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. 

Lent Edition: Day 9 "Guilt"

Day 9: Guilt – I am loved by Jesus and he has forgiven my sins. Today is a new day and the past is behind.

Oh my! Today's thing to let go is "Guilt."  Of all the things ingrained in our DNA, guilt is the most prevalent.  I don't know one woman, especially if they are Latin, Hispanic, Catholic, mother, daughter and friend who doesn't suffer an extreme case of "Guilty-litis."  I wonder when do we start learning how to feel guilty about everything.  I don't hear men frequently "apologizing" for everything.  It has to be something major in order for them to start feeling "guilty." (At least the "guilt" we females feel all the time.)  However, we...women, we even apologized for taking a deep breath.  Sometimes our guilt is so deep within ourselves, it is more our second nature or our way to operate.  Every decision we make have some type of "guilt" related influence.  I think this is one of the reasons that it is so hard to be consistent with seeking change for the better, or just allowing us to be happy, just because.  It means automatically the "guilt-alarm" goes off! Who knew that "guilt" could be such a cheater of joy.  I'm all for being considerate about my fellow humans, and animals, too, but why do we let guilt overshadow all we do and how we act?  I'm ready to let go of guilt.  But I don't want to become selfish, nor self-absorbed.  I need to learn to be free of guilt as a woman, wife, mother (most of all, being a mother!) and an employee. 

Because I'm still kind of new to the marriage and motherhood clubs, I've found out how guilt is such a powerful tool used to keep us down.  I totally understand power struggles and how people being on top, needs to keep the rest down in order to keep their power going.  What is still surprising for me is for example, if we know how hard it is, why we insist of shaming our fellow mothers, wife, colleagues, etc.?  Why we are so arrogant to think that our way is the right way?  I wish I have some answers, because it is one of those topics without an answer.  The only words coming to my mind are "tolerance, acceptance, common sense, compassion." But even those words can have different meaning to each one of us. 

Yesterday, I gain a pound, and of course, I was filled with "guilt," but it wasn't only for the "guilt" of having gone up the scale, but because to what it meant on the things I did, or didn't do, to move forward to my goal.  Which makes me come back to the drawing table, what it is exactly my goal? Do I really want to get healthy?, do I want to accelerate Karma? or what it is "there" that I so anxiously want but to afraid to verbalize because I will feel "guilty" if God and the Universe grant me my wish?  Who knows? At this point, I don't even know. 

Every morning, I need to remind myself that I'm being the best person I can be with what I have.  That I'm the best mom, best friend and best wife I can be with the tools I have available.  It takes all that I am to not feel guilty about my lacking, especially with LJ.  But again, I don't solve anything  feeling "guilty."  And the least I want to do is to make LJ feel guilty for being who he is, which is in every way perfect. 

Finding the right balance of having a social conscience is a challenge in itself without dressing it up with "guilt."  I need to understand they are not "synonyms." I will work to let go of the "guilt" but will also work hard to be conscious about the World and contributing to make it better.  For everyone, without guilt, but with lots of love.  And I pray my sons learn this lesson, not out of "guilt," but because it is the right thing to do. Full of Love, Faith, Empathy, Compassion and Peace, but most of all,  Free of guilt. 

Lent edition: Days 3-8

And I'm back to what I always do...I have a huge issue with consistency.  I couldn't sit down to write down since my last entry (day #2.)   I was reading the "list" and thought "Wow, we have to deal with all these in a daily basis, even worst, in a minute to minute, second to second basis." 

1. Feelings of Unworthiness – You are fearfully and wonderfully made by your creator. (see Psalm 139:14)
2. Impatience – God’s timing is the perfect timing.
3. Retirement – As long as you are still breathing, you are here for a reason. You have a purpose to influence others for Christ. Our work is not always tied to a paycheck.
4. People Pleasing – I can’t please everyone anyways. There is only one I need to strive to please.
5. Comparison – I have my own unique contribution to make and there is no one else like me.
6. Blame – I am not going to pass the buck. I will take responsibility for my actions.

Not only did I take "time away" from blogging, I also took some time away from tracking "my daily points."  I haven't gone wild with eating, etc. but I haven't either diligently watch my food intake. 

I have the blessing of working with people from all around the World.  One thing that always strikes my curiosity is to see how in the US, even though they considered themselves to have a "Global Mindset" they are extremely US Centric.  (And don't let me start with the "Texas" mentality...) I know the "Immigrant" issue is a big deal and one, which I'm super embarrassed to admit, don't know a lot about.  Even though I'm from Puerto Rico, an US Commonwealth, many Americans consider us as "Outsiders," "International," "Part of Mexico," etc. etc.  Especially those who haven't have the privilege, or simply doesn't want nor see the need to travel or learn about the World and its diversity.  Being an "outsider" or an "alien" comes with "feelings of unworthiness," "impatient," "retirement," "people pleasing," "comparison," or "blame:" and all of these "comes with the territory.

I know Immigrants, similar to some women, and anyone not following the "norm" have to work 5x harder (with less pay) just to prove how "worthy" they are.  We become "people pleasers," "impatient," because we really want to see "Karma" happen to those who mistreat us; plus, we want to see the "reward" for our hard work.  Being somehow different, in the way we look, the way we talk, our accents, we are always being compared to everything and anything.  Better yet, sometimes those comparisons are simply based on wrongly created perceptions.  There is no exception on where you go through this cycle.  It can be applied when going on a diet, in your workplace, even when dealing with anything that goes against the masses, status quo or the majority perception on how things need to be.

It is so reassuring to know (at least in my case) about God's perfect timing and will.  Also, to know we have a purpose beyond ourselves, and in due time, we will understand why we go through the things we do.  For years, I've compared myself to others.  (I recently discovered the term currently used to describe the "me's" of back then.  The term is "DUFF"- which by the way... I cannot wait to see the movie.) Only to discovered what a waste of my time and energy it was.  In  my work, I don't have one single female leader I can relate to.  They are amazing though, I just cannot relate to them.  Simple as that.  

What a great reminder is to let go of all those things.  We just have to be aware, be in the moment, and keep reminding us we are what we are.  "It is what it is" and we always have a new day to start again.  I will go back to my "points," know my worthiness, purpose and value, working hard to become the best me I can be, even though people will noticed it or not.  And when in doubt...will follow these 3 simple steps..."lather, rinse and repeat"  :)

Lent edition: Day 2 "Your Comfort Zone"

This is my day #2 of my "40 days-Lent-blog-a-thon, and per the list from "40 Things to Give up for Lent" ( http://gs4nj.org/40-things-the-give-up-for-lent-the-list/ ) today I chose:

"Your Comfort Zone – It’s outside our comfort zones where new discoveries are made."

Personally, I'm very apprehensive of "comfort zones."  I still don't know if people understand comfort zones are an "illusion."  On my desk, there is a "fortune cookie message reading: "In life, it's good not to get too comfortable."   And that is totally true.   In my relationship with food, I've found out when I'm in my "comfort zone," I simply stop trying to make better choices.  I take for granted the moment I'm living in, thinking it is going to last forever.  And I do it with both, the happy moments and the not-so-happy moments.  For the first time in my life, I'm revisiting what I've considered as my "comfort zones" and ironically, one of my discoveries I identified as a comfort zone is about being overweight.  Because I spent 3/4 of my life being on "the chubby" side, this is where I feel "comfortable" navigating on... Which is not only ironic, but an oxymoron as well, because why do I always "go back" to the hardest, most challenging (not the good challenges, the other kind..) and "think" I'm "comfortable" when everything is "uncomfortable" (i.e. clothes don't fit, no energy, always tired, feeling sick, worthless, etc.?) 

Yesterday, I had my weekly WW meeting, and I lost -2lbs.  Which is great! However, my "comfort zone" got shaken up again because you know what that meant??? My daily points allowance got down, too.  Which means... less food (well, at least the kind of food I like because fruits and veggies are "0" points.)  It is good and I know it was going to happen from time to time, but not when I had my days already "figured it out" and I was "comfortable" with the program. Another "comfort zone" I need to work on is being so "non-confrontational."   Especially when people around you makes hurtful comments about things you care about.  Special Needs children and adults are my people.  Don't mess with them if you don't understand what they and their families are going through.  I wish I could be more quick to react when offensive things are being said and have the sharpness and wittiness to have the perfect response right then and there.  If we're talking about "wish list" on how to have a great response, not only to educate the ignorant, but also to raise awareness without bringing out all the rage contained within me.   Someone near me said to another person when sharing a story about a Special Needs teacher being bitten by a little girl. "They need to put a harness on them:" The tone and the way it was said put my stomach in knots.  Yes, it sucks, yes, they can get aggressive from time to time.  Some of these kids cannot express themselves, nor deal with frustration and all the things physically and mentally affecting them.  I Thank God for all those Special Needs Teachers having the gift and ministry to work with them.  But I didn't say anything.  I've tried, but "English" betrayed me.  I couldn't put my English words together to express what I wanted to.  And I kept my mouth shut, in my "comfort zone" of not wanting to "ruffle any feathers."

To those afraid of losing "your comfort zone"  I'm sorry to be the bearer of bad news...but there is only so much you can do, and honey, doesn't matter how hard you try, when it is time for "life" to take over and shake you up a little bit, doesn't matter how much you cry, scream, deny, insult, etc. etc.  your circumstances are going to change; like it, want it or not.  Because we have "freewill," if you decide to go back to a previous "comfort zone," same thing...it means to just go in circles for nothing, as we said in the beginning, it's an illusion. 

Let go of your comfort zone, do not fear change. "It is what it is," embrace it and make it work.  I will work around with my "less points per day" food intake, and how to be assertive and confrontational when needed to be.  I just pray I'll do it in a way that builds and not destroy.  Because, if someone have discovered better than anyone that a "comfort zone" is an illusion, it is the Special Needs community.

The "Gorditos" files: Lent edition

I just realized that I haven't post anything since November 3, 2014.  It has been a roller coaster of "emotional eating" starting with Thanksgiving, following it up with Christmas, New Years', Valentine's Day(which I'm not a fan, of Valentine's day that is,)"Fat Tuesday" and Girls Scout cookies season. But yesterday, was a special day.  Especially for Catholics, we started the Lent season, I saw all over Social Media all the things that people are "giving up."  Which made me think, "how not eating carbs during Lent will be a sacrifice and how it is going to help the person become more spiritual?"  Yes, first sin of the Lent season, I'm judging.  However, going on my own mental list of things to "give up" for Lent"  I "miraculously" found in a post the following "40 things to give up for Lent" which I truly think it was Godsend. (Check it out!: http://gs4nj.org/40-things-the-give-up-for-lent-the-list/)  So my Lent "sacrifice" will be to practice each of the "40 things" listed here apply to the reality of my life and write a blog entry each day for 40 days on each one.

#1 "Fear of Failure – You don’t succeed without experiencing failure. Just make sure you fail forward."
I think one reason I've stopped blogging for a while was because I felt like a total failure.  I don't know if it is the mix of being "Puerto Rican, Catholic, and hormonal" but I felt as a failure in all aspects of my life.  I went into "fear" and "victim" mode because all "my" attempts to move forward where quickly shot down and sabotage (by myself, of course.)  Yesterday, "coincidentally" I attended the Bible Study my dear neighbor is conducting every Wednesday. And surprise, surprise! The Bible passage being studied (also read at "Ash Wednesday Mass") was Matthew 7.  This verse especially spoke to me : Matthew 7:8"For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened."  And I decided to face my fear of failure with humor and doing exactly what I'm the most fearful of: Writing it down.  I'm not giving up anything for Lent.  Yes, I'm following the rule regarding "fasting" on Ash Wednesday and "No Meat" on Lent Fridays'.  But what I'm doing this Lent is really taking a good inside look of what I can control, and what I need to "give it to God."  Also, I decided instead of labeling all my attempts to eat healthier and lose weight as "failures," I'm going to focus instead of what worked and what didn't work.   For example, from mid July 2014 up to end ofJanuary 2015 I've tried: Advocare, JuicePlus, 21 day fix challenge, Clean Eating and Weight Watchers.  Impressive, huh?  It got a little overwhelming (and expensive.)  From Advocare, the product that I truly liked and I really don't know what is in it, but I can tell you, if you can get it, GET IT, is the beverage called "Sparks."  Sparks is like "grown up Adderall"  I tried it in theFruit Punch and Watermelon flavors, and they taste like very yummy "Kool-Aid." It have vitamins and amino-acids, but what I did noticed when I took it was that it gave me a surge of energy and I could easily concentrate and focus on the tasks I was doing.  It is "like coffee on crack" (however, I've never have tried "crack" before nor have the intention to try it, ever.) Juice Plus, I recommend it to anyone.  What I liked was even though I'm not a "vegetable/fruit" lover/"free will eater," I knew I was getting the nutrients I needed it without having to "eat" 11 portions of fruit and veggies a day.  The only reason I've stopped using it was because I couldn't afford it. (It is not crazy-expensive, but for our budget, everything is "crazy expensive" anyway.)  21 day Fix, was also great.  However, all the "planning" involved got overwhelming for me.  In this case, it was an "user error/failure" rather than a "program failure/error."  The exercise part of it is simply, I don't want to use the word "torture..." but for someone overweight and out of shape people like me, it felt like not torture...but "unpleasant punishment."  Clean Eating...this one is a subjective one, because we still trying to do as much "clean eating" as we can manage and afford, which put "Weight Watchers" in our path.  I prefer to call it now "reality eating" rather than "clean eating."  WW's point system allows you to "reality eating" while trying to incorporate your day to day.  At least "my day to day." (Not the Kardashians' day to day...)  What I discovered from all these last months' "diet failures" was that 1) I need support, I cannot do it by myself.  For that reason, I love attending to the WW weekly meetings and looking around the room seeing  different people, different ages, different sizes and ethnicity, however, I see myself reflected in each one of them.   2) It needs to be "human" and "true" to my reality.  3) The common denominator these programs had was "ME."  I need to make it work, at the end of the day, it is not the "program" is the person going at it.
Luiso looks at me in disbelief because I have 2 new favorite shows (both on TLC)  1) "My Big Fat Fabulous Life" and 2) "My 600+lbs life." The first one gives me hope and encourages me to keep living life no matter what size you're in.  The second show reminds me nobody is exempt of going through life carrying such a heavy load of  "weight."  Some of the "weight" can be just skin or fat, or for some of us, it is all the guilt, traumas, failures and fears we carry with us all the time, and at one time, just gave up.  

In summary:  First thing to give up for Lent "Fear of Failure" - Try Advocare Sparks drink (Fruit Punch is delicious!,) , if you need help losing weight, try getting in a support group or support network, if you don't eat enough fruits and vegetables, and have the funds, try Juice Plus, use your common sense when eating, but most of all, know who you are, forgive yourself from time to time when you feel defeated and fearful, and most of us, Trust God.  Use this Lent time to really look inside of you, and the best part of it, you can do all of these, one day at a time.  (for at least 40 days. :)

See you tomorrow with entry #2 of the "Gorditos" file "Lent Edition."