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...

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.

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...

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?

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...

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!

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!