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.

Winter Break

Hello all.

I know its been a couple of days since my last post but there are only so many hours of the day that I can write especially when E is off of school and at home.

As I previously wrote, we just got back from our west coast excursion to Vegas and Disneyland (the happiest places for adults and children, respectively).  We were gone for 10 days and there is still 8 more days left in this winter break.

Being out of town afforded me several benefits specifically, my parents taking care of dinner, checks and buying this, that or the other things E, my wife or I might want.  Thanks Nan and Kuya.  There is also another benefit in that there are two other sets of adults to engage and/or watch E.  This gives me and my wife several, randomly occurring ten minute breaks from our parental responsibilities.  Those random breaks are like gold when we are free to sit and watch E engage his Aunt Annette or Uncle Ed or my parents.  E will do a number of things to interject myself into a person's activity.

For instance, one night we were sitting around the dinner table eating pizza.  E sat right next to his Aunt Annette, pointed to her piece of pizza and started eating it.  Mind you she had already finished about a third of it.  E then proceeded to take a big old tag from her water glass.  My wife sat and laughed because this is a frequent event when she dines.  Aunt Annette, shrugging her shoulders, grabbed another piece of pizza and asked Uncle Ed to get her a glass of water.  After eating a third of that piece of pizza, she handed off to E.  E smiled and finished the two "slices".  All the while enjoying his time with Aunt Annette.  My wife and I were also smiling and continued to enjoy our untampered, mangled or usurped slices of pizza.

This is not to say that Uncle Ed did not get his fair share of E time.  My brother is a larger fellow, 6'4" and stocky.  E takes the opportunity to climb, jump, swing and hang from his Jungle Ed set.  Essentially, this routine starts with a full speed collision by E into Ed, who then lifts, holds, wrestles, tickles, contorts et al. E, who giggles throughout the course of this encounter.  I take these moments to watch, relax and just enjoy Ed's uncle time with E.

Because of E's extremely limited of verbal expression, he relies on my wife and I to interpret for him or technology to speak for him.  He is rather adept of incorporating technology to serve his communication goals.  My wife and I are adept at understanding his limited verbal express and unique gestures and translating them for my family.  My family is getting better at deciphering E speak, but sometimes they have a tendency to speak louder to E as you would observe a conversation between two people who don't speak the same language.  Again, it is another opportunity for me to laugh and joke.

Time with my family always comes to an end too soon and we are back home prior to the end of winter break.  We can't spend the entire time on vacation for many reasons.  Often we take the remaining winter break to schedule doctor's appointments.  Given the medical plan that E is on, E typically has to see his physicians of which there are six every six months.  So I try to follow a January/July schedule.  Like everything in life, sometimes it works, sometimes it doesn't.  This week we saw a smaller group of doctors, who have pronounced him in good health, but it still leaves a lot of free time.

While I do enjoy my alone time with E, there is a lot of time to fill during the day.  Given that the average temperature in Illinois in January is in the forties, there isn't much opportunity to plan outdoor activities.  So, the search is on for indoor activities.  There are a couple of options, such as arcades, malls, pools, visiting friends or museums, but these activities can't swallow up a whole day.  Well, at least they never have for us.  This week we have gone swimming, played at Gameworks and walked through Legoland.  I still have tomorrow to plan before our weekend regimen begins and I have no idea what we will do.

This next statement may sound counter-intuitive to you parents with neuro-typical children:  E misses school.  He misses the structure.  He misses his classmates.  He misses the hour drive to school.  He misses the teachers and the IBIs (aides).  School gives him an opportunity to be with kids who are like him and adults who understand him.  Even though I understand him, it isn't the same because I am his dad and that in his mind is part of my job.  On the last day of school prior to winter break, the IBIs gave all the students countdown calendars until school would start again.  All of his classmates were sad that school was going to be out of session for over two weeks.  I know the parents felt the same way, but for a different reason.  In the special needs community, every family member looks forward to school starting, the parents and the children.  If I asked E if he wanted to go to school tomorrow morning, he would immediately go, get his shoes and ask me or my wife in his special way to help him put them on and get off to school.

It will be a bittersweet day this coming Monday when E goes back to school.  While I love my time with E, I also enjoy (with a little guilt) my time away from him.

Thanks to all the hardworking special education teachers, aides and therapist that provide a safe, fun, educationally challenging place for children impacted with developmental disabilities to learn and become part of a community.

Thanks for reading; more to come.