at this point, is that if Evan is only 5 or 6 now, how can she know that he is recovered?

Many kids don't even get diagnosed until 8-11, if their more of the Asperger's variety. I beleive he may have an Appearance of recovery at this point, but I really think a few more years are needed for a complete assesment of the claimed state of recovery.

Good heads up on the book! Thanks for the clarification.

Pickel said...

Great post. You're right...its nice that she gets respite ANY time she wants it...can have a cook for the GFCF diet, can have a maid do the grocery shopping instead of having to deal with taking EVAN with her (something that is a BIG issue for us right now).

My husband and I decided that when we did our natural biomedical chelation and paid about $5000 that that was as far as we would go. The rest was up to our natural resources like school. We just can't do the rest.

My son is doing well, has not been diagnosed yet, but like the previous poster...I think he will be. He is just not "all there".

mommy~dearest said...

I do the best I can with the resources I can get. Yes, there are people out there who sell their houses, re-mortgage and re-finance until they're over their heads, take out loan on top of loan, and literally go into debt over treatment.

Providing treatment to our kids is important, but so is providing staples, like a place to live. My family? We also like to eat food. People in houses tend to eat. Don't get me wrong- I owe people (mainly my parents) plenty of money for helping me support Jaysen's therapies and such, but I'm not going to raise my family in a cardboard box just so the world's best Dr. can tell me that I need to make my kid "normal".

From what JM was describing, Evan wasn't Aspergers or "High Functioning". I got confused because it seemed to me that he kept flip-flopping, like he was okay, but then would have acute bouts of Autism. Her claim to "recovery" would be from her own observation, and from doctors/therapists telling her that "there's no trace of Autism left"! Wow- the Autism demon has been vanquished. I feel a new TV movie coming on...Jenny the Autism Slayer. :)

Pickel: Out of curiosuity, how is your son getting services from school without a diagnosis? Awesome school! I'm thinking that with a diagnosis, the doors would open up even more, and you may be surprized at the things that are available to your son. Good luck!

Casdok said...

Well said!!
And another hell yes from me!

Maddy said...

I suspect my piggy bank isn't up to the job of autism.

wskrz said...

Great post!

I love the breakdown you gave as to how much she's spent. I tried to explain that in my blog and got jumped on for "not doing enough." Yeah, apparently I'm also supposed sell all my wordly possessions to help my son too. I don't know what quality of therapy he's going to be able to get if we're living on the street....

And I can only dream of a nanny. Heck, a babysitter for a couple of hours would be heaven too!

Do'C said...

Hell Yes too! :)

MOM-NOS said...

Thanks for posting this. It gives me the shivers. I've been avoiding the Jennyfest on tv and in magazines lately without really knowing why. Sounds like I made a good call.

Jen P said...

Thanks for this post. I'm going to link to it in a future post of mine because it says what I was feeling inside but wasn't really sure exactly how to say it. Plus I'm not very confident yet in forming opinions as a parent of a newbie dx AS son.

I love my family - quirks and all. It is actually what makes them who they are.

Anonymous said...

Loved this post. It actually helped me, too, focus my thoughts on JM and all the media attention she has been receiving. I struggle with her b/c I think she will definitely help some kids and families...AND..also scare some to death, some unneccessarily so. not all "toe walkers" have ASD. so anyways, thanks. I have struggled so much with accepting my son's autism and recognizing it's really his ASD dx. I'm not suffering with it, I know, realistically, but sometimes, I really feel I am. I know this sounds confusing. But I love my son, enjoy my son, delight in my son, and little by little, am learning to accept him AS HE IS everyday. in some ways, he's the best thing that ever happened to me.

Daniel's mom

mommy~dearest said...

Actually, Daniel's mom... it makes perfect sense.

I know many people who accept their children "as is", but are not so quick to accept a diagnosis. I think that's great.

If I would've accepted Jaysen's previous diagnoses, let's see...I'd have a retarded aspergian with hyperlexia. Or something of that sort.

Once the diagnosis fits, it takes a whole new adjustment period to accept that diagnosis applying to your kid.

Your confusion is totally normal! Hang in there, it does get better. Let me know if I can be of any help!

Brian said...

Good comment but I need to buy Generic Viagra and some drug to autism do you have it in your pharmacy??

mommy~dearest said...

Um, no.
But I might have some in my couch cushions. I tend to eat generic drugs like popcorn when I'm watching TV. Y'know, just throw 'em all in a bowl with a little salt. Wash 'em down with some OTC elixirs. I know- totally off my diet.

Do think it odd though, that you made "autism" a verb. Let's conjugate that. I autism, you autism, he autisms...

Yes, I know- I'm messing with a spam comment. I just couldn't resist.

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