I never had the kids but have the boobs and the belly ...
Oh, and well done Clod! Can you do my birthday not-cake too? Srsly, you could probably start a business right there!

Looks fantastic! I actually have a Pineapple and a watermelon at home - may pick up some grapes and try to replicate/duplicate your creation.

You are doing an amazing job! Hope all goes well with the surgery.

oh, and what Limey said.

He's a cute kid, Clod. Get the Chloroseptic ready.

Hope the surgery went well.

Surgery went great! They did not, in fact, end up taking out his tonsils, but the surgeon said they just weren't inflamed at all and he couldn't justify it. The adenoids, on the other hand, were large enough to be blocking 50% of his airway, so aside from the infection they were almost certainly interfering with his sleep as well.

Immediate post-surgery was fairly unsettling for me, though. Even with the lightest of anesthesia drugs (which the anesthesiologist was a total dick about, but in the end he agreed not to use the drugs I told him were unsafe for my son, which is all that matters,) he still hadn't woken up an hour after surgery, even with the nurse physically shaking him, and we had to resort to wiping him with a cold wet cloth to force him out of it. At that point he leapt outward in a confused rage, one eye more dilated than the other, drooling profusely, with his head lolling about uncontrollably. But after another half hour of restraining him in my arms and trying to convince him to drink some water, he was finally clear-headed enough to travel to a real room and watch his favorite DVD for another hour with only moderate yelling.

When it was time to go home, I sat in one of their wheelchairs while continuing to restrain him, and a kind nurse wheeled us all the way out to our car, and then helped me force him into his carseat. Halfway home, he threw up all over himself... and from that moment on, he was basically fine. We got home, he calmly changed clothes and ate a big meal, and happily played for the rest of the day. The surgeon called that evening to see how he was doing, and seemed sort of bewildered at my description, especially after seeing how he was in the recovery room. What can I say, he's a kid of extremes.

Less than a week later, we've seen a huge reduction in the OCD behaviors that led us to this point, and he's back up to his peak. I'm very happy with the way everything turned out. Meanwhile, I've compiled another progress video. He's begun teaching himself to play songs on the toy saxophone:

Jeez, what a horrible experience, but I'm glad it all turned out positive. Our kid has had tubes put in twice, and it's been unsettling for me to be in the recovery room when he wakes up, but nothing like what you had to go through. Just 5 minutes or so of inconsolable crying and some minor thrashing around.

I'm glad you are seeing big improvements!

Just had a chance to watch the video. So he's reading some at his 4th birthday? That's pretty impressive. My kids knew their letters before entering kindergarten at age 5, and could read and write their names, but reading for them (and their classmates) wasn't anywhere near that advanced yet. Based on my experience, I think Minifob is almost 2 years ahead of most other kids in reading.

He's looking good in that video. Sitting still and focusing.

Clod, glad to hear everything went well.

your doctor story reminds me of a former cow orker. BIG guy. 6'5" easily 230 lbs of solid muscle. he had to have his knee put back together and because of previous experiences he warned the doc that he needed A LOT of the knock out juice and it could only be a particular type and he absolutely must be restrained otherwise he would have a involuntary violent reaction. He gave the warning, his wife gave the warning, and his mother who is a surgeon gave the warning. They were all ignored of course.

They hit him with the first med and it only made him twitchy and shaky so they gave him a second even though he was begging for them to listen to what they'd been told. When they hit him with the first try he sat straight up hit the doctor breaking his nose. At that point they restrained him and jammed him full of whatever the hell they should have used the first time around and out he went.

the doctor wanted to press charges but the nurses all verified the numerous warnings and requests the doctor had received so it went nowhere.

So glad to hear that Clod. Hope things improve as he heals.

Yeah, but the funny thing is, for a lot of kids on the spectrum, reading early is actually expected. He knew all his letters, upper and lower case, and the (multiple) sounds they made, at 18 months. I want to say more than half of the kids on my local biomedical messageboard were starting to read at 3. Yet at the same time, he can't write any of his letters, or shapes, or anything. The only thing he can do with a crayon is imitate a rough closed-circle shape. That's more than 2 years behind where he ought to be.

Anyway, the reading (and the saxophone playing, for that matter) are both nice, but for him, the spontaneous commenting on what he sees in the pictures is far, far more impressive.

Clod - what terrifying experiences for you and him. Really glad you're out the other side of that, and seeing such great positive results so soon!

Clod, fwiw, that's my kids too. especially Thor and Hebe a bit. reading early, drawing/writing skills of a drunken sloth.

That play video -with the train track- struck me as a regular 4yo. nothing seemed odd. WHat you're doing is working.....

We're pretty happy with the results for him so far. :) Still not getting a lot out of Minifobette, sadly. Round after round of antibiotics, and the stool tests keep coming back just riddled with bacteria. She does better when she's on them, but we always lose it again when she goes off them. At this point I think we're going to change tack and focus on aggressively addressing her immune system instead, in the hopes that if we fix that she can kill the infections off herself. But that might translate into a weekly needle in the arm, which would suck. We'll see...

Craziest fucking thing happened today.

Okay, so, you may recall a bajillion posts ago I talked about how Minifobette couldn't seem to tolerate calcium supplements? Didn't really understand what to do with that information, other than not give her the calcium supplements, so I just sort of shelved it and moved on. Well a couple weeks ago I got hooked up with a series of research papers on the apparent subgroup of autistic kids who can't process calcium, the biological mechanics behind it and the typical symptoms and all that jazz. Long story short, the treatment is high-dose vitamin K, plus a few other things you're supposed to do alongside the K to mitigate some side effects.

So we started her on the K, and saw big improvements in both speech and awareness. Speech therapist was very impressed with the change. Hooray! But I was waffling on the necessity of the supporting supplements. They're just supporting, right? But two people on the K treatment discussion board stressed that if nothing else, you absolutely need to be doing this electrolyte drink (made from salt and potassium chloride; basically homemade Gatorade without the colors and sugars) alongside the K, because otherwise it will dehydrate the shit out of you and/or cause weird water retention problems. But Minifobette is really, really picky about her drinks, and I was unconvinced I could get her to drink it anyway. She was drinking plenty of plain water, I rationalized, and I just never got around to ordering the container of potassium chloride.

So today, we went to our local pool, and while we've been several times already this summer, this time the kids got into this whole drinking/spitting game with the pool water. Both of them had to have swallowed at least a quart, despite me telling them repeatedly to cut it out. And as we're leaving, Minifobette is just talking up a storm, doing fucking fantastic. They're always happy after a couple hours of water exhaustion, but this was different.

After we got home she peed a ton, like 3 or 4 diapers bursting at the seams. And still more talking. Curiouser and curiouser. This continued to nag at me, until tiny hints of memories and seemingly useless facts started to coagulate. It couldn't possibly be! But it is:

Last year, the district converted all our pools to saltwater. A search of our MUD website confirms that our saltwater pools are salinated with the more expensive, but higher-quality chemical combination of... magnesium and potassium chloride. My daughter guzzled therapeutic pool water.

That's bizarre. Then again, so is your life.:)

awesome. now get bust with that fobbleaid.....

Or I could always just take her back to the pool. The pool passes are paid for, and it's not like I can stop her from drinking the pool water anyway, right? :)

Kind of hard to regulate the dosage, though.

Plus she gets to drink all the other kids' pee!

I just love to hear whatever you find that makes Mini better, and I particularly love they way you tell the story! :)

Yeah, me too.

Bingo!

Hey Clod, are you getting any kind of inkling what could have caused your kids' autism? Sometimes knowing the "cure" will give insight into the disease. What the heck could be out of kilter in kids' bodies that causes autism symptoms, and that vitamin K and Gatorade fixes?

Wow Clod, That is a fortuitous discovery. It makes sense that without adequate electrolytes nerve functions would be impaired.

You, umm, should write a book. ;)

who would'a thunk

seriously potassium and magnesium rocks!

it helps calcium absorption

helps with muscle cramps too

I second the book idea. Srsly, you almost have to do that...

In your free time, of course.

Supposedly, the electrolytes aren't so much an autism thing, they're just an issue because we're depleting the crap out of them with the high-dose Vitamin K (to account for the calcium buildup, which is--or can be--an autism thing.) How high-dose, you may ask? She gets 12 drops per day, and one drop is 1250% of the RDA. Anyway, by replenishing the electrolytes, we're really just making the K more effective at doing its thing, which is breaking down and removing her excess calcium. This ties into her digestive issues, because calcium is a primary building block of mucous, which her gut is apparently full of. Suck out the calcium, and you start to break down the mucous, after which point we can (in theory) try going after the bacteria again once its cute little slime shield is down.


Funny thing about the book idea, do you have any idea how many books are out there written by parents who have completely recovered their children? "Autism recovery" on Amazon gives 57 book results, about half of which are personal memoirs about specific children. The problem is no one reads them unless they already have an autistic child. But maybe I'll try to convince my son to write his own book about his experiences, eh?

Experts in the field have written entire books answering just the small part of what we know with regard to that question. If you want, I can send you the paper that focuses on just the calcitriol problem. But that's by no means the whole disease, and it's not even part of every kid's disease.

The complexity and varied causes of this disease give me the sense that there is something much greater that is going on here, though I have no idea what it might be and I feel any attempt right now to identify it would be just more looking at the leaves of a handful of trees rather than the forest.

I suspect that the more you uncover and confer with other parents who have these issues with their kids the bigger the picture will become and common underlying causes will be revealed.

Most researchers agree we're actually looking at a collection of different disorders, probably as many as 15-20. The "something much greater" is that so far, every piece they can pin down appears to be directly or indirectly immune-system-related.

There's a huge research initiative at Autism360.org, where you are encouraged to create a profile for your kid detailing every specific symptom they suffer from, every treatment that helped/hindered, and which symptoms each treatment affected. The goal is to have enough profiles to one day be able to use it like a social media system, where you can search for kids whose symptom profiles are an exact match to yours and see what treatments were effective for them.

That's great idea, but as you've related here, many parents won't even admit there's a problem. :(

Out of nowhere this evening, my son gave me a hug and said, "I love you" for the first time ever. :joylove:

not out of nowhere.

good for you, mommie.

Wow!

I'm overjoyed for you!!!!

Now you've made me happy!

Awesome!

This is wonderful news.

That is so utterly Awesome!

That's great to hear, Clod. Hopefully it's the first of many, many times.

Fantastic! And I agree, it wasn't out of nowhere, it was out of all you do for him.

Only the first time he's verbalized it, not felt it.

For Clod ... sorry its so long...
Sailing Program Provides Therapy on the Waves
Dani Buckley was not about to get on the sailboat.
"Being the mean mom that I am, I said, 'We’re gonna go,' " recalled Julie Buckley, Dani's mom. "We had about to lift her onto the boat."
And so the mother cajoled the daughter on board George Saidah's sailboat, part of the Heart of Sailing Foundation's fleet. The organization, which turns 5 this month, has introduced 10,000 children with developmental disabilities to the joys of sailing.
Dani and Julie have been sailing with Saidah and his crew for two years, in Florida. The nonprofit has chapters in 11 other states as well as Canada, France and Puerto Rico.
Dani was diagnosed with profound autism when she was 4. After years of intensive biomedical therapies researched by Julie, a pediatrician who now specializes in autism, Dani currently has what Julie calls "autism in recovery."
The 11-year-old is a gifted, mainstreamed student, but still suffers from low muscle tone and above-average anxiety. On the boat, her worries disappear. She even steers.
Heart of Sailing places children in the captain's seat, offering them a level of responsibility they are not often granted on land.
"They are in charge," Saidah told AOL News. "It's a whole opportunity for them to do things that they've never done before." And for their parents to realize just how much their children with disabilities can accomplish.
"The family is usually very impressed with what their kids are doing," said Saidah. "It opens their eyes in terms of how much they're able to do. The parents are usually the ones that are holding back the kids. They don't want them to fail or have a bad experience."
Julie knows what he's talking about. She nearly had a heart attack when Dani took the wheel.
"She was driving the boat. I was having chest pain that she was going to bump into something, and George was just having her drive the boat right in. He was much more confidant and trusting than I was."
George is confident about Dani because George used to sail with his cousin Emile. Emile has a developmental disability, and sailed with George all the time when they were young. If Emile could do it, Dani and other kids could, too.
And so when George, a successful software entrepreneur, retired in 2004, he rounded up his Indiana sailing friends and their boats. They sailed the kids out to sea, and the program took off.
Julie said Dani has reaped multiple benefits from Heart of Sailing, and has returned to the program several times since her first reluctant sail.
"It's good for her balance. It’s good for her strength," Julie said. "It’s been a wonderful tool to help with anxiety and confidence and trying something new."
Julie said the program also has benefited the rest of the family: herself, son Matthew, 15, and dad Dean.
"From a family standpoint, it’s just nice to be able to go out somewhere and do something where you're in public ... and to have it be completely accepted. You can relax and really enjoy," she said.
Saidah said this family experience is part of the program’s goal: to encourages families to let go of their child-centric worries, and instead to celebrate their child’s abilities and enjoy life as a family. Everyone benefits.
"When [the parents] relax, and the tension between the kids and them relax, then the kids are performing much better," he said. "When they are in public, they are afraid of the public that is going to look at them, saying something to them that’s going to hurt their feelings.
"Here on the boat, nobody cares. Just let go."

Link

That's funny that you posted this just now... last week we got to participate in a similar thing, where the kids were able to ride in boats (motor boats though, not sailboats,) and be pulled behind in inner tubes, or waterskis for the ones who were big enough. Minifob loved it. Since that day he has switched back from taking showers every night to taking baths, so he can play with his boats in the water.

In other news, Minifob has officially had his first experience with ABA, which is a type of intensive behavioral therapy. We've stayed away from it so far both because of cost (anywhere from $20,000 to $60,000 a year,) and because I really prefer methodologies that are social/relationship-based, rather than treating my child like an animal to be trained. (Quite literally, ABA therapy most often uses tiny pieces of food as rewards for preferred behavior. It's intensive and the result is automatic obedience, not necessarily understanding.) But one of our local places offers some very small, short-term clinics for specific skills, as an alternative to their broad 20-40 hour/week programs. These include the feeding clinic for picky eaters, the potty-training clinic for the poop withholders, and the medical compliance clinic, aka sitting still for IVs and learning pill-swallowing. They've done these so many times in an isolated setting that they have them down to a complete art.

Last night, after just two 30-minute sessions during the day, Minifob swallowed all his smaller medicines in pill form. We're doing a couple more sessions today and maybe tomorrow, to get him up to the giant fish oil capsules, but at this point it's safe to say he is officially done with syringes of nasty sludge. And the greatest part is that insurance should cover part of it, and the rest will pay for itself in a few months, since the chewable forms of a couple of his medications were twice as expensive as the capsule form.

WTG Clod. You truly are amazing.

Sometimes ya just gotta do what works. ;)

I wish I had known about the picky eater clinic 6 years ago.

thats awesome Clod! Glad to hear it!

They do actually get some neurotypical kids in there. But realistically, most parents aren't willing to pay thousands of dollars to watch someone break their child's spirit. :)

I like that they are offering the short-term clinics for specific skills. It seems like a much more humane use of the methodology.

Absolutely. I'm not against the concept as a whole, but I think for most kids the social approach is going to be more effective in the long run, for most skills.

Ah, well, I didn't realize it was that harsh. Still, I think a diet of velveeta only could have been avoided, but here we are at age 11, and it remains the same. I love her, but her bio-mom could have been more helpful in that area.

:eek: Just Velveeta? srsly? Have you talked to bio-mom about it? what does she say?

I think I oversimplified. She will eat most things as long as they have velveeta, ketchup or gravy on them. But she will not touch fish or seafood of any kind...and no beans. There is no talking with bio-mom. There is talking to bio-mom then a screeching fit always results, no matter how she is approached. Both of us have tried many times. I try to avoid her, these days.

I am sorry I don't mean to threadjack. Maybe I should start a step-mom thread.

Go right ahead, I've got stories for that one too. :)

Um, that's normal......

My 12yo dau won't eat any fishy things either. or bread things. or mushrooms. or beans unless they'e Heinz baked beans. Or fruit-flovored anything. She only drnks milk, water and tea. No pop, no juice, no nuttin'...... it goes on

You know what? That is really a relief to know that. Neither of the boys are nearly that picky and they are younger. I was worried there was some kind of weird scary psychological thing going on with her that we couldn't figure out. Of course, I guess divorce and remarriage of her parents is weird scary psychological. But I figured she was so young when it happened, we would be mostly through alot of that. This makes me realize I should be more sensitive about it. I guess I need to think on this some more.

Yeah, I'm with monster. Some kids just won't eat that stuff. My 16 yo was/is one of them. She seems to be growing out of it but is still not one to take a chance on a new food. When I was a kid, I was the same way. Some textures/flavors were just unbearable. Even today I internally curse anyone who puts bell peppers in tomato sauce. Now I just suck it up and minimize the portion.

Yeah, kerosene, to give you another reference point, the kids who go into the feeding clinic often start out only willing to eat toast, chicken nuggets, french fries--and literally nothing else. Or sometimes it's textural, like they'll only eat mashed potatoes, applesauce, sometimes a banana, and nothing else.

For my stepson, it's barbecue sauce he wants to put on everything in order to make it palatable (including mandarin oranges, of all god-forsaken things. :greenface) But as long as he's eating the green beans, barbecue sauce or not, we don't care.

I wouldn't eat steak, chicken, eggs, salad, seafood, or a number of other things until I was in my 20's. Then I learned those foods were awesome, my mom was just a horrible cook.

I can identify with that, but as a youth I wasn't given a choice.

My son's friend, who is autistic, had to have nuggets that were the right color. Sometimes he just wouldn't eat for days.