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About Us

Welcome to the Brookston family blog. We'll post updates here on what's going on in our part of the world, and especially with our son, Porter, who has been diagnosed with some form of autism. Our hope is that this blog will help us deal with all the issues we'll be facing and keep our friends and family informed as well.

Jay B.

Sarah J.

Porter Brookston
born September 10, 2001

Alice Brookston
born July 7, 2004

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October 13, 2006

An Overbooked Benefit for Autism Education!

Categories: News, Humor, Autism — J @ 11:12 pm

I already love Jon Stewart, but here’s one more reason. He’s hosting a live benefit show on Comedy Central called The Night of Too Many Stars, which is a benefit for autism education. I’m not sure why Jon Stewart or someone at Comedy Central chose autism as their charity, but I’m certainly pleased they did.

The show is this Sunday night, October 15, at 8 p.m Pacific (7 p.m. Central). It’s Jon Stewart, Elvis COstello is performing, and it’s for a good cause. Join us in watching the show.

Here’s what the website has to say about the show:

Comedy Central’s first live, on-air and online special event, Night of Too Many Stars: An Overbooked Benefit for Autism Education will be held at New York City’s Beacon Theatre on Sunday, October 15. The comedians will perform to raise money to benefit education and research programs for autistic children and adults.

Here is the complete list of comedians and performers:

Hosted by: Jon Stewart

Will Arnett
Jack Black
Steve Carell
Kristin Chenoweth
Stephen Colbert
Elvis Costello
Jimmy Fallon
Will Ferrell
Will Forte
Fred Armisen
Ricky Gervais
Norm Macdonald
Christopher Meloni
Oscar Nunez
Mike Myers
Bob Odenkirk & David Cross
Amy Poehler
Paul Rudd
Borat Sagdiyev
Adam Sandler
Amy Sedaris
Martin Short
Tony Sirico
Ben Stiller
Triumph the Insult Comic Dog
Brian Williams

• • •

August 4, 2006

Insulting I.E.P.

Categories: News, Porter, Autism — J @ 10:33 am

We weren’t expecting much at yesterday’s I.E.P. meeting but for most of the meeting, things seemed to be going pretty well. I think we had almost been convinced that kindergarten might be okay for Porter this fall, if only we could work out some individual instruction for Porter to help with his pragmatics and social skills so he might be able to finally catch up to his peers. The school district representative was talking in glowing terms about his kindergarten programs and almost sold us on it.

But then in the last reel, as he was putting things down on paper, he offered us two-20 minute individual sessions of speech therapy per week. When you consider how things work in the real world, that’s maybe 10 minutes of actual instruction out of a total week’s class-time of just over 26 hours, or 2.5% of his weekly time in school (1.25% in real world terms). Sarah said afterward that she felt like an overworked waitress who’d just gotten a ten-cent tip. It was insulting. Especially because we really thought we’d made some progress. To have the rug pulled out from under us like that was infuriating.

Porter’s old teacher offered to come in and observe Porter regularly because she says she feels so strongly that Porter should not remain in the class he was in last year. And while we agree, we’re not entirely convinced that kindergarten is the right step either, especially since they’re so damnably unwilling to offer him any individualized instruction. We want to believe her and we will try to meet with her alone next week to discuss it. The fact that there’s only her old class or kindergarten — and nothing in between — is likewise frustrating, especially when you consider that federal law mandates “appropriate education.” I can’t believe that Porter is the first kid ever caught between these two worlds. But to the school district “appropriate care” appears to mean whatever they already have in place and don’t have to spend additional money on. It seems odd that every single time, both for us and other parents we’ve spoken to, whatever classes they already had in place were in their “expert opinion” just perfect for every kid in the school district. How convenient.

But as to our school district rep., he was obviously perfectly cast in the bad cop role. It’s very obvious that they’ve all been trained in negotiating techniques designed to manipulate parents. We know for a fact that Marin Country offers such classes for their teachers and administrators because we’ve come across the course titles online. That fact that they are unwilling to admit that their real concern — and perhaps their only concern — is money and their budget makes the entire process dishonest. Our agenda is obvious and out in the open. We don’t want to break their bank, we don’t want anything unreasonable, we simply want what’s best for Porter. Their agenda, on the other hand is couched in mystery as they pretend to care so deeply for Porter’s welfare and then insult us by denying him anything we ever ask for. They take a very “take-it-or-leave-it” approach. Throughout the meeting, Sarah had been talking about one-hour sessions three times a week. They remarked that they only had a speech therapist there two times a day. So then when they offered us a mere 20 minutes twice a week, I thought Sarah was going to come unglued. I was the calm one, if you can believe that. When Sarah used the “L” word — legal — you would have thought she’d attacked him with a knife he recoiled so fast with mock anger and indignation. It’s so frustrating that they’re playing a game with Porter’s future. All the techniques Sarah sees in her daily work are there on display in these meetings. But instead of a few million dollars here and there being at stake, it’s a child. It’s our child. It’s Porter. They’re using negotiating techniques to play a game with his future. I don’t believe in hell, but if I did I hope there’s a separate wing for people who mess with kids.

Perhaps some might say because it’s our child that we are incapable of perspective, but I honestly believe that what we were asking for was not unreasonable. We asked for three hours of individual instruction a week (about 11.4% of his class time), they offered us 40 minutes (2.5%) and then said “that’s what it is” in effect saying take or leave it fully expecting, I presume, that we’d cave in and jeopardize our son’s future. Obviously this is an emotional issue for a parent, but you want to believe that your child’s school cares about his future, too. When their actions so starkly show that they really don’t, it’s very disheartening and depressing.

What happens next is anybody’s guess. But I think we’ll be using the “L” word a bit more now that they’ve essentially left us no choice.

• • •

August 3, 2006

Porter’s Future

Categories: News, Porter, Autism, Opinion — J @ 9:51 am

This afternoon we have another I.E.P. meeting scheduled with Porter’s school to determine what he’ll be doing school-wise this fall. We don’t expect much will come out of the meeting except some posturing on both sides. They think he should start kindergarten, primarily because they don’t want to pay for another year of special education We don’t want him to start kindergarten until he’s six, since studies show that boys do better when they start school later. He already has one handicap, so we want to give him every chance to succeed we can, and having him wait to start kindergarten seems an obvious decision. The school district has said he could simply repeat kindergarten, but we want him to have individualized teaching that addresses the areas in which he’s not yet caught up to his peers and they continue to not offer anything individualized for Porter whatsoever, despite the fact that federal laws says they are bound to provide an “appropriate education.” And while reasonable people might differ as to what that means, it certainly does not mean just offering whatever general class they happen to have and nothing else, which is literally all they’ve done for the last two and half years. Not once have the suggested anything actually individualized, despite the fact that the meeting we’re going to will discuss his “Individualized Education Plan.” I’ll let everybody know the outcome, but don’t expect much. I know I don’t. This is just such a frustratingly maddening process that it’s very hard not to be disheartened. I believe that for the most part his teachers want him to do well and do what they can to help him, but it’s getting harder and harder to believe that the school district and county through the administrators and official representatives have any real concern for anything Porter except how it effects their budgets. And that may be the most depressing thing of all.

• • •

July 19, 2006

J-Mac Wins Espy Award

Categories: News, Autism — J @ 8:24 am

Regular readers may recall the story of Jason “J-Mac” McElwain, the autistic high school senior from Rochester, New York, who scored 20 minutes in the final four minutes of his team’s last game. He had been the team manager and for his final game the coach told him to suit up and then played him in the waning minutes of the game.

Sunday night he was again a winner as J-Mac was on hand with his family to pick up an ESPY, the ESPN awards, for “Best Moment” beating out his idol, rapist Kobe Bryant, along with “George Mason University’s NCAA Final Four run and 13-year-old Dakoda Dowd’s LPGA appearance for her mother, who has terminal bone cancer.” The Rochester Democrat and Chronicle carried a story about it and Wayne Drehs of ESPN had a nice column from June about the story’s impact. Rumors abound that a film or at least TV-movie of J-Mac’s story is in the works.

After the big game, J-Mac on his teammates shoulders.

• • •

May 28, 2006

New Study Strenthens Link Between Autism and MMR Vaccine

Categories: News, Autism, Opinion — J @ 10:51 am

The UK Telegraph has a story today that a new American study appears to confirm findings by Dr. Andrew Wakefield in 1998, and others in later years that a link exists between the MMR vaccine and autism. A government study last years was supposedly unable to reproduce Dr. Wakefield’s findings, but then our government doesn’t want to find a link so virtually any study by our government is tainted, in my opinion, especially given their intimate ties to big Pharma.

So it likewise comes as no surprise that this new American study has been reported first in the British press rather than our own, since the mainstream media is likewise in lockstep with and beholden to big business.

From the article:

American researchers have revealed that 85 per cent of samples taken from autistic children with bowel disorders contain the virus. The strain is the same as the one used in the measles, mumps and rubella triple vaccine.

The findings will spark fresh concern about MMR, because they back theories of a causal link between the jab, autism and painful gut disorders suffered by a number of autistic children.

One theory is that the virus passes through the gut, causing damage, and into the bloodstream, from where it is able to attack the brain.

Research to be presented this week in Montreal, Canada, provides fresh evidence that the measles virus is present in the guts of autistic children. Dr Stephen Walker, of the Wake Forest University School of Medicine, North Carolina, studied children with regressive autism and bowel disease. “Of the handful of results we have in so far, all are vaccine strain,” he said.

On a side note, almost every time I post information from one of these growing number of studies that support the vaccine or thimersol link, some so-called private individual will post a comment trying to discredit the findings, whoever did the study, or both. Perhaps some of these are legitimate, but I can’t for the life me understand why an individual would devote himself, unasked and unpaid, to defend big business and defend deceptive practices by our own medical community. Usually they have a blog set up for no other purpose than to discredit this research and they’ll be some blather about just wanting to set the record straight or not have false information clouding the dabate. Please, pull the other one and see what comes out. I don’t trust them, whoever they really are. If they really cared about this issue and the kids effected by it, these blogs would also include efforts to get at a different cause, not just to discredit the one they don’t like. If the mercury hypothosis is wrong, then open testing and research should reveal that in due course. Seeking to avoid even addressing it — which is the net results of such tactics — does nothing to instill any confidence in the people entrusted with the health of my children. So please, if you’re one of those people reading this, please keep your comments and your agenda to yourself and leave me alone to express my opinions. If you’re a normal human being, by all means I’d love to hear from you.

• • •

May 7, 2006

Time Magazine Tackles Autism

Categories: News, Autism — J @ 5:51 pm

This week’s Time Magazine cover story is about Autism. Actually it’s the May 15, 2006 edition but it’s already online. If you’re not a subscriber you can still read the stories online, but first you’ll have to sit through a short advertisement before being able to read the full story. There’s a main cover story entitled Inside the Autistic Mind and two shorter pieces: A Tale of Two Schools and The Most Difficult Decision of My Life. The article barely mentions thimerosal, which I found a little odd since it’s at least the most controversial of the origin theories. But at least the mainstream media is acknowledging autism’s existence again, however briefly.

Newsweek did a story last year when the parent company owner’s grandchild was diagnosed with autism. Now this year Time is having a go at it. I’ll be interested to learn what Time’s reason was.

• • •

March 25, 2006

Autism Podcasting

Categories: Info, Autism — J @ 4:39 pm

I got an e-mail from a Michael Boll, who is the host of a podcast (Internet Radio Show) about autism, called Autism Podcast. For those of you not familiar with podcasting, it doesn’t actually requite an iPod (although you should get one anyway, they’re terrific). They’re essentially files of radio-like broadcasts that can be downloaded and listened to on an computer, iPod or other mp3 player whenever you want. If you want more detail about podcasting, try the Wikipedia entry. It’s like he’s just getting started and has done eight shows so far, plus some shorter ones with tips from other parents. He’s asked for my assistance in helping to promote the show and I’m happy to do what I can. Anything that provides grassroots information from parent to parent is a good thing in my book.

• • •

March 23, 2006

UC Davis Study Shows Thimerosal Link in Mice

Categories: News, Autism, Opinion — J @ 1:13 pm

Thanks to my mother-in-law Ruthanne for this one. Today’s Contra Costa Times, a small local paper in the East Bay, had an article today by Sandy Kleffman about a new study conducted at UC Davis, near Sacramento, that appears to show a strong link between mercury — in the vaccine preservative thimerosal — and immune system dysfunction in mice. No doubt for fear of being ostracized by their colleagues and the medical establishment at large for publishing the wrong conclusions, the authors of the study were careful to point out that their findings did not conclusively show any link and that many questions remain to be answered. But it was nice to see yet another study that at least doesn’t discount that link outright. Once enough of these small victories pile up, it will become increasingly difficult for the government and medical establishment to keep stonewalling and lying about this issue.

The article also mentioned offhandedly something I didn’t realize, which is thimerosal is still in some “ear drops, nose drops, skin creams and cosmetics, as well as adult diphtheria and tetanus vaccines.” I’m going to have to read those labels more carefully.

• • •

March 22, 2006

Porter’s First Report Card of 2006

Categories: News, Porter, Autism — J @ 8:14 am

We recently received the evaluation of Porter’s goals for the first quarter of 2006. These are the specific goals that we set last November at his annual I.E.P. There are four goals laid out, three of which were created by his school therapist and the fourth which we all agreed to add at the meeting. The four are as follows:

Porter’s IEP Goals & Objectives 2006

  1. Reciprocal Conversation
  2. Basic Question Form Processing
  3. Sharing
  4. Reciprocal Play (turn taking)

In each instance, an increasingly challenging goal is then set out for him to meet each quarter. For example, he may be expected to do something once a day the first quarter, twice a day the second, and by the fourth quarter perhaps five times a day, usually with a certain percentage of accuracy, as well. Each quarter we get a copy of the original goals with codes on them about how he did at meeting each one and why not, if he didn’t meet a goal.

He met his first three goals but the fourth was not graded because it was added late. For reciprocal conversation, he’s met his goals for the first three quarters already and has even substantially met the goal for the fourth quarter. That makes sense, as we’ve seen an enormous change in his conversational skills. Anyone who hasn’t seen Porter for a while is generally surprised to see just how talkative he’s become. I think we may need to reevaluate this goal and raise the bar on what he needs to accomplish in this area. He met his second goal and appears to be making good progress toward the next quarter’s goal, as well. The third goal was also met, not only for the first quarter but the second quarter’s goal, too, with substantial progress toward the third and fourth quarter goals. This, too, may need to be reevaluated. I say this because if he reaches the goals seemingly too fast or too easily, then it’s obvious we need to challenge him more. We’ll never know how much he can do unless we gently push him to achieve ever loftier goals.

But the overall sense of things is that we may have turned a corner. Porter seems to be bursting out with new understanding, new words, and new concepts every day. He’s constantly surprising us with what he’s picking up and what he appears to be retaining. He’s definitely started his “kids say the darndest things” phase so we’re laughing quite a lot these days, which is something of a relief.

• • •

March 21, 2006

Two New Studies Link Mercury to Autism

Categories: News, Autism, Opinion — J @ 5:58 pm

In the last few days I’ve seen two different studies that appear to further confirm the link between mercury and autism. One involved environmental mercury and the other was strictly thimerosal in vaccines. One was reported in the newsletter of one of the advocacy groups I subscribe to and the other I got from Kit, my librarian sister-in-law.

The first was reported in Health Sentinel online. It’s a new study by the Geiers, who have previously published studies surrounding this question and have been vilified for their efforts by the most obvious and hideous smear campaigns imaginable. Every time they publish results, the medical community spin machine goes into overdrive trying to discredit them with everything from “they’re not the right kind of scientists” to it wasn’t published in a “reputable” journal. Frankly, the fact that they’re attacked so unceasingly and vehemently lends them a certain credence, in my mind. Me thinks the medical establishment doth protest too much.

From the Health Sentinel report:

A study published in the spring edition of Journal of American Physicians and Surgeons, examines the connection between vaccines that contain thimerosal and autism. The authors of the study are David A. Geier, B.A. and Mark R. Geier, M.D., Ph.D. According to the authors the study was thoroughly reviewed prior to publication. “Our manuscript underwent blinded peer-review by three different peer-reviewers including a bio-statistician/epidemiologist prior to its publication.”

Notice the attention paid to its peer-review prior to publication. That’s there to address the smear campaign from the get go. You won’t see that sort of mention from other published studies, because they’re not as likely to be attacked as anything the Geier’s publish.

The study itself confirms the same thing as their previous ones, which is that there is a strong link between the preservative thimerosal and the risk of autism. At this point it’s been pretty well documented a number of different ways, but the medical establishment refuses to accept this or any study that reaches such a conclusion, so much so that if you’re not paying attention to this as closely we are, since we have a vested interest in it, you could be forgiven for believing the opposite is true.

But read the whole thing, there’s some very interesting historical perspective given in the article and in particular, this little nugget:

A 1948 article in the journal Pediatrics opens with, “Inflammatory reactions involving various parts of the nervous system following injections or various sera or vaccines have long been known”. In that paper they discuss 15 instances in children at Boston Children’s Hospital that developed “acute cerebral symptoms within a period of hours after administration of pertussis vaccine.”

If you missed the significance of that, allow me to hit you over the head with it. In 1948, a leading pediatrics journal reported that doctors were already seeing a link between vaccines and developmental problems in children. That’s only eighteen years after thimerosal was first used in vaccines and less than ten since autism had been identified. But our medical establishment still insists no such link exists. The further along this path I go, the harder it is to place any faith whatsoever in anything doctors say. They’re just as human as you and I, and it appears in many cases they’re just as stubborn and ignorant, as well. If so many are so willing to lie and cover up responsibility for this travesty, how can I know when they are telling the truth? Are they even capable of it anymore or are their souls so rotted that they no longer can tell the difference?

The other study is from Texas, where they studied environmental mercury and also found a strong link between mercury and autism. In fact, they found it was 61% more likely that a child would become autistic for every half-ton of additional mercury released into the environment. Sheesh. That certainly supports the Bay Area problem, which has a higher incidence of autism than most of the rest of the country. The San Francisco Bay Area, not coincidentally, was once home to the world’s largest mercury mine and if you look at map of abandoned mercury mines, the area is literally thick with them.

Here’s the abstract from the Texas study:

Health & Place 12:2, 203-9 (2006)

Environmental mercury release, special education rates, and autism disorder: an ecological study of Texas.

Palmer, RF, Blanchard, S, Stein, Z, Mandell, D and Miller, C

University of Texas Health Science Center, San Antonio Department of Family and Community Medicine, 7703 Floyd Curl Drive, San Antonio, Texas 78229-3900, USA. palmer@uthscsa.edu

The association between environmentally released mercury, special education and autism rates in Texas was investigated using data from the Texas Education Department and the United States Environmental Protection Agency. A Poisson regression analysis adjusted for school district population size, economic and demographic factors was used. There was a significant increase in the rates of special education students and autism rates associated with increases in environmentally released mercury. On average, for each 1,000 lb of environmentally released mercury, there was a 43% increase in the rate of special education services and a 61% increase in the rate of autism. The association between environmentally released mercury and special education rates were fully mediated by increased autism rates. This ecological study suggests the need for further research regarding the association between environmentally released mercury and developmental disorders such as autism. These results have implications for policy planning and cost analysis.

If you want to read more about it, here is an article at Science Direct.

• • •

March 20, 2006

One Small Step

Categories: News, Autism, Opinion — J @ 7:52 am

The National Autism Association (NAA) is calling it a “Landmark Lieberman Letter” with a headline that reads “Congress Speaks Out on Thimerosal.” I know they’re trying to put a positive spin on every small gain but at some point they need a little perspective. What were they talking about? Senator Joseph Lieberman and seven other Congresspersons sent a letter to David A. Schwartz, MD, the new director of the National Institute of Environmental Health Sciences “urging” (you know, asking) him to look into the thimerosal/autism link. How bold, a letter. Now that’s decisive leadership. Yawn.

They also lauded the Senator for language inserted into a Labor/HHS appropriations bill “recommending a committee be formed to evaluate the need for independent research of the Vaccine Safety Datalink, which has never been fully accessed by anyone outside the CDC.” Now I’m sure that’s a necessary step, but I have a hard time getting worked up over them “recommending a committee be formed.” Ooo, a committee. That’s telling ‘em. And actually, it’s just a recommendation to form a committee, which just as easily can — and probably will — be ignored. I realize that it will be years, if not decades, before the truth comes out, whatever it is, and I think that’s what pisses me off the most. We won’t find out anything meaningful until all the people involved at the CDC and other agencies have either retired or passed away lest they have to face the responsibility of poisoning an entire generation of children. If they did nothing wrong, why not open it up to scrutiny so the world can see they’ve done no harm? I think we all know the answer to that question, especially them, and it’s their lack of willingness to come clean that makes them evil, in my opinion. I don’t believe — or at least I don’t want to believe — that the government’s medical doctors and scientists intentionally caused the autism epidemic, but their continued unwillingness to admit any mistake and honestly face not only the cause, but also what to do next, makes their earlier mistakes, however inadvertent, more and more malevolent. Instead of protecting the public they’ve spent their efforts protecting themselves and are losing what’s left of their souls in the process.

From the NAA press release:

A letter made public this week from eight members of the House and Senate to the National Institute of Environmental Health Sciences (NIEHS) is making headlines, and with good reason. After years of hard work from parents across the country to focus Congressional attention on the thimerosal/autism link, this may finally become a reality.

The offices of Senator Joseph Lieberman and several other lawmakers managed to pass important language as part of a Labor/HHS appropriations bill recommending a committee be formed to evaluate the need for independent research of the Vaccine Safety Datalink, which has never been fully accessed by anyone outside the CDC. A growing number of parents are convinced that the CDC will never be able to appropriately research the VSD because of the agency’s conflicts of interest and possible culpability in allowing an entire generation of children to be overexposed to mercury through vaccines.

The letter, addressed to NIEHS director, Dr. David Schwartz, is forceful in urging that the NIEHS direct its efforts towards finding answers for the one in 166 children now diagnosed with autism. This is encouraging news for us all, and a testament to the fact that Congress is listening to us. We will all need to be keeping watch on this situation to see that it receives and maintains the attention it deserves. The full letter is available here: http://www.a-champ.org/Congressionalletter2-22-06.html

I’m starting to think the NAA, and perhaps many of the autism advocacy groups, have been around long enough that they’re becoming part of the establishment they originally sought to hold accountable. One of the things I took away from reading David Kirby’s Evidence of Harm was what grassroots, rebel, in-your-face the original advocacy groups made up of pissed-off parents of autistic kids demanding answers really were. But it’s hard for anyone to sustain that level of rebellion for very long. That’s why dissidence rarely succeeds, it doesn’t have the resources and wherewithal that the rich and powerful enjoy. That’s why most movements for social or political change usually just peter out as their members age and give up. And I’m beginning to believe that’s what is happening here. I’m sure any of the advocacy bigwigs who read this would be aghast, or worse, at my questioning their commitment, especially the ones who were in this fight from beginning. But it’s not their commitment to the fight, it’s what has happened to the fight itself that I see as the problem. This is, obviously, just one observer’s point of view, and one who is no doubt somewhat myopic since we came to the fight so late. But what I now see is slick websites, polished press releases with their own spin, for chrissakes, taking official positions on issues, essentially playing the same political game that the government is and in some cases even using underhanded propaganda for sympathy, support and money. It’s obvious nobody can agree on what to do or the best approach to do it since there are so many organizations. This, of course, works against a real solution since it dilutes what small resources there are, both in terms of people and money. I’m not saying anybody sold out, but I am skeptical whenever an organization for change begins behaving like the bureaucracy it’s trying to change.

• • •

March 16, 2006

J-Mac: Autistic Basketball Star

Categories: Autism, Opinion, Movies — J @ 2:12 pm

Sarah sent me this piece a couple of weeks ago and while she’d told me about it, I hadn’t had a chance to watch the video or read the actual story. By now, perhaps, you’ve already seen it but since I’ve been asked to write an Op-Ed piece for our newspaper about it, I thought I’d share it with everybody just in case some of you hadn’t heard about it or seen it. The story is about Jason McElwain, a 17-year old high school senior from Greece Athena High School near Rochester, New York. J-Mac, as he’s affectionately known, has Autism Spectrum Disorder though he’s been characterized as high-functioning. For the past four years, he’s been the team manager of the high school basketball team, which means he fetches towels and water and tries to improve team morale. On the last game of his high school career, his coach had him suit up for the game — not with an eye toward having him play — but just to give him a chance to see what it was like to be in uniform and feel like a player. Toward the end of the game they found themselves up 16 points and the coach changed his mind and decided to put J-Mac in the game with just four minutes left on the clock. He took his first shot, a long one from the corner of the court — missed. A second shot from beyond the free throw line also missed. The coach was starting question his decision and praying that he’d at least make a basket. But then J-Mac drained a three-pointer. The crowd went wild. Then he hit another three-point shot … and then a third. The crowd and his team grew increasingly excited and both his teammates and the audience were jumping up and down enthusiastically. By the time the game was over he’d scored 20 points (6 3-pointers, tying a team record, incidentally, and 1 2-point basket), including hitting his last three-pointer at the buzzer.

It’s pretty inspiring to watch and as many people have commented, if you didn’t see it with your own eyes, you might believe some Hollywood screenwriter had made the whole thing up. His story’s been compared to the Notre Dame football movie, Rudy, but that’s about a kid who was simply too small to play college football. To my mind, J-Mac had a lot more to overcome than Rudy (not to take anything away from his story) because being autistic is not really comparable to just being too small but having all your other faculties intact. It got autism quite a lot of attention, which is great, and believe or not Hollywood really is interested in filming his story. Apparently, his family has been approached by around twenty-five production companies including Disney, Warner brothers and some independent documentary filmmakers. Here’s the CBS story on J-Mac. But to get the real emotion of the story, watch the video on Google Video.

I searched around today about the story and there hasn’t been much follow up but it will certainly be interesting to see what comes of it. Almost anything that puts autism front and center in the national press is a good thing because we could certainly use more awareness about it despite it being an epidemic. Surprisingly, however, I did stumble upon several forums where scores of comments had been left, most of them unsurprisingly positive. What shocked me a little, however, was that there were any negative comments, but there were. Before you read on here, be sure to watch the video first and see if you can find anything negative to say about this story.

The negative comments seemed to fall into three broad categories. First, some people said “so what” dismissing it as no big deal, though in some cases the language was a bit more blue. Second, some people remarked that he sounded and looked “retarded” with a “high forehead.” And third, several commenters responded to others trying to defend J-Mac by saying things like “don’t pretend you’d want an autistic kid” and “would you want him to be the father of your kids.” Now I know most, if not all, of these comments are the products of ignorance and immaturity. When you see how they’re written and as you watch the dialogs unfold you quickly realize that they are from people who find daytime talk shows too intellectually challenging. I’m not really trying to be flippant here, I really was quite amazed by how low the level of literacy and discourse was. I’m pretty sure many of them were teenagers, but that could just be my own bias.

But I was also struck by how utterly insensitive many of the remarks were and the ignorance that was so amply demonstrated about what autism is and how it affects people. To me that was remarkable. Obviously, we knew little about it before Porter was diagnosed and we, of course, have since educated ourselves about it as only two anal-retentive geeks could, by reading everything we could get our hands on. But even what little we did know was several levels above the discourse I read today. So what I now wonder is whether or not this is due to the media’s utter lack of appropriately covering this epidemic on a regular and continuing basis. Don’t get me wrong, I’m grateful for what coverage there is but you’d think that a disease that afflicts one in every 166 people might command a bit more attention than it currently does. Or is it simply a more pervasive problem that people are becoming more and more happily ignorant. Certainly very little in our society celebrates intelligence: not sports, not entertainment, not television, not politics and not our educational system. Is this the effect that paying so little attention to schooling has produced in the last twenty or thirty years. Or have I simply become the next generation of curmudgeons complaining about these damn kids today? How can one even tell the difference in a culture that so glorifies stupidity?

Now I realize I’ve drifted off point here, that’s one of the dangers of writing extemporaneously and thinking in tangents, which is how my mind tends to operate. Anyway, I’ve got to figure out how to attack this Op-Ed piece since it’s a great opportunity to educate people about autism. I think this story does highlight some very positive aspects of autism that bear reinforcing. For example, it clearly shows that many autistic people can create social bonds and be productive members of society with the proper support and guidance. That this kid had a basketball coach willing to give him a chance speaks volumes about how important those relationships are. That he was able to maintain friendships with jocks also says something important about how people behave when faced with real situations rather than as stereotypes. I certainly have a prejudice against many jocks, and I was prepared to believe that such a group would have a great deal of difficulty accepting an autistic kid without making fun of him. Of course, he’d been in the position of team manager for four years. It would be interesting to know how long it took before they accepted him. High school boys are not exactly known for their compassion and understanding, at least not when I was in high school and I doubt much has changed on that score. Anyway, take a look at the story, please. Watch the video. What do you think about it? What do you think I should emphasize about autism and this story for my op-ed piece?

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March 1, 2006

I.E.P. Results

Categories: Photos, Porter, Autism — J @ 10:54 am

Today’s IEP Meeting went relatively okay, with us agreeing to his move to the new classroom formally. The main sticking point about it was that summer school would be only four weeks instead of seven. Their main philosophy seems to be that since he’s done so well with his learning so far, let’s give him less since he doesn’t need it any more. We have deep disagreements with that philosophy and believe that if a certain level of training has brought about positive changes, the last thing you want to do is reduce it. We are adamant that the intensity and time Porter is in school should remain the same or increase. These are the critical years when the most benefit can be realized from special schooling. So the last thing we want to do is give him less schooling. To us, the ultimate goal will be if he can start kindergarten at age six without the need for special assistance. So we feel we must do as much as possible between now and then to give the best shot at succeeding in life. After much haggling we finally compromised that he’s spend the first four weeks in his regular summer school class and when that was over, he’d then be in his old classroom for the remaining three weeks, but with some responsibility so that he can continue to be challenged.

The other main disagreement is that the school teachers and administrators are chracterizing Porter as no longer severely handicapped. This is worrisome because it implies that services he may need later could be withheld by invoking this designation and saying he’s no longer entitled to them. It’s very difficult to know if we can trust anything they tell us, and that’s a big problem. His teacher’s certainly seem sincere and appear to want what’s best for Porter, but we also know that they’re under certain pressures for the future of their careers not to be too enthusiastic when it conflicts with budgetary and other similar concerns that the administration has. So do they tell us what they really think in these meetings with their bosses in attendance? It’s hard to believe they do when we’ve had at least one instance when what they told us privately was different from what was said (and not said) in a previous IEP meeting.

They claim that based on his current behavior in class that he’s no longer severely handicapped and you would think that would be cause of rejoicing. The problem is that when we observe Porter with typical kids his age, his handicap is still very much apparent to us, even though he has made enormous progress. So for now, we’ve agreed to disagree about that one.

There was a story in the San Francisco Chronicle last weekend where the reporter basically blamed rich parents suing school districts as the problem with special needs kids and the overall cause of budget problem schools face today. The reporter came out and said that these rich parents were forcing school districts to spend more on their kids at the expense of the general population of school children. The only problem is that it was complete and utter rubbish, a one-sided screed that completely ignored many of the facts. For example, just last year a school district’s law firm in Fresno was sanctioned for using “‘misguided advocacy’ over four years of opposing services for a special-education student in the Bret Harte Union School District, southeast of Sacramento.” “Maureen Graves, the Orange County attorney who fought [this law firm] in court, estimated that the Bret Harte school district, east of Stockton, spent nearly $500,000 on a case that she once had been willing to settle for $8,000.” The ethical violations were so egregious that the judge “ordered every one of the firm’s 80 lawyers in seven cities to undergo six hours of ethics training and ordered [the lead attorney] to take 20 hours.”

So this is the sort of thing we’re potentially up against. We don’t like to think our own school district is this bad, but the reality is you never know. We know people have been forced to sue our county’s school districts over these very issues. We know that the County Controller, the third-highest elected official in the county, moved his family to Sacramento because the care for his autistic child was so bad. So these sort of facts do not exactly fill us with confidence.

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Porter’s New IEP

Categories: News, Porter, Autism — J @ 8:22 am

This morning there is another follow-up I.E.P. meeting at Porter’s school to formally discuss Porter’s switch to the new class he moved to a few weeks ago. We visited the class and gave the move our okay, but since he’s in a new class, the goals will have changed, as well, so a new IEP makes sense in that regard. Also, the last one was a bit contentious and we refused to sign the form, which I think made them nervous. Apparently, we were the first parents not to sign the form. I guess they’d gotten so good at bullying parents that we took them by surprise. Anyway, this morning’s meeting promises to be more of the same.

• • •

February 23, 2006

Love Day

Categories: News, Porter, Autism — J @ 1:02 pm

The heck with Valentine’s Day. Yesterday was my love day. Porter must have told me over a hundred times today that he loved me. And dozens of times he asked me for a hug, including one time he specifically asked for “ten hugs.” “I want ten hugs Daddy.” When you consider that for mother’s day last year, just nine months ago, Sarah’s biggest was wish was to hear Porter tell her that he loved her, it’s things like this that show how much progress he’s made. At that time I could just about get him to repeat the phrase after much prompting so I could make a little movie for her. But as to the concept of love, well that was a different matter. Did he understand it? It sure didn’t seem so. But over the last few months he’s used it with increasing confidence and seems to use it appropriately almost all the time. And I guess he has a healthy sense of himself because he often says to me. “I love you and me.

But what’s most important about yesterday’s torrent of “I love you’s” is that they seemed to be genuine expressions of emotion. They weren’t cold repetition but always were accompanied by other gestures of affection such as hugging, snuggling and even the occasional kiss. And while this isn’t new per se, the volume made me step back and reflect on how far he’s come in his ability to show his emotions and, even more importantly, recognize emotions in others. This is often one of the most problematic areas for the socialization of autistic people. Because they process information differently, they are often unable to read subtle visual language cues that the rest of us take for granted, such as body language, facial gestures and context. So they are generally perceived to take things literally and the reason for this is that they miss the other cues that shade conversation’s meaning.

If you’re interested in learning more about this, there’s a fascinating novel by Mark Haddon called “The Curious Incident of the Dog in the Night-Time” that’s a mystery novel about an autistic teenager who solves the mystery of who killed the neighbor’s dog. What makes it so interesting is the autistic character, Christopher, is so well drawn that he never comes off as a caricature and instead seems as real and you and me. But separating him from every other novel’s protagonist is the way his mind works. As the plots unfolds, so does the inner workings of the autistic mind in startling and unabashed detail. It’s one thing to read text and text about autism but this novel gives the effect of being able to crawl around inside his mind and be able to really understand how it works. And that’s a real achievement, in my view. Though widely reported to be autistic, the author is not, however. He did spend several years during his youth working and caring for autistic kids so that experience doubtless led to his understanding of Christopher’s character. He treats Christopher matter-of-factly and without too much sympathy, which I like, personally. I find that works better to get a truer picture of his condition rather than, say Dustin Hoffman’s Rain Man.

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