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.

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5 thoughts on “In The Beginning… {Asperger’s Syndrome}

  1. I love that you have started this blog, we need to get more people turned on to this as I think you will help so many with Moose’s story.

    I am Moose’s aunt and it is amazing how far he has come. Had it not been for my sister’s will, determination and attitude, who knows what his life would be like. Her approach has always been there is nothing he can’t accomplish and such has been the case. Honor student, artist, published literature and if that weren’t enough, the most caring and compassionate young man you will ever meet.

    Kudos to you sister for sharing his story….

    1. Well hello. Thanks for popping in. I was really nervous about putting this out there. I’m still on the fence about what to share and what not to share. But you know…I’m just going to share everything that I think is relevant. I’m tired of all the bad advice I hear!! And the “they can’t do this or that”! What HASN’T Moose accomplished? So (to be a total cliche), if this helps one person, gives one person hope, lets one mom or dad feel a little better…then it’s worth it. I wish I had a blog to read when I was initially going through all of this.

  2. Wow, thank you for sharing your story. As I read this blog, I am reliving all the insecurities and heartbreak that I have experienced with my own five year old son who was given the same diagnosis as Moose less than a year ago. But at the same time I feel hopeful and encouraged by your son’s success, as well as my own son’s progress.

    I totally agree with you that we should not lower our expectations of our children with Aspergers or ASD, but modify our approach to teaching them new things. I know that as parents we often feel sorry for our children with Autism and our first instinct is to protect them and try to just keep them happy, avoiding tantrums at all cost. My husband & I have dealt with my son’s issues with a lot of what I call “exposure therapy”. We expose him to everything, even if its something he doesn’t want to do or is afraid of. If we don’t expose him, and lovingly encourage him to do it, then he will never do whatever it is we want him to do. Yes, we have to deal with lots of meltdowns but its part of the learning process. Transitioning was always one of my son’s biggest issues. Most professionals have advised me to stick to a schedule so that he always knows what to expect. Well, I don’t agree with sticking to a strict schedule because there are many unexpected things in life and my son has to learn how to deal with change. It is impossible for me to change the world around him so I need to help him to adjust by allowing him to sometimes get uncomfortable.

    I am very apprehensive about this upcoming school year because my son is starting mainstream Kindergarten and I honestly don’t know what to expect. But I am hopeful that he will do great. He is so brilliant and I don’t ever what to underestimate his potential.

    Please keep sharing your story and your insights…. Congratulations on your outstanding son and on your extraordinary parenting.

    1. Thank you so much for sharing your story!!! You are EXACTLY the reason why I decided to start this blog. I want this to help parents that are going through the process. When I first went through this I didn’t know where to turn and I desperately wanted to see what a teen with Asperger’s was like. Just to get a peek of what the future could potentially hold for my son. But I never met one. I only ever spoke with adults with Asperger’s and they were all diagnosed very late. And then I started hearing all this bad advise people would volunteer! I just want to give a different perspective. Something different from the “understand this child is disabled so set low expectations”. No thanks. Not for my kid.

      Keep coming back. You’ll be amazed at how far my son has come. My parents still cry when we talk about how he used to be and where he is now. I even discuss it with him and HE’S shocked at what he was like as a little kid. It may sound strange but we joke about his Asperger’s now. I know it’s not a laughing matter but we do take it in stride because we do not look at it as a disability because we never allowed it to debilitate him. You too will be amazed at the things you will discover your child is capable of. They have amazing minds. It’s interesting how the simplest things seem difficult for them but yet they can do the most complex things with no problem at all. They see things so differently than we do. It makes them very unique and experts in whatever field they choose. Of course there are struggles but you have lots of good things to look forward to. I would never change my son. I would never take the Asperger’s away if I could. It hasn’t hurt him in anyway that I can see. It hurt ME because I didn’t understand it, but it’s made him the amazing young man he is. Without it he might just be average instead of extraordinary.

  3. Hi, thanks for sharing your story, my son, who is 4yrs old, has just been diagnosed with Asperger’s. We started to notice that something wasn’t quite right when he was around 18 months old, he hurt himself, started to refuse food, (we have alot of food issues), meltdowns that would last the whole day, strict routines, didn’t like to get dirty hands, (we get through around 2 packs of wipes a week at the moment). I’ve worked with children all of my working life and to be honest had a feeling that it was something like Asperger’s but to begin with we were told by professionals that it was a phase, and 1 “specialist” even told me we were only concerned about his behaviour because I was depressed! Because of these people I felt like I was failing him in some way, he was obviously behaving the way he was because of me! So getting a diagnosis was in some ways a relief because now we have a reason for his quirks etc….. However we have moved overseas, (UK – Australia) and I’m struggling to get to grips with the healthcare system over here and hoping to sort some therapy sessions out for us soon. He’s due to start school in January and I can’t explain how relieved I am that I don’t have to explain all of his behaviour to the school, (when I informed playgroup I don’t think they took me seriously at first and I felt they saw me as an over reactive parent!), but at least now I can tell them he has Asperger’s and hopefully he will get the help he needs and deserves at school. Thanks again for telling your story you’ve inspired me to tell my own. 🙂 xx

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