The Brookston Family Blog

I spent the afternoon at San Francisco's 21st Amendment Brewery near the ballpark in China Basin. I was there to interview founders Shaun & Nico for a profile which will be in the next issue of the Celebrator Beer News. 21st Amendment's five year anniversary is in August of this year.



Shaun & Nico in the front of their brewpub.

Many of you know about my obsession/hobby of collecting View-Master reels. I recently met through a mutual friend, a woman in the Netherlands, Bernadette, who not only collects View-Masters but also has a son who's autistic. Her son Coen is now 21 and lives in a care facility. He also has Tourette's Syndrome which is fairly common; or at least it's common that ASD is accompanied by some other behavioral/biological difficulty. My editor at the Marin IJ has a friend, Rick (who I've also met), whose son has Asperger's Syndrome (one of the disorders on the autism spectrum) along with Tourette's. Rick and his son live near Sacramento and things have been difficult for them.

I bring this up not only to introduce you to people we've met and have become important to us as we struggle with Porter's ASD, but also to highlight the fact that autism is everywhere these days. Ten, fifteen years ago it was something you rarely, if ever, heard about or you associated it only with Dustin Hoffman's character in Rain Man. Today virtually everyone I know or come in contact with knows or is related to at least one person who's autistic. Many of you, upon finding out about Porter last year commented to me that you knew someone else similarly afflicted. When I was a kid, a teen, even a young adult I knew not one person who was autistic. Not one. Yet a large portion of the medical community continues to pretend that this is not an epidemic. I was just forwarded yet another story in a medical journal "proving" that there is no epidemic and that it's simply that doctors are better at diagnosing autism now than they used to be. I find it infuriating that people who have been entrusted with the care of my child and your child appear to care more about saving their own skins, reputations, etc. than owning up to what's happening to an entire generation of children.

Robert F. Kennedy Jr. has an article in Rolling Stone and Salon.com that talks about the mounting evidence for the mercury-autism link (much of it is the same info that’s in David Kirby’s “Evidence of Harm”). ABC News (who gets a lot of advertising revenue from pharmaceutical companies) just last week pulled two interview/news pieces with RFK jr. and then after an outcry ran watered down versions of them with “experts” debunking him with no supporting evidence and without allowing any rebuttal. This is going to be a long battle before the medical community owns up to their monumental mistake. This will be considered the worst health blunder in American history and we’re currently exporting it to the rest of the world. Millions of thimerosal (it's the mercury, stupid) laden shots have been sent around the globe as part of the UN & US’s foreign goodwill vaccine program. China, to take one example, had virtually no reported cases of autism until a few years after we started sending them vaccines. Today there are over 1.8 million autistic children in China.

This new study released today, published by Blackwell Publishing, would likely explain that away by saying that suddenly doctors in China figured out what autism is and that’s the reason that going from zero to 1.8 million is not an epidemic. Their study, and the many before it that have said essentially the same thing, have been effectively refuted time and time again by the simplest of logic. If there is no epidemic and the number of cases is not going up but we are simply diagnosing the existent cases better, then where are all the adult autistic children who were not diagnosed when the diagnostic standards were, well sub-standard? By their logic, there should be thousands or even millions of undiagnosed autistic older children and young and even middle-age adults all over the place. Where are they? Every 150 people you meet should be autistic if the numbers have not gone up. Every football or baseball game you attend should have literally hundreds of autistic people watching alongside you. Have you seen them? I haven’t, because they’re not there. This is the medical community trying to reassure an increasingly worried public and pretend nothing is wrong.

I know I sound like a conspriacy nut, and many of you know I am often open to accepting a view different from the status quo. So I would encourage you to read Kennedy's article or, even better, spend the time to read Evidence of Harm. It's a fascinating portrait of what happens when the best of intentions go horribly wrong and those who caused it are either unwilling to or incapable of owning up to it. Read them and then make your own mind.

Anyway, back to the reason for this post. Sarah and I have met some wonderful people over the last year who are all struggling with a son or daughter with ASD (though it affects boys 4-1 over girls). Most have been warm, compassionate souls and the bond created between parents of autistic children remind me of some of my closest friends where a bond was created out of a difficult, shared experience (like Army buddies, bad jobs, and the like). And although I wish there was a way to undo the harm done to Porter so that I could wake up and he'd be exactly the same as other kids his age, I wouldn't want to change what a delightful, happy person he's become. Though there are challenges and setbacks, every day also brings new joys. It's hard to express how fortunate I feel to be able to be here for him and Alice every day. And I especially wouldn't want to change how it's matured me (stop laughing), strengthened my marriage and created so many close friendships.



My friend Bernie's son Coen when he graduated from high school, talking to his favorite musician, who called to congratulate him.

Hard to believe, but my Uncle Jim is a normal person. At least I thought he was. He's an elementary school teacher. But apparently he's also the Fonz.



In costume for a faculty play.

After school, Porter still wanted to ride the yellow spaceship and I remembered there was a kids spaceship ride at the mall. When I suggested going in the black car (which is what he calls our station wagon) he became very excited. So we loaded up the car and headed for Cape Canaveral (a.k.a. the Mall). But as soon as we got to the parking lot, Porter's focus shifted from yellow rockets to purple airplanes. I thought perhaps there was another ride I didn't know about since his grandparents take him to the mall far more often than I do, but that wasn't it. He made a beeline for the toy store and a shelf containing ... you guessed it, a purple airplane.



Playing with the Southwest Airlines purple plane while enjoying some pizza.



Alice helping us finish our pizza crust.

Do You Have a Dirty Mind? Check out this picture and post what you actually saw (no fibbing) using the comments feature of this post.

I'll confess what I saw after a few days so you'll have a chance to look for yourself first.

Porter slept in this morning (why is always on weekdays and never weekends?) and I had to wake him up for school. He was none too thrilled by the prospect and the only way I was able to pique his interest was to tell him he was going for a ride on a yellow spaceship. This excited him at once and he became energized about his perceived journey to the stars. Did I mention he's been watching Toy Story and Toy Story 2 a lot these days? Once he realized the deception as the school bus lumbered up the hill, Porter turned on the waterworks. Reluctantly he got on the bus, but was still crying as I waved goodbye. Damn, that didn't work.

Afternoon was spent out on the deck playing in the sandbox.



Porter put his construction crew through its paces building a mountain and then a road.



Alice helps.

Tuesday was once again time for play-based learning with Joanne.



Joanne and Porter talk airplanes.

Summer break is over (that was fast) and today Porter starts summer school.



Not terribly happy about returning to school.

In the late afternoon we asked Porter if he'd like to go for a swim. We obviously touched a nerve because he immediately stripped right there in the living room. And once upstairs to get on our suits, we could not move fast enought to suit Porter. But eventually we made it across the street to the swimming pool.



Porter and me in the swimming pool.



Porter, Sarah and Alice enjoy the hot tub.

After Uncle Tuck and Debbie left, Porter asked to paint so we got out his art supplies. He asked Sarah to whip up a new color for him; kangaroo brown.



Porter paints a kangroo.

Porter's favorite Uncle Tuck and his girlfriend, Debbie, stopped by today for a quick visit. Although it was hard to wrest Porter's attention away from Toy Story 2, he was very happy to see everybody.



Debbie, Tucker & Porter.

While Sarah started cleaning the kitchen in preparation for putting everything back, I played with the kids in Porter's room and the three of us actually played together. Porter had a rocketship puppet and I had a red airplane puppet. We flew them around the room flying them into Alice and each other, to the delight of all.



Alice tries to wrest control of the rocketship from Porter as she assumes a commanding spot on top of him.

Porter found some toy tweezers in the box under his bed and proceeded to tweeze Sarah's hair, though perhaps pluck might be more accurate.



Note some of Porter's artwork on the wall behind his bed.

Sarah and Porter played in his room this morning and in an unprecedented move, Porter actually wanted to clean everything off of his train table and put them away. Then he put his new train layout on the table and wanted to place certain other toys there. Only he knew the plan as he decided which would be allowed back on the table. Once finished, he then insisted that Sarah take a picture of the new layout.



The proud builder.



A close-up of the jungle parking lot.



Happy boy.

I was hoping this post would be called Walking Tall, but my efforts to get an mpeg of Alice walking met with dismal failure. But I did manage to get this picture of her standing in the open.



Alice, outstanding in her field.

Today Porter was really swinging at his occupational therapy session.



Eager to get started.



Back and forth, then side to side. Porter was learning to swing himself here.



Swinging around in the basket.



Alice plays cheerleader for her brother.

Yesterday Porter got another new train set, this one is the Silver Line from Radio Shack. And even though I can't seem to make it work properly, Porter's still having a good time playing with it this morning.



All Aboard the Silver Line.

We're in the home stretch now, today should be the last day as only minor things remain to be done, such as put in the light fixtures, child safety locks, and some clean up. Woo-hoo, we'll have our kitchen back by the end of the day.



Day Nine.

I'm sure of the reasons why retreiving this particular piece of track from the box was such a cause for celebration, but celebrate she did.



Alice celebrates her triumph!

Given that Sarah has been burned out on pizza this week which has reduced our choices for take-out while the work on the kitchen is being done, the only way for me to eat pizza was to order one for lunch. I ordered a thin crust pure bliss (that's canadian bacon and bacon) today. I offered my crust to Alice to gum, since she likes toast and bread. She ate the pizza crust then came back for more. She essentially hovered over me noisily until I gave her the next crust. She took to pizza crusts like a baby possessed.



Urp. GIVE ME YOUR CRUSTS! NOW!

Porter's known his ABCs for a few months now, though he doesn't always say them from start to finish without straying or stopping, although it has happened before. Over the last few days he's been watching both They Might Be Giants' Here Comes the ABCs and Sesame Street's Do the Alphabet. Today I caught Porter making it from A to Z on video. He was playing with this plastic microphone he got in his stocking last Christmas.



Here's a Quicktime movie of Porter reciting his ABCs. You can either download the movie to your desktop or just click on the link to play it in your web browser (assuming your web browser has the quicktime plug-in installed).

When Porter was born, his hair was more white, a true towhead. When Alice was born, her hair had a reddish tint to it, like a strawberry blonde. Well now that almost a year has gone by, her hair has turned more blonde while Porter's has darkened slightly. In this picture, it now looks as if their hair color is the same, doesn't it?



In last night's bath, their hair color now looks virtually identical.

We've been concered about Porter's hearing almost since the time he was born. Even as an infant he rarely responded to even the loudest of noises. Clap right behind his head and he wouldn't even flinch. We had his hearing checked when was only about nine weeks old and were told it was okay. Then last year when we were going through the diagnostic procedures that led to Porter's diagnosis of autism, his ears were checked again. On that occasion, Porter was just getting over his latest ear infection and they saw fluid in his ears. His hearing test came back as borderline okay and they put its being so close to the edge down to the ear infection and recommended a further test. Then a couple of months ago an ear test at school further revealed some issues with Porter's hearing and further testing was again recommended. So we spoke to Porter's pediatrician about it and she sent us to Marin General for another test. Yet another ear infection pushed that back until today when we finally had his second hearing test.



This was taken just after the testing was completed.

What they did during the test was put headphones on Porter (which he absoluetly hated but was a trooper, nonetheless) and pipe sounds into one side or the other. Porter was given a colored wooden cylinder to hold up to his ear. When he heard a sound, he was then to put the cylinder down into one of the peg holes on the board. Then after that part was completed, she took a picture of the inside of Porter's ears. His left ear checked out just fine. His right ear, on the other hand, still had fluid in it. So now it's back to his pediatrician to see what can be done about what appears to be chronic fluid in his ear. Given that we've noticed, and his teachers have noticed, that he's often a step behind in songs and other choreographed group activities it seems likely that fluid in his ears cannot be helping the situation of his slower response time.

For reason we don't fully understand, a few weeks ago we finally got Porter to eat chicken nuggets by calling them dinosaurs. But he also seems to have figured out that they're chicken, because today he asked to have "chicken dinosaurs" for lunch. Since we have no kitchen yet, and also because we had to go out this afternoon anyway for a hearing test, I took the kids to Wendy's, which was on the way to the hospital. I went through the take-out window and was going to eat in the parking lot, but Porter was most insistent that we eat "inside house," as he put it. So we went inside to eat our chicken dinosaurs and freedom fries.



Given all the recent evidence indicating that dinosaurs were most closely related to birds, perhaps Porter is onto something after all. We may not know what dinosaur meat would taste like but it now doesn't seem too far-fetched to say it would taste just like chicken.



Of course, Ketchup figured heavily in the meal.



After all, you need something to dip your fries in.

I've often called Porter a trainhead because of his obsession with trains, but this time I mean it literally.



It may be hard to see, but the white puffy stuff at Porter's forehead is steam escaping from a steam engine, which is what he's wearing on his head.

After Porter got home from his escape with Grandpa, he lounged on the sofa watching Do the Alphabet, hosted by Big Bird.



Yeah, I'm cool.

Day two of summer vacation and day seven of the kitchen remodel was another dull day confined to the living room. Porter escaped with his grandfather after his language therapy session with Joanne. Alice and I, on the other hand, just rattled our cage.



Porter shows off his rocketship PJs as his need for a haircut becomes more and more apparent.

More color appeared today as we get visibly closer to the finish line.



Day Seven.

Porter, when told Grandpa was coming, begged to have his shoes put on. He then sat by the window and waited ... and waited ... and waited until Grandpa finally came and there was much rejoicing.



I have got to get out of this place.

For the first time I can remember, I've been highly anticipating Father's Day this year. First there was the mystery of the green package that became the silver present that Porter was so excited about. Then there was the enigmatic "appointment" that Sarah and the kids went to yesterday morning and then Sarah left on an unknown errand in the afternoon while the kids were napping. So I went to bed last night like a kid on Christmas Eve, filled with impatience and high hopes for the morning.



Though sleeping in until 8 was a treat, Porter could hardly contain himself and eventually woke me up.



First there was the card that "Scrapbooking" Sarah and the kids made for me.



Then I discovered that the mysterious appointment was to have their picture taken as I unwrapped the results.



Finally, it was time for the piece de resistance, the green box.



It turned out to be a mug with Porter's foot print on it. Very cool.



The foot mug.