Sunday, April 24, 2011

Dear Mary:

jDear Mary _Flashlight:

Something you said put a nickle in my nickelodean, so to speak....It got to be so long, I decided to make a new post of it.  I will try to get back to your blog, if you have one, and read up on your situation so I don't end up asking a lot of unnecessary questions.

I'm just putting it out there. I don't necessarily believe it, in our case, either. I think it's probably a little environmental (Our family is made up of "little professors")AND genetic (I'm guessing his birth father was learning disabled, as in, not public school material---teaching disabled) AND possibly an inherited maladption to food/environment/whatever, because of the preponderance of epilepsy in people with autistic personalities. I say personalities because, for the most part, it is behaviorally diagnosed. Excepting Tuberous Sclerosis, Neurofibromatosis, Fragile X, neurological manifestations of the mother's Rubella illness while pregnant (which, thankfully, we don't see much anymore), and drug interactions with the fetus's development, as in valproic acid...we have no idea of the reason. The only thing we are “pretty sure” of is Bettleheim was wrong. That last one? It's mostly the mothers who believe that with all their hearts. Society, well, hasn't exactly caught up.

Interesting that the study seemed to be about the addition of DHA and AA, and lack there of,not breastfeeding necessarily.

What I do believe with all my heart, is that some forms of Autism may be totally diet related, and not in "poisoning" except perhaps by a genetic inability to process, say, amino acids like in PKU. Nature poisons those kiddo's. I had a friend whose husband was unable to remove iron from his body. He was slowly poisoned by iron andit led to much suffering and an early death. His children have been tested and can treat the disease with that knowledge, and not suffer as their dad did.

We are fearfully and wonderfully made, but there are as many maladaptions as there are people. We just don't know it yet.

But, Mary...I'm LUCKY. Ben is so mildly 'touched' it isn't even funny. I didn't know that when he was a kid.

I am thinking of kids who undergo regression. At about age 18 months. What changes????

It could be diet as it changes about then and kids eat Western food. I am SO allergic to Red dye 40 it isn't funny( I break out in hives. My eyeballs itch as we speak, as I accidently got some yesterday)...but it's put in everything, including hot dogs, make them more appealing...nasty! I've gotten to where I can recognize an unnatural color in salad dressings, check the label, and there's the culprit.

There could be an item in formula which is untolerable to some children, which slowly builds up. It isn't nature made. There could be a genetically maladaptive response to any food, as in PKU. It could be a natural personality trait, in the event of mild Autism, like my son....but I”ll be damned if I knew that when he was 3 years old. It was indistinguishable from any other type of autism, in my mind.

I guess I am not of a notion that severe autism and mild autism have anything in common but a similar developmental similar, in fact, that they are somewhat indistinguishable. Like a Neurotypical child, you don't call one with a profoundly low IQ severely neurotypical or severely normal.

Diarrhea of the brain...I'm sorry.

What are the specifics of your child? What age is he? Do you know whether he is mildly, moderately or severely afflicted? What do you believe was so extraordinarilly different about your child that IF your could bring it up to a scientist who would magically listen without judging...what would it be?

You know what mine would be? Recently, I've read that science has decided that fever/chills/puss whatever are the bodies response to bacteria/viral loads. That high temps and flowing mucous are a sign of an ACTIVE IMMUNE SYSTEM, not an inactive one. The child who never has a fever, than, has a poor immune system.

In Ben's first year, he NEVER had a temperature. Never. Except for the time I overdressed him for church and he heated up while waiting to get out to the car. I wish I could see a study of how some kids got better when they had fevers, when their immune system was in high gear...and how it relates to a possible low grade inflammation of the body system.

Like THAT's gonna happen. Science could give a fat rat's ass what I think. They didn't even notice our kids until it became lucrative (monetarily, prestigiously, whatever...), and the woo-ers were getting in on too much of the action. Bastards...

I guess it needed to be said. Sorry about the verbal blast.


r.b. said...

God may be subtle, but he isn't plain mean.
..................................... Albert Einstein

Sorry...I will occasionally put Einsteins quote in the comment section so I can remember it. That autistic man thought so much, between him and G.K. Chesterton, I could spend the rest of my life musing over their thoughts.

It has nothing to do with the post.

My apologies.

Mary_Flashlight said...

You know, I don't know that anything is SO different about the J-man that a scientist could look at it and say "ah ha!" Since we have a second boy now, we can look back on the J-man's development and say for sure, "Nope, he wasn't doing that at this age." I do think if we could control all of his sensory issues, he would exhibit fewer autistic traits, but that is a very slow process.
For instance, the J-man has severe oral sensory issues. They cause feeding issues (he was in feeding therapy for 18 months, and even now only eats the Sacred Six foods), speech issues (if you don't like the way your mouth feels when you make a certain sound, you don't make that sound!), and other issues. He has proprioceptive difficulties that make things like "heavy work," rocking, and swinging very appealing to him... but make things like being out in open spaces very scary.

I agree with the quotation "If you've seen one autistic person, you've seen one autistic person." That's why I was offering up my anecdata. I would HATE for mothers who didn't nurse to think they somehow "caused" their child's autism. It reminds me too much of the "refrigerator mother" thing. I think the J-man just hit the genetic jackpot with us - there are a LOT of variables in our family trees that studies think seem to lead to autism.

I don't know where the J-man would be considered on the spectrum. The school system (and we!) agree that he needs to be in a self-contained AU classroom... and even that, with its total of 8 kids can sometimes be overwhelming to him. He's so crazy smart, with such high level splinter skills, that sometimes we don't know what he will do next - cure cancer, or learn to say "J."

I don't believe in God... because the god that a lot of people believe in seems like such an asshole to me. So I can't really agree with Einstein there. I would say if there is such a being, it can be plain mean. And I'm not even talking about autism!

r.b. said...

I understand what you are saying. I guess, over the years, I've forgotten the extreme sensitivity and sense of guilt I had. It was like nobody understood, and I understand how you want to protect mothers now. In truth, I had forgotten. Somewhere along the way I have totally forgiven myself, and even if something I did or didn't do may have "caused" Ben's autism...I don't blame myself because I KNOW I did the best I could with the meager abilities I have. I am not perfect, and I don't need a perfect child. The one I have is perfect to me...he's totally human like his goofy-ass mother.

Yeah...about Einstein...atheists say he is one of them, theists insist he is too. We all want to claim him. He once said, everything is a miracle or nothing is, and I think the dude was just fascinated by the simple things. I hold that in common with him. My feelings of faith aren't important unless you ask me directly. I doubt that I would impress you either way.

Your son sounds so interesting. My son was labeled as "moderate" at age 3, and I was very frightened. Now at age 17, I am very intrigued. I don't know what the future holds for him. Like me, his adopted mother, in some things he is "scary smart". (HI, Hyper Aspie!) In other things, I, I hope you can survive in the real world, you seem kinda naive. The real world was a rude awakening for me, and I hate for him to suffer.

The sacred cream, french fries, chicken nuggets, salad, McDonald hamburgers, and...can't think of the other. Any of those sound familiar? That was Ben.

Still, as to the "if you've seen one" idea...Ben's developmental trajectory was more like one of a child with highly involved autism than it was like a "normal" childs. Yet, I'm sure he will go on to college. That, to me , is just weird, ya know? He had more in common with a "severely" autistic child than he did with a "normal" child. AND, as smart as he was, he was in special ed, speech, OT for 6 years (preschool to age 9), and in special ed classrooms PRN his total school career...all 11 years before we pulled him out to homeschool. Highschool is really hard on our kids as they can get "picked on" if they are in the regular classroom. Ben got called a "retard" a couple of times, like Temple Grandin, like John Robison, and he fought back, which we found encouraging. He had enough of sense of self to do so. But, like the other 2, it led to suspensions/being kicked out.

Oral sensory--Ben chewed on EVERYTHING for years. The bottom of his T-shirts were always wet
and stretched out.

And you know talking about sensory seems like therapy was
ALL ABOUT THAT, but when he got old enough to attend the regular classroom, that shit was out the door. Why??

Proprioceptive...horseback riding! Ben answered his first question following a theraputic riding lesson. We were so amazed how much parents took their childrens language for granted. The PT said it was "vestibular stimulation" and it encouraged language.

I don't like the asshole god either. Yet there is a joy in me, that I like personify as if it is a part of the universe. I don't know where it comes from, but I want somebody to thank.

You sound like you know your J pretty well, and that you do a fine job of loving him and giving him what he needs. NOBODY, except an asshole, can ask any more of you!!!

Thanks for giving me insight into you little J-man. He sounds a lot like Ben when he was younger, in some things.

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