Perspective

Last weekend, E, Sandi and I traveled down to Champaign to visit Ariela and Shoshanna.  While there we were able to see Caroline, who used to travel with us and help us out with E.

We left Saturday morning for Champaign; the drive is a two and a half hour drive.  I am surprised that E's face didn't cramp as he smiled the entire duration of the trip.  E loves spending time with Ariela and Shoshanna and spending time with them a college is even better.  Adding Caroline to the mix only makes the adventure a veritable trip to Utopia.

We arrived at Champaign in about two hours.  I think at some time during the trip the flux capacitor was activated and we traversed through time shaving a hour half off the drive time.

Saturday, we spent the afternoon with Ariela and Shoshanna and finished the night with dinner when Caroline joined us at Houlihan's.  After dinner the girls walked E, Sandi and I up to the room to say good night.  E was under the impression that this was going to be a giant sleepover pulled Ariela, Shoshanna and Caroline to lay down for the night.  To see E fall asleep with a grin from ear to ear made reminded me  of the importance of creating social opportunities for E.

We spent Sunday again with Ariela and Shoshanna, going to the movies and enjoying all of the exhibits at the children's museum.  Sandi left for home as she had to work Monday.  E and I stayed the night and took the amtrak train to Chicago on Monday as he didn't have school because of President's Day.

As good as last weekend was and how well he did with his social opportunities, this weekend has a disaster.  Multiple temper tantrums, anxiety, teeth grinding, with all three occurring at once.  It was a weekend where Sandi and I had to practice patient assertiveness.

In reviewing the two past weekends, they couldn't have been more dichotomous.  I suspect that every parent has experienced similar events, however, probably  not to the degree or severity that we do.

I was recently speaking with someone about E.  I said that Sandi and I were lucky.  He looked at me as if I had three heads.  He must have been thinking, you're lucky?  I continued that I have a son who wants and craves interaction with people, a son who has an innate ability in math, a son who is highly observant and takes great delight in communicating his thoughts with limited verbal ability.

So, when I have weekends like this weekend, I have to step back, take a breath and remember what makes E different.

Thanks for the good and bad weekends that give me perspective and reminds me why I am lucky.

Thanks for reading; more to come.

Routines and Schedules

Many individuals who are impacted by autism benefit from schedules and routines.  I have never thought of E as being an individual that needs picture schedules and highly structured routines.  E has always been a go with the flow kid.  Throughout his first five years of school, schedules were prepared and laminated.  We never incorporated these schedules into his day to day life.  However, seeing how his current school uses these schedules is vastly different and appears to give E a sense of world around him.  These schedules instead of only being a roadmap of the days events are also used as a tool for positive reinforcement and encouragement.

This got me thinking.  Do individuals without any disabilities unconsciously use schedules and routines?  Does adherence to our schedules gives us validation in some way?

Routines and schedules- everyone has them.  Some are overt; others occur by circumstance or habit.   For instances, people get into a routine of the route they get take to work; taking the same path and leaving at the same time each work day.  These routines are imprinted subconsciously on the commuter's brain.  Based on the commute E and I have been doing for the past year, I know by what time it is and where we are on our commute how early or late we may be for school.    So the answers to my above rhetorical questions is yes on both counts.  Completing the same task/action at the appropriate time is a highly motivating reinforcer.

I am fond of developing paradigms to explain people and their actions.  Some of these conception behavioral models have borne themselves true over years of observation.  Others have required some refinement.  One day I'll have to post a blog with some of other my theories.  

Neurologically, no one is absolutely sure what occurs in the brains of individuals impacted by autism.  With E, there is a need to constantly remind him of what he needs to do during what is a routine task, such as getting dressed, going to the bathroom etc.  Some days E requires less oversight than others.  I am constantly prompting E on what he needs to do next.  I do give him some time to do what needs to be done next before I prompt him.  The simple routines that I take for granted such as getting dressed, carrying food from counter to kitchen table are seemingly lost each night.  It reminds me of the Adams Sandler movie, 40 First Dates, wherein each night the previous days events are lost to Lucy.  The difference is that E can remember things that don't occur regularly.  He still knows the locations of all of the elevators at Northbrook Court even though we haven't been there in months.  He knows the location of all of the Starbucks in the area even though I rarely go to Starbucks.  Can a theory for neurologically what occurs in E's brain be identified?  Maybe.  I just haven't been able to hypothesize why his long-term memory is so developed, but his short-term memory and ability to create routines is impaired.

Recently I was prescribed reading glass for a night when my eyes tire and need a little more assistance seeing the computer screen, book or whatever is within 18 inches of my eyes.  As E falls asleep, I usually have an iPad in my lap and be reading or researching something on the web with my reading glasses perched at the end of my nose like my dad.  After about of month of wearing my reading glasses, E won't lay and settle down for the night unless my glasses are on.   On those nights are am not reading, I still have to put my glasses on.  It is a curious routine that he has created.  However, once those glasses are on, he'll usually fall asleep within 20 minutes.  (However, E staying asleep still alludes us most nights).  So obviously my glasses signal something within E that it is time to go to sleep.  If E doesn't check to see if I have my glasses on, I announce and show him that my glasses are on.

As to how this routine got established will likely be a mystery, however, the effect of the routine is unmistakable.  

While the schedules and routines established by his school place increased demands and expectations on E, they also provide him with something that typical individuals take for granted the ability to anticipate, plan and complete a "scheduled/routine" activity.  It is unfortunate that as a parent I am often caught up on what he should be doing, learning, eating and the like.  Instead, I should be focusing on what E needs in order to navigate the world around him and its social standards. 

Thanks reading glasses for providing me some (in)sight.

Thanks for reading; more to come.

It takes a village, part 1

With all of the writing about E and our life, I thought I would describe the various people in E's life.  A kind of index of the people who will from time to time be mentioned in this blog.

Obviously there is E.

E -
is currently 12 years old.  Goes to school at the Turning Pointe Demonstration School in Naperville, Illinois.  He has other health issues such as an immune deficiency (which he gets IVIG treatment every 4 weeks and consists of a three hour IV infusion), a growth deficiency (which he gets a shot every night which I give him), Worster-Draught Syndrome (which is a mild form of cerebral palsy affecting the hands and mouth muscles), a seizure disorder and, of course, autism.  Other than that he is a typical pre-teen boy.  Likes girls with long straight hair, likes to play tricks and be rough and tumble.

Sandi -
is my wife and is currently a wound care nurse.  She will be starting a new job at Lutheran General Hospital in Niles very soon.  Sandi and I met at Marquette University where we both attended.  She and I started dating when we were sophomores, got engaged when I was in law school and have been married for 15 and a half years.  The how we started dating is somewhat humorous and one day I may write about it.  In addition to her nursing degree, she has various certifications in wound care as well as a master's degree in Health Law and Policy.  She often refers to herself as the Nag of the Northshore.  I agree this nickname is often accurate.

Nan and Kuya -
there are my parents.  They have retired to Vegas, which is now a favorite place for E to visit.  I used to call them Mom and Dad.  However, when my mom started to sit for the daughters of a friend, the only way my brother and I could get her attention was to call her Nan the name that the girls called her.  My dad name of Kuya is from a Filipino tradition.  Kuya means oldest son.  There is a hierarchy within each family ranked entirely based in age.  If you are the oldest, life is pretty good since all of your siblings MUST obey you no matter how trivial the order.  If you are the youngest, well, life pretty much must suck.  Again, the girls began calling my dad, Kuya, and to get his attention my brother and I started call him Kuya too.  This is very atypical even in a Filipino household.  They are typical grandparents in that they indulge E's every whim.  Sandi and I try to temper it, but understand that's the grandparent prerogative.

Ed and Annette -
Ed is my brother and is a year old than me.  His wife is Annette.  They also live in Vegas near my parents.  They do a lot with and for my parents.  With all of my efforts focused on E, I am not sure I could do as much as they do for them.  E attacks his Uncle Ed like a play set at a park.  Uncle Ed is something to climb, swing from, slide across, hang from and otherwise run to and jump on and off until both are out of breath.  Ed has a nickname in our family as well.  His nickname is Do.  Auntie Annette is a surrogate mom when Sandi isn't around because of her work.  Often E and I will travel to Vegas before and stay longer than Sandi will.  Auntie Annette is always there to share her meal, snuggle or provide that maternal touch.

Shaoul family -
This family consists of Uncle Saul, Aunt Julie and five daughters, Rebecca, Alyssa, Shoshanna, Ariela and Shira.  They have more or less adopted us into their family.  If we are ever in a pinch, we know we can always call a Shaoul.

• Uncle Saul - E has a continuing war with Uncle Saul over dominion and control of the TV remote.  When we visit, there is usually some sort of tug of war over physical control of the remote and TV.  With the exception of the Superbowl and a Bulls playoff games, E wins each battle, but not after Uncle Saul gets an earful from Aunt Julie and one or more of his daughters.  Being the only male in a family of seven, he has surrendered having an opinion and is used to seeing one or more of his daughters roll their eyes to the back of their heads.
• Aunt Julie - is the ultimate caregiver.  Nothing is out of bounds for E when we are with Aunt Julie. I often get admonished when I discipline or impose structure upon E when we are at Aunt Julie's.  The usual response from Aunt Julie to my parental edicts to E are this is my house he can do what he wants.  E loves to visit Aunt Julie for obvious reasons.  He will often eat foods at Aunt Julie's that he will refuse to eat at home.  He is a complete suck up to his Aunt Julie and of course she eats it all up.
• Rebecca - "the oldest one" was a college when we were adopted by the Shaouls.  She doesn't live at home any more.  E intermittently interacts with Rebecca and often catches her by surprise when he decides it is time to interact with her.  He probably has usurped many of her DVDs with her being surprised how many of her DVDs have been liberated to his collection.
• Alyssa - "the social one" was hand selected by E at camp one summer to be his one-on-one.  He picked her out of a crowd of other counselors.  Alyssa has traveled with us on our adventures to Florida and New York.  E loves to hear Alyssa sing and will often laugh as she bellows out of tune (describing it out of tune really doesn't paint the auditory assault her singing inflicts on anyone within 5 miles of her).  He refers to her as his Lyssa and will often walk around the house carrying a picture of her to let me know he would like to see her.
• Shoshanna - "the smart one" is the older of the twins.  She has also traveled with E to Disneyland.  She watches cartoons with E, plays games and.  E refers to her as kind, but tough.  She is studying to be a teacher and I think E admires her intellect as he will often listen to Shosh and I discuss some academic, political or social aspect of the world.  E is often seen sitting between Shosh and her twin when we visit their home.  He expects Shosh to identify any and all of the characters of the videos he watches with her.  She hasn't ever gotten one wrong.
• Ariela - "the maternal one" is the younger of the twins.  Ariela has done the most traveling with E with trips to Florida, Arizona, Nevada and Bahamas.  She is the most like Sandi and can be often found sitting with E reading a book, playing games et al.  She mothers E as Sandi does.  It is almost frightening to travel with her and Sandi, because I end up hearing things in stereo.  E refers to her as his Relda.  He will often walk around the house with Relda's picture too.  Relda is a go to person for Sandi as much as E.  
• Shira - "baby" is the youngest of the daughters.  Shira too has traveled with E before.  E likes to visit with Shira when her friends are over and he can become the center of attention among senior high school girls.  Shira is most similar in personality to Alyssa.  E knows he needs that socially minded person to help him be social with other people.

Kelly -

Kelly was E's instructional assistant for fourth grade.  She was instrumental in helping E transition to fourth grade.  She has a special needs sister and her and E clicked instantly.  She is a special needs teacher and works with middle school children.  Because of her family, she innately understands E, his challenges and his needs.  E's success in fourth grade was two fold:  Kelly's efforts and a very accepting and understanding Fourth Grade general education teacher.  

Aly -

Aly is a riding instructor who taught E how to ride horses.  She normally teaches her students to compete in the top circuit English riding competitions, but has an uncanny ability to teach students with special needs.  E was one of a few special needs children she has taught over the years.  Aly also pitches in and watches E when we need help.  E calls her his shadow.  I am still not sure how she get this nickname.

Me -

I don't think in any previous posts I have really talked about me.  So here goes a very brief description.  I am the youngest of two.  I grew up in a small town in Wisconsin.  My brother and I are half-Filipino and half a mix of various European ethnicities.  I have a BS in Accounting, a law degree and just received a MS in Computer Science.  I practiced law in the Loop for 11 years, but when the real estate/banking collapse occurred in 2008 I was laid off.  I began practicing part-time on my own, while being primary driver and caregiver to E as well as getting a Master's.  E (or as I refer to him Mini-Me) and I go on as many adventures as we can schedule.  E knows the limits of which he can test my authority and listens to me when we are out and about without Sandi.  In terms of entering back into the workforce, that is on hold for now.

There are other people I will need to discuss in a future post.  Certainly School Staff and other teachers, therapists et al. who have made a major impact on E's life.  So if I haven't written about you yet, your time will come soon.

They say it takes a village to raise a child.  In our case, it is a small village, but it is dedicated.

Thanks for being a part of that village.

Thanks for reading; more to come.

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