Wednesday, July 17, 2013

Neurofeedback Therapy Update #3

I think we're starting to see the effects we've been waiting for. We're about 5-6 weeks into treatment - exactly when Nurse Brainly said we should start noticing changes.

This week, Ryan has been more interactive than ever. Today we even had a couple of real conversations!

First, after I rejected his generous offer of pre-sucked-on hard candy, he asked me "Do you like candy?" I replied that yes, I like candy, but I don't like candy that has already been in someone's mouth, and I'm not too fond of the kind he was eating (the ones that come in a wrapper that looks like a strawberry). He then asked me a follow-up question: "What kind of candy do you like?" Whoa. I told him I like chocolate candy. This prompted him to search the kitchen for chocolate; he's my kid.

The second conversation was more abstract, which was really exciting. Upon noticing that Stu was still not home from work, Ryan asked me "Why does Daddy go to work at the office?" I rewarded his perfect question with a brief lesson on microeconomics.

Being more willing to interact with people has also made him less obsessed with computer games and videos. And a new-found reserve of patience and maturity has reduced the frequency and intensity of meltdowns, so when I turn off the tv or the computer, he doesn't freak out about the transition to his next activity.

This is not to imply that everything is now totally typical, but this week has sure been more manageable than a month ago. Here's looking forward to more progress!

Friday, July 12, 2013

Deer: 1, Car: 0, Ryan: oblivious

Around 12:30pm yesterday I was driving home from the gym via the Boston Post Road. I was in the right lane of a four-lane section, focusing on avoiding the construction zone, when I felt something hit my rear driver-side door. An instant later, there was a deer staring me in the face through my windshield.

So first I'm all

And in the rear view mirror I see the deer continue its sprint across the road, and it's all
like, "Ha ha, I crossed three lanes of Route 1 traffic just to mess with you, puny human! I am indestructible!"

And then I noticed my whole body was covered in tiny shards of glass. And I looked around.

The whole left side of my car is damaged. First the deer hit the back door,
then it somehow flipped around and hit my window and fender,
Note the deer fur where my side mirror used to be.
and finally it smashed its head into the windshield

and gave me the evil eye.

As I stood on the side of the road waiting for the tow truck, I texted a friend to tell her what had happened. Her youngest son, who is quickly becoming one of Ryan's best friends, first wanted to make sure Ryan was ok (yes, he was safely at school), and then wanted to know if I was dead or bloody. These seemed like reasonable questions for a young boy to ask.

Stu came home early to meet Ryan at the school bus while I dealt with the insurance company and the auto body shop and the rental car. When he told Ryan what had happened, Ryan's first question was, "Where is the car?" This was followed by one or two more questions about the whereabouts of the car, and then he lost interest.

When I finally got home, Ryan met me at the door and ran to... see the rental car. "Where is the blue car? Where's the bumper sticker? Do we keep this car?"

I don't think he had any idea that anything bad could have happened to me. This might be rooted in a lack of understanding of cause and effect, or a childish belief that Mommy is indestructible. Probably more the first than the last.

Today I tried testing this point a bit further. I said "Wow, I'm glad I was wearing my seatbelt, because otherwise I could have gotten hurt."

"You could have gotten hurt?" he repeated. Echolalia usually indicates that he is listening but may not have processed the words yet.

"Yes," I continued, "if I hadn't been wearing my seatbelt, my head would have hit the windshield and my face would be very badly hurt."

"Where your car, Mommy?"

I showed Ryan the photos above in the draft of this post. "Can we watch the movie of when the deer hits your car?"

Um, no, there's no video of that as far as I know.

"Can I see Spongebob?"


Yeah, he doesn't get it at all.

Tuesday, July 9, 2013

Quack of the Month: Bleach Enemas

I can't believe I just wrote that title.

So, the Archbishop Jim Humble, through his Genesis II Church of Healing, came up with a treatment called MMS, which he says "restores health from 95% or more of the world's diseases," including HIV, malaria, acne, cancer, hepatitis, and H1N1. And, of course, autism.
Archbishop Jim Humble

According to Kerri Rivera, author of "Healing the Symptoms Known as Autism," autistic behaviors are the result of standard biomedical stuff - food allergies, heavy metals, inflammation, toxins. MMS is administered to kill pathogens, remove biofilms, and neutralize heavy metal compounds, and the result is a decrease in inflammation and sensitivity to allergens. Rivera claims to have cured 93 children of their autism diagnoses.

MMS stands for Master Mineral Solution, a chlorine dioxide-based substance. Proponents of MMS are quick to say that chlorine dioxide is not bleach, but the FDA and many doctors have described it as concentrated industrial-strength bleach. Chlorine dioxide is used in treating drinking water and in the bleaching of flour and wood pulp. It is the disinfectant of choice for eliminating anthrax from government buildings.

The FDA has (twice) warned that MMS can cause nausea, severe vomiting, diarrhea, kidney failure, and life-threatening low blood pressure caused by dehydration. Because, they say, it's a bleach, and you're not supposed to drink bleach.

One of Rivera's treatment protocols calls for giving a young autistic child an MMS enema every two hours for 72 hours around the clock.

Imagine giving your child any sort of enema every two hours for 72 hours.

Now imagine using bleach.

Sure, it would kill pathogens, but it might also kill your child, or your child might get angry and sleep-deprived and try to kill you.

I spent an evening Googling MMS, and I didn't find any reputable sources that advocate its use; if you come across one, please let me know.

In short: for the love of God, don't put bleach into your kid's digestive system. He's autistic, not infectious.


EDIT: I absolutely love how defensive MMS devotees get about this post. I publish all the criticism. Keep it coming!

Neurofeedback Therapy Update #2

Yesterday a friend told me she has been taking her son for neurofeedback therapy for the last two weeks, and she has seen notable improvements (I think for ADHD symptoms?) after each treatment. She asked how Ryan's doing with NT.

I have no idea.

We have days that are more or less challenging, but I don't know to what I should attribute those changes.

Nurse Brainley has asked me to keep a daily log in which I rate each of 10 problematic behaviors on a scale of 0 (not-a-problem-at-this-time) to 10 (significant-problem-dear-God-get-me-out-of-here). I have been looking for patterns, and I have found absolutely none.

Yesterday was fantastic. Ryan was happy to go back to school (I love extended school year!), let the nurse put the clips on his ears at NT without a struggle, didn't freak out over insignificant things, asked strangers their names, and tried to tell me about something that happened at school, using the name of a classmate. Zeros across the board.

The day before, everything was a fight. He whined all day that "I can not find" some toy that was right in front of him or that some random body part mysteriously hurt whenever he couldn't get his way. The only behavior that ranked below a 7 was "sleep difficulties."

So, is neurofeedback working for Ryan? It may be too early to tell. Some days he seems perhaps a bit more focused, a little more verbal. Stu and I have had a few moments in the last couple of weeks when we've stared at each other in shock that Ryan said/did something he had never done before. But we've always had those moments, because Ryan is always growing and changing, albeit more slowly than a typical child his age.

Two days ago Ryan revealed he can snap his fingers. Should I chalk that up to growing up, or to neurofeedback? My inner skeptic knows this is how snake oil salesmen stay in business: people love to connect dots even when those dots have nothing in common but proximity.

To be continued, three times a week for the next couple of months...

Monday, July 8, 2013

Alarming

Ryan is terrified by the sight of fire alarms because he is sure that if he touches one he will cause a fire, and he's a kid, so the urge to touch things is almost irresistible.

He has been avoiding handicapped bathroom stalls ever since that one time he pulled the string for the I-need-help alarm and set off a scary loud buzzer.

And every time we're in my car, he both warns me not to touch the OnStar button and begs to press it, "so there would be an emergency."

"We would not ring the alarm," he warns me, "or we would make da fire and be firemen."


I have tried to explain cause and effect - that a fire will cause the alarm to go off - but he either doesn't get it or doesn't believe me. I have also tried to reassure him that if there is an emergency, we can sound an alarm and firemen will help us, but in his mind when an alarm sounds an emergency situation breaks out and we magically transform into first responders, possibly with uniforms and equipment and extensive training.

Thursday, July 4, 2013

The trouble with fireworks...

It's not the noise. It's not really the crowds. It's only a little the staying up late.

The trouble with fireworks is that you have to get to the viewing venue early in the afternoon and then stay there all evening.

Ryan isn't yet at a stage where we can reliably stay in one place all day without a meltdown, a runaway, or a request to go home.

I know Ryan would love fireworks if we could just, you know, show up five minutes before they started blowing stuff up and then disappear when the show was over.

If arriving two hours beforehand were an option, we might, might, be able to get through that.

But that's never an option.