Tuesday, December 29, 2009

The Christmas Rainbow

(I just updated the date on this to give people notice that I finally got the video up. So if you've read this already, just scroll to the bottom for the video, if not, just read on for the full effect)

It's finally over, and we are all still alive and happy, the world did not end, governments were not overthrown, buildings are still standing, and best of all, we're happy! No, it's not the wrapping, that's still going on. Perhaps I should turn back the clock a few months and explain...


It started sometime in September, the school year was just getting into gear and the school my two youngest girls go to announced the play they would be putting on this year for Christmas. The show would be The Wizard of Oz. They would cast Livie as a Lullaby League dancer, all would be the non-verbal girls and they would have them sign the words while dancing. Then, the surprise of the century...they asked if Gracie, my 5 year old youngest child, would like to play the role of Dorothy!

DOROTHY? GRACIE? Sure she was doing very well so far this year. Her social and behavioral issues were getting better by the day, and her echolalia (ability to copy and mimic what she hears) was almost legendary; but my little girl, taking the lead in this play? I could hardly contain my pride and joy, I let the idea swell and propagate fantasies of movie deals and singing contracts, or at least You Tube viral video success!

We went to a back to school night a few weeks later, and another ominous thought pattern germinated. We were in the auditorium of the school with a group talking to the music teacher and she was explaining about the play. I started getting teary eyed when she talked about Gracie and Dorothy and 'the song'. Then, I realized...she didn't mention anyone else, no understudy. The fate the school's play was riding squarely and EXCLUSIVELY on Gracie's and our family's back. Did they realize what they were getting themselves into? We're not exactly one of those clutch players out there. It would be like having Peanut's Charlie Brown as your baseball team's closer, bringing him in in the bottom of the ninth with a one run lead, no outs and bases loaded. Or having Lucy Van Pelt as the football holder for that game winning field goal. Stuff...just...happens to us; life goes on, but we'll often leave the tattered remains of special events crumbling behind us!

We tried to shake off these ideas like a bad stiff drink. Damn the torpedoes, full steam ahead. We went headlong into 'wizard mode'. We got the movie, the CD, the Dorothy doll, the costume, the shoes. She began to learn every nuance of every line of the movie. My wife called me one day and put her on the phone to have Gracie come on and say in perfect clarity:
It really was no miracle. What happened was just this.The wind began to switch - the house to pitch and suddenly the hinges started to unhitch.Just then the Witch - to satisfy an itch went flying on her broomstick, thumbing for a hitch
We even got to the point where we worried that she would wind up reciting everyone else's line too, and maybe even get upset if parts of the movie were left out.

Through it all, she would sing clips of the song "Somewhere Over the Rainbow" to us, but she'd never quite give us an a capella rendition all the way through. It really didn't concern us though, because she had every bit of it down pat, we knew with the right prompt, she would just move right through it with no problems. Everyone in her life knew she had it too, she'd sing it on the bus for the bus driver, in bed, she was also singing it at school for the music teacher and everyone else who could stand it.

As the weeks drew us closer to the date, we became more and more paranoid. I'm not much for superstition, but outside of the circle of people that knew she was going to be Dorothy, I was keeping silent. I just thought that if I made a big deal of it, that the you-know-what faerie would come along and put the whammy on the whole thing. As the weeks turned to days, the paranoia became more concrete. We were hoping and praying that no illnesses would go through the house, as is pretty much the tradition between Thanksgiving and New Year. So when my mother-in-law went to tend to her sick son a week before, who wound up having the flu, we forbid her from setting foot back in the house until the day of the play.

We finally got to the day of the play and my fear of this imagined bad luck was at a fever pitch. I was convinced of a broken leg on the ice; or a broken down car on the way; or a torn Dorothy dress or some other unforseen event-shattering event. Nothing came. The only truly possible fear left was her ability to hold it together for the two shows that were scheduled for 9:30 and 12 noon. We knew full well that if she got it in her head to not do it, or something set her off, we could have a major meltdown of both her and the play.

We had the entire family in the audience; we pulled the three kids from school and my mother in law and brother in law, we all took up 2/3rds of the front row. We wanted nothing but smiling familiar faces greeting her for every scene. The show started with a scene with Auntie Em, Uncle Henry, and Dorothy all walking in to the auditorium and up to the stage. It helps at this point to understand the structure of the plays at our autism school. Most every child in the play is shadowed by a para, a teacher or a therapist. They will help guide them with stage direction and feed them the lines they need to say. So when I say the three of them walked on stage, it's really the six of them, the kids with their 'shadows' carrying the scripts, sometimes a bag of treats and always a boatload of patience and determination to help the child shine.

Anyway, there she was in all her blue gingham dress and pigtail glory. The first scene was a blur and then she was sat on the edge of the stage for her big number. I could see it in her eyes, the audience was a little intimidating. During dress rehearsals, there were very few people in the audience since 90% of the school personnel are up on stage with the kids helping. She fumbled through the first few lines, froze a little, got through another line and kind or hummed along with the music teacher singing along through until the end. I was in her line of sight right behind the music teacher and I was mouthing every word, trying to will her to get on track, but she never did. I was not devastated, but I'm not going to say I wasn't disappointed. I was really really hoping for this, knock 'em dead, not a dry eye in the house kind of home run moment and it was more like a curve ball first strike. Her family was all here, all the cameras were rolling and it was not what I was hoping for.

The play went on and she was having issues with her clip on microphone, it was either too close or too far, she actually scared a baby out of the audience with her loud voice. We were now in Munchkinland and we got our first look at Livie and her Lullaby League troupe. They were the cutest 4 girls on pink tights and tu-tus. Livie did her signing and turns in sync with the others and I was back on top. It's not that she was perfect, but she did wonderfully in my eyes. I slowly began to change my perspective. I had been through two or three of these shows over the past few years and I've realized that it's never about the perfection of the show, but about individual triumphs and especially the moments. I had forgotten this in all the preparation and panic. She was in every scene, she had so many lines, she was performing in front of dozens of people and working with dozens of others, she's 5! Of course she's gonna flub; it's not about perfection, it's about her making tremendous progress over the past few months.

I took a different tack from that point on; enjoying the moments every kid had. Cringing a little if things didn't go well, cringing a little more if it was Gracie or Livie, but relishing every good move or line each kid had. Grace kept having to move off the stage with the rest of the kids, then back on for every scene, and every time she came back in, she would cry in protest, yelling 'mommy, mommy' causing my wife to spasmodically sit up and sit down. But the minute Grace hit that stage, she had that game face back on and she made it through, even though we could tell she was tired of it and really wanted it over. The last lines of the repeated 'There's no place like home, there's no place like home' had definite poignancy for her, but she got through it.

They brought back out all the kids for a curtain call after the end, and even though it was an excruciatingly long time to keep clapping, it was the least I could do for all these kids and their shadows who had worked so hard. I clapped through the munchkins; the monkeys; the Lollipop Guild; a big uptick of enthusiasm for the Lullaby League; the witch and the wizard; then the scarecrow, tin man and lion; then Auntie Em and Uncle Henry. Then my little girl came walking out on her own and got one great round of applause. But it was not just me clapping thunderously, but the rest of the crowd as well. They too saw the hard work she had gone through and were sharing my happiness and pride for her. I finally got good use of that tissue I was holding through the show.

Everyone was very congratulatory as they left the auditorium and the three kids, my mother in law and brother in law went back to the house as well. They school packed up the video equipment and then it hit us: she had ANOTHER show in less than an hour! Gracie appeared to have coasted to the end of the show on fumes of patience, how was she going to make it through the 12:00 show? They had implemented this two show thing a year or two ago, because there was just not enough room for all the parents. The price was that you had a few dozen kids who may be at the end of their usable reserves, and the odds of major meltdowns were easily doubled for all.

Okay, I know the afterglow was a little too short-lived, but we had a real fear of a situation, where she would absolutely refuse to go on. We knew our child's will and if she did not want to, it was not going to happen. The second-show curse was, if not real, at least being prepared for. The school was not taping, the teacher told us she was going to walk her around mano a mano to try and decompress her, we were preparing for the worst. We sat ourselves in the front row, the two of us, 20 minutes before the show started and stared straight ahead as the crowd slowly made their way in. It was a digital clock with red numbers high on the wall, but it felt like a clocktower over the dusty wild west town; a silent gong of 12 bells as the dustdevils swirled in my head. The keyboardist was in place, the music teacher; the strains of the opening notes played and the three (six) opening scene characters came on to the stage. Gracie threw out a high pitched sing songy "Good Morning!' to the audience as she climbed the stairs that broke the ice a little, but my tension level was still maxed out.

They started the dialog for the first scene and I was biting my nails, thinking she was still not on her game, but it was not going too badly. The last line was said and Auntie Em and Uncle Henry walked off the stage behind her, and she was fed the last lines of "beyond the moon, beyond the stars" just as the music was starting and sat down... and NAILED IT! I could not hold the camera still as I exhaled and welled up. I could see her teacher do basically the same thing as Gracie continued through the song, not flawlessly, but on the Oh-my-gawd-she's-doing-it-'Ometer, she busted the gauge! My Pride-o'meter and Releif-o'meter went off the charts as well. No matter what happened from this point on did not matter. She had given me that moment I was looking for; that memory that would last a lifetime. It was no where near an America's Got Talent drop Simon's jaw to the table performance, but it sounded like that to me. The applause was not as thunderous as it would have been had the audience known the whole context, but it was still a rousing applause.

The play went on, and we were on the mark about her being tired of it all. She was having trouble keeping her eyes open during the show; which probably saved us. She was too tired for the fight and just wanted to get through it all and was very compliant. She only lost it once during the show and it was only because Livie did as well. Despite all the noise of the dozens of kids up on stage, the one cry that curves Gracie's spine is Livie's. Livie stopped crying briefly so that she could do her Lullaby League dance, after all, the show must go on. After that, Grace's teacher tried and cover her ears, but ultimately, they had to take Livie out for a break so the show could go on.
It finally was over, the last 'Oh Auntie Em, there's no place like home!' was uttered and we were in the clear. I was so proud of them both. Livie was the best bow-er in the quartet; Gracie even added one more AWWW moment when she curtsied instead of a bowed. I received my best Christmas present in a long long time a few days early; it wasn't what I asked for, but it was better than I could have hoped. Life never ceases to humble, amaze, frustrate, delight and challenge me. I may wish to have it some other ways sometimes, but I wouldn't want it any other way than it ultimately turns out. Merry Christmas
Forgive my amateur-ity...this is my first attempt at uploading a video. Sound quality is poor, and it might cause your machine to lock up, but I wanted to put it out there just the same, you know us proud papas:

video

Wednesday, November 25, 2009

Pig Science

Since scientific theories surrounding autism can fly as fast an often as planes over my house landing in JFK, Laguardia or Newark, I figured I can post some of my own personal theories to help explain occurances in my daily life:

The chaos theory of multiple children:

The theory that in controlling kids, one child can go it a couple of different directions; two children, a couple dozen; three can go in a couple hundred; and four or more will drive a couple crazy...



A single sock will spawn others...none will match the original descendant...

The difficulty in finding the remote is directly related to the desiralbility of the show...


The amount of time needed to complete a task is inversely proportional to the number of interruptions experienced...


The time to teach a child a task in exponentially larger than the time it takes to do it yourself...

The time available to teach the new task is inversely proprotional to the amount of patience of the parent...the figure of patience inverse to the attention span of the child...


I have literally dozens more, but putting them into a cohesive theory expends energy better used to fight the theory of self regenerating dishes in the sink and the theory of self regenerating dirty laundry...

Saturday, November 21, 2009

How About Calling Everyone a Train Wreck?




Andrea Peyser of the New York Post, one of my favorite ::dripping sarcasm:: papers because it makes Fox News look like CNN (the Cuban News Network that is), posted this blurb about protests at the Autism Speaks benefit concert on Nov 17 in NYC:

Bruce Springsteen sang. Jerry Seinfeld joked. But former NBC/Universal CEO Bob Wright had harsh words for protesters who tried to muck up the A-list benefit concert he put on at Carnegie Hall on behalf of autistic kids.
"The protesters are lucky," said Wright. "They're well off enough, healthy enough, to do it. I wish my grandson were able to join them."
Wright runs Autism Speaks, which has raised over $200 million for research into a disorder that afflicts mainly children.
That didn't stop a clutch of sign-carrying adult protesters from descending on Carnegie Hall Tuesday night, trying to disrupt a concert attended by Donald Trump, Howard Stern and Martha Stewart. Protesters complain that there's not one autistic person on the board of the org, which produced an "offensive" ad suggesting that autism was a fate worse than death.
Wright, whose grandson cannot talk because of autism, said the disorder is exploding among young kids who can't speak for themselves.
"This is serious business," he said.
Give this worthy group a chance.


The little piece of journalistic relevancy our conservative journalist (isn't that a contradiction in terms?) left out is that these were AUTISTIC adults. Kinda puts juuusst a slight different spin on the story dunnit?

But over to Mr Wright, who I'm sure understands who these people were, maybe he should think about some relevent facts that his organization leaves out of many of the pushes for donations to Autism Speaks:
  • A large percentage of those on the spectrum DO speak.

  • Those '1 in 100' numbers Autism Speaks uses INCLUDE all these children on the same area of the spectrum

  • There are many affected by the spectrum who would prefer to thought of people to be worked with rather than problems to be worked on.

  • These people protesting share many of the same issues as the kids Bob is 'fighting' for. They can provide more valuable insight to these kids' issues than most others.

To tie it all back, I also noticed within the same article, there was also a picture of Sarah Palin and her child, who has Down Syndrome. I started thinking what would happen if organizations like Easter Seals, began running ads about children with disabilities portraying ALL kids with disabilities as 'train wrecks' and life-wreckers and needing more funding to find a 'cure' for all these life destroying disasters (and much less to support their existance)? I wonder how many of these 'subgroups' would react positively? Bob, there are quite a few different colors on the spectrum...and it definitely AIN'T black and white...

I have to agree with Andrea on one thing, we should give this worthy group a chance. But I'm speaking of the group on the sidewalk, not the auditorium....

Saturday, November 14, 2009

A Push To Bring Change 2 Mind

I was watching flicking through channels last night and I stopped on a commercial that was halfway through, but struck such a resonant chord I had to stop and look to the internet to see it again. The organization is called Bring Change 2 Mind and it is pushing to removed the stigma of mental illnesses like Bipolar, Post Traumatic Stress Disorder, Schizophrenia and Depression.

View the largest of the pictures to see the PSA (Directed by none other than Ron Howard and also poignantly featuring Glenn Close and sister). I saw so many parallel to what many of us are trying to push about the stigmatic language often conveyed about the autism spectrum. When I read these T-shirts on the people in this spot, I realized in retrospect that I have a visceral reaction at the mention of many of these disorders, almost an abject FEAR of people of people with these disorders. With my comparatively new view of neurological disorders, I have slowly come to realize that my perspective has been tainted throughout the years by sensationalism, ignorance and the general atmosphere that mental issues are NEVER spoken of in society, unless you are in some inner circle.

Hopefully, organizations like Bring Change 2 Mind will drag the mental health issues into a bright light, where we can examine them with an objective eye...

Monday, October 12, 2009

Playing "Beat the Friggin Clock"

I'm sure I'm dating myself, and I'm sure I'm being a little too esoteric with this, early 70's, young lad addicted to daytime TV reference, but does anyone remember "Beat the Clock"? The show that had people trying to complete stunts within 60 seconds, that at first, seemed somewhat difficult but doable in the time frame, until the announcer pulled out the crazy twist, like doing the stunt in scuba flippers? Even if you never saw the show, you get the idea; but I think that God was a fan, fancy's Himself a game show host, and it seems I am the latest contestant.


Or maybe He thinks he's producing a reality show, or thinks He screwed up enough and wants to take over Punkd with 'regular' people. I just feel like I have been in several TV shows this weekend, and I ain't gettin no consolation prize either!


It started on Saturday morning. We were invited to the Autism NJ Conference to help man the booth of Livie and Grace's school. We thought it would be a good idea; we'd talk to a bunch of parents, hopefully help a couple find the school that we love so much, and maybe make some connections, learn a few things. Things didn't turn out as expected: Most of the people we talked to were fellow 'exhibitors'; not too many parents around. The speculation was that it was a combination of a lower turnout due to the economy and the larger representation of the more 'regional' autistic schools like ours attending.

The school representative decided to call it a day around noontime; and so began God's version of Punk'd. The school rep had a lot of stuff to get back to his car and pulled it to the loading dock to try and sneak his stuff out the backdoor rather than making the long journey around through the hotel lobby. He had two large display cartons, about 3 feet wide, four feet high with rollers on the bottom to roll them behind you. I followed behind him as he went through the curtain partitions dividing the exhibitor area from the large area behind it where the 'behind the scenes' area for the convention center was. The rep went through without a hitch; I followed him without a second thought. Two things combined: MY carton got caught on the curtain and I realized that these dividers were not really tied down at all. As I slowly turned to try and untangle (you know how God just LOVES to put the slow mo on in these situations), I watched as the two poles holding up the curtains begin to teeter and topple. But the gravity of the situation didn't stop there. As I brought my head up from the detail of the two poles falling, I realized that ALL poles had the same potential. Imagine, if you will, each pair holding 12 feet of black curtain; three more to the left and some 10-12 to the right; then, a right angle and 12 more poles. My only hope was that God was taping this and he would share; I didn't notice the three to the left fall. I was watching the domino effect to the right as two fell, then four, then five. It got to seven and thank God He didn't take the joke all the way; it stopped as the last pole hit a table and the nightmare stopped.

I got a few cheers from the exhibitor peanut gallery; glares from the staff as I choked out 'sorry' and moved a little quicker to cover the 30 yards to the loading dock. When we got back to the booth 10 minutes later, my wife took one look and said "That WASN'T you was it??" I hung my head as I nodded.

The 3 hour drive round trip; the 12 bucks parking, all that to talk to a handful of parents for 15 minutes and learn new things about NJ's new Autism Registry program, and a whole heaping helping of embarrassment. Not exactly what I had envisioned for the Saturday. Once God posts the YouTube, I'll let you know.

But the shows on Almighty's Comedy Central just kept on coming. Up next: Beat the Clock. I'm your announcer, Saint Peter and now the host of

Beat the Clock, Wing Yahweh. Hi folks we have great show today, let's bring out our first contestants: Bill and Linda. Bill's an overworked virtual janitor; Linda coordinates life for 5 kids and therapies for two of them who are on the autism spectrum. Pete, tell them what their challenge is....Yea, Yah...their challenge for Monday is: Get pictures taken at JC Penney of the ENTIRE family, brought to you by JC Penney...YOUR portrait studios, back to you Yahweh.

OK, Bill and Linda, sounds like a tough one, but you guys seem pretty adept at handling these situations. I'm afraid we're going to have to make it a liiiitle more difficult. Bill, you wanted to take the whole day off, wellll, we talked with your employer and you'll have to go to work afterwards because too many people are going to be out on Monday. OK folks, we'll start the clock on Sunday afternoon, you have to get outfits picked out and have these kids primped and ready for the appointment on Monday at 10am.

While they get started folks, we have a liiittttle surprise for them that St Pete's going to tell US about but not THEM. That's right A.Y., our little surprise is that we've broken their hot water heater, that's brought to you by GE, the FIRST name in water heaters when you're on your LAST nerve. Thanks Pete, let's get to the action: the boys have just informed dad of the flood in the garage; he's assessing the damage, he's discovered the leak. He's telling Linda now aaaannnd...let's go to a commercial break while they gather their sanity, THIS commercial break brought to you by XANAX.

We're back and the action is fast and furious. Bill's looking for a bucket and mop; Linda's calling the HVAC guy who's coming to clean the furnace tomorrow. What's this? Bill's using a LITTER box to drain the water heater! And in a stroke of absolute brilliance, he has found an old case of hospital pads they had used when Livie was in her toilet training phase. I guess that little sponge mop was not going to work very well. Linda's got the number of a good plumber who's watching football right now but will get back to us. Bill's on the third package of pads. It looks like they've got the emergency at hand...or do they?

Eight people, two showers, scratch that...ONE shower, the other doesn't work with the hot water off. Let's see what they do. I don't believe this, he's boiling WATER, he's going to use it to give the girls a bath. They get through the baths, and the oldest even uses the water for her bath too. Amazing, I think they're going to get through this, one more obstacle...THE MORNING. As they go to sleep let's take another commercial break...brought to you by Captain Morgan Spiced Rum.

We're back, it's 7 am Monday and it's time for the SHOWERS. Listen to Bill squeal and that cold water hits his body, now the boys, now Linda. They've got everyone out,the clothes are on, some minor sock fashion emergencies; the color coordination is NOT going well with the grandmother, but she FINDS and acceptable brown dress to match the rest of the family. How's their time look, Peter? Well Yahweh, they're getting out the door 15 minutes late, it's not looking good. They've called the studio and there is another appointment coming in at 10:40...it doesn't look good.

Thanks, Pete, lets get into the action, they're taking 3 cars so that Bill can take off right after this...and they make it to the studio at exactly 17 minutes after 10. This is not looking good, the studio is trying to offer them a fill in around 11 or 12 if someone doesn't show up. It's getting a little heated in there, Linda's saying they still have 20 minutes left on their appointment and what's this? She's pulling the autism card, yes she didn't think she would have to use it until the woman was trying to take pictures but she's asking for mercy and pleading that she'll only have pictures of the kids taken and...they...ACCEPT, we're going to have to get a ruling on this Saint Peter, it's not what they were supposed to get done, what do the judges say? Well Yahweh, I'm going to have to defer back to you... you're the boss. Oh yea, right...OK we'll let it ride and see where it goes. These guys are pros and they're getting through the sitting with not a tear; group shot and the three girls even get individual shots done.

Bill's taking the 5 kids into the mall while Grandma and Mom pick out pictures and...it goes off withOUT a hitch! A carousel ride, an early lunch, Mom calls back and THEY ARE DONE! Time, Pete? The time is 11:55.... they've DONE it folks! Tell 'em what they've won Peter.

Bill, you've won an hour and 15 minute commute to a crazy afternoon at work. Linda, you have repair men traipsing through your house for the rest of the day. But BEST of all...more than a DOZEN pictures of your precious kids who actually looked good in the photos. Thanks for playing Beat the Clock, we'll have them back next week for fall cleanup and winter clothes changeover. I'm your announcer, Saint Peter, for God and me...have a great day and a great time playing your home version of Beat the Clock.

Sunday, October 04, 2009

Oakies


I crossed paths with a Texan today, who was looking to relocate to the NY/NJ area to find better schools for her autistic teenage son. It disturbed me that I had no good answers for her; and it was somewhat heartbreaking to hear of the tribulations she needed to go through to even get a district to give information, let alone, let her view their school.

It struck me driving home, how much we have in common with the Okies during the Great Depression of the 1930's. For those of you unfamiliar, people from Oklahoma during the period, we fleeing a decade-long drought in search of a new home and work. They were met in California with contempt...and sometimes violence.

We escaped from our OK in 2005, that was less than a 100 mile migration. Many many parent I've heard move in the same way; many much much farther, with little more than innuendo of a 'better place' where the educational streets are paved with gold. I'm not sure how to solve it; one of my clones would surely set up a website where parents could rate and ask about school districts and their abilities and willingness to work with special needs children. But there will always be those 'true Californians' who will try and stop all these 'special needs Okies'. We need a better way.

Meanwhile, as a true Okie myself, all I can do is help any overstuffed minivan passing my way with an 'autism awareness' bumper sticker to get to a better place...

Wednesday, September 23, 2009

Autism Sells

I originally thought that I could write a thoughtful, serious parody of the new Autism Speaks PSA, giving it a more reality and less of an "Invasion of the Body Snatchers" feel. But after I realized my biggest beef with it was it's blatant use of fear to 'sell' it's product; I just turned it in upon itself. If you compare the original transcription (Thanks Cody, for making my life easy), you can see how eloquently simple the needed changes were and how eerily fitting it becomes:

man: I am Autism Speaks. I'm invisible to your autistic children, but if I can help it, I am visible to all you with a checkbook. I know where your guilty conscience lives, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, but I KNOW currency. I speak that language fluently, and with every voice I take away, I acquire yet another dollar. I work very quickly. I work faster than those funding pediatric AIDS, cancer, and diabetes research combined. And if you are happily married, I will make sure that you fear your marriage will fail. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don't have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don't exist, of course, until it's their charitable donation. I am Autism Speaks. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?' And the truth is, I am still winning, and you are scared, and you should be. I am Autism Speaks. You ignored me. That was a mistake.

woman: And to Autism Speaks, I say...
man: I am a father...
woman: A mother...
woman: A grandparent...
man: A brother...woman: A sister...
man: We will spend every waking hour trying to weaken you.
woman: We don't need sleep, because we will not rest until you do.
woman: Family can be much stronger than Autism Speaks ever anticipated, and we will not be intimidated by you...
woman: ...nor will the love and strength of my community.
man: I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
woman: Autism Speaks? You forget who we are. You forget who you are dealing with. You forget the spirit of mothers...
all: ...and daughters, and fathers, and sons, AND AUTISTICS...(crosstalk: several people calling out "We are" and the names of different countries)
all: We are the United Nations.
man: We are coming together in all climates.
woman: We call on all faiths.
woman: We search with technology...
woman: ...and reality...
woman: ...prayer and...
man: ...logic...
man: ...genetic studies...
woman: ...and a growing awareness you never anticipated.
man: We have had challenges, but we are the best when overcoming them.
woman: We speak the only language that matters:
all: Love for our children.
woman: Our capacity to love is greater than your capacity to overwhelm.
woman: Autism Speaks is naive.
woman: You are alone.man: We are a community of warriors.
all: We have a voice.
woman: You think that because some of our children cannot speak, we SHOULD NOT hear them? That is Autism Speaks’ weakness.
woman: You think that if you say my child lives behind a wall, I am afraid to say differently.
man: You have not properly been introduced to this community...
all: ...of parents and grandparents, of siblings and friends and schoolteachers, therapists, pediatricians, scientists AND THOSE ON THE SPECTRUM.
woman: Autism Speaks, if you are not scared, you should be.
man: When you came for my money, you forgot:
all: You forgot about autistics.
woman: Autism Speaks: Are you listening?

Tuesday, September 15, 2009

Wow, I'm Slipping!

Holi Canoli! I turn around and more than a month and a half has passed since my last post. It's not like there has not been material in the past 45 days, but most of my good ideas occurred inside my head, often as I am drifting off to sleep. I guess I could do a Twitter version:

Vacation, late August...3 day trip to Cooperstown to relatives...I had entire posts in my head on generational frustrations of showing historical baseball in the hall of fame to boys who seem to care-less. My one liner to them "my only satisfaction is that you will be in this Baseball Hall of Fame 25 years from now with YOUR boys pulling your hair out because they won't listen to you about Derek Jeter!". Also, baseball players, despite the exorbitant salaries, have it kind of rough: 162 games in 183 odd days, half the time away from home and travelling to dozens of cities otherwise...I'd want at least a million a year for that too...can you imagine the minor leagues and those players' love for the game?

Back to school- wow 5 kids, three new schools, new schedule, paperwork in quintuplicate (filling out an entire pile with the wrong kid's name), school supplies, oldest child in HIGH SCHOOL (lines on my face gettin' clearer).

Ableism- wrote a long poignant piece in my head last night on society's desire to indoctrinate to reward 'the best' and not 'the best you can do'. Comparisons against others and the old, almost instinctual 'pack mentality' to rank from high to low no matter what group you are in is something that is hard to fight; even in the disability world. How do I as a parent know when I push for progress for my daughters future's sake and not for 'progress for progress' sake'? So much of the post was lost when Gracie kicked me in the head in the middle of the night...


I can't promise that I'll be back into a regular posting schedule over the coming weeks, but I will try and stay up an extra half hour on occasion, to get the ideas out of my head and into the I-ther...

Thursday, July 30, 2009

Wright On!

Linda and I took a day off today, so to speak, and journeyed to the land of Washington Irving to Mercy College in Dobbs Ferry NY. Of course, days off that don't directly or indirectly involve our kids and/or autism are very rare, today was no exception. We attended an all day conference on Wrightslaw Special Education Law and Advocacy, to all you parents of special needs kids, I would highly highly recommend it. You receive two books and an all day talk with one of the founders of the Wrightslaw website, Peter Wright Esq. (but don't hold the lawyer title bias you, he's really a nice guy). Breakfast, Lunch provided...all for $100 for BOTH of us... how can you go wrong?

If you've never been to the Wrightslaw website and you have special needs kids, time to leave the cave. The resource is truly amazing and Mr Wright was quick to point out that kudos for the incredible information provided should go to his wife Pam. Again, if you have special needs children, I urge you to go there; if you have ever had ANY problems with your local school district, I demand you go there. If you are anywhere within the areas where he is giving this one day course or the two day intensive 'Boot Camp', It's money and time well spent.

I guess in retrospect, it's not that you learn all THAT much from the seminar over what I could have done researching on the site fro 8 hours. It's more the inspiration and the fact that you are forced to think about it all day, not to mention all the great ideas that pop into your head as you listen and review the details of special ed law. We also already had both books (Special Education Law and From Emotion to Advocacy), now I have my own copies!

Wednesday, July 22, 2009

Level 5 in the Game of Life


I had another one of those epiphanniac aneurysms last week. I was putting together a 'big wheel' while giving a piggy pack ride to a child as I was mediating an argument between two others, and I realized that simple tasks are still simple, but new barriers are thrown up to make them more challenging. I sometimes feel like I'm Mario and God's got me up to level 5 and seeing if I can handle the extra Koopa Troopers. The game is still the same, it's just that there a so many fun new obstacles in the way.


Economies of scale last week that I had to put together 3 Big Wheels (two for the girls, one for their school). Fly by night internet company seemed to combine three different genres of Big Wheel styles, so the last one I put together wound up with West Coast Chopper graphics and a pink seat. Luckily, I don't think Livie minds being a biker chick. Anyway, all this assembly is occurring with kids fighting and the girls running around, looking to have fun. Livie is now wholly obsessed with getting piggy back rides from me. I created a sign for 'ride', grasping two hands together and pushing them down. She will climb behind me on the couch and put her arms out in front of my chest and do the sign; this no matter what I am doing (this morning at 4:45 am, since she was wide awake, she decided that a ride should be the first thing I should do in the morning). So in between bolting things together, I am taking breaks by riding her around the house. Gracie also likes to get rides, but Livie turns into the Green-eyed Monster and tries to stop Grace from making the attempt.


Yesterday, I was ambitious enough to tackle the 'sock basket from hell', our laundry basket which we put all our mismatched socks. It hasn't been fully attempted in about 4-6 months, and lately everyone has taken to trying to find a match ad-hoc when they were desperate. The basket was beginning to spill over and it was probably pushed down several times so this thing was packed with probably 2-3 bushels of every sock imaginable. God had fun playing the 'sock room' with me: throwing arguments, bathroom emergencies, dinner and miscellaneous challenges in my path. I did complete the task though after about 5 hours. I am quite proud of the final tally:


Total pairs matched - 209 (PAIRS not socks)

Total unmatched socks leftover- 127

Total permanently orphaned, holy or two small socks thrown out- 25

Miscellaneous winter hats gloves and doll clothes- 17


Do you suppose I can get an additional 'life' for all the 'points' I collected in that world? Of course, my theory of spontaneously generating/mating of household objects held true. After finishing the job and having just socks leftover in the basket, not 10 minutes later, I looked in the basket to find a completely bizarre winter glove on top, black with purple fuzz; those frisky little socks!

Monday, July 20, 2009

Birth of a Blogger


It's always a miraculous event when a virtual person emerges from the womb of message boards out into the 'real' world of blogging. Commenting on message boards is somewhat anonymous and you can become lost in a chorus of people and your words become part of a heap of other personalities. But when you blog, YOU are the sole dictator of what gets said and you set the tone an tempo with what you have to say. You can touch lives without even realizing it, in places you never even heard of, in ways you could not fathom doing in person, and it's all you.

To speak in generalities on blogging, I recently came to a sort of bizarre epiphany. I was thinking about what happens when a person stops posting on their blog. You really have no idea why they stopped: ran out of things to say, lost interest, died. Died is where I came to the interesting dichotomy. I have a passing interest in the macabre hobby of old cemeteries. When you visit a persons grave, you usually have all the vital statistics of a person of exactly when they were born and died, with little but clues as to who they were and how they lived their lives. Conversely, bloggers get into great details sometimes on their view and personal lives, then can disappear into anonymity. Closure is something that rarely seems to happen in the blogosphere.

But I guess the internet and blogging are not going to be a great places for epitaphs for the masses; your virtual life just gets washed over by the flood of information and eventually just gets 'buried' into an archive. A few years ago, after my aunt's passing, I began googling her name and other meaningful things in her life. She had a friend who had predeceased her and I googled his name. I had always known him as loving music, even though he was a dentist. I came across one hit that link sent me into a message board where a person was going into great detail about a coronet (trumpet) he was trying to sell and how it was his dentist's trumpet. He talked about how all the jazz musicians in the 50's in Hackensack NJ would congregate in his dentist's office and play music. He wasn't explicit, but I wonder whether my aunt's friend hung out with people like John Coltrane and Miles Davis (who recorded a record or two in Hackensack). All this is academic now, because the link no longer works, the coronet was either sold or remains in someones attic, and the story is transient and gone from all but some obscure server in some obscure college which probably was erased or archived never to be seen again.

Where was I going with all this? I'm sorry, I was introducing a new blogger to the ether. Her nom de keyboard is Age- a Jersey girl with a lot to say and hopefully won't read into my post as anything but a rant, the impacts of blogging are immediate and far reaching. While the distant future for everyone on the planet is death; what we say and do can have impacts far beyond our own lives. Good luck and make a dent in the real world with your virtual voice.

Saturday, July 11, 2009

Hey Ed...I Love You

Forgive me for hijacking my regular posts to answer someone who has gravely misunderstood me. I have endeavored in the past few days to raise awareness on legislation before the US Congress to require insurance companies to cover various therapies normally in use for autistic children. It happens to be something that is very important to me and my family; since occupational and speech therapies for my two daughters runs into the thousands of dollars every year. I have been on a couple of blogs on Autism Hub to discuss and debate the issues and points of conflict with the use of therapies, particularly ABA. Which brings me to Ed.


I posted comments on his blog to discuss the particulars of my position and it appears to have gotten out of hand and I am now banned from further discussion. Hence, the reason for my post. I just wanted to say that, if my comments offended you, I am sorry. My desire to understand and empathize with those living on the spectrum is not only genuine, it is a matter of necessity, since I am, by proxy, responsible for trying to understand the needs of two young children on the spectrum.


I'd really like to go point by point why I feel you have gotten me all wrong, but I'd rather just say, metaphorically speaking of course, I love you man. I have to love you because you represent a possible future of my daughters; albeit a radical one, but one where they will be self determined.

I will not be seeking any further dialog, unless initiated by you...I wish you well...

Monday, July 06, 2009

Compounding the Problem

As previously mentioned, we've been battling a Decepticon called Streptococcus, which invaded my daughter Livie almost two weeks ago, then finally showed it's true form in me over the weekend. On top of that, one of his little minions, Otitis Media, tried to further transform my weekend by taking residence in my youngest, Gracie. All three of us are now under the care of the anti-bot Augmenton. Unfortunately, Livie's mind is being controlled by this transformer, to the point where cannot rely on a frontal assault and we are going to have to attack from the rear. (Sorry, for those without preteen boys or not into mindless action films or complicated plastic toys HERE is a little background to the analogy).

Reality is that Livie's more than week long ordeal with the strep throat has left her very punchy as to what gets passed her gullet. She is thankfully eating and drinking now, but has taken great pains to not letting anything that does not meet her strict criteria of delicious passed her mouth. Unfortunately, this includes all the great thing she needs, like ibuprofen and most of all, antibiotics. She had been doing pretty good over Friday and Saturday taking the antibiotic twice daily; then on Sunday, she began to hold the medicine in her mouth. We used every sleeve to find tricks to get her to take it: hide it in applesauce; hide it in liquid; use an upcoming meal as a carrot to get her to take it. We tried one more time on Sunday night and finally gave up.

You really cannot get anyone to swallow something if they don't want to, so you have to find another route. I'm very surprised that more doctors don't know about the idea of compounding pharmacies. Our doctor here in Monmouth County is interested in getting information about the closest compounding pharmacies in the area. Apparently autism isn't the only area where oral medications are refused! A compounding pharmacy can put many prescriptions into a suppository form. Of course, as per usual, this comes at a cost; and of course, there is no 'insurance code' to get the cost reimbursed. Just another one of those pain in the aspirations to get insurance to recognize and cover real medical needs.

Back to work today and reflecting on a semi-hectic holiday weekend. I did get in some fun (defined as prolonged periods of staring at cooking food on the grill whilst holding a 6 or 12 stringed instrument or adult beverage). But just like the adage that it ain't a party 'till something gets broken; it never seems like a holiday unless we are scrambling to a doctor, pharmacy or drug store...

Thursday, July 02, 2009

The Human Petrie Dish

Ah, back onto medical issues...
We are feeling horrible today because Livie has most likely been living with strep throat for the past week. It started last Thursday when Livie had a fever, rash, mucous on the back of her throat and a coating on her tongue. All these are classic symptoms for strep and Linda wanted to set up an appointment with the doctor. "Bill, can you take off or even a half day today?" She said with almost desperation in her voice. I had a two day training class that, practically could have been missed, but politically would have been career suicide to miss. Linda, talked to the doctors office and found out there was going to be an intern as well as the doctor. Perfect, another set of hands. She took Jason just to stave off WWIII at our house if we left the three fates alone together.

I guess I should explain, like most of us, Livie does NOT like to get throat cultures. Unlike us, she takes a throat culture and an imminent death threat, and she needs to be restrained. Linda, Liv and Jason set up in the examination room and the intern steps in. First mistake...Livie gives her a sideways glance to say "I don't know you, you don't know me...prepare to be thwarted". Livie was tentative but cooperative toward the intern. Then her normal doctor came in and Liv did her babble she reserves for people she knows. More standard business then, the moment they've all been waiting for, the SWAB. You really need 4 people for the swab: one for the legs; one for the torso/hands; one for the head and mouth, one for the deed. The intern turned out to be too tentative for the task, she did not seem comfortable restraining a child, Liv saw right through th weakness and to0ok advantage. By the time they were finished, Jason had jumped in on the legs and Linda had the torso, arms AND mouth. It was not a good scene.

The test came back negative, and we were left with the prospect of a viral infection. Livie was not swallowing much and was frequently pooling her saliva because of her supposed throat pain. This continued through the weekend and into the next week. We were under the impression that she was working off of a fear of still having a sore throat. Then came my part in this play.

I was just not feeling well on Wednesday afternoon at work. I came home that night to discover I had a fever, body aches and a sore throat. I had come down with this virus. Thursday, I called in sick and Linda saw my sickness as an alternative to bringing Livie in to the torture table again. I went to the local emergency care and got myself swabbed. “You got kids?” the doctor asked. “Yea, lots of them.” I said. “Well, one of them has given you strep.” He says.

Oh boy…that poor girl has been fighting a strep for more than a week. We took her right away to the doctor, and I filled in the anchor of holding her torso and hands and we had a much easier time getting a sample, and of course, if came back positive. Now the biggest problem is going to be getting her to take the medicine, we may wind up having to have it compounded into a suppository. Oh JOY, that will be an adventure…

Saturday, June 27, 2009

Outfitting an Army (W update)



Our family is scheduled to go to a very special event next week, specifically one of my nephews is go to be bar mitzvah-ed, or more properly said, going to become a bar mitzvah. In either the vernacular or the proper however, it is a BIG deal. So, being a family member of the guest of honor, we have to make sure we are dressed to the nines (where'd they get that phrase anyway?) . Problem is, our family is usually dressed to the two's, we might hit the fours or fives on occasion; but nines require us to get out there and spend some real numbers in time and money.

First let me get through the logistics of the day. We opted out of having neither the girls nor the congregation nor ourselves endure the girls endure the ceremony. So we just have ourselves and the three kids (hopefully all three). My mother in law will watch them while we are there, that is, she'll watch them if her back is able. She has been having relapses of an old back issue, and with Livie being, shall we say, physically difficult of late, we are scouring the area without much luck, for someone to ride shotgun in the house while we go. Right now, it looks like we're going to have to at least do something about the party afterwards. We'll probably leave Gracie home and take Livie.


Okay, we know HOW we're going to do it, but now the inevitable question...WHAT TO WEAR? I'm the only one in the family who remotely has any level of dress up stuff, but even though I work in an office, we are 5 years into a daily dress down policy. I hardly think my 'Autism Awareness' golf shirt and khakis are gonna work in this situation. The 3 older kids, forget it. We need to go to the store if we need a white shirt for a choral concert. Livie and Grace my have a decent outfit or two. Linda's last nice outfit was the wrong season. So we have a 6 alarm fire that need to be put out.

I am first. Since life has not only seen me accumulate experience and battle scars, but also has physically accumulated on me, I can no longer count on major retailers putting on major sales to have sizes in my 'major' category. I love all those euphemisms for large: Plus size; the oldie but goody 'husky'; portly; women's sizes; big and tall, I'm sure if I actually went into stores, I could find a dozen more. My latest encounter was at Men's Wearhouse where I was declared an 'executive' size. Yup, I'm moving both up AND out in this world. What if I get any bigger? Am I then a VIP size; a presidential size...I guess they'll just stick with good ole' King size. Good experience from that place, from suit to tailor to shirt to tie....I'm set.

While Dillan's height has gone up, it's all just more beans on the pole; he has gotten use out of his last suit for three times counting this event. His 'difference' is in his shoe size. He's pretty much starting out in men's sizes, yet his feet are what they call narrow. He flopped out of the dress shoes we got off the internet, and we had to search out narrow sizes on Amazon. I honestly don't know how they did it before the internet. I guess that's one of the reasons society shunned those who were 'different', and maybe part of the reason society's getting wider, since strange sizes are now a click away. Heck, if I were a parent back in the 70's and I knew I couldn't find sizes for my kid, I would have stopped feeding them until they were back 'in range'.

Jason had proved even more a challenge. One suit we bought wound up being tight around the waist and we finally scoured all over the real and virtual earth to find something that A) fit; B) He liked and C) did not clash with Dillan's suit. By clash I'm sure you realize that means 'is NOT the same'. If you talked to them, being dressed at all similar would mean the equivalent to a personal Armageddon.


The 'other' two girls, Linda and Aly took to the malls over the weekend to finalize their ensembles. All I can say is THANK GOD I did not have to sit through that. I used to go out with Linda to the mall when she went out clothes shopping. Note the phrase 'USED TO'. No offense, but you women shop differently than men. It's true, and it's been 'scientifically' validated. Men hunt. Me lookum for 'XX '. Me kill (buy) 'XX'. Me go back to cave. Women 'gather'. They stroll the 'fields' looking for berries (bargins). Result: more berries than we can eat and WAYYYY too much time spent looking for the most ripe ones. Alright, men do miss lots of plump berries carrying their kill out, but that's the price of being king.


Okay, Saturday will tell whether we can pull it all off. We have 6 new outfits (well 5, with Dillan having a new shirt and tie). The next challenge is whether these nice outfits can survive 8 hours of our family. My bet is that at least one casualty; maybe one 'death' and one that will require major surgery. Mazel tov, Alex...
Update:
We made it to the Bar Mitvah, well most of us...
Livie was sick this week with some kind of weird virus and she seemed to have a sore throat and she's been very clingy. So Linda wound up staying home with Livie. The 3 older kids had a bang up time at the party...to the point that they were requesting when the NEXT bat mitzvah party was. When I told them that there was no prospect of a bar mitzvah in our immediate family for more than a dozen years; the idea of conversion to Judaism seemed a viable solution to them.
We were heading home and we got a call in the car from homebase, requesting supplies from the local Stop and Shop. With the four of us fully dressed, and a supply of fun stuff from the party (goofy hats, glow stick chains, sunglasses etc) I saw an opportunity for fun.
I had the boys put on their jackets and sunglasses from the party, and with my jacket on and aly in her fancy dress; we went into Stop and Shop as an entourage. Jason and Dillan had fun playing Secret Service agents; checking aisles for dangerous characters and potential explosive devices. We had the checkout clerks in stitches as they saw Joliet Jake and Elwood Blues go by. The way I figured it, when was the NEXT time we would have the chance to have fun in full regalia? Halloween?

Thursday, June 25, 2009

Middletown in Monmouth/ IMPACT OASIS Pull it Together

I know it's probably small news in the whole scheme of the autism world, but I'd just like to give a big fat kudos to the state of NJ, the township of Middletown and most of all, to those innovative and hardworking group of people in the town who go by the name of IMPACT OASIS for pulling off the purchase of a 26 acre tract of land that will benefit the community in so many positive ways. For the town, they provide much needed open space. As an added bonus, they secure a place for autistics transitioning into adulthood to gain a sense of independence by providing a place to work, live and contribute.

17 acres will still be preserved as open space, but the remaining 9 will be used as farmland to create a working farm and community with autistic young adults at its center. IMPACT OASIS has been working on this deal seemingly ever since I moved down to Monmouth County, I am proud to say that they have realized their dream.

What's almost as impressive is the deal they struck. they had $900,000 of their own money; there was $250,000 from NJ/NY Baykeeper $200,000 from Monmouth Conservation Foundation and a stunning $1.55 million from the township. A bargain for all involved! Thanks IMPACT OASIS for following your dreams and making it a reality. Read more from our local paper, this is a program that I hope could be duplicated throughout the country.

Tuesday, June 09, 2009

A Highpathetical

This is a hypothetical conversation in a hypothetical speech therapy office between a hypothetical mom of an autistic 7 year old girl and a hypothetical grandma of an autistic 5 year old girl:

Grandma: I'm just not sure why she's waking up in the middle of the night. We checked to see if she's had a fever, she doesn't have any tooth problems, upset stomach, she certainly can be having any bad dreams.

Mom: Why can't she be having bad dreams?

Grandma: She doesn't dream, our doctor says she doesn't dream.

Mom: Of course she can dream, she just can tell you what the dream was about.

Grandma: Well, that's not what the DOCTOR says.

Mom: I mean, she could have been dreaming about her mommy leaving or something.

Grandma: Oh she doesn't care whether mommy there or not, really she's only living in the present, she hardly reacts when my daughter comes home.

Mom: It's not that she doesn't miss your daughter, most often, autistic children will just not be able to express it; they often have a very difficult time with communicating emotions and the 'outside' world has trouble reading the signs when they are trying to communicate emotion. You know they do a lot of work on things related to the kids having trouble requesting things that are not visually present. I have no idea of her progress on the ABLLS or what's in her IEP, but it's something that you might want to look into.

Grandma: Oh, I don't know, it's just all so complicated...sometimes I just wish they'd just stop pushing her and give her what she wants. It's like...when she wants to go out a door, she stands in front of it and cries...and they FORCE her to sign to go out, and she can cry for 5 or 10 minutes before she does it...it's terrible!

Mom: They're just trying to get her to use language, if they continually give in and let her out when she cries, she learns that if she cries, she gets what she wants. This way, she learns to communicate the things she wants.

Grandma: Here comes my girl, I'll see you next week.

Off Grandma walks, with her Autism Speaks T Shirt, and a child who desperately needs to be understood.

Now...I am certainly glad this is a hypothetical situation and that I had no real-life basis for this conversation. While, I could half-expect this coming from someone who does not live within the rainbow of the spectrum; it disturbs me that this conversation, might an most likely does occur all across the US and the world every day. Folks... in short, I think we are not doing a good enough job conveying the needs, desires and capabilities of those on the spectrum, ESPECIALLY, those who are unfortunate enough to not be able to express themselves well, or not at all (in the conventional sense anyway). I'm not sure we are going to be able to change the minds of those outside of our comparatively little circle if we can't change the hearts and minds of those within it.

Please try and convey to all those you touch that, while autism may appear to be a shell, there is a living, breathing, THINKING, emoting and deserving human being on the other side of that diagnosis...limited only by their abilities, desires, ambitions and perseverance...and yours.

Saturday, May 30, 2009

A Connecticut Library's in Queen Livie's Court

The original title of this post was supposed to be Grand Central Station because life just seems so busy. The culmination of that week's madness was our journey on the Friday before last. It's been several weeks since then and the roller coaster effect has somewhat worn off, but the memory lingers.
To start back even further, several months ago we received word that something Livie did for her art class was chosen for some kind of international kids' art exhibit. "Great, we said, what does it look like?" we asked. "Sorry, but it went on tour to Washington D.C.. Humina humina wha? MY little girl's artwork is hanging somewhere in DC? No friggin' way! This is going to be one of those buy-the-picture-book-for-$100, right? I mean, she's non verbal and she really doesn't like to draw. We'll just let it slide and maybe we'll shell out the cash.

Fast forward another month or so and I get a call from the principal. "Bill, they're going to have an exhibit of the works in Connecticut, and we have an invite for the artist and her family, would you like to go?" Another Ralph Kramden disbelief noise came out of my mouth, but my wife and I agreed to go.

Another flash forward to a few weeks before the show. "Bill?" Linda calls from the other room
"I gotta make that call to confirm that we are going, and we can get pretty much as many tickets as we want, Aly and Jason want to go. Whatdya think?"
"Three kids in a minivan, all the way to CT, whatdya think I think?"
"I'll get tickets for them too." she says...more than 20 years married, you'd think she'd get my meaning from my tone of voice by now.

One more time tick to the week of the show. Linda is flat on her back with some virus. "If this last until tomorrow, I definitely won't be able to go." "Come on," I pleaded "the vomiting isn't that bad, you don't HAVE to sit up in the car." I really didn't want her to miss this show, it had NOTHING to do with the abject fear of being stuck in the minivan with three kids for more than 3 hours.

The day arrives, the morning leaves no doubt that I am on my own on this journey. Alright, lemonade it is, make mine a double, make the best of it. Google map clocked it at 1 hour 50 minutes, pre party starts at 5:30, presentations begin at 6:30. We'll leave at 3:30, have 10 minutes for some minor traffic, heck, worst case scenario and we hit an hour's worth of backups, we'll get there 10 minutes before the ceremony.

First hour on the road goes off without a hitch, we hit the approach to the bridge (for those who know the NY/NJ tri-state area, you are already hearing the ominous music)...traffic stops. The sign up ahead flashes (delays: 35 minutes across GWB upper level). Shoot, I forgot the sugar in the lemonade. Aah well, we're still 45 ahead of schedule for the ceremony, what more could go wrong? (Again, you tri-state area folks are closing your eyes and shaking your heads) What could go wrong...on the George Washington Bridge? To the Cross Bronx Expressway? To Route 95? On a Friday afternoon? No...speed...above...25...miles..an..hour...

Anybody who has had the pleasure of being on the Cross Bronx can appreciate this next one. My daughter is starting to complain. "Can we get off and find a bathroom?" Aly asks somewhat urgently. " "Aly, look around...this is the land of ONCE ..." pointing to the free advertising written in spray paint on the underpass. "we are NOT getting off on any exit around HERE." 20 minutes later, the urgency has turned to pleading. "PLEEEZE dad? I really have to go!" We're just getting on the 95 turnoff around the Throgs Neck (or was it the Whitestone) Bridge. "Dadddd, pull OVER, I'll pee on the side of the road, I DON'T CARE!" Next exit, I get off and do my best French Connection imitation through the residential section of Pelham Bay. We finally fin a corner with a pizza place; I park next to a fire hydrant and send her in. A minute late, she's back "PAYING CUSTOMERS ONLY..." I have just 2 bucks in my wallet and I throw them at her, Jason goes in with her. 3 minutes later, they come running out. "Dad, take off!" she says somewhat panicked. Already in my Popeye Doyle mode, I execute a wild U turn and head back toward the highway. "DaAAD! the cheapest thing in there was like 2.50! We said we would by something when we got out...we took off after I got out of the bathroom!"

Back on 95...traffic finally begins to break up a little. Maybe, just maybe, we can make it by 6:30. WELCOME TO CONNECTICUT ...ENJOY THE...backup. 8 miles away from the exit; 10 minutes to the library after that...time 6:15. No way we're going to be on time. 6:35...we hit the exit and I switch to my innate sense of direction (no, really...I DO have an innate sense of direction, I did NOT get lost).

We arrive in the parking spot at 6:47; into the library at 6:49. Aly takes Liv to the bathroom, it was a certified MIRACLE that Livie didn't have an accident. I scope the presentation ceremony. About 75 people and a crowd of kids and parents near the front where they are giving out the awards. Kids artwork everywhere, i am not finding Livie's art anywhere, not that i even know what I'm looking for. 6:52, they are out of the bathroom and I push to the front of the crowd. I had just heard the guy with the mike ask "Was there anyone else?" Luckily, another boy had stepped forward and the man was asking him questions while kindly critiquing the piece. I positioned myself in the front and Livie began getting just a slight bit antsy, she brushes some woman who is sitting near the floor and I get a slightly dirty look. Lady, if you knew what I'd just been through and you value EXISTENCE...you won't say a WORD. "Okay, is there anyone else?" the emcee calls out. We step forward and I give them her name and the school name and they pull it up on the screen. "Oh yes, I remember this one,it's the stained glass-type piece..." I blurr a little after this, I remember answering a question and tell the MC after the description that she is non-verbal and 6 and autistic.

We were the last one presented, we MADE IT! I asked them if there was a certificate or something. "You should have gotten one through the school. You can buy a copy for 40$. But this one probably won't translate as well onto the reproduction." After all this, you're damned RIGHT I'm buying a copy!

The theme of the exhibit was "A view from my window" or something like that The idea was to show something that was important to you. Some showed culture, some holiday scenes, family. Livie's art was called "Koosh Ball" and was a stained glass-looking 3-D piece with colored paper inside the 'window'. Now that we 'saw' it on the screen during the presentation, we knew what to look for. We scoured through the dozens of paintings until finally we found it next to the 'title' of the exhibit.

As we stood there admiring it, I got a tap on my shoulder. it was a person from the group who had sponsored our school, VSAarts. They said it really looked best with back lighting, when the light would shine through the colors. It really WAS a beautiful and impressive piece. I was really touched with VSAarts work with the disabled, and proud of my daughter, and I think it showed, because it reflected in their eyes. I thanked them profusely and Me, Livie, Aly and Jason wandered around the show, admiring the other work and hanging out to decompress and eat some of the spread that was left. At 7:25 we left 5 minutes before the exhibit closed for the night. A little over 1/2 hour spent, but we got a month's worth of joy out of the experience. We packed back into the car and drove back to the highway and hit the rest stop on 95 to get some dinner. We had a great time eating MickeyD's and goofing on their play area (or lack thereof). Back on 95 and Aly had fun taking pictures of everyone. The Cross Bronx backed up again near the bridge. We finally got home again just before 10 PM.

the final tally:
Total hours on the road: 5 hours 15 minutes
Total time at the exhibit: 32 minutes
Total dollars spent: 28 dollars, including ice cream, chachkies from the rest stop in CT and the 2 dollars from the pizza place which Aly kept.
Total Joy: Priceless

(glad I finally got that one out)

Monday, May 25, 2009

At Least Once a Year...


It should be 364 days a year, then we should try take one day a year to try and forget; as it stands, we spend today trying to remember them. Never forget their sacrifice...
_____________________
Not to diminish from those who have given the ultimate sacrifice, but I'm sure they would not mind if I tagged on to this post some information for their brothers and sisters and their families from Wrightslaw about issues that face military families with special needs children. God Bless those families out there, if I can help any one of them with this info, I can put in my 2 cents towards the billions of emotional dollars we owe you as well:

Saturday, April 18, 2009

Playing House Again...




Yup, we're home all weekend, playing 'House'. Unfortunately, it does not involve any kind of standard domestic bliss. This House is the doctordrama on seemingly on every cable channel on the planet. It's one of those shows that is probably playing somewhere in the world 24/7/365. If you don't know the premise, Dr. Gregory House is a diagnostician par excelance with an attitude that makes Don Rickels look like Richard Simmons. He spends his hour on the tube with his fellow doctors sifting through the various possibilities that could be making his patience bleed through their ears, making them see visions of Abe Lincoln, or whatever the bizzarro symptom of the illness of the week is.

Back to the past, Friday we took the day off to give the kids a well deserved fun day out. We had planned on the Bronx Zoo, and the world class effort it would take to get all seven of us out before 9 to beat the rush to get the best parking. But as with seemingly every other best laid plans, Livie woke up at 3 and didn't go down until 5, leaving me a little too tired to motivate the other half to get up, who was up until 2 getting stuff ready for the voyage. This is fairly normal for Livie, but this time when she was up, she seemed more agitated than normal; she was upset and crying at points rather than just awake and playing.

We wound up going to the lesser zoo in Staten Island on Friday, 2 hours less travel time total and no guilt missing any animals; we covered the place from stem to stern in a little over 3 hours. But all were satisfied with the place and we'll probably go back again when in a pinch for something to do. But Livie wasn't exactly herself again; not that we were overly concerned, she just wasn't eating like normal and she was just a little too compliant. The kids were all pretty great aside from a terrifying 5 minutes when Grace wandered away in an exhibit under the radar. 75 new gray hairs, 336 days off our lives, but all's well that ends found.

We made a proclamation to the kids after we got home that we would try and get to the New York Aquarium on Saturday; again, get out early and beat the crowds. We realized we were thwarted earlier in the night at least. Linda, the night owl tells me she was up around 11:30; me the early-to-bedder realized we were in trouble around 12:15 when I heard that blood curdling scream of Livie in discomfort. I held out in bed until 12:45 and finally came out; realizing that in Linda's shoes, I'd be looking to the bullpen for the relief pitcher by now. She had given up on comforting Livie by now; there was nothing that was consoling her at this point. She had been given the 'standard' sleep potion an hour ago (chamomile, Valerian root and her prescription Clonidine), but there was no signs of sleep coming; something was definitely bothering her.

I decided to go in and try and calm her down and evaluate the patient. I had woken up from a pretty deep sleep, mind you, so my diagnostic skill weren't exactly at their sharpest. But like any other parent in the middle of the night has learned, you have to take the emergencies when where and how they come, and night is the triage that you really have to get right. Here we go: Patient: 6 year old female, non verbal autistic. Since patient cannot convey what hurts, we need to diagnose from behaviors. Behaviors: uncontrolled screaming, kicking, holding hands on her ears, no desire for food or drink; general agitation toward anything and everything. Much as I'd like to claim to be House himself, I'm more like one of his flunkies; my focus was on the ear holding, I was looking at the strong possibility that she had an ear infection. House, I mean Linda, had another diagnosis: constipation. She had all the symptoms on her side: she noted that the last time the patient had a BM was Wednesday night, and it was strange. She also had not been eating as well as normal the previous night and Friday.

I was still hedging, I had not seen her pull up her legs or react favorably to a belly rub, so I still had ears as an equal possibility. So now, just like in the show, we have to weigh treatments. We gave Motrin; that was pretty much a no branier. Linda also talked me into Miralax; a prescription stool softener that would surely help start the battle against impacted stools if that were the case. She rationalized that this would be the steps that the doctor would take if we took her on Saturday and she could not see any outward symptoms of constipation. It would blow and chance of going to the aquarium, but that was pretty much shot anyway. So we began treatment and waited it out. Linda laid with her and Liv fell asleep moaning at around 2; I made like House and kicked off early.

I got the early shift; 7am Grace walked out of our room and I followed, only to find Livie already out on the couch. She was very lethargic but no fever. Usually, with an ear infection the fever would eventually show up, my hypothesis was rapidly fading. She still didn't want to eat; now she was even hesitant to drink. By noon, she hit another crying jag and Linda House was pushing for more drastic measures: three words...e-ni-ma. As long as I was the holder and not the kicker trying to get it between the uprights, I was okay with this. Because this is network TV, I'll cut out the graphics and just say, after 15 minutes, the kick was good and our child seemed much much happier. The 'kicker' was that she was actually hungry for dinner tonight and there has not had any outbursts since.

We are now doing all our Sunday jobs today, in an attempt to get the aquarium tomorrow; our three kids were troopers today missing out on a simply gorgeous day for our little medical crisis. I hope that we finally both get a full night's sleep tonight and we can be energized to hang out withe the fishes tomorrow. Another happy ending brought on by good diagnostics.

Friday, April 03, 2009

Post Mortem


I have to finish up the deer story, because I had so much fun with it this week. First and foremost, my yard is now doeless, Jane was taken away on Thursday afternoon. The cost was less than the 300 dollars originally quoted. But when I got home Thursday night, my mom-in-law confronted me saying "I would have done it for 50! I could have made a couple of bucks..." The ditch digging careers were short-lived for me and Dillan; no way I was spending a rare weekend off in hard labor; besides, the rains in our area have once again turned our backyard into Lake Monmouth. I would have had to weigh her down with boulders to get her to the bottom.


My best moment, however, was April 1 at work. My whole area was well versed in the now legendary ex-deer and my predicament. Late in the afternoon, I called home and got no answer, so I held on the the receiver and decided to have some fun.


"Hey hon, did the guy come yet to pick up the deer? What do you mean your mom went back there? No, no no your kidding me? With a KNIFE? Wait, wait when did the cops get there...and she was bloody? OK, OK, OK calm down! I'm sure the neighbor across the street can watch the kids while you go down to the station. I know I know, but Aly can watch the girls. OK, you want me to come home? What's that? APRIL FOOL?"


Suddenly, the office broke out in quiet snickers, as they had heard the whole story. I retorted and held up the receiver and said "The jokes on YOU all, there's no one on the line!" I had been looking all day to get them and I finally did!


My performance was nominated, and I'm sure it will win, the Robert Newhart Academy of Telephone One-sided Conversations Award... affectionately know as the 'Phoney'. I am out a tidy sum getting rid of that animal, but I sure did have some fun with it!

Thursday, April 02, 2009

Autism Awareness Day


I feel remiss of late because I have not been heavily focused on the area of talking on the internet and fighting for rights and legislation and general visibility for those on the spectrum and those who care for them. Today, of course, is Autism Awareness Day and I think many families on the spectrum are in the same spot that we are in: we have far to much to do to spread awareness. I did wear one of my Autism Awareness golf shirts to work today; I still got berated for being late for a meeting because I choose to help my wife get my two autistic girls on the bus in the morning. There are far too many people out there who have that 'pick yourself up by your bootstraps' attitude and refuse to believe that THEIR priorities are THE priorities and that accommodations are for the weak. I however, have grown to a new understanding and have new definitions for the words 'accomodation' and 'weak'.

I've had a very weird and tough week and much of what I have had to deal with has had nothing to do with autism; but I find that, in many cases, it indirectly does. Late because of the extra accommodations my daughters need to make sure they get on the bus; I'm tired because Livie got up in the middle of the night (it's been much better of late, but still); my wife's still ferrying the girls to after school therapies. We always have that specter of whether we are doing too much, not enough and what is best for each girl.

I guess that is what I'd like everyone to be aware of: that it is still a daily struggle. But then again, after 4 years on this road I have grown so much in my capacity to appreciate the small things in life. My love for my girls and pride for what they have, can and will accomplish knows no bounds. My pride and love for everyone in our family and how they have grown to meet this challenge as well, astounds.

I just hope that every family dealing with autism can grow in their capacities the way ours has over these past 4 years. Yes we do need 'accomodations'; but we are far from weak. God bless us all and those looking from the outside into the spectrum, keep us in your thoughts today, this month and throughout the year...