It’s Official

It was September, and I was sitting in a small chair in a doctor’s office not far from Yale University Medical Center.

It had taken exactly one week of school before I begged the teachers and therapists for advice, help, something that I could be doing for my son that I wasn’t already doing.  He was starting to talk now, one word at a time, with a total vocabulary of maybe 50 words.  But he still wasn’t toilet trained at almost four years old, and showing no signs of being ready for it.  His meltdowns were increasing in frequency, and R and Z had struggled when I had spent three days in New York on the Rick Springfield promo tour.   Without me there to anticipate his needs before Michael hit the red zone, the days had been a struggle from this trigger to that one.  Keeping peace in Michael’s world was all about anticipating the triggers.  But how could we remove them from his world?

The therapists suggested we see a neurologist to finally get a concrete diagnosis on paper for Michael.  While his needs were clear and well documented, before the age of three no one would actually give him a specific diagnosis.  If we were to indeed get the diagnosis they anticipated, they could offer him more services and then insurance might cover out of school services as well.

I sat silent in my chair, watching the doctor go through the tests again with my son, the same tests I’d seen done on him a year ago.   The questions were slightly more advanced, but all in the same vein.  I watched with a quiet sadness as one time after another, Michael either didn’t respond to the doctor at all or responded inappropriately.  It wasn’t going to be good, I thought to myself.  I could feel the heaviness in my chest.

“Boy, they always are this cute,” started the doctor.  I must have looked puzzled, because he continued.  “Kids on the spectrum.  They are often the most angelic looking kids.  That’s part of why it’s so hard for them.  They look like everyone else so no one really understands how much they are struggling inside.”

I nodded slowly.  “So he’s on the spectrum then?”  A  year ago I didn’t know what that statement meant.  What a difference a year made.

“Oh, definitely,” he answered quickly, maybe too quickly.  He turned around his clipboard where he had been marking Michael’s responses.  Michael grunted at me, which was his way of asking for the Cheerios he knew were always in my bag.  I absentmindedly reached in and handed him the round, yellow container and handed it to him.  “Look, here’s the range of scores on the spectrum.  0 to 29 is normal. 30 to 50 is on the spectrum.  Down here, in the lower 30s, are where you’ll see Asperger’s or PDD-NOS.  Go into the 40s and you’re looking at full blown autism or low functioning autism.”

I gulped.  “And where does Michael land?”

“He has PDD-NOS, pervasive developmental disorder, not otherwise specified.  It means he has some of the classic symptoms of autism, such as the speech delay, the lack of eye contact, the oral sensitivity.   That’s here in the low 30s.  It’s good; he may end up being higher functioning with a score like that.”

My heart sank.  The therapists at school had mentioned Asperger’s.  Dr. Google had told me that outcomes for children diagnosed with Asperger’s were much higher than for kids diagnosed with PDD-NOS.  But I also knew that he wasn’t talking yet, and Asperger’s kids often talked incessantly, amazingly showing knowledge they should be too young to have, like knowing all 50 states before age 3, and being able to list them in alphabetical order.  That wasn’t my kid.

“So what does this mean for him?” I asked, looking down at his tousled, long blond hair.  Haircuts were a nightmare; he kicked the last stylist three times.

“It means you need to work harder to get his neurons to connect with each other.  The more you can do early, the better chances he will have.  You already have him in the school, which is a good place to start.  You might consider adding some therapies outside of school too, as much as you can afford.”  I made a mental note to ask the school for recommendations on what therapies would be the best to add to his already rigorous in school program.

“Will he ever be normal?” I asked.  “I mean, will he ever catch up to regular kids?”

The doctor looked at me with sympathy.  “His brain is disordered, not delayed.  It works differently than yours, or mine.  That will never change.  But yes, you can figure out how to work with his brain to help him learn.  He can learn.  And I’m sure he will.  As to his prognosis, we’ll need to see him back in a year and see how far he has progressed; that will give us a gauge as to his potential.”

His potential.  Meaning, would he ever be able to be an independent, typical adult.

I could literally feel my hopes and dreams, not only for my son but for my self as well, slip away.

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