Muse2NOPharaoh said:

Karen

I can't give you information about books or anything.. but if you have questions.. I'm more than happy to try to answer them...

noimageatall said:

the main thing i did was treat my daughter like a "normal" child... she has 2 older sisters so she knows what to be expected of her... she has tasks she has to do and obey by the rules... she gets 1 warning... sometimes U do have to look at what is going on in their surroundings if there is something in their behavior.. it could be from over stimulation so U have to adjust for that... potty training is a constant thing.. it took years and she still has issues with it at nite... make sure to not give liquids or foods after 7 depending on what time she goes to bed... use love for rewards but try not to coddle them from the world around them.. the more they are exposed they better they can adapt to the surroundings... every day is an adventure and take it step by step... its never a dull moment and there will be many rewards with every thing they accomplish ... my daughter floors me sometimes with the things that she comes up with.. her cognitive was her weakest area but that is getting better each day... she has the best memory and if you promise something she will not forget it and reminds U over and over it makes U slow down and think of the small things in life...

Stymie said:

No dear lady, you are awesome for living with this. Sadly, we arent villages anymore where the burden is lightened by sharing in human plights. Growing up the Italian boy 2 doors down had the worse combination of seizures ever. The whole neighborhood knew and all the kids and parents knew how to handle it should it occur. ( It did and often) So he could ride his bike and live life and his mom had a break. Its just not like that anymore. Often we are all an island unto ourselves.

Muse2NOPharaoh said:

HowComeYouDontCallme said:

Tim rocks

Marion you are wonderful and indeed Karma has returned and rewarded you for all you are, hug Tim and Abby for us both. See you soon

Goodness with all this time I had not read any of this and in truth, this is the most worthy kind of thread to truly read here, for me. I suppose because I work in a hospital, professionally interact with many children diagnosed with the many forms or levels of autism.

To all parents here.

But mostly, to Marion V. and her beautiful son Tim. Because she is truly one of my dearest world friends here. I love her dearly, this I know she knows. For this, I am more than grateful to grow and continue to grow in such friendship, due to the org... it continues to evolve, especially away from the org.

To all that you have shared of your world and your families world... I love you.

You are incredible and you always bring me to tears, in such beautifuls ways. You Marion, inspire me.

These stories and mentions here inspire me to know/feel there is so much love in this world, even through challenges.

FreeSpirit said:

OMG Julie... now you made ME cry.. You know I love you.. and words can't discribe what you mean to me.. Thank you for your friendship

mdiver said:

Hey PHIL!!!

I'll give the guys a hug from you both!!

And Congrats to you both Mr and Mrs. B!!!

chicagotribune.com

Against the stream
California-based organization advocates alternative measures to deal with autism
By Julie Deardorff

Tribune staff reporter

April 8, 2008





Nine-year-old Amanda DiFucci of Lake in the Hills isn't fully "recovered" from an autism-spectrum disorder, but her sensory problems have vanished, and she no longer hits herself in the head or suffers from severe eczema. When she's among her 3rd-grade classmates, it's hard to tell she was once diagnosed with autism.

"No one could suspect the living nightmare that held her captive," said her mother, Sara DiFucci, a co-coordinator of the Chicago chapter of Talk About Curing Autism (TACA), which provides resources for families with autism. "It still pains me to think of that time in her life."

Autism, the fastest-growing developmental disorder in the nation, strikes at least 1 in 150 children. It has no cure; stories of "recovered" children are the exception and fuel for a heated debate over how — and even whether — children should be treated.

But parents such as DiFucci, who have watched their children regress into autism (and then make stunning improvements after undergoing alternative and mainstream therapies) are promoting the controversial idea that autistic symptoms can be improved.



Diet changes
The force behind the fledgling recovery movement is California-based TACA, which burst onto the national scene after landing celebrity Jenny McCarthy as its spokeswoman. TACA arms parents with information on topics frequently rejected by mainstream doctors and dismissed by the American Academy of Pediatrics, such as starting a wheat- and dairy-free diet (also known as gluten- and casein-free) and using other "biomedical" approaches such as hyperbaric oxygen therapy, chelation to remove heavy metals, supplements, vitamins and minerals.

While autism generally is regarded as a genetic and neuro-developmental disorder, the "biomedical," or holistic, view sees it as a medical disease that affects the body's organs in addition to the brain. That means underlying medical problems that often accompany autism need to be treated, such as severe gastrointestinal distress, allergies or seizures.

A complete intervention plan, according to TACA, is like a three-legged stool; it includes biomedical treatments (including dietary changes), traditional one-on-one behavioral interventions (such as social skills and speech and occupational therapy) and strategies to keep the family healthy. TACA says that it isn't enough to try just one, that all three are critical.

"TACA is about changing paradigms so when families are told, 'There is nothing you can do,' we tell them the exact opposite," said founder Lisa Ackerman. "Each child's improvement or recovery is as complex as their diagnosis. But if parents trust their instincts and keep looking for answers unique to their child's needs, they can change the lifelong sentence of autism."

The American Academy of Pediatrics maintains that evidence is lacking for many popular interventions, such as chelation and the use of anti-fungals and anti-virals. It won't endorse any alternative therapies that don't have appropriate evidence.

But parents such as Springfield's Laura Cellini, whose 9-year-old son, Jonathan, regressed into autism between 12 and 18 months, say they have too much at stake to wait for randomized controlled trials. After losing his use of words, Jonathan began seemingly staring through people, banging his head, spinning, flapping his hands and throwing violent tantrums. The gluten-free, casein-free diet was one of the biggest factors in his improvement, Cellini insisted. Today he is a mainstreamed 3rd grader who can talk about how it felt to be non-verbal.

"He told me, 'I thought I was talking. I just couldn't understand why you guys couldn't hear me,' " Cellini said.

And for Trevor Kent, 13, after starting a gluten-free, casein-free diet, vitamins, chelation and hyperbaric oxygen therapy, most of his autistic symptoms seemed to vanish. Now a 6th grader, Kent plays soccer, the clarinet and piano, and loves books and animals. Autism, he said, is like having a growing pebble in your head, one that can make you feel "gloomy and sad."

"Every time I did the chelation, it felt like it exploded the 'boulder' in my head. It made me feel happier and focused."


No guarantees
Difucci warned that "biomedical intervention isn't guaranteed to work, nor is it easy to implement. But the payoff is enormous."

In Amanda's case, treatment consisted of 46 hours a week of traditional behavioral intervention — speech and occupational therapy — and at least 22 different biomedical treatments over several years. DiFucci said three of those showed "undeniable global gains" — chelation therapy, hyperbaric oxygen treatment and melatonin — but the mother urges "responsible hope" and cautions that parents must find their own way.

Parent mentors, something TACA facilitates, can help navigate the complex treatment path. Trevor Kent's "recovery," for example, was guided by Sonja Hintz, who said that her son Alex seems to have largely recovered from autism. Kent's mother, Janell, credits the dedication and generosity of other parents with saving Trevor from a lifelong disability.

"They understood how you can never accept that there is nothing you can do for your child," Janell said.

TACA-Illinois meets from 4 to 6 p.m. the second Saturday of every month at Macy's in Woodfield Mall, Schaumburg. An open house will be held Saturday. For more info, go to tacanow.org/illinois.



Copyright © 2008, Chicago Tribune

April's a busy month, because it's Sexual Assault Awareness Month as well.

Stymie said:

Thank you, Ivy.

We have done the wheat, dairy free diet. It certainly did help. Also everything she eats is organic and healthy. Tess did have many allergies, but doesn't anymore. I've been looking at all I can find about the hyperbaric oxygen treatment. It is very expensive from what I've read so far. But, my son is looking into it.

Thanks for the link to the group in Schaumburg.

No problem April.

http://www.reimerhbo.com/autism.htm

I realise this is technically Asperger Syndrome, but this book was a real eye-opener to me and a fantastic read.



As a result of this book and a little serendipity I am starting to look at possible causes for the increase in the diagnosis of Autism, Autistic-like disorders and ADDs. It is a slight aside to my normal research but it is a fascinating field.

There appears to be an association with nerve tissue development during gestation and the intake of maternal aspartame. I hope to publish the work later this year when I firm up my data.

All the very best to those living with and alongside the disorder.

PREDOMINANT said:

That book is awesome!!!

And thank you Steve.

A 13 year old autistic girl who has found a way to communicate:


http://www.ctv.ca/servlet...?hub=WFive

Follow-up story:

http://www.ctv.ca/servlet.../20080325/

luv4u said:

Hey, I posted about this wonderful girl on page one. I knew no one reads my posts.








Thanks for the update.

She wants to walk for autism like Stefan Marinoiu, whose son is autistic, and is walking from Toronto to Ottawa to raise awareness about autism.

Please watch and give if you can---Ivy


'Night of Too Many Stars' walking the line


-- Benefits on TV are rife with their own cliches: the busy phone banks in the background, the giant-sized checks, the drumrolls, the tote board. So when comedians gather to raise money for autism education this weekend, you can expect the event itself to be spoofed.


Jon Stewart will be hosting the second "Night of Too Many Stars" on Sunday night.

"Night of Too Many Stars: An Overbooked Benefit for Autism Education" promises to be a benefit -- and a parody of a benefit.

"If we can convince people we're just kidding, maybe they think they're giving us fake money," said Jon Stewart, who's reprising his role as host.

The live, two-hour Comedy Central special (8 p.m. EST Sunday) will raise money for schools and education programs for autistic children and adults, with some of the money going to the advocacy group Autism Speaks. The last "Night of Too Many Stars" in October 2006 raised more than $2.6 million.

Both have been spearheaded by Robert Smigel, best known for his character Triumph the Insult Comic Dog. Smigel, whose son Daniel is autistic, is well-known and respected among comedians, and it's his connections that drew glut of talent.

Will Ferrell, Adam Sandler, Steve Carell, Tina Fey, Conan O'Brien, Stephen Colbert, Sarah Silverman, Amy Poehler and many others will be performing standup, sketches and presenting short films at New York's Beacon Theater.

Striking the right balance of laughs and seriousness isn't easy -- particularly for a comedian as subversive as Smigel. (The "TV Funhouse" cartoons on "Saturday Night Live" are also his doing -- as are the moving lips of famous people's photos on O'Brien's "Late Night.")


"We want to be funny enough that they laugh, but not so funny that they don't think it's real," said Smigel. "We try to walk that line carefully. Yes, we really want people to call in and give real money and not ironically funny money."

Autism education clearly is a real issue for Smigel, who has had difficulty finding good schools for his son.

"It's bleak for a lot of parents," Smigel said. "As hard as it was to have our son diagnosed, it's even harder to imagine the frustration of parents who just can't get what they need for their child."

Stymie said:

thanks for the info about the show...i am sending it to a lot of my co-workers to watch and pass it on to their friends and family....

No problem. I'm gonna start writing letters to The Autism Society of America and other autism organizations because I have no idea if there are funds available to parents for treatment. Research is a great thing but what of the kids who are here now?

Stymie said:

i was thinking about that especially since i was looking at the cost for the hyperbaric chamber at the autuism center here in phoenix

http://www.center4autism....pyHBOT.asp

its not cheap but if its getting the kinda results they say its worth the shot at it.....

purplekisses said:

That caught my attention as well and I never heard about that until I read it on this very thread. It is the treatment I am most interested in.

illimack said:

Nevertheless, my statement still stands.

[Bait snip - luv4u]

truefunksoldier said:

Apparently not!

PREDOMINANT said:

I'd like better details to include in my why we should fund more research argument.

Muse2NOPharaoh said:

Yes, apparently Prince isn't the only nazi-like arbiter of free speech.

noimageatall said:

Angels

There are some natural treatments available for autism, ADD, ADHD, depression, etc.. Check out a book called "Gut and Psychology Syndrome" by Dr. Natasha Campbell-McBride. It deals with the role that nutrition plays in a lot of these diabilities.

noimageatall said:

She is adorable

I remember all the work i was involved in with pre-school kids with autism and i can see exactly what you are saying. It is very hard work but as with all children the effort is worth it so much.

This thing about dairy diets being one of the culprits in autism doesn't jive with me because Sweden, as a very good example since our diet is comparatively high, as a lower rate of autism diagnosis than many other countries do....unless... it's not the dairy but what comes with it! I wrote this to 2Freaky in an orgnote when he asked me why Sweden has a lower rate, I said I don't know but what I do know is that the rules in Sweden are a LOT more stringent when it comes to cattle and dairy cows and what's allowed in the feed/grazing - in the US gene manipulated crops are allowed, different ainsecticides/pesticides, antibiotics in the feed etc. Does anybody know anybody, or OF anybody, who's looked into this? I'd be very interested in knowing.

As people who have relatives who are autistic or people who've worked with them know, the trick is to know what to take "personally" and what not to - they do not try to piss you off, they're just singing a different tune.