4. The Diagnosis

In 2010, J began kindergarten at the public school down the street from the apartment we lived in.  I didn't really have an opinion on the school at the time.  It wasn't the best, but it was far from the worst.  He was excited and I was happy that he wanted to go to school everyday.

Halfway through the year, I began seeing notes from the teacher about J's behavior.  I received phone calls from her during the day.  I realized that my kid was being labeled as BD (behavioral disorder).  Honestly, I was floored.  One of the things I have always valued about myself was that I felt my love for my child did not blind me to the fact that kids can be complete brats.  You tell me he had a bad day at school, I totally believe it.  However, the extent of his behavioral problems seemed utterly out of place to the child I knew him to be.

J was kindhearted and he prided himself on doing things correctly and making other people happy, even at a young age.  This kid was not BD.  I wasn't buying it.

Then I found out his kindergarten teacher was on probation anyway and her contract was not going to be renewed.  So I stopped listening to the things she had to say.  I shut myself off to anything bad that happened at school, simply because I figured she didn't know how to handle a classroom of five-year-olds - which was true, she didn't, but by shutting myself off, I also was not allowing myself to realize the common theme with his behaviors.

I had high hopes for first grade, mostly because it was a brand-new teacher.  After six weeks, she called a conference and laid it all out on the table.  I've seen kids like J before ... I think there's something else going on ... What have you noticed at home?  Well.  Certainly not what I had been expecting.  Yes, he had trouble with eye contact.  Yes, he did have tantrums.  Yes, he struggled with transition and change and sitting still.  His teacher began documenting J's behavior while I began my battle with the school.

I asked the school to evaluate my son.  Test him.  Watch him.  HELP HIM.  They said they do not do that sort of thing, which let me be very clear about that right now:

That.  Is.  A.  Lie.

For whatever reason the school had, they refused to offer any help.  So we did it ourselves.  I don't want to focus on what the school did or didn't do, that's a topic for another day, but I want to reiterate that public schools have a certain degree of accountability when it comes to the students.  Do not let the school bully you into thinking that you just have a bad kid, especially if in your gut you know this isn't true.  We struggled because J gets extremely high grades; he gets high grades because he's very smart, not because he pays attention or reads directions, and it seemed his school was less likely to help him because they didn't see an obvious academic impact.

We took our son to a testing center who focuses on diagnosing a wide range of disorders and disabilities.  Their goal is to facilitate testing and then offer suggestions for doctors and therapies.  They point parents in the right direction.  We filled out paperwork.  His teacher filled out paperwork.  J went in and took tests, talked to a psychotherapist.  It was a long process, but in the end, as I was called into the doctor's office, I was surprised at the mixed emotions that I received.

Your son is on the Autism Spectrum.  

We call this Autism Spectrum Disorder, or ASD.

I had to empty my mind of everything I had ever really thought of Autism, because J was not the picture I had in my head of what Autism looked like.  Not even close.  

My husband said something funny when we finally got the diagnosis in April 2012.  

This is very lucky, having a diagnosis is lucky.

Lucky?  How is Autism lucky?

Because at least he's not an asshole.

Yes.  Because at least he's not an asshole.  We have a diagnosable disorder; his actions are the direction cause of something out of his control; we have the beginnings of getting help and answers and therapy.  He is not acting out and having what, to an outsider, would be absurd behavior because he is not getting his way, but because he has Autism.  Or he can be, but at least we know that the root of most of his behaviors is ASD and not him, well, being an asshole.  Which was such a funny thing to say, but the more I thought about it, the more I realized that yes.  Yes, it was extremely lucky.  Let me expand on that.

I was a mom in her late twenties (whatever, I'm celebrating my 29th birthday again this year, so I will always be in my late twenties ... what?) with this kid who was constantly getting in trouble at school.  He had a desk separate from the other students and a teacher who was desperately trying to teach him.  He had tantrums that would last for an hour or two.  He couldn't deviate from a schedule.  Loud noises would make him meltdown.  He talked to himself endlessly, full conversations about everything and nothing.  The question of why he did those things was a constant thought, but with a 26-page report on the test results and diagnosis, I had my answer.  Why?  Because he has ASD.

So his behaviors weren't because he was just weird.  Or because we were bad parents.  Or because I was a bad mother.  Or because he was an asshole.  No, it was because he fell somewhere on the Autism Spectrum line.

There was a huge sense of relief that came along with the diagnosis.  I felt oddly free, lightweight.  I felt boundless.  That was all very short-lived, because as soon as I got home I began to really read through the report.  The basis was to rule out every possible disorder.  So many acronyms and disorders to go through.  Some of it was difficult to understand, some of it was difficult to accept.  So many of the symptoms of one thing bleed into another.

In the end he has ASD and ADHD.  He has many symptoms of OCD and SPD, enough to where we need to be mindful of those symptoms.  But now with the appropriate acronyms to apply to my son, I could get him into therapy and do research and begin to help better our lives.  His IQ was scored very, very high, so we had to keep that in mind as well.  The high IQ would be a struggle and a curse, but that's something I plan to expand on later.

The research began, endless hours on the internet reading articles and other blogs to find out what methods worked best for ASD kids.  I made lists of things to try to implement in our house.  We bought tools and created schedules and charts.  We overhauled our house, our language.  Everything changed.  Everything shifted.

A few months after the diagnosis, J had a terrible tantrum.  He screamed and kicked for over an hour. He pounded on the floor.  I was trying to take a nap and my husband was out in the living room with the big boys.  I was pregnant, so Tiny was literally tiny inside me, and I just wanted to sleep, but all I could hear was this utter chaos outside the door.  I didn't hear my husband at all, just the screaming tantrums of J.  And then the tantrums were slightly more muffled; my husband had picked him up and put him in his room so he could finish his tantrum there.  I don't know that I ever took my nap, but I did cry.  I began to mourn.

I mourned for J, the normal child that I lost.  All the hopes and dreams I had for him were being replaced by this new child, a child with a disorder, a child with Autism.  I would have to come up with new hopes and new dreams.  I would have to come up with a new reality, because the normal child I had was gone.  With a diagnosis came the realization that having a normal child was a thing of the past.  When he was a baby, I thought he was a normal baby.  A normal toddler.  A normal kindergartner.  I knew something was up, but I thought (hoped) it would be some ADHD and with a bit of therapy and possibly drugs, he'd be completely normal and have friends and a happy life.  Of course, even with ASD he can have friends and a happy life, but he'll have to work at it.  We'll have to work at it.  The whole family--

And that's the point where I began to mourn for my family.  We would never have a picture-perfect family.  Not anymore.  We would have to come up with a new definition of perfect, a new definition of a "good day," a new definition of normal.

So while parts of the diagnosis felt very lucky (after all, my kid is not an asshole), some still feel very heavy and difficult.  But all of that is okay, all of that is normal.  Even if "normal" has a brand-new meaning.