Tuesday, February 26, 2008

No Hope!

That's what we were told by most of the medical establishment. The Web, on the other hand, was telling us that if we spent our money with X person or X treatment, our child would be spouting poetry within days of beginning treatment.

Ya gotta love snake oil salesmen. . .

Then you've got the groups and individuals who believe that uncontrollable bowels, fits of screaming, smacking your head against the wall for hours on end, biting yourself, biting someone else, or seizures are supposed to be acceptable? Maybe the message is a little
too obscure for me, but I'd like my son to be integrated into society.

It's okay, and encouraged to be different in our house, but when you can't function in this society, (is there another society out there?) then maybe we should be working on that integration thing.

I know my son is smart, he's got a really great sense of humor, and he's got an ear for music, (just watch him shush Mommy, who tries hard but doesn't carry a tune well). I believe that my son is an individual who is a person separate from his ASD. I'd like to meet that person.

We've spent Tens of Thousands of dollars on supplements, therapies, and treatments for our son. Some have worked for a while, some not so much, but we'll keep trying. I've seen my son's frustration when trying to communicate with us. I've seen him get embarrassed because
someone points out his liquid diet, or his nearly constant humming.

When I see children, (or sometimes adults) staring, I try to ask them if they have questions. Sometimes they do, and I answer them as best I can, in as few words as possible, (general lack of attention these days). Most of the time, they shake their heads and go back to whatever they were doing. Doesn't matter, they've still embarrassed my son. He sees and understands, but can't quite act/react to his environment.

Thursday, February 21, 2008

The Treatment/Services Conundrum

"What can we do about this?"

Hmmm, just like everyone else, we hit the web. The wife throwing in hundreds, (I mean that literally) of hours researching what to do with a child with Autism. (They weren't calling it a spectrum disorder yet, but we'll get there.)

ABA? (applied behavior analysis) That sounds good, let's see if we can find someone in, (insert major city here) that can do that. Oops. The only center in town has a waiting list, and the at-home therapy people apparently think they poop gold, because they charge $50 to $150 per hour! Okay, we'll put that on the back burner for when we win the lottery.

CFGF? What the hell? Casein Free, Gluten Free diet. Seems that this 'genetic disorder' allows these kids to have massive problems with digestion, inflammed bowel, leaky gut, (what?) and a host of other digestive problems, including food allergies.

Seriously, after numerous treatments with antibiotics, the child's stomach and upper intestine walls have sores or lesions that allow hard-to-digest foods to pass directly into the blood stream. What's
hard to digest? Glad you asked! Casein, which is a protein found in Cow's Milk, and Gluten, a protein found in Wheat. Both of these proteins will pass into the blood stream and head directly for the brain. Once in the brain, they act as opiates, (like opium. . . yep, a potent narcotic pain killer/addictive drug.) Have you ever tried to find food that didn't have one or both of these? Double Shit! (Lot's of poop references in this post, which is appropriate, because from then on, we spent more time talking about poop than we did about work, TV shows, chores, bills, you name it! Poop, poop, poop!) This is the one thing we pursued first. My son was still young enough to be eating baby food, so switching to brands that he could eat should be relatively easy, (relative to finding other therapies, that is.) My wife took the withdrawals on the chin since I was in school for the morning screaming marathons. My son was too tired to keep going by the time I got home, but still wanted to go out to a park/playground. Yep, you heard right, my son went into withdrawals for about two weeks. Almost constant crying, diarrhea, (there's poop again), runny nose, shakes, then constipation, (no poop!) all symptoms of withdrawal. After two weeks he showed some real progress on his cognition, but unless you're with him all the time, (or have gone through it) it's tough to explain this. Each gain is like a VERY slight difference in a shade of grey. We see it, but others might not even notice.

Speech Therapy? Apply for med-waiver. Here's the form. Be prepared to wait until hell freezes over to get a response.

Occupational Therapy? Apply for med-waiver. Here's the form. Be prepared to wait until hell freezes over to get a response.

Physical Therapy? Apply for med-waiver. Here's the form. Be prepared to wait until hell freezes over to get a response.

Respite? Don't make me spew soda out my nose! Oh, that was a good one! Stop! You're too funny! Didn't anyone tell you there's a 'Genetic Epidemic' going on? Where are we supposed to get trained people for all of this? Go on, really. . . no really, go away.

Your son needs supplements! Buy this supplement, no wait, that one has the wrong kind of vitamin C, buy this one, no wait, this one has lead from China! Keep buying! We know you've got money somewhere.

Will insurance pay for any of this? (Wait a few minutes for the insurance rep to stop laughing, then give him/her a raspberry, or something more inventive, and hang up.)

Wednesday, February 20, 2008

Insult to Injury

So, we'd moved, put our house on the market, I'd started school, we were learning about a new area of the country, trying to find a daycare so that the wife could work while I went to school, and now, we had to learn about autism.

The first thing we found out is that no daycare will accept children with autism. Oops.

Um, we've already taken out loans for my schooling, and we're past the refund period, school is during the day, and now my wife can't get a day job to pay for our living expenses because our son can't be in a daycare program? How's that supposed to work?

Let's heap a little more on to that! Our son no longer responds to his name, doesn't want to wear clothing, thinks feces is the greatest paint on earth, will sit and watch water pour from a garden hose for hours on end, likes to sit in the middle of the parking lot and drop rocks down the drain grate, won't eat table food, and will 'melt down' if we try to get him to do anything he doesn't want to do.

Hmm, let's also add a little dash of constant stares because our son still drinks from a bottle at age 3, slap in a little embarrassment in because he can't stand solid foods, (he will throw up at the drop of a hat) and so he only eats baby food.

Mix in a little of the snide comments from people standing in line behind us at the grocery store who have no fucking idea what it's like not to sleep for days on end while he escapes from his crib and moans or comes to us silently demanding a bottle refill by pressing the empty into our sleeping faces.

Dumps every building block he owns out on the floor, tears every piece of tissue from the box to leave them covering the blocks. Try walking on that in the dark and not making a sound because his hyper-sensitive hearing would wake him up.

Oh yeah, I also love it when he climbs into a laundry basket with his blanket and just sits. Too tired to do anything, including walk, for hours during the day, but then can disappear at any moment unless we keep the door barricaded.

Did I mention how much I hate cleaning feces from walls, cribs, mattresses, sheets, children's hair, fingernails, and carpets?

Oh yeah, then have the facilities people at our apartment complex bring in a service to spray pesticide around the entrances to our apartments, bury more in the area where my wife is trying to plant flowers, while my son plays endlessly with the water hose in the dirt, so that they can start allowing large dogs on the property. Can't have empty apartments because they're too expensive now can we? We got our first seizure from that one. . .

Then, my wife and I get called hysterical and that we are desperate to find someone or something to blame for our son's autism. Are you kidding me?!

A River in Egypt - Denial

Let's see, how many ways can you think of to come up with excuses as to why your son doesn't talk, won't make eye contact, and spends hours, (like 3 hours or more at a time) rolling a ball down a tilted box?

My wife started to worry about him way before I did. She's smart, even if she does bite every now and again. . .

We got the usual comments,

"Einstein didn't talk until he was [insert some absurd number here]!"

"Children who are really smart develop slower."

"Don't worry, all kids are different!"

"He's such a quiet child."

Both of us were new at parenting, but being a new parent had a side effect. I couldn't answer a simple question: "Is this normal compared to other children?"

I don't mean the stimming, I knew that wasn't right, but again, I was desperately paddling upstream on that river in Egypt, but the speech and lack of interaction with anyone was starting to penetrate the foot-thick armor surrounding my senses.

I kinda remembered what I was like growing up, and being the oldest, I remember a little of what younger siblings were like, but not clear memories. More like the flashes you get when visiting an elementary school after not being in one for years.

Looking back, I can see that his behavior wasn't normal, and the warning signs were all there, but hindsight is always 20/20.

We were also right in the middle of a major change in our lives, moving a thousand miles for a change in my career. While not an excuse, (nothing is) I know it was a distraction for both of us.

Tuesday, February 19, 2008

Still Hangin' in There

Our son was making progress. Learning to walk, making gestures, brightening, and piles of other hints that all was well. He was trying new foods, we were starting to potty train. . . I was in hog heaven. Living the dream. A beautiful wife, an even more beautiful child. . . The only thing missing would be some uplifting elevator music playing in the background!

The wife had convinced me that we should be very careful with vaccinations, because she had been doing some reading on the Net. She also told me that her father/uncle, (don't get me started on the family tree here, think about a wiring diagram of New York City as envisioned by Dali) had been allergic to Penicillin, so we should be careful with any medications that might be prescribed for our son.

This still wasn't enough of a warning, and the Net was still just becoming a popular way to post information. I mean really, the wife was using the Alta Vista Search Engine! Flashback!

(If this seems like watching a train wreck, just wait, it gets better or worse, depending on your point of view.)

The wife wanted to avoid vaccinations all together. I was still "The great dupe" and thought that vaccinating was the ONLY way to keep my child safe from all those bad bugs. Anyway, our pediatrician told us we should wait several months before getting his first vaccine, pushing off the decision to vaccinate or not. My favorite, procrastinate!

We waited until our son was 7 months old before we got his only vaccine. The Haemophilus influenzae type b (Hib) vaccine. Here is a link to an
article describing the vaccine and the disease it causes, er, um. . . prevents.

I was at work and got the call from my wife.

"He hasn't woke up since his shot! He's been asleep for more than 2 hours. What do you think? Maybe I should call the doctor's office."

I agreed, although for some reason this still didn't raise a big, bright, red flag for me.

She called the office, and got a nurse who told her to, "Relax and enjoy it honey."

Our son slept for 8 hours after that shot. The wife couldn't get him to wake up for 8 hours.

I'm now convinced that that one incident was the straw that broke the camel's back. He had been struggling before that with the usual rounds of antibiotics for colds, and an eye infection that didn't want to go away, but this was too much. I had forgotten how much this part still pisses me off.

The Early Years - B.A. (Before Autism)

We did the usual things that parents, especially new parents, did. We went and got family photos, picked a pediatrician that was, mostly, aligned with our way of thinking, and constantly read about how to keep our child safe. Meanwhile, we had purchased a house, (70s era place) and bought new furniture to go into the house. We were still working out the single to married things, (translation: she was getting rid of anything of mine that had no taste or looked juvenile).

Another land mine! Due to regulations in this country, it's illegal to sell furniture that doesn't have some kind of fire retardant, including mattresses. Let's do a Google, shall we? I did a search for "Furniture Fire Retardant late 1990s" on Google while I'm writing this. I've got 6 tabs open to different articles on the dangers of fire retardant.

Here are a couple of hits:

"Brominated flame retardants are chemicals that reduce the spread of fire in a variety of common products from fabrics to plastic. First introduced 30 years ago, they are now widely used despite minimal health testing, and they are rapidly building up inside our bodies. The testing that has been done indicates that brominated flame retardants are toxic to development and the levels found in some mothers and fetuses are rapidly approaching the levels shown to impair learning and behavior in laboratory experiments." - SF Chronicle, 11 June 2003

Wahoo! Let the Autism Diva figure that one out!

Here's a link from Science Daily to a study of household cats getting thyroid disease:

If chemicals do that to cats, what about infants?

This one from Sightline Institute:

Check out my entry on breast feeding for this one. . .

Then we're back to metals. Another nasty one is antimony. Google to the rescue!



This stuff is still in furniture that is passed down through families that can't afford to buy newer safer stuff. Think of all the baby cribs and mattresses out there still creating problems.

What amazes me is how gullible I've been! I always thought of myself as an intelligent person, but after my son was diagnosed, I found out what a babe-in-the-woods I'd been.

Monday, February 18, 2008

A Little About the Author

Okay, by now, you've got this image of a tree-huggin', vegetarian, sandal-wearin', liberal arts kind of metrosexual guy. (I had to explain metrosexual to the wife, which is really funny if you know us).


Not really. I'm not a sandal fan, haven't hugged a tree in recent memory, (not sure about a few years in there. . .)
I believe that if we weren't supposed to eat animals, they shouldn't have been made out of meat.
I am an artist though, just don't have a liberal arts degree. . .yet. . . must resist. . .
I'm ex-military, and I like to think of myself as a middle-of-the-road kind of guy, and no, I'm not a metrosexual in any tangible way (I'm not getting waxed or pedicures or whatever, so there.)

Anyway, back to the story. After barely making their escape from the secret underground lair of the AMA establishment. . . wait. . . where was I?
Oh yeah. . . after leaving the hospital where my son was born, we went to see an acupuncturist, (didn't think I had it in me did you?). She helped my wife start breast feeding. Yep, straight from the source. What more goodness can you give? Did I mention what it was? Once again, the common wisdom at the time was that the child only gets the good stuff, colostrum that carries a mother's immunity to the baby, then sustenance for baby that also helps mom get back into fighting trim. What could be better? In hindsight, the wife should've done saunas for at least a year before even considering getting pregnant. We've now figured out that breast feeding is yet another way for the mother to get rid of toxins. That's right, mercury, cadmium, you name it, the whole shebang. Again, we didn't know this at the time. The wife thought she might be in trouble, but no one would listen, including me!

"Oh honey, that was a long time ago, surely it's out of your system by now. . ."

I've since learned not to say that.

If you have some background in biochemistry, (I sure as hell didn't before my son was diagnosed) you might be starting to see the problem. Here's the deal. Once you have heavy metals in your system, the problems begin. Heavy metals do not pass through the body like most things. In fact, heavy metals are only in the blood stream for VERY short periods of time, making blood tests pretty much useless. Heavy metals tend to settle in soft tissue, and on or around nerves. Where they settle, damage happens. Nerves start to misfire, cellular communication becomes difficult or impossible (that's the messages sent back and forth between cells of the body, not being out of monopole range), empires crumble, financial systems crash, you get the idea. If the person has an intact system, the toxic material slowly gets pulled out using up glutathione, a natural system cleanser, (kinda like the human bodies comet). More on glutathione later. Another good way to get rid of toxins is, drum roll. . . sweating! That's right! Nasty, smelly sweat. So working out, saunas, gettin' busy, running, worrying about bills. . . things that will make you sweat help the body to get rid of ALL toxins, not just metals.

Wow, I didn't mean to end on a high note, but there you are. More later.

Toe the Line - You must follow the herd!

"Don't be silly! Of course you need to vaccinate your child for Hepatitis B right after birth. It says so right here in the schedule."
You wouldn't want your son to catch a disease transmitted from the dirty needles of drug abusers would you? [sarcasm] 'Cause I was thinking that right after we get out of the hospital would be a good time to show him how to mainline crack! [/sarcasm]

I really like that one, but here's another:

"You should circumcise your newborn while he can't feel it!"

Stop! It's too funny! I mean it, you're killing me here! You're making my sides hurt! So nerve endings don't function for, what, a few hours after birth? Then what's the deal with the Apgar test? Has the human penis become such an object of revulsion that we should cut part of it off just to make it a little easier to clean?

Wait, here's another one:

"Don't you want what's best for the baby?"

I heard that one about 20 times in the first 2 days of my son's life. The condescending manner in which it was said just made me angrier. It's as if no one can possibly know anything that the nurse or doctor hasn't already considered and rejected as complete nonsense. Last time I checked, medical personnel put their pants on one leg at a time just like the rest of us. They get tired, bored, angry at spouses, have bills to pay. Mistakes happen all the time. Why do you think malpractice insurance premiums have gone up so much? Believing EVERYTHING a nurse or doctor or any medical practitioner says is a great way to get yourself or a loved one into deep doo-doo with a quickness.

Hell, I'm guilty of it too! I used to believe that if you attended medical school, your feces stopped stinking and you automatically knew the answers to life, the universe, and everything. Really! If I hadn't believed that, I might have paid more attention to my wife when she told me about her mercury poisoning. We both fell for the 3rd one up above when we allowed the doctor to administer Pitocin because the wife's water had broken, but she hadn't started contractions.

Looking back, I believe that the doctor was more concerned with her own situation and wanted to get our pregnancy out of the way. As I recall, her mother was having some kind of problem, so she didn't want to be helping us, she wanted to be with her mother. Can't say I blame her, but I sure would've liked to have had someone else handle the wife's labor who WASN'T in such a hurry!

We had to rotate guards on my son so he wouldn't 'accidentally' get vaccinated before leaving the hospital. Me, my sister-in-law, then my wife, rinse and repeat. Once, my wife had to tell a staff pediatrician to let go of my son's foreskin! She, (the pediatrician) was trying to demonstrate that it, (the foreskin) should be removed. You don't retract the foreskin on a newborn! Look it up! Google it! Get away from my child! Drop the penis, take 2 steps back and no one will get hurt!

And still I thought we'd dodged the bullet after our stay in the hospital. . .

Storm Clouds on the Horizon

My son did the usual things for his first year, year and a half. He started walking at almost exactly one year. Put on weight like he should, his blond hair was too pretty to cut, so his hair was getting long and driving his Great Grandma nuts, (She used to be a Beautician, back when people actually went to school to learn their trade).

The storm was coming.

My wife REALLY took to the Internet. She has a masters degree in marketing and LOVES to research. Once she figured out search engines, (back in the late '90s) she was off and running. After we found out she was pregnant, she REALLY started to research health and safety information for children. To her credit, she tried to explain her misgivings to me, hell, she tried to explain to her regular doctor, the OB, even her chiropractor, but I was blissfully ignorant of any possible problems, and so were her doctors, every one of them. She looked healthy and attractive, what could be the problem?

You see, my wife knew some things that I didn't, (obviously). She had worked in a job while she was in college doing mercury porosimetry, (it's materials analysis, but it's easier for you to Google it than for me to explain). The company she worked with didn't/wouldn't install fume hoods, so everyone there got dosed with industrial grade mercury.

How can someone get away with that you ask. Well, when you're friends with the OSHA inspector, it's easy to 'accidentally' find out about surprise inspections so that you can close down areas that might, (read that, would) violate OSHA regulations. Keeps the safety records nice and clean, and since the employees are making the only decent wage to be found in a small southern town, they're pretty desperate to keep working and not rock the boat.

[sarcasm] On the other hand, when her hair started to fall out and her gums started to bleed, my wife decided a toxicity test was in order [/sarcasm]. Submitted a hair test and found out she was nearly lethally toxic with mercury, which was enough impetus to get her to quit the job. Unfortunately, back then, no one really understood the problems she was going to have nearly 20 years later.

Thursday, February 14, 2008

A Little History

3229 Days.
77496 Hours.
8 years, 10 months or so.
That's how long I've lived with a child on the Autistic Spectrum as of this post.
I've been married for more than 10 years, we have a dog, a nice house, 2 cars, in-laws, and the mortgage.
I was so happy when my son was born. See, my wife is a little older than I am, and the doc told us she only had a 15 percent chance of getting pregnant due to her age, but we had decided that if she did get pregnant we'd be happy, and if she didn't, we wouldn't worry about it.
Several months later, (after a mostly disasterous anniversary trip and a slightly less-than-energetic vacation) she showed me the little dipstick pregnancy test thingie with the pink plus sign showing.
The usual amount of time later, our son was born. A wailing 6 pound, 15 ounce baby boy, with 10 beautiful long fingers and 10 little toes, and a tuft of hair that had given Mommy heartburn for several weeks prior to his arrival. He scored an 8.5 or 9 on his Apgar test and we were on our way as new parents.
More on the hospital stay later.
Holy Shit! Why is it that no one tells you that you'll never sleep again? I guess it's to keep prospective parents from veering away from having children. If we actually knew how much work being a parent is before becoming one, no one in their right mind would volunteer to put themselves through that!
Feed the baby, change the baby, hold the baby just so, see how nicely they nap during the day? Oh, that's because they have their days and nights mixed up!
Baby's crying, okay 3 things, hungry, sleepy, or in discomfort. Just ate, check. Right after getting up from nap, check. Diaper? No, still clean from the change right after getting up from nap, check. Still crying. What now? Pick him up and he quiets some, but is still whimpering.
Find a passage in one of the baby books about relieving gas pain. Basically, fold the child up on your lap and (always very gently) squeeze the gas out. Wife and husband watch in awe as husband does this maneuver over and over for several minutes while the child continues to fart. Both are now laughing so hard tears are running, and the farts continue. Squeeze, fart, squeeze, fart. Finally, after what seemed like 20 minutes, baby quiets and his mood improves. Score another win for the exhausted, but happy parents.
Enough for now. . .