The number one question I get...

Most of the time we don't get very many questions.  Some people either just stare or assume something is 'different' when they see Emilio.  I don't necessarily blame them.  I mean, I'm always keeping an eye out for kids that are like him when we're out.  My husband and I have sort of developed an ASD (autism spectrum disorder) radar since being diagnosed.  With the numbers growing so rapidly we're finding kids like him almost every time we're out.  Either a kid that laughs out of sync at the movies, to a kid that walks on his toes at the park, not to mention the visits at our doctor's office. 

There's many little things Emilio does that separates him from the bunch when we're out and about.  He 'runs' funny, which really isn't a run but more of a super fast paced walk on his toes.  You know that quote made famous by Ali?  "Float like a butterfly, sting like a bee?"  That's Emilio.  When he runs it's like a butterfly, his little hands flap and his legs are like watching someone run on stilts.  Very stiff knees.  And the sting like a bee part, well that's because he has a bad habit of hitting people.  That's another thing that makes him stand out.  He hates to see people cry.  His reaction is either to cry himself, or hit them.  It's one or the other and you never know which one it's going to be.  We're working on helping him be more compassionate.  It's one of the many things we're working on.  Bending his knees when he runs is another.  Everything that should come naturally to a person has to be learned through some kind of therapy for Emilio.  And you'd think he'd complain!  But he never does! 

He never complains because Emilio is what they call "non verbal".  One of the many side effects to being autistic.  Emilio has a vocabulary of about 8 words.  And each of those words took a LOT of work for him to learn.  He can say Mama, Papa, Nana, Tata, wow, agua, ball, ice, and he is currently working on "casa" and "leche".  He used to be able to say my sister's nickname, Tita, for a WHOLE DAY!  But since his seizure in April of last year he hasn't been able to say it.  You can tell he struggles so much with vocabulary.  Not just the mechanics of it, but also associating what's what. 

There's many books at the public library, along with DVDs that teach sign language and I've rented them ALL.  For Emilio it's much easier to learn to sign than it is to learn to speak and it has given him a voice!  He has learned about 15 or more words in sign.  He knows the basic colors, foods, and signs that go with songs like "The Itsy Bitsy Spider" and "If You're Happy and You Know it".  It has been a total game changer for our whole family.  All of us are so much less stressed because half of the time we no longer have to play the guessing game trying to figure out why he's having a meltdown.  He's able to tell us if he wants more chocolate milk or if he wants you to show him the pictures in a book, or if he wants to play.  All through the magic of SIGN!  I say half the time we don't have to play the guessing game, but the other half we still do.  And if you don't guess within like 12 seconds, Emilio will turn into The Hulk.  Really.  He gets angry fast and that's a side you don't want to see!

I guess I would get angry too if I couldn't tell people when I was hurt, if I'm hungry, if I'm sleepy, if something is bothering me.  It must suck to not be able to say LISTEN!  Leave me alone!  I'm tired!  My stomach hurts!  Or whatever was on my mind. 

Which brings me to my final point.  The number one question people ask is "do you ever think he's going to talk?"  I get that one ALL the time.  The truth is I DON'T know if he's ever going talk.  Initially, that's all I could think about when we first received the diagnosis.  Will he ever talk?  Will he ever learn how to ride a bike?  Will he ever read and write?  Do math?  Have a girlfriend?  Get married?  Live on his own?  What will happen to Emilio if something were to happen to ME?! 

All these questions have the potential to spiral you into a dark abyss if you give them too much time.  What IF's can ruin any kind of peace you're trying to achieve.  They rob your sleep, they make you dizzy during your waking moments, it's not a happy place.  SO, I just don't think about that anymore.  I've learned to LIVE IN THE NOW.  Like, RIGHT NOW this minute, this second.  I take joy in whatever he achieves TODAY.  Things like helping me to load the dryer, put socks in the laundry basket, stack 4 blocks on top of each other, turn on a light switch, place a sticker on his own hand, pee in the toilet, wash his own hands, allow me to brush his teeth.  I celebrate these things DAILY.  That action, living in THIS moment, has brought me so much more calm and peace than any other single action in my life.  At first I thought, easier said than done...and it is!  It IS easier said than done.  But nothing worth having comes easy. 

So enjoy it while it lasts.

Ripping the bandaid off, aka the most difficult thing to talk about.

Ok.  Taking a few deep breaths as I think about all the people who will read this either immediately or in the near future and trying to gain the courage to say it out loud (type, say...same difference).  Here goes...

So in the last blog I mentioned that soon after Emilio had his first seizure he was enrolled in the Early Start program where I had to load him on to this huge bus and send him off to our neighborhood elementary school twice a week for special ed.  At that time the only diagnosis he had received was for epilepsy.

Soon I would discover, through his school and from home evaluations that the Regional Center did once every few months, that he also had "global developmental delays".  A developmental delay is any significant lag in a child's physical, cognitive, behavioral, emotional, or social development, in comparison with norms. That means that he was delayed in every aspect of his development, speech both expressive and receptive, gross and fine motor skills were painfully slow to develop, at this point he still wasn't crawling but by the time he was 12 months old he had finally figured out how to sit unassisted. And he still hadn't spoken a word.  Not even a "kind of" word that sounded like a word.  No baby babbling, no pointing, he never responded to his name, I'm not even sure he KNEW his name.  Not mama or papa or anything.  I was somewhat concerned that he was deaf, but those tests came back normal.  At 20 months of age, after Emilio had been enrolled in the program for almost a year, his coordinators called me in for a meeting at the school.  What I thought was going to be a progress meeting to tell me how he was doing and what to expect next.  But really, nothing could have prepared me for what I was about to hear. 

When you're sending your baby off to a new school before they're even able to talk, as a mother you make sure you know every one's stats, phone number, extension, natural hair color, weight, height, etc etc...So needless to say, we were on a first name basis.  The two women and I sat down on these mini plastic blue chairs, the kind you would expect a preschool to have, and they started by saying what a pleasure Emilio is to work with and how engaged he is with the music and how cute he is.  I nodded and said thank you.  Yes, he is cute and he loves music, LOVES music!  All he has to do is listen to one song one time and he'll hum it for you for days after. 

Then they looked at me and said that they wanted Emilio to be taken in to the Regional Center headquarters and meet with their psychologist to be evaluated for autism and/or mental retardation.  My throat closed up.  I began to feel my palms sweat.  Did I hear them right?  Had I known this was going to be THAT KIND of meeting I would have asked my husband to come along with me.  Maybe he could keep the room from spinning right about then.  My eyes welled up with a flood of tears.  I told them that I had suspected he'd be autistic for a while.  Ever since he began to miss all the milestones my other boys had met right around his age.  But m-m-m-m...I couldn't even say the word.  Such a BIG word with so many definitions, none of which described Emilio. That word, to this day, scratches at my vocal cords like a jagged knife.  Its the single, most hardest thing I've ever had to face.  To say that my son is "mentally retarded".  How?  How did this happen?!  How did this FUCKEN HAPPEN?!

Valentines Day, 2011

My husband and I took Emilio to his appointment at the Regional Center to meet with the psychologist.  We were there for four hours.  Puzzle after puzzle, pretend play, pushing ducks with sticks, pegs and holes, colored bears and baby toys.  Test after test.  The psychologist and the service coordinator walked out the door after an extensive battery of tests and came back about 20 minutes later.  We were very nervous.  Afraid of the results of his performance.  We were in the same room the entire time, we saw how he didn't know how to put the puzzle piece in it's corresponding cut out.  He couldn't push the stupid duck off the table with a stick, but so what?  Since when did that measure anything?  But I think I was just in shock really. 

The psychologist said Emilio scored in the mild mental retardation category.  There it was again. That fucken word.  Quit saying that!  He's not fucken retarded. Retarded is someone with Downs Syndrome.  Retarded people look different, you could tell there's something 'different' when you see someone retarded.  Emilio looked like everyone else!  He's cute, he's funny, he's loving and happy!  Wow.  That's the day I woke up.  Everything I thought I knew was 'different' from that point forward.

'Retarded' took on a new meaning for me soon after.  At first, still trying to cope, I tried to think about it as just a learning disability.  To put in in perspective 15% of Americans have a learning disability.  Being able to say Emilio has a learning disability was waaaaaay easier to say than 'the word'.  It's more socially acceptable, people don't ask too many questions, etc.  But unfortunately those two terms aren't interchangeable.  They mean two different things.  A learning disability means basically that one might struggle academically.  Skills of listening, speaking, reading, writing, and/or mathematics may be negatively affected.  As opposed to someone with MR.  Mental retardation is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. Emilio has and will continue to learn new things, he's just doing so at a much slower pace than his peers do. 

First day of school!

Breaking the news to my family and friends was really difficult.  The first person I told was my sister.  We spent most of the time crying on the phone.  She lives in the same town as I do, but I just couldn't face anyone just yet.  It was too hard.  I didn't want anyone to take pity on us.  I didn't want Emilio to be treated differently.  To be handicapped by his diagnosis.  I needed to sort this all out so that he could have as normal a childhood as possible. 

I went to therapy for a few months, the main thing I wanted to be able to work on was acceptance.  I wanted to be able to say 'the word' without my voice breaking and my eyes filling up with tears.  I knew that if I was able to say it, I'd be that much closer to accepting it.  14 months later here I am writing this blog.  I've got to be honest and say that yes, it still hurts me to say the word.  It still stings my throat.  I cringe when people use it to put down others, to use it as a synonym to 'stupid' or 'dumb'.  It's no different than calling someone a 'faggot' or calling a Mexican a 'spic' or 'wetback'.  It's RUDE, it's IGNORANT, it's HATEFUL, it's WRONG.

Emilio is NOT stupid.  Emilio is NOT dumb.  He's loving, he's bright, he's caring, he's HILARIOUS!  He doesn't judge, he's not superficial, he's the epitome of unconditional LOVE.  He's a son, a brother, a grandson, a nephew. 

He is by far the MOST STRONGEST person I know.

He has the heart of a lion.

He's opened my eyes to a whole new world of crazy.  And it's been a hell of a ride!  I can say with all certainty that the diagnosis does not define Emilio.  It just explains some of his quirks. 

So that was it.  That was my bandaid.

Where's Your Shoe?!

So, you might be wondering why the name of this blog is "Where's Your Shoe?!"  I'll get to that on the next blog. Today...we'll start at the beginning.


I'm a 31 year old mother of 3 beautiful bouncy boys and this is the story of my youngest, Emilio.
Emilio is the sweetest, cutest little 3 year old ever!  My 3rd son, which was supposed to be my girl but I guess "God had other plans" :)
I was absolutely certain he was going to be a girl. My cravings were different, all I wanted was sweets, sweets, sweets!  I remember drinking the honey right out of the plastic bear and having Pop Tarts for breakfast.  This was not typical for me or any of my pregnancies.  So I knew that this time, this pregnancy was definitely different.  A girl, for sure! 

Five months into my pregnancy we went in to get a routine ultrasound, but this one was special.  This one they'd be able to tell the sex of the baby!!!  I was so excited and full of pee (not a good combination).  Minutes after they began I could see two glowing little lumps on the screen.  I looked at my husband, then back at the monitor and asked "those are balls aren't they?"  She replied with a simple "yes, they are". There I had it.  The surprise of a lifetime. My motherly instincts had failed me for the first time, ever.  It was a boy, and boy did that sting.  But only for about 3 days.  I guess I had just let myself get all worked up and excited over picking tutus and patent leather shoes.  But the reality of it is, I love boys.  Boys are absolutely amazing.  I love Lego's and dirt and frogs and Marvel comics and I am soooo glad that I don't have to pretend to be anything princess-y.

Anyways, back to Emilio.  Two days after he was born, we still didn't have a name.  So we decided on Emilio. His great-grandfather's name and his dad's middle name, and it's a decision I'd regret since!

No one could pronounce Emilio! I should have named him Adam or Abraham. Easy to pronounce in English and Spanish, something that's very important to our Mexican-American culture. But a day late and a dollar short I suppose.

Having Emilio home felt so...right.  He was the perfect addition to our family.  The boys bonded with him right away.  There was no jealousy from either of his two older brothers.  I guess they were so used to the idea of a new baby that by the time the stork dropped him off they were just excited to meet him.

Benny and Diego are truly the best big brothers on the planet. They do anything and everything for their little brother, no matter how mean he could be sometimes :)

Emilio was a quiet baby.  He hardly ever cried and when he did, you could barely hear him.  It was almost as if he was too lazy to really cry.  I didn't mind it at all.  Benny, the middle one, had suffered from colic as an infant and I would spend hours on end trying to soothe and comfort him to no avail.  Switching formulas, bouncing him, rocking him, rubbing his tummy, giving him teas and rice water, tablets and drops. Nothing helped!  Until one day he just finally grew out of it.  It was actually a relief to have such a quiet baby.  I thought I had paid my dues and was finally being blessed with an "easy baby".  But around five months I began to notice that Emilio was more than just a quiet baby.  He really struggled to sit on his own.  His back didn't have much strength, even if you held him by his hips he would flop to either side if he weren't completely being held and supported.  At five months is when he had learned to roll over, which is kind of late when compared to my other two sons.  At his six month baby check up I brought my concerns to his pediatrician.  He told me that I was just comparing him to my other sons, that all kids develop differently, and that I should just relax a little.  So I did.

Here he is at eight months, the following doctor's appointment.  As you could see he's leaning a little because he still can't support his own weight to sit by himself. 

The fact that he still couldn't sit unassisted at eight months was a huge concern for me. At this check up he still wasn't able to crawl, nor was he even attempting to grab on to furniture to pull himself up, nor was he pointing at anything, he was still very quiet, except at night...he never sleeps through the night, and he didn't respond to his name...the list goes on. He was missing milestone after milestone.  But he made good eye contact and even smiled at people.  I guess that was enough to keep the doctor's happy because they didn't seem concerned at all.   I was just another mother quick to worry. 

A week after his first birthday Emilio caught the flu.  One of the many benefits of having two older sticky, smelly brothers.  But as they got better with a little IBU and a warm bath, Emilio got worse.  I laid him down after giving him a bath and instantly his condition worsened.  His eyes rolled and bounced to the back of his head, his limbs became limp and cold, and his lips turned blue.  Having never seen this before I yelled to my husband, he rushed over and tried to rub his sternum to get a reaction.  But there was none.  His body was completely limp, like a doll. We rushed towards the Children's Hospital and carried him into the ER.  They took him from my arms and put a tube down his tiny throat.  Loaded him full of anti convulsants

This picture was taken shortly before his first seizure.  Adorable, isn't he?

We went his entire first year believing he had "febrile seizures" which is defined as:

Febrile seizures are convulsions brought on by a fever in infants or small children. During a febrile seizure, a child often loses consciousness and shakes, moving limbs on both sides of the body. Less commonly, the child becomes rigid or has twitches in only a portion of the body, such as an arm or a leg, or on the right or the left side only. Most febrile seizures last a minute or two, although some can be as brief as a few seconds while others last for more than 15 minutes.
The majority of children with febrile seizures have rectal temperatures greater than 102 degrees Fahrenheit. Most febrile seizures occur during the first day of a child's fever. Children prone to febrile seizures are not considered to have epilepsy, since epilepsy is characterized by recurrent seizures that are not triggered by fever.

One of the many things I've learned on this journey is that we are all capable of having a seizure.  Everyones threshold is different.  Things such as high fevers, an injury to the head, extreme stress, lack of sleep, alcohol and drug abuse, as well as family history can all contribute to having a seizure or seizures.  Turns out Emilio's threshold is very low.  The seizure in June of '09 was just the first of many.  He's had 3 severe seizures, the longest lasting 50 minutes, non stop.  He's had countless little ones, usually lasting between 10 seconds up to a minute each.
We discovered after his 2nd severe seizure in April of 2011 that it was no longer febrile seizures.  The neurologist said Emilio was epileptic. He would need to be on an anti epileptic medication until further notice.  I was very, very sad. VERY sad.  But after seeing him have two really horrible, scary seizures I didn't so much care that he was being placed on meds...as long as he didn't get any more of those debilitating seizures I was willing to try anything.  So we started him on twice daily Keppra.
His eyes were a little crazy when he first began the medication.  It seemed to get him a little dizzy at first.  He would bump into things and had trouble focusing.  But after the first two weeks the side effects went away.

I was asked to follow up with my pediatrician a few days after being seen in the ER the first time in '09.  The pediatrician which shall remain nameless unless you look up my review on Yelp! (insert angry emoticon here)...I had learned to distrust the guy by then. Follow up? For what?  Just so I could get swept under the rug like all the other times?!  A seizure is what it took to finally be heard.

Upon reading Emilio's chart and recent ER visit, he referred us to the San Diego Regional Center. 
And soon after that, I'd have to be loading up my tiny, fragile, voiceless little baby onto a big yellow bus for a special ed class twice per week which included music, art, playtime...they called it the "Early Start Program".  An early intervention program is what it is.

And even though I've met a biiiig group of kids, all with different types of disabilities, all beautiful in their own way, I've never met anyone else like Emilio.  He is as unique as an 1943 Lincoln Penny formed in bronze.  Looks just like all the other ones, but to me he's worth millions.