The Deadline...

I remember, in a somewhat haze of the stupor of my early 20's, waxing eloquently with my friends about where we would be on January, 1 2000...at the new millennium. How OLD we would be, what we would be doing (and how we would all meet at the same local park on that night no matter what GAACK!).


I had another date that I looked 'forward' to recently, not with the same whimsical idealism, but with pressure and loathing: August 27, 2007, the day that Liv would turn 5. During our 'indoctrination' phase of the autism disorder three years ago, we had this idea of a ticking clock; this clock ticking off the time when she reached five years old and her brain would solidify. The time when it would no longer be possible to change who she was; that whatever point she was at with speech, socialization and attention would be how she WAS for the rest of her life.


This was one of the first things I remember when researching autism 'recovery', that whatever we were doing MUST be done early. God help those who wait. If you didn't start until 3 or 4 or God forbid 5, you'd be fighting with 2 strikes already against you. You better get your therapy going and you better cram it all in before 5, because the timer's ticking.


It was the finishing line, too. Where all the hard sprinting we had done for three years would show us that we had accomplished our goal. That Liv would be speaking, that the isolatory behavior would be gone, the social issues would be a thing of the past. We had this vision of a few months of really hard work with early intervention, then we would be richly rewarded for 'putting our heads down' and putting in the hours early in life. Then we would walk off and go back to a 'normal' life. Liv would be free of autism and we would be back to our neurotypical world.


I can't exactly pinpoint when and if it has stopped becoming a race. Our hope for a quick change back to speaking was definitely one of the first indications that this was going from a sprint to become a marathon. The more we read the more we realized that this 'cure' was a mirage, that there were many different types and degrees of autism and that Liv was not one of those that you would snap your fingers and she would talk, would stop stimming, would become 'normal' again.

We had visions of biomedical interventions being the panacea that would relieve us of the burden of having a lifelong struggle with autism. That magic pill turned out to be non-existent as well. Research has lead us to the conclusion that there are no easy answers as to causes OR cures. So everything we do now has turned from 'curing' her autism, to helping her deal with any discomforts and issues she may have.

By the time Grace was diagnosed some 18 months later, we were neck deep in autism already. We also had the child that we were 'prepared' when Liv was diagnosed; a child with less issues, more progress and better outcomes and expectations. But it was too late, we had changed already. We knew what to do, we did it, we had different expectations; I guess we hoped for the best but expected the worst.


But we still feel we have that pressure there to a certain point, but we have learned to ignore the clock somewhat. But that drive to do everything possible for her and not miss a beat is always driving us batty. Linda will try her best to manipulate the schedule to get every possible therapy into the day. She also devotes her 'free' time to researching and implementing various nutritional and suppliment regimens. All this within the confines of keeping our daughters happy and not overwhelmed. At some point, she/we will have to say when: emotionally, financially and physically. There is simply only so many hours in the day; so many dollars in the bank and so much tears and sweat that can be shed. We've run out of hours, we've run out of money, we've run out of expectations for miracles.

The reality is that autism will be with us for the rest of our lives. I've discovered that doesn't necessarily mean the end of our world or their world. There IS life after 5, and it can be as wonderful as we can make it. There will be challenges, and we certainly haven't given up on Liv or Grace, we have just adjusted our high expectations to something different. I'll not share them because I imagine that 3+ years from now they will change again. I just know that Liv has a long way to go; but she has strong legs to make the journey, she has a strong will and a strong mind to get her there. Grace, fugetaboutit, she's shown us the bridge between the two worlds, she'll be fine...

We're all in this for the long haul, the deadline is passing as I write this. I am a better person for it. Liv, well Liv is and will be who she is, I can only help her become...

Oh, Yea, Happy 5th Birthday Liv! Love, Daddy

Dad Moments

OK, OneDadsopinion has forced my hand and I have to write some of my dad moments (especially since he's got a link to my blog on his site...thanks).

I guess this doesn't have to be autism specific, although you know most of it usually directly or indirectly orbits the girls, but each will get a moment anyway:

Aly: This little sweetheart answered my call and got up at 6:45 this morning to watch the girls so I could get out to work a little early and Linda could get a few extra minutes sleep. She got four 'pressed pennies' from the Parkway rest stop that I was promising.

Dillan: Gave up the pressed penny Aly gave him, just to make his brother a little happier. Remind me to give him that Triple Chocolate Klondike Bar I hid in the freezer.

Jason: Was told by Liv and Grace's day camp school that he is SUCH a great brother for helping his sisters and mommy getting in the school by carrying bags and opening doors. Mom couldn't do it without him. He got the pressed penny...

Liv: Has been lying on the pillow facing me on the other side of the pillow as I try to get her to sleep and she just smiles and beams, I even get the occasional quiet "dadi"! Don't know WHAT I could possibly give her to pay for that!

Grace: The "DADDY DADDY" at the top of the stairs while rattling the gate when I get home, gives me the energy to get through the last push of the evening getting everyone to bed. I opened up the case of Bristle Blocks she asked me for even though I knew it would get turned upside down and dumped, adding 5 minutes to nightly cleanup.

Wow, that was the easiest post I've written in a while! Probably could do that EVERY day...

Easy Breathing for Autism May Constrict Towns' Ability to Breath

Ralph James Savarese started up on Huffington Post with a post called Easy Breathing, about his autistic non-verbal son's ability to communicate his viewpoints via typing instead. His son rightfully points out the injustices society heaps on the disabled, particularly those with communication disabilities. He draws parallels between disability rights and the civil rights movement. While I wholeheartedly agree with his premise and conclusion, I'm having a little trouble with the real-world application. Visionaries see the goal clearly, but leave the difficult path for others to find.

While the civil rights movement sought to integrate and treat everyone the same regardless of race, I have trouble deciding whether we are asking for society to segregate disability and treat them special or are we asking for society to integrate the needs of the disabled into society's 'norms'. Rhetorical question, but it wasn't when I first started to write it. Strange that discrimination can so easily be ingrained into our psyche as to think there is something wrong with what is being asked rather than something wrong with society itself.

I still think there is an issue with the way education is currently administered in the US. With the townships currently having the autonomy to do how they see fit with education, yet burdened with the responsibility of carrying out the laws of the land as far as providing a 'least restrictive environment' to those disabled students, there is going to a backlash of funding fights in town halls in the near future. It just seems to me that all these special services, aids, equipment will have to come out of the township pockets. Will it come to a head when the increases needed to pay for these services are rejected as they are voted down? Or will there be a move to keep those 'undesirable' burdens out of towns so that the extracurricular activities can flourish? Local societies are going to have a tough time in this brave new world, the same way they did when they had to adjust to having neighbors with different skin colors, languages and religions. The only difference here is that they will feel it in their pocketbooks...don't expect to mess with someones finances without some kind of fight.

We need state and federal governments to step in to help townships deal with the larger burdens of equipment (communication devices can get into 5 figures), aids and special services. Right now it's either up to overburdened townships or flat broke parents to provide such services. As a recent court battle exemplifies, townships are getting desperate and stupid in their quest to deal with the high cost of special education.

So, I don't fault Ralph James Savarese and his son for having a vision of where we should be with disabled rights. As parents of autistic children we have all had to blaze a trail as far as services, treatments and rights. It's good to have a goal nevertheless. See you at the lunch counter where we can stim,type and scream for service...

Braggin'

OK OK, I've been negligent in my posting duties of late. Today, i'm going to take a slightly different tack and just flat out tell you about how Liv and Grace are doing and what we've been working on and with.

Liv- As I posted on AutismWeb a few days ago we had an exciting report from the private speech therapist the other day. During a setup of plastic food Livie whispered "I want food". The therapist wasn't sure she heard it right, but later on in the session she whispered "I want book" and "Where book". Liv's been in summer school aince July, and one of the things they're working on in PECS is adding a second icon to her requesting. "I want" and "cookie" pictures to request a cookie rather than just the "cookie" picture. The school will vocalize it as well when they do it, this just proves that Liv is generalizing what she learns.

Now comes the hard part; getting it to stick. The problem always seems to be consistancy across all areas in her life. This time, we at home have not yet implimented the "I want" and "where" icons. I'm off this week so we should be able to get this stuff in place. We need to especially, since this is the end of smmer school and the week she is off before she starts her CPU (Children's Progress Unlimited in Hazlet, great program) filler between summer school and fall.

On to Grace...Gracie continues to charm, astound, amaze and exasperate us. Echolalia is probably her main issue. It's always strange having one you're looking to get ANY word out of and another that you get upset when she rattles off a dozen words (exact dialog from a Dora episode). She also has some trouble transitioning, but we're relying on our CPU connection once again for that as well. Other than that, my littlest girl is moving in the right direction, and we are looking for great things over the coming months.

My girls have made some gains over the summer, which is much more than we can ask for. Had we relied on the township, there would have been several gaps in their summer programs, and I'm not sure without the fillers and the private therapies, if we would have have regressions rather than PROgressions.

Life Swapping

Didja ever meet one of those parents that just have to have their children do EVERYTHING? Be involved in ALL activities? Push them to get the GREAT grades? Try for the BEST schools? Don'tja just LOVE to hate them (Nah, just kidding!)? I remember a scene in the movies Baby Boom where Diane Keaton, the driven career woman from the 80's sitting in the park with her newly 'acquired' child, when she overhears some women. "He didn't get into Preschool Academy! If he doesn't get in the right preschool, he won't get into the right kindergarten, so he won't get into the right primary school, then no good prep schools, which will RUIN any chances to get into an Ivy League school."


Not that I've ever been that way with my kids, before or after autism. But I would love to trade places with them for one day. For me, it would be a somewhat relaxing day where all I need worry about are the standard horrors of everyday life. Car payments, getting kids to and from activities, sitting down for a quiet conversation and cuddle at the end of the day with my kids. For the other end of the 'parent swap' it would be a different story.


To wake up...let's say it's a good day, at 5:30. Not bad, pretty normal. Now you have to get your almost 5 year old ready for summer preschool. A little extra work from a 'normal' 5 year old since you have to do most of the dressing brushing and feeding for her, but still, not bad. Once you get one off, it's on to the 3 year old, same routine, same little bit of extra work, but still a cake walk.


The other three, I'll give them a free ride on, since they could be like any other 12, 10 and 7 year olds. Except that when it comes time for soccer, dance, baseball, or any other activity they'd like to do or you'd like them to do; because once the other two get out of school, it's time for therapy sessions. Going from occupational to speech to play therapy take most of the afternoon, not leaving much time for recreational activities. Oh I suppose you could network with other parents to shuffle them around, but you see, you don't run with the 'normal' crowd. Your crowd is more the ABA-don't-go-to-the-market-since-the-tantrum type crowd. They don't exactly have the time either for 'extracurricular' activities. Not that there's an money left for activities after spending a good portion of you salary on therapies. Home at last late in the afternoon, you feed up, wash up, clean up and get them off to bed.


I guess it don't sound THAT bad, except when you think about what your goals are. My restful day with my 'new' kids consists of worrying about pee wee soccer, planning outings, and the all important social groups for my children. My counterpart must worry about pee wee OT, feeding, clothing, and the all important working on the ability for them to communicate.

I suppose I am taking the pessimist's viewpoint of all this; that I should be counting my blessings and cherishing what I have; and I do. But sometimes I'd like to be able to share good news about my kids with the outside world that they do not look at with puzzlement and pity. I'd like to have a day out, heck, how 'bout a weekend with the family without worrying about how we'll manage. I'd like to have a conversation about my kids that doesn't involve some type of therapeutic jargon. I'd like to have laurels to rest on, the one's we get are much too small and fleeting. Just for a day, I'd like to have a life without therapy balls and PECS books and diapers and meltdowns and night wakings. A day with gluten and casein and conversations and running free in the park and pointing out the tiniest of flowers, the biggest of clouds and the vastness of the world.

I'm just being impatient, I know. I'll get there, it won't be the same as I'd envisioned; but it will be better than I imagined...

Finally Feeling Human Again

We made it through my 'official' vacation last week, this week is a mini vacation (July 4th through the 8th). The cat situation has calmed down to no hissing, friends being made, alliances formed; a feline family of four! We feel like we are actually making traction against the tide of life. We're knocking off dirty rooms one by one; leaving wonderfully clean rooms in their wake. The mountains of laundry are being reduced to molehills, finally finishing off the winter clothes and getting them up in the attic! I've attacked and defeated most of the poison ivy in the backyard and have continued to clear land.

On the autism front, both girls are settling into a summer routine and while we don't like the 6:00 wake up call to get Liv out the door at 7:15, they are adjusting very well. The 'filler camp' last week worked like a charm for Liv and she came home tired and very happy. Other therapies continue unabated by the heat, but without everyone else in school, it is a much less hectic schedule. We may even get to sleep in the WHOLE weekend this weekend!

Activities for all the kids begin in a couple of weeks so we'll pick up steam then. We'll need another vacation when I take another week off in August. WOW, what a gloriously dull post, but I have not been this relaxed in MONTHS. I may just take out my Taylor 555 and work out 'Over the Hills and Far Away' tonight.

Don't sound like much of a vacation, but to me, it's HEAVEN!

Summertime and the livin's easy for sure...

U.L.O.'s

I've been inspired by a fellow blogger, Susan Senator. With a title called Mysterious Brown Thing, I KNEW it was right up my alley. I'll let her tale tell the tale, but it got me to thinking about all those things on my floors, walls, tubs, and refrig's that, to this day, remain thankfully unidentified. When on the floor, they are known as ULO's or Unidentified Lying Objects. Now I'm gonna TRY not to step over the boundaries of good taste, but as far as ULO's go and their counterparts UHO's and UFO's (Unidentified Hanging and Frozen Objects), it is hard, ney nearly impossible, to stay away from the grossities of life.

With 5 kids (two yet to be potty trained on the autism spectrum) now 4 cats, the myriad of small and large toys supplied by Toys r Us, Amazon and those plastic advertisements/toy box fillers the fast food restaurants supply, it's easy to get confused as to what that thing IS on the floor. Most often, these things are found through sense of touch, make that sense of PAIN when you hit that point of the Mr Potato Head eyes square in the balls of your feet in the middle of the night! Other times that 'thing' becomes part of contents of that bowl or drawer in the kitchen reserved for those 'kinda LOOKS important' things. I'll NEED that someday thing... yea RIGHT! Say goodbye, you don't know what it is now and you won't know where you put it if you ever figure out it was part of the bottom of your TV tray.

Anyway, there are a class of these ULO's that you DON'T want to find through ANY kind of sense of touch, smell, taste (GOD no!)...even sight and sound aren't really preferable. Aside from the obvious thing that cats do (I'm sorry, but ANYTHING that a cat is part of I want no part of), there are those toys that are fun at first but fast become lint,crumb,hair and anything else magnet. You'll know why I disparage them if you've ever had them in the house for any length of time: Koosh Balls, Gloop, and those sticky 'things' that stick and or climb down the walls and hang off the ceiling. I had one of those UHO's on my family room ceiling for a month before I recognized it. If you wonder why I didn't see it on the ceiling for a month, you haven't seen the FLOOR of the family room (come to think of it I haven't seen the floor of the family room for a while). Kids say "Yea, we threw it onto the ceiling and it got stuck"...yea AND...maybe....TELL ME so I don't get a stain on my CEILING! These USO's Unidentified Sticky Objects usually wind up behind or underneath something and wind up being one of those curiosities that take 5 minutes of abject fear and 10 minutes of careful scrutiny before they are identified. "Oh yea, that's the mutant sticky fish we gave to Jason last summer." And the kids want it BACK...after WE wash it off...

It is critical that WE as parents find these things, because I always dread my orally fixated children to find them first. I know BAD TASTE ALERT, BAD TASTE ALERT! But it needs to be mentioned. I dread it when I find one of them chewing on a chip, when I'm not sure IF Linda gave them chips recently! Anything else is simply unmentionable...UCO's Unidentified Chewing Objects are just too horrid to go into ANY detail!

I'll conclude with the UFO's...those frozen thingies. Most of the time it's not a matter of WHAT it is as it is a matter of WHEN it was. When WILL those supermarkets start putting the YEAR on those 'sell by' dates?! The other thing are those ice pops in the plain white wrappers that you have no idea what it is and become the desperation snack of choice until unwrapped. At that point you realize how glaciers form, given enough time...

Cat Coincidence

Alright, the cat saga is officially a cat SAGA, so it deserves the full treatment of a post. When last we left our furry heroes, we had two new cats in the garage and one on antibiotics, the victim of an apparent bladder infection. After 8 days on the meds, we were still noticing blood in the urine, Linda was going to let the 10 day meds run out before going back, my mother-in-law convinced her to call. She's back at the vet last Tuesday for an x-ray. I get the phone call I dread with two pieces of bad news. First, it's bladder stones and they need to operate. Prognosis for cat- good; prognosis for wallet- 4 figures lighter. Next, the reason I usually go the vet rather than her.
"Bill...there's this little black kitten"...
"no", I say.
"He's adorable and me and the boys are in love" she says.
"No", I try to sound forceful.
"Please",
"NO", I pull out the voice I reserve for the kids for the 'Can we go to Great Adventure' whine. "OH, Please!" she pleads; she's not giving up easily, and I'm losing ground
"No" I say with that smirk you can see over the phone 50 miles away. She has me now.
"Lemme just hold him? If he's not a good cat, I won't get him." I know this cat would have to drop a limb off before she'd consider not getting him at this point.
"He's got to be PERFECT. Playful AND lovable." I concede. Game, set, match....Linda.

So, now we have 4 cats in 3 'wards'. One in protective custody until that Friday when the operation will occur. Two in detention in the garage so we protect the sick one's olfactory turf until he's back on his feet; and a kitten with the run of the house. Friday surgery goes without a hitch and we have a bandaged cat back in the boys' room Saturday morning.

There's something about a kitten that you can't help but be drawn to. Even the girls have taken to watching him. Grace even went so far as to tell him to 'scoot' when he became annoying with some of her food. There have been several stimming episodes with cat toys that have been nothing short of physical comic masterpieces with him wiggling his butt and attacking an unsuspecting stimmer. We swear Liv was playing with him while 'spinning' with a cat string.

The rest of us just gravitate toward him while he's in the room. As the one who approved the transaction blindly, I pulled rank and requested final word on the name. I was NOT going to be party to another Smokey, Blackey or Midnight in this world. Although MY rejects were not exactly the best: Sirius Black from Harry potter fame; Grim from the Grim Adventures of Billy and Mandy (somewhat warped cartoon, you have to be a preteen or a psylightly psychotic parent to laugh); Or of course, Ozzy Osbourne. Dizzy Gillespie was my front runner (get it, black 'cat', jazz...well I thought it quite obtuse in retrospect!). It was the flippant comment flipping through the 'black list' that got me the name. "How about Licorice?" After one minor tantrum from the oldest, it was written in stone. Licky for short...

So, it's been an interesting couple of weeks in the feline arena; an interesting 'degrees of separation'. My F9 key missing because of new cat (claw stuck while walking across and POP, out it came); new cat here because of sick cat; cat found to be sick because of new cats in the house; new cats in house due to mother-in-law moving out of her house. MIL moving out because of autistic kids.

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:

----------

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...