Summertime and the Livin's Easy?

Oh YEA! Time for summer vacation! 10 days away from work for me. Well... WORKwork. We still have a house to clean; laundry to do (aka Mt Colors and the White Cliffs of Whites). Three NT kids also need entertaining and persuasion NOT to kill each other. We also have two youngsters on the spectrum with a drastically reduced school schedule. It's a pretty universal fear amongst the parents of younger autistic spectrum children that they will 'lose' their skills over the summer. Schools either have greatly reduced programs or are non existent for those 'higher' functioning Autism Spectrum children.

Time to start supplementing with private camps, therapies and for those highly motivated and creative parents to create their own programs. (GROAN)...if only... If only we had the time, the patience, the extra appendage to do some of this ourselves. Get the other kids motivated to assist, become junior therapists. Draw up a schedule, have each girl get a half hour a day of one on one with one of us while the other one is entertained by the three others.

REALITY CHECK...REALITY CHECK...REALITY CHECK...

Linda has precisely 2 hours 31 minutes and 47 seconds of free time per day, which INCLUDES the time spent in the car going from therapy to therapy; including laundry and cooking time. A FedEx logistics manager has an easier job! The kids can be motivated to do individual projects, but a summer of assisting with therapies would result in a greatly depleted bank account; because promises would need to be made for trips to various theme parks and shore points in the area. The least of which results in 3 figure costs...

So, back in the real world, we scrape together what we need to send them to private 'camps' We have a wonderful autism non profit in Northern Monmouth in NJ that operates at a greatly reduced price to cover off on those spaces between spring and summer sessions and summer and fall. Swimming lessons/Sat. OT once a week for Liv. Since Grace only started school last month we hope that there won't be too much regression. I mean, we have the 3 other kids in some activities this summer, but I don't worry about their skills falling back. I guess I do, but it's not as critical if my son loses his division/multiplication skills as my daughters losing their socialization skills. It's part of that psychosis an autistic parent goes through needing to make sure we do all we can with the time we have.

I do feel bad for the three older ones though. We get requests from various parents that "we have to get together and do something with the boys. They're going to get bored." With all the therapies that still go on, with the school schedule that's STILL there in the summer for special needs kids, we're kinda hamstrung and can't as easily take them on excursions that 'normal' parents do. In that respect the phrase should be "summertime and the livin's guilty".

Anyway, no matter how you slice it, summer RULZ! Remember those endless summers when you were a kid. We have a gang of 8 kids all within 5 years of each other, a group of houses in a cul-de-sac that will ensure dawn to dusk running around, 1000 adventures, arguments, skinned knees, ice pops, ball games, lighting bugs, claw games, and seashells. Happy summer everyone, may they create a new month between July and August to keep it going even longer...

_____

With no relation to the post, here's a tie to the picture of Madam Marie's and to one of my fave songs about the summer:

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4th of July

Bruce Springsteen

Sandy the fireworks are hailin' over Little Eden tonight

Forcin' a light into all those stony faces left stranded on this warm July

Down in town the circuit's full with switchblade lovers so fast, so shiny, so sharp

As the wizards play down on Pinball Way on the boardwalk way past dark

And the boys from the casino dance with their shirts open like Latin lovers on the shore

Chasin' all them silly New York virgins by the score

Sandy the aurora is risin' behind us

This pier lights our carnival life forever

Oh love me tonight for I may never see you again

Hey Sandy girl

Now now baby

Now the greasers, ahh they tramp the streets or get busted for sleeping on the beach all night

Them boys in their high heels, ah Sandy their skins are so white

And me I just got tired of hangin' in them dusty arcades, bangin' them pleasure machines

Chasin' the factory girls underneath the boardwalk where they all promise to unsnap their jeans

And you know that tilt-a-whirl down on the south beach drag

I got on her last night and my shirt got caught

And they kept me spinnin' baby, they didn't think I'd ever get off

Oh Sandy, the aurora is risin' behind us

This pier lights our carnival life on the water

Runnin', laughin' 'neath the boardwalk with the boss's daughter

I remember Sandy girl

Now now now now now baby

Sandy, that waitress I was seeing lost her desire for me

I spoke with her last night, she said she won't set herself on fire for me anymore

She worked that joint under the boardwalk, she was always the girl you saw boppin' down on the beach with the radio

The kids say last night she was dressed like a star in one of them cheap little seaside bars, and I saw her parked with Loverboy out on the Kokomo

Did you hear the cops finally busted Madame Marie for tellin' fortunes better than they do

For me this boardwalk life is through baby

You ought to quit this scene too

Sandy, the aurora is rising behind us

This pier lights our carnival life forever

Oh love me tonight and I promise I'll love you forever

Oh mean it Sandy girl

Now now now now now baby

Yeah promise Sandy girl

Shala la la la baby

Could I be an Aspie?

In light of Autism Pride Day, I'm finally thinking that I come out of the proverbial closet. Linda... Lin, my wife, my love! It's not what you think! I have been analyzing my behaviors and may be ready to admit that I have...AUTISTIC TENDENCIES!

You have been living with me for almost 20 years and I'm sure you have noticed my penchant for playing air guitar or drums. If you've noticed, I frequently do this WITHOUT the accompanying music. I expect that this is a form of stimming.

I make pretty good money at work. This is largely due to the near instinctive memory of obscure system setup facts in my companies computer processes. Stuff that other's eyes glaze over on I have made a career out of. This may be one of my obsessive needs for knowledge that characterizes some autistics. Luckily, it's financially beneficial.

You'll also note that I don't have friends and I don't get out much. Not that I have a complete fear of social situations, but I will avoid them if the opportunity presents itself.

As you are so fond of noting, I do have difficulty focusing during conversations. My mind tends to wander, especially if i have to maintain eye contact, and I can't always absorb what is being said.

Which brings me to eye contact, which, as you remember, was one of my flaws which i worked so hard to overcome. I can do it now, but it's not exactly a comfortable situation.

Now that I know the terminology through all the therapies of Liv and Grace, I also note that I "script" on movie and television lines. I quite often relate to the world with anecdotes from movies; lines from movies become responses to questions or situations. By the way, does the flat screen hold a special place for everyone else, like it does for me? Movies, TV, computers all play a critical role for me in dealing with the world.

Lastly, is my infamous inability to focus. Distractions abound in my world; a good commercial; an annoying sound; and extra conversation in earshot will immediately send me mind away from that which I intend to focus on.

And of course there's Star Trek...

Now I only say these things half tongue-in-cheek. I wonder if these are all indeed DSM-IV criteria for ASD; sorry, I'm not about to look at THAT document and apply it to myself. But it makes you wonder if I'm normal (clearly, I am not, but then again, who is?). It also make you wonder how many more of 'me' are out there, with varying degrees of the symptoms I have,;living perfectly abnormal lives with their perfectly abnormal kids.

BTW, in the living room last night, that wasn't a stim, it was "How Many More Times" off Led Zeppelin I that lead me to the air guitar and drum burst!

Fathers Day Kobayashi Maru

For those who do not know the name of the ship Kobayashi Maru, without getting into the whole Star Trek lore, think of it as a no-win scenario. Linda faced hers last night. It is our tradition to let the other sleep in on special days like birthdays and Mothers/Fathers Day. Last night was Linda's test of character and she passed with flying colors.

I was out like a light last night and she heard (at 2:30)what she though was Liv's super low chant/stim (sounds like some kind of Buddahist mantra to achieve nirvana). When she entered the room, Liv was asleep but Grace was up like a shot, blankie and Nuk in hand and mouth. Sharing the bed with Grace is not really an option, she is much to fascinated and distracted being between the two of us, and winds up wandering the room, some type of bodily or property damage is inevitable. So Lin takes Grace out to the living room to Grace's little Dora futon, where as long as she has a hand on her head, no motion and darkness, Grace will return to sleep.

15 minutes into the living room exile, the real fun begins, with the REAL Buddah-mantra from Liv. Since there is no one in there to disturb, Linda and I psychic-ly agree to leave her in the bedroom to her early morning search for inner peace. The external peace however, is becoming problematic. The mantras now include the heal kicks into the wall which, during the daytime, are tolerable, but at night become a sort of dripping faucet to the 15th power (imagine construction on your house and you get the idea). I get up and bring her into my bedroom. Two minutes later, I get the offer from Linda for the better accommodations in the living room with a nearly asleep Grace while she gets the shift with Liv and the 45minutes-1 hour it will take her to be calmed down (including massages and maybe an occasional kick if Lin begins dosing off.

So I get the 'good night's' sleep, Linda gets the extra hour of sleeplessness. I was looking forward to sleeping until 9 this morning; but this is NOT how I wanted it to go down!

HAPPY FATHER'S DAY TO ALL YOU DADS OUT THERE!

Makin' the B B B B Sound With My Lips and Index Finger Again...

Just another standard weekend from hell...


Friday, up early, Grace sick. IEP in the morning, she's with us at the meet, concentration difficult with Dora recitation in the background...Speech therapist finally helped us by taking her for a walk while we talked about Liv's progress. Bright spot of the weekend as Liv's doing very well. Doctor in the afternoon for Grace, ear infection. I get the grammar school pickup in the 90 degree heat. Lin gets the after school shopping trip for the birthday party supplies for Saturday's party. Somewhat crazy evening.


Saturday morning, another sleepless night as Grace continues to hack through the night. Cancel the girls going to Saturday therapy. Gather together party accouterments for noontime party. Mother in Law arrives 15 minutes before we are to leave, with our two new 'houseguests'; two of her cats. Takes a combination of cold logic about being late and various threats to get kids away from new cats and out the door on time.


First part of swim party goes off without a hitch (of course, because they're occupied in a pool!). Make the mistake of overestimating eating time; 15 minutes before party is supposed to end, I have 15 nine year old boys hopped up on pizza, cake and caffeinated soda in a small hot room with nothing to do. Swear I had this nightmare before, having 3 times the amount of kids and no way to control them...


Saturday afternoon/evening: cat saga continues. New cats are hold up in the garage, old cat is afraid to go in (food and 'relief' located in garage). Birthday son suddenly has burning cash and a burning desire for something his cash matches: a Wii. He and Lin go out to just stroll into the local Toys R Us to buy one. Lin calls and informs me that strolling did not work; she's going to try several other different store chains to see if stroll works there. Meanwhile, old cat winds up relieving himself in a small cardboard box right in front of us. We discover blood in his urine, and have to find a new place for the Dora puzzle. We find a 7 day vet within 10 miles of us for tomorrow morning. Cancel planned visit to relatives for tomorrow.


Sunday morning, double whammy last night; Grace at 1 am, Liv up at 5. Lin got 1 am, I got 5. household consciousness occurs around 9 am (using term consciousness loosely). 10 am call to the vet yields a 1PM appointment. 10:10 AM call to Toys R Us yields laughter as the 50 Wii's which arrived Sunday morning were sold out within minutes. Online elicits virtual laughter (or greatly inflated prices). Cat goes to vet; gets minor cystitis diagnosis. I get a 'break' waiting 30 minutes for urine sample analysis as I and vet were lucky to get sample. Alternative involved an empty litter box, a syringe, a fridge and another trip to the office which was, shall we say, undesirable. Arrive back refreshed and exhilarated as kids have been cleaning room for use as temporary cat storage.

Sunday night, weekend of fun an frolic begin to ask for the tab to be paid. Laundry not done, kids not properly up on homework, dishes growing from neglect, supliments need mixing for the week, parents begin hallucinating from exhaustion. Forgot to watch everyone get killed on the Sopranos.

Monday Morning 3 AM: Woke up to stars in my eyes as Liv was in our bed and had inadvertently smacked my eye. Get up at 6:30 so that I can get out and go relax at work. Load dishwasher, get 5 bags of garbage outside, awaken children and RUN LIKE HELL!

Speaking for Those Who Cannot Speak

Or is it speaking for those who cannot articulate; or acting for those who cannot speak; or just plain raising a child? Which direction am I/should I go with regards to the betterment of my young autistic children?

Are we experimenting with biomed (obviously), ABA (possibly), speech, OT, physical therapies (could be)? We have this unprecedented opportunity with early diagnosis to figure out what is the best way for an autistic child to learn. Why shouldn't we try or why (better yet what or when) is it wrong to try? Aren't we trying to see what autistics need early in life, when they could most use a way to communicate, control their issues of concentration, help their functionality within this neurotypical world? I feel we are at square one with autism therapy/training and parents of young uns' are stuck holding the research bag.

It goes to my original shock of the neurodiverse attage of understanding without changing. Even the most fervent of the 'diverse' of the neurodiverse must agree that something should be done for a young autistic child, the issue is always what. What is invasive? I see a lot of talk around the objections to what is deemed as trying to make a child look and act more 'normal'; but for me, it's a blurry line between normalcy and improving a child's condition. My example is my 3 year old, Grace, is having trouble with transition. I think transition is not necessarily an autistic trait but it seems like the work to get Grace to transition easier is made more difficult by her ASD tendencies of wanting sameness and control over her world. Writing that I am again confronted by what is 'normal', what is pushing too hard, what is a tantrum of a three year old vs what is an outcropping of an autistic tendency.

It's back to 'difficult to get it'; how do we take these therapies, these studies, the politics, the day to day existence and desire to make things 'easy' and mold them into a cohesive attack (oops, thorry, used a military term) a cohesive strategy of giving my children what they need vs what is best for me? Kinda between a rock and a hard place, dancing the line between all of what the schools and science says should be done vs what an autistic adult may consider crossing the line into 'normalcy indoctrination'.

The people looking at the neurodiverse movement have to see the symbiosis between the autistic parents (parents of autistics) and the autistic adults. Autistic adults need to look at the opportunity to assist the next generation with advice and guidance; the parents need to look at the opportunity to change the views of the schools and the system to a view of assisting the growth of this generation vs societies attempt to create NTND's.

Why does Hamlet's soliloquy seem to keep popping in my mind with regard to the decisions that I need (want, could) make for my children:

Thus conscience does make cowards of us all,
And thus the native hue of resolution Is sicklied o'er with the pale cast of thought,
And enterprise of great pitch and moment
With this regard their currents turn awry And lose the name of action.

We are in a position to do something (that clock is always ticking in the back of my mind,though I try not to listen). It is a great noise coming from all angles about what to do, all we really want is what's best for them. But is it action or inaction that we should be doing? Is it their balance or ours that we are seeking?

It's Not Easy to 'Get It'

I just watched a You Tube video by Christschool and I agree with everything said on it about how non autistics can be allies in the neurodiverse movement. But it got me to reflect on the journey that I have taken to get to that position. It's not an easy thing for a neurotypical parent of an autistic child to arrive at a place where they understand the neurodiverse movement; I won't say truly understand because, being on the outside looking in, you cannot truly appreciate the situation autistics are in, kinda like a white person trying to get in the shoes of a black person. We can empathize, but we can't really understand.

It's real easy to fall into despair when you first receive your child's diagnosis of autism. There's the 'you have terminal cancer' attitude you get from the doctor. The shock that your initial dreams for you child have been shattered. That your life has taken this bizarre left turn, and the road ahead is dark and foreboding. Unless you have disability in your immediate family, nothing can prepare you for this.

Getting through my denial portion of grief, I ran headlong into anger. I remember anger at my first brushes with people who actually saw autism as something more that just a nightmare that I had just been thrown into. "How can you actually want to keep THEM the way they ARE?" I said to my wife and posted several things to that effect on some boards. The idea of not wanting a cure for autism was repulsive to me. The people advocating this position were abhorrent and uncaring of my daughter's plight. Being told that I was similarly repugnant for looking so hard to 'cure' her of this 'disease' further confirmed my suspicions that their souls we headed for eternal damnation.

Then Amanda Baggs' Getting The Truth Out photo essay hit me square between the eyes. I followed the link off of a board and went through the first half of the slide show which ran along pretty close to my perceptions at the time. How horrible; what CAN we do to FIX her? The second half, and the sudden juxtaposition of advocator vs advocatee, caught me so off guard that there was a paradigm shift in my thoughts of what I was doing and why I was doing it. I admit that I did not get all the subtleties being put forth as far as advocacy, but I did get the point that there is more to my child's disorder that something that needed to be defeated.

I gradually went from exorcising the autistic beast from my child to discovering what I could do to help her and myself deal with the issues that would be there for the rest of our lives. By the time we discovered our youngest was probably on the spectrum as well, I had a different perspective on what it meant. I will not deny that thoughts of a 'normal' life are still not appealing; but I no longer view 'normal' normally anymore.

My moment of clarity in all this is that parents have to deal with this new and different life; to my children, this is the only life that they will ever know. There is no grieving process for them. I guess that's where there is a difference in advocacy between the autistic and the parent of an autistic. Parents have to deal with the loss and change; in that sense we have a certain core of selfishness, no matter how much we sacrifice for our kids. We're mourning what WE'VE lost, not what THEY'VE lost. Autistic children haven't lost anything, but they'll need parents' help to gain everything. The sooner I can shake off that life that has never nor will never occur, the sooner we can get to work.

Is it the 'Haves vs Have Nots'?

Even though I am not a member of the exclusive group known as the Autism Hub, I still feel I have a place commenting about it. Being a biased outsider, a parent of two on the spectrum, with radically moderate biomed tendencies, all I can offer is perhaps a woods view of the trees being talked about.

If I could be permitted some gross generalities into the mindset of autistic, it appears to me that many autistics I read on the internet are seeking order. One of the traits of autism is the need to have an order to life. Some may seek order in their universe by keeping things the same. Others, I think, might have a need to 'fix' the universe around them; seeing the world as it should be and seeking to go in that direction. I'm not sure if it's a trait of autism or of certain types of individuals, but many seek perfection in their worlds. Whether it is attacking the wrongs of society; exposing quackery; or creating, to a certain degree, a level of controversy within the inner circle of 'their' society; it's that seeking of perfection that drives us in the sometimes divergent directions we choose. Since no one knows what perfection is nor what is the best path to get there, disagreements will arise.

I guess we all, NT's and ND's, are seeking some sort of perfection in our lives. I say that with a bit of trepidation though, thinking of the possibility that I may have autistic tendencies myself (trying to put it into a cohesive blog for the future). I'm not sure whether I am part of that group called neurotypical, neurodiverse or some no-man's land in between. It's at once a revelation and an uncomfortable thought that I may not think like a 'typical' person. But I think that's more about a universal fear that everyone is an island; that despite our similarities, we are all alone in our shells with our own unique thinking patterns. Perfection may be a little more of an obsession in autism, but it is innate in humans themselves.

It comes down to autism being a specific, perhaps the first, neurological disorder that has tried to step back and say, "Hey, maybe we don't NEED fixing". I'll be funny and say the schizophrenics were too busy arguing with themselves; the ADHD people couldn't concentrate long enough to get a movement going; the manic depressives were either too busy or too bummed out; and the OCD's couldn't quite get it just right. But, even with the obvious disadvantages of autism, they can rightfully point out the neurological advantages as well. The bias against autistics can easily be compared to any bias against disabilities in general. The way will be plowed by the autistic adults today if my daughters are to have a fighting chance in the future. So, I have a vested interest in their success.

I was going to talk this one through to say that the disagreement between the autistic adults and the parents of autistic children is about who gets the funding and who gets left out in the cold. With all the focus on the autistic influx of children into the governmental system, it leaves the autistic adults scrambling for the scraps of funding. I doubt this plays a role in the current disagreement on the Hub, but it has to be on the subconscious of everyone's mind. My kneejerk reaction will always be to take care of my own first, the educational aspects of autism and getting school systems to recognize the need and the advantages of catering to those younger autistics. But parents must be equally as vigilant at fighting those issues affecting autistic adults as well. Discrimination; funding for proper medical care and housing for those in need; job training and retention; these will all become our children's issues in a heartbeat.

In this sense we are inexorably linked to a single cause. There are certainly areas where we do not overlap, but there are more than enough common bonds that can and should unite us to a common goal- the right to exist; the freedom from discrimination and the goal of a happy future for all peoples on the spectrum. I kinda stole that last thing from the Declaration of Independence, but I feel that what is being argued here...independence.

Cursing

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!

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...

Moms

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

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 mystery...at 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 Wipes...now in the economy size!

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...

Are we Alone in the Universe

Maria Lujan (someday I'll learn how to to the 'acentos sobre'!) got me on a thought and I thought I'd try to expand on it. She put as part of a comment on 'Crisis of Opportunity' :

and I feel as alone as in the beginning, 3.5 years ago- except by very few
exceptions-, in the understanding of what is advocacy for my son

I guess what bothers me about the whole advocacy situation is that 'aloneness' you mention. We recognized the symptoms in Liv, told the doctor and the doctor sort of told us we should wait, it's some kind of phase. So we were alone until we finally found someone to agree there was something serious going on with our little girl. But after that we found ourselves alone again to try and figure out what to do, with little more than a pamphlet and a prayer.

I remember distinctly the day Linda called me up at work and said "Do you know NJ has some kind of program that will PAY for her therapies!" Gee, you'd think that would be one of the FIRST things they'd tell you! Before that, we were trying to figure out how we were going to scrape together $20,000 to $50,000 to finance the 30 hours a week of ABA that the pediatric neurologist recommended. Wow, did we feel al0ne before that!

Once you get the therapies, you are alone again to figure out what your child should get. Speech, OT, ABA. Geez just finding out what OT WAS was a challenge. For the most part, you still feel that there is a certain level of we and they between you and your caseworker, so your isolation does not end.

When Early Intervention ends and you're thrown to the mercies of your township, again, you are on one side: the ignorant, ill advised, ISOLATED parent. You're fighting for the mental life of your child and you have to make sure you don't say words like 'I want' (what don't they just make you say 'mother may I', make it like a game!). Unless you've done your homework and/or you've hired an advocate, there's not much on your side. It's very hard to know whether you succeeded or failed, because there's no one to benchmark from, no one in your exact circumstances.

Let's take a break from this isolation talk and say a big THANK GOD for the internet. All these blogs and discussion boards made us realize that despite our apparent isolation, we had literally hundreds if not thousands who were there, are there or will be where we were in the near future. I'm convinced I would have gone off the deep end without this outlet (and inlet) called the internet community.

Despite all that virtual support we are still in this advocacy battle on our own for the most part. I don't know about you, but I feel uncomfortable talking to parents within my district about services. I feel it's like talking to coworkers about salary, it's almost taboo.

I almost feel like even within the household we are alone in our advocacy. Linda and I are so busy doing our things for Liv, Grace and the other three that we sometimes don't get to talk about goals, details of therapies and fears of what can happen.

Each person is their own island it is said, I guess dealing with autism puts that island further out in the ocean...or the universe.

Refugee, Part 2 (The Promised Land)

We had made up our minds that the area we had lived in for almost 12 years was not going to be a right fit for Livie. Now came the epiphany that we had about 4 months to find a new house, prepare and sell our old house, pack and move!

We made about a half dozen weekend excursions to Monmouth from before Memorial day until just after the 4th of July. After a dozen or two views, we kinda settled on a slightly smaller house in favor or a fantastic location, on a cul-de-sac with a family with four kids across the way! Even better, 4 of the 5 schools our kids would be attending were less than 1/2 mile from the house; that compared to 15-45 minute bus rides at the old house. I suffer the greatest with the commute, anywhere from 55 minutes if there is absolutely no traffic, upwards from 1.5 hours all the way up to the current record of 3.5 hours when a major artery is closed.

Meanwhile, we interviewed a couple of real estate agents. The first one, I wish I could have recorded! Your typical upper-middle age real estate with an aversion to germs. We found this out when she came to the door and I announced to her that we had a cold going through the house. Actually, it was Strep, I think. Me with my best Eddie, from the National Lampoon Vacation series saying "Yea, she's got a lip fungus they haven't quite identified yet." Her hands shot up like a surgeon who had just sterilized, she would touch NOTHING! She walked around the house like this sterile surgeon, not touching a single surface, she made ME open all the doors! I think she went through a half bottle of Purel. Clearly she wasn't a match for our 'infestation'.

The next lady was quite nice, smaller agency, but she seemed like she could sell. Before we signed though, Linda remembered a fleeting comment one of our ABA therapists had made. She had loved our new addition (my new addition, I LOVED my new addition ) and had said "let me know if you ever want to sell." As those who go through early intervention with therapists coming into your house, you get to know each others' lives pretty well, and we weren't sure if her and her husband were ready for the financial burden of a house yet. Long story short, we asked and she lept at the chance. What friggin' luck! Selling our house with no agent, no commission, sight, all-too-often seen!

OK easy part done now comes the NIGHTMARE! A house full of stuff accumulated over 10+ years. We are NOT organized, we hadn't intended to move not 3 months ago. We had recently expanded the house and commensurately the junk had grown (clutter is organic and expands as does other things in our household as I have previously explained). We had begun to clean up in anticipation of trying to sell, but now it was a full scale emergency.

We rented a self store, filled that up in a heartbeat, got a 20 foot dumpster, had to jump on that the night before to get more stuff in. Remember, through this Late July through August, Linda STILL has and infant, a pretty hectic 20 hour a week ABA habit, and three other kids to boot! I'm taking days off when I can, but I'm saving most of my time for the big move. We hired movers and had them help us pack. Registering for school, getting closings ready, major project going live on Jan 1 for me at work. Our lives were this cyclone of MADNESS!

The day of the actual move was the zenith of the craziness. More like, it was the spot on the roller coater where you finally hit bottom and you are just deciding that this was about twice as fast as you wanted to go...but there ain't no going back now. The movers were late and kinda underestimated the time needed to pack up the vans and get down there (I'm STILL packing stuff while their moving boxes etc out). Luckily we did not have to have the place completely
The caravan gets down to the new home around dusk. I can remember making snap decisions about where things should go, no tools to remove doors, something about not being able to move our fridge into the kitchen, vague memories about being talked into having the vast majority of the boxes loaded into the two car garage (note, the garage is STILL half full with boxes nearly TWO years later!). I just wanted it done, and the movers out of my new house and new life.
We survived that day, night and most of the ones since. Liv did have some pretty major regressions over the months before, during and after the move. The other kids have learned to adjust. Aly, in particular is slow to warm up to people and make friends. She had a few friends in Sussex Co; now she had to start all over again. When her one friend here moved away recently, both she and we were heartbroken. Dillan and Jason now have four boys to play with in the family across the street, another just a fence jump away. I envy the endless summers they are having and will enjoy in the future; they have the run of the cul de sac, a football sized playground from our backyard across the cul de sac into their backyard.

Well, there it is. I cannot do it justice, the absolute insanity of that summer; but here we are with twice as much as we could ever dreamed of as far a services for Liv compared to our old house. For that, I'll never regret the move...

Refugee, Part 1 (Oppression that drove us from our 'country')

I was inspired by the Mother'sVox post AUTISM MIGRATIONS to recount my exodus from the oppressive, conservative-minded viewpoints of the northernmost part of the NJ to the more centerist leanings (more leftist in its taxation and spending of revenues) of of my new home in Monmouth County NJ. I gauged it out, and it looks like I can have a blockbuster and a sequel. There's just too much to cover on one post.

It was the best of times, it was the worst of times. We had a house that we adored and a 40 minute commute I loved. It was 'God's Country' up in the northwest corner of the state. We had been working for the past 10 months with early intervention for our daughter who had been diagnosed autistic just under a year ago. We had a very good team for Livie; but it was to be swept away at the age of 3.

Our first meeting with the township social worker was not exactly reassuring. He had reluctantly confided in us that this was his first transition from an early intervention into a preschool setting for an autistic child. Great, maybe we mold this township into a model of autistic services (no, really, I wasn't being sarcastic at the TIME!). We had done our homework finding various districts who we agreed with their processes. We were mostly looking for the Verbal Behavior method of ABA and had about 5 schools within a 45 minute radius that we wanted to look at and another 5 we had as a backup to appease the budget gods in the town before we backed them into a corner and forced into our way of thinking.

We gave the social worker the list, all ten. He said he would contact them and see if we can arrange a look-see at them. He got back to us about a week later with a much MUCH shorter list. This one was not accepting any new ones, that one we couldn't get etc etc. We were down to 4...ALL from our 'backup' list. We dutifully went through three of those and had one that had basically 'play therapy and one that focused on the Miller method. Neither was even close to what we were looking/hoping for (preference was for a Carbone-type ABA).

The one we finally chose was the Miller location. It was a 35-45 minute bus ride for Liv, but the people seemed genuine, the parental support seemed OK and the program somewhat promising. We signed on the dotted line.

We got out of the IEP with decision in hand, we were somewhat celebrating, my mother-in-law was watching the kids, we went out to lunch. We had navigated the IEP process and we had Liv enrolled in a school. We talked positively about the outcome through lunch, mostly the ins and outs of the meeting itself. We left the restaurant and headed down the highway toward home. I had an overwhelming sense of impending, not doom, but mediocrity. I finally said "We settled, didn't we.... remember all the things we wanted? Remember the schools and the ideas we REALLY wanted? Remember the schools that we were going to look at 'just for comparison'? Well, those were the schools we were CHOOSING from."

"Where can we go though?" Linda said in desperate realization.

We had paperwork upon paperwork on autism, and we were accumulating a large 'Favorites' folders of things to read on the internet whenever we had the chance. One of the things we had was a COSAC of NJ list of recommended schools. Great little piece of info telling what method each school system followed. Linda was browsing through this list and asked me how far down Monmouth County was. I cringed, most of my experiences with Monmouth were in the southern half and my commute would have been a minimum of an hour and a half. "They follow CARBONE in this town!" she sad excitedly. So, I looked up the town, just to appease her, she knew the outer limits of commute time would have been an hour (no traffic). Luckily, it was in the northern part of the county, just under an hour commute with a tailwind, if no traffic, and if no state troopers!

We began looking to fit this very large square peg into the small round 'holes' of houses in the neighborhoods serviced by this school.

OK, good breaking point. Stay tuned for Exodus II- The Search for Services coming to a blog near you ....

Racist Ken and Barbie

One of the ways I cope with the life I have chosen is through humor. My humor is of the ilk of a Robin Williams; a no-holds barred, stream of consciousness, bizarre inter connectivity of the world. Case and point, I found my daughter playing with some dolls. Let's slip into diagnostic mode first. I love the fact that Grace, my youngest and 'mild PDD' for lack of a better diagnosis for a pre 3 year old, is playing with dolls, although much of her playing is really scripting of Dora episodes involving dolls of Dora, Boots and Diego. She will recite much of the lines in an episode, but I still like that she is somewhat role playing.

Anyway, to get back to the sick humor of the situation, Dora, Boots and Diego were joined unexpectedly today by two new characters. Ken and Barbie had joined separately on two different situations. Grace never gave them voice, but I did. "Hello, Hispanic children and strange monkey, do you happen to know where Barbie's bungalow is?" Ken said. I imagined him and Barbie as vain, bigoted, Southern California airheads. I'll not get into the biased viewpoints of the couple, as we have standards here, even on the internet. But you can imagine what the two would think and say to and about two kids not of the white, Northern European stock. I had Linda in stitches all afternoon though.

I'm surprised Robin never got himself into more trouble…

Autism night at TGI Fridays in NJ

I'm moving this one back to the top so that all you Jersey folks might try and get a good meal next Tuesday (TGIF may never be the same again ;))

***UPDATE*** Fortunately for TGIF, we were not able to attend, I got stuck trying to get around all the flooded Passaic River bridges in Paterson. HERE'S a link to TGI Friday's comments section so you can all tell how happy you were to here this was done in NJ and maybe they can do it nationwide next year!!!

This one came from our old therapist who is trying to disseminate this information for an obviously strong, and in her way, courageous young woman. I will use my very limited audience to help spread the word. I haven't a clue why this did, but it made me well up that this young woman saw this opportunity to help those families affected by autism in a very small and personal way, hope to see you there (the TGIF in our area will never survive the 7 of us going there, but we may just try):

To Whom It May Concern:

Could you please make copies and distribute this letter and flyer to all the families in your school. Also, if people could spread the word to their friends and family who have children on the autistic spectrum that would be excellent!

My name is Alexandra Abend and I have an 8 year-old brother with autism. I am a Junior in high school at Kent Place School in Summit, New Jersey. I was elected 1 out of 44 girls in the entire country to participate in a women's leadership conference hosted by Mount Holyoke College called Take the Lead. At this conference we were each asked to come up with a social action project topic. My action project topic is making families affected with autism feel comfortable and able to enjoy a relaxed family dinner at T.G.I.Fridays. I have already spoken with all the general managers in New Jersey for T.G.I.Fridays and they are all on board for the project. It is called Autism Family Night; it is taking place on April 17, 2007, it is only taking place in New Jersey this year. The families can go to any T.G.I.Friday's near them on April 17, 2007 with the flyer in order to make their meal more enjoyable.

This is important to me because my youngest brother was diagnosed with autism six and a half years ago and I have been extremely involved with autism and other special needs ever since (five years ago my father and I started a Sports Clinics for children with special needs and we have been running it ever since).

This project sometimes sounds confusing because people ask, “What's the project?” So, to make it clear, all I am doing is designating a day during Autism Awareness Month (April 17, 2007) for families affected with autism to come together and enjoy a relaxed family dinner without feeling stigmatized or uptight. In an effort to make the night more enjoyable for the families, I have given all the Friday's in New Jersey information to disseminate to their staff, which explains autism and some associated symptoms. This project is very special to me, and in order for it to work I need your help in distributing this flyer.

If you have any questions you can contact me at abenda08@kentplace.org, or if you receive any questions about the event you or those people can contact me at that email address also.

Thank you for your help and support.

Alex Abend

BTW, I have a PDF FILE of the flyer she mentions (yea, it's on COSAC's site finally).

Health Crisis or Crisis of Opportunity?

I started writing this as a reply to Harold Doherty's blog on the impending health crisis brought on by the increased diagnosis of autism and the lack of urgency in both the US and Canada for the generation about to impact the coffers of both countries as they turn to adults. I decided to see if I could expand it into a cohesive coherent post (fat chance, but here it goes anyway!)

I fear that Ms Dachel is more concerned with trying to prove the mercury/autism link than trying to help those affected by autism. She's trying to 'save' those poor souls about to be impacted by a lifelong illness and if she could just garner enough support, a 'cure' could be found. In short, she favors finding causations over treatments. While her goal is admirable, you don't just 'find' world peace or a single cause or 'cure' for autism.

We do indeed need to find better ways to circumvent, to mitigate, to eliminate symptoms of autism. The inability to communicate, the self injurious behaviors, the sometimes violent outbursts, the inability to concentrate, the lack of life preserving fear are some of the things that need to be worked on to improve the condition for autistics and their caregivers. But isn't it more an educational and societal crisis with some medical undertones than it is an health epidemic of mythic proportions as Ms Dachel likes to portray?

I would also like to put forth that those autistics writing essays may be some of our best advocates. The ones that can show society that these people are not just mere throw away, institutional-bound burdens on society. If we can get past the communication issues; the self injurious and violent behaviors; the ticks and stims, we do have potential productive members of society. Even if these autistics are the exceptions rather than the rule, don't they serve as benchmarks to show what CAN be achieved?

Part of my problem with this whole impending 'crisis' attitude as if pertains to the aging out of these 1 in 150 is that we honestly don't KNOW how many more children are seriously impacted. Do we truly have a large upcoming adult population of autistics that will need services or do we just have a handle on classifying a group of people that were just there to begin with? Do we have a brand new entire group of non verbal autistics coming up that will overwhelm the system with tsunami-like power? Or do we have better classifications of those formerly labeled as mentally retarded who now have an opportunity to be better helped because of the new classifications?

I honestly don't know what the next 10 years will bring. I'm pretty sure it will be somewhere between the budget shattering catastrophe that is being predicted by Ms Dachel, and the Y2K dud of a firecracker being foretold by some on the autistic advocate side. We simply don't know what positive impacts early interventions will have; everyone can agree that widespread early intervention and early diagnosis for that matter have only been around for less than 10 years. Most of this new 'autistic generation' aren't even teenagers yet. We simply don't know the impact of having many kids 'reclassified' as autistic instead of generically mentally retarded will be. Will the better understanding yield better results? We simply don't know how many quirky kids were missed in the past who were really the Aspergers we classify them as today.

Granted, there are enough challenges facing us over the next 10 years with regards to autism to fill a stadium. We do need better strategies for therapies for each 'color' of the spectrum. What we don't need, however is someone telling everyone the sky is falling or is about to fall. We need people like yourself, Mr Doherty, to get up there and show Parliament what you know and what needs to be done for these groups. I have no doubt that you have, you do, and you will continue to advocate in the future. We have their ear (somewhat anyway). Let's not shout in it, let's talk it through with them and work to mitigate this autistic Y2K bug on the distant horizon.

Just A Boy

I met a father and mother with an autistic pre-teen in the doctors office. We spent a little time talking to the parents and the one thing that struck me was the mother saying, that he understands EVERYTHING. He was non-verbal but looking at him and his mannerisms and his eyes, I could tell right away that he was there inside. He had great difficulty getting himself 'out', to say something, to react and interact with the environment we have for him. I told him as he was going in "See ya, do your best". I really did not know what to say, I had no magical words of encouragement to make him understand that he could maybe get passed all this.

I'm sorry all of you that find the the good in these situations; believe me, I find the same joy there as well. But this child NEEDS something. I'd like to say 'cure' but I know that is not the PC thing to say. But his autism is paralyzing him; MANY children are being paralyzed by the symptoms of autism. I'm not so sure that "hey, we're happy, everything's going great here, thanks" is the attitude to portray to everyone. I know, the 'life's horrible for the parents' angle is no good here either, but what about for the child? How can we extricate him from his prison? What if, God forbid, his parents are not as in tuned, financially stable or patient as the parents I met. Can society find and help these kids?

I dunno, I know I should not feel pity, but I did. I felt sorry for his situation, that he may never find his niche in life. Just like the NT may not find the right profession, the right soul-mate, the right education to achieve all they can be; it is 100X more difficult for an autistic person, especially one as profoundly affected as this child. I'm glad he had seemingly caring parents and he will gain every opportunity they can give him, I just fear for him because I think I know what he could be capable of and what his chances of actually achieving that capability are.
Sorry to be on a downer just before the Resurrection, I just hope he can find that miracle that will bring him new life...do your best...

Support Your Local TPF-TFU

Dillan came to me yesterday and said, with a hint of pride "Just to let you know, I changed the roll."
"The WHAT?" I snapped, somewhat grasping the concept.
"The TOILET paper roll!" he said.
"You mean, you didn't wait for the Toilet Paper Fairy to replace it?" I said with enough of the nick in my eye to let him know I was about to riff off on this concept. "Yea, he's a BIG guy, cigar in his mouth, plunger instead of a wand; comes out of the back of the toilet. I just assumed that EVERYONE in this house believes in him. After all, no one EVER changed the roll...until today."

Remove the little children from the room (and some adults)...... OK, now that we're alone, and we all understand that the Toilet Paper Fairy does NOT really exist. I am normally the winged creature in this household, bringing happy absorption to all good little believers. You all must know those believers, those leaving the brown cylinder on the roll in wistful anticipation of catching that little imp changing the roll. If you stop believing, you will wind up stranded on the toilet with a pot to piss in but nothing to clean it up with! Linda claims to be on my side, but I frequently find her setting traps for the little fairy in hip waders.

OK, I'm getting out of the business. I'm no friggen leprechaun, no fairy in tights, (well..every once in a while ;)) nor hip waders. We're unionizing the The Toilet Paper Fairies and merging with the Tooth Fairy unions. The TPF-TFU will fight for better working conditions (more stealthy abilities, better 'drugged' targets, vacation, hospitalization for those times that 'Bubba' gets us with the shotgun, etc.). If demands are not met, we will be picketing your child's bedroom as well as bathroom. If that does not work, we have 'muscle' in the form of closet monsters; so if you want to sleep (and sleep alone), you better meet our demands.