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.

The Diagnosis, Part Two

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

Though our minds were already reeling, it turned out that the medical team wasn’t quite finished with us.  In addition to classic autism (as if that wasn’t enough to process for one day), Owen was diagnosed with a number of other issues:

·         Generalized delays in the areas of speech/language, motor, and cognition (OK, clear enough, and not a surprise)

·         Sensory processing disorder (SPD): a person’s nervous system receives a variety of messages from the senses and turns these messages into motor and behavioral responses.  When an individual has SPD, the messages aren’t organized appropriately (or what is conventionally thought of as “appropriately”), and the individual can have a host of issues, such as clumsiness, hypersensitivity to smells and sounds, anxiety, etc.

·         Feeding concerns (due in large part to the SPD): at the time of his testing, Owen had real issues with food texture.  No one texture in particular was troublesome to him; it was the combination of textures that caused the problem.  For example, he could eat bananas just fine, and he could eat potato chips just fine.  However, if he had just eaten six bites of banana and then tried to eat a chip, he’d gag.  His gag reflex was seriously overactive.

·         Hypotonia:  Owen has low muscle tone – a fact that’s been confirmed by a number of medical professionals.  Every doctor and therapist who has had any contact with him since his diagnosis has mentioned it. His joints are hyperflexible (wish mine were), and he’s kind of “floppy.”  I honestly can’t think of a better word to describe it. It’s particularly noticeable when he runs.  He just sort of flails about, limbs flying in all directions, and then the completion of the run is usually punctuated with a face-plant. Interestingly enough, his low tone is in stark contrast to his ridiculous strength.  At about eighteen months of age, he was sitting in the cart at the grocery store, reached behind him, lifted a gallon of milk from the basket with one hand, and set it in his lap.  I asked a therapist about this apparent contradiction some time ago, and she indicated that there’s a difference between neurological muscle tone and physical muscle tone.  His physical tone is top notch; his brain just doesn’t always send the right message to his muscles.

As shocking as some of these issues were, they were nothing compared to his overall development profile.  The therapists and doctor had rated Owen on a number of factors throughout the day and assigned an age equivalence rating based upon Owen’s command of each area.  Owen was three years and four months old when he had his testing.  Based upon his performance throughout the day, the medical team determined that he was a couple of months ahead of the curve as far as letter recognition was concerned.  I could’ve told you that, I thought.  He knows even more than he showed you…all of the testing was just getting on his nerves, so he was being uncooperative.

Owen’s “typical” performance ended there.  In the areas of self-help, gross motor skills, fine motor skills, expressive language, language comprehension, and general development, he had an age equivalence between two and two-and-a-half years old.  He had a delay somewhere between 25 and 30 percent in each of these areas.  The team was concerned, to say the least, but not nearly as concerned as they were about the final area of testing.  In the arena of social skills, Owen’s age equivalence was twenty months.  Twenty months.  I did the math in my head.  Three years and four months old.  That’s forty months.  Owen had the social skills of a child half his age.  I was stunned.  I was shaken.  I was emphatic that they were misinformed.  Denial is not just a river in Egypt, my friends.

Half his age?  I don’t know about that.  I mean, I’m not sure your basis for coming up with that estimate is really legitimate.  He’s just a little boy, and you’ve been putting him through the wringer all morning, so he’s tired and frustrated and simply doesn’t feel like socializing all that much.  I wouldn’t either.  I’d just want to be left alone, too.  Not only that, he didn’t have a lot of opportunities to socialize with others anyway.  Seriously…he spent all morning alone with doctors and therapists that he’d never even met before.  Do you really expect him to thoroughly engage with complete strangers?  You didn’t give my husband and I an opportunity to play with him.  He loves being goofy with us.  His older brother has been right in the next room all this time, and never once did you call him in so that you could see the two of them together.  Talk about crazy play and socialization when they’ve teamed up, believe me!  Do you really think you’re being fair?  I don’t see how you can possibly make that kind of decision without considering other scenarios.

I said all of those things.  Loudly.  Enthusiastically.  Passionately.

In my head.

The Diagnosis, Part One

This is the first in a series of posts related to Owen's diagnosis.

Although Owen’s diagnosis on that fateful day in May simply confirmed fears that I already felt were pretty well-founded, I was fairly shocked at just where the consulting physicians believed that Owen fell along the autism spectrum.

For the uninitiated among us, at the time of Owen’s diagnosis, there were five disorders that were classified as being on the spectrum:

·         Classic autism

·         Asperger syndrome (which has since been re-classified; Asperger’s is no longer considered its own disorder, but has rather been lumped into the more general “autism spectrum disorder” classification)

·         Childhood disintegrative disorder

·         Rett’s syndrome

·         Pervasive developmental disorder not otherwise specified (PDD-NOS)

If I had been forced to guess, I would have lumped Owen into the PDD-NOS group. Although he definitely had some obvious delays, I didn’t think his social issues were as profound as they typically are in children with classic autism or Asperger’s (or what I thought at the time was "typical" of either of those disorders; I now know that every case is wildly different from every other case).  Rett’s syndrome is almost exclusively seen in girls, and Owen did not have the significant physical issues that go along with Rett’s in any case.  He also hadn’t experienced regression, the hallmark of childhood disintegrative disorder.  Children with that particular disorder typically develop normally for the first few years, and then they lose the language, social, and motor skills (among others) that they had previously developed.  That left PDD-NOS. Generally, children with PDD-NOS have developmental delays and issues with communication and play, and while they do have some difficulty in their interactions with others, they’re generally too social to consider to be autistic.

Gasp!  I said the word “autistic.”  Embracing my own ability to become easily distracted from the issue at hand and commencing mini-rant in 3…2…1…

I’ve learned a number of things during the eight months that we’ve all been trying to adjust to our “new normal.”  Some parents blame vaccines (I don’t).  Some parents sing the praises of special diets (we tried it; it’s not for us).  Some parents are offended by use of the word “autistic,” since it puts a label on the child.  Instead of saying that the child “is autistic,” these parents prefer to say that the child “has autism.”  Is autistic.  Has autism.  Sounds about the same to me.  I’m far too concerned with helping Owen understand the world (and helping the world understand him) to get too caught up in the description.  You know what offends me?  Ignorance, not semantics.  Say it either way you want - doesn’t bother me.  Truth be told, I’d say that “Owen is autistic” is probably more accurate than “Owen has autism,” at least as far as our personal situation is concerned.  A person has a cold.  A person has a stomachache.  They are momentary afflictions, meant to be addressed and moved past.  Owen is autistic.  It’s not something to be ashamed of, it’s not something to treat willy-nilly, and it’s not something he’ll magically appear cured of one day (barring a touch from God).  It’s something that he, we, and everyone who loves him will have to deal with and address every single day for the rest of his life, and that’s OK.  It’s not wrong.  It’s not unnatural.  It just is.

Rant completed…where was I?

When the developmental physician handed me the paperwork that indicated that he and his colleagues were diagnosing Owen with classic autism, I was floored.  Not because I wasn’t expecting a spectrum diagnosis.  I was fully prepared for that.  I just wasn’t prepared for that one.