Tuesday, January 29, 2013

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.

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