Overthinking it all.

As I started to embark on this new writing direction, a flood of ideas came to mind.  I did a couple of drafts of different ideas.  These drafts are close to what I like to publish, but lack something that make me comfortable publishing it. 

Then I got to thinking.......Do these drafts lack something or I am overthinking it?

Overthinking......it is something I have always done.  I have never been accused of underthinking everything.  My father made an interesting observation a couple years ago about my thought process.  It went something like this.......he said you think fast.  Very fast.  You see almost every permutation of a situation.  You worked it thought your brain and come to a conclusion or decision.  The frustrating part for people around you is that when you go to explain your decision making process, you skip through all or a lot of the parts of that process, and present your conclusion or decision.  And people get frustrated that you do not share your thought process.

Yes - this is true.

But he went on.......then when you do share your thought process, it is apparent that you think differently than most people.   

In fact as I sit writing this, in my mind I begin to see how each word, sentence and paragraph create this 3D flow chart in my mind.   Does this mean that I know how I am going to conclude this post.  No, but yes.  

But is seeing all possibilities necessarily a bad thing?  It can be when it inhibits performance or postpones in making a decision.  

So in overthinking what I write, how I write, how it will be perceived, et al., I allow my words to become a prisoner of my anxiety-ridden, completely worrisome, overthinking nature.  

This post hopefully will motivate me to set aside that innate nature and put my writings out there.

Thanks for indulging my pseudo-cathartic overthinking.
As always, thanks for reading; more to come.

A New Direction

Normally my writings have been about E, life et al.  Recently, I have pondered expanding the range of my writing.  Political, historical perspective, scientific, and even fiction are areas that I think I'd to explore.

I have more than a few topics that I want to write.  I initially worried that this shift in the subject matter writing will not fit the title of this blog and, more importantly, not fit me.

I named this blog, A View from the Periphery, because of the seemingly periphery that a life of an individual and family impacted by autism leads.   Living in the periphery is nothing new to families impacted by autism; staying in the back of rooms for an easy escape, trip to the bathroom, etc...  Trying to subtly blend into the world, being just enough in the world to experience it, but not so much as to affect it.

In thinking through how the title fits with the new direction, I think the title still works.

Periphery means the outer limits or edge of an area or object.  

A view from the periphery is a great metaphor for how I think, write, act and experience the world.  

Thanks for indulging my new writing direction.

Thanks for reading; more to come.

Daylight Savings Time

Daylight savings time (DST) - you are nothing but a cruel heartless transition for families impacted by autism.  Well - that may be a bit of an exaggeration, but that statement is true nonetheless for my family.

Yesterday's spring forward was more than a bit dysregulating for E.  He woke up fine, but as the day progressed he got crabbier and crabbier.  Nothing seemed to put him in a good mood - not his favorite music, not his favorite electronic, not a movie, nothing!  It seems that the leap ahead is devastating to his routine, his psyche and his life.

The pinnacle of his dysregulation crested from 3:30 to 9:00 when he finally went to sleep.  Or was fake sleeping because he was up within 15 minutes of being asleep and jumping onto my side of the bed.  Even sleep cannot conquer the monster that is DST or as I am now renaming it - Day of Substantial Tantrums.

He complained about dinner, about his ipad not having battery power, about DVDs, about well, everything. 

DST brings about the lowing of his frustration tolerance; messes with sleep; which in turn lows his seizure threshold; which in turn lowers of frustration tolerance more and it takes at minimum 2-3 days to get back to normal.

I was always told that the principle behind DST was maximizing daylight hours for farmers and those who worked outside.   It was necessary before the industrial revolution when society was agrarian-based.  With the advent of electricity, battery power, machinery, combustible engines, maximizing daylight is no longer a necessity.  Yet, an overwhelming majority of the United States still engages in the use of DST, which under every other circumstances, I would give a second thought about its use.  However, seeing and hearing E complain about EVERYTHING moves me to the category of why do we still do DST.

Here's the thing - I don't care if DST becomes our permanent time or if standard time is our permanent time.  Just as long as there ceases to be no more leaping forward/ahead and no more falling back.

All I really know as I type this post is that I am tired, from yesterday's crabbiness and altered sleep pattern.  Perhaps, I'll try and go to sleep sooner tonight.  Hopefully, E will stay in his bed tonight.

Thanks DST for adding a wonderful variable to our happy autism.

Thanks for reading; more to come.

I HAVE RETURNED

WELL - I AM BACK......

It's been a more than a years since I have written and posted.  I have decided to come back to writing this blog for a number of reasons, which will get into as a rewrite this post for the third time.  #worstcriticofmywork

So where have I been for the last three years........

I took on certain altruistic commitments and volunteering grew greater importance in my non-E awake hours.  This volunteer commitment only increased when we moved closer to E's school as an hour of commuting to school was taking its toll on E.  

We decided that by moving closer to school would provide more opportunities for socialization and therapy, both of which turned out to be true.  Over the last three years, Sandi has started and finished her Master's in Nursing Degree as well as taken her boards and passed.  She is done with school and is enjoying her new role as health care provider and consultant.  Working towards her Master’s took her out of a lot of the day-to-day E-stuff.  Her weekdays over the last three years went like this:  Wake up, Drive to Work, Work, Drive Home, Shower (got to get rid of the MRSA), Eat, Study, Sleep, Repeat.  Her weekend days were Wake Up, Study, Eat, Study, Eat, Study, Eat, Study, Sleep, Repeat.  My primary job was to make sure that E's needs did not topple into her academia/professional world.  It worked for the most part.  An unintended secondary job was proofreading papers, making quiz cards and becoming more familiar with pharmacology, anatomy, nursing theory, pathophysiology et al than I care to be.

I balanced my time while E was at school and Sandi was at work between working for a Foundation in a variety of roles and being a member of various committees.  This volunteer work took up a great deal of my time and also contributed to my lapse in writing.  

When E was not at school, we traveled as usual.  E and I also went on trips to California, Nevada, Florida, New York, Minnesota, and Wisconsin.  We of course had our usual fun at various theme parks.  

I also went to Texas to see my bud, Adam.  We ate and drank.  We worked on the ranch/farm.  I shot a 9mm handgun, an AR-15 and hit a 6" target from 200 yards with a sniper rifle.   I had great fun in Texas and am leaving in two days to visit again.

Sandi and I also were fortunate to have a getaway without E.  A long weekend in Vegas with my bud, Adam, his wife, Aliina, A.A. and her friend and, of course, pop-ins by my mom, my brother and his wife.

After four years at the school in Naperville, and seeing certain aspects of the school move in a direction that would not necessary service E’s needs, we decided to move E to a new school.  Being on the “inside” of how a foundation works was enlightening, I guess enlightening is a good word for it.  While I am glad I had the opportunity, I doubt that I will ever put as much time and energy into a foundation again.  Why?  Well, to put it bluntly, foundation work is a full contact sport.

I have transitioned myself from this volunteer work and decided to shift the focus of my part-time law practice to special needs advocacy and limited transactional work.  Basically, only what I can reasonably take on in the six hours E is at school.  When I am not practicing, I will be writing and taking care of the business of E.  And business will only continue to get more complicated as he gets closer to aging out of the school system.

So life got in the way of me being able to write this blog.  I decided to get back to it because, well, I guess I have more to say now given all of the experiences of the last four plus years.

Some of the forthcoming posts will be funny (at least I think they will be), insightful (again, at least I think they will be), thought-provoking (ehhhhhh, maybe), educational (probably), personal (always).

Thanks for hopeful joining me again in reading.

Thanks for reading; more to come.

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.