The Diagnosis, Part Three

This is the final entry in a series of posts about Owen's diagnosis

By itself, an autism diagnosis is enough to process for one day…too much, really.  Eight months later, and I’m still processing it.  I don’t suppose it’s anything that you ever stop working on understanding.  New strides are being made daily in determining more effective treatments, therapies, and interventions.  Sometimes, when you finally feel like you’re starting to make headway in grasping something, BOOM!  Something new shows up to throw you off your game. J  At the diagnostic clinic, we had been gifted with a medical team that helped us navigate the vast expanse of the sea of autism, but even then, the barrage of information we received in a one-hour period was enough to leave us with our heads spinning.

The team had a variety of recommendations that they passed along to us that day.  Although they had conducted an extremely thorough evaluation, they recommended that we have Owen participate in a separate evaluation to determine if he was eligible for a developmental preschool program.  These types of programs help children like Owen work on their cognitive, linguistic, practical, and social skills.  We are fortunate enough to live in a town large enough to have a developmental preschool nearby, so we were put in contact with them.

The team also recommended outpatient speech and occupational therapy services, in addition to the therapy that Owen would be receiving at his preschool.  His delays in these areas were deemed to be of enough severity to warrant the additional therapy.  The team mentioned that they felt this was of particular importance, since so many of the school-based therapies focus on behaviors that are desirable in a classroom environment as opposed to the atmosphere of home.  There is, of course, some overlap, but the outpatient therapy would also make us active partners in his treatment, enabling us to learn strategies that can assist Owen by making the world less overwhelming for him.

Above all, the team believed that it was of utmost importance for our family to be provided with sufficient information and emotional support to help us understand just how much an autism diagnosis can impact nearly every aspect of everyday life.  I think it’s pretty normal for families who are touched by autism to feel like they’re disconnected and alone sometimes.  During particularly trying periods, Bill and I go through stages when we feel lonely and left out, simply because Owen really can’t tolerate deviations from his routine.  Sometimes a simple trip to the grocery store is too much for him to handle, so we tend to go out in public in shifts.  That’s OK.  Time will help.  He has already improved so much from eight months ago, and every day with autism is different from every other day.  I have a very good friend who has a son with autism herself, and she can recognize when I’m having a bad day without me even saying anything.  She knows where I am along the autism highway, and every once in a while, she drags me into a rest area.  I hope every parent affected by autism can find a friend like that.

Nothing truly prepares you for an autism spectrum diagnosis, even if you believe deep down in your gut that you’re headed in that direction.  Your whole world shifts, and you’re hit with a cornucopia of emotions all at once.  The closest thing I’ve been able to compare it with is being unexpectedly roused from your sleep in the middle of the night.  You’re cozy.  You’re comfortable.  Everything is as it should be.  True, the blanket doesn’t always seem to stretch as far as it should, but you make do.  You can always throw on a pair of socks or toss an extra blanket on the bed.  And, yes, sometimes your husband snores a little too loudly for your liking, but with a swift nudge of your elbow, he rolls over, and unlabored breathing (not to mention, your much-needed peace) gets restored.  On the whole, though, there aren’t many things that can beat being snugly nestled in your spot.  In a stand-up comedy performance, Ben Bailey described it as “perfect comfy.”  All of a sudden, your phone rings, and the safe cocoon you’ve built to surround yourself is quickly decimated.  You’re up, but you’re by no means awake.  You’re confused.  Disoriented.  You can’t see well, you can’t think well, and (if you’re like me), you probably can’t speak in overly coherent sentences.  You don’t even want to know who’s on the line, because the phone rings in the middle of the night for one reason and one reason only.  Before you even pick it up, you know your serenity has likely met its end.

That’s how Owen’s autism diagnosis felt to me.  I am a notorious planner by nature, and this was not part of my plan.  Owen was going to be brilliant, yet funny; talented, yet humble; independent, yet loyal.  I mean, he already had the brilliant and funny down, so we were well on our way. J True, he didn’t speak very well, but he could verbalize well enough to make his needs and wants known.  And, yes, he seemed to tune us out from time to time, but if we kept at him and engaged him more, he would respond.  I could deal with that. My family was everything I ever dreamed it would be.  We were “perfect comfy.”  Then, all of a sudden, every dream I had built up turned on a dime.  I knew what autism was, but I didn’t really know autism.  I was lost.  Questions swirled like tornadoes in my head, and yet I couldn’t formulate one single question.  I was afraid to even read the diagnosis papers and treatment recommendations for fear of what was waiting for us on the other side.  I knew immediately that our lives would never be the same.  I was too overwhelmed at the time to understand that even with a spectrum disorder, over time Owen can still be brilliant, funny, talented, humble, independent, loyal, athletic, artistic, compassionate, energetic, patient, loving, and a whole host of other adjectives.  Ultimately, I’m just trying to raise a little boy who will grow up to be a good man.  In that regard, the destination is the same.  We’re just going to have to take a different route - and a few more pit stops - to get there.