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.