And another year with our "friend" Autism has passed by...

I was encouraged to write about our year dealing with Luis Joel's Autism.  I want to say so many things, but at the same time, I don't know where to start or in what language and form to say it.  From June 2014 to June 2015 to say our lives have been a cliche "roller-coaster," and to say it has ups and downs is simply an understatement.   Starting with my mom's passing, 2 trips to Puerto Rico,  1st year of Kindergarten at the FAC program, the 6 yrs old Intellectual/ASD assessment including the addition of a new "label," starting ADHD medication; plus, getting ourselves deeper into debt (like Puerto Rico and its national debt) in order to provide Luis with at least 10% of the therapies and medication he needs.  (Our health insurance still don't cover them and even though I love Obama, Obamacare doesn't help us either.) It's just a summary.

One thing I'm completely grateful to God is that Luis Joel is happy.  He is transparent, pure, and has the most beautiful and contagious smile you would ever see.  He loves his "papa" (dad.)  Loves his Ms. Denise (ABA Therapist) friends from school, teachers, daycare, and our neighbors.  He still doesn't know how to appropriately engage them, but you can feel and see the love and happiness irradiating from him every time he sees them.  This year I noticed that he is more vocal on his wants and needs, almost to a distinctive assertive and commanding tone when expressed.  He has no filter, he sees something and he concretely tells you what he sees.  He loves music, and you can hear him singing his favorite song as in "repeat" mode.  Luis has a very particular and funny sense of humor. I think he inherited this trait from "Guelo" who is able to find a funny comparison to every situation and every person he crosses path with. 

We still working with "poop" issues, if we have to report this specific in metrics, we would say he is 75% successfully potty trained.  Same with new foods and textures.  His new favorite is Cocoa Pebbles, he still loves his cottage cheese with peach and strawberry jelly (not together, though.)  Have a passion for everything Disney.  He heard the Aladdin song at the Disney Store once and til this day, he sings it all the time, and proceeds to tell us the date he listened to it at the store, what he was wearing, what colors clothes we were wearing and where exactly he was at the store when he heard the song.   He also mentions every birthday party he has been, too and if it happens that he's been to multiple birthday celebrations for a particular friend, he proceeds to tell you all the details he remembers from all of these events-recounting things that have happened when he was 2-3 yrs old. Usually, the details goes from color and detail description of each shirt, each of his friends were wearing, the cake, what did he do, if he had a meltdown, what Edwin did, or didn't do and so on.  It amazes me how this kid memorizes everything, details that can be non-perceivable to us.  What amazes me the most is how his brain is completely bilingual.  When we ignore him on purpose to redirect him into using the appropriate response or behavior, he start translating (accurately) his statement in Spanish.  When they say that Autism was like installing a Windows OS into an Apple infrastructure, they weren't kidding.  

From time to time, I worry a lot. I worried about him and everything around him.  Especially his friends from the Special Ed classroom.  They are also my kids.  One thing that we learned this year is how black and white the testing/assessment are.  Also, how soulless, and maybe pointless they can be as well.  The sad part is for resources and placement needs, they are a necessary evil.  I frequently feel impotent, powerless, but after you received the results from this test, and the person they are "describing" is a complete stranger to you.  You cannot recognize from those results a glimpse of the boy you know.   It like someone kicking and punching you in the gut and you need to gasp for air.  The most frustrating thing was trying to put some "color, joy, experience and anecdotes" to that report in order to inject a little bit of "life" to it, only to be shut down by the "ARD committee..."   

During the "not so good" days, when his stimming is uncontrollable or he has multiple meltdowns for different reasons, I start fantasizing what it would be if LJ was NT.  Especially when I see his friends from his infant days so grown up and successful in their different skills, academics and sports.  Now, at 6 yrs. old going on 7, the developmental gap is more noticeable.  To this day, it still takes my breath away and breaks my heart in pieces, every time I read in his assessment reports he is developmentally performing as a 3yrs old or as they labeled him this year "Intellectually disabled."    I see Edwin, and how well he navigates, his language skills, his writing and reading skills for a 5 yrs old and I often think that it is not fair that Luis has to work 5x harder or even more to just master some basics as recognizing his "A, B, Cs..."  But then, I hear him laughing at something Edwin did, or just singing at the top of his lungs out of the blue and come running into our arms for a spontaneous hug with the biggest smile on his face and a joyful squeaking noise, for Luiso and I to automatically say... "we wouldn't change him for the world."  God was so good to us sending us this beautiful boy to raise and shape.  He is our Sunshine.