Friday, September 28, 2007

Tit for Tat

To continue on the Jenny McCarthy issue (scuse the title pun ;) ), she is hitting some pre-tty big venues on her self-described book tour: Oprah, 20/20, Larry King, Good Morning America, The View, People. It is somewhat heartening to have coworkers IM-ing me about Jenny stories; hearing about relatives calling/writing to parents of autistics saying "have you heard the 'latest' therapies that JENNY is using to help her kids?". Uhh, yea, we've been doing that for 2 years now, don't you remember me talking about that? No matter, it's good to see some of what we've been espousing getting some major media coverage.

I'd be happier than a pig in gluten/casein free schtoof, if it were not for the continued harping on the thimeresol issue. I saw it last night on Larry King; Jenny spouting about vaccines and causation and looking expectantly over at her DAN! doctor Jerry Kartzinel. Jerry looked quite uncomfortable; he knows full well that any misstatement will be dissected, analyzed and shouted down by those looking to discredit anyone who has an anti-vaccine bent. Even Larry King got in on it, asking the good doctor what we should do about vaccines if there indeed was an issue; Larry did not get a good response.

Despite their shortcomings on causations, I thought they have a good story to tell about autism. Our kids our precious; we should question medical wisdom that there is nothing that can be done for them; we should not give up on who they are and can become and that this can be accomplished both therapeutically AND biomedically. Sometimes I fear that my opinion is the minority in thinking that biomedical interventions are and should be distinct and separate from the thimeresol argument. I feel that much of the good biomed can do is swallowed up in the vaccine discussions.

Some are saying that the Jenny McCarthy publicity is actually hurting the autism population. That discussions about vaccines obfuscate the needs of the parents of autistics and more importantly autistic adults. That her 'don't give up' message is demonizing those who choose to not go down the biomed path. While I agree to a certain extent, I would also like to take those to task who are ardently anti-biomed or only pro mainstream approach:

  • Isn't it hurting those in the autistic community as well to deny the possible link of gastro-intestinal issues in some of the autistic population?

  • Doesn't it hurt some in the community to deny that Applied Behavioral Analysis IS a viable therapy?

  • Is it so far fetched that certain autistic children MAY have trouble properly processing heavy metals and/or other insults in the environment?

  • Wouldn't you agree that the mainstream medicine is frequently giving people on the spectrum substandard treatment and that; just like law enforcement, they may need to be 'trained' on how to deal with autistic patients and what may be common cocommitants?

I understand fully the need to rail against the one note sambas being played by likes of Safeminds and others locked into the 'hope' that it is all in the thimeresol. But in the pursuit of the truth, I feel we are throwing quite a few babies out with the bathwater. Quackery is pushing easy answers and simplistic, sometimes expensive therapies. I frequently disagree as to causations, but there are kernals of truth in what some are doing that are being whitewashed; things that could help many in the community.

Sunday, September 23, 2007


Everyone remembers the number who had heard the song, but the girl's name? Jenny, Jenny, who can I turn to? Tommy Tutone didn't have her in mind, but in my world I'm going to steal the song for my purposes and call her Jenny McCarthy. Jenny's our newest spokesmodel for the autism cause. I guess I have to fess up and say that I am a man and, as such, have a certain affection toward a woman who is both funny and sexy.

I did not see her appearance on Oprah, but it is very important, at least to me, to know about things that go out about autism in the media because this is often the only ideas that 'normal' folks get. We inside the autism community are locked in our own internal struggles, both at home and within the confines of the community itself, and we have little perception of what the real world thinks. Shows like Oprah shape opinion for millions. I grapple with the negativity that so many are against in the autism community. But there has to be a balance somewhere between the financial and emotional hardships that families face, without showcasing our children as out of control monsters.

In this case, from what I have read on the Oprah site and from second hand accounts, the appearance was a positive one for autistics, aside from the pro-biomed/anti-thimeresol message that so many find offensive. It has also been suggested that Jenny might be an opportunist just using her situation and celebrity to sell books, while I wouldn't doubt this is one of her top two reasons for touring at this point, I would think her situation is here to stay; and that while further books are sure to be on the way, Jenny is with the autism community to stay.

I wonder whether having a celebrity really gets the focus where it should be. It does allow people to see that it affects everyone and that the autistic child is still a 'normal' child, not a freak of nature. But with all the personal therapists, private schools and tutors nannies and the celebrities themselves taking a 6 month or 1 year hiatus to focus on their child, does the public get a reality-based view of educational, monetary and emotional turmoil faces by us ordinary parents and their ordinary children? Will these self absorbed stars even give a nod to these issues or will they continue on the existential view of causation, healing and reason for autistic existence.

In short, I applaud Jenny getting our number on the wall, I just hope we can open up more discussion topics like how it affects all of us and not just how it affects their careers...

Friday, September 21, 2007

We AIN'T Gonna Take it

I'd like to take a moment to try and help those less fortunate than us, to lend a helping hand to those struggling day after day to provide what is best for everyone. I came to the realization that these noble groups need a helping hand, a rallying point from which to gain momentum. I am, of course, speaking of those hapless fighters for the American way of life, the insurance companies.

I wanted to see if I could alleviate the pressure from my little end of the universe, the autism community. I came up with a slogan, an acronym to help them wade through the sea of bills being submitted by our community. Something that would stem the tide a bit to allow them breathing room. So, for their benefit, I bring you---A.I.N.'T....Autism Is Not Treatable.

This will assist them in stopping anyone with an autistic child's medical or therapeutic expense. Rather than having to say that Applied Behavioral Analysis is 'experimental' and might only help a small percentage of children, they can just say "This AIN'T covered". Instead of having to say that speech or occupational therapies show very slow progress in many autistic children and we can't cover any more than 10 visits, They can simply stamp "AIN'T Covered" on the bills. All those 'concomitant' conditions: seizures, gastro-intestinal problems, motor apraxia, sleeplessness; doctors everywhere are already attributing these things as 'symptoms' of autism, let's just eliminate the burden and stamp them "AIN'T Covered".

Yes, all these can be eliminated from the overwrought clerks and their overflowing inboxes. The country can be safe from these unnecessary intrusions and potential destroyers of the American insurance system. American's can be 'insured' of lower premiums; and all these issues can be taken care of in the place where they rightly belong: all administered by the local school boards in their local communities.

Now before you consider me heartless, think of all those poor unfortunates that are adversely impacted by these unnecessary intrusion on their way of life:
  • To the thousands upon thousands of stockholders, many of whom may be your parents and grandparents (some maybe even have autistic relatives) will be ensured a steady flow of much needed income to pour back into the economy
  • To the executives, who are pressured beyond measure to post those double digit profits EVERY quarter for Wall Street, lest they are put on the 'sell' list...
  • To the doctors, nurses and office administrators who continually have to submit and resubmit these bills
  • To the arbitrators and lawyers fighting hard to keep the system fair and equitable for all of America
  • But most of all, to all those hard working clerks, overburdened with the deluge of bills from the thousands of kids receiving all these experimental therapies, many of which take YEARS to show any kind of improvement. Rejecting, resubmitting, trying to stay within the confines of the rules and regulations put up ONLY to serve the greater good of society. Their's is truly a thankless job.

Yes, thank you to all you folks, I hope my proposal will make for a better world for you and yours. God Bless America!

Friday, September 14, 2007

Rotation Time

Ah Fall. I really feel sorry for all of y'all livin' way South of the Mason-Dixon line that don't experience it. You know who you are. You have that pair of green and red shorts just in case it's a 'little warm' at Christmas! I commented to someone the other day that it FEELS like school. Meaning it was just cold enough that you could just barely feel it, the sky get that deeper shade of blue, the bees start acting crazy. It's not really Fall that I love, it's this time and just when it starts, about a week before 'near peak' on the tree colors in Northwest NJ. Then November and on, it's just pre-winter.

Anyway, it's that time again for those of us with this sick money saving idea and multi-child households to start packing and unpacking again. We see if we guessed right on the clearance purchases from January of last year. If we guessed right on what things could be passed to the next kid. Did Yu-gi-Oh maintain his popularity?

If I had room and time, we'd have this process down to a science. Alas though, there is no magical corner of the attic with named shelve for each kid and season/year useful. There is no time to sort out the summer stuff, while at the same time, scramble for those long sleeve shirt and that jacket we got on clearance for Jason for 7.99.

Two very frustrating things in this process. One is having all the summer stuff packed and lugged into the attic, then finding the odd swimming suit or shorts. The other is finding the season's clothing AFTER the season has passed. This will be inevitable as I dig through the dozens of bags I'll pile through, only after finding every screw sticking out of the attic floor with my KNEES! "Aw man! Here's all those new short sets for the girls that we bought last fall."

Mercifully, we have some ready-made transition children: 10 hand down to 8 by; 5 hand down to 3 girls. This years clothes become next year's basics for the younger. In theory anyway. The boys are becoming two completely different builds: the older, shorter and skinnier, the younger taller and wider. So forget the interseasonal exchange for them. I can't even figure out how to sort their laundry anymore. Pretty much exact same sizes, pretty much no chance for me to get it into the right drawer unless it's one of their favorites or the Zen master of Clothing identification can point it to the right pile. Confucious (Linda) say: "Stripes of white and Spongebob will pass to Dillan solids of Pokeman are destined for Jason's drawer"

Men kinda get a bad rap in the clothing department. Identifying who gets what clothing is a branch of science like zoology. But mothers think it should be some kind of instinctive knowledge. I'll hold something up and say "Grace or Liv?" I'll get the rolling eyes.
"Is that a onsie" (Phyllum)
"What SIZE is it?" (Class)
"Does it have one of those extenders?" (Order)
"Any stains?" (Family)
"Not Really"
"Is Livie's name on the tag?" (Genus)
That's Gracie's (Species)

See men are used to absolutes, this is an evolutionary science. Kinda like studying those fast-mating fruit fly genetics. I never liked Biology (yea, smarta$$, then why do I have five kids, very funny). So textile biological evolution is not for me...

I still love fall, but I can't wait to get through this sorting ends...probably about two weeks before the spring rotation...

Thursday, September 06, 2007

In Biomed Parents' Defense

Bad combo, first week of getting 5 off to school and trying to write on this subject. I tried anyway, despite lack of time/energy; hope passion was enough:

I'd like to try and give another side to a couple of discussions surrounding the rationalizations of parents who choose biomedical interventions. The neurodiverse seem to have an interest in the inner workings of the biomed mind: Kev's account of lamentations of a biomed board and their loss of faith; Mike Stanton's summary of biomed and its motivations

The zeal at which many on the neurodiverse will go at purveyors of biomedical treatments for autism is truly a wonder. It is relentless, impassioned, sometimes merciless and dirty. But, after all, it's for the kids. Protecting the kids is the banner that they can rightfully fly. Most of venom is injected at the doctors and theorists of unproven therapies and causes. But the fervor doesn't end with the doctors of these various practices, they continue on to those parents.

Most of the time, the attacks on biomed parents are focused on those parroting the causation and 'curation', but in my opinion, it frequently paints a large brushstroke across almost anything not recommended by the AMA, FDA, CDC, JAMA, and any other acronym. Frequently, the fact that someone somewhere touted a therapy, vitamin or diet as a 'cure' for autism; the therapy, vitamin or diet is blasted as quackery, glossing over the potential for some of these things to help medical conditions. When pressed, of course, neurodiverse will relent and say that solving autistic children's medical conditions are a necessity and that there may be value to some kids and conditions.

But with communication being an issue, it is often extremely difficult to tell when a child is suffering an ailment vs when it is part of normal issues when dealing with the child's frustrations, sensory overload and the like. What's frustrating for the parent is that mainstream medicine will often look the other way, hiding behind the cloak of 'it's part of the disorder'. That's one unfortunate reality that drives autistic parents away from the mainstream and into the waiting arms of those from every end of the alternative spectrum. A parent with a screaming autistic child, just like those who have screaming neurotypical children, are looking for a reason for their child's behavior. It does not have to be 'part of the autism' necessarily. If mainstream would stop looking the other way when dealing with autistic's issues (maybe have specialists in the field?), then you would find many parents like ourselves moving away from alternative arena.

I wholeheartedly agree that we need to expose those touting a cure or radical recovery, but that does not mean that the observations of improvements by those practicing biomed should be thrown out. Just because those doctors practicing biomed reach the wrong conclusions doesn't mean the premise is wrong. I've read of countless parents who have seen drastic improvements putting their child on a GF/CF diet. The wild notion that 'opiates' are generating autistic symptoms doesn't negate that fact.

I hear frequent accostings on parents saying that they are just looking for the 'normal' child trapped inside their autistic child (Stepford children was the term most recently used). Maybe it's me and my situation of having two children on, shall we say, 'different' ends of the spectrum. One is verbal and some minor issues with communication and interactions; one non verbal with many issues with expressing herself and interactions. It gives me a unique mindset about where kids are on spectrum and what their goals can be, that they can and should have different goals, objectives, and therapies.

I just feel that parents need to get through the grieving process, one of them being denial. But beyond that there is both an acceptance AND yet a desire to improve their issues. Hand flapping is not only a 'symptom' of autism, it is also potentially a distraction; a way to get focused and a way to stay out of focus. It's not about the embarrassment of the child flapping in the supermarket, it's about helping that child to focus that drives a parent to look for ways to minimize the stim. It's be about improving concentration, sometimes even preventing injury. A parent should not necessarily second guessed as t their motives of minimizing 'autistic symptoms'

I also feel that many parents are put into this 'keeping up with the Jones' kids' bucket when they do not deserve to be. I have evolved in my realizations enough to know that the neurodiverse are not about keeping autistics the way they are, but enhancing and celebrating WHO they are, regardless of successes or failures. I think it's time to recognize that biomed parents are not the idiotic, status seeking, monsters that they are often painted as in the ND 'media'.

Monday, September 03, 2007

The Eugenics Question

I recently commented on Autism Web using a link to an old eugenics display from the 20's and comparing it to the current Autism Clock. Since we are isloated for the 'normal' population, I often forget the prevailing attitudes of those not affected by children on the autistic spectrum or children with special needs for that matter.

I had never given the fact that our society screens for genetic 'defects' like Down Syndrome much contemplation in the old days. On some level, I have no problem with giving the choice of whether you are up to the challenge of raising a child, and raising a special needs child is just that much more difficult. But, isn't society giving a prejudgment of what is a worthy life vs what isn't? If we come up with a way to screen for autism, will the same selective process occur?

It's scary to think of the 'old me' coming to a decision on whether Liv was worthy to exist. Hindsight 20/20 of course, never...but FORSIGHT? I have no way of seeing what SHE will become, how could I decide or realize the strength in me to see what I would become? I had no idea that I could handle this life before it happenned.

Then there's Grace to consider. It's one thing to think of Liv, profoundly affected, non verbal, struggling to acheive an independent life. It's quite another to see Grace, autism spectrum, yes, but more than likely, she will lead an independent life...maybe even a 'normal' life, whatever that is. What would these screenings show of her future? There are severities of Down's that are as close to 'normal' as maybe 20-40% of the population (source: fantasy information network, just a guess). Why would we arbitrarily put a stigma on a group of children even more likely to be intelligent and not in need of anything more than an alternative form of learning? Get in line, those 'useless' artist talents, creative writing skills, musical aptitudes, acting and all those other things that, more than likely, will produce less than fiscally productive members of society could be next.

I ruminate over the 'fact' that we, as a family unit, are a drain to the resources of 'normal' society. But why is donning a helmet and travelling by bus to attack others with helmets for possession of a ball on a 120 yard field in an organized fashion considered normal? Why should I feel bad that my child's disability may force dozens of families in my community to pay for this activity? Or that a half dozen or a dozen kids may not reach their full potential in order that my children can reach theirs.

I guess my as yet unproven answer to that is that the cost of those 6 kids is nothing compared to the 60 people who would not have government services because my children would need lifelong services had they not had these early therapies. I say unproven because we do not know if therapies are really needed, since this early diagnosis of autism is a new phenomenon. We also don't know if they will really work long term and we don't know what therapies are most cost effective. So, I fear from society's point of view, someone's going to stand up and say "why are you wasting all our money on a theory?" or, worse yet "why are you wasting our money on something that did not work?"

I guess the most fearful of the questions society could ask is "why are we allowing these people to exist in the first place?". I won't get all sappy and cutsy on you; if society needs reminding of their duty to all of its members, then you can find me and mine in a cave somewhere...

Sunday, September 02, 2007

Time Travel Needed...

School starts this week for the 5, and we're in the market for one of Hermoine Grainger's Time Turners or maybe something from HG Wells or something, because all five are in different schools with different start and end times. Add in therapies after school possibly for two and I think Linda will qualify for a job at my company as a logistic manager. Buses arriving at our house at the same time kids are due at school; kids coming home before during and after others needing to be picked up. I kinda liked the old days when kids could walk home; nowadays, younger kids will not be released without a parent present.

We purposefully plopped ourselves within 1/2 mile of most all schools in the town, but we STILL have to pick some up. I guess it could have been worse; we do have two bussed to and from our door and one is bussed to the farthest school. Still, we're both going to probably have to be two places at once on back to school night.

Anyway, Linda's already figuring out what she's going to do with all the free time she's going to have during the week (all of 90 minutes worth per day). Despite being able to do more with that 90 minutes than Martha Stewart on amphetamines, I'm sure I will hear that it's not enough...