spontaneous language!

so, as i'm throwing myself a pity party last week - here's how quick things turn around. autism = roller coaster.

today, i picked up holden early from school and his teacher told me that he said "bye-bye" to his classmates WITHOUT prompting. then, we got home and he climbed up on the couch and said "too off". too = shoe. took his shoes off. got up and ran to the bathroom saying "pee pee in the potty!".

since he will be 4 on april 10th, i've been hoping and praying for his speech to take a huge leap. most of his language is either prompted, or echolalia. so, any spontaneous language is great for us!!!

my kid is a rockstar.


so i was able to spend a little time away this weekend. i went to see a movie and "chill" by myself. it was nice. i needed it. i feel better than i did when i posted the last post. we chelated on friday night. a combination of EDTA & DMSA (2 suppositories). he was able to tolerate the DMSA this time, so that's great. i know we get better pulls when we do the combo. i worried a little that we'd have to go back to only EDTA after the first 2 tries, but this time, it was fine. so, next weekend, we'll do the same. saturday was rough, as it always is the day after chelation. thankfully, that's the day i had some time for myself. it's hard to watch him when he's having a tough time. yesterday (sunday) was better. he was more aware, and more verbal - whereas on saturday, it was tough to get him to say the things he always says ... without prompting. and yesterday evening, we were back to the 6:30, 7pm bedtime, so that was nice.

we'll see what this week holds, but i'm optimistic once more.


one of those days. the ones i hate having.

So, I just sent this to a friend of mine. I'm posting it here, too, because I know there are other moms out there feeling the exact same thing. And somehow that makes me feel a teeny tiny bit better. Lucky friend, huh?!

I'm afraid I'm not much (good) company today. Today's one of "those" days. I'm questioning everything about Holden and his hopeful recovery. Are we doing enough? Should we have stayed with our doctor in Tampa? Even if we wanted to, we couldn't, because he doesn't file insurance so we couldn't afford $300 visits each month. They see patients all over the world, so being here isn't a problem. We could have phone appts. But, like I said - we can't afford them. Is there something I'm missing? A therapy? Supplement? Treatment? Did we make the right decision to leave Dr. Berger's practice? I mean, isn't it worth living out of a paperbag if we have to, to get him the best treatment possible? I feel like we're dragging along now...not making much progress at all. What am I doing wrong? Why isn't he making more progress with speech? Why is he up everynight this week til 9pm, stimming away in the bedroom until his little body gives up and finally goes to sleep because it has no choice?

I guess it's just been a tough week, transitioning back to school. I keep telling myself that it's because he just needs to get back into the "groove" and that he'll be fine and we'll continue on the road to recovery and making progress.

But he will be 4 in exactly 15 days and that scares me. I had hoped we would be so much further along when he turned 4. Two years ago, I looked at "4" and thought that he would definitely be able to understand it was his birthday by then, surely, right? And, he would be talking in sentences, and telling me he loves me, right? And he would be playing with his little brother by then, and enjoying others, right? At least a little. Those are the thoughts I had and none of them are coming true and it just really really sucks.


missing the 6:30pm bedtimes

It's 8pm and Holden's still awake. SO not like him. Not sure what's going on, but I'm giving in a few days and hopefully I'll have my sleeping little angel back! uggg.

regressions? transitions?

Holden went back to school on Monday after Spring Break and a visit with grandma. She was in town the whole week. He cried when I dropped him off on Monday, but was okay Tuesday and today. He STILL has not used the bathroom at school. He's holding it all day and going when he gets home. The kid must have a bladder of steel. I just wished he'd go...just once, so he could get some praise and reinforcement and know that it's "okay" to go there.

He's been coming home from school and stimming, pretty much constantly until dinner/bath/bed. He used to be out like a light by 6:30, 7:00pm. The past 2 nights, he's been up till 8, 8:45pm. He'll go to bed, but seems to lay there and stim for hours before he falls asleep.

I'm hoping this is all due to the transition of going back to school and that by tomorrow, or Friday, he will be back on track. I haven't done anything else differently, so its all I can come up with that may be causing his current issues. He's a little more withdrawn, spacey, and less verbal. He's not labeling his language builder cards as much, but merely stimming off of them - flipping through them over and over again.

Please God let this end soon! Here's to another ride on the rollercoaster that is autism...


(appropriate) spontaneous language

I noticed today that Holden's saying more things without prompts. Some things he's saying now, spontaneously:

"pee pee in the potty"
"undies up!"
"pants up!"
"cards" (for language builder cards - loves these)
"tree" (while we were riding in the car and driving by trees)
"all done!"
"wash" (for washing his hands after potty)
"flush" (for the toilet, obviously)
"iggles" (wiggles)

He's labeling lots of things now, too. And taking objects and counting them (like he's doing now with GFCF pretzels). He's also copying Jackson alot. Jackson says "sissy, bubba, sissy, bubba". Holden looks at him and starts doing the same thing now. And sometimes, it's spontaneous and he just says it on his own.

Right now, he's outside sitting at a table, counting pretzels with his grandmother.

And his eye contact today? Insanely great!

OHHHH, and today, I took this picture of him. Playing with a firetruck - yes, appropriately. AND without prompting. He just went to it and started playing.

Today's a good day.


Blinders Won't Reduce Autism - By Jon Poling

Dr. Jon Poling, an Athens neurologist, is an assistant professor at the Medical College of Georgia. His daughter, Hannah Poling, has been a successful petitioner in the National Vaccine Injury Compensation Program.

Blinders Won't Reduce Autism

Friday, March 13, 2009

For the million plus American families touched by autism, like mine, there is real urgency to find scientific answers to help loved ones and prevent future victims. Unfortunately, some doctors still fail to even accept the increasing autism rate as real, rather than their own better diagnosis. The collateral damage of 'better diagnosis', the idea that we are simply better at detecting autism, is the abandonment of families coping with autism by the medical establishment, government and private insurance companies.

Beyond the high emotional toll autism takes on a family, many have been financially ruined. Public school systems are drowning in the red ink of educating increasing numbers of special-needs students. Fortunately, the 'better diagnosis' myth has been soundly debunked. In the 2009 issue of Epidemiology, two authors analyzed 1990 through 2006 California Department of Developmental Services and U.S. Census data documenting an astronomical 700 to 800 percent rise in the disorder. These scientists concluded that only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear -- genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities.

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes ” vaccines” are all in the research agenda.

An inspiring new text, "Autism-Current Theories and Evidence" has successfully navigated the minefield of autism science without touching the third rail, as Dr. Sanjay Gupta aptly describes the vaccine-autism debate. Dr. John Zimmerman, who has studied autism for decades, prophetically writes, "The clinical heterogeneity of this disorder, together with the inherent dynamic changes during children's growth and development, confound static, linear models and simplistic, unilateral approaches."

Zimmerman's book is dense with cutting-edge science on cell biology, metabolism, oxidative stress, neuroinflammation, auto-immunity and brain pathology. That's right, autism isn't simply a genetic program for brain development gone awry. Dr. Martha Herbert, of Harvard Medical School, writes the final chapter defining autism in the larger framework of a multiple organ system disease with potentially reversible impairments.

As an affected parent, I am left with a sense of hope that these professionals will produce results to stem the tide of new autism cases and ameliorate symptoms of those currently suffering. On the other hand, Dr. Paul Offit, the vaccine inventor whose Rotateq royalty interests recently sold for a reported $182 million, has written a novel of perceived good and evil called "Autism's False Prophets" The tome is largely a dramatic account of why Offit, who self-admittedly is not an autism expert, feels vaccines should be exonerated in the autism epidemic. In the story, Offit takes no prisoners, smearing characters in the vaccine-autism controversy as effortlessly as a rich cream cheese. "False Prophets" has curiously garnered support from several senior physicians in respected medical journals.

After Offit's drama is complete, these cheerleaders fail to realize they have traveled the road labeled "Dead End -- No Through Traffic". In his epilogue, Offit credits autism parents who have likewise gone down the dead end path to autism acceptance, without search for cause or cure.

As both parent and doctor, I cannot fathom turning my back on a child nor science, in order to avoid inconvenient questions about vaccine safety or any other reasonable environmental factor.

President Obama has recognized that we've seen just a skyrocketing autism rate and plans to appoint an autism czar to coordinate his policy efforts. Science is moving forward to connect the three dots of environment, genes and plasticity of a developing child's brain circuitry. In the end, logic and reason will prevail over politics and profits.


update on language, etc...

I haven't posted much lately about Holden's speech and how it's improving. I wanted to create a post to remind me of what's he's done lately.

About 3 weeks ago, I started something new - supplement wise. A friend told me about a "mitochondrial cocktail" and what she had done with her son - who's DAN doctor suspected a mito-disorder. Now, a while back, we had Holden screened for mito issues. His tests did show a severe carnitine deficiency. His other tests did not point to any major mito issues. However, due to the delicate nature of the tests - and the fact that they needed to be processed IMMEDIATELY to produce accurate results - I think we may have gotten a false negative. We had his bloodwork done and they had to ship off the blood to another lab - which took at least overnight. These tests needed to be done in-house, however, we couldn't find a local hospital that would do the tests in-house. So, we settled for the next best thing.

Anyway, Holden displays a lot of symptoms of a mitochondrial disorder. A list of symptoms can be seen here: .

So, a friend told me how she had started supplementing with CoQ10 & Riboflavin (Vit B2). I decided to give it a try and started about 3 weeks ago. Only giving a very small dose of both at first to make sure Holden could/would tolerate both.

Now, I'm not sure if it was just a coincidence, or if it has anything to do with it, but it seems that he's much happier, more engaging, eye contact is better, and his speech is noticably improving. He's singing along with the TV. He's using a LOT of echolalia now, and even has some appropriate responses to questions. He's labeling like crazy - language builder cards are his favorite, but labeling pictures in books, on tv, etc. Labels I've heard lately: baby, dog, pants, shirt, ball, duck, kitty cat, grass, chair, and the list goes on and on and on. He even knows his brother's name now when asked "who is this?" and pointing to Jackson. He also says "Hi Zoe", and "Bye Zoe" when she's dropped off at school and picked up. Those 2 things are prompted, but that's okay! The labeling is not prompted though.

So, who knows if it has anything to do with the CoQ10 or B2, but I'm going to continue, just in case.

potty training

We started potty training, hesitantly, on February 23rd. Needless to say, I was extremely stressed even thinking about potty training. It was written into his IEP with the school district, so thankfully, I had the expertise of his teacher (ABA therapist). They follow the Azrin & Foxx method of potty training and she explained everything to me in detail before we started. There's a punishment component to this method, which is what had me the most nervous. I prayed and prayed and prayed there would be FEW accidents so that we didn't have to implement "positive practice" very often.

Well, I am happy and proud to report that 3 full days after starting the program, he initiated on his own. Meaning, he went into the bathroom (without prompts), pulled his pants down (without help), sat on the potty, and went! All unprompted. All on his own. We still had a few accidents even after the 1st initiation. And the 1st weekend at home with him was ... really really stressful for me. We only had 1 accident, on Saturday morning, but after that, he insisted on sitting on the potty for what seemed like hours at a time. I finally gave up and just let him come out when he was ready. I think, looking back, that he was trying extremely hard to avoid "positive practice" and figured if he just sat on the potty, there would be no accidents.

We made it through that weekend and by Wednesday - he brought home his official "potty training certificate"! So, he was officially potty trained. In order for it to be "official", he had to have 20 initiations (like what I mentioned above) WITHOUT any accidents. He did it! Goodbye pullups! And, technically, it only took 9 days. NINE days to potty train. It took me 9 months (or that's what it felt like) to potty train Zoe. Now, mind you, he's still not entirely BM trained ... but that's coming. And, he has gone poop in the potty plenty of times over the past 2 weeks, so he knows what he's supposed to do. He's just a tad bit scared and nervous to sit on the potty and actually go, I think. But, if he picked up on the "pee-pee in the potty", as he says, then it shouldn't be much of a problem to get everything in the potty.

I'm so proud of him.