Monday, January 29, 2007

The View on ABC Featured Autism on today's show!

For years I've waited for mass media to put together a show that discusses the spectrum of those on the spectrum. For years I've waited for mass media to talk about ABA and other viable treatment options. Today, was finally it.

Why do I care so much about what the American public hears? Because it affects our daily lives, advocacy, funding, awareness, and the quality of life of our children. Our only chance to reach Johny Public is with a show like this. So what if the info isn't perfect or incomplete? Honestly, how long did it take a family member to get their head around this thing called Autism?

So here's a shot out to the ABC people, singer Toni Braxton, and Rosie, for putting together a great informative show that I am certain will help many families pick up the phone, answer questions, find hope, or get motivated. I cried thinking about thousands of moms sitting on their couch all over the country with light bulbs going off. For me, listening to Toni Braxton (a newbie that found out just 4 months ago), brought me RIGHT back to those early days with the knowledge about Leo. Seeing her cry and shake felt reminded me about those early days of having no clue about Autism, what it was, what it meant for our family. I'll never forget how it felt, and I don't wish those feelings on anyone.

Of course, no show can be perfect - Autism to too diverse for a tall order like that, especially in one hour. Remember, it's for the typical woman 25-54 demographic that has little or no information about Autism. Many will criticise symantecs. Many will complain that a therapy they hold dear to their heart wasn't mentioned. Many will cry out that a certain therapy was mentioned, or that early intervention didn't help their child.

I say, shove all your "stuff" aside and celebrate.

Autism was discussed for one full hour. One can tell that ABC tried their best to find ASD adults, families, and children that have varied "parking spots" on the spectrum. One can tell that ABC tried their best to stress just a few points (simplify) that say the same thing - Autism is treatable, early intervention is key, what the signs are, and that Autism is also a gift. A parent can maximize potential in their child. Rosie seemed quite passionate about our children and seemed to have a personal connection (just my California vibe working its magic). Maybe a close friend of hers has a child on the spectrum?

For years, I've regularly emailed Oprah's website asking for her to do a show on Autism. FRUSTRATING! For a while, I got hopeful since she seemed affiliated with an Autism organization and seemed *close* to working on a show about it. I know she's busy with child molestors and the education crisis in our country. One chick just can't do everything! And I'm certainly grateful for what she's done for our country just by presenting so many other issues on her show...

The play-by-play of the show isn't posted just yet, but here's the link to the show's guests and sponsors:

Thursday, January 25, 2007

Lee Silsby, Another Supplement Resource

Lee Silsby is another choice when shopping for ASD supplements (like Kirkman). FYI

Wednesday, January 24, 2007

Dr. Julie Buckley of Fl - Another Recovery Story

Recovering From Autism: A Local Doctor Says It's Possible

By Patricia Crosby for First Coast News.

Jacksonville, FL - When Dr. Julie Buckley talks about autism and
recovery, it's more than just her life's work, it's personal. Dr. Buckley's
8 1/2 year old daughter Dani was diagnosed as profoundly autistic at the age
of 4.
"I think the thing that will always haunt me, was the waking up in the
morning, the crying and the moaning. As a mom, all I wanted to do was it
make it better," says Dr. Buckley.
And, as a pediatrician Dr. Buckley found a way to make Dani better.
Through research and contacts she learned about DAN which stands for Defeat
Autism Now. She delved back into her medical books and is now one of four
leading DAN doctors in Florida, treating more than 600 children with autism
locally and around the world.
After a few years of using the DAN approach Dani is now considered
gifted in her third grade class. "Her recovery was pretty dramatic, but for
each child recovery happens at a different pace," says Dr. Buckley. "All of
my patients are either in recovery or are recovering, and all are feeling
better," she says.
Amazingly, Dani remembers the time when she couldn't communicate. She
says, "The words just wouldn't come out, they just wouldn't come out. And, I
was pretty much acting up and stuff."
She goes on to say, "Back then, it was very difficult for me to make
friends, now I can make friends. I like to draw, I like neo-pets which is a
virtual pet website." says Dani.
Dani also dreams of being a doctor like her mom one day. And, she has
a dream for other children like her. "Keep on hoping that there one day may
be a cure, so everyone will be the same and no one will call them names,"
says Dani.
With the DAN approach, Dr. Buckley treats her patients with a
combination of enzymes, vitamins, supplements, hyperbarics, physical
therapy, and occupational therapy.
Looking back, Dr. Buckley believes what happened to their family is a
blessing since it encouraged her to look for answers to autism.
"Many parents when they get the diagnosis of autism, they are
devastated. They then get the therapy, and eventually plan for a group home.
That's not what I signed up for. I signed up for the wedding, the
grandchildren, and that's what I want for everybody," says Dr. Buckley.
Autism is a neurological disorder that makes it difficult to socialize
and function in society. Right now, there are about 1 1/2 million people
living with autism in America.
If you'd like to learn more about the DAN approach to treating autism,
there is a DAN conference scheduled for Jan. 27 & 28th at the Florida
Community College in the Times Union Center for the Performing Arts. Just
call 1-866-208-0207 or go to

This is a good reminder that our kids can make dramatic gains. It's also a reminder that there are so many "environmental" kids out there that respond very well to biomedical intervention. I could relate to this mom/doc in that her focus was "to make it better". My focus had always been and continues to be Leo's happiness, along with his mental and physical well being. And that goes for his typical sister too.

Thursday, January 04, 2007

Autism Speaks' Alison Singer on the word Cure

Alison Singer of Autism Speaks wrote a thought provoking article that's posted on their site. Click here for full article and more articles on the word 'cure'. Ami Klin of Yale has an excellent post here as well.

As always, I'm always interested on the topic of Autism factions. I have such disdain for fighting within the factions, and feel strongly that we must continue to find ways to understand other parts of the spectrum and above all, respect fellow ASD parents and their children. Ms. Singer is an Autism parent. So in my book, she has my mine! Here is a part of the article that rings true for me:

'Her (daughter's) pain is heartbreaking and I pray every day for a cure. I do not use the word cure to insult other people on the spectrum. I use it because it accurately conveys my hope that one day, her constant struggles will end and she will know a different, pain-free life.

Use of the word cure holds particular meaning to parents whose children suffer regressive autism. These parents I often feel suffer the most, as they had a glimpse of their children before autism. These parents seek a cure because they remember the child they had and want him back. (regressive autism)

Autism Speaks' constituency tends to be dominated by parents of lower functioning children because many parents of children who are diagnosed as high functioning enough to be mainstreamed do not want to be associated with autism because of the stigma that is still attached to the disorder and for fear that their children will suffer from the label. Thus, our community does tend to be dominated by the faction of parents in search of a cure.'

It's true for us. When I first read this, I felt ashamed. Why am I not out there pounding the pavement in the name of the HF mainstreamed child? True, if I existed in just my little faction, I could say we are very undersupported in the funding department. I agree wholeheartedly! But, let me see...Oh right, I can't go down to NBC and march around making noise, advocating for "our" piece of funding that would affect a child that is more like Leo than not. Children that have a parking spot close to Leo's, that is mainstreamed and/or recovered, has little/no supports, and his label hidden. If I did, this would jeopardize Leo's life. How do I know this? Because I see discrimination all the time at school. It makes me crazy that we are still here in this place, treading water. Leo and many other children must stay anonymous (keep their label a secret) so they can lead a life without discrimination and the negative stigma that prevails STILL.

Indeed, I agree with Ms. Singer in that the Spectrum is indeed wide, and that there is a lot of confusion with semantics. I can see she loves her child and wants the disabling aspects of Autism aggressively addressed. Like most of us! However, we part ways when it comes dividing the Spectrum. There was, at least years ago, talk that ADD, ADHD, and NVLD would join the Spectrum, with "processing deficits" being the glue. Keeping the spectrum a spectrum makes sense to me. The more we pigeon hole the less we'll be focusing on each individual. We raise the risk of parents losing their choices in therapy options. Insurance companies, the government, and pharmaceutical companies will delay or prevent a potential viable treatment option from being attempted. Now THAT'S heart wrenching!

Each person with ASD has their own special blend, courtesy of genes and environmental factors. A special blend of ASD that requires a special blend of intervention that's designed just for them. While our kids may function on different parts of the Autism spectrum, what unites us all is the love we feel for them, and the deepest desire in every parent that their child can enter adulthood equipped with skills to succeed in life (whatever that means for them!)

Wednesday, January 03, 2007

That Casio Piano Keyboard

On a previous post I referenced my new precious piano keyboard. So now I'm going to elaborate...

I know I'm promoting a stereotype, but at least it's a positive one. The talent for music. Many ASD children and adults have a gift for playing musical instruments. Their unique wiring often puts them at an advantage at interpreting, integrating, and understanding the many fragments, the components of music separately as well as a whole together. Ah, music, the universal language, and a beautiful one.

The irony is that we focus on the opposite in therapies. We teach them to look at "the whole" rather than the parts of things, social situations, people, etc. Happily, so far Leo appears to be a candidate to having this "splinter skill". Also, my natural mother had an "ear" for music, so who knows. I don't have contact with her, so I'll never know how her piano days came to fruition. I have an ear for it as well (no surprise), and can often pick up a tune on the basic level.

I always dreamed of having having a baby grand piano in my living room once I became an adult that owned my home. That was pretty much it concerning dreams for me. I didn't have a good childhood at all (none), so my focus was always concerning survival. I didn't even think I would ever get married, let alone have children. No dreams of a white dress.

So here I was this fall, at 41 revisiting a joy of mine as a child, the piano. This was going to be the year that Santa brought us something big and expensive (that wasn't in an ABA drill book or came from a HFS). I looked into pianos for about a month - new, used, uprights were for sure. And the starting price appeared to be around $3,500. This led me to exploring the unspeakable. The horror of a keyboard. I'm such a snob. Could my hands tolerate plastic aweful synthetic keys? Indeed!

I realized my brother had a keyboard that he purchased recently this summer, and I played it and loved it. Apparently, there is new technology that makes the feel "seem" piano-like. The PX110 has a Scaled Hammer Action Keyboard for authentic grand piano feel Lower notes play relatively heavier than higher notes, just like the keys on a grand piano. It's true.

Of course, it's not the ever so-un-PC ivory keys of my childhood, but it was pleasant enough to be tolerable long term. And, this keyboard has all the octives (88 keys), a deal-breaker for me (if it was shorter). So Santa came through for approximately $500 including shipping. And the whole family is happy!

So I definitely recommend this to fellow ASD families and beyond!

Tuesday, January 02, 2007

Leo's Bunk

Leo shares his room with Sydney, his 5 1/2 year old sister. He's got the top, she's got the bottom. Sports photos, stickers, family pictures, army men, flash light, lots of books and stuffed animals, and many other treasures, as many that can fit at one time on his one narrow shelf. He still prefers his Starry Night to look at on the ceiling. It's old, torn, and stained, but who cares? He and Syd talk a lot, for about 30 minutes before we call "lights out", when in theory they shut off their flashlights that they read with. Sometimes they fight, she kicks the bottom of his bed, he sticks he feet down into her space, or he just shakes the bunk. They certainly know how to push each other's buttons!

The Alphabet, One of Leo's First Obsessions

Now that I've figured out the picture situation on the new blogger, I thought I'd post a pic of the rug in Leo and Sydney's room. This was the catalyst for Leo's intitial interest in the alphabet. Boy, I still remember thinking...boy, is HE smart! I still think that, but now I know why...our guys typically enjoy things that don't change such as the alphabet. As Fred Volkmar once explained, an A is always an A. There's nothing to interpret, to figure out.

Monday, January 01, 2007

Is Rudolph Real?

So we've had quite a Zen holiday. Usually, we go to California for holiday break. This means I must SSS (shop, ship, and stress) a couple weeks earlier. We also do Hanuka. House-sitters, mild climate clothing, and other logistics are a must but worth it. Last year Leo asked "Why don't we ever have Christmas in OUR house?" So I jumped on it.

Leo had begun questioning the validity of Santa just after his birthday (he received a globe and because he's a visual learner, he really "got" the concept of earth's rotation and our place in the solar system). Out of the blue, he states, "Hey Mom, I still believe in Santa, but I don't believe in Rudolph." Off I went with an Academy performance, chalking everying up to magic. He looked wearily at me, uncertain, but didn't bring it up again until about a week before the big day. Looking at me across the breakfast table, eating cereal (natch, GFCF organic), he says "Hey Mom, I think I know what I want to ask Santa for." Of course I'm thinking about all the gifts already purchased. I asked what, and he said "I want two things, first a real baseball bat made of wood that real players use. And second, a picture of the real Rudolph." He stares at me intently for my reaction, almost challenging me. I didn't know what to do! But then I began a story about how the real Rudolph's photograph is top secret, no one has seen him, just like the actual location of Santa's home and workshop. I told Leo he could ask, but Santa may say no. He seemed to buy it, mostly.

Leo had apparently taken notice of my several conversations about pianos, as Santa brought us a Casio-Key-Privia-Digital-Piano. Right after he woke up Christmas morning, he quickly ran back upstairs to tell me that Santa brought ME a piano, when in fact it was for them! Of course they couldn't care less about it, until two days later they became infatuated with all the sounds and the Bastian piano lesson guide. Now they both fight over the piano! And of course this is just the first week, so we'll see! And to my delight, Leo seems to have that ASD skill, an "ear" for music.

Surprisingly, we didn't miss CA as much as anticipated. Of course I spent about 4 hours on the phone Christmas day, and did have feelings of regret, but they were brief and infrequent. A week at home with just the 4 of us, well, it was unprecedented.

During the holidays, I take advantage of the time home (or at my sister's in CA)to do an annual detox for Leo. Because of his impaired GI and immune system, Leo cannot regulate organic and inorganic substances on his own efficiently, common with ASD, Down Syndrome, and other neurological disorders. Because of this, substances build up and eventually have a behavioral effect on Leo (spaciness, lack of focus, stims come back, lethargy, lack of curiousity). The test of time (4 years) has demonstrated that an annual detox helps minimize toxic load and build-up from the past year. And sure enough, Leo's dark circles have returned under his eyes (mild, but I can tell), the rigidity and focus on his preferred activities (football, soccer)has returned.

Leo is definitely an environmental kid (genes too, but), and this time of year we are reminded when these symptoms appear that yes, he has Autism, and yes, we must help him the best we can so he can feel his best. There are many days that go by that aren't Autism days. Just days with Leo, his uniqueness and all.

This time around, I'm attempting a different homeopathic protocol, and in total this should take about 3 months. I'm also doing this protocol right along with him so I can feel what he feels as much as a different person can. I also need this detox as well. We're aiming to go slowly with Leo so he would feel mostly well the entire time, and thus not affect regular life and school. As always with detox, there is a regression, a time where you really don't feel well since toxins are coming out of the tissues and organs and entering the circulatory system and eventually the lymphatic system and finally out. The pay-off in the end is renewed focus, energy, no dark circles, and increased health (details depending on the person).

So that's that!

School update: Nothing too exciting to report although to my surprise, he's no longer playing with The Best Friend every day at recess. This has been going on since Kindergarten, where they first met. They had different teachers for 1st grade, but preferred to play together at recess and their friendship continued. They are reunited again this year for 2nd grade.

Now, his Best Pal is really into Star Wars, something that Leo doesn't care about much. He also thinks his friend is "annoying about it", and whips out imaginary light sabers whenever possible, including music class and gym whenever the opportunity arises. He is also turned off by the fact that the Best Friend gets into trouble "a lot" in class, distracting Leo when he's trying to read or listen (both need undivided attention since he's not a natural multi-tasker).

To date, Leo prefers to play baseball with other kids in his class, along with one of the gym teachers pitching. Funny, how Leo works. He watched for the first couple of months, and finally had the courage to try it and risk failure in front of the entire 2nd grade class. He's still quite the perfectionist and now I see a competitive streak when it comes to sports. He really WANTS to be good.

Researchers Report Mad Cow Breakthrough

U.S. researchers say they have developed cattle that may be biologically incapable of getting mad cow disease, the Washington Post reported.

As a result of genetic engineering, the animals lack a gene that is crucial to the progression of the disease. The cattle were not designed for use as food -- rather, they were developed so human pharmaceuticals can be made in their blood without the risk that the products might get contaminated by the infectious agent that causes mad cow, the newspaper said.

The agent -- a protein known as a prion -- can cause variant Creutzfeldt-Jakob disease, which can be fatal to humans.

Scientists said the animals will facilitate studies of prions, and similar techniques might be used in subsequent development of animals with more nutritious meats. The U.S. Food and Drug Administration has said it will set more stringent standards for engineered food animals than it recently set for clones.

"This is a seminal research paper," said Barbara Glenn, director for animal biotechnology at the Biotechnology Industry Organization.

The Washington industry group represents Hematech, the Sioux Falls, S.D., company that created the gene-altered cattle.

"This shows the application of transgenics to improving livestock production and ultimately food production."

Source: Science & Technology

I say band-aid.
I say band-aid with unforseen consequences! The U.S. government is ignoring the source of our food supply problems (centralized production) and promoting more designer animals that leave us in even more dire straights.

Does anyone know what a prion is? No one really does. They've been scratching their heads since I first heard of it in college. It seems to be "sort of" part virus, part bacteria. Scientists don't KNOW, but our government is eager to risk society regardles. Again, they pick and choose what they want science to stand behind.

Don't get me wrong, I'm certainly not "pro-mad cow". It would be great if lots of people wouldn't get sick or die because of this illness, as well as the cost of killing infected herds. But wouldn't it be great to look at the science we do have, the methods and history we do have, that all point to one thing. It's time to redesign our farming methods! For health, for cost reasons, and for ethical reasons.