FLIGHT RISKS

“Do not brood over your past mistakes and failures as this will only fill your mind with grief, regret and depression. Do not repeat them in the future.”

-Swami Sivananda
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Some children on the Autism spectrum are flight risks. Ours is one of them.

I still remember the first time I discovered that our Autism puzzle included the flight risk piece. That was several years ago now, but it still makes me sick to think about it.

On a bright, sunny and crisp Saturday morning , following one of our son’s night waking episodes, I thought the least I could do for my wife was get the kids out of the house and let her sleep peacefully. Our oldest had a soccer game at a large multi-field outdoor complex, so I figured I could do it all – watch the game starring the oldest, manage the effects of Autism in his little brother, and claim to be a super-husband. (Yea, right).

I knew that keeping the Little Man in a relatively small area in an extremely large, open outdoor soccer complex, with hundreds of kids, would not be easy. He almost never stays still, acts impulsively, and has a non-stop motor. So I formulated a simple plan: 1) Hold him for as long as I could; 2) give him snacks; and 3) give him electronics. I only needed to kill an hour, so I figured that would suffice. I was confident that the day would be a resounding success – perhaps a little too confident. I thought I accounted for everything. And, maybe I did. That is, everything except my own personal failings.

The holding and the snacks got us though about half the game. Still, I tried holding out the electronics as long as I could. Electronics are like a drug to him, so we really try to limit exposure as much as we can. In any event, I was so certain that once I gave him the electronics he would be so engaged in that activity that he would be easy to corral. Still, I waited. Every few minutes he would wonder behind me, down a slight grade into a water retention area. He loves splashing in puddles. I would promptly chase him down and lead him back to the sidelines. A few minutes of that and I was ready: electronics time.

I showed him the little portable V-Tech game and sat him on a blanket right in front of me. He sat calmly and quietly and started to play. As a fail safe, I decided to stand in such a way that he was under me, sitting right between my legs. That way, I thought that if I looked up to watch the game, I could feel him move beneath me. I thought wrong.

I remember that day like it was yesterday. Sunny. Not a cloud in the sky. The joyful sounds of children playing and parents cheering. I remember my oldest: running down the side line, chasing the pack of would-be soccer stars. Smiling. I remember thinking about how I could help him be a better player. I remember thinking about when I played soccer and trying to compare my oldest to me. I remember thinking a lot of things. But that is the problem. I was thinking. Worse, I was daydreaming. I do not know how long I was out of it. But, one thing was for certain- it was too long.

When I looked down to see the Little Man, he was gone.

The panic did not set in immediately. When I did not see him, I figured he just went back to the little gully behind me, back to the puddle. He did not. It was then the panic struck.

I looked around in a frenzy. All over there were little boys and girls running up and down soccer fields. There were waves of parents and grand parents clapping and cheering loudly. There was so much noise and motion. I didn’t see him. He does not respond to his name, so yelling for him would have been useless. I was almost paralyzed with fear. I quickly ran back toward the parking area and away from the fields of play. I figured that he would either be walking toward the parking area, or that I would have a better vantage point to survey all the fields unobstructed by nearby spectators. I slowly scanned every field back and forth. No sign of him. The adrenaline in me had now reached the level where I am sure I could have lifted a car. My heart was beating so loud I could fell it and hear it. My hands were shaking. I started running back to ask for the assistance of the parents on our sideline.

As I was running, I scanned the fields again back and forth. There was a break in the line of parents standing on the opposing team’s sideline. That is where I saw him. Two soccer fields over with a ball kicking it into the net. Not a care in the world.

I would say that all is well that ends well. But, I can not put a positive spin on this story. To this day, I cannot forgive myself – my carelessness. I would say to err is human. But as parent of child with special needs, particularly one who is a flight risk, you can not err. The one day you do not lock the gate, or the door, or the one day you get lost in thought or get distracted, could lead to terrible, horrible consequences.

Fortunately, I learned that lesson the hard way without the consequences.

ET TU, WOODY?

“Everyman has his own destiny: The only imperative is to follow it, to accept it, no matter where it leads him.”

― Henry Miller

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Sorry, Sheriff, but your speaking days are numbered. There is really nothing I can do about it. I will try. Oh, believe me I will try. But, you see, you are a marked man. That little string that comes out of your back with that little plastic circle tied to it is, dare I say, destined to be cut. I will delay it as long as I can, but the question isn’t if – the question is when.

Poor Sheriff Woody.

You see, when our Little Man sets his mind to something, it will get done. I think the author of the Gospel of Matthew was speaking to our little boy when he wrote “Ask and it shall be given to you; seek and you shall find; knock and it shall be opened to you.” Hide the ipad from him, he will find it. Lock the entertainment center, he will find a way in. I could bore you to tears with stories of the Little Man and his Sherlock Homes-ian ability to figure something out and to get what it is he desires – consistently out-foxing our feeble efforts to restrain him. We finally had to password protect our computer since no hiding space was safe. Still, we think he will figure out how to hack or bypass the password. It is comical to the nth degree. Except, of course, when it isn’t.

Did I mention his grandmother has some beautiful urban wall art in her study? Yep. It says MONKEY.  Right there on the drywall.  It miraculously appeared right after the Little Man found the hiding place for the Sharpies. (Sorry again grandmom).

But, back to our ill-fated law enforcer. Poor, poor Sheriff Woody. Santa was kind enough to bring the hero from the Toy Story series to our youngest, replete with an operational, voice activating pull string. Then the thought entered the Little Man’s head. The demons...

Attempt One: He comes to my wife holding the small stuffed doll, with the string pulled out and says…”Mommy, I want scissors please.” Uhhh… No we are not going to give you scissors to cut the string.

Attempt Two: This time sans Woody doll. “Daddy, I want scissors please.” Okay, not an unusual request since he frequently cuts his artwork out of paper. So I get the scissors out of the hiding place, I prompt him to say “Daddy I want to cut………” and he responds “Woody, please.” No. No. No.

Attempt Three: The Little Man stealthily discovers the hiding place for the scissors. And the Little Boy, who normally talks non-stop from wake up until his body shuts off, is silent. Silence is bad. I catch a glimpse of him running out of the kitchen and into our “playroom.” I got there just in time. The string was extended and the scissors were in place as I ran in and grabbed his cutting hand. New hiding place for the scissors!

You better get while the getting is good Sheriff. I hear the Sunnyside Daycare is nice this time of year.

SLEEP, MY PRETTY

“Know that everything is in perfect order whether you understand it or not.”


― Valery Satterwhite
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Sleep Issues (Part 2 of  ∞)

Yesterday provided us with the quintessential example of our falling to sleep issue (which has nothing to do with the actual staying to sleep issue -- stay tuned you will enjoy that too!)

So yesterday its January 2. The winter break is over and the school bus will arrive promptly at 8:20 a.m. the following morning.  And by “promptly” 8:20, I mean – not really promptly at 8:20- give or take 10 minutes. Like every other family on the spectrum or otherwise, we have to have the Little Man up, dressed, fed, and ready to go or we shall feel the wrath of the bus driver and/or the drivers of the cars who sit not-so-patiently behind the school bus waiting for him to get in and get strapped in.

[As an aside, you will not believe how impatient morning driver’s are. The short little yellow school bus stops outside our house. It is no secret what the short little bus means. It’s a universally understood symbol. We live on a relatively infrequently traveled suburban residential side street. But heaven forbid if you make a morning commuter, who could turn and avoid our street altogether, wait. We get looks, honks, huffs, and occasionally gestures. Really? I mean, really? Hey Mr. Impatient – the Little Man is a flight risk okay. We can’t stand by the curb for extended periods of time as we wait for the sometimes – on –time school bus to pull up. And, yes, he needs to be strapped in a harness. I know he is six and handsome, but he is also smart and strong, if he’s not strapped in, he’s running around. Again, did I mention it is a short, yellow, bus??? Sorry our little Autism got you a little late to your latte.  Maybe you should plan better. Or go on a diet and give up the latte - fatty.]

Wow, that felt good!

Anyway, my wife and I did it all. I took him and his older brother out for some heavy physical play and some new experiences. (Okay it was Bowling. I would tell you how went, but let’s just say I will confirm that the lanes on the other side of the foul line are VERY slippery and make it difficult to catch your child as he runs down the lane after the ball he just rolled toward the pins).  We wrestled at length.  I then took him out for a late night walk to gaze at the stars. We read books, got a bath, and he climbed in the “white bed” in a seemingly tired state at 9:00.  At about 9:15 Autism struck. A burst of energy you would not believe. I swear if I could bottle whatever causes that, I would make a killing selling that to professional athletes as a performance enhancer. Unfortunately, my poor wife had the difficult job of playing defense against that performance enhanced exhibition put on by Autism, as I had the much more difficult job (hehe) of getting the brothers to sleep. You, know the “typical brothers.” Let’s just say I fell asleep with them and woke up to the sound of the Little Man hooting and hollering something about Baby Einstein or some other muckety muck.

I would bore you with the details, but to steal a line from Seinfeld: yadda, yadda, yadda – he fell asleep at midnight.

Did I mention that you don’t tell Autism when to sleep – it tells you when its ready to go to sleep. Oh, yea, I did.  See my post: Wherefore-art-thou-sleep.html

UPDATE: The so-called SuperNanny has not yet taken me up on my challenge.

ROLLER COASTER

If I could travel back in time and say anything to myself the minute before you were conceived, I would hide in the shadows and say nothing. I would not change a thing.

-Me.

Life: It is about the gift not the package it comes in.

-Dennis P. Costea, Jr.
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I initially started this post with the thought of writing about one of the most difficult challenges Autism presents for parents: Unpredictability. Skills that appear to be mastered one day, may be forgotten the next. Language that was flowing one day is absent the next. Things that bring joy one day cause frustration the next. One day we see beautiful blue eyes engaging us. The next, we are lucky to catch a glimpse of those beauties as he spins, twirls and jumps not realizing we are there.

But today, I can not focus on the challenges Autism presents to me or my wife, or our other beautiful little boys. No. Not today. And hopefully not again any other day. Maybe it’s the dawn of the New Year. Maybe it’s the bright rays of sun pouring in the window. Maybe it’s the refreshing chilling breeze that greeted me outside toady. Whatever it is, I feel like today I stepped back from the trees (which represent all of the curve balls Autism has thrown our way) and saw the forest (which is our life). What a beautiful forest it is!

Last night, I took the Little Man to bed. The plan was to tuck him in, give him a kiss, and sneak out to whatever else I thought was so important to waste hours of my life doing. Right now, our bed time routine consists of the LM falling asleep alone in his parents’ bed (a.k.a. the “white bed”)– then being air lifted to his own bed (a.k.a. the “blue bed") when sleep beckons his parents. But as I laid him down, gave him a kiss and turned to walk away he said “Where is the Daddy?” Clearly he did not want me to go. So, I lay down next to him and sang him a song (with a voice not even a mother can love). Nine hours later (thank you wife) I awoke with that little angel still sleeping next to me. It is so serene to watch him peaceful and asleep. I could have stared at him for hours.

He woke when I was in the shower getting ready for work and went down stairs. As I finished getting ready, I heard him call, “Daddy, Daddy, Where are you daddy?” You would not believe how long of a ride it has been to get to that point. First, wanting my wife and I to be with him when he is playing and, second, taking the challenging step of actually asking us to do so. I ran down stairs to find him sitting in our Lightening McQueen tent. “Yes, buddy, what do you want?” He responded with a line stolen right from Green Eggs and Ham, “Would you, could you in a car?”

He wanted me in that car shaped tent with him – and was asking the best way he knew how. The perfect way. Work could wait a little – so I got in. What a way to start the day – me, the Little Man, the characters from Yo Gabba Gabba, the Backyardigans and Charlie and Lola enjoying a morning in a tent.

Roller Coasters are daunting. They can be imposing, loud, scary and unpredictable. They require you to let go of your control and to trust in others. They are not for everyone. But, once you are on them, and let your self go, they can be fun, exhilarating, and create memorable experiences.

Time to stop focusing on what can go wrong and enjoy the ride!

STRANGE DISCOVERY

Sometimes we miss happiness by looking too far for things nearby.


-Anonymous
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One of the things you read most about raising a child with Autism is that although many such children have difficulty communicating with words, they often communicate with their actions. For some reason, our Little Man, who has a vocabulary which is clearly beyond his years, does not see those words as having the primary purpose of communicating with others. He uses his words primarily for the purpose of humoring himself. But the words are there. The knowledge and ability of how to use them are there. But, for whatever reason, he chooses other methods of communication first. If he wants you to open the door to the basement, his fist step is usually to grab your hand, walk you over to the door and place your hand on the knob. On good days, that is sometimes associated with a calmly voiced “Downstairs.” On so-so days, it is voiced with really loudly yelled “DOWNSTAIRS!” and on other days – it is accompanied with no words at all.

The other day, I was doing a little cooking and he came over to grab my – possibly salmonella contaminated – cooking hands to lead me to a desired object. Obviously, I did not want him to grab my raw chicken handling hands. But, I was afraid that he would not understand my reaction of drawing my hands back and away from him. So I felt the need to communicate with him somehow. So as I pulled my hands back, I bent forward, leaned toward him and said “use your words.”

I don’t know why I picked that phrase. We never used it with him before. As far as I know, it is not something any of his therapists or teachers use with him. I think I was just channeling something I recall from some crazy parenting book about handing the tantruming that usually accompanies the terrible twos. Whatever the reason, that is what I said.

Then, something strange happened. He looked at me and said “Daddy, I want to go downstairs, please.”

EUREKA!

Just like that, we have opened a new avenue to verbal communication. Since that fateful event about two weeks ago, whenever the Little Man exhibits signs of discomfort, or aggression, or sadness, my wife and I say “use your words.” Right now I think we are over a 75% success rate of having him respond with exactly what it is will make him feel better. In fact, as if often the case with such amazing little breakthroughs, I think this might ultimately help him voice his needs without the need of the “use your words” prompt. In fact, just last night, as I was wrestling with him to try to get his pajamas, I thought he was fussing because he did not want the jammies on. I was wrong. Without prompting, he stopped fighting, looked me right in the eyes and said “Daddy, I want to go poopie on the potty.” And, so he did.

Obviously meaningful verbal communication is only part of our puzzle. But we feel better having the avenue of communication available to us.  Hopefully this mini-breakthrough leads to more!

MERRY CHRISTMAS!

Tidings of Comfort and Joy!
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The Little Man admiring his reflection in a Christmas ball.

WHEREFORE ART THOU SLEEP?

Sometimes I sit up late with my thoughts, reluctant to fall asleep and leave my thoughts alone by themselves. 

~Robert Brault
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Sleep Issues (Part 1)

Where do I start?

Our Autism sleep issues fall in two categories:  1) Falling Asleep; and 2) Staying Asleep.

Topic de jure:  Falling Asleep.

Before Autism was anything more to us than a - it happens to other people but not to us - kind of thing, our Little Man had trouble falling asleep.  I do not really remember when it first started, but it was well before we felt the need to call Early Intervention.  We used to call the little fella "Thunder" since you could usually tell how far he was from sleep by counting the minutes between his giggly, babbly outbursts. 

We tried it all- the cruelly torturous Ferber method; strict bedtime routines; long warm baths; laying next to him, not laying next to him, white noise, silence, long car rides, etc., etc., etc...  We even ventured a try at a melatonin supplement.  Somethings seemed to work for a time, then not so much. No rhyme or reason.

I am now sadly starting to believe that our LM is afraid of the dark, which given his communication impairment, is something he can not tell us.  Why do I think that?  Perhaps it is because of the death grip headlock he puts on my wife or me if we try to roll out of bed  (or as he calls it the "white bed" which is not to be confused with the "blue bed" the "rainbow bed" or the "buzz bed.").

Fortunately or unfortunately for him, he has a father that is somewhat of an insomniac himself.  So I empathize with the fact that when you are not ready to fall asleep - lying alone in the dark sucks!

In any event, I have come to this inescapable conclusion: You do not tell Autism when to sleep.  It tells you when its ready to sleep.   I hereby challenge the SuperNanny to prove me wrong on that!

To think otherwise would cause me to admit that which my wife already knows:  I am insane (in accordance with Einstein's classic definition of insanity).