Out of the Grass

Hope-Filled-Realism

2012-01-27T10:52:00.000-07:00

Emotions get in the way but they don't pay me to start crying...They pay me to put some perspective on the situation - Ted Koppel

A few months back we had yet another IEP meeting at school. As with the previous annual meetings, nothing really set it apart--a person in the meeting reads aloud a whole bunch of evaluations, some figures from testing and evaluations are thrown around, and the successes being experienced are bandied about, giving the impression that Autism was being cured.

As the meeting progresses from one subject to another, I typically will come upon a few tough questions that need asking. I do this, not to be obstinate, but to keep the information regurgitation in perspective.

Ethan's teacher began reading from the IEP, "Ethan is receiving the following grades in his classes: World History - 84.7%, Language Arts - 86.8%, Learning Center - 90%, Physical Education - 97.5%, Earth Science - 76.15%, Geometry - 92%."

Sensing that something was missing with these numbers I asked, "Except for his grade in Earth Science, Ethan is nearly an Honor Roll student, right?"

The room fell silent. Slowly the "um, well, uh the, uh, no, you see..." started.

I continued by saying that the grade suggests he is getting 92%, an "A" in Geometry, but we all knew that "he isn't really taking geometry. He hasn't even learned three number multiplication or division yet, so certainly he isn't really taking geometry. Just like last year in algebra, it wasn't really algebra."

"I'm not sure I know what you're asking," came from the Support Coordinator.

"Looking just at the numbers we see that a 92% is a great grade in Geometry, but it isn't accurate. It is misleading. Isn't he really doing first grade math? Compare that to the fact he is a Sophomore in high school, and now we are getting somewhere; we have some perspective. Can you tell me at what grade level he is at in each of these classes?"

"Oh, yes, I see your point."

We concluded that, as best as possible, grade level indicators would be determined to give perspective to the grades being received.

Next, the meeting moved to discussion of "Transition." That is simply a word to mean his future; not sure why they couldn't just say future, but that is another issue. According to the IEP the OASIS-Interest test indicated that Ethan tested high in "Mechanical and Business" placing him in a career path involving "technical scientific work, operating and maintaining mechanical" equipment.

I sat quietly, waiting for them to finish reading the evaluations before I started in with my questions, but my mind was already racing with thoughts. Had everybody already forgotten he was banished from the Vocational Rehabilitation program due to being classified as a "flight risk?" Obviously nobody told the OASIS test he is a flight risk and requires too many services, thus casting serious doubt on the results. Working with mechanical and scientific equipment first requires some advanced level of comprehension, which we know is lacking, and lastly, though of no less import, it also requires a sense of danger, which he also doesn't have! With that said, how could he possibly work with such equipment?

They continued reading, and there it was; nicely marked for eternity in black and white on an official document, the Pièce de résistance.

"Ethan also scored high in Protective, which goes along with his interest of being a policeman, however, this may be unrealistic for him."

I couldn't help myself, I just had to ask, "Why is it unrealistic for him to be a police officer?"

Again, the room fell silent! Mouths gaped open at me like I was a lunatic. Certainly, I, better then anybody else in the room should know why Ethan can't be a police officer!

I let the silence brew for a few seconds, then continued, "I know why he shouldn't be a police officer - he has no sense of danger, among other things." But then to my real question. "These tests tell us what he is good at, but is there anything that identifies the areas of risk? It said he is high in protective, but yet it is unrealistic, why is it unrealistic? Can you give me a list of reasons why it is? Tests tell us what he is good at, but not good at telling us what he is bad at. It seems to me that if we can identify the areas where he is at risk, that we could formulate some sort of education plan to address those areas, and see if we can resolve them..."

~ ~ ~

I am very much like Ethan when it comes to measuring relativity; numbers and data alone mean nothing to me. Don't give me information with nothing else from which to measure it. Like Michael in the Philippines, when he says he has $3000 Pesos in his pocket for emergencies, at first we think "Holy Cow! Are you crazy you're going to get robbed." Add one small piece of information (the Peso to U.S. Dollar exchange rate) and suddenly we have perspective. He actually has about $60 dollars for an emergency; a much more reasonable, and less risky, amount.

A few weeks ago, some of the answers we sought in the IEP started coming in. They came by way of test results. Though I appreciated the test results, it was missing two things, either of which would have made it worthwhile: the date the test was taken or his current enrolled grade level in school when the test was administered.

The results clearly showed that Ethan reads at the fourth grade level, is not quite at the fifth grade level for spelling, and can write a fourth grade sentence. His "listening and comprehension" however is not quite at the first grade level, having only answered 2 of the 5 questions correctly, he needed to answer 4 of the 5 for passing.

"He tried to answer 4 of the questions, one of them he stated 'I don't know'. While the administrator was reading the story, Ethan picked up the hand sanitizer and asked, 'what are the bubbles?', and then proceeded to make popping noises."

As for math, the test showed him at the "first grade level in the area of math problem solving." He was "able to solve two digit addition and subtraction problems" but had "difficulty in solving problems with fractions, and multiple numbers for multiplication and division."

Obviously, most people don't think the way I do; I'm sure that is a plus for the world. Nevertheless, I am a hope-filled-realist when it comes to Ethan. Give me the facts, don't sugarcoat them. Tell me where we are in relation to where we've been or where we're heading. Now, when I see a 92% in geometry, I can visualize that he is mastering math on the first grade level and will be moving on to the second and third grade level. It is far from perfect for a high school student, but it reveals progress!

By looking at life from an unclouded vantage point, the light of possibility lets me see progress in him, but I am also anchored in the reality of the progress not yet made. It's all a matter of perspective!

Got Ethan?

2012-01-21T10:43:00.000-07:00

On Monday evening I put Ethan to bed. We had read our scriptures, prayed, cuddled for a few minutes, then I tucked him in bed and off to sleep he went. My alarm sounded Tuesday morning at 4 a.m. and off to work I went; little did I know what was about to take place.

Upon arriving at work I immediately began searching for an endangered missing juvenile. The young woman had runaway from The Land of the Midnight Sun and was now being trafficked for unmentionable things in The Valley of the Sun.

We started our search for the young woman, only to get just that close. I got home in time to catch four hours of sleep, then left again bright and early Wednesday morning to begin our search again. Later that night we found her, safe, and not too worse for wear! After interviews and follow up, I got home in time to grab another hour of sleep before being called back out a little after midnight to handle a bureaucratic game I like to call "Victim, Victim, Who Wants the Victim!"

Needless to say, by the time I got home on Thursday, around noon, I was relieved, yet exhausted, frustrated, and dumbfounded by the aloof laziness of the county agency tasked to assist juveniles, the bureaucratic hoops private organizations wanting to help must set on fire and jump through before they can, the ultimate dysfunction of a family when it comes to one of their own, and the wanton indolence generated by Seasonal Associative Disorder (SAD) due to the lack of sunlight on the third-shift in Alaska.

Upon arriving home, my wife, told me that Ethan had been asking about me the past two days; we had not seen each other in 65 hours... I was tired, but wanted to see him as soon as he got home. When his bus arrived, I made sure I was at the door waiting for him.

A huge welcoming hug from Ethan was soon followed by a very fitting sing-a-long reenactment of this little number from Cats Don't Dance.

Obviously, any frustration I had brought home, quickly vanished.

Later that night as we knelt again for family prayer Ethan asked, "Dad, why were you at work a million long times?" My wife asked, "Are you glad dad's home?" He simply responded, "YES!"

As we finished our prayers, and went to bed, I couldn't help but think of those milk commercials from the eighties, with only a slight modification:

Got Ethan?

...he does a body good!

2011 "...let me explain. No, there is too much. Let me sum up..."

2012-01-14T09:52:00.004-07:00

The beginning of the year , marked business as usual around here, except for the fact Michael received his mission call to the Philippines and we began preparation for his departure. Other than that the first six months of the year were the status quo!

Family pictures were taken in preparation for Michael's departure. As you can see, taking pictures is apparently boring. Normal smiles get replaced by exaggerated smiles, and who-knows-whats...

...and other things catch our eyes completely...

Puberty continued to be our nemesis during the year:

That seasonal foray of hormones typically brings with it the expected mood swings, growth spurts, oppositional challenges, and lively conversations. But they say, ‘Anything which affects the normal brain affects the neurologically impaired brain much greater.'

After fifteen entertaining years 'little brother' has surpassed 'big sister' and can now only be called 'younger' brother!

The day of departure arrived and Michael flew off to the Philippines for 700 days!

After twelve years, a great distance had once again separated the seven of us, though this time the solitude of the temple has been replaced by 'old fashioned mail' so we could keep in contact, as this young man...

...became this young man

Though his departure allowed a great reduction in the grocery and gas bill, his absence allowed us to face new challenges.

Out with the old, and in with the new, for most people goes out with a bang. Not around here. We prefer to go out in much different ways. As a matter of fact, we went out in 2010, much like we did in 2011; not with a bang, more like a screech, and a crash, and the sound of shattered glass and crumpling metal!

Having experienced the anxiety of hospitals and surgeries earlier in the year, when this happened mid-December we kept it secret. Though she is his best friend, Ethan was not told or taken to the hospital when this happened. We didn't have the heart to take a picture of her while she was C-Spined on the back board, we waited until she was taken off it before snapping this picture!

I am HAPPY to report that MoKo is fine, and recovering nicely. Our Perfect Fit however, is now a Civic! =`(

Not to be outdone the next day, following the accident, I spent the morning at the same hospital delivery a wonderful 4mm kidney stone. Fortunately, the 'baby' resembled nobody from the family, though the feelings I felt delivering it did remind me of a few... ;) The next morning I discovered it was twins, and gave birth to his much smaller, but no less enjoyable 2mm little brother.

Christmas approached, and we settled in for a nice winter's night. The tree had been put up, decorated, redecorated by Ethan when we weren't looking, and presents were placed gently under the tree, removed, examined, studied, smelled, reexamined, smelled again, listened to, shaken, and gently placed back under the tree five or six times.

While smells of fresh baked goods, and candies filled the house, there were no visions of sugar plums dancing in his head. Those visions were replaced by his own little movie as he lay on the bed for hours 'reading' (actually just looking at each page searching for such words that stood out like Marley, Cratchett, Tiny Tim, and Humbug. He couldn't figure out why he couldn't find Rizzo the Rat or Fozzywig, etc!) Charles Dickens' A Christmas Carol.

And so our year has been. We have had our ups and downs. We have relived old experiences and have been touched by the new, but in retrospect this has been another fine year!

...Not Words But Meanings

2011-11-30T20:40:00.000-07:00

The great philosopher of Walden Pond, Henry David Thoreau, once wrote,

'The language of friendship is not words but meanings.'

That truth is perfectly circumscribed in this letter Ethan recently wrote to his brother in the Philippines.

'Dear Michael are you obeying the rules, ~~and~~ are you being a good Missionary, and are you learning the ~~Langage~~ ~~Lanug~~ ~~Lanugage~~ ~~Langguge~~ Lanugage. Love Ethan

The Road Well Traveled

2011-11-11T07:40:00.000-07:00

Often my wife and I feel as if we are all too regular travelers on the road to nowhere. Scratch that, I shouldn't say nowhere. Often we feel like the road we are on leads to a place known as Wits End.

Wits End, is a very small town, as far as population goes. More often than not the population seems to just be 2. No more, but occasionally less, depending on whether or not one of us is away with other family, work, or church responsibilities when the sudden detour appears on our horizon.

You might have visited this not-so-quaint little place yourself on occasions - especially if you have teenagers. A single lane road, riddled with washouts and potholes is the only point of entry to Wits End, and its dilapidated ghostlike resemblance of a town. It is nestled precariously on a cliff overlooking a jagged rocky coastline of eddies, riptides, and whirlpools. The damp air, which is whipped to a frenzy by the blustering coastal winds, can leave one soaked, and chilled to the bone. The briny air, thick with salt, masks the burning sensation in your the eyes caused by myriads of tears.

In brief moments of optimism one wonders if 'Frequent Flyer Miles' or 'Redeemable Points' are accumulated each time you are whisked off to Wits End for an unexpected and all too sudden visit. Such thoughts are dashed when you discover that the only item available for redemption with the points is a much-too-small box of Calgon, with never enough capacity to 'take' you 'away!'

Some days the detours that send us on our way are anticipated, other days they strike suddenly without warning. Take for instance our trip to the Trunk-or-Treat at Church. We knew going in that the risk of a meltdown was quite high, and that an overload and meltdown were highly probable. What we didn't anticipate was that the meltdown took only seconds to occur after our arrival, rather than ten or fifteen minutes. Those trips to Wits End, though no less demanding, pass more quickly.

Then there are those days when the detour appears out of nowhere on a sudden. Screeching breaks, and frantic turns of the wheel cannot keep us from being forced onto the off ramp to arrive all too suddenly at the end of the road. One such detour appeared out of the blue just last week. Without going into too much detail lets just say in ~~today's~~ any climate saying such things to a Teacher's Aide like, 'I'm going to kill her with a gun and a pocket knife and set her on fire,' will bring your trip to a sudden and concise exit.

After being called down to the office last Friday to meet the Vice Principal, my wife tried her best to give some background on Ethan and life in our home. As they spoke it became obviously clear to the others that communication for him is mostly the regurgitation of movie lines and quotes - some of the time the lines fit adorably well into context, such as the time he was taking a test and quoted Daddy Daycare, 'You're killing me, you're really killing me.' Other times the words coming out of his mouth are abstract and whirled together from a variety of movies so much so that it is impossible to know what he is trying to say.

As the Principle spoke with my wife about Ethan's actions, my wife asked Ethan if he understood that what he did was wrong. All she got was the mish-mashed conglomeration of Matilda lines, and quotes from two other movies he hasn't seen in years. Then it happened. There, in the Principle's office my wife came to a screeching halt smack-dab in the heart of Wits End!!! Other struggles from the week then appeared over the horizon, each clambering for attention, and blockading the only road in or out of town.

Over time we have learned one valuable lesson: Wits End is a mirage! But, knowing it is a mirage doesn't mean that life is easy. We still get caught by surprise, we still get overwhelmed, and we still feel an occasional sense of distress and helplessness when the detour arrives and our journey takes us to that vacant lot of despair. But if we are patient, remember to breath (including lots of deep breaths) and trust in the Lord, then the wind changes, the fog lifts, and Wits End fades away in the light of hope!

Such was the case on Sunday.

We were still wading through the events of Friday, and feelings were a little tender. It was Fast Sunday at Church, which means the meeting is for members to share a heartfelt testimony. I was conducting the meeting, so I had the opportunity to share my feelings first then turn the meeting over to the members. The events of Friday were so close to the surface that I had in fact spoken briefly about what had taken place with Ethan and expressed my gratitude for those small fleeting moments when we get glimpses into his mind and get to hear him, pure, undiluted, without scripted words.

I sat down and a handful of members came forward and shared their testimonies. Then it happened. Ethan stood up and came to the stand. I looked over to my wife who was weeping. I made eye contact with Morgan who shot me a text: 'Ethan said he wants to bear his testimony!'

My initial thought was this was trouble with a capital 'T'. I showed the text to the Bishop, to prep him - just in case. There was no telling what Ethan was going to say; it could be anything, and I mean anything!

It was his turn. He stood, smiled at me, and walked to the podium. I asked if he needed help. He shook his head no. He reached up, adjusted the microphone, grabbed the edges of the podium with both hands and cleared his throat.

'I want to bear my testimony, I know the Church is true. I want to be a good boy and not say shut up. In the name of Jesus Christ, Amen!'

He turned and walked back to his seat. Each step bringing with it a gust of wind and a ray of light until Wits End disappeared, vanishing as quickly as it had appeared.

An email to the Philippines

2011-10-21T11:09:00.000-07:00

Last week Ethan sat down with his mom at the computer to type an email to Michael. Regardless of the promptings from my wife, Ethan ignored her encouragements to ask questions, or write about things like school, church, etc. Here is what he wrote on his own. Any guess as to what's on his mind?

dear Michael this is your brother Ethan.
I want you to come back home after your Mission is finished.
please Michael don't go.
we need you back home because you're a nice big brother.
I'm getting strong like you,and becoming The Strongest Man In The World.
you heard our Dad because I'm just a teenager like you.
please come home Michael so we can do some cool things together.
Love Ethan.

Seasonal Changes . . .

2011-10-10T14:04:00.001-07:00

Life around this house has been anything but standard recently. Not only has our second year of high school brought with it new challenges and a new curriculum, but also the onslaught of puberty has added a new dimension to our old-fashioned challenges.

That seasonal foray of hormones typically brings with it the expected mood swings, growth spurts, oppositional challenges, and lively conversations. But they say, ‘Anything which affects the normal brain affects the neurologically impaired brain much greater.’

I think the title of a recent blog post by Debi Taylor says it all: Autism + Puberty = Oh, Crap!

Debi further wrote,

…I thought I had it in the bag. Easy – whiny, emotional, easily irritated, overreacting to things – then a smooth ride until the following month. Of course boys are different, but when you add precocious puberty with a splash of Autism you get an interesting cocktail.

So, we have begun experiencing several of the issues discussed in Debi’s blog. Rather then go into detail about what exactly is happening around here I can sum it up by telling you that deep-pressure-hug-therapy sessions ~~can~~ start with head-butts – no fear, I’ve made a note to myself to defend against those from now on!

The dichotomy that fascinates me, and keeps me hopeful, is that hidden somewhere in that fifteen-year-old hormone raging adolescent body is the innocent six-year-old-like mind of an autistic boy. Though we face new challenges now in both coping and dealing with the issues puberty brings, we still have the blessing of experiencing those innocent moments when the heavens open and we chance glimpses into his innocent mind! And for those precious moments I’ll take all the head-butts offered! Here are just a few recent Ethanisms…

While speaking to his mom, Ethan expressed concern that Michael was going to move out of the house.

‘Mom, I don’t want Michael to be a man with a mustache, I want him to be a boy at home.’

Here’s my favorite.

‘Mom, Did you know my spirit was in heaven?’
‘Yes it was,’ my wife responded.
‘Yeah, just like in the Pagemaster!’

The Price We Pay For Happiness...

2011-09-18T21:21:00.015-07:00

The telephone rang, breaking the monotonous sound of the steamer, as my wife scrubbed the kitchen floor. She picked up the receiver and politely replied, 'Hello.'

'This is Visa, we are calling regarding some questionable activity on your account. We see that you have several closely timed iTunes purchases occurring, that seemed quite large, and rather questionable. Have you recently made any purchases on iTunes?'

'I don't think so...' my wife answered, thinking of any recent receipts that we may have received in an email.

The voice in the phone proceeded, '...two purchases were authorized, and a third was declined because it appeared suspicious.'

Just then Emma was heard shouting from upstairs, 'Mom, Ethan's downloading a bunch of movies on iTunes!'

'Oh, my gosh,' my wife shouted as she ran up the stairs with phone in hand. Arriving at the computer there was Ethan squatting on the chair, calm as he could be, intently reading the images on the screen.

'Mom, I bought a movie on iTunes!' he said proudly.

My wife returned to the voice on the phone and said, 'I'm sorry, my son apparently got on the computer and was downloading them. He has autism, I don't now how he figured this out. Ugh! I'm so sorry.'

'No problem, we recognized it as suspicious and just wanted to confirm. Again we declined payment on the last purchase. You may want to call Apple and explain this and see what they can do for you.'

'Thank you, Oh my gosh, again, I'm so sorry.' She then hung up and called me. I wasn't able to talk, but quickly understood her brief explanation. 'I'll take care of it when I get home,' I said and we quickly hung up.

When I arrived home I walked upstairs to the computer and checked the iTunes history. There they were the three purchases. Two showed paid in full the last showed declined. I checked on the computer and saw that we had indeed downloaded those movies so I reauthorized the purchase.

I walked in to where Ethan was and asked, 'Hey buddy, what happened?'

'Dad, did you see it?' he said proudly. He stood up, his feet spread apart, placed his hands on his hips then broke out in a giant grim, said 'Hey Dad!' and raised his eyebrows up and down in unison. It looked something like this . . .

This was his famous 'I'm proud of myself' pose! After striking the pose, his young-man-voice crackled and screeched, 'I bought movies on iTunes!'

'Yes, you did,' as I smiled and simply walked away.

What else could I say? Anything would have dashed his pride, and besides that it wasn't like he hurt somebody. Besides we can change the password, and make sure this doesn't happen again, but I just couldn't harm this proud moment in his life. He, on his own, had bought movies - and not just any movies, good movies, including some classics.

I didn't have the heart to be mad.

Some days happiness seems expensive, like when he cut the tips off all the cell phone chargers, other times it requires deep pressure hug therapy, or a few yoga poses. Then there are those days it is simply free!

So, what was the price we paid for happiness today?

$122.62 (tax included)

The Worth of a Soul

2011-09-05T22:00:00.000-07:00

The absence of normal 'frees us' (emphasis added - read the entire essay here) by Ian Brown

Without question the most common reaction people have, when they find out I have a seriously disabled son, is “I don’t know how you do it.”

It’s an interesting reaction, because in many ways, the act of physically caring for a boy like Walker is the easy part. Walker is 14, looks about 10, and has the mental function of someone who is about two or three. It looks like he always will. He can’t speak, and because he can’t speak, I don’t know how well he sees or hears, or why he hits his head again and again if I let him, or where he’s in pain. He can’t swallow, so he has to be fed with a tube, and he can’t figure out the routine of going to the bathroom, so he has to wear a diaper. But those are easy problems to fix, albeit time consuming and sometimes a little dreary: a diaper is a diaper, and sometimes it is full and needs to be changed.

What I found more upsetting, practically from the day Walker was born, was a bigger and more unknowable question: did he have an inner life? Did he have any intentions, and therefore did his life have any purpose, any meaning?

That’s a hard question for any of us to answer, but it’s especially hard to answer for a boy who cannot speak or reason, and whose care consumes countless resources and many, many hours of human effort. Because I did that calculation too, when Walkie was an infant: if he lives at 10 per cent of human capacity, and if the care of him reduces my wife and I to 30 per cent of our human capacity, and if my daughter Hayley is set back 30 per cent, because of him—well, add those up, and you have two and a half lives spent to sustain the so-called life of one broken boy. Is that worth it?

. . . it has taken me 15 years to see my way to this conclusion—15 years to see through the exhausting demands of day-to-day care of a boy like Walker, to a redeeming value of his life. I can’t help but wonder why it took so long, or why I had to conduct the search on my own. I also wonder why the medical profession, and the care profession in general, don’t help parents toward these insights—as the church might have in the past.

. . . The value of the human spirit, even at its subtlest and most obscure, is a question the whole world always needs to question, and answer.

I do not fully comprehend all that Ian's life entails, but I, in my corner of the world, understand when he speaks of 'dreary' times. Though we are potty trained, and do not require diapers, we do have our occasional problems. Showering, even at this age, requires assistance. Meltdowns, which occur less frequently with age are more physically demanding due to his size, and take more of a toll. Hormones, anxieties, compulsions, and obsessions color our daily world - sometimes to tears.

I appreciate Ian's candidness, and my heart breaks and rejoices for him. It breaks when I consider the fact that for fifteen years he struggled to answer a question that 'the church might have' answered in the past. His are questions I never had to ask, because of my understanding of the Gospel, I always knew there was a purpose to life, for ALL of us. I rejoiced in knowing that he has found that the answer to the questions are YES, it is worth it, Walker does have an 'inner life' as he says, and that there is purpose in all of this.

My words fall short in trying to describe how I know, but trust me, there is meaning! I can only give you glimpses into my world, just as we only have glimpses into Ethan's. But we take those glimpses and run with them. We cherish them for all that they reveal, even if they reveal more then we can adequately describe in words.

This last week Ethan was on the computer watching a video. The video was a cartoon depicting the visit of Jesus Christ to the people on the American continent as detailed in the Book of Mormon. On a sudden, Ethan paused the video on this image of Jesus.

He got up, walked half-way down the stairs and leaned over the railing so he could see the painting we have hanging over the piano. He stood there staring at this picture for several minutes.

Evie noticed, and stood silently watching. As the seconds ticked by he just stared at the painting, then said, 'Huh,' and turned and walked back upstairs. Evie followed, and discovered the stilled image of Jesus on the computer screen.

We may never know what was going through his head as he stared at the two images of Jesus. But as I contemplate that incident, Ian's questions, and our answers to them, I am reminded of the words from a blessing Ethan received last winter:

. . . As you think about the Savior you will be given ideas on how you can follow him . . . your spirit will continue to progress and to grow towards its potential.

Dreams

2011-09-03T22:52:00.000-07:00

There have only been a few times when Ethan has allowed us to specifically know what is happening in his little brain. Most of the time we are left guessing when his reply to our question is, 'I don't know.'

So, for the most part, we are left making assumptions based on what he is doing - more on that later.

The other day Ethan announced 'Mom, I had a funny dream.' He added, 'I just helped Nephi kick Laban's butt.'

(If you're not familiar with the story it comes from the Book of Mormon: Nephi, a righteous man, was seeking to obtain religious records - scriptures - offering Laban silver and gold for the records. Laban, a wicked man, sought to kill him for the riches and to retain the records for himself. Finding Laban in a drunken state Nephi was commanded by God to slay Laban so that Nephi's people would not dwindle in unbelief because they did not have the written word of God. Obedient, like young David when he slew Goliath, Nephi slew Laban, cutting off his head, using Laban's own sword.)

This was a rare glimpse into Ethan's mind; a chance encounter to know what happens in his head. We jumped at this opportunity, and asked more questions.

'What happened?' we asked.

'I cut off Laban's head with a pocket knife, like this . . .'

He then proceeded to reenact taking the pocket knife, holding it above his head, then swinging it down in one full sweep to complete the act.

'Wow, really? A pocket knife?'

That didn't make sense and we couldn't figure out what movie that could be from, though we know that pocket knives are like swords in his mind.

'Mom, I did this . . .'

He then reenacted the scene taking an axe, holding it above his head, then swinging it down.

'An axe? What movie is that from?' I asked.

'Chicken Run.'

'Really, I don't remember that part of the story.'

It did make sense, since in Chicken Run the evil women running the concentration-coop would take chickens and cut their heads off before she turned them into pot pies.

'Mom, like this . . .'

He then reenacted taking a sword, and poking Laban in the stomach.

'Put on this mask,' he continued, 'You will wear it till you love it!' He held his imaginary sword in the air, and said, 'All for one, and one for all!'

The Man in the Iron Mask, that's a switch, but it makes sense. That story is the only one where a sword is actually used.

His story telling went on for about five minutes, rehearsing the scene over and over again. Going from pocket knife, to axe, to sword and back again.

This was a fascinating glimpse into the mind of autism. Remember this Temple Grandin thought from a previous post

Being autistic, I don't naturally assimilate information that most people take for granted. Instead, I store information in my head as if it were on a CD-ROM disc. When I recall something I have learned, I replay the video in my imagination. The videos in my memory are always specific . . . each case is also part of my visual memory. I can run these images over and over. . . Unlike those of most people, my thoughts move from video like, specific images to generalization and concepts.

Autistics have problems learning things that cannot be thought about in pictures. The easiest words for an autistic child to learn are nouns, because they directly relate to pictures. . . Spatial words such as "over" and "under" had no meaning for me until I had a visual image to fix them in my memory. Even now, when I hear the word "under" by itself, I automatically picture myself getting under the cafeteria tables at school during an air-raid drill, a common occurrence on the East Coast during the early fifties. The first memory that any single word triggers is almost always a childhood memory. I can remember the teacher telling us to be quiet and walking single-file into the cafeteria, where six or eight children huddled under each table. If I continue on the same train of thought, more and more associative memories of elementary school emerge. I can remember the teacher scolding me after I hit Alfred for putting dirt on my shoe. All of these memories play like videotapes in the VCR in my imagination. If I allow my mind to keep associating, it will wander a million miles away from the word "under," to submarines under the Antarctic and the Beatles song "Yellow Submarine" . . .

I also visualize verbs. The word "jumping" triggers a memory of jumping hurdles at the mock Olympics held at my elementary school. Adverbs often trigger inappropriate images -- "quickly" reminds me of Nestle’s Quik -- unless they are paired with a verb, which modifies my visual image. For example, "he ran quickly" triggers an animated image of Dick from the first-grade reading book running fast, and "he walked slowly" slows the image down. As a child, I left out words such as "is," "the," and "it," because they had no meaning by themselves. Similarly, words like "of," and "an" made no sense.

When I read, I translate written words into color movies or I simply store a photo of the written page to be read later. When I retrieve the material, I see a photocopy of the page in my imagination. I can then read it like a Teleprompter. . . When I am unable to convert text to pictures, it is usually because the text has no concrete meaning.

Certainly, this isn't the sweetest story he could have engrained in his mind, but we'll take what we can get. The story is one of pure obedience and faith; a story of good versus evil. Besides, he always chooses to be on Nephi's side, the side of good!

Anxiety (Get Nervous)

2011-09-02T08:49:00.002-07:00

Last Monday right after we finished Family Home Evening the power went out. Having experienced blackouts before, this was no big deal, right? This was a piece of cake . . .

Holy smoke!

You would have thought the world had come to an end!

Wait, was this the answer to prayer? Was our puberty trial over!?! No such luck, just a blown transformer!

In less time then it took to wind up an old fashioned alarm clock, Ethan wound him self up with anxiety over the fact the power was out. Which was both fascinating and exhausting.

For the next forty-five minutes he,

1) Started pacing the floor immediately and began asking repetitively, 'Dad, what happened to the lights? Where are the lights? . . . Dad, the lights are off, why are they off?'

2) Realized he needed a flash light, darted off down the dark hall to his bedroom to retrieve one of a dozen flashlights he owns. (yeah, he's obsessive with flashlights, having both flashlights, and headlights)

3) Returned to pacing the floor with flashlight in hand, 'Dad, the lights are off, why are they off? . . .'

4) As he paced, he checked each room, looked out each window, paced some more, and asked once again, 'Dad, what happened to the lights? Where are the lights? . . .'

Exhausting!

But what was fascinating, was that he is not afraid of the dark. He's actually not afraid of anything, let alone the dark! So why the anxiety?

His favorite game is to play Hide and Seek in the house. This is done by waiting until night time, turning off all the lights in the house (including covering anything that emits lights, like alarm clocks, DVD players, modems, etc. with papers, books, etc). One person counts and then the rest of us hide somewhere in the dark house.

When Ethan is the finder, he always carries his flashlight (the little cheater - we have to tell him to turn it off regularly, to which he replies, 'But, I can't see. . .') and wanders the house looking for us. As he does we can hear him say, in this creepy Chitty-Chitty-Bang-Bang-child-napper-voice, 'You can't hide from me . . . I'm going to find you . . .'

If we let him, he would want to play this game everyday for hours on end. Which baffles me. Why then the anxiety over the power being out. What makes this different then turning them all off on our own. Is that it, is it just that simple? Is the anxiety caused because somebody else turned the lights off, and we can't turn them on until they say we can? Is the anxiety a result of not having control over the lights? I wonder . . .

After an hour, we were able to convince him that it was late, nothing bad was going to happen and it was time for bed. He still has difficulty sleeping in his own room, so he crawled up next to me, bundled up under the covers, and closed his eyes. Within seconds he fell asleep, and drifted into his dreams, but that is another story . . .

Time To Change

2011-08-29T20:19:00.000-07:00

TOP 5 ways you can tell you are getting old?

You are listening to the 'Oldies' radio station while driving to work and they play a song from your high school days! - Talk about a shocker, they played Depeche Mode's People are People on Kool FM 94.5!!
You find yourself reading the obituaries to see if you are listed, feeling it possible but thinking they just hadn't bothered to mention it to you earlier...
You learn that people you work with were not even born yet when you were hired!
The Pharmacist knows you by sight, and already has your blood pressure, and cholesterol prescriptions on the counter as you approach to pick them up!
You remember watching this episode when it originally aired on TV (after the television had a few minutes to warm up of course)

I've never been one to feel overwhelmed by the onset of the Golden Years of life. I didn't blink an eye when the Thirty-somethings struck, and cared less when the Forty-somethings neared the half way point... If you've followed my blog from its inception you might remember when I reminisced about a few of my friends getting older. At the time a few of them were showing their age quite noticeably. I on the other hand didn't think I was showing my age in the least. I still have a few years left as an Quadragenarian, not quite reaching the prime of 'Middle Adulthood.'

However, I must confess, I'm still in need of reading glasses, and my normal eyesight has fallen to 20/20, which really bothers me as I can't see as clearly as I used to. My hair has started to gray a little on the sides - you know, at the temples so I have that distinguished look - and my beard is starting to look more like Santa's then it used to - these are symptoms of what they call 'Universal Aging'

But there is one factor that seems to be aging me more then anything. This 'proximal aging' is due in large part to one event and one event in particular that has arrive recently in our home.

PUBERTY!

No, not me! A certain somebody has reached that milestone in his life.

I find it ironic that the word 'milestone' is so similar to 'millstone' (as in '...around my neck'), which is exactly what it feels like trying to navigate this season of life with a special needs child!

It didn't help, during his annual checkup, when the staff at the Melmed Center gently reminded us that though emotionally, intellectually, and academically, he is far behind his age group, hormonally he was absolutely perfect!

For the most part puberty isn't so bad to cope with. I've lived through it before with the emotional drama that young women encounter, and the brain-dead 'What? What?' that young men go through. But this is different. Yes, we experience the typical issues, like his voice starting to change. There is nothing cuter then to listen to his formally monotone robotic-like voice as it squeaks, squeals, and cracks as he talks. I've already mentioned the occasional shave I have to give him. But there are a few rough sections of road when the puberty construction zone strikes on the Acronym Highway!

Years ago, I hurt my back and to help find some relief we bought a body pillow. Sleeping on my side, I could rest a leg on the pillow, and provide support, and relief until my back loosened up and I felt better. When we purchased the pillow all they had was this hideously ugly purple fuzzy body pillow. No problem, I thought. It wasn't a big deal, when all was said and done, and my back was better we could tuck that thing away in the closet.

Yeah, big problem! It won't fit in our closet. The only place we could find for it was to tuck it behind our headboard. It was out of sight, out of the way, and out of mind.

Except that a certain little somebody - actually he is not little anymore, he is 5'6", has nearly surpassed his mother in height, and like those Labrador Retriever puppies with the giant over-sized paws, has lots more where that comes from since he has very large feet and hands to grow into still! - discovered the pillow and loves to cuddle on it...

...NAKED!

Yeah, this clearly must have something to do with the sensory integration dysfunction that he experiences; at least that's what I tell myself!

Many are the times we have walked into the bedroom to find him naked, laying under the pillow.

We ask, 'What are you doing?' or 'Are you naked?'

He quickly replies, in that squeaky, crackly voice, "Oh, nothing! Nothing!' or 'Sorry! Sorry!' as he quickly situates his clothes to where they should be, and moves out from under the pillow.

We have even experienced him sitting naked at the computer with the pillow tucked between his legs, his arms pulling it tightly to his chest, while he surfs the internet for pictures of his favorite cartoon characters.

Another problem with puberty is that he sweats! He sweats like Shaq standing at the free throw line! Again this is accentuated by his sensory issues, he loves having his socks on all the time. We developed a routine recently where he takes his shoes off when he gets home and puts on slippers. He hates being without clothing - unless the purple pillow is nearby, or he doesn't have his medication - and loves wearing long sleeves, even in the summer. We try to have him wear shorts, and try to sleep without a shirt on, but eventually his compulsion gets the best of him and on the shirt goes, and he buries himself under his blankets to drift off to sleep in a pool of sweat, the fresh aroma of locker room wafting in the air.

With Michael being gone, he hates sleeping in his own bed, so he climbs into our bed, on my side, and bundles himself up under every blanket available. Normally this would not be a problem except for he is now sweating like a mad man underneath those layers!

The other night I pulled back the blankets to 'carry him' off to bed (which by the way means I have him stand up and I walk him back to his bed as he weighs over 100 pounds) and the sheets were all wet. You would have thought he had just got out of the pool and jumped into bed in his wet swim trunks!!!!

I won't say this isn't fair, but come on! Isn't there some kind of medicine they can prescribe to help deal with this, some kind of treatment, something? I don't care if it is a shot, a pill, or if they have to medically induce a coma until he's grown out of this, there must being something they can do.

I thought medicine was based on compassion!!

I am ready and willing to be compassionate. I'll even let my wife go first. She gets the coma for the winter and spring months, I'll go into the coma for summer and fall, at least until this naked sweaty construction zone clears up... =}

I'm Here

2011-08-23T16:07:00.000-07:00

'...An original story...conveys the loneliness that a child on the autism spectrum often experiences, and the life-changing impact each of us can have when we reach out and embrace them.' Story and art by Peter H. Reynolds. Produced by FableVision for SAARC.

The incidence of Autism Spectrum Disorders (ASD) has exploded in the past decade with the latest studies revealing that approximately 1 in 110 children are affected by an ASD...including 1 in 70 boys...Autism [has] the undesired ranking as the most prevalent childhood developmental disorder in the U.S.

There is no known cause, and worse yet, no cure.

To the world you may be one person, but to one person you may be the world ~ Heather Darling-Cortes

Ruby Jane Taylor - a guest post

2011-08-16T22:00:00.000-07:00

Ruby Jane Taylor was diagnosed with liver failure in March of 2011 at the age of three months. While awaiting a donor liver and working with some of the best doctors in the country at the UCLA Medical Center, Ruby passed away during the evening of August 11 - she was seven months old.

The following guest post was written and posted by my dear cousin, a close friend of Ruby's mother. The love, lessons and faith expressed in this post are universally applicable, so with permission, I present them here.

Church buildings, in the LDS culture, can be used for many different purposes. They can be used for men's basketball, mutual activities, scout activities, Relief Society events, and on every Sunday church services. They are used to issue temple recommends, boy scout advancements, Young Women medallions, Eagle Court of Honors, Primary talks and the Sacrament. But today, today my church building located on 30522 Via Con Dios in Rancho Santa Margarita became something I never thought a church building could...it became a part of Heaven.

There was not a soul that walked through those glass double doors today that could have expected the rush of emotion and Spirit that were ever present those few hours we spent together celebrating Ruby's life.

We were greeted with a large poster of Ruby's beautiful little smile. The one that dots Facebook and Blog pages across the world and across our hearts (the one pictured above). On the table were beautiful pictures of the Taylor family in "better times" along with some of Ruby's personal affects: the little Teddy Bear from her Hospital room, her toys preciously encased in a glass vase, some of her adorable knit hats, blankets, a wreath from her room made by her mother and comforting scriptures beautifully presented in different frames. A little glimpse into little Ruby's family.

There was another table with a guest sign-in book, the programs and photographs of Ruby for us all to take home. Along side this table was a beautiful bare heather gray tree in a frame, without its leaves, that said "Ruby Jane Taylor: Thank you for touching our lives". It was here that we could press our finger into an array of green inkpads and "touch" our fingerprints onto the tree to form the leaves. Very moving to see the barren tree become full of "life" with each guest that arrived. An amazing piece of art work the Taylors will, no doubt, cherish.

Most church building walls are brown burlap or painted white. Our building however, is a soft rose pink color...very fitting for this sweet girls celebration of life. Everyone was asked to wear either yellow or pink in honor of her. As her tiny casket was brought in by her uncles and laid on a tiny table in front of the podium amongst beautiful arrays of white, pink and green flower, you could feel the spirit so strongly. Ani and Matt, along with their families walked into the chapel and the meeting commenced. The spirit was instantly felt as prayers, musical numbers and words spoken were shared. Her cousins and a few of our wards Primary Children sang "I am like a Star shining Brightly", Ani's sister played a beautiful violin piece accompanied by piano of "I know that my Redeemer lives" and the lyrics to "I am a Child of God" were sung by all there.

Ani, Ruby's mother and my sweet friend, surprised us all by standing at the pulpit. She asked that anyone touched by Ruby "please stand". As the entire congregation stood in unison Ani held her chest and wept. She then thanked everyone for the love and support and bore her testimony of eternal families and the love she felt for her daughter. She asked us all "not to forget her sweet Ruby" and promised to be the "best person she could be, while on earth, so she could be with Ruby again someday".

Ani's brother, Mike, gave a beautiful Eulogy of Ruby's short mission here on earth, about gaining a physical body, her struggles and her fight. He spoke of her mother and her father and of her sister's eternal love for her and how they will return to her one day but for now "she will be in the arms of our Heavenly Father, free from pain." He talked about how God waited to send her to earth at this time, to these parents, for this purpose. He shared tender experiences of her smiling to her sister, mother and how she would often stroke her father's beard or cheek. He noted that she was holding his finger when she passed from this life and how eternally grateful he was for her, for his sister and the eternal bond he could feel being there with them that special night. He shared with us some excerpts from letters and notes they'd received from across the globe: Hong Kong, Australia, many parts of Europe, and almost every state in the country. They expressed sentiments and how Ruby's 7 months of life were missionary moments or drawing people back to prayer, to Christ and to resolving to be better mothers and fathers. How she touched the lives of SO many.

A family friend gave a perfect talk about the Plan of Salvation. On why this day is a celebration of life and not the end of a sweet little baby. How Ruby was truly an angel on Earth and is now an angel watching over her family until they can return and be with her. He spoke about the incredible family she was blessed to be apart of and echo'd their testimonies that Christ lives, He loves us and how there is a divine plan for us all. Ruby's small mission in life was finished but that worldwide she touched the hearts of many...and for good!

We concluded by singing "I am a Child of God" with the 3rd verse altered a tad. I had to share that sweet verse:

I am a Child of God,
My days on earth were few
But Heavenly Father placed me there
To spend some time with you
He'll lead you, guide you, walk beside you
Help you so you'll see
I'm in God's arms (and) loving you
Till you are HOME with me

Ruby is a true miracle. There were MANY in attendance today that never had the opportunity to meet her or see her beautiful smile in person but in spirit, she touched them. She's changed them, made them better and she has done more in her 7 months of life than I could my entire life. I love her for bringing me closer to my Heavenly Father, for strengthening my testimony of the Plan of Salvation and for the joy she brought to those around her even during her struggle here on Earth.

Thank you, sweet Ruby Jane, we will NEVER forget you!

If you are interested in learning more about our Savior, the Plan of Salvation and Eternal Families please visit: Our Eternal Life

E=MC2

2011-08-14T08:08:00.000-07:00

The theory of relativity showed us that time and space are intertwined. To which our smarty-pants body might well reply: Tell me something I didn’t already know, Einstein.

Researchers at the University of Aberdeen found that when people were asked to engage in a bit of mental time travel, and to recall past events or imagine future ones, participants’ bodies subliminally acted out the metaphors embedded in how we commonly conceptualized the flow of time.

As they thought about years gone by, participants leaned slightly backward, while in fantasizing about the future, they listed to the fore. The deviations were not exactly Tower of Pisa leanings, amounting to some two or three millimeters’ shift one way or the other. Nevertheless, the directionality was clear and consistent.

“When we talk about time, we often use spatial metaphors like ‘I’m looking forward to seeing you’ or ‘I’m reflecting back on the past,’...we...take an abstract concept such as time and show that it...manifested in body movements.”

Over the past month, we have seen little improvement in Ethan being able to comprehend, or adapt to Michael being gone. Though there was turmoil occasionally when they were together, clearly Ethan is incomplete without Michael. That incompleteness equates to a lack of peace, and that results in anxiety. Since Michael left, Ethan has hated sleeping in his own room, or even in his own bed for that matter, choosing ours over his - but that is a topic for another blog all by its self.

Initially we tried explaining how he will be 17 years old when Michael comes home, thinking that will give him something to look forward to. All that did was produce a simple groan.

My wife tried a different approach the other day, and described what took place in a letter to Michael:

At breakfast this morning, I had Ethan and Emma write notes to you. Ethan sat there for a minute and asked how many days until you get home. When I said about 700, his eyes got big, and let out a kind of anxiety-like groan I have yet to hear before. As you remember, during the school year, he asks how many days of school left each week and then in his head he does whatever he has to do to cope through the rest of the week. He loves Fridays at school because that is the last day of the week, obviously, he knows that he can do one last day of school that week and be okay. At the end of the school year last year, when he was on burn out, when I would say only 36 or whatever days of school left, and he would freak out, I would say, I can find a school that can take you for a hundred more days, it freaked him out. So this morning when I said 700, it sent him into overdrive . . . like his brain can't understand that amount of time, knowing that only 5 days can be a long time to him! 700 seems unimaginable to him.

My wife said Ethan sat at the table for the longest time, his brain trying unsuccessfully to grasp 700 days. Finally, after a few minutes, he said,

'We are all spreaded out - the six of us!'

For him, the abstract thought of time misses the mark. It doesn't compute, at least not like it does for you and I.

“How we process information is related not just to our brains but to our entire body...We use every system available to us to come to a conclusion [to] make sense of what’s going on.”

For Ethan, it appears, time is comparable to a physical distance. If something is nearby in proximity, then time is short. If it is far away, say over 40 days, it is far away. If it is 'spreaded out' by years, or hundreds of days, it is equal to an eternity in distance from him, and that is overwhelming to him. For now, Ethan's happiness {E} is based on his relationship with Michael {M} and is affected by the length of time he is away from him {C}, which happens to be two years {2}.

E=MC2

When I got home from work my wife shared the events from that morning with me. That night, Ethan said the family prayer. It was a modification of the standard prayer he says every day. The first modification depends on the day, or the time of day and whether he says, 'Bless us at...'

a) '...school,'

b) '...home,'

c) '...sweet dreams,' or

d) '...Uuuuuuuuughhhh! Church.'

He then concludes with, 'bless Michael that he'll make good choices on his mission, and that he'll be safe...' But then he paused. I looked out of the corner of my eye and caught him as he leaned back, his face tightening with anxiety. He sat there for just a second and then said, '...in 700 days,' followed by a whisper of a groan.

At breakfast the other day he again asked my wife when Michael will be home. Going back to her earlier method, which seemed to inflict less frustration, she said, 'he will come home when you are 17 years old.' Ethan sat there quietly for 5 or 6 seconds, and then asked,

'Then we will always be together?'

Depending on our relationship to the subject, each of us sees time as either immaterial or as everything. 'When you are courting a nice girl,' Einstein said, 'an hour seems like a second. When you sit on a red-hot cinder a second seems like an hour."

Taking a page from Einstein, relatively speaking, this might be a long two years around this place, but after that we have all eternity together...

On The Lam...

2011-08-13T01:22:00.001-07:00

It's official, we have reached an historic pinnacle for Ethan in high school. Last year during an IEP meeting it was discussed and concluded that it was time to begin transitioning from academics to a more vocational oriented education for Ethan. With that in mind we've been anticipating the meeting we finally had last week. That meeting was designed to coordinate with Youth Transition Program faculty and complete the necessary paperwork to enroll Ethan in Vocational Rehabilitation...

That's not completely true. They actually called it YTP and said we were there to discuss Ethan's entrance into the VR program, though they occasionally called it 'Vo Rehab' if they were really daring. They described it as being separate, though recognized by the DDD, a division of DES, and may be included in services provided through his ISP, but did not have anything to do directly with his IEP. Entrance into YTP for VR did require an evaluation such as when he enrolled in ESY.

Apparently it is too time consuming to say entire words when dealing with special needs program - the only thing worse then acronyms are labels.

Some days I feel like Quarterback Peyton Manning calling an audible at the line of scrimmage:

3J X Jagger Zebra right...hut, hut, Bingo, Bingo, Texas 42, hut, hike!

...back at the meeting we discussed the possibilities of the class, the student makeup and the dual teachers. I asked questions about what types of vocational skills they would be learning. I suggested nothing involving knives, as all knives, in fact, all things sharp are considered swords. One person chimed in that the Butcher (meat dept.) class should be excluded from the potentials, and I added we should exclude anything that involved heavy equipment or machinery, oh, and matches!

As the meeting was concluded we were left with the wink and the nod assurance that nothing should preclude Ethan from qualifying for the class. Everything looked good; they have been doing this for several years, and though they couldn't say for sure, it was pretty clear to them...

Perfect, I thought, his school year is scheduled, now we just needed to face another year of high school homework.

Not so fast.

Today we got a call that Ethan was denied entrance into the class. The person on the other end of the line went on to explain that based on his history, Ethan did not qualify for the class as he required too much attention, and additional services - you can substitute the word Aides for services. To top it all off she said Ethan was considered 'a flight risk!'

flight risk /'flIt risk/ noun

1. A likelihood of evasion of a course of events by voluntary withdraw, removal or secreting away from a jurisdiction in order to avoid detention, arrest or interrogation, or the institution or continuance of civil, criminal or other proceedings.

2. A person characterized by the likelihood of such evasion.

Really? A flight risk? They must have read the blog about Cujo and the doggy door, or the Code Adam incident at Wal-Mart.

It is hard to image, my son, a flight risk. Actually, I guess if you look at it from an historical perspective, it is kinda cool. Consider who else has been a flight risk over the past 100 years...

Daugherty siblings - a modern day Bonnie and Clyde and her other brother Clyde.
Julian Assange
James 'Whitey' Bulger
Adolf Eichmann - arrested by Israeli Mossad in 1960 for WWII war crimes
Sirius Black
Ted 'Unabomber' Kaczynski
Dr. Richard Kimble - escaped twice, once from 1963-67 then again in 2002
D.B. Cooper
Imelda Marcos - her 3000 pair of shoes remain at large
O.J. Simpson - the Bronco finally ran out of gas the second go around

So, we have taken corrective action. We have revoked Ethan's bond, and changed the locks on the doors. I even thought about marking his clothes with a number, like they do with prisoners, so we can keep track of him. How about 2-4-6-0-1? - blast it, I knew I was forgetting somebody on the list!

All is not lost however. After breaking the bad news to us, they did at least have some alternative elective classes to offer him.

1) Guitar - Genius, especially if it is a guitar dismantling class. I can hear it now:

'This is a G sharp... You know, when you see a dot with a line that points up from it, like this, and there is a thingy right here that - hey who colored in the sharp sign? - that is the sign for a sharp it looks like the 'pound sign'... you know the 'pound sign' its two vertical lines with two horizontal lines... vertical, that's when the line goes up and down, and then lines go across, like in a game of tic-tac-toe...'

2) Drama - even more genius!

'Today we present a play, well I'm actually not sure what the play is - it's probably more like an improv - it all depends on how he feels. It might be The Emperor's New Groove, could be any of the dozen or so Land Before Time movies, he might even quote Muppet Treasure Island - you know that part where Kermit is on board the ship and Mr. Erroll does the roll call '...Big-Fat-Ugly-Bug-Face-Baby-Eating-O'Brien...' - we're just hoping it is something appropriate. Either way, it will star only Ethan, and it might last a while. Though it might be very short, in fact he might decide all together to just stand there with his arms folded and refuse to cooperate, either way... Hey, put that down, that's not a sword... To get on with the play, we're not sure what to call it, we'll play it by ear, but I'm guessing we'll call it something like, "I Feel A Blog Coming On..."'

An Uncharted Voyage - a guest post

2011-08-12T13:31:00.000-07:00

Classical elements- believed to reflect the simplest essential parts and principles of which anything consists or upon powers of anything are based. (Wikipedia)

I was being led down a stream with my five-year old son last week when it occurred to me that there were a lot more elements involved than those we could feel with our senses. The basic elements which exist to mankind are described as "the sea, earth, sky and wind." (Wikipedia) We are accustomed to experiencing these things outdoors in nature, but a special needs child soaks them in differently than most. The Western civilization describes these elements as "substances" but in Buddhism they are referred to as "sensory."

My husband and I took him down to the stream so that he could sink his toes in the sand, feel the cold of the water rushing past his ankles, and maybe toss a few rocks. Instead, he immediately started dragging me downstream. Some of the rocks were large and in places the water was so deep that we couldn't see where to step and since we weren't wearing swimwear I was not really interested in getting too wet. I kept trying to slow him down but tightened my grip on his hand because there was no way I was letting him loose in a creek. I couldn't control how fast I could get to him if he fell in too deep or got too far ahead. It struck me that we lead our children onto new experiences where we know they'll get to learn and explore but the second they start to pull away is when we tighten our grip. I guess that's one of the elements of being a parent, always telling our kids to slow down, watch their step, keep the end in sight, etc. We are most at ease when we are in a controlled environment where we can predict how things will go, or if they get out of control, we can swiftly fix the situation.

With a special needs child, most of us are on an uncharted voyage, being swept out to sea without a compass. The waves rock our ship back and forth, sometimes in a calming motion when things are going as we expect and occasionally a big storm ensues and we are struggling to dump buckets of water over the side so our ship doesn't sink. One of the beautiful lessons I've learned so far on this voyage is that everyone's ship is sailing, but we are all using different instruments to find our course. Some parents chart their course by finding out everything they can to know and understand about the journey ahead. Other parents set sail and know that they'll encounter obstacles on their journey but take them in stride as part of the trip and don't really plan too far ahead. I think the lessons learned in our family generally occur when we are out in public (or at sea!) and how we try to deal with them.

We went to the beach this summer and a similar thing happened, just like before with the creek. Before we had a chance to unpack the chairs or set up the beach umbrellas our son went running full-speed into the waves, laughing and soaking up the excitement of the ocean. Kids are so willing to jump into new situations with both feet first but here are mom and dad, cautioning, and warning them to be careful and pay attention so that they aren't hurt. As the day progressed he liked to approach girls on the beach and say, "hi," then run away. The girls would respond likewise, laughing, and he'd do it over and over again. It was a fun, silly thing that made us smile. On the other hand, he also went up to several people and kicked sand on them or ran onto their towels. He doesn't understand limits or boundaries and although we've punished him and tried to explain why you don't do that I've been pleasantly surprised at how patient and forgiving other people were with him.

We went to the mall the next day and he played with his SpongeBob on top of some man's head and later threw his stuffed animal on the "up" escalator as we were headed "down" the other. Both people he affected could have been angry and yelled at him, but we apologized profusely and they let it slide. I'm grateful that others are understanding and hope that I'll remember their "tender mercies" with my child and treat others with that same kindness and quick forgiveness, because we never know how they've charted their course for the day and what kind of storms they're personally battling.

So, if the four elements are defined as, "the simplest principle upon which anything is based." I would say that similarly human nature is based on the simple principle of love.

Candi

Laurie - a guest post

2011-08-11T18:47:00.000-07:00

I grew up with a special needs cousin. His name was John Lawrence Jones. We called him Laurie. He was born in 1921 in a small town in Arizona: St. Johns. He spent the first few years of his life there with his mother and grandmother. His father had disowned him when his diagnosis of cerebral palsy was discovered. At that time, that also meant severe retardation. Laurie’s mother and father divorced and he moved to Phoenix. His mother passed away from tuberculosis when Laurie was 7 years old and he was sent back up to St. Johns to live with his grandmother, Helena, my great-grandmother. Being a small town, his grandmother would ask him to run easy errands for her. In town, (I have been told,) if members of his father’s family or his father himself would see Laurie, they would cross the street to avoid him. How unfortunate for them! His father eventually remarried.

Laurie’s grandmother and then his aunt taught him to read and write. He learned to do puzzles, and when they were completed he would take them apart one piece at a time and number the backs so he could put them together faster the next time. He loved spending time on the upper ranch helping his uncles with their ranching duties. He was even able to ride horses before his disease crippled him so that he couldn’t straddle the horses. As a teenager, he became the watchful eyes of my big brother, a responsibility he wrote about. Yes…we have a journal that Laurie kept. It is written in his careful, child-like handwriting and it is precious to us all. Laurie had an amazing memory. He could recite, even into his older years, the birthdays of anybody in the family. He was the go-to guy if you ever forgot a date! My first memories of him include him walking even before a cane. And he was funny. When he would laugh, he would bite on his hand and rock back and forth. He loved to talk and tell stories. It took a long time to tell a story because as his age and disease progressed, it affected his speech. We would constantly ask him to repeat himself or get the story wrong, so he learned to spell out the words we couldn’t understand. So there you would be, listening to a story and trying hard not to get confused when he would talk and spell and talk and spell. And when we got it, understood the story, he would slap his leg and bite his hand. As we all got older, he insisted on having his picture taken with all of the new babies. And when the camera would flash, he would close his eyes…every time!

Jumping ahead many years, I had the wonderful opportunity to become Laurie’s legal guardian; a shared responsibility with a cousin. Laurie had outlived his mother, his grandmother, his maternal aunt and my grandmother, his maternal uncle and his wife…all who had been his legal guardians and caregivers. My cousin and I were blessed to find a wonderful home for him nearby so we could visit. We would trade off on who got him for holidays and his birthdays. When our families would all get together to visit him at his group home, the staff couldn’t get over how many lives this “old guy” had touched. He lived to be 85 years old. His funeral was huge, filled. He is missed.

Several years ago, I was visiting some friends in St. Johns. I mentioned Laurie. The woman I was talking to gave me the phone number of a relative of Laurie’s father. I called this woman. She was astounded. She said she remembered, “the little, crippled, retarded boy in Helena’s yard,” and she had been told who he was. But her family, Laurie’s father’s family, all thought that he died young. When I told her he was 85 and could talk and read and write, she got very quiet. She asked if I had pictures. You bet I have pictures!!!

Wendi

Marina - a guest post

2011-08-10T10:25:00.000-07:00

When we were living in Japan, we started attending a Japanese speaking ward in our last area. I was 12 or 13. There was one family with a daughter named Marina that went to my school, but was in special ed so I didn't see her very often. Her family hadn't been to church in awhile, but our parents liked each other and got together every so often. We had a ward BBQ at the park, and I invited my best friend from school and her family, who were not members of the church to come with us. I was playing volleyball with my friend's family when Marina came over and wanted to play too. Of course we let her, but after playing with her for a little while, we all noticed that she couldn't even come close to hitting the ball, thus halting the game more often than before. Nobody said anything about it, but I could tell my friend's family was getting more and more irritated. It started to irritate me too. When I talked to my mom about it, she said she couldn't believe that my friends weren't being more accepting of Marina and that I was feeling the same way they were. I felt ashamed.

So it gave me the idea for an Personal Progress project. I probably ended up spending a lot more than the required 10 hours with Marina, but I became her friend. I spent time with her, got to know her, and taught her English. And once I really got to know her, she wasn't really that "special" or "weird". She was shy like me, and just needed time to open up to someone. It taught me patience, and that everyone is more important than a silly volleyball game and that we just need to be more accepting and show love to people with special needs too.

Alexa

Joseph - a guest post

2011-08-09T13:31:00.000-07:00

At scout camp, I accompanied Joseph to his environmental science merit badge class. The instructor was light-heartedly describing what he might do to the scouts who arrived *LATE* -- which involved a large walking stick he held in his hand. Joseph, ever watchful, and ever striving to do the right thing -- and ensure that every one else does too -- shouted out "NO! That's WRONG." When the instructor seemed to disregard his counsel, Joseph took matters into his own hands -- he grabbed the offensive stick, ran down the trail 200 feet, and threw it as far as he could into the bushes. I have tried to explain that it is not appropriate to force others to do the right thing, but he still loses control occasionally.

Elder Holland was giving a less-formal-than-normal fireside for the youth of several stakes. Joseph called him on his use of the s-word ("stupid") in describing his younger self. It wasn't very loud -- I'm sure Elder Holland didn't hear the rebuke -- but Joseph was very bothered by it.

Joseph knows that he will turn 19 on a Tuesday, and he knows that missionaries always go to the MTC on Wednesday, and is confident that he will be there the day after his birthday.

He also plans to become the king of Russia when he is 17. He plans to leave the kingship in the hands of a faithful servant while he serves his first mission at 19. (His second formal mission will begin at 65) He wants to preach the Gospel to all of the world, especially in Russia, and Iran (successor to ancient Persia/Babylon -- If Daniel could get Nebuchadnezzar to listen, why can't he teach the Shah?)

Earlier this year, Joseph decided, completely on his own, to read the Bible. He started in Genesis, was not the least bit deterred by Leviticus, Numbers, Deuteronomy, or Isaiah, but plowed on through to Revelation. Now that he has finished the New Testament, he is tackling the Book of Mormon. Yesterday he was reading Abinadi's ministry to King Noah, and he'll probably start Alma before today is over. How many 13-year-olds can say the have read the entire Bible?

Anonymous...for now

What's In A Name?

2011-08-08T06:52:00.000-07:00

Since I was a young man I have had nicknames, have had different titles, and have even been called a few choice words; in short I have been called by many names. I will pretty much answer to anything — to this day there is one person who even calls me Jeffy; I wouldn’t suggest anybody try to make habit of it, unless you are the one person authorized to call me that!

As a teenager my friends all called me Chief, but for two different reasons. Some called me Chief because my name in Spanish is Jefe, which means chief; others called me Chief because my dad was a police chief. When my wife and I got married we moved into the same ward as her sister. As I worked nights and weekends most people at church didn’t know me, but knew of me. When I would be introduced face to face for the first time they would simply say, ‘Oh, you’re Ann Burn’s sister’s husband!’ Over time I’ve been called Officer, Detective, President, and Bishop. A few months ago at a church function I shook hands with a man as he asked my name. I told him, and he quickly replied, ‘Oh, you’re the Stake Relief Society President’s husband.’ I simply replied, ‘Yes I am.’

I’ve never been a stickler for names or titles, though when in public settings I strive to be very proper with titles — not as it pertains to me, but in how I address people — it is a matter of respect. I have very similar feelings for labeling, a close cousin to names and titles.

The general function of labels [is] widely known and recognized as a method of distinction that helps people recognize one product from another.

Consider the golden arches of McDonalds and the red and white bucket featuring a white haired southern gentleman with goatee and string tie of Kentucky Fried Chicken. The labels are both universally identifiable and yet patently dissimilar. ‘In social terms, labels represent a way of differentiating and identifying people,’ they are ‘shorthand for what we want to communicate and yet, they often obscure what is really being said.’

Daniel Gottlieb, whose grandson Sam was diagnosed with autism, wrote that Sam needed to be ‘classified that way in order to receive the services’ he needed. I wholeheartedly agree. Still, Daniel knew Sam was ‘so much more than autistic.’ In Letters to Sam, he wrote,

Over the years I have learned that I am not a quadriplegic. I have quadriplegia. You are not autistic. You have autism…with my spinal cord injury and your autism, we look different and act different. But…no matter what happens to our bodies or our minds, our souls remain whole.

Amen brother!

As a young bishop I had opportunities to counsel people over a variety of issues. A common theme I would come across as I spoke to people was that they tended to materialize their trials, and tribulations. As they would go through the process of changing their lives they were reluctant to let go of their baggage. It was like declaring, ‘you don’t understand. This baggage is Gucci! This baggage didn’t come from Wal-Mart, or the dollar store, these are designer pieces of baggage that I carry!’ Worse was the implied argument that they had collected the whole set. It wasn’t like they just had a piece of fancy baggage, they had the whole set; how could they afford to get rid of it. How would anybody know what he or she went through if they got rid of every piece of baggage? If they gave it all away then nobody would ever know it had been Gucci!

It didn’t matter that the skeletons were gone, and that these individuals were carrying around empty shells of baggage. What became important to them was the status of it all.

As if life was not dramatic enough with the ups and downs we all face regularly, it seems sometimes we tend to seek out additional problems, or worse yet, we seek out additional labels to throw on what we have so that it looks more important. If a picture is worth a thousand words how priceless are a handful of labels? Could this be why the world has such a craving for reality TV? If we can’t fill our status banks with dysfunction and drama in our own life then we seek out other places to obtain it, even if it is just by proxy.

And so we haphazardly throw out labels and give names and titles to things:

‘Oh he’s schizophrenic,’ ‘she’s bi-polar,’ ‘she’s anorexic,’ ‘he’s an alcoholic’ and the meaning gets conveyed and yet, is it? After all that’s not ALL the person is. It’s something they have been diagnosed with, perhaps are struggling with, it’s a medical term, but it does not encompass who and what that person is in their entirety. When I hear someone describe another person as ‘autistic’ I understand that person has been given a diagnosis of autism, but I don’t presume to know much more about that person…I can’t know from the various labels whether the person has a sense of humor, if… the person is gregarious or shy, enjoys reading about painting or knows everything there is to know about quantum physics. The label does not tell me about the person’s passions, dreams, desires or talents.

When all is said and done, if people don’t remember my nicknames, titles I've had, or recall that I wrote blogs, or if my resume to them is a blur, and my church service unremarkable, so be it. As long as there is at least one thing for which I am known that is fully descriptive and tells everybody about me, my passions, dreams, and desires I will be at peace.

So, what got me to thinking about this? During our vacation this summer, Ethan did something and got in trouble. I don’t recall what it was that he did; it obviously made such a lasting impression on me that I can’t even recall when or where or what it was. But a statement he made has had a lasting affect on me. When he realized he was in trouble, he apologized with a perfect Ethanism — that familiar morphed movie quotation with tangled syntax, semantic, and organizational noise that fit so sweetly. It was music to my ears.

'Dad, I am proud of myself to call Jeff my dad!'

Gary - a guest post

2011-08-07T07:23:00.000-07:00

Back in the olden days when I was a 3rd grader (nearly 45 years ago), I was asked by my 3rd grade teacher to help a classmate during our lunch recess time. This was my first experience with someone who struggled with academics. As I recall, everything went well until one day I made him cry. To this day, I don't know what I did, but I have remembered that moment to this day. I know that experience made me a better teacher today. I often think of "Gary" when I am struggling with a student with special needs who is just "not getting it" and becoming more and more frustrated. "Gary" has always helped me take a step back and try a different approach. Wherever "Gary" is today and whatever he is doing, I hope that he is and has been successful. I have had many "Garys" through my 20+ years of teaching who have taught me more than I could ever teach them. What a privilege it has been to know each and every one of my special students!

Kay

Lizzie - a guest post

2011-08-06T13:14:00.000-07:00

As a child, I had the privilege of being best buddies with a dear cousin who happened to have Down syndrome. Lizzie was substantially older than I. I have no idea how much older ... age was irrelevant to our friendship. I do know that several of my siblings went through a period where Lizzie was their best friend as well. Many hours were spent at Lizzie's house working Jig Saw puzzles; she was a master at those tiny, 1000 piece puzzles. I remember one particular day as we were working a huge puzzle, she pulled out a piece of paper that she was particularly proud of. Scrawled on the paper was ELIZABETH. She had learned to write her name. We loved playing in her chicken coup. Her older brother taught us to rope the chickens. Sometimes we shot baskets. She always took very special care of everything she had. One such thing was a beautiful orange basketball. For some reason, her basketball never faded.

Perhaps our most enjoyable past time was peddling through the neighborhood on our bikes ... hers was a gold beach cruiser type 3 speed; mine a yellow banana seat Schwinn with monkey hanger handle bars. We peddled for hours, sometimes visiting ... sometimes in silence. Either way, we were both comfortable and enjoyed the breezes in our faces and the companionship of a buddy. One particular day, Lizzie refused to ride bikes. In fact after several refusals, her mother explained that a few days prior while in route to my house, a particular boy in the neighborhood called her "RETARD" and thrown rocks at her. She returned home wanting to know what retard meant, and no longer wanting to ride bikes. I kept trying and got her out a few times, but something had changed.

As I got older, Lizzie and I remained friends, but my life changed. We wrote letters back and forth while I was at college. I always visited her when I returned home and I was so excited to have her hold my first baby. Lizzie was my best friend for lots of years during my childhood. I remember my friendship with her with joy ... and many fond memories.

Suzanne

O' Captain, My Captain . . .

2011-08-05T19:53:00.000-07:00

Why do I stand up here? Anybody? . . . I stand upon my desk to remind myself that we must constantly look at things in a different way. . . .

. . . Now we all have a great need for acceptance, but you must trust that your beliefs are unique, your own, even though others may think them odd or unpopular. . . .

I love the theme of Dead Poet's Society: Carpe Diem. To seize the day, to face life, to wrestle with all that is life, to make something of life, to 'contribute a verse,' to leave our mark.

With that said, there are three types of people who read this blog:

Followers,
Those that are not followers, but read regularly and leave occasional comments, and
Those who are stalkers.

Now, please don't be offended by that word, I use it tongue-in-cheek. If you are one of those surreptitious readers whose only footprint of evidence that you have been here and read my thoughts is the tick mark on the visitor's log, know that I love the fact that you stopped by and read - I hope you enjoyed it. I hope you got something out of it! That is why I write in the first place: to share.

Today, however, I am asking all of you to be 'slightly more daring!' Hence the name of this post is

O' Captain, my Captain.

I ask you to be slightly more daring by accepting my invitation to write a guest post. Your post can be about Ethan, or somebody else who has special needs, be they family, friend, student, fellow church member, neighbor, or stranger. It can be short or long, funny or serious, cute or emotional, mundane or life-changing, frustrating or just plain silly. The only prerequisite is that it is a personal story about your interactions in the special needs world. Fair enough?

Those of you daring enough to accept my invitation can send your work to me at:

jymmebe@gmail.com

Just write 'Guest Blog' in the subject line. You can send it as the text in the body of an email or as an individual attachment, it doesn't matter, just send them. People have various ways of blogging so, as much as possible, I will try to retain your style (i.e., formatting). Remember, names can be changed to protect the innocent! =)'

Be daring; you will not be asked to 'sit down Mr. Anderson.'

Thanks, I look forward to hearing back from you.

EARS, EARLOBES AND A BLOODY NOSE

2011-08-01T21:57:00.000-07:00

One night, while at a 50’s style diner, Michael, our oldest, thought it would be funny to give Ethan a drink from his cup—his cup of milk. Ethan hates milk! He hates ice cream! He loves cheese, though only if it’s on a pizza, or a cheeseburger; but he hates the part of the cheese that sticks out past the burger… Sorry.

Back at the diner, I ended up wearing the milk all over me, after Ethan spit it out. For the rest of the night he sat on my lap, half naked, while we tried to finish dinner.

You heard right, half naked, because you see he refuses to wear clothes that have any wet spots on them. We’re talking even the slightest hint of water on his clothes requires them to come off. That is unless it is raining, then he loves to get his clothes wet. Of course if it is raining he has to take his glasses off, because he can’t stand to get water on his glasses.

Funny thing about his glasses is that they have to be meticulously clean! We ended up having to get a new pair, because he was so distracted by a small scratch on them, that he was constantly asking us to clean them. After twenty minutes of cleaning, the scratch was still there, and the request to clean them continued.

I could go on, and on. Needless to say these quirks do not just reveal themselves in his choices of food, or how he wears his clothing, or how many items of clothing he wears, or… Well, you get the picture.

Because these quirks are based on a sensory need, an anxiety, or a compulsion, these quirks have a stunning affect on his environment, and the world around him.

Take noise for instance. He is very particular to noise. When listening to the radio in the car, and a favorite song of his is being played, the volume must be set just perfectly at level 10. If it had been on level 9 when the song began, he will quickly ask for it to be turned up. If you turn it up too loud he will ask for it to be lowered. The level is 10 precisely, no more no less.

When we are in an uncontrollable environment that is too loud, there are two options to how he will react. First, scream at the top of his lungs to gain the attention of all around him so he can yell shut up! This normally doesn’t work in public, but has an eerie affect on family gatherings, and induces a quick exit to the far corner of the house, or church, or wherever for some hug therapy, and a few minutes of cuddling to calm the anxiety.

His second option is to plug his ears, any way possible. We discovered the need to plug ears while at a local restaurant for a Father’s Day celebration. The restaurant is quite loud, as patrons talk over the hiss of grilled fajitas, sizzling on their iron skillets, which dart constantly up and down aisles to the awaiting palates.

Like most restaurants, this one has an annoying rendition of Happy Birthday, sung by the staff that includes a boisterous array of clapping hands, culminating with the popping of balloons in crescendo. The concluding “pop” and the raucous cheers that follow render a loud shriek from Ethan’s lips.

Following the outburst, he repositioned himself on his chair, sitting like a vulture, with his feet on the seat, squatting down, his one ear resting on his knee, the other ear being plugged by his finger. With his free hand he drinks from his soda. No eating is done because there is nothing on the menu that he eats. When both hands are required, say he is drinking and playing with a toy he can’t seem to put down, then I come in. Sitting on the end of the table I can reach around and using both hands plug his ears.

Over time, this procedure has worked itself into an art form, a science. We use it at a variety of locations. One place where it came in particularly handy—pun intended—was in public bathrooms. I don’t know if many people notice, but industrial toilets are very loud when they flush.

You may not want to picture this, but imagine a small boy, his pants and underwear at his ankles (one of those sensory things) standing on my feet—to obtain the correct height for the urinal—trying to go potty, while I stand as casually as I can, my fingers plugging his ears, to drowned out the roar of toilet flushes from other patrons. A social story, which took some time to set in, eventually led him to use the stalls for all things pertaining to the bathroom – this is particularly help since at age 15 he still drops his pants and underwear to his ankles. Despite the idiosyncrasies, he now uses the bathroom by himself, his hands, since he sits, free to plug his own ears. When it is time to flush, he plugs his ears, and kicks the handle with his feet.

We have tried converting the finger plugging to earplugs. We’ve done this at movie theaters, amusement parks, and other notoriously loud locations, where the noise level is consistent.

The only drawback to the earplugs is related to his compulsion to tuck in his shirts. Earplugs, like his clothing, must be tucked in as far as possible. This creates a medical danger, so we do our best to watch him like a hawk. Occasionally we discover he pushed an earplug in to far, and we have to remove it with help from a pair of tweezers.

When I say these quirks, sensory needs, anxieties, and compulsions, have a stunning affect on his environment, and the world around him, I mean the whole world around him. There doesn’t seem to be anything that is not affected. Some of these characteristics seem to affect us more than they do him. The most dramatic one causes us the biggest stress pertains to his reaction to Epistaxis; the common bloody nose.

Nosebleeds, they say, are due to a rupture or hemorrhage. They apparently have witnessed Ethan’s when they decided to associate nosebleeds with words that give connotations of gushing, bursting, and breaching, like the flooding Mississippi as it breaks over the banks of the levees. Dry conditions, allergies, nose picking (ALL of which occur around here unfortunately) are major factors in the cause. We have tried nasal sprays, such as simple saline solutions, but I’m sure you could imagine how well that goes over…

When these ‘special occasions’ first began in earnest around here Ethan was fairly young, young enough that he didn’t speak much, so we would only discover them by accident. Add to it a lack of fear in response to bona fide dangers, and a dash of obsessive compulsion, and bloody noses were fun; nobody wants to put a stop to having fun!

Needless to say some of these occasions were downright horrific. At least for those of us that knew we should be worried about blood coming from our body, or that it is dripping down the ladder of the bunk bed, pooling on each step, splattering down the wall, and gathering in a puddle on the carpeting. Normally we'd find him leaning over the marble sink as it fills with blood, splatters of which dance out of the sink and on to the mirror, faucet and counter top. If we are lucky, when we find him, he has already started to clean himself up, even if this does cause an excessive number of towels to be christened.

These E-Ticket rides arrive quite suddenly, for the most part, and occur at all hours and in all places. Take for instance one Sunday. I was sitting at one end of our pew at church. Ethan was sitting quietly at the other end, against the wall, a hymnal on his lap as he played with a toy. I glanced back once or twice during the passing of the sacrament to see what he was doing. He was fine. I glanced over once more and saw that he was picking his nose. I motioned for him to stop, and he complied.

I turned back to look up to the front of the chapel when seconds later a friend sitting behind me tapped me and said, ‘His nose is bleeding.’ I turned to see the green hymnal on his lap was now red, his hands were covered in blood, and he appeared to have a red goatee. I stood up, grabbed him and the hymnal and pressed them against my chest, lifted him off his seat and turned to flee the chapel as quick as I could without breaking into a full sprint.

My eyes were fixed forward and to the door, I couldn’t tell you what facial expressions were being made, but as we turned to head out of the chapel, I knew Ethan had pulled his hands out from against my chest, and was holding them out so all could see.

In the bathroom we took several minutes to stop the bleeding, half an hour later we were nearly cleaned up from the encounter. Needless to say the hymnal made its way to the trash – it was the first, but would not be the last hymnal we disposed of because of a bloody nose.

Since that day we have become fairly well acclimated to these little detours on the acronym highway. But there is just one thing we have never come to grips with; one particular little thing that occurs to which we still find our knees wobbling as we unwillingly participate in the adventure.

Following each nosebleed there is the eventual escape of a large snotty blood clot – I apologize for the graphic description. On his FUN-O-METER, the escape of the bloody snot-clot is a perfect 10. It is the apex of all that is exciting to him about bloody noses. A close second is that bloody noses allow Ethan to spit blood! A trait he describes as, ‘Way cool!’

For us there is no fun in these adventures, but we trudge through them as best we can. During a trip this summer we experienced an overload of nosebleeds. We had at least three one day, and nearly one a day after that for the week. As we were driving home, heading down the highway in a construction zone, with no safe place to pull over being available, a bloody nose decided to rear its head. As I drove, my wife grabbed napkins and a plastic shopping bag, while our oldest daughter shuffled seats with the youngest to administer aid. The bloody nose was not as bad as they had been during the week. It lasted about five minutes, and culminated in pegging the FUN-O-METER with you guessed it.

Well, everyone survived, no hymnals were damaged, no seats stained, just a few extra handfuls of fast food napkins met a fate worse than greasy burgers and fry sauce.

After returning to work the thoughts of that particular trip had come to my mind and I decided to ask my coworkers if they knew of any good treatments or home remedies for treating or stopping bloody noses when they occur. Tampons were suggested, as well as ice packs on the nose. One coworker, caught off guard by my question asked me what had brought this on. I briefly related our experiences with Ethan and bloody noses. He sat there for only a second, and then asked intently, ‘How is it you come to work everyday so happy?’

I hadn’t been looking for pats on the back that day; even now, as I type, I have both hands on the keyboard. I threw out a simplistic answer, ‘Oh, you know. It is what it is…’ His question however has haunted me for several days now. Why am I able to be so happy with all this turmoil? I know it’s not me, so what could it be?

While studying for a lesson I had to give this past Sunday, I came upon a talk that gave me a small glimpse in to the answer to the question.

Life presses all kinds of burdens on each of us, some light but others relentless and heavy. People struggle every day under burdens that tax their souls. Many of us struggle under such burdens. They can be emotionally or physically ponderous. They can be worrisome, oppressive, and exhausting. And they can continue for years…No matter the burdens we face in life…Burdens provide opportunities to practice virtues that contribute to eventual perfection. They invite us to "yield…[to put] off the natural man and [become] a saint through the atonement of Christ the Lord, and [become] as a child, submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon [us], even as a child doth submit to his father.” Thus burdens become blessings, though often such blessings are well disguised and may require time, effort, and faith to accept and understand… (emphasis added)

As the Apostle Paul taught, by bearing ‘one another’s burdens’ we ‘fulfill the law of Christ.’ (Galatians 6:2) It is just as true that ‘…he that keepeth the law, happy is he.’ (Proverbs 29:18)

What do you call two banana peels?...

2011-07-27T21:28:00.000-07:00

On Monday, July 11, we started off on a trip to Utah for a family reunion, actually two family reunions. Both of which were scheduled to overlap in Logan, in the beautiful Cache Valley.

It was a great day for a drive. It was completely overcast, and it was early, so we didn’t have any glaring sun to contend with, and we got occasional light sprinkles that kept the heat down. We drove through Las Vegas [actually we bypassed Sin City by turning off at Boulder City and drove along the Lake Mead shoreline to Moapa Valley and caught I15 near Overton—a very pretty drive, though it cost $10 just to drive through the “recreation area” and it probably added about 20 minutes to the trip], stopped for lunch in Saint George, and landed in Salt Lake just before dark.

During the entire drive Ethan complained that he was hot, so he took off his t-shirt, but then immediately felt cold so he wrapped himself up in his large silky blanket, and surrounded himself with pillows. Yeah, it’s a peculiar thing to do, but that’s my boy.

When we got to the hotel, we unpacked, and settled down to get some rest. As we knelt around the kid’s bed for prayer I was struck with an awful smell. Quizzically I glanced around. Morgan noticed and knew immediately what I was thinking.

‘It’s his feet. They STINK!’ she replied.

‘Are you kidding me?’

‘NO! They’re awful. He keeps his socks on all day.’

My wife chimed in, ‘He hates having his feet cold, so he keeps his socks on all day. I have to hide his socks or he runs out before I do laundry again.’

‘Oh my gosh, that’s awful.’ No, not the bit about laundry, the smell, it was awful.

Evie remarked, ‘But he has the softest feet in the world!’

We bowed our heads and tried again to pray, but I just couldn’t do it.

We hadn’t planned on it, but necessity had determined that we fight this battle, and we had to fight it right now.

‘Okay,’ I announced, ‘take off our socks.’

Faster then your eyes could water from the smell of his feet, the fight was on. Crying ensued. The socks came off. Shivering immediately followed this as if he were in the last legs of the Willie and Martin Handcart Company, crossing the icy Platte River in late November.

It became quite clear, quite quickly, that neither bare feet, or a new pair of socks would not do the trick. Those feet needed washed.

Off we went into the bathroom, in what appeared to be a death march from Bataan. Running the water to a nice temperature, I lathered his feet up with soap and rubbed away, getting in between his toes, and up his ankles.

Evie was right; he has the softest feet in the world.

Too bad they stink like a skunk that climbed out of the butt of another skunk! Man, they reeked.

Rinsed, lathered, rinsed, lathered and rinsed again. I think we got it.

Yeah, I smelled them; up close and personal! They were clean and odorless.

Now for the negotiating. It was obvious he could not wear socks all day, a compromise had to be reached.

Think! Think! Think!

I got!

‘Hey buddy,’ I said, ‘we can’t wear socks all day . . .’

‘But I’ll freeze . . .’

‘Yes, but it is bad for your feet. They’ll stink. How about when we are at home we wear slippers? We can buy you a nice pair of slippers that you can wear just around the house.’

‘Like Carl in Up?’

‘Yes, or like Mr. Wilson in Dennis the Menace,’ Evie said.

‘How would that be? Would that be okay?’

Ethan smiled, ‘Perfect!’

The next time we were at Wal-mart we picked up a pair of slippers, with his approval. Of course when he doesn't have them on he keeps them right next to his bed, like Carl.

So far the tactic seems to be working, no socks on his feet while in the house. And more importantly no smelly feet!

. . . By the way, what do you call two banana peels?

A pair of slip-ers!

Elder Kornegay

2011-07-26T16:42:00.000-07:00

I once blog about what life would be like around here when Michael left for his mission. I wondered how Ethan would handle the change. For now, his adjustment to Michael being gone has been better then expected.

A few days ago, Ethan asked again when his big brother was coming home. He doesn't quite grasp the whole 2 year thing. Evie remind him that Michael will be home when he is 17. . .

How did he take that news?

He just got quiet and then said, 'Hhhmmm.'

We know he is experiencing some difficulty with the change. This is evident by a letter he wrote him last week. See for yourself.

I suppose the bigger question is still, will this feeling last, will he get over it, will it get worse before it gets better? Only time will tell.

Speaking of time, the past month has been quite hectic. We sent Michael off to the MTC, then I was activated to work eight days straight for the MLB All-Star game events in town, then we went to two family reunions in Utah.It is not that I have not had anything to write about, trust me, I have plenty of material, it's just a matter of finding a few minutes to sit down and write.

But, be patient, you wont want to miss the next few installments . . .

* ALERT * - Got It!

2011-06-09T21:25:00.000-07:00

I am pleased to report, we recovered the basketball.

I won't sicken you with a play by play of the details. What I can tell you is that he seemed quite proud of the fact it 'came out my butt!'

This, however, would be a very boring blog if I didn't provide some facts about the incident. So how about this: Before and after shots? It works for diet ads, I thought it might work for this, so here goes.

BEFORE:

AFTER!

Hey, this is a PG rated blog people, what the heck did you think. Trust me. It went in here faster than it went in his stomach!!!

HOW YOU DOIN'?

2011-06-08T19:30:00.001-07:00

Great question?

I for one am doin' great! What more could one person possibly ask for?

No, I mean it, what?

Today was pretty much like every other day around here. In fact it was soooo much like all the other days around here the only thing that made it different was this one little inconvenience.

It all started at 9:19:53 when I received the following text from my wife.

'Uh, ya, Ethan just swallowed the little basketball . . . '

That text was then followed up by a phone call.

'...Ya, the little basketball! Sorry, Ethan says the mini basketball!'

'Is he okay?'

'The nurse had me make sure he could breathe, and swallow food, which he can.'

'Good. How do you know he swallowed it?'

'I noticed he started choking and hitting himself in the chest. I asked him what was wrong and he said he swallowed the little, sorry mini, basketball.'

'So what do we do now?'

'The nurse said we need to check his poop in six hours and then every time he poops for 7 days.'

'Do we have plenty of gloves?'

'Yep.'

'And if we don't find it?'

'We have to take him for x-rays . . . '

'...great, and probably have it surgically removed!

'Yep.'

'Does he know we have to check his poop?'

'I told him. You should have heard me trying to tell the nurse why a 15-year-old had a mini basketball in his mouth?'

'I'm sure she was wondering, "15 years old, what the..?"'

'I think she got it, she was nice...'

'Let's hope he doesn't do this again.'

'He says mini basketballs taste disgusting.'

As this conversation was occurring, my mind was also racing, thinking about what exactly all of this will entail. Those thoughts then caused me to think of this movie scene, which pretty much sums up our ~~day~~ year!

ENJOY!! :)

P.S. We'll let you know when we find the mini basketball!

Dear Jesus - Part 2

2011-05-24T19:02:00.000-07:00

Weeks ago, while my wife was at the doctor, she mentioned that a mole had appeared recently on her forearm. Dr. G, a melanoma antagonist, determined it was best to remove it. Which he did, right in his office. The procedure took less then ten minutes, and a single stitch sealed the deal. A Band-Aid was placed over the stitch and instructions were given to my wife regarding wound care and medicine was prescribed for pain. The only thing he forgot was to give us an idea of how to explain it to Ethan.

Later that same day, as Ethan got off the bus, he immediately noticed the Band-Aid. He loves Band-aids. Band-Aids mean owies. Owies mean scabs. And scabs need picking! After several minutes of him pestering her about what had happened to her arm, she reluctantly lifted the Band-Aid and showed him the stitch!

Picture one of those steam powered factory whistles erupting with a piercing screech!

Faster then Scotty could produce warp speed, Ethan was maxing out the warp drive of his compulsions and anxieties over the single stitch and the owie on his mom’s arm.

His mind and mouth went into overdrive as he asked, and repeated a litany of questions!

‘Mom, who did this to you?’

‘Doctor G.’

‘Mom, I’m going to kick Dr. G’s butt.’

‘No, we don’t talk like that, he’s a nice Dr.’

‘Did he use a knife? Like a pocket knife?’

‘No.’

‘Was it like a sword, like this…’ (as he reenacted a scene from his mind that seemed a cross between The Man in the Iron Mask and Teenage Mutant Ninja Turtles.)

‘No, he didn’t use a sword.’

‘Mom, is that a hair?’

‘No, it’s not a hair, it’s a stitch.’

‘Like Lilo and Stitch?’

‘No. Like when you sew something, like there on your pants.’

‘Mom, I need to get the tweezers and pull it out.’

‘No, we don’t pull it out.’

‘Uuuuuuuuughhhh, Mom, I have to pull it out. It’s a hair.’

‘No, it’s not a hair.’

‘Mom, who did this to you?….’

The questioning repeated. Not just once, or twice, not even a dozen times, or even four score and twenty. The questioning went on and on and on! The same questions were asked and answered, and asked and answered, and asked and answered over, and over, and over for hours! It was as though the scene had been recorded on video and played on a continual loop. No question was ever asked out of order, and no question was ever missed.

What started at home right after school, continued in the car that afternoon, and through out Wal-Mart as we shopped for groceries that evening. Finally, when our breaking points were just about reached there was a lull – a calm in the storm.

‘Dad, I’m going to ask Jesus to take his hand like this (as he stretched out his arm to it’s full length and gently held it over his mom’s arm, slightly suspended above it, but not touching her owie) and make mom’s arm all better!’

‘You know, he could do that.’

‘Dad, then I would have Faux turn his head and cry a tear on her arm to make it all better!’

‘Well, I don’t think Jesus and Harry Potter are in the same category, but that’s a nice thought.’

‘Mom, who did this to you?….’

Dear Jesus - Part 1

2011-05-20T09:13:00.000-07:00

For the past few weeks, building up to his birthday, Ethan has been very focused on wanting to seek out a certain person and ask them for specific things. Not just anything, but special requests, that only this one person can accommodate.

That person is Jesus...

...as in The Christ, our Savior, 'ha Yeshua Massiach, Jesus the Messiah.'

On Monday, Ethan came home from school with one of these special requests. He asked if he could write a letter and ask Jesus for something special. I had him grab a piece of paper and we sat down and wrote a letter to Jesus.

Enjoy :)

Dear Jesus, 

Close your eyes and use your imagination and give me a Loki Mask in the movie THE MASK of Jim Carrey and Camron Diaz with colors on the front and back and a green glowing thing on the back to move to the left of the Loki Mask with powers to spin around and say smokin. 

Love Ethan Kornegay

Happy Mother's Day?

2011-05-08T10:26:00.007-07:00

AKA: WITH SIX YOU GET ~~EGGROLL~~ HEARTBURN

If you ever start feeling like you have the goofiest, craziest, most dysfunctional family in the world, all you have to do is go to a state fair. Because five minutes at the fair, you'll be going, 'you know, we're alright. We are dang near royalty.' – Jeff Foxworthy

Yesterday, we went out to dinner as a family to celebrate Mother’s Day. It was a rare occasion that we 1) were all together on a weekend, 2) had enough nerve to go out to dinner as a group! But, being a weekend of celebrations we decided to try it. (Note to self – never play the lottery, my luck is awful, and my hunches are more like hunchbacks!)

And so, we ventured out. We climbed in the car, turned on Wicked on the CD player so we could all sing along, and headed east on the highway; the volume set precisely to 9, apparently 10 was just too loud today, though Emma asked for it to be on 12 since she couldn’t quite hear it.

We made a quick stop at one of Ethan’s favorite restaurants and ordered a large supply of chicken nuggets. Our confidence in the outing soared a few points as we remembered to ask for a goodly supply of the Nectar-of-the Gods. When we looked in the bag, our confidence in the outing reached even greater heights; the Concierge of the drive-thru window had surpassed our request with a more then ample amount of extra ketchup packets. We were in high cotton!

We arrived at our favorite Asian restaurant, and waited while the kids examined the menu on the wall for several minutes, contemplating the quintessential flavors of Asia. Eventually we had a consensus and made our way to the register to order.

‘What can I get for you tonight?’

‘We would like 2 orders of the Vietnamese Chicken Salad Rolls, the Chicken Pad Thai, Mongolian Beef with brown rice, and Minced Chicken with Lettuce Wraps…’

‘Any drinks?’

‘Please, six drinks…’

‘I just want water’

‘…Make that five drinks, and a water.’

‘That’ll be one arm and a leg…Debit or Credit?’

‘Credit.’

‘I’ll need you to sign your life away, as well as the indemnity agreement releasing the restaurant of all liability in the actions of your family over the next thirty minutes.’

‘That reminds me, can I also get a side of dumpster fire and a train wreck please!’

‘Certainly, we offer those like our fortune cookies, free and by the handful, help yourself!’

We got our drinks, found a table large enough for six, and strategically positioned our selves. Evie pulled the chicken nuggets out of her purse; I grabbed a plate and began emptying the contents of ten packets of ketchup in preparation for the introduction of the chicken nuggets. Morgan’s plate arrived first, then the chicken salad rolls. As the ketchup duty continued, we adjusted the empty plates, shuffled drinks, handed around napkins, forgot straws, returned again for forks, and made room for more food to arrive. The remaining dishes arrived just as the last ketchup packet was emptied and the foil containers wrapped in a napkin and set it aside.

It was now time to get up and move Ethan. He had been seated next to Emma, and this apparently was just too funny, for he couldn’t sit still, and could not focus on his dinner to even give it a second thought. Not wanting the chicken nuggets to get ‘too hard,’ I moved quickly and had him slide over into my chair while I sat Twinkie between the two of them. It worked, his focus returned to his plate, a few more reshuffles of the dishes and we were ready to eat, except for the fact that Ethan then realized the chicken nuggets are no longer shaped like crowns!

‘Is it illegal to assassinate the Burger King?’ I asked.

‘Yeah, probably.’ my wife responded.

‘He buddy, they just changed their shapes, they are still the same chicken nuggets. Try them and see if they taste the same.’

Ethan then flaked off a small piece of crust from the nugget, put it to his lips, and said, ‘Oh, yeah.’ That was close!

As Ethan downed eight of his nuggets, the rest of us ate our entrées. Ethan’s chicken became too hard, as the others became full. We grabbed to-go boxes, packed up our leftovers and sat, in silence. Morgan asked why we were still sitting there. Simple, I replied with a smile, ‘I’m finishing my dinner’ then took a few slow drinks from my soda, enjoying the precious few seconds of quiet and solitude we had somehow found—the weekend had been hectic, sleep deprived, exhilarating, emotional, and visited with coughing fits (for Evie), and busier then normal—and I was going to savor every last second of the solitude since it wouldn’t last long.

We drove to the department store, next door, to grab a few last minutes items for Mother’s Day, such as a Bundt pan, nighttime cold and flu medicine, a cough suppressant expectorant, chocolate, and a meltdown. Actually it was not a real meltdown, just the precursor build up to a meltdown.

At first Ethan and I held hands as we shopped. As it grew time to checkout and leave, Ethan suddenly decided he hated me, and wanted to hold ‘Mom’s hand.’ That lasted two seconds, until Emma touched him, and Michael returned from his walkabout. We walked, back to holding hands, and made our way to the front of the store, stopping only briefly in the candy aisle for a last minute gift.

As we checked out, the Team Member asked for Evie’s drivers license.

‘Not sure either of us is over 18? I can see how you’d get confused’ I said with a smile.

Obviously we were 18, she just needed to identify us in case we decided to go out to our clandestine lab with the lone box of expectorant and begin cooking meth, so we preferred to think of it as a compliment to our youthful appearances!

We exited the store and made our way to the car. It appeared we had avoided the meltdown, and were now on our way home, sanity in tact. I opened the kid’s door, ensuring Ethan and Emma both got inside, then walked around to get Evie’s door. I reached her just in time to watch her sit down and reach to close the door.

‘Did I just get my own door?’

‘Really?’

‘Sorry, I didn’t even realize it.’

I walked back around the car, and got in, we backed out, began pulling away, and ran out of luck within feet of our parking space.

‘Uuuuuuuuughhhh! Michael just blew his germs on me.’

‘Stop!’

‘Don’t touch me.’

'Dad, make him stop.’

‘Enough!’

< Crying begins >

‘Knock it off!’

‘I didn’t blow germs on him.’

‘Michael you blew in his face.’

< Crying intensifies >

‘He hit me in the stomach.’

‘I don’t care, holy cow…!

(Evie begins a coughing fit, while driving – which by the way we haven’t even gotten out of the aisle we parked in!)

‘Don’t wipe your boogers on my shirt!’

‘Listen up! Ethan stop! Morgan get over it, they’re just boogers…’

‘That’s gross!’

'They’re twelve year old Autistic boogers, get over it!’

‘Actually fifteen!’

'I don’t care if they’re twenty-five-year-old Autistic boogers get over it. Ethan quit it. Michael, don’t look at him, don’t blow on him, don’t respond.’

‘I just said a prayer for Mom to feel better!’

'Thank you Emma. Dear do you need me to drive?’

We pulled over and we exchanged seats. Evie’s coughing fit continued, as did the meltdown.

< Piercing Scream >

‘Don’t turn up the heat!’

‘They’re trying to kill me.’

‘He keeps turning up the heat.’

'Ethan quit touching the air conditioning.’

‘That’s because, they’re trying to make me frozen, because, because, that means I can’t move!’

‘Ethan, put your legs up here… (I direct Ethan to put his legs on the center console, away from the blowing air) …and I’ll keep them warm. (I lean over so my arm covers his legs, as Evie’s coughing fit worsens. She takes my hand and squeezes as the cough scratches at her throat.)

< Blood curdling scream >

‘Ethan, I need you to hold my arm. Can you hold my arm with both hands? I need you to squeeze my arm. Thanks!’

‘Dad turn it up, I can’t hear it!’

I let go of Evie’s hand to turn up the volume on Wicked (that’s ironic!), but apparently to the wrong level.

‘Dad that’s too loud.’ < crying recommences > ‘Dad, skip this song!’

After getting the right Wicked song to the right level on the radio, we begin a modified session of deep pressure therapy as I pressed on his legs with my right arm, giving both pressure and warmth, while he returned the deep pressure hugs by squeezing my arm. For several miles the screaming, crying and deep pressure therapy continued.

All the while we drove I was performing a modified pose of Crying On The Inside and Poker Face (aka: Dumpster Fire or Train Wreck) and had not quite reached that level of consciousness where the laughing begins. Then I heard it, to my astonishment somebody in the back seat had, like me, been practicing the very same Yoga pose. A slight giggle sounded from the back, it was Morgan, and her laughter began to build. With her assistance, I reach Nirvana and began laughing as well. In time more laughter erupted from Michael, and the meltdown eventually dissipated into the night air.

We drove on, me unable to see out any of the mirrors—I was leaning so far over the console to keep Ethan’s legs warm—my hand numb from Evie’s squeezing. We must have looked like a cross between The Grapes of Wrath, and Planes, Trains and Automobiles. Evie’s cough eventually faded as did the laughter and was replaced by an overwhelming feeling of peace. As we pulled up to the house alive, and all in one piece, I silently thought,

‘We made it we ARE dang near royalty!’

WORLD'S BEST SISTER

2011-05-06T06:38:00.001-07:00

This semester is almost over, and we recently received a progress report on Morgan's STIM 657 class. I am happy to report she is doing great, and was honored as an

Individual who shares an undiminished identity, who puts aside fear and exclusiveness and adapt to reach a commonality of goals to create a place where you are treated as a whole despite differences, where you gain a sense of competence, learn tolerance and hold pride for oneself, each other, the community and throughout life...

Ethan’s 1st period teacher nominated her for the award. Here is an excerpt of the nomination proposal:

Morgan is one of the most caring students I have ever come into contact with. She is her brother's peer tutor in 1st hour...She is always there for him helping him. She goes out of her way to always help her little brother...If I could find an award that said, 'World's Best Sister,' I would get it for her. I grew up with a special needs sister and I just love to see someone else who goes out of the way for their special needs sibling. It just melts my heart. Morgan is beyond a model student...and she should be recognized for that.

STRATEGERY

2011-05-01T09:50:00.000-07:00

For the past four years Ethan and I have participated in the Law Enforcement Torch Run for Special Olympics. Each year we have completed the same three-mile section of the run, and each year we have completed it on a bike. First we did it on a bike with a bike trailer, where I could pull him along behind me. As he out grew that we bought a larger tandem bike.

Other then our mode of transportation, each year has been identical.

- Ethan gets out of school early

- We meet at the starting area

- We put on our Torch Run t-shirts and bike helmets

- We ride around the parking lot to warm up

- We take pictures

- The torch arrives and it is passed-off to our group and we begin our leg

- We meltdown!

The only other thing different over the past few years was the timing of the meltdown. Initially it didn’t start for several blocks. Last year it started almost immediately.

The cause of these meltdowns hasn’t been elusive, as some meltdowns have been, I have always known why we do so well building up to the bike ride, and then suddenly shift gears into a full blown, ‘Dad, I want to kill them…We’re beating you…Uuuuuuuuughhhh...Yellow Car!’ kind of a day. As of Friday, we had just never found the right solution.

Like I said, we have always known his reason for the ‘Dad, I want to kill them…We’re beating you…Uuuuuuuuughhhh...Yellow Car!’ moments. It was always that he HAS TO BE first, it’s just that simple. For instance:

- After family prayer, he HAS TO BE the first to kiss his mom.

- If we all just drove home in the car he HAS TO BE first inside the house.

- If we are driving home from church in separate cars, the car he is in HAS TO BE first in the garage.

- Etc., etc.

This normally does not cause too many problems except for the one time somebody inadvertently entered the house before him. Tears, screams, and forbidden words echoed through the garage. He asked (really screamed) that we all had to exit the house and get back in the car. For the sake of peace we obliged. Everybody returned to their seats in the car and we shut the car doors. As soon as the last door shut, his opened and he shot to the kitchen door. Before any of the rest of us could even reach the door to the house, he was inside, through the front room, and running up the stairs. Life was now good, again!

Recently he has switched a little from feeling the need to always be first. It is manifested in only one small act, but it is change, and we’ll take it, even if it is only one thing. Of course with it comes the same caveat. The new change is always met with the same level of obsessive-compulsive compliance as its predecessor, and if violated still brings about a nearly identical tirade.

Here is the new rule: Dad has to buckle his seat belt first, before anybody else buckles up.

This doesn’t matter if I am driving, a passenger, in the front seats or in the back. I have to buckle first. For years the unspoken (more like weeping-wailing-and-gnashing-of-teeth-enforced) rule was that he and he alone had to be the first person to buckle his seat belt in the car, so why the sudden change? According to Ethan it is because,

‘Dad is the leader of the family!’

As a result, we accept his sudden rule change, and when violated, we suffer the consequences until we all unbuckle and I buckle my seat belt first, and then life can go on.

So, we assume our best yoga posture and engage The Look often and follow the obsessive-compulsive demands of autism with no solutions in sight, just acceptance or consequences for their violation. After all it’s really about finding peace, and if peace can be found by surrendering to them, oh well, we’ll take it. That doesn’t mean we are sequestered in our war room, plotting and planning different offensives, and approaches to these attacks. In fact I think we do very well.

On Friday our careful planning paid off. Some may call it a bribe, others a reward system, I simply call it STRATEGRY!

I decided to offer him two large Hershey Chocolate bars, a Pepsi, and a yellow tape at the finish line, in exchange for no ‘talking ugly.’ He agreed. For two days we reinforced the plan we reminded him that if he did A, B and C, then he would get the chocolate bar, Pepsi, and the yellow tape at the finish line.

It started off perfect!

So, how did the rest of it go? Let me just show you…

NONPAREIL

2011-04-27T22:09:00.000-07:00

If you’ve met one person with autism, then you’ve met one person with autism – Stephen Shore

They say style is expression; it is how we communicate ‘our inner being outwardly. This includes all of our thoughts, emotions, interests, and values. Everything on the outside is merely a reflection of what’s on the inside.’ With that being said, when I refer to autism in terms of this family, what I am really addressing is Ethan’s style of autism, in other words his way of expressing his autistic tendencies, characteristics, traits and personality.

There are technically five official diagnoses for autism: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), Asperger syndrome, Childhood Disintegrative Disorder and Rett Syndrome. Autism is classified as ‘a spectrum disorder, meaning you can be a little autistic or very autistic.’ The term spectrum—think rainbows or prisms—is used because it illustrate an array of ‘developmental delays and disorders that affects social and communication skills and, to a greater or lesser degree, motor and language skills. It is such a broad diagnosis that it can include people with high IQ's and mental retardation - and people with autism can be chatty or silent, affectionate or cold, methodical or disorganized.’ A diagnosis of autism simply places one firmly on the variegated scale that is autism.

Playing off the idea of the colors in a spectrum of light, giving no specific characteristics to one color or another, some on the spectrum of autism seem to reflect different colors in the array. Some on the spectrum have an assortment of all of the colors, others tend to be shaded more to the blues, indigos and violets (colors which incidentally have higher light wave frequencies), while others reflect more red, orange and yellow (which have lower light wave frequencies) in their demeanor. One might reflect blue and violet, but be completely absent of any hint of indigo, or say blue and orange, skipping all other hues completely. To make matters even more elusive two persons may reflect the same colors yet one may be diagnosed with severe or low functioning autism while the other is deemed high functioning. These terms (severe, mild, low functioning or high functioning) when used in conjunction with Autism aren’t really diagnosis or official terms. They are more generalities that make it easier for one to understand the limits or abilities of that individual on the spectrum. ‘When people use the term mild autism they are referring to individuals whose symptoms fit an autism spectrum diagnosis, but who has strong verbal skills and few behavioral issues. Those individuals may, however, have significant problems with social communication. They may also have problems coping with too much sensory input (loud noise, bright lights, etc.).’

I understand the inherent dangers and risks of self-importance or despondency that can come from comparisons, and make this comparison only to establish a point of reference for the matter as a whole. During April, PBS Newshour ran a six part series entitled Autism Now, by Robert MacNeil, coincidentally a grandparent of a six-year-old grandson with autism. In segment five, Robert MacNeil interviewed the Hamrick family of New Jersey, whose twenty-year-old son, Zach, has autism. As I watched Zach interacting with his family I said, ‘This is the closest thing to Ethan's 'style' of Autism I have ever seen.’ Consider the following as I make a side-by-side comparison of the two boys. The following details about Zach come from the show’s transcript (emphasis added).

1) No Sense Of Danger / Can’t Be Left Alone
‘In 2009, Zach completed New York's Nautica Triathlon…Yet he was never more than a few feet from his father or his cousin, because Zach has no sense of dangers in traffic and so can't go out on his own. ‘If we come to an intersection, he doesn't know what those cars are going do, when he needs to stop, so he's dependent on my telling him: Turn right, Zach, turn left, turn left again. Go fast, go, pass the car, go, right side, go, go, go, pass it. Yes.’’	Ethan has no sense of danger. As for bicycles, he and I ride everywhere together on a tandem bike, with me at the brakes and the handlebars. Unlike Zach, who will listen to verbal commands from his father or cousin, Ethan takes several commands and requests before he complies, if he does at all. If he sets his mind on something it can be very tasking to deter him, or redirect him. Even in the elementary activity of bike riding, such delays and the lack of regard for his surroundings is equal to alcohol impairment in the threat they pose. Thus, we have not taught him to ride a bike on his own.
‘Zach still has lots of issues with understanding language, with communicating. He can't be left for long periods of time by himself. So, although he's made tremendous gains, Zach continues to require services… [He] unfortunately doesn't really understand danger. You know, we had an incident not too long ago where accidently something was left on the stove. When I came down the house was filling with smoke. And Zach was sitting by the computer on his chair, spinning in a circle, slowly, not paying any attention at all to the smoke, the smoke alarm. He was just in his own little world.’	Ethan doesn’t cook, or heat up his own food, so we don’t have that to deal with. However, certain compulsions, occasionally, seem to have an overwhelming influence over Ethan. These cannot be measured, or anticipated. The compulsions come unexpected, and leave us jittery. They are the fixations or temptations to light matches—whether in his room, under the blankets on his bed, or in the kitchen—or play with sharp objects, such as knives. The dangers in these urges are obvious. In his little world knives are simply small swords. Matches are what light candles, and candles represent birthdays, which are fun!
2) Focused And Meticulous Attention To Certain Activities
Zach loves drawing. At the age of seven he drew and colored a ‘Thomas the Tank Engine. -- tapes papers together and draws until he gets the desired length. Colors it and cuts it out.’ The drawing ended up being approximately six feet long.	Ethan loves to draw, cut and pastes images from the internet, cut out images from DVD inserts or magazines, affix them to paper, print them out, or laminate them with layers of tape. Once laminated, he cuts them out in their various shapes, and if he feels the need then affixes them again to another piece of paper which is then laminated once more with more tape. He presently has a stack of paper nearly eight inches thick of images he has either drawn, cut and taped, or printed off the internet. He has one piece of cardboard which has at least four layers of images, and eight layers of tape, which is nearly six years old.
3) Obsessive Memorization And Repetition Of Movie Dialogue
Zach possesses a need, ‘even obsession,’ to ‘memorized dialogue’ from movies. ‘He picks [the video] out and he watches it over and over and over and over again. And whether we like it or not we end up having all of the lines memorized. It's…the closest that we'll ever get to sitting as a family and having a round-table discussion. It's the most interactive thing to do with Zach that I've found.’	We constantly have to replace VHS tapes, DVDs, and DVD players which become unusable, scratched, or fail from the incessant rewinding which occurs while he watches a movie over, and over, and over, memorizing it as he goes. The scripts are filed away in his mind, to be used as needed to carry on conversation. Movies not seen for years are still available for replay on his mind’s stage when ever the need arises. This stash of video images becomes his basis for carrying on conversation with family members.
4) Age-Inappropriate Actions
‘Something I worry about is people misunderstanding him because he looks normal. And he acts pretty normal most of the time. So I always worry, like, when he goes into the bathroom to use the urinal, he drops his pants down all the way. I'm afraid that one day someone's going take that the wrong way. It's all of these little what ifs, what if, what if, what if.’	Up to the age of thirteen, Ethan would use the urinal, and drop his pants to his ankles. Before he was not tall enough to reach the higher urinals, he would do this while standing on my feet. Sensing the pending issue we were able to reinforce the use of stalls for all toilet activities in the bathroom. At age 15, if he stands in the stall to use the toilet, he still drops his pants to his ankles.
5) Language Delays – Abstract Questions
MacNeil: Almost Finished? Zach: Yes. MacNeil: Do You Like The Job? Zach: Yes. MacNeil: Do You Find It Easy, Or Is It Hard? Zach: Yes.	We struggle with the “Wh” questions. Who, What, Where, Why and How are difficult. Ethan, if the question is simple (Yes/No), can respond appropriately. When the question becomes more complex, more open ended, you never know what you will get. Most of the time you get, ‘I don’t know dad.’

Other characteristics, when viewing the video, strike all too familiar chords with us. Zach’s tone of voice, inflection, and robot-like responses, unless he is quoting from a movie then his recital mimics the movie almost flawlessly. His gait, his physical mannerisms closely resemble Ethan’s. Again, this is the closest thing to Ethan's 'style' of Autism I have ever seen.

However, and hear is where the discussion was headed in the first place, though the differences in the autistic characteristics are subtle, they are striking enough to create key differences in social, communication, motor, and language skills.

Here two young men reflect what appear to be the same colors of autism yet an intimate examination reveals that of the blue characteristics one is more Cornflower then Blizzard Blue, the violet tendencies appear more Glossy Grape then Lilac Luster, red distinctions are more Red then Razzmatazz and green traits more Aquamarine then Cerulean. For instance, Ethan, based on my viewing of Zach in the video, is more advanced with his communication, whereas Zach is clearly more advance when it comes to taking care of his personal needs (i.e., fixing, including cutting up, his own dinner). Zach is more advanced in that he can be given commands and will follow quickly, where Ethan is more fixed in his own world and requires repeated promptings to adjust his actions. What at first appeared only as faint differences in tints and shades in the characteristics on the spectrum are actually drastic differences in the style of autism exhibited.

So the next time you hear somebody speak of the Autism Spectrum, or see the multicolored puzzle piece logo, picture a rainbow. From afar they may appear to be identical, but closer examination will reveal the subtle differences. The subtle quirks, eccentricities, or characteristics of autism express on the outside a reflection of the individual on the inside; not mimeographed clones, but an individual who is absolutely one-of-a-kind!

THIS IS (STILL) THE PLACE!

2011-04-24T20:37:00.001-07:00

STOP!

Don't panic, you are in the right place!

Do not pass go, do not collect $200 dollars!

No, this is not the Twilght Zone, or the Outer Limits, you are in the right place.

I simply changed the name. It is the same family, the same me, and the same viewpoint. The only thing that has changed is the name.

The name is derived from a phrase Ethan uses to describe the resurrection of his baby brother. I have always loved the phrase, and after today, I decided to use it more often.

'Humor, time, faith, vision, and love—these have been given to all of us to use and to develop. As we do so, our perspective broadens, and life comes into a truer focus.' - Carol B. Olsen

Please Watch! - It's Autism Awareness Month!

2011-04-22T18:56:00.000-07:00

Autism Now - a PBS Newshour special report

I am at a loss for words! This is the closest thing to Ethan's 'style' of Autism I have ever seen. Listen particularly to his sister as she discusses her worries about her brother. LOVE HER!

An Axiomatic Hydra-matic

2011-04-21T14:27:00.000-07:00

Our minds have a marvelous capacity to notice the unusual. However, the opposite is true as well…because we see things so often, we see them less and less…Every day is a new canvas—a new opportunity – Joseph B. Wirthlin

In the 1930’s General Motors developed an automatic shifting transmission. It was coined the Hydra-Matic or Hydramatic. A purpose behind the invention (it is considered one of the most important innovations in the history of the automobile) was to reduce the need to shift gears while driving, or at least eliminate the regular need to shift gears. You still need to shift from Park to Drive, or if necessary from Drive to Reverse, if you’ve gotten yourself in a pickle and need to back out, but the constant need to shift gears as your speed changes, or as the road grade changes, has become obsolete, for the most part.

Many of us, it is human nature after all, take such things as shifting gears for granted. We get in our car, we make that initial shift to get the car started, we may even shift once more just to send us off in the right direction, but once there, shifting is forgotten. Did you realize every time we stop and start again from a stoplight that our car shifts three, sometimes four times to get us back up to speed? And when we slow, or come to a stop our car shifts again another three or four times. How many hundreds of times does your car shift between your house and your work? How about between your house and Disneyland? The beach? Downey, California? Logan, Utah? I have no idea, I’ve never cared to know, I’ve just been grateful that it did!

Last month our $100 car finally died. It was a great car while it lasted. It was a white 1987 Oldsmobile Calais with 68,000 miles on the odometer, and red velour interior. Morgan described it as Sick (I think that means awesome) and dropped the O calling it the LDSmobile. It was a great car, while it lasted.

Well, the car didn’t actually die, but it was on the verge. I had noticed that Thursday that I was staring to experience engine trouble. This caused me serious reflection and concern, because it would cost money; more money than the car was worth! The next day my oldest boy drove it to work. When he got home he announced that the car was overheating. I let it cool down then started it. I instantly knew why it was overheating, in idle the engine was racing at high speed. I knew where this issue was coming from, and I knew it would cost four times the purchase price of the car as I had fixed the problem once before.

We decided it was time for a new car, and we would see what we could get as a trade-in. As I got in the car and began the drive down to the dealer I suddenly became intently focused on how many times my car transmission shifted. The car was not just overheating the transmission was failing. I could shift exactly two times—you heard right I shifted—the automatic transmission wasn’t working. I manually had to shift gears and then I could only get it into second gear.

Sometimes something awkward, or even serious, needs to happen before we stop and reexamine our lives and look at things from a different point of view; stop taking things for granted. I can attest that driving 50ish miles per hour, in second gear, on the freeway, the hazard lights on your dashboard flashing steadily, is one way to do just that. There is something about it that shifts you into introspection. The loss of my Hydramatic gave me reason to be axiomatic!

Other recent changes—all to occur within the next few months—have made this feeling even more pronounced in me as I consider Ethan. Let me explain.

Ann and Rob, my wife’s sister and her husband (ever notice the tendency to list the direct relative first in such pairings, or did you take it for granted that you did?), announced that their family, and their four wonderful kids, will be moving to the mid-west!

This will affect me. I know it will affect my wife, it already has, and they haven’t moved yet. My wife still recalls the loneliness she experienced when her big sister went away to BYU in the mid-eighties. But we get used to those thoughts, we store away that empty feeling, and look forward with anticipation to a reunion. But those are abstract emotions; can they be explained in pictures?

Ethan is a kid who thrives on routine, how do we explain this to him? He loves Ann and Rob, he loves their kids, loves their house, and he loves their toys. Will he understand? When driving on the freeway, Ethan can tell where we are going miles before we get there just because of the route we take. If we happen to have been heading in the same direction, but weren’t intending on going to their house, he immediately recognizes when the routine changes.

‘I want Annie. Uuuuuuuuughhhh! Mom, we need to go that way,’

‘Mom, you forgot to turn!’

So, how do we tell him they aren’t there anymore? He’ll know the house is there, but how do you explain that they aren’t?

For the eighteen months Ethan’s grandparents were serving as missionaries in Hong Kong, he prayed for their safety in every prayer. He continued to pray for them ‘on their mission’ for two more years after they returned home. Eventually his prayer changed and he simply adjusted one word: ‘on their mission,’ became ‘off their mission.’ But that took months and months to bring about.

Ethan saw his grandparents a little more then quarterly; while they were away he saw them every nine months. What happens when it is somebody he sees more often, and they are gone longer? What will he do when his brother, his roommate everyday for the past 5,542 days—give or take ¼ of a day due to leap years, etc.—leaves for the Philippines? What will it be like when his big sister, his Guardian Angel from high school, goes off to college, or gets married? Will there be something he can equate to their being gone? Will he understand that people grow up and move on? Will he feel sad?

I know he is aware of sadness, but not like most people understand it. Sadness, in his mind is linked to a visual image. The image is a scene in the movie The Land Before Time where Little Foot’s mother dies. I only know it is that visual image because of the occasions when we would find him suddenly weeping for no apparent reason. After several attempts to coax ‘What’s wrong?’ out of him, he would simply reply, ‘Little Foot’s mother.’ We have identified the image, but we don’t know what that image really means to him, so we don’t know what to expect when either his brother or sister leave.

Last week he asked if he could buy a certain toy at his favorite store. My wife reminded him that his birthday was coming up, and we could get it then. ‘How many days is my birthday?’ he asked. She replied, ‘twenty-one days.’ What came next startled my wife. He cried. No, he wept. His sobbing was as deeply moving as when his balloon broke. He was inconsolable. Had he identified his balloon’s demise with Little Foot’s mother? Did he consider twenty-one days to be comparable to that? If three weeks were this traumatic, what would two years be like? Certainly we will miss Michael, but will Ethan be like this when he leaves? If so, for how long?

That day I considered other seemingly more pressing things that I have been taking for granted. What will he do for seminary next year? His sister took him every morning, and sat with him, then walked him to his first class. Will somebody be there to replace her? What happens if seminary moves from the school to the new church building down the street? How will he get to school from there?

As those questions appeared panoramic across my mind, I never even felt the shift or the increase in momentum. My mind accelerated, each thought increased speed exponentially. The colorful landscape, once distinct in the daylight, suddenly turned to a blur; the leisurely drive swiftly became a road course of switchbacks, hairpins, and s-curves. My mind persisted. Will I ever be able to teach him how to ride a bike? Will he ever be able to be left home alone? Will he ever be able to walk to the store on his own? Will he ever understand money? Will he be able to have a job? Will he ever go on a mission? Will he ever get married? Will he be able to move out of the house?

My mind raced so quickly through those thoughts I never noticed the distorted landscape withdrawing. Smooth concrete walls closed in, as light faded from around me. Speed was irrelevant in the darkness with nothing to give proportion; distance and time deferred. Will we need to file for guardianship on him? How long can insurance cover him? How long can he be claimed as a dependent for taxes? Will my wife and me ever be empty nesters? What do I do for retirement? Do I find a second career, one that he and I can work together? If he can’t live on his own, when we can no longer provide for him, will our other children be able to?

Suddenly, before me I could see a faint glow in the distance. It was light at the end of the tunnel. The tunnel walls fell away to the open air and landscape. Its original beauty brightened by the darkened passageway. Clearly, as clearly as the sun now shown, this thought dawned.

‘I don’t have all the answers to the questions that race through my mind immediately, there are many more to come, and that’s okay.’

I consciously slowed down, and shifted to lower gears intent on taking in the immediate scenery while it lasted, appreciating the shifting of the gears. My wife, knowing my thoughts, turned to remind me, just as Ethan climbed onto the chair to cuddle on my lap, that we are well equipped to deal with whatever our journey had to offer, and we determined we would enjoy the journey.

So we traded-in the LDSmobile (FYI, I got my $100 bucks back) and bought a new car, a Honda. It's roomy, economical, and best yet, provides excellent forward vision and handling. What's more, a bigger chair has replaced my old desk chair and he and I can sit together comfortably, with room to spare.

So for now, when life gets difficult and we need a place to feel safe, both the car and chair are a perfect Fit. :)

An Open Letter to a Friend

2011-04-18T16:41:00.003-07:00

Years ago my wife and I traveled to Hong Kong to visit her parents who were serving as missionaries. During our stay, we had several opportunities to ride on Hong Kong’s mass transit system of trains, buses, escalators, and taxis. Over every door on the train was a warning and at each stop, as the train doors opened, a beautiful female voice with a lovely Asian-British accent repeated the written warning and announced over the loudspeakers, ‘Please mind the gap.’

The ‘gap’ she was referring to was a small space, just outside the base of the door, between the threshold of the train and the platform. It was a tiny area, spanning only about two inches. But those two inches were enough to catch your toe and trip you up on your journey. As I listened to that voice repeat that phrase during the week, I was struck by the significance of such a little matter.

Each of us deals with gaps or obstacles in our life. And we all face them for the same reason, they are the morals of our stories.

‘Sandwiched between [our] ‘once upon a time’ and ‘happily ever after’, [is] opposition in all things, for without it we could not discern the sweet from the bitter…adversity teaches us things we cannot learn otherwise. Adversity helps to develop a depth of character that comes in no other way. Our loving Heavenly Father has set us in a world filled with challenges and trials so that we, through opposition, can learn wisdom, become stronger, and experience joy.’ (Uchtdorf)

Autism happens to be a major conflict in my family’s story. Your story, though similar in some respects, will be different; your story may involve conflicts like Autism, but it might not. It might involve premature deaths, cancers, broken homes, unemployment, disease, or a myriad of sundry other conflicts or characters. This much I do know. My story, my family’s story, is directly proportionate to yours, whatever it may be, and each story is tailor fit to do one thing: bring each of us home, happily ever after with our Father in Heaven. That is of course, if we can just learn and apply the morals of the story.

I won’t lie, I will be glad when there are no more meltdowns, no turmoil, and no deep pressure therapy. I won’t miss finding the end of my phone charger cut off, or having sticky tape melted to my dress socks. I won’t miss spit on the carpeting, or cheeseburger being spit in my hands. I won’t miss pat downs, searches, frisks, or urine in the trashcan. But I will miss his need to hold my hand, my need for a bigger chair, the joy he finds in rain, those quotes he conjures up out of nowhere that seem to fit perfectly to the situation, or those… Well, you get the picture.

You might feel sorry for me because of the challenges we face. Please don’t, I wouldn’t trade you for your challenges, even if you paid me. Besides, they wouldn't fit they aren't interchangeable. I love my story. Sure, certain chapters are a little rough, but nothing worthwhile is ever gained easily. Ethan describes this principle best when he says, 'That's because Emma is trying to kill me!'

So, I will continue to write about my story. I will write with the hope that you can find some ‘much needed humor, inspiration or just reminders of why we’re here.’ And, if I can just apply the morals of my story, learn patience, keep repenting, learn to apply the lessons from the opportunities as they come, and keep finding joy in the journey, then maybe, just maybe, in the end I will get to hear something like this:

‘Dad, what do we say?’

‘I don’t know Ethan, what do we say?’

‘Dad we say, ‘Mission accomplished’!’

Storms - a Paul Harvey reprise

2011-04-16T06:54:00.000-07:00

An early spring storm had blown into town, bringing with it the gloom of gray skies. Cooler temperatures cut the unseasonable heat from the week earlier; thunder claps replaced the buzz of untimely air conditioning units. Wind gusts danced a steady rain across the concrete and asphalt, while moments of hail were interspersed with one moment of peace. Confined in the house by the inclement weather, I walked down the hall to check on Ethan. He was playing in his room as I peeked in to see him sitting on his brother’s bed. The blinds were drawn open, and he sat before the window. Leaning forward, resting his chin on his propped up hand, he gazed out the window, watching, mesmerized, by the rain drops that danced and splashed against the glass.

Struck by the scene my mind reflected on the tranquility of it all. I captured the moment with my camera then sat down to capture, as best I could in my limited poetic way, the moment in words.

As he watched the rain I couldn’t help but feel grateful that at least there was something that brought him relief from the constant yoke of Autism—even if it is only temporary.

Within the hour the clouds cleared to reveal a double rainbow. With a renewed vigor Ethan jumped from the bed and ran to get my wife and me.

‘Everyone, look a rainbow!’ he cried as he ran into our room.

He darted off again only to return instantly with the same declaration. As we moved towards the window his next exclamation brought us as much pleasure as the rain and rainbow brought him.

'Dad, I feel a song coming on!'

And now you know, 'The rest of the story!'

Higher Education

2011-04-13T19:48:00.000-07:00

Experience: that most brutal of teachers. But you learn, my…do you learn — C.S. Lewis

STIM 657 – Autism, a Family Diagnosis

As a part of the continuing education program of the School of Family Life, a new life long learning certificate is being introduced. The advanced course is offered in a cohort environment. In the context of adult learning and development, cohorts emulate, as closely as possible, the family situation where a group of individuals, armed with a common objective, join together to develop the knowledge, skill sets, understanding, and practical application standards of the syllabus. Throughout the course objectives the members of the cohort support each other in the process of learning, cultivating concern for, and about, each other’s development. Through the use of the cohort group, individuals can experience growth and development supported and challenged by the individual academic levels and characteristics of each member of the group. Though taught in the group setting, completion of the course depends on the accumulated success of the individual member, and not the group as a whole. Certification will, most likely, occur at the conclusion of the student’s mortal enrollment.

The course syllabus may be tested in controlled laboratory or spontaneous field environments. Group members will be required to take on differing roles during the labs and fieldwork; such alterations provide students with the opportunity to apply classroom knowledge in a clinical setting, and from a variety of perspectives. The anticipated fieldwork experiences are designed, as much as chaos can be, to strip the soul of the student of pride, enhance the principles of humility in the individual, direct the individual’s thoughts heavenward, and spiritually enrich the individual through observation and participation. Such an environment provides students with an in-depth experience that can be obtained in no other way.

My family enrolled in this course in 1996. We are not academically perfect, I’m not sure we could even give what we do a grade. Certainly we have had our share of labs and fieldwork assignments. We have studied hard, poorly at times, and ended up pulling occasional all-nighters. We’ve inadequately managed time on occasions, failed to study certain material thoroughly, tried to get by on our personalities, and yes, we’ve even failed to read directions at times. I think however, that as a family, we are doing okay.

I won’t assume to report how I am doing—if you are reading new stories I write, then I am still in therapy—but let me give you my assessment on the kids in the cohort...

One afternoon, my wife took the kids to the mall. It was summer time, Ethan was out of Extended School Year, and my wife decided taking the kids to the mall could be a reward and she could handle it; after all she had Michael and Morgan there if necessary.

Predetermined rules and guidelines were explained: there would be no buying only looking. Ethan was in agreement and so they ventured in.

We are firm believers in that age-old saying,

‘The best laid plans of mice and…SQUIRREL!’

In the world of Autism the weather can, and normally does, change quickly. Within seconds of entering the mall the environment began pressing Ethan's system to overload. The pressure continued to build as his desire to have a small ball became consuming. My wife tried all the usual diversions to diminish the surging emotions, but it was no use.

Sirens sounded, as his nuclear core melted. They escaped from the store into the mall and headed to the nearest exit. Flailing arms and legs were ducked, and avoided, as my wife patiently exited the mall to the parking lot, Ethan writhing the whole way. The only things more conspicuous then the need to find the car were the stares of passers-by as they avoided the wild scene, keeping a safe distance from the fallout. Staring, wondering, scores of people passed them by, never giving in to the human desire to ask if they could help.

In tears, my wife sat on the scorching curb, grappling with her soon-to-be-teenage son, as the late summer sun beat upon them. The older children had secured the baby, and ensured that she was cared for, as they too watched in wonder. Like a drowning man surfacing for the first time, deep gasping breaths were consumed, until reserves were enlisted. They stood. Ethan, only slightly calmer, more from loss of energy then from passion, and my wife made their way to the car. The other three followed, and eventually all were safely inside the confines of the van.

If this mall experiment wasn’t tasking enough, there was another outing a few years later. The family, minus me, was at a local department store. They had headed to the car, when on a sudden, the situation turned from average to awful; Ethan had to use the bathroom. No, he WAS using the bathroom. He announced what was to be inescapable, and in an instant stuck his hand deep into the back of his underwear to stop the event.

I’ll save you the excruciating details, but suffice it to say, that Michael, at sixteen, was suddenly thrust into graduate work in family studies. My wife, Michael and Ethan made their way back into the store. Michael and Ethan headed to the bathroom, while my wife rushed to purchase the needed supplies (underwear, shorts, wipes, therapy, Calgon, etc.) to resolve the incident.

There in the public restroom brotherly kindness knew no equal, as Michael, cleaned, wiped, cleaned some more, and changed his little brother. The soiled clothes were thrown in the bag that had seconds earlier carried the newly purchased garments into the bathroom. Finally the last remnants of the ordeal disappeared down the drain, and the two exited and headed for home.

Flash forward one more year to another location and another test. I was out of town in Tennessee, attending a conference for work. My wife and the kids were together at a department store, buying groceries and other sundry items. Items were being scanned, their prices flashing on the small screen following that familiar beep; the cost of each new item building upon the previous sum. In similar fashion, but clearly buried from view, Ethan’s emotions were also building. Somewhere deep inside, at a point invisible to all around, Ethan’s emotions were accruing at an alarming rate.

Emotional events of the day, some identified, others eternally anonymous, had been mounting. The overwhelming input of those events built, one event after another, and led to an overload on his nervous system. Like tectonic plates, the pressures loomed, just under the surface, until something, some ‘last straw’ sent them over the edge.

With car keys in hand, Michael and Morgan carried Ethan from the store kicking and screaming, as my wife paid for the groceries. Once outside, Morgan helped in getting the car open, as Michael maneuvered Ethan inside.

Before he could get the seat belt on and the door closed, Michael took one for the team. The kick to his side clearly hurt, no question about it. It landed squarely, stealing his breath. Michael’s eyes brimmed with tears, just as onlookers approached to investigate. A member of the ward, spotted them, and made his way over to help. With no available solution in sight the ward member continued on his way as the meltdown raged on in full force. My wife arrived, loaded the groceries, and began the tremulous drive home.

A long distance phone call was placed while en route. I knew instantly what was happening as I answered the phone. The screaming and ugly words nearly drowned out my wife’s voice as she explained the predicament. She handed Ethan her phone and I did my best to sooth his nerves as they drove home. Eventually I was able to get him to respond to my requests. As I had asked, he handed the phone to Morgan, who, following my instructions, began deep pressure therapy. I could hear in the background as she requested hugs from him, ‘Can I have a hug…? No, I need a real hug… Can I have a real hug…?’

Eventually the overwhelming pressure on his nervous system subsided, the hugs allowing his emotions an escape route, and he calmed down. They drove into the garage, their nerves rattled, characters aged with the payment of an emotional toll. Only a slight red mark on Michael's side, and three pair of bloodshot eyes evidenced the ordeal.

Through it all, the kids have suffered occasional bumps and bruises from the required fieldwork. But every now and again they get little reminders that seem to be a 'Balm of Gilead' for all the wear and tear; tender mercies like the one Morgan posted about on Facebook:

Loves having a 14 year old brother that still holds my hand :)

Storms

2011-04-10T07:04:00.001-07:00

Mind darts,
constant, tireless,
this thought, that, another,
body unyielding
rigid, anxious
never knows relief

Storm clouds,

crackles, flashing,
drenched, soaked, dripping wet,
pearls submitting,
relieve, subdue,
he now is at peace.

Backslides and Breakthroughs

2011-04-09T08:21:00.001-07:00

Yesterday was a difficult day of sorts. Ethan had a half-day because of AIMS testing. When his bus stopped in front of the house, his grandmother was here to pick him up to take him to the movies.

That afternoon, when my wife and I arrived home we loaded in the car for errands and grocery shopping. Life was good. No drama, no overloaded emotions, just the pure idyllic anticipation of the coming rainstorm, and the chance to cuddle by the window and listen to the rain strike the screen, and then a game of hide and seek in the house with the lights out, ‘because I was a good boy on my last half-day of school.’

The anticipation of the pending storm, which really wasn’t due to arrive for several more hours, created an incessant need to have our oversized umbrella with us. Lengthy was the discussion of whether or not we needed to keep it in the car or whether we should drag it along with us through out Albertson’s. Once that was finally settled for the unknownth time, there was the need to discuss and decide who got to put it behind the seat—Ethan or Emma?

That debate resulted in Emma’s foot brushing against Ethan’s leg. Being in the back seat of a small car and the uber-close proximity they shared could not have had anything to do with it. Accidental this was not; Emma intentionally “kicked me,” was clear and decisive. It was an act of war! The duration of the protest against Emma for this war crime was nearly twenty minutes. Every movie quote from movies not seen in years surfaced to express, and re-express his frustration. Eventually the protest died down as we got our cart, and divide up into teams to tackle the grocery shopping. Emma and my wife were team one, assigned as advanced scouts, while Ethan and I were assigned to mobile supply and logistics operations with the cart.

We advanced through the produce section, selecting cantaloupes, lettuce, and apples. We nearly lost composure gasping at the price of cucumbers, marked with the Supply and Demand placard reminding us of the devastating frost in parts of the world that creates the privilege of gouging consumers… Then we entered the tomato aisle.

‘Dad, what things are these?’ as he pointed to Asparagus.

‘Asparagus,’ I said, and waited for quotes from Veggie tales to surface.

Then he saw it, nearly camouflaged in the vine ripened tomato bin, was a baseball sized light magenta rubber bouncy ball.

As quickly as he picked it up, I told him to put it back. He placed it back in the bin, and we walked away. We shopped for another thirty minutes or more. Aisle after aisle we walked up and down, scanning shelves for items on our list. We covered nearly every corner of the store, stopping several times along the way, but never backtracking!

Eventually our supply procurement was complete and we unloaded at the cash register to weigh and evaluate the damage. Puzzled, we compared the subtotal to the sacristy of grocery bags back in the cart, scratched our heads, squeezed the turnip, and obtained our receipt.

We arrived home, and quickly began the task of putting away the groceries. The evening then screeched to a halt. Something had happened, unknowingly, that sent us backsliding at a high rate of speed. The realization of what had occurred left us sore, and dazed as life suddenly slammed to a stop. There in Ethan’s hand was the baseball sized light magenta rubber bouncy ball.

‘Where did that come from?’ I demanded, almost in shock.

My mind raced to understand how he could have snuck that away. He had been with me the whole time. In the nanosecond it took for him to reply, ‘Dad, because it was fun,’ my mind retraced our steps.

We HAD put it back and never returned to the tomato aisle!

I had even frisked him in the cereal aisle when I noticed his hand kept darting into his pant’s pocket. It had been his dinosaur book and a few small animals that he normally keeps with him. I had even checked him again when he kept touching the packages of bacon as we selected eggs from the cooler.

I had never spotted this ball, ever!

‘Where did you have this?’ I asked.

‘It was in my pocket,’ pointing to his right pocket.

Impossible, I thought, I had looked at him, specifically that side of him, and I never saw anything that would have led me to think he had shoved a baseball sized object into his pants.

As I put the groceries away, Ethan and my wife returned to the store to make amends. They spoke with the Assistant Manager, returned the ball, and made confession,

‘I’m sorry I stole your ball, because it is fun!’

They returned home and Ethan was advised that because he ‘had not been a good boy’ we were not going to play hide and seek. He explained, ‘But dad, I’m sorry I stole the ball, because it is fun.’

He kept repeating that phrase in his robot-like metered and monotone voice. The disclosure of his actions repeatedly buried by his jumbled emphasis and word choices. He had not taken the ball because stealing is fun. The ball was fun. That fun-ness is what compelled him to take it, and by taking it, it became stealing.

Five years had passed since we last had this issue at a public place. Each time, the object taken, was taken not because of some need to gain an advantage and avoid paying for it, but because the fun-ness of the object overwhelmed him and he could not put the thought away. He stole a chocolate candy, not because he liked chocolate, he would have never eaten it. He stole it because it was wrapped like a small Christmas present. The lipstick he took, was not taken because Red Revival 645 was his color, but because the case was small and shiny.

Apparently we have not quite conquered this compulsion, and Adventures in Backsliding (sounds like a bad movie form the 80's) are still on our horizon. But we did have a breakthrough last night, a magnificent one to be exact.

While sitting on the bed behind me, Ethan, for the first time ever, composed and formulated in his mind a well-written letter without the aid of a piece of paper or promptings from a teacher’s aide. He simply said,

Dear Dad,

I’m sorry I stole the ball from Albertson’s.

Your son,
Ethan.

Machiavelli was right, ‘Never waste the opportunities offered by a good crisis.’

Crouching Tiger, Holy Cow!

2011-04-02T23:16:00.000-07:00

Yoga, with its powerful techniques for creating a sense of inner peace, harmony, and clarity of mind, is absolutely relevant to the modern world...Given the increasing pace and conflict present in modern life, with all its resulting stress, one could say that yoga has become an essential tool for survival, as well as for expanding the creativity and joy of our lives. Bhole Prabhu

As a way of coping I have developed, maybe invented, but certainly not perfected, a few new Yoga poses. These help me reduce my stress and keep my youthful appearance while facing the challenges of raising a special needs child.

To get the most from the techniques, these are best performed following a meltdown, episode, or embarrassing experience.

The Look

Slowly close your eyes, slightly tilt your head back and take a slow and deliberate deep breath. Since your eyes are closed and nobody can see, roll them deeply into the back of your head looking for an escape route which for some reason is always blocked off, and then begin singing in your mind the lyrics, ‘Welcome to my world, won’t you come on in…’

This pose is a necessity for everyday harmony. It’s my way to ‘engage the mechanism,’ much like Costner’s character does in 'For Love of the Game'. It actually works. Trust me I do it several times a day, every day.

Crouching Tiger, Holy Cow!

This pose requires two people. It can be accomplished if both people are relatively calm, but brings greater enlightenment if one happens to be in the throes of a meltdown.

First, situate yourself on the ground, couch, chair, or a bed, taking hold of your animated partner in a bear hug, wrapping your legs around theirs so they are in the fetal position. This should—should being the operative word—ensure that you don’t get kicked in sensitive areas.

While holding the grapple, exchange deep pressure hugs with your partner. Customarily you may need to initially coax the hugs from your partner by saying such things as, ‘I need a hug,’ ‘Is that all you’ve got, I need a hug,’ etc.

As the hugs are exchanged, move spontaneously and actively with the squirming movement of your partner, consuming their energy in the process. The motility of this pose may last anywhere from 2 minutes to 30 minutes in duration.

Greater enlightenment can be reached as you juggle the burden of hugging with the overwhelming need to flee the screaming in your ears—the ringing should go away after an hour.

This pose can be modified and performed in a moving car, at the mall, or toy aisle at the department store. However, such exercises should be left to experts, and you should anticipate that somebody called the police on you.

The Poker Face

aka: The Train Wreck or The Dumpster Fire

The pose is done by holding your face in your hands, while deeply rubbing your eyes and temples with the tips of your fingers. While doing this slowly shake your head from side to side.

Hold this pose until you see the humor of it all! Relax, that realization should come quickly.

WARNING: If the pose does not bring relief quickly, cheerfully transition your pose to Crying on the Inside.

Crying on the Inside

This pose is a modification of The Look.

With your eyes open, form your lips into a grimacing smile, while sensing the pit in your stomach that is building to a crescendo is about to erupt. Deep breaths, taken in through the nose are repeated, and the pose is held until you remember that you are the parent of a special needs child!

When the thought arrives, keep holding the pose until the realization of that thought dawns; YOU are the parent of a SPECIAL needs child!

Once that thought appears, take one last deep breath, and release. You should immediately feel the grimacing smile melt away to a prayer of thanks!

Two-Cents On The Tuck

2011-03-25T07:46:00.000-07:00

OP-ED CONTRIBUTOR
CLOTHES TO MATCH THE TICS
By ETHAN'S DAD
Published, March 25, 2011

WHILE stumbling through the internet, I came across an article, self imposing a series of strict rules on men’s fashion. A catalog of fashion faux pas for the up and coming.

To tuck or not to tuck? That was the unasked question decisively answered by the self-proclaimed Marquis De Couture! Clearly this Charlatan of the Faubourg Saint-Honoré has an excessive amount of time on his hands, and no other style improprieties have surfaced since the '80s to attract his scrutiny--has he forgotten mullets, Miley Cyrus, Lady Ga-Ga? How about shants, those things that are neither pants nor shorts, but something rather disgustingly in between?

I do not claim to be the GQ equivalent of a fashion authority--I once donned a pair of white linen pants paired with a navy blue double breasted blazer accented by a red and blue diagonally striped tie. It was a great Ralph-Lauren-Polo-Yacht-Club-Cologne-Ad look, except for the face--but I am well versed in the AUTISTIC art of the tuck, and PK, you are wrong! There are those occasions when the tuck is the bomb!

While giving your less than sensational advice equal play, I offer my objections with pictures, and a closing comment.

4 Reasons Men Should Not Tuck in a Shirt
November 17, 2010, By P.K. Lassiter

I have a friend named Pete. Great guy. Two kids, career on the rise, single … and generally a man about the town. And no, Pete is not my first name, or is it a euphemism for me. Pete is real. And Pete may be you…

Like I said, Pete has everything going for him. Including all of his aforementioned attributes, he’s a funny, gregarious, likeable guy. Pete’s makin’ it happen. Except for one thing. Pete tucks his shirt in too tight.

So what?... you say. Big deal. So Pete’s neat. He wants to be presentable. Look his best. Clean cut. Professional. An upstanding citizen. He should tuck his shirt in, and as tight as the lug nuts on his truck too. Right? Wrong.

And let me make this clear, I’m focusing on the social aspect of shirt tucking, at work, tuck to your hearts content. I’m not the boss. Maybe he likes it that way. They’re usually ‘tight tuckers’ too.

Socially, it never fails. I’ll step out with my buddies – and one of them (sometimes more… unfortunately) has their shirt jacked in so tight it looks as if it was painted on. It also never fails that when they make their approach (some are better than others) the first thing a woman notices is the ultra tight tuck. It’s never good, regardless of shirt type. Here’s why…

1. The button down. Unless you’re 6’3” and 200 lbs. or less -- let the panels loose. The way button down shirts are cut; they simply do not flatter most male physiques. Especially those of the average American male in his 30’s. Yes, this means you. You have to be a lean, mean fighting machine to get away with the ultra tight tuck. And even then it rarely looks great.

THE Ultra Tight Tuck!
Ultra Great!

2. The T-shirt. T-shirts should never be tucked in. Ever. And I mean never. I don’t care if it’s a thousand dollar, golden threaded, Ralph Lauren Purple label, or one of those disastrous Ed Hardy numbers… If you are tucking in your T-shirts then you’re so far gone help might not be available to you. Stop. End of story.

THE T-shirt Tuck!!
Who says never?

3. The Jersey. Unless you’re getting ready for a league game, then leave the jersey un-tucked (better yet, in the house). And yes, I do see guys walking around the street wearing jerseys tucked in. Not only does it look ridiculous, it usually precedes a request for spare change. Better to just leave the jersey in the drawer until game time. And even then, I wouldn’t tuck it in unless the ref made me.

4. The sweater. See # 2. You see what I mean? Take a look around the tavern/bar/lounge/restaurant next time and study ‘the tuck’. 99% of the time, it’s not a pretty sight. Hence my advising against it. Actually, I’m not advising… I’m ordering.

THE Sweater Tuck!!!
100% Perfect

So let those shirt ends out. Give them air. Let the panels run free and see the light of day. It’ll convey a relaxed attitude. An effortless ease. A hipper approach to life. You hear me, Pete? Are you listening? (This means you).

COMMENTS:

John M. …Wearing your shirt out is nothing more than an excuse to perpetuate the sloppy look - torn clothes, uncombed hair, ballcaps indoors, etc. Who died and made you Joe Cool? … p.s. You shouldn't wear your underwear exposed either. - 02/20/2011

Steve P. OK, I felt the need to chime in here. I must admit, I am a t-shirt tucker. But I do this for your sake. I am one of those guys who is over weight and I don't want to expose you to my navel when I reach up for something, yawn, sit back, etc. … BTW is it ok to tuck the t-shirt in my underwear ;-) - 12/30/2010

Junior M. I tuck but let the edge drape over a bit to allow for flexibility. On a different note, what about buttoning up all the way on the collar of polo/golf type shirts especially? … For a while i wore these type of shirts this way and then i stopped because I felt self concious in public … Next time I will follow my instinct and not worry about what others think. - 12/30/2010

Ethan’s Dad. Lassiter, I’m sure Pete, your unclaimed alter ego, is a “funny, gregarious, likeable guy,” but he clearly needs to let his guard down and learn to Stim; embrace those repressed inner tics and live a little, or a lot, depending on the sensory overload.

Funny,
gregarious,
likeable
AND
tucked!

As for Steve, it is okay to tuck into your underwear, especially if it is soothing to the emotional roller coaster crashing around the theme park of your mind. And if you do, John, then it is more then okay, it’s imperative, that you let your underwear show; it makes the ensemble complete!

Junior, fashion should not be what others think is acceptable, stylish, or cool! It should be what works best for you!

In Any Degree . . .

2011-03-22T17:41:00.000-07:00

"Always aim at complete harmony of thought and word and deed. Always aim at purifying your thoughts and everything will be well" Mahatma Gandhi

I must confess, there are those occasions when life around this house gets the best of me, and I am left pleading for forgiveness. The culprit on those occasions are my thoughts; thoughts which, beginning in the back of my mind, develop with such force, that they create their own gravitational force, twisting and grappling the polarity of my mind that on a sudden they appear, front and center, playing out like the encore of a Broadway play!

If any of you have witnessed, read, or sensed these got-the-best-of-me moments “in any degree,” I apologize.

Most often, these thoughts, which involve me being embarrassed by the actions of my son, (for instance, here's another) are brief and can be flushed away with a quick, yet painful, swallowing of pride.

Other thoughts must be dealt with more forcefully. These rare, but devastatingly more painful, thoughts seem to spring up suddenly, out of nowhere, like noxious weeds. Having laid in wait below the sun lit surface of one’s soul for just the right time, they burst through indiscriminately, vying only for the opportunity to steal the nourishment intended elsewhere, and if left unattended, to spread their ruinous seed. These encroaching thoughts find the weakest points in the armor, through which the most bitter of thoughts grow, and no simple swallowing of pride, will allow the acrid thought of “Why me?” to be washed away.

Sunday night, was a bitter night!

Dinner was ready, and the family was called downstairs. Michael asked if Jimmy Merrill—a close friend, our former Bishop, and present member of our Stake Presidency, who was coming by to take Michael to visit some families—could eat with us. Certainly, we had plenty. An extra place was set, and we waited for his imminent arrival.

As we finished setting the table, and awaited the corn muffins in the oven, Ethan sat patiently at the table. Before him was a plate of 18 dinosaur chicken nuggets (FYI – out of the blue, the company changed the recipe back and our self-imposed 2-year ban on these ended), microwaved, cut, and awaiting the deluge of ketchup. Emma took her seat next to Ethan, which started a tirade of “Emma’s trying to kill me” outbursts. I asked Emma to move over one seat, in hopes the “kill mes” would die off. She did, and Michael took the place next to Ethan, which immediately brought a piercing scream.

Though nearly 19, there are occasional 10-year-old antics which escape from Michael’s lips, and this was such a case. As Ethan’s shrill cut through what had been a pleasant Sunday evening, I turned to see Michael smirking, and mumbling something about, “What? I just...”

Then it happened…

(This particular Forbidden had appeared on the radar of Ethan’s vocabulary only a week ago. We had yet to identify its source—until now—but it had quickly risen on the list taking a close second only behind O.M.G.!)

…Dad, Emma is trying to kill me. I’m going to kick her @#$!

As I moved across the kitchen to correct this, Michael headed to the door, where the chime of the bell signaled the arrival of our dinner guest. Just in the nick of time; our moment of crisis had come and gone, before Jimmy’s arrival.

I don't think so!

As I quietly spoke to Ethan, Michael directed Jimmy towards our kitchen table. I stepped backed, greeted our guest and then proceeded to take the corn muffins from the oven.

...Dad, I said I’m going to kick Emma’s @, #, $!

Yeah, spelling it doesn’t diminish it on the list, and certainly doesn’t dissuade the pleadings from his mother as she petitions, “Really, come on? Please stop!”

Then, with the realization that the toilet just flushed was going to overflow and you were defenseless to turn off the water supply, or stop the certain flood, it started. Like a stuck needle in a vinyl record, it just kept repeating itself, over, and over, and over, and over!

“Please stop!” his mother begged—the spelling now replaced by the actual word again! I took him by the shoulders, and directed him to walk with me. He turned,

...But Dad, I want to kick her, [you guessed it]!

I froze; for what seemed like an eternity I held my breath and counted, hoping beyond all hope that it would just stop.

It didn’t.

It just kept coming, spilling from his mouth like a flood!

We walked to the bathroom, where I consciously turned on the light, and the fan, praying that the sound of the whirling blades would drown out the flood that kept escaping from Ethan’s mouth. Then it happened, my armor cracked, and the vilest of thoughts sprang out:

Why me?

This was not the logical, suppositioning, allegorical, questioning. That question that delves into the heart of the matter, searching for a source, or a root cause, as one might look for the beginning of the Amazon, or whether the chicken or egg came first. This was the self-centered what-have-I-done-to-deserve-this question that only comes when one looses sight of the end goal, and I realized it immediately!

Though I never asked that bitter question out loud, Ethan must have sensed it, for just as soon as it escaped the shadowy corner in the back of my mind, tears welled up in his eyes, and mine, and he said, “I’m sorry, Dad!’

“Please stop,” I pleaded, “We don’t say those words in this house. It’s ugly!”

I hugged him; absorbing his anxiety. He hugged me; forgiving me.

We stood silently for a few seconds, then stepped out to finish dinner, leaving behind my sin, escaping, spiraling, venting upward, into the night air, and to a familiar darkness . . .

I Wanna Hold Your Hand . . .

2011-03-20T10:02:00.002-07:00

Last Sunday, after Sacrament meeting ended, Ethan and I left the stand and walked towards where his teacher was standing (His teacher is a giant of a man, large and strong enough for Arnold Friberg to have used as a model in his paintings). Ethan greeted him in familiar fashion, "Hi, Brother N," then gave him a hug. Brother N replied, "Hey, Buddy, you ready for class." Ethan replied, "Can I walk with you?" and the two turned and began walking down the aisle out of the chapel.

As they walked, Ethan reached for Brother N's hand, to hold it. At the slightest indication that flesh had touched flesh, Brother N's hand shot back, twisting and recoiling, maneuvering this way and that, like a jettisoning water hose free of the fireman's control, all to avoid the unnatural contact. His arm raised with equal jerked awkwardness as he sought to find a comfortable, acceptable, location to put his hand. His hand drifted downward towards Ethan's shoulder, but the feelings of tension, like opposing poles of magnets, would not let it rest, and eventually his arm dropped back to his side. They walked on, and I could not help but smile.

Holding hands with a nearly-fifteen-year-old young man is not normal. And to some is quite unnatural. Believe me, I get it. No harm no foul.

But occasionally, there are those days, those rough days, those days when you are out and you see the looks as he and I walk hand in hand down the aisles of Home Depot, or Kohl's, or as we push our grocery cart together. Those days where I need to repent for taking offense. It's on those days that I wish Autism was more distinguishable, more noticeable to the average human eye; not disguised with only subtle and time-involved observations making it apparent.

For instance, had the gentleman in Home Depot with the conspicuous stare allowed his eyes to take in the whole picture, he might have seen things differently. He might have noticed the childlike bewilderment in his eyes, as they wildly examined his surroundings through thick framed glasses which rested peculiarly on the tip of his nose. He might have noticed that it was nearly 90 degrees outside, and yet this young man was wearing a sweatshirt. The sweatshirt itself was tucked in, and not just in the waistband of his jeans, but in his underwear. He might have noticed his pants didn't fit right, his belt pulled tight, the waistband of pants too large for his beyond-slim waist, causing them to buckle in an unwieldy bunch around his waist, and though the waist band, which rested below his underwear waistband--making them clearly visible--made his pants look overly large for such a young man, the pant legs barely touched the tops of his shoes for his 5'5" frame. He might have noticed his shoes were tied with no less then five knots, creating a tumorous clump of shoelace, leaving nothing to chance that they might come untied; shoes that on their toes held two shiny silver metal plates, engraved for all to see with the international medical alert symbol and chiseled permanently with the word: AUTISM!

Most of what we do we do, having "learned by sad experience." After that we do it because it is routine, and routine for us, is calming.

The medical alert tags came after Ethan's visit inside the neighbors house via the doggy door.

Holding hands came by another route altogether:

Evie was shopping with Ethan, age four, at WalMart. They were in the diaper section, and as Evie turned to grab a package of diapers from the shelf, Ethan shot off, running through the aisle, under a clothes rack and out of sight. She ran after him, but he was gone. She frantically looked for an Associate, and told her Ethan had run from her. "CODE-ADAM" echoed from the stores intercom within seconds of the news, and like a well oiled machine, every Associate stopped what they were doing and the search was on. Within an eternity of seconds (about thirty) the initial Code-Adam was answered with the signal that they had found Ethan, in the jewelry section, about 50 yards away!

From that day on, if he could fit in a shopping cart seat, he was in the shopping cart seat. When he was too big for the shopping cart seat, we pushed a second cart and he road in the cart itself. Eventually he outgrew that and we made other plans.

Flash forward to third grade. Ethan got on the bus at school, having had a bad day. Normally he rode with the driver and an aide. Today, because it was such a bad day, he rode with an additional aide, his own aide. As the bus made its way up the freeway towards our home, Ethan sat quietly in his seat holding a paper rainbow on his lap. He had been focused on drawing rainbows for quite some time and this one he had worked on for several hours. As the bus neared the exit to our house, a wind gust blew through the opened windows and grabbed his rainbow, lifting it out through the window and into the oblivion known as the Black Canyon Highway.

A melt down commenced immediately. As the bus slowed to a stop out front of the house, Evie and Michael were both standing on the sidewalk waiting for him. Ethan gathered his things, as the aide explained the trauma. Ethan exited the bus and darted off at full speed, intent on retrieving his rainbow. With more tunnel vision and fixed determination than a laser beam, Ethan ran full speed, focused only on finding his rainbow. Michael ran off in pursuit. Ethan, blind to anything other then his rainbow, shot off the sidewalk and into the street. Michael, desperately trying to make up distance, sprinted as hard as he could. At 100 yards the race was over, Ethan had been captured. Evie drove up in the van and she and Michael wrestled Ethan into his seat.

To stop the madness, Evie, Ethan and Michael drove up and down the freeway scanning the road for any signs of the rainbow. After 30 minutes, it was determined the rainbow was gone.

After that day, whenever we went anywhere with Ethan, somebody was assigned to hold his hand. As he got bigger, and with that I mean stronger, and faster, it was decided Dad would take the hand holding assignment permanently. Though the assignment can change based on his mood, for the most part, it is he and I, holding hands whenever we walk together.

Over the years I've learned that it is therapeutic when we hold hands. The touching allows an escape route for frustrations, excessive energy, and some of his anxieties. The touching also brings a calming peaceful influence to each of us. As Ethan and I have held hands I have come to learn a deeper meaning to the phrase “willing to bear one another’s burdens, that they may be light."

Behold Your Little Ones!

2011-03-14T18:47:00.000-07:00

The Savior teaches us that to enter the kingdom of God, we must become as a child, "submissive, meek, humble, patient, [and] full of love."

To that list, I think we can be safe and add Innocent!

Between 1945 and 1969 Americans were treated each week, on radio and television, to Art Linkletter's House Party. During each episode, Art Linkletter posed innocent questions to innocent children. As an audience we sat back and laughed, giggled, blushed and smiled as kids said the darnedest things--boy did they!

Around here, Ethan has a monopoly on both: being child-like, and innocent.

Take this afternoon for instance,

Ethan: Dad?

Me: Yes.

Ethan: When Jesus comes again, and Brigham comes out of the grass, and I'm a good boy, I'm going to ask Jesus . . .

. . . Jesus give me super powers like Spiderman!

ETHANISMS . . .

2011-02-21T23:28:00.000-07:00

Cadbury: Sensing you were at a loose end, I've arranged for a little entertainment.

Richie Rich: I'm really not in the mood for the Vienna Boys' Choir today.

Cadbury: Sadly, the choir was unavailable, sir. But I did make other arrangements.

Richie: I don't believe it. [Gloria, Pee-Wee, and Omar enter the scene from around the corner] Thanks, Cadbury, I owe you one. . . Hi, guys.

Pee-Wee: Just checking out your crib, here.

Richie: Crib?

Cadbury: I believe that's street slang for "home," sir. An idiom.

Omar: Who you calling an idiom?

~ ~ ~

Tony Robbins once said,

“To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others.”

This is no truer then at our house.

Years ago, when Ethan was probably six, he came downstairs and appeared to be gagging on something. He wasn't choking, but clearly something had crossed his lips that was making him want to gag, and he wanted to spit it out.

Had he swallowed something poisonous?

Had he drank some household cleaner?

I held his face, and asked him "What happened?"

We had yet to master the W, H words (we have still not mastered the W, H words), so his only response was the same canned response we got with any question we asked him.

"I don't know Dad . . ."

How was school today? I don't know Dad.
Did you sleep good? I don't know Dad.
What color is your shirt? I don't know Dad.
Are you hungry? I don't know Dad.
Would you like a cheeseburger? I don't know Dad.

. . . I asked again, this time changing the question slightly. Again his answer was, "I don't know Dad."

Four more times I asked the question, each time trying a different approach. Regardless of the question the answer remained the same . . .

"I don't know Dad."

His gagging increased . . .

The saliva dripped from his mouth more rapidly . . .

Each gag exponentially increased my fears and concerns as to what happened.

I ran upstairs and scoured each room, looking for clues to what he might have gotten into. I finally found the culprit in the hall bathroom. There on the floor was a small bowl of potpourri. It had been knocked over, and one of the sea shells from the container was wet.

He had placed the shell in his mouth, and realized it was covered with perfume!

I don't blame him, it would have caused me to gag!

Fortunately, though unpleasant, it was not critical. A towel wiped out his mouth and a glass of juice cleansed the remaining taste from his tongue.

It was then I decided I would give anything to be able to communicate with my son. I didn't care if we spoke of anything important, I just wanted to be able to ask him a simple question, any question, and have him know what I was asking!

Eventually, Ethan developed his own special style of communicating.

We still struggle with the W, H questions, but we are making progress. For instance we have discovered that when we ask him, "How was school today?" His response, "I am fine . . . I had fun," actually means,

I had a good day. I didn't get in trouble, expelled, put in timeout, and the vice principle over student behavior SHOULD NOT be calling . . .

Most of his communication consists of quotations from movies, and morphed sentences, tangled with syntax, semantic, and organizational "noise," as they call it, and unless you understand the context you can miss his point completely. Here are a few examples:

Phrase: . . . [insert any name] is trying to kill me!
Meaning: . . . I may be mistaken, but I perceive [insert any name] is upset with me over something I've done.

Phrase: Oops, I farted with my butt.
Meaning: Excuse me, I farted in traditional fashion. Not by making handless arm pit farts as I traditionally do, when it is quiet, and making farting sounds would be embarrassing!

Phrase: Every year, all day, because Emma is trying to kill me.
Meaning: I'm getting a little annoyed playing with Emma. We have come to a cross roads in our relationship and I no longer desire to play this game with her.

Phrase: Almost there . . .
Meaning: I am in the middle of going to the bathroom, and I haven't quite reached that point where I am finished.

Phrase: Oh, sorry, sorry . . .
Meaning: I'm not sure why I am laying naked on this blanket in my room quoting movies I haven't seen in years, but I was thinking about getting dressed eventually.

Phrase: Yesterday, when I was a baby, did you . . . ?
Meaning: I was just reminiscing about when I was a small child-by the way everything in the past is considered 'yesterday' in my mind-but, while reminiscing I specifically recall in vivid images that you used to . . .

Phrase: I think [insert anything] is too hard
Meaning: My anxiety is going to boil over if I have to put up with this [insert anything] much longer. Get me out of here, or this is going to get ugly.

Phrase: Dad, I want to give you a kiss!
Meaning: Oops, I was just caught doing something very bad, and to divert attention away from it, let me be overly affectionate and remind you how sweet of a boy I am to lessen the blow I am about to be dealt for . . .

Phrase: Everybody shut up!
Meaning: Excuse me, I was just thinking of something quite funny-at least to me-and I feel strongly that you would be quite touched by my recitation of this matter, and I must have your full and complete attention post haste!

Phrase: Dad, you forgot something?
Meaning: Dad, I just did something that I think is very noteworthy, and you need to respond appropriately by telling me, "That's my boy!"

Occasionally, Ethan even uses sign language to communicate.

He picked it up watching Signing Time with Alex and Leah.

When I first noticed this pattern of communication, he had gone hours and had not said a word to me. Suddenly he tapped my arm and made a sign with his right hand opened with his fingers extended and spread out. He then tapped the tip of his thumb on his forehead.

I had no idea what in the world he wanted. He just kept looking at me and kept tapping his thumb on his forehead.

What in the world did this mean!?!

Eventually I discovered (Emma told me) that was the sign for "Dad."

The moment I discovered the meaning, I was deeply impressed.

No, I was touched.

The "Dad" sign was then followed by another sign.

He held up his right hand. His ring and pinkie fingers were tucked into the palm of his hand while his thumb, index and middle fingers were extended and spread like jaws of a shark. He suddenly shut the three fingers, bringing their tips together, as if a trap had suddenly sprang shut.

What was this sign?

He kept repeating the two signs over, and over . . .

Bewildered, I asked him what he wanted. He was in no mood to speak, he just kept giving me the hand signs for "Dad," and the mysterious three fingered sign.

WHAT IN THE WORLD IS HE TRYING TO TELL ME!?!

Emma didn't know. Finally Evie arrived. I pointed out what he was doing.

She smirked, and said, "He's mad at you and is telling you, 'NO!'"

REMEMBER: Be Careful What You Ask For . . .

. . . It could just turn out to be an absolute JOY!!

Please Don't Take It Personally!

2011-02-19T14:07:00.000-07:00

We, as a couple, don’t get out much.

In fact, I occasionally look for reasons to not get out; not that I avoid people or events but I consider the benefit versus the consequences and decide accordingly. If you know me, especially from a distance, you could even consider me a recluse, but be careful.

If by recluse (from the Latin recludere, which means "shut up" or "sequester") you mean someone in isolation who hides away from the attention of the public, a person who lives in solitude, i.e. seclusion from intercourse with the world, you are only partly right. Reclusiveness does not necessarily connote geographical isolation. A recluse may live in a crowded city, but infrequently leave the security of his or her HOME.

You see, I am not:

1) A celebrity seeking to escape the attentions of fans (that will never happen);

2) A misanthrope unable to tolerate human society (though I have my moments);

3) A survivalist practicing self-sufficiency;

4) A criminal hiding away from people to avoid detection by police (funny);

5) A loner (right, with an Indigo [more blue then red] personality – I don’t think so);

6) Hiding a physical deformity that repulses others;

7) A hermit or an anchorite hiding away for religious reasons;

However, I am a variation of a recluse who sequesters himself due to psychological reasons (I heard that!), such as:

1) Post Traumatic Stress Disorder,

2) An avoidant personality disorder,

3) A phobia,

4) Or Autism Spectrum Disorder (BINGO!)

Trust me, this desire to keep sequestered in the “security” of my HOME has nothing to do with any person in particular, or any specific event for that matter. As I said before, I consider the benefit versus the consequences and decide accordingly. This is a life-skill learned through nearly fifteen years of hard fought campaigns on the AUTISM battlefield of nuclear meltdowns.

Let me give you an example of our WEEKLY battle.

Ethan: Mom, after I go to bed and I wake up, how many more days of school is it?

Mom: Five more days.

Ethan: Uuuuuuuuughhhh! Mom, I think its too hard.

Mom: On Wednesday, its a half day. [this only occurs on the first Wednesday of the month]

Ethan: (Tiger Woods fist pump) YES!

The next day...

Ethan: Mom, after I go to bed and I wake up, how many more days of school it is?

Mom: Four days.

Ethan: Mom, I hate school.

Mom: Tomorrow is a half day.

Ethan: (Tiger Woods fist pump) YES!

Friday afternoon:

Ethan (as he gets off the bus): Mom, no school tomorrow?

Mom: Nope, no school tomorrow.

Ethan: (Tiger Woods fist pump) YES!

Saturday evening:

Mom: We need to go to bed, tomorrow is Church.

Ethan: Uuuuuuuuughhhh! Mom, I hate Church.

Mom: But you like Church.

Ethan: Mom, I think Church is too hard! I think I need to stay home cause I have the sniffles.

Mom: You don't have the sniffles.

Ethan: Mom I need to stay HOME and take care of Michael.

Mom: Michael's going to Church.

Ethan: Uuuuuuuuughhhh!

Mom: Maybe we can see how you feel after Sacrament meeting.

Ethan: Mom, I think Church is too hard...

Last summer we took a vacation to California to visit relatives. We had gone to Church with my Aunt and cousins. We had been at Church for a whopping 70 minutes. We had barely concluded Sacrament meeting when we could feel Ethan's anxiety bubbling to a melting point. This is most noticeable from the whining requests, physical agitation and tension seen and felt in his body. We had experienced this behavior before, and had ignored it in the past, nearly to our demise. But we had learned from our mistakes, and would not suffer the consternation of ignoring it again.

I excused myself and Ethan and I drove to the hotel. What should have been a pleasant Sunday drive of no more then 5 minutes, became a anxiety riddled E-ticket ride, that seemed to last forever.

Upon entering the hotel room, which had been our HOME for the past week, Ethan quickly changed clothes, and took a seat on the couch. In less time then it took to drive home, the anxiety had melted away, like morning frost on a spring meadow. For the next two hours he sat calmly, his legs crossed, watching cartoons. Nary a peep, a twitch, or an Uuuuuuuuughhhh!

So, Please Don’t Take It Personal!

We have learned that HOME really is HEAVEN ON EARTH!

Unusual . . . Says who?

2011-02-06T20:11:00.000-07:00

Unusual: ŭn-yū'zhū-əl; adj. Not usual, common, or ordinary.

If you were to spend even a few hours in our home, one thing would be clearly visible!

Nothing is ever usual! There is no normal, there is no common, there is no ordinary!

Let me explain . . .

Most people when shopping for clothes, try them on in the dressing room. At the very least they take the clothes off the hanger before they try them on!

Most people watch movies while sitting on the couch or a chair. Occasionally, you might lay on the floor with a pillow to watch a movie. We prefer to combine these in to a hybrid version . . .

What do you mean you can be too big for a kid's ride? Once a kid, always a kid right?

If you can't find some movie scene you can imitate while doing it, why even bother doing it!?!

T-Rex - aka: Sharp Tooth - The Land Before Time

Jessie and Woody - Toy Story II

Hey, Mom! Look what I just made out of the new t-shirt you bought me for P.E.? I love scissors! Not even Michael Jordan can touch this!

Attending a wedding at the temple? The House of the Lord? Here, let me give you my best "reverent" pose!

What? When you go to the bathroom you just read?

Boooooorrrrrrrrrrrring!!!

You could be in there for an hour!

You gotta get with the program . . .

Have you tried circling your favorite words in magazines?

Action figures?

Dinosaurs?

Sticky Tape?

Puzzles?

How about a combination of all of them!?!

By The Numbers. . .

2011-02-06T09:20:00.001-07:00

A Primer On (how not to hold) Tithing Settlement

Annually during the final weeks of the year, millions of church members throughout the world gather to visit with their Bishop (or Branch President) to hold what we call "Tithing Settlement." As members of The Church of Jesus Christ of Latter-day Saints, it is a time for us to sit with the Bishop and review that a proper and accurate accounting of our donations was made. Once that is done it is an opportunity for us to declare to the Bishop that as members of the church we individually, and as a family, are full tithe payers.

Traditionally these meetings take place at church, but occasionally, when distance to the building is excessive, the Bishop may choose to have the members meet at his home. Since the members in our ward live ten miles from the building, but no further than two miles from the Bishop's house, we met there.

Being a Sunday, and the formal nature of the meeting, we were still dressed in our "Sunday Clothes" when we knocked on his door. Bishop Bentz answered the door and we were invited in. As Ethan and I stepped through the threshold, Ethan quickly noticed that the door to one of the kid's rooms was open. Bishop Bentz recognized the problem immediately and quickly grabbed at the door and closed it.

Too late, the damage was done. Like a kid in a candy store, Ethan was instantaneously wound up, and brimming to explosion. Whatever it was he saw in the room, or he imagined was available for him to touch in the room, had grabbed hold of him, and the internal OCD battle was on.

We took seats around the dining room table, and I sat Ethan in a corner where my strategically placed chair could corral him, IF necessary (I could see it coming!).

It was quickly apparent that this meeting needed to be fast. As the Bishop reviewed our donations with us, we each responded to their accuracy and their fullness. With each question, interruptions broke out from my end of the table, as Ethan would blurt out a request to play with toys, the family's bird, etc. Finally, he played his "Ace in the hole" card, and asked if he could say "hi" to Sister Bentz.

Sister Bentz poked her head in, and gave him a hearty wave, and smile. Ethan immediately interjected his need to give her a hug. Sister Bentz consented, and I got up and moved to the back of the room, placing myself between the group and the door to the bedroom. (Yeah, I could see it coming! You needn't be a rocket scientist to have figured out the scheme.)

Ethan, though he did desire to give Sister Bentz a hug, also knew that by so doing, he would be freed from his chair, and once on foot, could skillfully maneuver past everybody to the door, which so intently had been calling his name!

Like clockwork, the plan unfolded. Ethan finished his hug, and slipped, lick a greased pig, through the outstretched hands, past the group, and headed to the door. He had not anticipated that I, like Bobby Fisher in a chess match, had anticipated the move and had positioned myself to block his advance. We locked hands. He pushed. He dodged. He pulled. I didn't budge!

Michael, sensing the battle was going to erupt to a fiery finish, reached in to help. He grabbed Ethan from behind, and tried to pull him into his body.

Ethan turned, kicked, and struck. Recognition of what took place occurred as quickly as Ethan announced, to the anticipated shock of all, "I just hit him in the ?&#!$ . . . I said ?&#!$ . . ." Yes, he had used the forbidden word; the word which strikes his mother with fear, for he says it only to get a reaction! And as if saying it once was not enough, he then must announce it clear loud terms that he had in fact used the forbidden word!

Michael, grabbed at him, and Ethan dropped to the ground flailing like a cat in a gunny sack! I reached for him, and he flailed more violently. The fight was now, officially, ON!

As Michael and I were able to take hold of Ethan and pick him up, the entire Bentz family and the rest of my family--if you're counting that makes eleven people--stood in the hallway between the dining room and the bedroom, with eyes wide, and mouths gaping open!

Michael picked Ethan up off the ground, and threw him over his shoulder. I grabbed at the front door, and motioned for Michael to move out quickly. As he stepped through the threshold, Ethan grabbed at the door jamb and brought Michael to a screeching halt! As I quickly freed his hands from off the threshold, I could sense the brimming lava of the other forbidden words making their way to the surface. We escaped the doorway, just as one of the Forbiddens slipped from his lips.

Once outside, Michael could no longer contain the Tasmanian Devil, and placed him back on the ground. I stepped in, and pulled Ethan into a big bear hug! Now that we had room to maneuver, it was time for DEEP PRESSURE therapy, which means lots and lots of hugs! I'm talking serious hugs.

I threw Michael the keys, and went to get Ethan in the car . . .

Ever try washing a Bobcat?

. . . we eventually made it into the car, and deep pressure therapy continued. With grimaces, closely resembling smiles (a more public version of "The Look") we thanked the Bishop for his time, apologized to the family for the disruption, and drove home for an intense therapy session . . .

By the way Ethan ALSO needed an extra hour of deep pressure hugs before he calmed down as well.

Happy Birthday

2011-02-05T20:04:00.000-07:00

Today we celebrate a birthday. Not just any birthday, a twelfth. As I contemplated the events that mark this special day, a Writer’s Almanac radio clip from January 19 struck a personal chord, and I could not let it pass without comment.

On this day in 1897, Mark Twain wrote a lyrical, heavy-hearted letter from London to the Rev. Joseph Twichell in Hartford, Connecticut. He was his closest friend.

Twain's 24-year-old daughter, Susy, had died from meningitis the previous summer. He would forever consider it the most devastating loss of his life. He'd been traveling overseas and missed her last days. The following winter, on this day in 1897, he wrote about the ways in which his daughter's death affected him. His letter is a lament of great grief intertwined with an ode to his friend's great compassion. Twain wrote to his best friend of 40 years:

"I do not want most people to write [they] break my heart, but you will not. You have a something divine in you that is not in other men. You have the touch that heals, not lacerates. And you know the secret places of our hearts. You know our life — the outside of it — as the others do — and the inside of it — which they do not. You have seen our whole voyage. You have seen us go to sea, a cloud of sail — and the flag at the peak; and you see us now, chartless, adrift — derelicts; battered, water-logged, our sails a ruck of rags, our pride gone. For it is gone. And there is nothing in its place. The vanity of life was all we had, and there is no more vanity left in us. We are even ashamed of that we had; ashamed that we trusted the promises of life and builded high — to come to this!

"I did know that Susy was part of us; I did not know that she could go away; I did not know that she could go away, and take our lives with her, yet leave our dull bodies behind. And I did not know what she was. To me she was but treasure in the bank; the amount known, the need to look at it daily, handle it, weigh it, count it, realize it, not necessary; and now that I would do it, it is too late; they tell me it is not there, has vanished away in a night, the bank is broken, my fortune is gone, I am a pauper. How am I to comprehend this? How am I to have it? Why am I robbed, and who is benefited?"

Mr. Twain,

I wish you were still alive to read this; I anguish that your only conclusion to the death of your daughter is robbery. Though our experiences vary in the finer details, loss is loss, and you couldn’t be more wrong. So, to you Mr. Twain, I offer these words. Compared to your literary prowess, they are plain, but when they spilled from my pen, the night before my son’s funeral, they were pure.

Tiny hands, I held today, no life in them was found.
No touch returned, no squeeze replied
the ache within my soul.

Soft hands would never throw a pass, nor bait a hook to fish.
They’ll never make a pie of mud,
nor pass the emblems blessed.

Trained hands, lifted thoughtfully, then washed you and caressed,
they dressed you O’ so tenderly
so friends could cradle you abreast.

Gentle hands, wet with tears, blessed you with your name,
they asked the Lord to keep you,
and made the veil draw thin.

Pierced hands reached out to wipe away, the wayward tears that fell,
they pressed against your mother’s cheeks
and wiped away her fears.

God’s hands, my hands, each looked the same today,
as your hands reached across the veil,
and drew it back for me to see, into eternity.

I pray they speak deeply to you, to heal your troubled heart.

With great Respect,

Jeff

Travelogue concludes...

2010-11-27T09:07:00.000-07:00

Day Four - Are we there yet?

Most people, I think, can relate to Norman Rockwell's painting "Coming and Going."

It seems like on our journeys we always look forward with such anticipation to the trip ahead and the unknown experiences that await us. When the trip is done however, we seem to loose some of that energy.

Was it because we expected too much and were let down?

Did it fulfill our wildest dreams and therefore everything that is to come hereafter will never measure up?

Why does the trip there always seem to take so long, but the trip back seem to be so short?

I suppose the real issue is not trying to figure out those questions, but rather to learn to just take joy in the journey. Forget about the trip there or the trip home, just take time to look around on the way and enjoy it as you drive.

Trust me! I am certainly aware that this is not an easy task. Traffic congestion on the road can certainly raise the blood pressure, construction zones can leave you frustrated and wanting to pull your hair out, and if we focus too far ahead we will miss those simple things in life that make it all the more meaningful, such as the sudden and drastic changes in the landscape.

I for one used to pray that the Second Coming of Christ would arrive before I had to deal with a certain somebody's arrival at puberty.

Had my prayer actually came true think of the "Firsts" I would have missed.

I would have missed doing this yesterday. . .

And then last night I would have missed having him ask if we could call Santa and ask for the Sponge Bob Square Pants 1000-sticker sticker book at Target, just before he drifted to sleep cuddling my arm while clutching his Turbo Man doll. . .