Friday, October 31, 2008

Our 15 Minutes



Have you heard of us yet? We're all over the media? We make appearances, we're going to be recorded for radio, we're just plain county-wide!
OK, we're about as famous as the kid who lost his shorts during gym class, but we HAVE made some minor ripples in our Monmouth County pond. We had an issue with the girl's school, where rumor was the town that owns school building was going to kick us out and make way for a preschool classroom or two (we have 9 classrooms in the building). Well, someone alerted the media the day of the town board of ed meeting and here I am picking up Liv for a therapy session. I get suckered into a News 12 interview and I get my 10 seconds on the evening news; no news organization can resist an 'autism getting the shaft' story. Besides, they got the cutest shots of Livie in the car with her Koosh Ball!

Me and Lin say our piece at the board of ed meeting, a terrifying 30 seconds apiece talking in front of the SUPREME EDUCATORS OF OUR LAND...or at least 10 people seated behind cafeteria tables dressed up like conference tables; turns out they are just trying to appease an audit request and they are just trying to get a 'written' contract from the autistic school district. No immediate foul play for seen, but the future may be ominous...bah, who cares, the girls will graduate out of that school before then!

The REAL 13:50 of fame came on Tuesday. Several months ago, we got a call from a stranger, saying she was from the Holmdel School system. They were holding an autism awareness night in their town and someone at our school dropped Linda's name as 'THE' mom with the knowledge, the scoop, the low down, the goods on all things autism. What they didn't realize that what she DIDN'T have was nerve: she is terrified of pubic speaking! She listened to the message; re-listened; called me; had ME listen to the message, ruminated that she could not POSSIBLY get in front of an audience.

"I could be humiliated in front on THOUSANDS!"
"But, honey, the auditorium only seats 500."
"YEA, but what if it's FILLED??"
"Oh, comeON, the auditorium won't even be half filled"
"But, but that's more than 200 PEOPLE!"
"Don't worry, it won't be that bad", I said

Me being the shy, introvert with the dry and the desert delivery (YEA right, maybe if the desert's in VEGAS!), just blurted out:
"Hey, I'll go on stage with you, you'll be fine!"

That bolstered her into calling back and agreeing to the presentation. We would be one of about 6 different presenters and they wanted us to talk for about 15 minutes. Linda thought that 15 minutes was nothing, we could easily fill up 15 minutes of time with what she had bulleted out. I made the mistake of reminding her that, in speaking terms, I found that 15 minutes could be a very long time. I had the corporate mentality of having sharp-eyed VP's picking apart your data and asking pointed questions. In either event, I made her more nervous. I was now going from 'we're going to speak' to 'YOU are going to speak and I'll just sit back and add little comments'. I'm good at BS'n, but she's the real brains here with advocacy and therapies etc, so now, I'M getting a little nervous.

The passing weeks were spent writing a 30 second biography for the pamphlet; an outline of what we were going to be talking about; and finally a detailed bullet of ideas of talking points from early intervention to therapy to advocacy. All the while the unveiled threat that "Bill, you know, I'm going to just stand up there and NOT SAY A WORD. You are doing ALL the talking!" Even through all this, I could tell she was into it; if for nothing else than to make sure we did not make idiots of ourselves.

Well the Tuesday finally arrived, and Linda was unusually calm, but the weather was momentous. Rain in the morning and spots of SNOW (We DO NOT get snow normally in NJ in October) in the afternoon. "I'm sorry, but we're SNOWED in, Mrs Holmdel educator" was Linda's dream that day that didn't even come close to coming true. We talked about what we had written down on the sheets, but all the while the 'I'm not going to talk' theme continued.

Turnout was a little light, due to the weather; there was only 75-100 people in the room. We were 4th on the agenda, after a doctor and a few therapists. All had polished Powerpoint presentations and I feel we are doomed since we are 'winging it' with no graphics. But as the presentations wore on, I sensed they were losing the audience. We get announced and I begin my spiel. There's only one microphone and I crack a couple of jokes on how Linda's happier that way since she won't be forced to talk unless she actually steals the mic from me.

I start into our family and our history on how we started with the autism community. And all of a sudden, the mic's being ripped from my hand and Linda goes on a tear with the subject. I have to wrench the microphone back out of her hand to complete my thoughts and guide us to the next subject. Several minutes later, I falter for a second and WHAM, she's back to talking, now with a confidence and candor I knew I was going to get out of her. We passed the mic back and forth for I don't know how long, at LEAST 15 minutes in my mind, and the whole forum wound up running a little late, so It might have been 20 minutes. We finish and get rousing applause.

Afterwards, during question and answer, people are bringing up points we made that I barely remember saying, it was truly a blur. We were told that we picked up the tenor of the forum, people were indeed getting a little bored with the technical jargon and needed a boast of real life.

Best of all, we are welcome the next time they have a conference and even better best, Linda is willing able and actually EXCITED about the prospect. I'm glad I insisted and I think she is to.

And finally, our little Gracie was picked in the school to say the Pledge of Allegiance for a radio show they are doing about the school. I don't know all the details yet, I just know that we have the makings of yet ANOTHER star in the family; at least we're not getting famous for losing our shorts!

Friday, October 24, 2008

Don't Cure Autism Now

It seems as if Frank Klein's essay "Don't Cure Autism Now" is missing from many links because of an issue with the home personal page that most set their links to. If Frank or anyone else has objections to me posting it here, please let me know, otherwise, here it is in it's entirety, I think:

"Cure Autism Now." "Defeat Autism Now." Those groups, and their
significant following of parents of autistic kids, are no friends of mine. They might assume that everyone shares their idea that autism is a horrible thing, and that it is obvious to all that autism must be eliminated. They would be wrong if they thought that. Like many fellow autistics, I do not see autism as a horrible thing. That is, though, not to say that I have nothing in common with the cure-autism crowd. Like them, I would like to see the suffering that can accompany autism to cease. I would like for all of the communication difficulties, the lack of self-care skills, the inability to live independently to cease to exist. That agenda is in common with that of the aforementioned groups. So why do I see them as the enemy?

Well, the answer is not hard to see. It's right there in the names of their groups, if you look. If they truly accepted us, as individuals that are equally valid, they would not be trying to cure us, or to defeat us. Intentional or not, that is how I interpret their efforts, and I am not alone in that line of thought. Being autistic is intrinsic; it is a part of who someone is, and it could not be removed (even if a cure existed)without irreparably damaging the person that once was. To cure me is to destroy me, and to replace me with someone else... someone more normal, someone that the more narrow-minded subset of the normal people can better tolerate.To cure autism is to eradicate people like me from the planet... to completely eliminate my kind. I see that as genocide. I do not see eliminating my kind as the "final solution" to the problems that can come along with autism.

The talk of autism as if it were a disease is in itself problematic; diseases are bad, after all, and as long as it is seen as such, the need for a cure will always be on people's minds. If "blackness" (as in being of the black, or negroid, race) was seen as a disease, there may be talk of a cure for that as well. People could point to the fact that black people, by and large, are less prosperous, less educated, and lead less pleasant lives than "normal" people (which refers to whatever group is large enough to declare their ways as being the correct ones). The same things could be said about autistics suffering because of who they are could be said about people that suffer as a result of their race. Of course, the difficulties faced by severely autistic individuals are far more severe than any problems based on race, but the point is that these difficulties, not autism itself, should be seen as "the enemy."

Think of the furor (or should I say f├╝hrer) that would exist if there was an effort to "Defeat Blackness Now!" Even if it were motivated by a humanitarian desire to end the negative aspects of being black, do you think that the black people would support that agenda? Of course not; they'd be up in arms, and rightly so. The folly in eradicating an entire group of people to eliminate the suffering that some of them endure (and the burden they impose on the majority group, which would rather not deal with them)is obvious using this example. I argue that it is no different with autistics.

Many normal people fail to delineate between the things that are at the core of autism and the things that are associated with autism, but are not in itself autism. The line is obvious to most autistics to whom I have spoken; really, it is obvious if you want to see it. The most unpleasant traits seen in autistics are generally not the core autistic symptoms themselves.


These associated symptoms will be present in some autistics, but not all of them, and are not a factor in diagnosis. Some of these things are mental retardation, severe sensory issues, gastrointestinal symptoms,
over excitability, self-destructive behavior, et cetera. Some people see these things, see the suffering they cause for both the autistic and his caregiver(s), and conclude that the autism is a bad thing.

It is true that these bad things are a part of the broader autistic syndrome, but they are not core features of autism itself. It is these things that I would like to see the curative efforts be mobilized against. Not all autistics have any one of these problems; rather than try to eradicate autistics from the planet, why not eradicate the bad things about it? That makes the most sense to me. Blacks have a higher incidence of several diseases, the most famous being sickle-cell anemia. Rather than wipe out the whole race to end the suffering from such things, wouldn't it be better to try to fix the specific problems instead?

The problem is that many normal people cannot see past their own desire for conformity and their pack mentality to see that autistics, weird as we may seem to them, are an equally valid kind of person as they are, and not in need of a cure, or of fixing. They see the bad things about autism, see the suffering they cause, and make no distinction between that and the "weirdness" autism causes. They make no distinction between the things that cause disability, and the things that cause difference. It's all problematic for them; it all needs to be cured. That is short-sighted,and ultimately would prove destructive for the entire species, normal or otherwise. It is not hard to see that many of the great thinkers in society have had enough autistic symptoms to seriously consider whether autism is linked to genius (I have made the case previously, in my article entitled Autism, Genius, and Greatness). The link between "eccentricity" and genius is well-established; this eccentricity," as it stands, happens to look a lot like what we now call Asperger's Syndrome (AS). A disproportionate number of the great thinkers, scientists, inventors, and innovators in history had enough autistic symptoms, as documented in the historical record, to assert that they probably were on the spectrum. As it turns out, many of the traits of AS just happen to be the things that are needed by society's innovators and thinkers. Curing autism would make people like them more normal, but is that really what we want to do? To make a genius normal is to take away his gift; to take away the gift that geniuses give to society.

While the literature comments that about 80% of autistics are low-functioning (mentally retarded), that really is not true. It has been estimated that there are about four people with AS for every autistic proper. It is no longer much of a question as to whether autism is related to AS; it is now well-accepted that they are on a spectrum, and are indeed the same condition in varying degrees of expression. It has also been observed that people with AS are generally above average, often well above average, in intelligence. As such, autism is not a condition that usually causes retardation; as few as 16% of people on the spectrum are retarded. The 80% that is the AS group has a disproportionately large number of people with genius-level IQs. Since AS and autism are the same entity, only varying in degree of severity, eliminating autism would have the effect of eliminating AS as well.

"Curing" or eradicating autism to eliminate the problems of 16-20% of the autistic spectrum population, at the risk of losing a large percentage of society's thinkers, would be horribly counterproductive. Given that the lower-functioning people have the same genetics as those with AS (as can be seen in identical-twin studies where autism and AS co-occur in dentical siblings), it seems much more reasonable to find out why some end up low-functioning and why some end up as geniuses, and see if there might not be a way to prevent the retardation.

No one wants to see people suffer because of sensory issues, frustration from inability to communicate, or to be unable to live without constant assistance, as is the case with many autistic people throughout their lifetime. That does not, however, mean that the whole group, necessarily including the more able autistics like myself, must be eliminated. The formula is so obvious to me-- eliminate the awful things associated with autism, and celebrate and appreciate the wonderful contribution that the difference between normal people and autistics brings to society. Don't wage war against autism-- if you win... I mean, if you really defeat autism...all of society loses. Let's celebrate autism, and help autistic people to be the best they can. We'll appreciate it, and society will be the benefactor.

Sunday, October 19, 2008

Family

We had the planets align yet again and packed the entire family in the minivan and had a great time. Even though we could not find the back seat's middle seatbelt fo 15 minutes, we went to a family gathering at my brother John's house. We've had strokes of bad luck over the past few years (more like we had a stroke of good luck THIS time) in that SOMEONE has always been sick or not available or we were tired or dead or something or the other. In any event, we finally got our butts out of the house, and had a very positive impact on the gathering. It was really good to see we were missed (we hadn't ALL been to a family gathering since the diagnosis almost 4 years ago). It was REAL good to see my dad up from Texas, even though we did not have more than 10 minutes to talk. Linda and I were busy chasing Liv and Gracie around. Kinda the 'childproofing' syndrome from our younger child days, except this was 'autism' proofing. Gotta watch out for falling lamps being kicked over; HD flatscreens being stimmed and banged on; and very small and delicate objects being knocked over.

We realize how MUCH we let slide in our house at home. How we watch out for gum in our house, but if it gets on the rug or the table, it's not a big deal. Yea, Liv didn't have a piece of gum there. We fed her rather than letting her feed herself. It was a big thing to have her even there; we weren't going to press it by showing off her eating skills. My three other kids were just PERFECT. They didn't start fighting 'till we were in the driveway and the key was out of the ignition.

Thank you everyone for being so good, so caring, so understanding, so perfect. We have so many things going on it is very nice to remember we have a whole BATTALION on our side. Sometimes I forget...thanks...

Sunday, October 05, 2008

The Battle for Sanity

As previously communicated, we have been plagued with frequent night wakings, this morning was day 27 of the siege. It really has felt like a war. Thursday night was the girl's Tet offensive...or maybe it was just plain offensive.

It started for Grace as it normally does this past few weeks. She wakes at midnight, finds herself lonely, and decides to seek out mommy for companionship. She goes into the living room and finds a warm body to seek comfort with. She curls up by her head and goes back to sleep. From the other side of the head, a potentially explosive situation is brewing, because it is not my wife on the couch, but my mother in law. She barely registers that a human body has taken residence by her head, being a cat person, these things are common at night. But, the sleeping arrangement becomes increasingly uncomfortable as the restless Grace uses her as a lumpy mattress. Finally, grandma can take it no more. "Gracie, you need to sleep in the bed on the floor." The first two 'Mommie'-s were that of a frightened child, who had the mommie morph into some evil bloodsucking monster. The next two mommies were of desperation looking for that lost mommie. It took several minutes to calm her back down, but she finally realized grandma was not in the bloodsucking mood.

Meanwhile, back at the girl's room, Livie has also woken up. Hers is a more complicated insomnia as she will wake up a little more than every other day, and her times are more varied. Linda's chance at actually sleeping in her own bed shattered, she moves into Liv's bed. I...am in for it...

The first and fatal mistake is I did not properly crush up the 1/2 Clonidine. Either it did not get in her mouth, or she spit it out when she realized there was an extra crispy piece in her regular teaspoon of applesauce. Without benefit of hindsight yet, I tick the minutes before the Clonidine should take effect. 3:45 should be the magic minute. 3:55, stiiiilll going, OK maybe she's a little more feisty tonight. 4:15, something is wrong here, I'm in trouble. I put back on the nighttime pull-up she's pulled off as she will have the habit of taking it off when she's bored. I am getting kicked when I turn my back on her and she demands gentle scratches, massages and conversations if I face her. 5:54 am- the final attack. I thought I had heard her take off her diaper again a few minutes before. I had rolled over facing my back to her. Suddenly, the biological weaponry that had been banned through treaty streams onto my back. That word that rhymes with duck echoes through the house as I carry her back into her room.

My wife said she was so close to uncontrolled laughter, but saw the expression I wore and thought better of it. "SHE PISSED ALL OVER ME" I said through gritted teeth, I deposit Liv in Grace's smaller bed and go back to my own to find a dry spot. After stripping the sheets and mattress pad, I still find a semi wet mattress cover (plastic coated, of course for just such an emergency). I insert a towel and collapse on the unmade bed. I don't even drift because I knew it would happen before it even happened... I knew it was coming... "WCBS radio, it's 6:08, time for traffic and weather togeth.." snooze? Yea, right...

I did surprisingly well for 4.5 hours of sleep Friday. On a somewhat positive note, Linda DID get more sleep than she had in a week. Grandma, who did 10 years as a nurse on the night shift seemed unaffected.

We have mounted an offensive of our own this weekend. Thankfully, Friday Liv slept and we hit the Clonidine correctly last night just right so I got some decent sleep, allowing Linda to work on Grace's habitual need for companionship. She keeps sending her back into bed, eventually lying next to her until she drifts off. We knew what Grace's insomnia was and how to deal with it, and had just been too exhausted to implement.

We're still trying to figure out Liv's issues. It could be some complex yeast imbalance, just plain old stomach discomfort, even a desire to pee in the middle of the night that she can't quite express. But we need to divide and conquer before we can assault her issues. An army cannot fight without sleep...