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, apples...to 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 trajectory....so 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.

Saturday, April 23, 2011

Mhh-mhh-mhhn....Makes ya wonder...Is it in the milk???

Is it infant formula that  causes autism, or is it something in the breast milk that fights the weakening of the immune system.?


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1578554/?tool=pubmed

AbstractBackground


Although Autistic Disorder is associated with several congenital conditions, the cause for most cases is unknown. The present study was undertaken to determine whether breastfeeding or the use of infant formula supplemented with docosahexaenoic acid and arachidonic acid is associated with Autistic Disorder. The hypothesis is that breastfeeding and use of infant formula supplemented with docosahexaenoic acid/arachidonic acid are protective for Autistic Disorder.Methods

This is a case-control study using data from the Autism Internet Research Survey, an online parental survey conducted from February to April 2005 with results for 861 children with Autistic Disorder and 123 control children. The analyses were performed using logistic regression.Results

Absence of breastfeeding when compared to breastfeeding for more than six months was significantly associated with an increase in the odds of having autistic disorder when all cases were considered (OR 2.48, 95% CI 1.42, 4.35) and after limiting cases to children with regression in development (OR 1.95, 95% CI 1.01, 3.78). Use of infant formula without docosahexaenoic acid and arachidonic acid supplementation versus exclusive breastfeeding was associated with a significant increase in the odds of autistic disorder when all cases were considered (OR 4.41, 95% CI 1.24, 15.7) and after limiting cases to children with regression in development (OR 12.96, 95% CI 1.27, 132).Conclusion

The results of this preliminary study indicate that children who were not breastfed or were fed infant formula without docosahexaenoic acid/arachidonic acid supplementation were significantly more likely to have autistic disorder.
 
http://www.jlr.org/content/48/3/513.long
 
Lipid Res. 2007 Mar;48(3):513-7. Epub 2006 Dec 21.


Docosahexaenoic acid and arachidonic acid are fundamental supplements for the induction of neuronal differentiation.

Kan I, Melamed E, Offen D, Green P.

SourceLaboratory of Neurosciences, Felsenstein Medical Research Center, Beilinson Campus, Sackler School of Medicine, Tel Aviv University, Petah Tiqwa 49100, Israel.



Abstract

Cell replacement therapy is being investigated for the treatment of neurodegenerative disorders. Adult autologous bone marrow-derived mesenchymal stem cells (MSCs) have been induced to differentiate into neuron-like cells harboring a variety of neuronal markers and transcription factors. Neural tissue characteristically contains high proportions of docosahexaenoic acid (DHA) and arachidonic acid (AA). In this study, evaluation of the fatty acid profile of differentiated neuron-like cells revealed a very low level of DHA, similar to that in MSCs but different from typical neurons. Supplementation of the medium with DHA alone resulted in increased levels of DHA but concomitant low levels of AA. However, supplementation with both DHA and AA yielded a fatty acid profile resembling that of neural tissue. It also resulted in enhanced outgrowth of neurite-like processes, hallmarks of neuronal differentiation. These findings demonstrate the essentiality of DHA and AA supplementation in the process of induced neuronal differentiation and have important implications for the development of cell replacement strategies of neural repair.



PMID:17185746[PubMed - indexed for MEDLINE]

 
 
Some mothers feel their children's autism did not fully express itself until after they quit breast feeding
 
I wouldn't be here today, with these outlandish thoughts, but for a woman who is doing  quite an interesting series on autism and evolutionary psychiatry in a  Psychology Today blog.  Her name is Dr. Emily Deans. This is her blog

Thursday, April 21, 2011

G.K. Chesterton on the Tyranny of Science

G.K. Chesterton on the Tyranny of Science


Eugenics and Other Evils, by G.K. Chesterton (Cassell : 1922), p.76-77.
The thing that really is trying to tyrannise through government is Science. The thing that really does use the secular arm is Science. And the creed that really is levying tithes and capturing schools, the creed that really is enforced by fine and imprisonment, the creed that really is proclaimed not in sermons but in statutes, and spread not by pilgrims but by policemen — that creed is the great but disputed system of thought which began with Evolution and has ended in Eugenics. Materialism is really our established Church; for the Government will really help it to persecute its heretics. Vaccination, in its hundred years of experiment, has been disputed almost as much as baptism in its approximate two thousand. But it seems quite natural to our politicians to enforce vaccination; and it would seem to them madness to enforce baptism.
Who would guess the high priest of paradox had an opinion almost 100 years ago on vaccinations?  Science believes it holds all that is pure and good and holy.  It has made a religion of itself. Navel gazing has led to it's inability to see that it holds few answers, and receives fewer accolades among the common man.  It can tell you what doesn't work, but not what does. It is like a brilliant child who cannot feed himself...his brilliance is for naught. It dies without being fed by the illusion of superiority.  Like the shamans of old, it's power comes purely from perception.  Like medicine before the discovery of germs...it will look back upon these days as days of ignorance, but in this day, "we are brilliant!"
It is a petulant child who refuses to say, "I don't know."
 True Science--click to see cartoon.

Tuesday, April 19, 2011

When WON'T a nypical look you in the eye?

Just got done reading Be Different by John Elder Robison.  Interesting stuff.  Although I needed to listen to Dr. Temple Grandin in the beginning, to have faith that just because you're different doesn't make you worthless...Robison's book tells me just because you're different doesn't mean you can't outsmart your detractors.  He found a way to succeed because of his differences, not in spite of them.

Anyhow, I read the book, and I like the word "nypicals" because it is amusing.  Kinda deragotory in a way...like "don't take yourselves so seriously", just because you can see the splinter in someone else eye, and not the log in your own.  Nypicals tend to be hypocrites, but cannot see it. They are blind to their own disabilities.

Something about this book helped me see the hypocrisy in nypicals.  I started observing them in the same way I used to feel observed by them.  And you know what?  They really are amusing.  They take themselves SO SERIOUSLY, all the while attempting to be Aspergerian-lite. An Aspergerian-lite is anyone who sees themselves as an authority on anything. Then they go all Sheldon (ala Big Bang) on you, like YOU are the idiot.  Good stuff.



So, when will a nypical not stare at your eyeballs? 

When they are pissed.  When they want you to disappear from their world.  When you don't exist to them.  The same reason our kids use.  They find us odious manipulators.  Nypicals find us odious people not able to be manipulated.  Makes you want to make SURE you make eye contact with them, for once.  Tit for tat.

Aint life grand?




Wednesday, April 13, 2011

A Picture Is Worth a Thousand Words.

Last Saturday, Ben and his Daddy moved a steam engine off a truck and onto the rails.  Ben's Daddy is taking the pictures, Ben is wearing the blue hard-hat..  I always kinda wondered, but in Ben's teen years, his father has become the greatest Dad in the world!  He "gets" Ben.  He didn' take Ben hunting, he wasn't a scout leader (for long), isn't rich enough to buy a railroad, but he knows what this young man needs.  He needs someone to believe in him.

Love is a verb, not a feeling.  Feelings are easy, love is hard. Kinda like moving a steam engine. But very rewarding...

Monday, April 04, 2011

A day with Ben

A day with Ben:




My son is my friend. I don't have to go about changing him. He's, well, he's very funny in my eyes. I'm about half-blind, though.

We go out for pizza. The table has butcher paper and crayons. Ben draws out some emoticons he's become familiar with. I crack up. The bartender thinks I'm drunk. I'm not...yet...She makes a damn fine margarita, though, strait up on the rocks.

XD


--laughing





>8|


-- pissed





D8<


--G.D. It! (look from right to left)





D:<


--Angry nerd (R to L again)





D:>


---Oh dear God! (R to L)





We are easily amused. It's a gift, I guess.


Somebody you let down your guard enough to laugh with, becomes your friend forever. Why is that?

I'm tired

I get tired of thinking all autism all the time.  I'm weary of trying to wrap my mind around all things autistic and trying to understand.  I've heard the "unexamined life is not worth living.", but all this belly-gazing is making me tired.

For some, it is just a different way of thinking.  For others, it is a profound impairment.  For my son, I think it is a learning disability.  My teaching background bears witness to that. Man alive does that kid learn differently.  It's fun to come up with something that works. He wasn't school material...as bright as he is.  But a part of me doesn't want to think of him as autisitc.  I want to think of him as Ben.

I gave it the good fight, did everything within my energy and means to help Ben..  Now, I'm just coasting.  Like every parent,  I hope for the best for my son.  I worry he'll get into trouble and have to pay a cost, like jail.  I worry he won't find friends to make life worth living.  I worry he will find friends and be as wild as his mama.  I worry he won't be able to make a living and have to spend the rest of his life living with his parents.  I worry he WILL, and he'll move out, and I won't be able to protect him anymore.

He is very sweet overall, but he's a little hot-headed.  I worry he's too sweet, I worry he's too hot headed.

When Ben first came home, I worried he would die...really...what's that thing...Sudden Infant Death Syndrome.  I worried he would quit breathing and I wouldn't be there to shake him into conciousness.  I had to give him to the angels so I could sleep.

I worry I'm too neurotic, and he'll suffer as an adult and live in the psychiatrists office. I worry I'm too lax, and didn't give him the right stuff and he'll grow up and be cruel and viscious.  I worry I gave him too much of the catholic sense of guilt, and he'll not take chances, or allow others to walk all over him. I worry he'll be poor.  I don't worry if he'll be rich...it's damn nice not to have to worry where you're next meal is going to come from.

Well, anyhow...I'm tired.



Sunday, April 03, 2011

autisitic speaks: Paging Dr. codeman38

Dr. codeman38, autism expert.  Enuf said.

Saturday, April 02, 2011

Autism Understanding and AcceptanceOpen Letter to the World

Autism Understanding and AcceptanceOpen Letter to the World




We (The Autism Community) need for you to know what Autism is.



We can only achieve that through Autism Understanding and Acceptance.



Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.



This is a call out to the world to understand the people and the disorder.



This is a call out to the world to accept the people and the disorder.



You can not understand or accept the people until you understand and accept the Autism they have.



Autism is a part of who they are.



The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.



Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.



The charities, the organizations, the groups, the parents, the people with Autism themselves... we ask you... no, we need you to know what Autism really is.



Today, we ask for your Autism Understanding and Acceptance.



This is what Autism is to me...
 
Autism was a horrible label that made me lose faith in my child.  Now, autism is a group of wonderful, brilliant people whose hearts go out to those who are having a bit of a tough time in life, like they are. Autism is a right-brained way of looking at the world, where thoughts/perceptions preceed language, and where over-bearing sensory stimulation, lack of understanding,  and emotional liability can make finding one's way a constant battle. Autism is also a way of being that sensitizes one to the world so profoundly that it can feel unbearable to live. Autism is a way of being very, very human, even if you feel like an anthropologist from Mars.
 
The greatest gift autism gives a person is empathy.  Figure that one out!  You will never believe it, unless you look at things differently!!! 
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