The Bare Necessities

Today I had what I commonly refer to as the autism parent unrelated emotional meltdown. These occur every so often and have nothing to do with what's currently going on (though there is always a trigger). They're usually no more than a complete breakdown and sadness spiral, and almost always occur in total privacy (for me that means in the car ride to or from work). Simply put, it is a culmination of a few months worth of stress and aggravation and diminished expecatations that produce an extremely visceral reaction to song lyrics or a passing scene on the road.

A few months ago it was "Don't Look Back in Anger" by Oasis. More specifically, me imagining Mowgli's sister performing on a popular singing contest TV show while Mowgli harmonized or played tambornine. I cried hysterically in the middle of traffic. It had nothing to do with the song, because I haven't been able to replicate it since then. It had to do with the cumulative stress of Mowgli's autism. Note: please feel free to judge the weirdness of this, god knows I would.

Today it was "Say Something", the song by A Great Big World. Particulary the chorus:

Say something I'm giving up on you

I'm sorry that I couldn't get to you

Anywhere I would have followed you

Say something, I'm giving up on you

I suppose I don't need to explain why this set me off, but I do feel that I need to clarify. Obviously I would never give up on Mowgli. It simply isn't an option. Yet I've written in this blog before about expectations, and I think that even with minimized hopes it is hard sometimes not to feel so utterly powerless that, expectations or not, you've failed as a parent by just about every standard.

For many years now a few of Mowgli's issues have not progressed at all. Speech, OT and PT therapists all concluded at his most recent IEP meeting that reducing his therapies one day a week wouldn't matter, because his progress is so slow as to not be effected by the change. They care about him, and I can tell that it bothered them to report that news, and although Amy and I took the whole thing in stride, it will never be easy to hear that your child isn't responding to the most intensive therapy and that he may just be stuck where he is forever.

That kind of information is only bolstered by the fact that the issues Mowgli has at home have changed very little as well. The extreme tantrums (though reduced in quantity are equal in intensity) the interrupted sleep pattern and of course the big one - potty training (which has been at an absolute stand still for the last three years).

Those things build up. They weigh on you as a parent, whether it truly is your fault or not. Autism will do that. It's an extra fine sandpaper, slowly and gently grinding away your patience and confidence. Little by little you become complacent with the fact that there may not be a solution. You come to terms with the idea that your child might be stuck at 5 years old, in certain aspects at least, for the rest of his life. You start thinking in terms of forever. "He'll be in diapers forever." "He'll NEVER speak beyond a three year old level." Never. Forever. Permanent.

And then, one Friday afternoon, your son walks into the bathroom, sits down, uses the toilet and demands privacy while doing it. Then he stops peeing in his diaper at night. Then five days go by and he uses the bathroom every day, unprompted. And then, with any luck, it continues. And then your son is potty trained. If nothing else, you know that you won't be changing some dude's diaper in 10 years. And life seems as though it is moving on whether you want it to or not. It is beyond your control.

That's what set me off today. That's why I sobbed uncontrollably. In a way, my tacit acceptance of the possiblity that Mowgli would never progress was me giving up on him. I had begged and begged for him to say something, anything, and for years I heard nothing in response. And then, just when I was emotionally walking away from potty training - he decided that it was time and that he would move forward - in a way, with or without me. And that hurt. It saddened me, because I felt that I should have hung in there forever. I should have never given up on him.

I'd like to think that I won't ever give up again, but I can't promise anything. If nothing else, it is an effective defense mechanism, and sometimes the preservation of your sanity by thinking realistically trumps blind commitment.

In the end, and ironically in honor of the title of this blog, what I really need to keep in mind is the importance of the bare necessities, and to not worry so much about the relative forever-ness of things, because:

Don't spend your time lookin' around

For something you want that can't be found

When you find out you can live without it

And go along not thinkin' about it

I'll tell you something true

The bare necessities of life will come to you.

http://youtu.be/9ogQ0uge06o

A screenplay unfinished

I've started reading a book on plot development in anticipation of re-igniting my lifelong attempt at a screenplay. I've never had an interest in the great American novel, mostly because no one seems to agree what that looks like, and conversely it seems, at least to me, that most people can agree on what makes a great screenplay.

The process of starting a screenplay has always been quite easy for me. The process of finishing one, on the other hand, has never been accomplished. I've always destroyed the draft in frustration. For years I've believed that my biggest obstacle has been getting my character out of the proverbial conflict tree. Getting them up the tree? Easy. Getting them back down again? Seemingly impossible.

I think I've realized why it is so difficult for me and why so few people have written truly great screenplays - it's because you have to be willing to use some sort of artifice to get your characters out of that tree, and I quite frankly don't want, or rather just can't, do that. I leave my characters stuck up there forever, because I don't want them to come down. Who are they to get that benefit? Why should they get to come down while the rest of us are stuck up there? It has just always seemed patently unfair to me that EVERY character (I'm generalizing) gets the satisfaction of closure, when no one ever gets that in life.

For years I was obsessed with the Princess Bride, and its comical but sincere depiction of true love. I read an interview with Robin Wright a few months ago where she described (quite painfully) her divorce, and the difficulty she's always had with relationships. Why does Buttercup get closure, but Robin Wright can't?

At first glance, Casablanca seems beautiful for its sadness and its depiction of love lost, but if I had written the same screenplay, Ingrid Bergman would have taken a job as a waitress, and they would have awkwardly maneuvered through each other's lives, arguing behind the dumpster on smoke breaks, constantly getting back together, breaking up, getting back together...

Please don't take this note as some naive statement that life isn't like the movies, and people don't ever get to have what they want. It would be folly for me to take that position, as I know a number of people who regularly get what they want out of life. What I'm arguing is that regardless of whether life gives you lemons and you choose to make lemonade, or if you're one of those people who found wealth and love and the perfect dog, you're still stuck up in the tree with the rest of us, many holding the shitty end of that flowery branch.

In the end, no one gets to leave the tree.

I strongly considered not putting this in the blog, because I thought people might be turned off by the fact that it wasn't about autism. But please let me assure you, for me, it is exactly about autism.

Since my son's diagnosis I've desperately wanted to develop, and adhere to, a standard schedule of character development. Autistic kid goes up the tree, faces conflict, overcomes conflict, climbs down and saunters off into the sunset. I'm realizing, only now, that it won't work that way. Autism is for life, and he'll be up in that particular tree forever. Things will certainly change, as evidenced by a mother with an autistic teen that we met a few days ago that insists that Mowgli is just like her son was at that age (her son, though admittedly having a good day, seemed more than happy with his life - and quite functional). Despite such reassurances though, which are nice, the plot doesn't resolve itself. There's no exhale, no time for reflection on what is the great conflict of our lives. Just glimpses of what type of conflict the future might hold and a chance to guess at how we might handle it when it comes.

I think the hardest part of my screenplay writing process (if there even is one) is how to make all of the conflict trees work together. Why isn't love like the Princess Bride or The Notebook? Because the characters in The Notebook only have to deal with the issues associated with one conflict tree - the tree of love. In real life, love exists in the spaces between the many branches of many different, converging conflicts (I'm punishing this metaphor, no?). Special needs child, career, neurotypical child, finances, extended family, mental health, exercise, down time. Somewhere in between those branches is love - dispersed like a vapor. Collecting up that vapor and making something of it, while dealing with all that other conflict, usually creates a bearable, functioning love. Not even Ryan Gosling, with all his unabashed dreaminess, could sell you that bag of goods - "darling, I don't want anything else, I just want thirty years of bearable love - a love that can only function amid endless conflict."

Do you see my problem here? I'd write a screenplay where Ryan Gosling has a special needs child and then takes out his frustration with that fact on Rachel McAdams, who slowly develops a nagging resentment for him amid an overwhelming mom-guilt that can't be repressed. The movie never ends as they struggle to find themselves and squeeze a nap in every once in awhile. They love each other in a bearable way, buy each other their favorite candy bar on a whim for instance, or share a laugh over a TV show. Given zero conflict, and all the time and resources in the world - they'd be kissing passionately in a never ending rainstorm of love. End scene. Instead, they just try and grab up enough vapor not to lose one another, because they're no less passionately in love, it's merely a question of plot development.

Having children creates its own set of branches to maneuver around. Having a child with autism creates additional branches on top of those - thick, snagged branches that leave very little room to move. But no matter how tangled they get, there's always spaces in between for love to exist, and there's always ways to collect that vapor and to try your best at making something from so little that life sometimes affords you. That's the ending to my movie that no one goes to see or never even gets made. The characters just do their best to live within those spaces and all those moments - happy, sad, or otherwise, never end - they live on forever as part of the framework. The screen never goes black, because after that passionate kiss in the rainstorm, someone's still got to change that shitty diaper.

I hate you Autism

I hate you Autism. I hate you with an endless fire and ceaseless passion.

Autism - odorless, invisible, dangerous - like an emotional gas leak - it has to always be monitored lest you risk putting people in danger.

I hate you when I fall asleep at night and I hate you when I wake. I hate you at three in the morning when you rouse us from sleep for no particular reason.

I hate that you claim ownership over my son. That you limit his speech. That you paralyze him socially. That you confuse and frustrate him. You're a bully - and the worst kind of bully - one that hides behind the eyes of a kind and beautiful boy where you're sure that w can never reach you. You're a ruthless tyrant - and for that, I hate you.

But we will get you Autism. We will fight you with all of our hope and our love and with every last fiber of our being. We will hunt you down and we will get you. We will chase you into the darkest, scariest places. We will cut you down, piece by piece, until there is nothing left of you. Until there is only the beautiful, happy little boy that you currently inhabit.

We will beat you Autism, whether by hook or by crook, we will beat you. And though you may not be curable, and though you may mock us and laugh at us for trying - remember this - we don't need to cure you in order to beat you.

For us, victory will be claimed when we know, without question, that our son is truly happy and that you no longer control him. That day will come. Perhaps not today, and perhaps not tomorrow, but it will come.

And on that day, and on every day that a child that you bully frees themselves from your tyranny - we will rejoice, because we hate you Autism - but we love our child more.

Traveling with Autism

There are many things about parenting an autistic child that differ from neurotypical parenting, and some of those things we have touched on in this blog.  Yet nothing can be more starkly different than traveling with an autistic child vs traveling with a neurotypical child, particularly as it pertains to traveling for a holiday.

Though Mowgli has always had very few issues with the actual car ride (we've never flown on a plane, the mere thought of which makes me "listening to Jim Croce while drinking" suicidal), we do like to provide him with some form of back seat entertainment, and to make frequent stops to get out and walk. Though this sometimes results in minor meltdowns, or the occasional "perseveration nation" (the non-stop repetition of a single phrase or word - ie Go see Unca Chuee - a combo of Charlie and Suee - approximately 165,000 times) it, for the most part, works out. The exception to this was the last bit of the trip to the Outer Banks along NC Highway 12, or as I call it, the Trail of Tears (anyone who has traveled to the OBX knows this last stretch of road well - though most travelers don't make it to the end, they get out of their cars and drown themselves in the ocean, as it is preferable to driving that route to its terminus).

The most recent car trip we took was extra special thanks to the addition of Grandpa and Grandma's most recent birthday gift - portable DVD players.

Here's a shot of Mowgli's reaction:

Awesome, right? This leads me to what I hope will be the takeaway from this post - traveling with autism is a chaotic, painful, sometimes scary roller coaster ride where you're struggling to maintain control until the next beautiful moment - like the one shown above - a moment of happiness, calm, sleepiness - anything other than abject discontent. In the end, you have to hope that those moments get you through it.

I tried to capture those moments photographically so that I could string them all together. I wanted to do it not just for the purposes of this blog, but to show you what I mean by the beautiful little moments of hope. These pictures are all wonderful little memories - tiny warm fuzzies that live inside a loving parent's heart.

The difference is that these little moments are sandwiched between epic meltdowns, self-injury, perseveration, an obsession with turning the lights on at 4:30 in the morning, angry travel constipation (a Mowgli guarantee on any trip), sensory overload, confusion over new surroundings or a different schedule, and perhaps even, if you're lucky, a drowning scare.

On the second to last day of our most recent trip, Mowgli didn't want to use the pool in the morning, because of his constipation. I took his sister instead, which meant that I had to go in with her. After she was done, Mowgli felt better and wanted to use the pool. By then I had already gotten dressed so I decided that I would take him down there in my regular clothes (the first time I've ever gone without a swimsuit). When it was time to get out, Mowgli decided he would go to the deep end of the pool and float in the center, where I couldn't reach him (there is some debate as to whether or not this move was intentional). He stayed there, despite my protests, until he couldn't hold himself up any more. He sank like a rock, I stripped down to my boxers, and then dived in to get him. He gagged for a little while but had no other ill effects. In fact, he laughed hysterically as I screamed at him in front of the entire hotel lobby/brunch crowd (not comprehending fully the danger he had faced, or the reason for my anger, and focusing instead on the hilarity of his old man, soaking wet in his underwear, with a washcloth held in front of his crotch (the only towel they had left by the pool), screaming like a wild monkey, while everyone participating in the Red Cross Blood Drive in the lobby looked on in an odd combination of disgust and confusion.

Having sworn off future vacations for the third time that weekend, we ended up staying until the end anyway, choosing to leave after he swam one last time on the last day. Since that occurred at 5:30 am we were out of there pretty early.

Again, I don't want people to think that I don't see how holiday travel is stressful for all parents, I just hope that other people can see the difference between the two, and as always, understand that we aren't trying to avoid our friends and family on the holidays, we just need to be in the right frame of mind to make that trip, because the next trip we take might very well have a lot of those beautiful moments, but it might also have none, and we need to be prepared for the latter, something that quite frankly isn't easy to prepare for.

Twelve pounds of s&$t in a six pound diaper

For many of you without children, just the idea of handling another person's excrement is enough to make you gag. For those of you who have children or are expecting, and who were squeamish about the idea beforehand, nature created meconium as a sort of field test for new parents. Meconium is essentially nature's practical joke on new parents(http://en.m.wikipedia.org/wiki/Meconium). It sticks to everything but the wipe, making it extra confusing when you haven't slept and have never changed a diaper before. It's also a treat that it is the first thing you see coming out of your child - not exactly calming.

Meconium - the joke's on you!

That said most people get through the diapering period with relative ease and are rid of the whole diaper changing issue after 2-3 years. Not so for most parents of children with special needs, and definitely not so for us.

Jump ahead six years (and for many special needs parents, this is an issue forever) and those relatively cute poopsie whoopsies become, as the saying goes, twelve pounds of shit in a six pound bag...literally.

Your sixty five pound child can no longer be laid on the ground to be wiped, so you're left to your own devices in terms of cleanup, which I imagine is the equivalent of asking a small bear to bend over (like the Charmin commercial, but not like that at all).

The "baby wipes", aptly named because of their intended use in wiping little baby butts, generally tear under the pressure of having to wipe a giant boy ass. This leaves your hands essentially unprotected, and if you've never noticed, the human hand fits perfectly in the human ass crack, and if you're curious, that rule applies to all ass cracks, not just yours. Truth be told, running your bare hand accidentally up a shitty ass crack is as horrible as it sounds, and becomes even more horrible each subsequent occurrence.

Does anyone have any idea how much adult diapers cost? We do, but only because we're price conscious and don't want to buy giant boy diapers if we can find petite diapers for seniors at a cheaper price.

Ever had a minor accident and had to throw your underwear away in the bathroom at work (be honest)? Think about what would have happened had you released the hounds into those undies. Go ahead. I'll give you a minute to think about the unholiness you would have had to deal with. That's what it's like to change a six year old diaper.

So you'll make a size seven Pampers, but not a size 13? Assholes.

This issue has been particularly stressful for us, especially as Mowgli transitions into full time schooling. As bad as it is for us, no teacher's aide, at minimum wage, should have to deal with such things. Sometimes we worry that he'll never fully train. Other times we laugh, because that's the only thing you can do when you find someone in their closet giving his cakoo the ol' Jackson Pollack treatment.

We've tried everything at this point, but this just seems to be one of those things that Mowgli is struggling with, and until he figures it out, we just have to do our best to not make it stressful for him, and not stress too much about it ourselves. That, and hope Pampers keeps expanding its offerings and that every hotel pool has a corresponding locker room where I can eliminate the evidence of a Mowgli water birth (thank you Sheraton Hotel - South Burlington!).

*Fun blog postscript- while writing this, Mowgli ruined another pair of underwear. True story.

We've got a runner!

Mowgli's always been a bit of an explorer. In fact, it was the reason we installed the fence when we moved to our current house, and the reason that I'm rarely seen at outdoor events (since I'm usually following Mowgli out into the wilderness).

Recently though, we've been forced to up our security because he's made two independent efforts to escape from our house. In both instances, Amy caught him, barely clothed, about to cross a very busy intersection. Additionally, while I was cleaning his room the other day, I found the following map, with a number of notations:

Rather than jump to conclusions, I decided to shake down one of his little buddies after a session of Pool Pals. He told me that Antonio had approached him, as a boy who knew "how to get things" and requested a rock hammer for, you know, making chess pieces.

Without that evidence, I probably wouldn't have thought twice about him asking us for a poster of Miss Rita Hayworth and staring longingly at Amy's painting and mumbling something about Mexico and starting over:

Taken together, we became slightly paranoid that something was afoot. Therefore, we instituted the following security protocols:

Security Protocol Alpha: Amy and I - Alpha, though solid, can be divided and conquered by other inmates, and is therefore not entirely reliable.

Security Protocol Beta: Handle locks and child proof door handles. The handle locks work, but only the ones that require a push button key. The twist lock is meaningless. The child proof door handles only work if they're the ones that are discontinued because they're essentially a fire hazard because adults can barely work them. Mowgli just breaks the "safe" ones. That said, we found a website that sells the discontinued ones. Bought them out.

Security Protocol Gamma: Door stopper. Totally ridiculous. FAIL.

Security Protocol Delta: Hook locks. These work, but he has figured out that if he can dangerously and precariously balance on top of random items, say, oh I don't know, at the top of the basement stairs for instance, that he can flip the hook. Nevertheless, it is certainly a deterrent.

Security Protocol Gamma: Cheap ass magnetic "alarms". This is essentially a noise deterrent. We figured that if something makes a loud enough noise, that it will at least slow him down. It has, but he's quickly piecing together how it works. We're hoping that the aforementioned child proof handles show up in the mail prior to that moment.

Security Protocol Ockham's Razor: You see that little switch next to the screen door handle? Apparently impenetrable. There you have it folks - the wonderful and awe inspiring problem solving of an autistic child - halted by a tiny little switch on the handle of an outdated screen door. Probably not going to last too much longer.

As funny as some of this sounds, it is only outdone by the circus performance that Amy and I have to go through in order to execute this seamlessly without escape, and at the same time not locking ourselves out of the house. It felt like it took three hours to bring the groceries in the other day, and our already frayed nerves can't take one more "false alarm" from the "Doberman Security" system that we've installed.

In the end, all of this is just smoke and mirrors. If and when he decides he wants to do something, Mowgli will figure it out. He is driven by an unquenchable urge to problem solve, but only if it involves obtaining popsicles, or some other preferred activity/treat. In fact, in my next post I'll discuss his cybersecurity attack on our home computer in order to watch an edited video of Blue's Clues on YouTube where someone drops the F Bomb. So is the nature of this very frustrating condition, he struggles to solve basic life skills issues like potty training, but is able to solve a series of (albeit low-tech) counter measures so that he can escape our vile clutches and run naked through the streets.

Things Mowgli Loves and Things He/We Can't Live Without

I'm stealing a concept from another Autism blogger (autism-daddy.blogspot.com), who, by the way, I highly recommend. That said, I thought I might take some time out and describe, for any of you who might be interested, what Mowgli loves, and therefore what we love, because he loves, because we probably wouldn't make it without them. Seriously, you might look at some of this stuff and think "Really? He could probably live without that", but by way of example, his brain thinks it is his turn on the computer right now (as I'm typing), and his inability to get it immediately has caused him to scream uncontrollably and punch his head for the last 25 minutes. If you're still thinking that he could live without some of this stuff, go ahead and pick up a nice book, pour yourself a hot herbal tea, and then try and read while your friend/spouse/significant other screams hysterically in your ear until they faint from exhaustion, because that, by the way, is the only thing that will stop him.

Here we go:

1. Popsicles - Who doesn't like a good popsicle on a hot summer day? Pretty much everyone can appreciate the cooling sensation and sweet hydration that a popsicle provides. An entire box of them in January? Not so much. Though we're sure that the sugar isn't the best thing for him, we do our best to give him Edy's "All Fruit Juice" popsicles (I smell a Dad of Year award!). Without popsicles in the house, he would ask for them continuously until they appeared. This is no exaggeration. He will perseverate until they arrive, non-stop, for days at a time.

2. Chex Mix and Combos - Why Chex Mix and Combos you ask? Who the hell knows, but God help me if I haven't rationalized that they are a healthier-ish option than potato chips (which he also loves) and other snacks. I'm certain that most of Mowgli's calories come in the form of Worcestershire sauce. We've also just considered buying him salt licks - though the cost/benefit analysis doesn't seem to quite work out.

3. Swimming - Mowgli loves swimming. He'd probably spend his entire life in water if it was made available to him. I'm certain that if I turned my back for even a minute at the Syracuse Zoo, he would take up permanent residence in the penguin tank (who he affectionately refers to as his "babies").

4. Exercise Ball - You know those exercise balls that fat people on The Biggest Loser hysterically tumble off of nearly every episode? Mowgli spends approximately 5-6 hours a day bouncing on one. The result? Rock hard baby abs (that is as creepy as you imagine it). He's coincidentally shaped like a 1920's strongman - barrel chested and loin-clothed/diapered. He's just missing a handle bar mustache and a bicycle with one giant wheel.

5. Eyes - You heard me. Eyeballs. It is actually part of his behavioral plan at school, because he's trying to touch people's eyes so often and he obviously can't continue to do that. The only thing worse than touching eyes you ask? How about licking them, which he also enjoys if available. Here's a picture of him licking what I imagine would be the location of this inanimate object's eye sockets (he does it every morning before he gets on the bus - notice the "neck" grip):

6. Computer/"Reader" (Tablet)/YouTube, etc.

Mowgli loves electronics, but not because of their incredible ability to teach him a variety of important life skills and knowledge, but because he can watch things like Nyan Nyan Cat over and over and over and over.... He generally likes watching 5 second pieces of his favorite shows on YouTube until he's in a trance, or laughing hysterically, whichever he decides is the mood of the day. Sometimes he watches total nonsense and sometimes he stumbles on things that he probably shouldn't, but get through any screening or blocking software because the person who created it on YouTube names the video in such a way that it doesn't get picked up. What did special needs parents do prior to YouTube? My guess is lots of drugs - because without continuous access to his favorite shows, I'm not sure we could keep Mowgli from total self-destruction on a day-to-day basis. Thank you two guys from YouTube who are billionaires now - as if you needed my thanks.

7. Swinging - I've mentioned this before, but the kid loves to swing. He loves the feedback that he gets (that nausea that you and I feel when we swing that - he craves). Again, like the computer, many summer days would have turned out far less positively if it weren't for the swing set (and the mini swimming pool).

8. Hugging - I've touched on this before, but it bears repeating since it is generally out of character for children with ASD to be super affectionate. Mowgli loves to hug, and we love to hug him. It is the best way for us to interact emotionally that doesn't involve crying or screaming.

9. Comfortable Clothes - Ever tried to build an entire wardrobe around athletic pants and "non-itchy" shirts (the consistency of that definition changes daily by the way)? Not fun, and after the age of 3, very difficult (just ask my mother, who has spent the better part of three decades trying to dress my father in this way). Regardless, my beautiful wife has found a way, again and again, to outfit our son comfortably, and fashionably. She gets a number of compliments about how well dressed Mowgli is, and she should, since it takes three times as long to find him clothes that work for him and yet it all looks so effortless.

10. Melatonin, Probiotics, and Bears....oh my - Having an autistic child take medicine is next to impossible, therefore making sicknesses even more unbearable for all parties involved. In addition to the occasional sickness are the day to day ailments that are specific to children with ASD, like problems sleeping, and GI issues. I would like to thank modern science for having the decency to put things like melatonin and probiotics in the form of gummy bears and chewable "candies". Without them, Mowgli would struggle daily with painful constipation (despite his love of beans and bean burritos) and would not have come out of his recent, two month "sleeping slump" where he refused to go to bed every night, and then slowly became overtired, at which point he would come apart at the seams emotionally and scream himself to sleep (rinse, repeat, rinse, repeat - every night). Now, thanks to those wonderful little hippie medicines, he's back on a consistent sleep schedule and quite regular (which is a nice way of saying "shits like a thoroughbred" - a quick thanks goes out to diaper companies for making sizes that are at least somewhat capable of containing such an unholy mess).

Though there are other things that Mowgli loves, these are the things that keep our little family sane, so if you're ever wondering what to get him for his birthday, just check this list and go for it.