Directions and Observations

There have been a lot of unique moments of discovery with E over the past 12 years.  None more so than rethinking about how E processes the world around him.

I am constantly amazed with his sense of direction, memory for locations and how he experiences things.

He has every elevator location memorized at several malls.  No matter which door of the mall we enter, he will steer me to every elevator for a ride.

His sense of direction has saved us from making wrong turns.

One trip to Pittsburgh in particular comes to mind.  Pittsburgh does not have a typical grid system of streets as cities in the Midwest do.  It is a confusing spaghetti-like web of streets winding their way between neighbors and around the three intersecting rivers.  Sandi, E and I were in Pittsburgh visiting \her college roommate (who is also E's godmother).  We were leaving to go to the airport which lies just west of the city and got confused as to which way to turn to get to the turnpike.  These were the days before smartphones and GPS units.  (Yes, those days existed).  Sandi and I were sure that we needed to go straight.  Hell, I would have bet my life that the turnpike was straight ahead.  E, all of 5 years old, began tapping on the window to the right.  I looked to the right and decided that going straight was the right call.  E tapped the window even harder.

I could see the turnpike, but there was no ramp ahead as Sandi and I thought there would be.  Sandi, turning her head to face Eion, said, "I think we should turn right."  Being stumped as to how to get to the turnpike, I shrugged my shoulders and turned right.   Not more than a half mile down the road, sure enough was the ramp to enter the turnpike.  Just how he knew that the right turn was the correct way is still a mystery to me today.  It was the day I began to trust E's internal GPS.  I will often ask E which way to turn and sure enough, he gets us where we need to go.

Another unique moment of discovery with E is his unusual sense about people.  I already have written about Alyssa, how he chose her as his camp counselor and how her family have become a big part of our lives.  E has consistently discerned with very little interaction who are individuals of good character and who are not.  His accuracy rate is still 100%.  He observes a person before he approaches.  He knows almost immediately if they are a person he wants to interact with.  There is some aspect as to how he observes or perceives things that gives him this unusual insight.  The only thing I can surmise is that he is perceiving some information that individuals with typically wired brains can't see or process.  Whatever this instinct or intuition is, he is not alone in this ability.

In talking with other parents of children impacted by autism, they report the same kind of intuition.  Children with autism spend a lot of time with adults as part of the regime of therapies they are often prescribed.   Does this time spent provide them with additional insight to the people?  I don't think so because E's ability to determine a person of good character works for any person, child or adult.

The typical thought is that an individual impacted by autism is unaware or not conscious of the world around them.  In my opinion E defies this stereotype.  E is all too aware of the world and people around him.  He notices everything.  From individuals who resemble the people in his life to the minutia of a word in a sign that reminds him of a favorite video or toy.

In thinking about how E processes the world around him, I only have one theory.  He memorizes everything.  Analogy time:  His mind is a limitless hard drive storing every aspect of his observations and experiences without any filtering.  It is the filtering that separates our experiences from his.  While, our brains perceive everything just as he does, we discount or filter the information we deem irrelevant.

In helping E adapt to the world around him, this was an important lesson we needed to understand.  Understanding E in this manner helps Sandi and I understand that certain sounds or sights buried in the background of our perceptual experience is experienced by E in the same manner as something in the foreground.  Every sound he hears and every item in his vision field is experienced in the exact same manner and intensity.  In shifting how I think, I have been able to open my mind to how I experience the world.  Obviously, I can't do it to the degree E can, but it helps me understand how to help E.

I may not understand why the Empire Carpet commercial sends him into hysterics (they do) or why the Geico commercials are the best (they are).  

Thanks E for helping me to be more observant and to better perceive the world around me.

Thanks for reading, more to come

Say _____________

Prior to E falling asleep last night as I was a tucking him in, he looked up at me, blew me a kiss and said "Say 'Bu-Bye'".  This was the third time yesterday E used a new word. SAY.  He hears me tell him all of the time, "Say 'Hi'", "Say 'Bye'", "What do you say?", "Say 'Thank You.'"  Obviously, his intent last night was to tell me, "I am done with you, please leave me alone.  I might go to sleep, I might not, but whatever I will do, I don't want you around me anymore."

A little explanation of E bedtime routine might be helpful.  After I tuck E in for the night, I usually stay in the room and read.  Occasionally, I'll have to jump into action and keep him in bed or in his room.  Most of the time I tell him to lay down, put your head on your pillow, and the like, which he complies in doing.

E has often said Bu-Bye to me during his bedtime routine.  My usual response is Yes, but go to sleep first.  But he has never told me to say, "Bu-Bye".  My response to his directive was, "I love you too much to let you fall asleep without me.  Nice try; I admire your effort.  Good work using your new word."  A look of distain and irritation came over his face, which he covered with his favorite blankie.  I took my position sitting in the corner of his room with a vantage point that allowed me to see and react to his rascal-like tendencies.

After about ten minutes, I heard the snoring signal of a sleeping son.  I adjusted the covers over him and smiled, knowing that he is indeed my son.  Despite the challenges imposed upon him, he still projects the impish smirk I still occasionally flash when my own rascal-like tendencies emerge.

I can't fault him.  He is genetically predisposed to challenge the authority of others.  Both Sandi and I (probably me more than her) seem to have a more than slight proclivity to challenging the status quo.  We push envelopes, barriers both professionally and parentally.  It is likely the reason where we are and definitely why Eion is where he is.

Say - is the first new word E has spoken in probably three years.  Oh, he types new words every day, the fact that he was able to use his mouth and vocal cords to say a new word is, well, .........amazing.  I am not sure what to attribute the acquisition and production of his new word.  Unlike other words, which are approximations, this was a clear, unambiguous pronunciation.  No guess was needed to determine the word he wanted to use.  It was just there.

In thinking back on last night, it still makes me smile.  His correct word usage and the very manner he used it reminds me of my youth, particularly of an event that still haunts my mom to this day.  I was thirteen years old and we were at the dentist for my semi-annual check up and cleaning.  The dental hygienist and mom were lecturing me about brushing better and flossing.  The hygienist warned that if I didn't I might have to have dentures and no one likes dentures.  The same impish smirk probably had appeared on my face.  My response to her was well I don't know if I wouldn't like dentures, I've never had them before.  To which a now paled faced hygienist rises from her seat and scampers out of the room.  I suddenly feel the hairs on my neck rise as I sense my mom getting ready to explode.  I turn with the smirk to my mom's red face, bulging eyes, teeth gritted and veins in her neck fully distended.

Will you shut your mouth, she snapped.

Oh boy!  I thought.  The irony of being told to keep your mouth shut at the dentist's office.  I think for a second about informing my mom of the irony, but decide that another word at this moment probably will not be the best of ideas.

The door opens, sure enough, the hygienist has now brought the dentist into the room, who proceeds to give me the same speech about brushing, flossing and dentures.

Common sense would have probably dictated that I not repeat the dentally offending statement. But I am thirteen years old, I have no common sense.  Out comes the same declaration of unfamiliarity with dentures or my possible affinity for them.

My mom saves me from myself, grabs me by the back of the shirt and proceeds to bull rush me out of the dentist's office with all of the love and concern of a bulldozer.  The 30 minute drive home was one of the longest thirty minutes in my life and wherein I honestly believe that I was going to be sold to gypsies.

I am not sure to this day what is more dismaying to my mom, whether it was the fact that I repeated the statement to the dentist or the fact that my father agreed with declarations regarding dentures.

So, when I say E comes by it honestly, he really does.

I am sure I will be told to Say [blank] in the future by E; I'll smile and politely decline his request and implied message.

Thanks E for being the apple that didn't fall too far from the tree.

Thanks for reading; more to come.

A trip to the (movie) theater

Yesterday, we decided to go see Alvin and the Chipmunks - Chipwrecked.  E had enjoyed the two other Chipmunk movies and we believed this would continue with the Chipmunk's third installment.

A typical movie experience with E is both entertaining and exhausting.

We start our movie watching experience with a trip to the concession stand.  No movie experience would be complete without popcorn.  Of course, this being a story about E; the enjoyment of popcorn itself is unique.  If you ever wanted to enjoy popcorn that was been pre-moisted for easier chewing, one must share popcorn with him.  E loves to lick the salt and butter off the popcorn and return the "used" kernel to the community bucket.  Obviously, as a family, we continue to enjoy "fresh" and "used" popcorn without any squeamishness.   A secondary aspect of sharing popcorn with E is the popcorn being strewn about our general seating area.  After a movie, our seats are similar to the feeding of pigeons. I am sure the theater workers are not fans of E's popcorn eating style.

We usually don't see movies on the day or in the month they open.  We wait for a quieter time of day far from the release date.  Yesterday, there were only three other families enjoying the movie.  Less is more.  I could be a bit more relaxed (but I rarely am) when there are fewer people in the theater.

Once the trailers start, E settles in and begins watching.  There is nothing like a good set of movie trailers.  E's iPod is loading with many movie trailers.  He is a big, big fan.  In fact, one of the two quietest of moments with E during the movie watching experience is the trailers before the movie starts.  He will usually identify some aspect of a trailer that he likes. Whether it is the fact that it is a Pixar or Disney production or involves characters from other films he's seen, trailers are mini-movies to be enjoyed.

After the movie begins, it becomes an active movie watching experience.  Between holding the popcorn bucket, make sure he isn't bouncing out of his seat like Tigger, handing him his bottle of water, going to the bathroom, giving him his iPod or telling him to whisper, our movie experience is full contact.  Yesterday was no exception.  In addition to the foregoing activities, E discovered that when he leaned back slightly in his seat it squeaked, which he took great delight in replicating over and over again.

E is what I call a multiprocessor.  He can watch a DVD, play a video game, listen to music and multitude of other things at the same time.  The cacophony of noise is tolerable by his family, but we try to not subject the public to it.  Thankfully, no one has ever complained about E's multiprocessing at a movie theater.  About half way through the movie, E tapped his head above his ear, which is E-sign for iPod.  I handed him his iPod, while juggling the bucket of popcorn, water bottle, his hands and arms and stopping him for launching himself skyward.

The last couple of movies we have gone to a theater to see haven't been good choices.  E has ended up E-signing that he is done as well as shrieking at the top of his lungs.  Taking our cue, we have left the movies early.  I still don't know how the Smurfs got back to their village or how Puss in Boots' adventure ends.  Yesterday, we didn't leave the movie early.  We stayed through the end.  However, E took advantage of the dark, quiet, comfortable theater and took a nap.  Not the cheapest or most expensive nap he has ever taken, but somewhat disappointing given that when he naps he doesn't usually sleep well that night.  Normally, I would take advantage and take a little nap myself, but there is no way to sleep with the squeak of chipmunk voices through digital dolby sound.

Sandi and I finished the movie while E napped across three seats, the ends occupied by Sandi and I.  She got to deal with his snoring, I got his slightly wet boots.  I woke E as the credit begin to roll.  This is the second quietest moment of the E movie watching experience.  Yes, we are that family that sits through to the very last frame of the movie credits.  Here is a pics of E enjoying the credits.  I am not sure where his fascination with credits evolved from.  My guess is the music combined with the order of the words is the draw.  E has even invented a game related to movie credit watching.  We compete to find all of the individuals who contributed to the movie production named either Thomas (signified by E pointing up and saying Ta-Ta-Ta) or Arthur (signified by E again pointing up and saying Ar-Ar).  Sadly and incredibly, no Thomas or Arthur were found yesterday.

No movie experience would be complete without playing a video game.  This theater was no exception to the modern movie experience contained a small arcade.  After one driving video game, E was satisfied with his Sunday afternoon.  We left the theater with a content, happy and rested E.

Thanks E for changing movie watching from a passive activity to a full contact sport.

Thanks for reading; more to come

Autism Definition Divide - Time to Rant

Since my last entry was a little heavy, I was going to write about something a little lighter.  However, there is something that is brewing within the medical community that I believe I need to write about.

Apparently, the medical community needing to justify the expense and time they committed to educating themselves and obtaining their all-powerful MDs, Ph.Ds, Psych.Ds.,  the need to review and revise the criteria for autism.  With all due respect to these individuals, I think the medical community is missing the point.

I thought the medical community took the Hippocratic Oath wherein a physician pledges to Do No Harm.  Given the likely effect of this re-definition, harm will be done.  Families and individuals that are currently getting services may lose those services that are vital to them.  Losing something that is good or valuable seems harmful to me.

Autism Spectrum Disorders.  That is the title given by the medical community.  If you title a disorder with the word Spectrum in it, you have already decided that there will be a range of individuals that fit within its definition.  Does limiting one end of the Autism Spectrum change the fact that the deficiencies that those higher functioning individuals impacted autism affect their daily living?  Do we exclude individuals act typical because they aren't atypical enough.  Isn't that merely adding insult to injury?  Further, if you change the definition as to who fits within this Spectrum, then parents who advocated and worked with therapists and schools as well as acquired the proper technology to give their child every opportunity and tool to be able to communicate and become part of their community have they done so to their detriment.  You end up punishing those who put in the work to maximize their child's potential.

E was originally view as having limited mental capabilities.  However, Sandi and I and luckily, a psychologist now with the University of Illinois-Chicago, his first grade teacher and instructional aide looked beyond the curtain and saw a child with a quick mathematical mind and wit.   Will the fact that Sandi and I have advocated for E to ensure he continues to get the education he is entitled remove him from a Spectrum diagnosis?  I doubt and hope not.  Given E's other challenges, I suspect he will remain somewhere on the Spectrum.

I have to be honest.  I am not sure what the ultimate effect of the criteria change will have on autism numbers.  Will it exclude individuals that are currently diagnosed?  Do we change the diagnosis of those "on the bubble" individuals that fell into the previous criteria, but are excluded by the new?

Getting back to my original point, does it matter the extent or amount of impact to an individual's peer relationships, inflexible adherence to a routine, or delays in communication or imaginative play?  Whether you lose by one or hundred, you've still lost.

Analogy time:  If an individual suffers from a physical disability (say, paralysis in both legs) and with therapy and technology and able to walk, does he get a new diagnosis?  Without technology and therapy, he can't walk.   But from conventional definitions, a person who can walk may not be paralyzed.  If a person is unable to communicate, he is then limited in his ability to develop peer relationships.  Given that person a device that allows them to communicate, do we now remove that met criteria and say that he is no longer on the Spectrum?

Moreover, developmental and physical disabilities are not diseases.  They are disorders.  A flu is a disease.  A cold is a disease.   Remove/destroy the virus living in your body, you no longer have a cold or a flu.  Diseases are definitely more black and white.

Second analogy time:  If an alcoholic goes through therapy, rehab, a 12 step program and stays sober, society still calls them an alcoholic.  They still are have substance addiction disorder.  Society applauds their hard work, but doesn't exclude them with through use of a definition.  Additionally, if a person with ADD/ADHD takes an appropriate medication thereby alleviating his systems, the diagnosis of their disorder is not changed because they no longer exhibit the symptoms that were the basis of their diagnosis.   Such reasoning is circular and invalid.

[SARCASM ALERT]:  Thanks, bulk of the medical community for being so understanding and following the Hippocratic Oath.

Thanks for reading; more to come.

[Sorry for the rant]

Marathon of life

Life is a marathon, not a sprint.  I have used this statement to describe many aspects of my life as well as E's life.  Many times there seems to be this unfocused rush to be the first.  I understand that there is a benefit to being first.  But first isn't always a good thing.  For instance, the origin of the marathon comes from a Greek story about a herald named Phidippides ran 26 miles from Marathon to Athens to announce the Greek Army's victory and died on the spot.  I'll write that again he died on the spot.  He was the "first" to run a marathon.  

I personally have never run a 26.2 miles nor do I have any intention of doing so.  I have been told that in running a marathon you discover the person you are.  I know the person I am without such a run as every day for E, Sandi and I is a marathon.  While I do admire people who attempt to run and finish, their efforts are limited at most a six hour run on a particular Sunday and the daily training runs leading up to the event.  Our family exerts that effort every day without training, without the benefit of being able to quite and without the benefit of a medal being presented.

Sandi has run marathons.  I have never asked her thoughts about this next assertion, but I am pretty sure that she would agree:  our every day life as more intense, more tiring and requires more effort that any of the marathons she has participated.

I don't begrudge runners or others' athletic endeavors.  They should feel proud of their accomplishments, but understand that such achievements are limited in the reach and effect in the lives' of others.  A marathon runner may inspire others to run, but do they inspire others to live?  Does running give others motivation to become independent?  Does running give others skills to become employed?  Does it give others the ability to learn and communicate?  Obviously, the answers to these questions are NO.

Similarly, I don't begrudge parents with neuro-typical children.  They have their struggles and challenges albeit from a different scale and degree.  They have similar worries, just a difference in the matter of degree.

Parenting is a tough job, regardless of the child.  It is a job that you are not compensated for financially.  The benefit is the result and seeing your child(ren) grow to an independent adult is the compensation.  This compensation is all the more sweeter when you child has special needs.  We celebrate the mundane and ordinary.  We don't celebrate pee-wee football victories.  We celebrate when E has a good day at school.  We don't celebrate being my child being named to an all-star team.  We celebrate when E has gotten dressed by himself before school.  We celebrate things that others may take for granted where no task is too small, no achievement too minuscule.  For us, it is all a matter of perspective.  We celebrate the path our journey takes, but we still keep an eye on the destination.  

If I did do a marathon, first, hell has frozen over, and second, I would live in the moments between the start gun and the finish line (mostly because I would be afforded that opportunity, because I probably would be walking most of it).  It is the moments between start and finish that I would maybe for a split second understand challenges that special needs children face.

The playing field of life is not equal or level.  That is an incontrovertible fact.  However, it is the determination of the participants to live life and equal the field of play through sweat and tears that makes all of the difference in their lives.

Thanks to all who enjoy the journey over the destination.

Thanks for reading; more to come.

Life between Disney visits/Winter Blues

E is in a funk. Last week, E took a bit of a woe is me attitude. Sandi and I, and school especially, Miss Sharon, his communication therapist, asked him why was he so blue. Apparently, there is little in life to be excited about until his next adventure (presumably to a Disney Park).

About a week after returning home from our West Coast adventure, E was already asking to jet away via his favorite airline, United.  I counted the number of days we were away, 11 days and compared those with the number of days we had been home, 6 days.  I explained that we were probably staying home for a while and his next adventure would have to wait.  Suffice to say, he was unhappy with me, my analysis and my statement.  E signaled his disapproval with a fist slam and grunt.

Returning to school after winter break is hard for all students, especially those in the Midwest (and more so when impacted by autism).  It is cold, sometimes snowy.  Going outside requires being bundled up with layers of thinsulate, scarves, hats etc.... Night falls around 5:00 and mornings don't break until after 6:00.  Winter blues weigh heavily on all of us, but probably none more than students.

I remember as a kid E's age that life until the next break (winter, spring, summer) was slow, excruciating day by day crawl.  I waited with bated breath for the next long weekend and maybe for the possibility of a snow day for a break from the monotony of school.  The period from January to spring break was an exhaustive period of time, just waiting for the weather to break when winter coats, hats, mittens/gloves could be shed and we were a little closer to spring break.

As a kid we never went any where during breaks.  I think I can count only a handful of vacations my brother and parents took.  Most trips were day trips when my dad could get coverage for the hospital.  I think my perception of vacations was framed by my classmates' excite more than my own.  Breaks from school were spent at home, causing damage or mayhem to our home and the neighborhood with our fair share of water balloon fights, baseball and basketball games and food fights (in the kitchen) [Note:  Food fights are not particularly enjoyed by my parents, especially, when there is a pizza stuck the kitchen ceiling].

For E, we have often traveled for each break.  At 12, I had only been to five states and never outside the country.  E attained that level of travel by age 4.   I can see why his expectation is that he should be traveling as he has done so most of his life.  E has been out of the country twice and visited 19 states.  The only reason I can say that I match his travel profile is because I took him to all of these places.  I know that E would gladly trade all of this travel in to go to Disney or as he says.....Dis-N.

Our recent adventure to Disneyland was born from our spending Thanksgiving with my parents.  E walked up to my mom, with a Disney movie in his hand, leaned his head onto hers and said Dis-N.  My parents love these exchanges for two reasons:  1)  There is no thing they wouldn't do for E.  2)  The neuro-typicalliness of exchange know that E is a schemer like I was.  [I am reformed now].

My mom trying to decipher the context looked at me.  I said "Disney movie", which she then said to E.  E shook his head NO.  I then said "Disneyland", which my mom repeated to E.  A smile came across E's face.  My mom continued and asked E, "Do you want to go to Disneyland?"  E smiled even bigger and responded with "Puh-eessss".  There are very few motivating points to get E to use his limited word approximations, but asking E if he wants to go to Disneyland will ALWAYS provoke a PLEASE.  My mom hugged E, turned her head in my direction and commanded that E was to go to Disneyland.

No problem; I'll just fold my arms, blink my eyes and magically transport so to Disneyland.   What my mom should have commanded was that E was to go to Disneyland on his next break.  E takes some things literally.  Saying E could go to Disneyland without the next break qualifier was the equivalent to saying to E, go get your shoes on, we are going to Disneyland, right now.

After clarifying when he would be actually going, the eventual tantrum regarding the delay and recovery, E had something we realize he needed, but often forget to put in place:  a reason or motivation to continue to work.

E has to physically work hard to accomplish what a typical 12 year old accomplishes.  He has to type just about everything he wants to communicate.  E has a shorthand vocabulary that allows him some shortcuts in communication, but more often than not, he has to type.  He is not a typical kid even under the broad sense of the term, but that doesn't mean he won't respond to typical motivators.  Have we used a trip to Disneyland/DisneyWorld as a motivator?  Absolutely.  Trips to Toys R Us, GameStop or Best Buy?  Yup.  Positive reinforcement is a great tool for conditioning behavior and we use it A LOT.

E has been to Disneyland/DisneyWorld or both every year he has lived.  Yes, he is a bit spoiled, but it is hard to deny that for E, life between Disney visits is all about work and overcoming his challenges.  He lives for that long weekend or week, where he can enjoy being a kid, seeing the characters, enjoying the attractions and room service.  I think that E will always love his trips to Dis-N and given the ear to ear smile to brings to his face, Sandi and I will too.

Thanks E for working so hard 48+ weeks a year and earning those trips to Disney; don't worry, one is right around the corner!

Thanks for reading; more to come.

Why Can't Kids........

E will often start questions with those three words, usually as part of his argument to justify some inappropriate behavior.

As part of the curriculum of E's school, the students go swimming two times a week.  The first day at swimming last week, E decided that he would shed his trunks.  His attempt was cut short and had to sit out the rest of the swim period.

After such situations, Sandi or I will talk about why he thought that was appropriate.  As part of this conversation, E asked Why can't kids swim naked?  Sandi responded that kids can't swim without trunks and that no one really needs to see that.

This got me thinking as to other questions E has asked.

Why can't kids live at Disney?

Why can't kids play the Star Wars games at the casino?

Why can't kids skip breakfast and go right to the Magic Kingdom?

Why can't kids stay up all night on a school night?

Why can't kids........  I like the fact that E challenges the status quo.  He may question authority and advocates, but he does in a unique way.  His questions asks Why Can't Kids, not Why Can't I.  He advocates for everyone, not just himself.  I don't know the origin of this style of advocacy.  He has heard me make arguments advocating for this position or that position, but I don't think I have ever advocated quite like he does nor as often.

The prevailing thought is that individuals impacted by autism don't understand the world around them and don't often consider the other people around him.    Like E's drive to challenge authority, he challenges that notion constantly.  It is that innate need to question and challenge that makes him unique and so difficult at the same time.  Often he will ask a question that Sandi and I have to take a minute or two to come up with an answer.  I hate saying "because" or "because I said so".  They were irritating to me as a child and I promised myself I would never use them with my kids.  Sandi and I don't soften or dumb things down when discussing matters or issues with E.  We speak with him as any parent would speak to their twelve year old.  I don't think it's an understatement to say he knows more than we think he knows.

In a world of stereotypes, I like the fact that E shatters the typical notions of autism.  Yes, he is good at math, but is that because of the typical stereotype of being impacted autism or because of the typical stereotype of being asian.  He loves motion, roller coasters and speed.  Is that because of autism or because he is almost 13 years old.  He is unable to talk, but speaks volumes.  E is an atypical autistic.  He challenges as much as he is challenged.  He acknowledges his difference, but still lives the life of a typical 12 year old.  We rarely deny him the opportunity to live, for fear I will hear a question beginning with those three words............

Why Can't Kids.........

When E asks Why kid's can't........, I smile knowing that kids, especially E, can.

Thanks E for showing everyone that there are differences to everyone (disabled or not).

Thanks for reading; more to come.

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