In The Beginning… {Asperger’s Syndrome}

Sigh…This story is going to start like so many you’ve already heard.  “He was a normal little boy.”  Well, what else can I say but the truth?  He WAS “normal”.  Moose met all his milestones on time if not early.  He slept through the night at 4 weeks, walked at 10 months, said his first word at a normal age and he ate everything in site.  The only thing he did late was get his first tooth.  He was 11 months old before he cut his first one.  Not sure if that means anything but I remember it concerned me.

So what happened?  I have no clue.  I just remember that at some point he got weird.  He stopped communicating.  He used to speak English, some Spanish and understood Italian.  But at the age of about 2 1/2 he all but stopped speaking.  He spoke very little and constantly repeated things he heard on tv.  There was no such thing as having a conversation with him.

I told myself he was just a little behind and convinced myself that it was because we were confusing him.  I spoke English at home, my parents spoke to him in Spanish and his father’s family (we were divorcing) spoke only Italian to him.  So OF COURSE he was confused.  Understand also that I was only 22 or so at the time and believed whatever anyone told me and this is what my family told me.  I also wanted to believe it.  But deep down I knew something wasn’t right.  There were other signs.  I just didn’t know what they were signs of.

Moose never played with toys the way they were intended to be played with.  He didn’t race cars up and down his raceway carpet.  Instead he lined them up.  If I mixed them up when he wasn’t looking, he’d run right back and put them back in the same order.  I never understood how he remembered what order they were in.  I’m not talking 3 or 4 cars…I’m talking like 20.  He also became obsessed with telephones and fans.  I still can’t tell you why to this day and neither can he.  He finds it pretty funny and bizarre now.  But it was incredibly frustrating back then.  Everyone’s house we visited, he’d instantly become attached to their phone and in many cases break the phone.  Didn’t make for a pleasant visit.  If we went somewhere and he found a ceiling fan or and standing fan we’d have to stand there and let him stare at it until he was satisfied or he’d have a meltdown.  Maybe it soothed him.  I don’t know.  I do remember one day reprimanding him for something and KNOWING that he just did not understand me.  I could tell that he had no idea what I was saying.  And I started to cry and said to my husband “What if he’s autistic?” and he just said that I was crazy.  A mother knows.  We don’t want to believe it, we want to bury it, but we know.

The food situation just got worse and worse.  That’s something we still struggle with but it’s much better.  He went from eating anything and everything to basically living on pizza crust, bread and white rice!!!  It was awful!  He was so thin and he just looked unhealthy!  We just couldn’t get him to try anything.  It made him gag.  We couldn’t eat anywhere unless they had pizza, bread or white rice and he was very picky about the kind of white rice he ate.  It really was a nightmare.  Even medicines were a nightmare because we couldn’t get him to swallow them.  There were countless other things.  Like he hated haircuts.  He cried when I took him for a cut.  Getting him out of the bathtub was a battle.  He didn’t like strangers picking him up.  I warned my old boss not to pick him up once and he didn’t listen and Moose slapped him.  I rather enjoyed that actually.   When I ironed his shirts I had to let them completely cool off before putting them on him or he’d say I was burning him.  He never slept in his room with the lights off.  I mean, the lights had to be completely on!  No nightlights.

But I just kept telling myself that these were little phases he was going through and the terrible 3’s.  So we enrolled him in preschool.  I was TERRIFIED.  I was scared that now it was inevitable that his teacher would notice there was something “off” and would bring it to my attention.  But I HOPED that being in a school setting with structure he would mature and snap out of it.  Yeah.  Wishful thinking.  One can hope, right?

Then the letters started coming home.  I still have them.  Those heartbreaking letters from his preschool teacher.  The letters that started it all.  But the letters that ultimately lead to his early intervention.  Understand that 11 years ago, age 4 was considered early intervention.  Nowadays it’s considered at age 2.  But I was so ahead of the game back then because Asperger’s was still considered a very new diagnosis.

Back to the letters… “Dear Mrs. M. ” … Oh that reminds me, I had JUST remarried at this point.  Literally 5 months before he was diagnosed.  Like your first year of marriage isn’t hard enough, right?  Not to mention that my husband and I were barely 24 when he was diagnosed.

“Dear Mrs. M., Your son has been having some trouble during circle time.  While all the other kids are sitting down participating, he’s running around in circles making animal noises.”  Hmmm…well, at least he gets the concept of a circle.  Maybe that’s what circle time means to him?  I know I’m reaching.

“Dear Mrs. M., We’re having an issue with your son and personal space.  He seems to get right up in the kids’ faces when speaking to them and they don’t like it.  Sometimes he growls at them and it frightens them.”  Umm…ok.  Well, at least he speaks to the other kids..sometimes.

This one was in a sealed envelope.

“Dear Mrs. M., You may want to to sit down and have a cup of tea before you open this one.”  Oh shit.  “Today I was busy tending to another student and when your son couldn’t find the appropriate way to get my attention, he grabbed me by the back of my hair.  I had to grab him by the arm to get him off of me and as I did so, another parent was looking in the window.  To the parent it appeared as if I was being abusive while all I was trying to do was get him off my hair.  It caused quite a situation in school today.  We need you to come in for a meeting.”  Oh dear God.

I have a stack of these letters.  These are just a few of my favorites.  So off to meet with the teacher I went.  My worst fear was that they’d tell me there was something really wrong with my son.  I thought MAYBE they’d say he had a behavioral problem and, honestly, at this point I was HOPING for that.

To my surprise the principal joined her.  And my worst fear was realized when they suggested that I have him evaluated.  They said they thought he may have some type of PDD.  They only said “a learning disability of some sort, or maybe it’s nothing” but it was my worst fear.  They recommended a hospital to have him evaluated and off I went not really knowing what to think.

The day of his evaluation was the day before his 4th birthday.  He was having a good day.  He didn’t speak at all during the evaluation but he did what was asked of him when the doctor told him he could play with the toy horses if he did such and such.  Horses were his favorite.  So here I am thinking he’s doing amazing.  They’re going to tell me there’s nothing wrong with him.  Maybe just some speech delay.  They wrap up and the doctor says to me “I think your son has mild Asperger’s Syndrome or high functioning Autism.  I went cold.  I had no idea what Asperger’s was and all I heard was Autism…and all I saw was Rain Man.  I thought I would die right then I there.  I thought he had made a mistake.  I didn’t understand.  I thought he had done so well.  It was actually one of his BETTER days!!  So I leaned forward, all 24 years of me, toward this 75+ year old man who had obviously been doing this forever and I said “What if you’re wrong?  What if you don’t know what you’re talking about?” choking back tears.  And he just said, “I encourage you to get a second opinion.”  You bet your ass I’m getting a second opinion!!  But I was crushed because I knew he was right.  It was the worst day of my life realized.  I just wanted to hear that my son was dyslexic or had a learning disability or ANYTHING that could be cured.  NOT Autism!  He also said that fortunately I live in a state that has the best laws and services for Autistic children.  And that was that.  I left and didn’t know what to do next.

So I went home and cried.  I replayed my entire pregnancy in my head.  Ugh, and what an awful one it was.  Let me not bore you with all those details (actually, it’s a very good story but I don’t think it has anything to do with this), but suffice to say that Moose was not planned.  I was very young and in college.  Madly in love with his father so when I ended up pregnant there was no choice for me but to have him.  His father, on the other hand, couldn’t really think for himself.  One day he was happy and the next, after talking to his parents who were none to thrilled, he was nervous and didn’t know what he wanted.  There was much more drama than that but maybe I’ll leave that for a side story if any of you want to hear it.  But anyway, it was war of the families to say the least and I was seriously having a nervous breakdown.  I mean seriously, my nerves were shot to the point where I would shake.  Can’t be good for a baby in the first trimester.  So did that do something to the embryo?  Did I have a drink before I knew I was pregnant?  I got into a fight with my dad at one point and ran out of my house and fell down.  (I told you it was dramatic.)  Did I hurt the fetus at that point???  This had to be my fault somehow.  Somewhere along the way I had to have done something wrong and now this poor child was paying the consequences.  So I cried.  And I cried.  And I cried.

And then I realized that I wasn’t doing him any good by laying there crying so I got up off my ass and went online.  Looked up Asperger’s and was amazed.  I couldn’t believe that they were describing my very unique little boy!  I couldn’t believe that there were other kids out there with the same quirks!  OMG, there were others like him!  So then I started looking up organizations and found COSAC which is now Autism New Jersey, Inc.  And then everything started to change.

My next post will be my Board of Ed battle and how I got him into the school that changed his life.