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.

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.)