Monday, May 21, 2007


A little birdie told me my family's looking at my blog (actually I'm the little birdie that told them). I guess I have to watch my language. Not that they're this puritanical bunch, my brothers and sisters sometimes curse like sailors now. It's just that, when we were children, our household never tolerated any form of bad language in the house. No forms of sexual talk either, except maybe what type of stork brought the babies to the house.

To illustrate, one time we were driving in the country when we were kids and we saw a bull mount a cow. Now my mother in law, a nurse, would have showed her kids "Look, their mating!", stopped the car, and taken pictures. My mother, on the other hand, mumbled "Oh Dear' and looked the other way. So cursing and sex were learned where they ought to be learned...on the street.

Now in proper context, one day, when I was in my late teens (well back in the 20TH Century) we asked my mother what we are having for supper. Completely straight-faced and dead pan she said "Shit on a shingle." We were floored, dumbstruck. I had NEVER heard either of my parents EVER curse. "Mom, WHAT did you SAY?" we stammered. Her explaination was "Well, that's what they called it in the Army!" My virgin teenage fucking ears! They had never cursed in front of me, and our reaction ensured that she never did again.

So, of course as adults, we were as loose with our tongues as a rapper on a rant. But alas, parenting changes your tune. Linda and I were kind of gutter mouth-ed through the birth of our first child, Aly. We remained that way until around two, until one day, I was putting together a piece of furniture and hurt my hand and said "Shit!". Of course, you guessed Aly kept repeating "Shit, shit,shit-shitshit". Our potty mouthed days were over after enduring the scowls of or day care provider. Today. we're not QUITE as stringent as my parents household was (thanks to my mother in law's clinical ideas of explaining sex... and her forgetfullness sometimes with four letter words in front of the kids!) , but we're sure that any language learned will originate from the street, we'll take care to get into the definitions. Maybe we'll save the questions so they can ask Grandma!

Now, we're much much more stringent with our vocalities, and our kids have a virginal perspective of language where words like stupid, idiot, shut up, hate, dumb, be quiet and retard are just as bad as the other 7 you cannot say on TV (gawsh, even THAT phrase is meaningless now with HBO!). The 'street' is catching up with our two oldest however, and we THINK they now know most of the real bad words. Although I'm not askin' which ones they know!

Anyway, I went back and cleaned up my old posts...we'll have to have an air of civility around my family...unless you have a good 'clean' dirty joke... my dad loves those!

Sunday, May 20, 2007

Is the Internet Creating a New Form of Research Science?

I'm not ashamed to admit that I am impatient with the progress of research science, especially as it pertains to autism. Ever since I was drafted into this autism advocate army in 2004, and because of the way my daughter regressed into autism, I have thought there was something more to this disorder than just a natural genetic switch that got turned on at 16 months. This resulted in us making, at first, a near frenetic search for a cure. Today it has become a more measured and calculated trial of various biomedical therapies. In either case, our cohort, our confidant, our conscience and our co-conspirator has been the internet.

The instant sharing of information from the far corners of the world, a concept and only a promise less than 10 years ago, is now so commonplace it is taken for granted. Even language barriers are slowly being broken down with translation software. Before 2004 (BA...Before Autism), I was enamoured with the internet's potential; but I never would have thought about it in terms of tracking medical conditions or disorders. So now we can have so many eyes looking at so much medical data and information, it would seem to me the scientific equivalent of the NASDAQ of research potential. But, to me, we are only scratching the surface potential of the internet's use in research science.

Never has there been such an instantaneous sharing of information so close to the test subjects themselves. Before, the ability to research; the availability of information; and the sharing of information was the almost exclusive domain of scientists and researchers. The explosion of users and speed of the internet and the availability of information has transmuted this inequity over to the people most affected and highly motivated to find out about the disorder or disease that affects their lives. There are probably other disorders, but I feel that autism is at the knife's edge of this change, the reasons are clear in my mind. First, a near 100 fold increase of those classified on the spectrum in the last generation. Next, a near criminal lack of knowledge of most medical professionals to many aspects of the disorder. Lastly the recent ability to diagnose at a very early age; putting the onus on a highly motivated and highly internet savvy group---parents of young children.

Like it or not, there are literally dozens of boards now supporting all types of autism biomedical therapies. Parents, like my former self, flock to these sites soon after their diagnosis, largely because there is very little support coming from the 'traditional' medical community; you are basically given a pamphlet and a prayer from your doctor after diagnosis. Parents then jump on the internet and given false hopes of quick universal causes and cures; both expensive and unproven. But these boards are the layman's version of a research project. I would think that if a board is either not getting the point across or just flat out not working, the 'research project' would die. It does leave wide open the potential for those who have good PR but bad premises to push through an idea that has no real merit; a placebo-induced psychosis where anything would work. There are still many problems with misinformation; still too much scuttlebutt, opinion, out and out lies. Money is going to be made off of this disorder, much of it based on incomplete, inaccurate or unsubstantiated information. But at the core of these boards are people all in the same situation; looking for information, testing results, sharing information and motivated more than ANY research scientist ever would be.

But I think some underestimate the power and the depth of this new movement toward putting the responsibility of research on the people. They see it as an invasion of the rabble of ignorant people into the domain of statisticians, scientists and researchers. While they do have a very valid argument from a medical standpoint, there is also the counterargument that the realm of behavioral research has always had the distinct disadvantage of being unnatural from the word go. Putting a child in a strange situation, with standardized questions and stagnant expected responses cannot be completely reliable either. Still, many argue the need for statistical backing of causation and results on a disorder that has a notoriously subjective view of results and a wildly varying disorder base in the past 20 years. How can causation and results be defined if the disorder ITSELF is still being defined? But I digress. Parents can provide the missing link in these researchers' puzzle and allow them to get into a world they cannot create in a lab or office.

I think that researchers can and will tap into this resource of willing and able subjects to transform the gathering of data and use of it to previously unheard of levels. Sites like the IAN Network , are trying to do just this and may be at the forefront of this potential revolution. It's only going to be a minor stretch for both the researchers to relax their need for control a little, and a stretch for the parents to be more vigilant in their documentation and process, and we will have a potentially mind boggling new way of tracking disorders and trying out various therapies.

In the end, you really don’t have research science going on more than you have the near perfect availability of anecdotal information. Fodder for the research scientist to chew on and figure out what to look at next. Despite the placebo factors; the mass hypnosis potentials; the money to be made; and the virtual indistiguishablity of fact vs opinion; the internet has the potential to transform research science into a truly global entity from both a geographic and participatory perspective. Let's hope, for my daughters' sakes, that it will move as fast as I think it will...

Friday, May 11, 2007


On May 5th of last year my mother died. She left her legacy though: 7 kids and lots and lots of grandkids. One of my frequent questions to her when I was an adult was "How did you do it?". We've never gotten a straight answer from neither her nor dad, but I think I'm now learning why. Having 5 myself, including two on the autistic spectrum, my wife and I have learned that it ain't easy.

My mom was a whip. She could rattle off names, dates, to do's, whens, whys, whos and hows. The house I grew up in never seemed to be lacking, even if you had to be quick to get whatever was around to get! 18 hands could pick through a package of Oreos in a nanosecond! Laundry was always done (except, where did she hide the dirty stuff, I have a laundry room FULL of dirty clothes!). While my house was never the Brady Bunch, I felt we ran a not to distant second. But mom was always the hub; keeping the place running with the efficiency of well run small business. My dad just made the money and stayed out of the way of the dynamo!

We lost my mom to senile dementia after many years of a slow downhill march. I always will hate the fact that she had lost that ability to keep it all together in her head over all those years, only to have that talent and everything else that was precious to her slowly get picked away by this degenerative disease. She probably felt the same way about her mother, who lost HER faculties in much the same way as my mother. Genetics ties each to the next generation; I am convinced that genetics for autism and Alzheimer's will be found to be similar, or at least both will be found to have similar susceptibilities.

Anyway, I meant this post for my wife. While I'm not quite the laissez faire-type person my dad was when it comes to the day to day affairs of the house (thanks, woman's lib!), I still am marvelled by the similar fervor at which the house hums along. It's amazing what my wife Linda gets into a day. While I go through my paces at work, she gets 4 kids off to school, has 3 different home therapists to contend with; 3 different outside therapy locations. She has her own therapies she does with the girls; biomedical research; supplement 'mixings'; those 'little' incidentals like homework and meals (the girls are on a GF/CF diet as well). We share the duties of laundry and dishes; diapers and bedtimes. By the time I get home after being away for twelve-odd hours, the average response is "I'm whipped!". But still there are bills to pay; backpacks to pack; things to research; paperwork for schools, state, doctors. I'm usually in bed a half to an hour before her.

It's so absolutely impossible to get personal in this type of pressure cooker environment. We barely get those 5 minute conversations that last 3 hours in about what we need to talk about; there is almost no 'us' time. It's no wonder there is an 80% divorce rate among parents of autistics. Most couples don't get the 5 years of childless getting to know you; then wind up with an autistic child and no real 'communication base' to work from. Thank God we have a strong foundation!

I do indeed see now what my mother went through and what my wife is going through. And why, when we are asked in our old age, "how we did it", we will just smile (grimace), shake our heads and say "I don't know". I honestly don't know how we do it, and I certainly don't know how she does it.

Anyway, I have a card already, babe. But I wanted you to know that I marvel at all you do for all these kids (kids include me sometimes!). There is no one I'd rather be with, nor could possibly go through this with other than you, Lin. You're the best thing to happen to me, them, and all of us. Nobody does it half as good as you, baby your the best! Happy Mother's Day, Bill

Wednesday, May 09, 2007

The Perfect Storm

If you have ever dealt with a stomach virus whipping through a household, you'll know what we've been through. I'll try not to get too graphic, but as Daffy Duck once said "I have to athk thothe in the audiethe with weak conthitutions to leave the theatre for this prethentation"...

It tharted (thorry, out of Daffy mode) It started around 11:30 PM on Saturday night. I, being the early bird, went to bed around then. I began to drift and just as I was hitting that 'dreamy ' state, I hear ( in that crisis tone of voice that sends me up like a shot) "BILL, Liv threw up!" I'll not get into any details about what the bed looked like, but if it was a car, the insurance company would have declared it 'totalled'! I remember carrying her into the living room while Linda assessed the alternative sleeping arrangements. No chance of getting her back in that bed tonight, better off in our bed. Big Mistake...HUGE, as Julia Roberts said in Pretty Woman! That kid was springing leaks all night long, it was every 20 minutes that we had a new 'plumbing problem' to overcome.

Night passed, the morning birds just began greeting the dawn, FINALLY she settled down. We got about an hour of uninterrupted sleep. I heard Grace around 6:30-7 and said to myself, let her hang out in her room for a half hour, I'm beat. WAIT! she's in the SAME room as all that...that...that, I shot out of bed and thankfully got to her before she began exploring the room, and discovering things only meant to be found by microbiologists!

OK, that was bad, but trust me, we've been through far worse incidents. The Pea Soup incident of 2002; the emergency room incidents of 1997 and 2005; this was nothing new, EXCEPT that Liv was acting relatively normally all day Sunday. Sunday night though, there she goes again; not nearly as bad as the night before, but still enough that she had to be evacuated. Monday morning, same thing, acting fine. We had ourselves a minor medical least for a couple of hours!

Nothing can prepare you for a true tragedy, but this is as close as you'll ever get without anything really bad happening. I guess it's kinda like having to evacuate your house because of some deadly gas, only to have it be a false alarm. Anyway, I get a call at work that the mystery is solved; Dillan came home from school and had thrown up. OK, two kids down, we can handle this in our sleep (we often had in the past and in that exact condition). 30 minutes later, I get a call that Jason's down too. OK, bad...but not epic.

I get home and it's somewhat chaotic, not MUCH worse than the 'normal' nightly mayhem; with the possible exception of the two bodies in the family room with stainless steel pots next to them! Linda is trying unsuccessfully to feed Grace...and she receives 'the wave'. In an instant, I am alone attempting to fight this tide. I know I am succumbing to the tide as well, but I am a better swimmer ( I am proud to say that I was the ONLY person in this household to 'hold it down' throughout this ordeal to use a euphemism). I got the girls in nighties and got them off to bed and collapsed onto the couch. It starts to get fuzzy at that point, the sounds of people succumbing to the 'tide' were becoming intertwined. I finally heard the distinct sound of my youngest 'drowning', ran into the room and found her bed to be awash. I picked out the dry articles and scooped up the rest for the wash.

It was time for an EMM...and Emergency Management Meeting. We were in crisis mode, Linda dragged herself out of bed and we took stock of our assets: One miniature futon Dora bed for Grace to sleep on in the living room: 7 dry towels to cover the bed (BRRRAP) 6 dry towels; 3 blankets; one hand towel and one sweatshirt. OK, I had the couch and coverage of Grace in the futon, Linda was not going to be much help, she was gone, only good for consultancy. Aly had been swept up about 1/2 hour later, completing the consensus of the ENTIRE household being under siege. Dillan had collapsed in his upper bunk; Jason chose the couch next to me. We hunkered down for the night.

Grace was not going through this quietly. Every 20 minutes there was a new 'wave', which appeared to be the consensus in the house (we called the CDC, which uses our family as a sort of leading economic indicator for minor diseases and passed the info along ;) ). I got to hear that robin greeting the sunrise again. It was like looking at the scarred landscape of a tornado tract (I'm sorry to those who actually have lived through tornadoes, as I said, close but not near REAL tragedy). Pots that needed emptying, another destroyed bed for Liv; a destroyed futon for Grace. Thankfully, the bedding on the older three were spared.

The night before, we had called my mother in law, who was scheduled to arrive early in the AM so that we could go to Grace's IEP meeting. We had told her in mock fear "Stay AWAY, STAY Away!". Now we were calling her saying, in real fear "please come, PLEASE COME!" The Red Cross came through, bringing supplies and a willingness to cover whilst we tried to recover. We made sure with our last ounces of energy, that there were no more absolutely horrendous things to be cleaned; all offending laundry was at least in the wash.

We made it through the rest of the day; Linda down completely, me making a mock effort at helping. She stayed the night and must have been our good luck charm, we got through the night all in our own beds and none having foreign substances by morning. I was not awakened by the robin this morning. I made it past sunrise until I heard the thing men dread hearing, both sick or healthy: the sound of the garbage truck making it's way to my block at 6:30AM! I had 3 minutes to gather the recycles from the backyard to the street. With collections only once a month, you DON'T miss this pickup!

Anyway, it's a different world today; kids are eating and relatively healthy. Linda's still somewhat down but moving quicker by the hour. Just as I'm completing this...after 2 days of being dry, Liv decided it was time to give one last (hopefully) reminder. Out came the carpet cleaner. Once again, back to stuff that we can handle; pass Liv off to Linda and get to work!

This blog entry sponsored by Bissel Little Green, the best little carpet cleaner in the business, and by Lysol, our family 'dip', also by Huggies in the economy size!

Tuesday, May 01, 2007

Drafted or Volunteered

I must admit, I have never been much of a humanitarian. People with disabilities were never far from just a mild curiosity of a combination of pity and a little bit of awe. Awe in that, despite the challenges they face, they manage to get along just fine without me. I never expected that I would have my perceptions and my life turned completely around in a matter of two years.

Since my indoctrination of the world of autism, I had and still today do not consider the probability that my autistic children, my NT children and my wife and I will be met with some kind of discrimination. Aside from the obvious discrimination regarding education and the disinformation about the disorder in the medical community, I can honestly say that I have encountered little more that a somewhat piteous inquiring glance at myself and Liv in shopping areas that I might have given just a few short years ago.

I am not prepared for the day when my children might be denied extra educational concessions, whether Liv will be judged by her lack of linguistic skills and have her intellect overlooked or belittled. I am not prepared for anything but compassion from her schoolmates and her teachers. I am not prepared for the probability that Grace might be prejudged as a problem child and not a child with a challenge to overcome. I'm an idealist at heart and I can't prepare for things that I would now consider unfathomable. Someone or something is bound to burst my bubble though.

I expect that the next 10 years will be momentous for the autistic movement. We will have the DSM IV generation come of age, invade the school system, and despite my blogs somewhat to the contrary, will strain educational resources perhaps to the limit. But the strain will be more a shift of resources from that of maintaining existence of what was probably considered an unable individual, to that of an individual who is able to contribute to society. How far that goes is anybody's guess. Will we be able to have autistics achieve more than they have in the past because of better educational strategies, or will autistics be forever branded as anti-social outcasts that will not be able to achieve as much because of society's impressions? I guess that last sentence sums up my hopes and fears for my children.

To all of those fighting the disabilism fight, I have become a draftee. I hope that I can help in any way I can...