The teacher's come...
Yesterday, I was wondering if there were examples of "aspies" and "auties" and "adders" and all...people who had never recieved any therapy at all.
Somehow it has lead me to this ring of sensible people.
Read this tale...I find it beyond fascinating. It's about an "aspergerian" who quietly passes as "normal". It's remniscent of being "in the closet", if you know what I mean...And the links are phenominal. It's going to take a while to peruse them. My hubby doesn't understand.
And this brilliant mother, who discovered, after leading a happy and successful life, that her son had a label (helpful teachers) and she probably would have had one, too, even though she skipped two grades. Having come from a family of "little professors", I wonder about myself...
This is not "Oh, poor little angels" type crap.
It's ADVOCACY for the atypical.
Something tells me that society has a big problem with people who are not sheep. Kind of a "dangerous minds" type of deal. I'm serious...There are lots of people who are supposed to just accept whatever kind of treatment society decides to bestow on them (blacks, gays, foreignors, poor, homeless, women, handicapped...). Lots of this mean-spiritedness comes about not because of evil outright, but because of ignorance and apathy. It's just easier to dismiss, or not to care...to turn a blind eye. So those marginalized get ticked and get uppity, and the "haves" try to silence them even more. It's DANGEROUS to threaten the status quo.
These people are stopping the madness that parades itself as love and caring. Opportunism...many people are getting names for themselves and their "snake oil cures", while abuse is deemed acceptable.
This website has to be a labor of extreme love, and the creator must know great peace knowing she is helping to change the world. But she's just a drop in the bucket against the advice of "professionals".
My mind is headed in a totally new direction. It's my heart that led me there.
Friday, March 31, 2006
Thursday, March 30, 2006
This is a question that has always been in my mind since the day I "accepted" the autism diagnosis.
There is no link, because in my googling, I could find no example of untreated autism. Only giant fears exposed.
"You've got to catch it early..."
"Untreated, institutionlization is likely..."
"Half of children untreated for autism are likely to never develop speech..."
Are we being "scared" into treating our children?
The day after I "accepted" Ben's diagnosis...I grew to hate him, in some ways. Everything that I saw as indicative of his "autistic tendencies" I attempted to rid him of by superior intellect. I'm not kidding when I say the day before I loved everything about this little buddha. The day of, it's like I went on a religious crusade. Ben was the very same kid he was the day before. I can't imagine that my anxiety and zealousness didn't affect his self esteem. Looking at someone's life under a microscope tends to do that.
I guess I'll never know. Maybe he will grow up to be a fine man in spite of me, not because of me.
Friday, March 24, 2006
First of all, I have to confess I am not a doctor. I just play one on the web...really. I've gotten myself into the PubMed archives by posing as Dr. R.B. Walker, researcher. I should really be ashamed...
The bad thing is, I've easily gone over 25,000 documents and research studies, looking for clues for Ben's "disability" and answers other than Ritalin, which I don't know why I hate so much. Anyhow, although I do have a background (minimal) in Science, I have no background in Medicine. So half the time, I am like a plumber at a rocket science convention.
I am telling you this, so you know in no way am I posing as a doctor here, just somebody who tells it like they see it, and ain't afraid to say so! So if you make any decisions based on this blog, don't say I didn't warn you...
Let me tell you what I know about Ritalin, and be warned I'm probably getting the particulars wrong, but this is what Ben's psychiatrist said 7 years ago. It was serendipity that it is even used at all for kids with behavior problems. At an institution in the 1930's, children were undergoing some type of brain scan or x-ray (a particular I'm not clear on) and were given a shot of a slightly poison substance that was necessary to the scan or x-ray. The doctors wanted to clear this substance out of the children as quickly as they could, so somebody came up with the brilliant idea of giving them amphetamines. Nothing was thought of it until the nurses at the institution realized that the kids were sitting still and paying attention, post amphetamine. So eventually somebody in Big Pharma puts two and two together, and they came up with Ritalin about 40 years ago. To this day, they will tell you "they don't know why it works".
Well, here is my take on it...mind you, it is only from personal observation (aka in my mind, the beginning of the scientific method...#1 form a hypothesis...). And I could be full of it or crazy, but then again, I'm not the scientist saying "I don't know why it works", if you get my drift.
When I first insistited Ben be put on Ritalin, he was looking into going into Kindergarten. It was a week before school started, and Ben's Educational Pre-School teachers ( in public schools with certified teachers for kids with disabilities) said Ben had a 50-50 chance of making it in "Regular" Kindergarten. His speech teacher's youngest son had been on Ritalin from grade 4 through grade 9, so far, and she felt it was like giving insulin to a diabetic. My husband read the contraindications on the packet, and was SURE I was trying to KILL BEN...But, we gave it to him anyway. Other than the first few days, it would be nearly a year and one-half before we saw how it affected him because we never gave it to him at home. Actually, the first time was on a weekend when we were getting ready to move and were going out on a goodbye dinner with some friends.
We thought, "Who IS this kid who sits so quietly and listens instead of squirming in his chair and blabbering a hundred miles an hour...." and actually, our hearts went out to him, as it was a little sad...He sure didn't seem like the Ben we knew. But he did seem like a "regular kid", not the Dennis the Menace kid we knew and loved.
Even with the Ritalin, Ben "stood out". He walked funny, he talked funny. He got upset real easily, his seemed more emotionally liable, and was a BEAR when he got home from school, when the Ritalin wore off. In first grade, I had to make the choice of giving Ben Ritalin on into the evening so he could do his homework with ease. We decided he had to learn to do it sometime, without the drugs...so we worked 2-4 hours a night trying to weasle a few lousy papers out of him. This was our nine month long fight for the next three years.
I just couldn't see giving Ritalin to him after school. He slept and ate too little as it was. So we duked it out 9 months of the year every evening, and our "quality of life" was nil. Ben hated school...and no wonder. Taking drugs to work 6 hours a day in school, and then come home to 2 to 4 or more hours of torture. I told the teachers, but they just couldn't wrap it around their heads that was too much for a little guy. It's what I like to call the "pull of the Almighty Gradebook". My husband and I were teachers...and guilty, too. No teacher is going to admit that homework might constitute abuse. There must be something wrong (psychologically, most probably) with the parent's, or especially, the kid. Just lazy, that's all....or crazy, or stupid.
By the fifth grade, when Ben had a teacher I swear must have had some ADD tendencies herself, or how could she be so understanding...I had made a choice of a different kind. I didn't give a hoot (I'm being nice) if Ben ever did his homework again. I didn't care if he flunked out of school...I wasn't doing the homework drill ever again. Ben was going to start pulling his own load and paying the price. What was I teaching him by watching over him like a bear, myself?
And you know what? That teacher (God bless you, Ms. Hunt) let Ben do his homework at his free time, at recess, whenever. He brought homework home about a total of 10 times all year. No need for long-acting amphetamines. Instead of fighting...we worked on our 'relationship' and did fun things or just relaxed and watched t.v. It was like were on VACATION!!!!!!!! I HOPE each of you finds a teacher who loves your child and wants what is best for them, above the "Almighty Gradebook". I will never in a million years be able to repay you, Ms. Hunt. Thanks...
Back to the Ritalin...
Things were going on as normal up until the possibility of the FDA insisting on a black-box warning label regarding the dangers of Ritalin. When I saw a little girls picture on t.v., and heard her heart broken parents saying "I wish we'd never thought that getting A's were more important than her life..." . You see, this little girl had died of long term Ritalin usage. I suppose some kids have an inherent genetic weakness that makes them unable to use Ritalin without heart damage. I was scared to death that Ben would see the news blurb on t.v. and be afraid we were trying to kill him so he could get A's in school. Or that he would be afraid for his life. Kids often think in funny ways, and will never let on to us. When he finally did see a news blurb about Ritalin, it had been toned down somewhat, no pictures of little girls who had died...
"You idiots! ADHD isn't a disability, it's a GIFT!" he says.
"Mom, those idiots are saying ADHD is a disability...don't they know it's a gift?"
Luckily, by this time, Ben was off the Ritalin. You see, God had lined this up when a woman I had talked years earlier became Ben's teacher-aide in his classroom. A friend who went to Ms. K's church had told me she was using all natural vitamins instead of Ritalin. So I had met her, and even gotten a tape from her about the protocol she was using. And here, right in Ben's classroom, was the same woman. She was someone who knew personally what I was going through. There is no advocate for us or our children like someone who has worn the same moccasins.
Within a week after hearing the news blurb about the dead little girls parent's heartache...Ben's doctor had prescribed a new drug...one that treated the "symptoms" of ADHD, and not the "behavior". But that is another whole story.
FINALLY, HERE IS WHAT NOVARTIS DOESN"T WANT YOU TO KNOW ABOUT RITALIN...
While on Ritalin...Ben got "A's", but his anxiety was increased by at least double. He was too afraid to talk to people, became paranoid, and if anybody laughed, he was sure they were laughing at him. He had few if any friends at school, and in the neighborhood, he would often get upset 5 or 10 minutes after going outside because somebody said or did something his "rigid personality" couldn't deal with and he would be indoors.
AFTER giving up the Ritalin...THANK YOU JESUS!...ahem...I mean, after trying something else...Ben's cooperation at school was not quite as good. But...he has a love life now, which I haven't heard the particulars on yet, but I know the teachers are all excited about it...He will spend up to two hours outside (and has come up with some very colorful language, even more colorful than what I've taught him...) ...He has the guts to ride the electric bike Grandpa bought him for Christmas, and he STICKS UP FOR HIMSELF!!!
I'm trying now to figure out how to tell the teachers who remember the sweet, scared little nerd that I am never going back to Ritalin. It makes him more cooperative, but maybe that's just not Ben. I haven't come up with a diplomatic way of saying "No way in hell I'm going back...", but I'm sure I will.
Wednesday, March 22, 2006
I used to think she was unfailingly kind, but as Ben grows up and is threatened with "You behave or you're going to have to walk home...I'm pulling over the car...clean your room if you want to go to the mall..." I mean, that ability to manipulate my child had to come from somewhere. And it's so cool, because if you stick to your guns it works every damn time! I'm not kidding! I actually did have to walk a few times when the desire to fight my brother or sister overcame my ability to self-advocate. Must have been worth it, I don't remember . And I know I missed trips to the mall, but not often. I used to think we were lazy, but I do remember being asked "please" to do things, and the guilt just drove us to do it. Ben is a hard worker, compared to other kids his age. That had to come from somewhere, too.
I mean, my God, my father worked 16 hour days and Mom was left feeding,clothing ,chauferring , and giving maid services to 10 thankless hellians. She had to get the upper hand, somehow. But I seldom remember her even raising her voice, and even less getting angry. The woman was brilliant...a Svengali!! It wan't in an evil or sinister way, but it was hypnosis, none the less. Somehow, you would rather die than break her heart.
Dad was a different story. He rewarded you for putting yourself out there. I think he liked "smart-ass" kids. As long as you knew when to quit. I think he was easily bored and looked to us for entertainment. And we all vied for center stage in our own way...and I think we still do! Making him laugh was the coup de grace! I think he worked so hard and was under so much stress, he needed it.
Dad always gave us Sundays. Rides around the lake, rodeo's, stock-car races, swimming at the lake, fishing , picnic's...Sunday was "Family Day" and other kids were never allowed to go along, because, well, who wants to babysit the neighbors kids for a whole day!? I remember those days as being so free and easy.
I never remember my parent's abusing, or even be-littling me. I'm not saying they never got angry with me, because neither of us were perfect. But I do know, when other kids wanted to run away from the rules and regulations of their homes...we didn't want to miss out on a good time! Except that one time my brother packed up his hobo bag and threatened to live at the river. He was gone and came back before he was missed...made me kind of sad because it was my fault he was running away...but we won't go into that!
You know, initially I tried to use the "Psychological" standards of our day to raise Ben. If I did everything right, he would never need a psychiatrist when he grew up...But it drove me crazy. Our children need, more than our self-righteous platitudes and "non-dysfunctional" family standards...our children need our unconditional love and more than anything...so much more than anything at all...they need to know that they bring us joy. Without that, you can kill a child's spirit, no matter what psychological method you use.
Thank you Mom and Dad. This is the letter I should have written years ago...
Love you lots....Rose
Tuesday, March 21, 2006
For your reading pleasure, I am sacrificing all the bottles of pills I have in the refrigerator. These are things that did not work for me. I would do research on the web, read the books, be convinced that HERE WAS THE ANSWER, mainly because Ben was on Ritalin to go to school. It was the only way I could keep him out of the special ed classroom, which probably was a good idea as he is a brilliant little kid. That's not my pride talking...because I tended to think he was a little "simple-minded" like his ma...but his 5th grade teacher said he was a very creative writer, his 6th grade teacher of Social Studies says she thinks he is gifted. He regularly comes home with 95's an 100's on his papers in all classes but math. Can you imagine if he had been allowed to dawdle in a classroom that wasn't academically oriented? Anyhow, I hated him being on Ritalin and would have cut off my right arm to avoid it if it was possible. Things have changed a little, we'll get into that at another time.
Now, I want you to know as I list these off, that they only amount to about one-third of what I've bought through the years. I go through a regular purge every 2-3 years so I can use the side door on the refrigerator and clear off the microwave. Following each item, I'll let you know the cost, and the purported and the true benefit of the product, if there was one. Now, they may work for you. But I figure I've been had. No wonder the health food marm smiles when I come in the door...but no more!!!! Some items I've never given to Ben, as I didn't like the way they made me feel. I am always the guiana pig~
1. Coromega --Omega -3 fish oil supplement-- Pharmaceutical grade fish oil. No fish oil burps. Ben liked it, and it made his hair shiny when he took it and his skin less dry. The doctor said it was safe enough to take daily. It cost $17 for 28 days, but you can get it cheaper wholesale online. It was a little too rich for my taste, and was not an answer to replace the "vitamin R" (Ritalin), but if I had the money, I might take it anyhow. Some studies show it is good for health, and...Ben's hair was SO SHINY!!!! I'm keeping what's left of this in the fridge...
2. Stresstabs high potency multivitamins. Remember the commercial about burning the candle at both ends? That was for stresstabs. I've found them easy to take, no stomach upset. I also "feel" better with the B-vitamins that are included in amounts multiply exceeding the daily recommended requirement, yet I'd imagine still "safe" levels. I came accross research that suggested thiamine was lacking in adult alcoholics, and supplementation decreased the desire to "fall off the wagon"... I tried it for me, and the first day I felt less anxiety. I continue to take them when I think about it, not necessarily daily, but often. I've found when Ben is taking a multivitamin, he is less likely to get sick. He is allergic to grass, and when he takes vitamins regularly, he doesn't get bacterial infections along with the allergies. I keep these on hand, always...on the microwave. You know what's weird? I can be taking them before I have my period, and I will _not get cramps_!!No need to double or triple my aspirin intake! I have no idea why this is, but it's interesting! Bernie Rimland also did lot of work on vitamin B6, which is also good for autism, and rated it highly. I'll go along with him there. Works for me, works for Ben.
3. Yohimbe-- Alpha2 agonist or antagonist, something like that. Look it up if you like. Dangerous...made me feel, for a few minutes, like my head was going to pop off. Used to help men keep boners (tee-hee). Thinking of saving it for my husband....not for kids. Cost is $14.99 for 100 tabs. Alpha 2 agonists (or antagonists...can never remember) like Guanfacine have been used "third-line" for kids with ADHD. Ben is currently off Ritalin and trying out the guanfacine or Tenex, and is coming out of his shell, but more on that later. Clonodine, Guanfacine and Yohimbe are all blood pressure meds, I think. Guanfacine (prescription) costs less than the yohimbe.
4. Houston Peptizyde. Never tried them, but paid $30 bucks for a bottle. A mother who was a chemist wrote a book about it. Even though I read the book, it took a while to sink in that it wasn't for us. Too labor intensive, too much cooperation from schools...I aint the fussy type. Figured if it was a "cure" or answer to my hatred of Ritalin, we'd find out eventually when Eli Lilly found out they could make money on it. In the trash.
5. Siberian Ginseng root. Look it up if you're curious. Supposed to increase blood flow to the brain. Never seemed to make any difference to me, didn't even try it on Ben. I'm throwing it away because my brother (the internist) took my mother off it when he found it was causing blood in her stool. Nobody needs black stools. Yuck...Trash...
7. GNC chewable vitamin C 300. Gee-awd, this stuff gives new meaning to the word sour...your kids will probably love it, but I'm too old for this. PS--I ain't putting it down...my mother worshipped Linus Pauling, but....
8. New Life Colostrum from Symbiotics. Should be from scavenger.com. Milk that New Zealand pasture fed cows (as opposed to good old Nebraska corn-fed cows) give to their newly born calves. It is the "first milk", supposedly full of goodies. I have to quit using google for answers. I think it was $30 bucks. That must be the amount an idiot will pay for a months worth of goods. "Gee, only $1 a day. That's the least I can do to help my son." But you never think of multiplying it by 20-30 other useless bottles of crap. We could have gone to Disneyland!!!!!
The beCALM'D is starting to give me a stomach ache.....
9. Natures Plus Herbal Active ImmunActin ZINC LOZENGES--Natural Organics Inc.--Maybe I should keep these. Pub-Med shows ADHD kids low in zinc. Besides, they only contain 10 mg Zinc and they taste good. I'll put them on the "maybe shelf" by the computer with the crackers.
10. GNC Biotin 600. I came across a most interesting cause of epilepsy among babies in PubMed. Something like a "biotinadase defiency" which can be totally alleviated by supplementing Biotin. Wasn't our problem, but how cool is that?? Trash...
The computer is starting to make funny sounds, so I'm going to publish and get back to you. This is taking far long than I thought!!!!!
Thursday, March 16, 2006
Most of the posts are a little bit whiny, right up my alley; but here is this one labelled "What it feels like to be a kid with ADD". Hit the link in the title and enjoy a peek into your child's mind. And then look around the website, radioessays.com, and get a feel for what the creative side of ADD can do...
Thanks to Ms. Janis for allowing me to link to her page!
Wednesday, March 15, 2006
Many things can lead to neurosis, and it can be a healthy reaction to uncommon stress. It beats suicide...
Gabor Mate is an interesting character. A doctor and a writer, he was asked to write a column on ADHD. He realized that it explained his life. While looking for the reasons why...He formulated an opinion that it took two things: there must be an innate sensitivity, and to blossom into full blown ADHD...There must be a misfiring between the child's needs, which tend to be above normal ; and the parent or caregiver's ability to give in to those needs of the child.
If you want no part of the blame, don't read his book. It will make you feel GUILTY. If you are Catholic or Jewish, go ahead, as you are used to it.
His own mother was alone, his father a victim of the Nazi's; she had to make the difficult decision to send him away to save his life. That's not neurosis, that's survival instinct, which neurosis probably is in a lot of cases. This was imprinted on the next generation, as 2 of the 3 of his children were also ADHD, I believe. He had fought with them and made their lives miserable before he finally realized the most important thing : our children need to develop as humans.
"From the very beginning," Gabor MatÃ© says, "the idea of ADD being some sort of genetic disease failed to make sense to me. There is biology involved and in many cases medications may help, but there is far more to ADD than heredity, and far more to its treatment than pharmacology. I wrote Scattered to explore the roots of ADD in life experience, and to investigate how we can help children and adults develop beyond the impairments ADD imposes. The long term objective is not just symptom control or even behavior control, but development."
Dr. Mate's web-page can be found here : http://www.scatteredminds.com/drmate.htm
I have done volumes of research. In the first year, I read more books (on autism) than I had read in my entire life total! This was a Ma set on finding answers. In my own "little professor" way, I looked for my intellect to guide me rather than my heart.
Like it or not, your total unconditional acceptance will do more to help your child, I believe, than any amount of expensive therapy. You DO have to work with your child, like you would if you had a physically handicapped child... But these little guys and gals are very sensitive to your feelings, believe it or not. If you are a basket case, mourning the "death" of your idea of a perfect child...I mean, imagine someone wanting to have a perfect spouse, and then they got YOU, and felt they had to spend all their time and money trying to change you into the perfect spouse...How do you suppose you would feel? Before you had your nervous breakdown, wouldn't you say, "Aw, who gives a hoot...You can take your ideas and put them where the sun don't shine, buddy!" But our kids don't have that choice. They are stuck with us, and as much as they depend on us to love them unconditionally, how can we let them down? Unless, of course, our needs are more important than theirs...
So...Grow up! You're stuck with each other, and the sooner you learn to accept it, and ENJOY it...The sooner you can get on with your real life. And you will be surprised at the monumental gains your child will make when you stop looking at him like a freak and start loving him as a child. No amount of therapy is going to make your child perfect, so get over it...Or the amount of therapy they will have as adults to try and replace you with their idea of a perfect mother or father is going to cost you BOTH emotionally and financially, since they have been told for years they are incapable...
Sorry...Didn't mean to hurt you precious feelings....
Uhm...Maybe I need to chill a little.
So anyways...Gilbert Keith Chesterton is the patron saint of this blog. That's with a small "s", as he doesn't get a holy card. Maybe I'll make one for you to download, not sanctioned by the Catholic Church, mind you, so no Mafioso types need to show up at the door. Back from that tangent...G.K. Chesterton grew up in England and at age 9 was taken to a "brain doctor" because, I guess, he was "different"...as big a sin in those days as it is today. He was the slowest child in his class, and refered to education as " the period during which I was being instructed by somebody I did not know, about something I did not want to know. " Sounds like a recipe for ADHD today!! In high school, he and some friends developed an underground newspaper. When the administration finally caught up with them, a teacher recognized Chesterton's formidable talent, and he went on to become a formidable writer in the early part of the twentienth century.
Gilbert Keith Chesterton is also the patron saint (with a small "s") of my son Ben, to show it pays to be "different". But Ben is going to be a famous inventor, something he has been recognized for since 1st grade.
So don't cry for me, APA!
(_Autobiography_, by G.K. Chesterton and many of his other works can be found at http://www.dur.ac.uk/martin.ward/gkc/books/ for NO CHARGE!!!)
Spell-check says I am okay, so this post is outta here!!!!!
Happy is the man who finds wisdom,
And the man who gains understanding;
For her proceeds are better than the profits of silver,
And her gain than fine gold.
She is more precious than rubies
And all the things you may desire cannot compare with her.
Length of days is in her right hand,
In her left hand, riches and honor.
Her ways are ways of pleasantness,
And all her paths are peace.
She is a tree of life to those who take hold of her,
And happy are all who retain her.