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.  

Disbelief, Sarcasm, Irony and incredulity

It's been a while since I've taken the time to sit down and just write.  First, because as always, I don't think I have anything relevant nor "important" to say.  At the end of the day, life is hard for everyone and those who "matter" have already said (kind of) what they want to say and the flock have followed.  One of my favorite phrases to say, alongside "I love you more than I understand you," "It is what it is," and "One day at a time" is "everything have an audience."  But lately, I haven't seen anything regarding current events positions and views reflecting my reality and idiosyncrasy.  I don't belong to the 1% of privilege, I'm not White, and my European descendent genes are well hidden in the recessive realm.  I'm an educated, professional, woman, but English is my second language, (even though I have more vocabulary and grammatical knowledge than most English as a 1st language native speakers.) but I have a thick accent.  I work hard to lose weight, but I'm never going to be skinny nor without cellulite.  And the list goes on.  I "Lean In" but I refused to be a "bully" or have the corporate world take over my values, conscience and how I treat people.   I believe in empowering women, but I don't believe you have to be a bitch, and not only being a bitch, getting pleasure of knowing you're a bitch in order to receive the validation of being powerful.  In my "English as a second language" reality living in the US, I've never understood the word "Bigot" until recently.  The sad part is I've expected only the usual "White Boys Club" click-cliche to be the ones carrying the adjective, however, it is a woman who showed me the meaning of that awful world.  It even sounds evil.  I will not lie, I'm a social media junkie.  I read, and try to understand how what we see helps us to become a better world.  Maybe, because deep inside I have a true, romantic hope we're building a better place to our children.  Especially to those who are different, or "special needs" as we called them now.  As a "Special Needs" Mom I've learned to be humble, not to quickly judge, even though my Puerto Rican nature sabotage me in that sense, in particular when I see beautiful women, wearing a beautiful dress or outfit and then...flip flops...on purpose.  In the last couple of weeks, everything I've read in the news, social media, etc.  have left me so lost.  I thought I only have to deal with having an "identity crisis" by being Puerto Rican, living in the US Mainland, with US Citizenship, Spanish as my native language, overweight, not blonde, not Black, a Special Needs son, Christian, but not right wing, Democrat, but conservative, feminist, but not a bitch, nor want to climb the power ladder jeopardizing my believes and my responsibilities with my family, bold, but not boastful, and the list goes on.  I'm truly lost and haven't been able to read or see anything echoing how I feel.  What comes across as weaknesses, I see them as strength.  When or where the word humble got so misconstrued? Everything I've read kind of reflecting how I feel have a hidden agenda trying to sell me an opportunity to "sell" wellness, health and happiness.  Nothing is for free.  Everything has a price tag.  The debt keeps climbing, the pressure keeps rising.  Not even in the Special Needs World, I don't even know how to "play" the system to get my kid the assistance he needs.  Being honest doesn't help much, you see other kids with more income and more assistance.  We owe even the air we breathe and we are not giving our boy 5% of what he needs to prepare him to endure this world when he is older and his "quirks" are not longer cute.  I'm tired of seeing "motivational speakers" selling me their guidelines to be successful and happy when they've  never have to experience anything like the rest of us. (Of course, there are exceptions...) I'm not saying they haven't have struggles, but as the John Ham character in Tina Fey's "30 Rock" episode "The Bubble;"some of them showing in my "Newsfeed," lives in "the Bubble," where everything seems easy and attainable, just because you're "it."   Sometimes, I just want to become an ostrich and insert my neck deep inside the ground for a while and hide, but then, my big butt will be hanging and making it an easier target to get spanked. (and not in the sexy, "50 Shades of Grey" way...)  It is overwhelming to have this sensory overload of information, mix-messages, oxymoron views of what is right and what is not.  I just want to scream like Michael and Janet Jackson's 1994 video for the song "Scream."  If you feel like you belong to this X% of the population not falling into the 1% privilege, and not in the % who cares of the trivialities the World consider important, you want the World to become a better place, your work hard, you don't have a chip on your shoulder, nor the a sense of entitlement; plus, you don't care who went where, what luxury car, vacation, work promotion,etc. the neighbor or somebody post or went into validating their worth, care for the planet, how to be a good citizen, have respect and understanding for things, even those and things we don't understand, please shoot me a note, and let me know there still hope in the World, and like they say in Puerto Rico, to soothe the pain of their day to day "los buenos somos más." (the good ones are the majority...)  Please shoot me a note, I promise you I will not send you a "Gofundme" link, nor will try to sell you an "opportunity" to become your own boss.  I just want to keep believing, and to know I'm not the only one, (I know I'm not, I just need this line for dramatic purposes...) who is mentally and emotionally exhausted - but deep down inside, I just need to restore my believe that in my son's forever literal world, there will be hope and a "village" maybe not understanding him completely, but at least respecting him and giving him, us and all a fair chance to be.