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.