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Spinning, Spinning: The Diagnosis Roulette

“He’s definitely got his own channel!”  Has he always been like this?

Over the years, this has been an all-too-familiar question for our family regarding our now 6-year-old, Edward.  Sometimes we hear this question for exceptionally wonderful or riotously funny reasons, and sometimes for confusing and somewhat concerning reasons.

If you are the parent of a child who hovers a few inches (or feet) away from the “box of neurotypicality,” or for whom there is no box in the visible horizon, you might know how I feel.

The first time I heard this question, my Edward was 15 months old.  He talked up a storm, knew all his numbers and letters, as well as the names of all typical and obscure musical instruments, and was an incredibly social child, too.  He never experienced any regression.

Still, he could not stand unassisted and certainly was nowhere close to walking.  He had macrocephaly, chronic ear infections, wretched allergies, sleep apnea, was underweight and fell so much his forehead was constantly peppered with bruises.

I won’t bore you by chronicling his development year by year, but I will share that academically he has always rushed ahead at a break-neck, almost frightening speed, while executive functioning, fine-motor and gross-motor skills have lagged.

I had such high hopes for Kindergarten.  After all, my child read on a 4th grade level the first day of kindergarten!  Certainly he would sail through this childhood milestone even if he couldn’t unpack his backpack, stand in a line or button his shirt.  I daydreamed of reading proudly in the Kindergarten class while my darling sat at my feet, looking up in adoration at his mommy in her neatly pressed cropped pants.

Instead, my sweetheart spent reading period either correcting the pronunciation of the teacher’s (or my) reading or busily prying up carpet glue.

I will never forget the day a well-meaning substitute teacher looked me in the eyes and delivered the blow: “You realize he’s twice-exceptional…and probably falls somewhere on the Spectrum.”

Boy, that hurt.

I always knew he was gifted.  I had just hoped the giftedness was the reason other behaviors and abilities weren’t falling into place.  I clung to that hope for a long, long time and while I believe that is still true to a certain extent, I have also come to terms with the truth that he needs quite a bit of intervention in several areas.

I am well aware that considerable controversy surrounds the concept of the Spectrum, and I do not pretend to be educated enough to even comment regarding which diagnoses should or should not be placed on that spectrum.

Intuitively, I feel he flits somewhere around the Spectrum.  I’m just not sure where, and from where I sit tonight, I’m not sure it truly matters.  And while one day it seems he is at one end, the next day he’s in a different spot.  I guess that is why they call it a “Spectrum.”

At this point, I’ve got about six different terms that have been written down on several different evaluations completed by everyone from neuro, clinical and developmental psychologists and occupational therapists to babysitters, grandparents, neighbors, speech therapists and well-meaning school principals.

And they are all quite, quite different.

Some of them include the word “possible.”

I just love that.

Yet what I am trying to do at this point is choose the interventions that best address his immediate needs, and not become paralyzed by this possible label or that potential definition.  God is helping me to see beyond the confines of this vast array of terms that have been used to describe my child.  Because they certainly don’t define him, or any other child.

So now when I hear the age-old question, “Has he always been this way?”  I have to smile slightly and wonder inwardly:  “So clever, so dramatic, so hypoglycemic, so hyperactive, so funny, so curly-headed, so inquisitive, so chicken finger-loving, so outspoken about foodborne illness, so…wonderful?”

And then I smile and answer, “Yes, he has.”  Because whatever he or she means, it’s probably true.

We fashioned “the box” into a pirate ship and are sailing, sailing, sailing.

They’ve each got their own channel, too.

Don’t we all?

Posted on 5 September '08 by , under Autism Spectrum/Sensory Processing, Faith is the Evidence. 15 Comments.

Things We Say to Psychologists II

Since the diagnosis roulette wheel has finally slowed to a stop, I have gradually begun to feel a bit more comfortable with Edward’s Asperger’s diagnosis.

I even told my mother about it this week without crying or hyperventilating.

Still, it’s always a bit nerve-wracking to go into developmental assessment and psychological testing type situations even though I am now armed with a hefty binder of reports.

I find that Edward, too, has began to thrill to these types of meetings and assessments.

(Wait a minute, he always thrilled to them…)

We found out about a university-run social skills summer camp a few months ago and decided to apply.  Of course Edward had his sites set on a “survival skills” camp, but since social skills are so closely tied to survival I didn’t feel like I was being too terribly deceptive in telling him he was “trying out” for a survival camp.

He did decide to wear some camouflage pants.

We arrived early where Edward asks the receptionist about thirty thousand questions about a small desk water feature.  One question involved whether or not the plastic ball that spun about in the milky water was made from extruded plastic.  The poor woman was just trying to type.  Just trying to answer the phone.

Interestingly enough, although we were 45 minutes early, we were soon called back for our interview.  We are greeted by two bright-eyed child psychologists who look like grad students.

Edward settles himself comfortably at the interview table and addresses the camp psychologist:

“So I see you are a convict…”

The poor youthful psychologist looks at me quizzically.  I point to the stripes on his shirt and nod.

Next Edward is required to describe what is happening in a variety of photographs depicting various childhood social situations.  A child who has clearly fallen and skinned his knee is described as “demoralized” and “gravely wounded.”

Naturally he devises a complicated system of checking off the questions as he completes them.  This involves creating an icon for each item based on a team that his soccer team, the Slimers, have played and supposedly defeated.  It’s terribly complicated and time-consuming but the psychologist handles this patiently and E completes the interview after soundly beating the fellow in three games of Connect Four.

At this point, a reward-treat is offered and Edward trots off to procure it with the psychologist while I meet with the other camp counselor who assures me that E is a wonderful fit for their camp and that he will probably enjoy the drama and acting the most.  I assured her she was correct about that, and that I was potentially planning on selling plasma to pay for the insanely expensive camp.

A few minutes later the other youthful psychologist enters the room and looks around nervously.  Then she whispers to me, “I left all the treats at the other office.”

She begins to scramble about bags of coffee creamer while Edward eyes her expectantly.  “I’m sure you’ll find a suitable treat for me,” he assures her, and continues to grill the other psychologist about whether or not the camp will involve squeezing water out of animal dung.

All of a sudden I eye a bag of mint Life Savers.  “Here, this will work perfectly!  He never gets any ‘normal’ candy so he’ll be so excited about this,” I assure her.  She looks skeptically at me and hands me several mints.  “No,  just one is enough.  There is probably some sort of artificial color in there somewhere and we can’t have much of that…”

She presents the mint to Edward who beams like she’s handed him a gold bar:  “Thank you, thank you, thank you, Dr. Kelly!  This is just what I wanted.  Just perfect!”

And with that we are off to collect the van in the free valet parking area.

You have to love a children’s medical facility that provides free valet parking.

Posted on 1 April '10 by , under Autism Spectrum/Sensory Processing, Humor/Disconnected Miscellany. 7 Comments.

Where Have I Been??

Where have I been?  When my dear friend, Kia, sent me the message: “Dood, where’d you go?” I started to wonder myself where the last two weeks have gone, and I’ll have to admit, the wondering stumped me in a frightening way.

So tonight, while my husband has gone cougar hunting (for the real animals, people) with friends for the weekend, I am feeding my children popcorn and donuts, and allowing them to watch 102 Dalmations (mild violence) while I try to catch up.  (Thank you KinniKinnick for your awesome GF/CF cinnamon sugar donuts!)

(Yes, I did say cougar hunting.  Apparently cougars can be quite a menace, although H has never killed another living thing since, as a young boy, he shot a bird with a bow and arrow crafted out of a windshield wiper blade.  I feel confident regarding the cougar population’s longevity.)

So I decided to run through my calendar and pictures for the past two weeks and see what all I actually did accomplish.  Here’s the short list:

1.  Help Edward prepare for City-Wide Home School Spelling Bee, which included words like “suet” and “concentric,” while simultaneously adjusting to a new developmental psychologist.  “What are you drawing, Edward?” she asks as he draws circles encircled by circles, endlessly.  “Oh, those are concentric circles…you know c-o-n-c-e-n-t-r-i-c…Sort of reminds me of the little poem, ‘A Thief in the Night, t-h-i-e-f!’   “Yes, well…I…”  She looks at me, puzzled.  “Why is he spelling everything?” she whispers, scribbling furiously on her notepad.  (Glory be, she’s found yet another diagnosis!)  “Oh, he’s just preparing for a big spelling bee,” I encouraged.  He then regaled her with a long discussion of Cuba and communism followed by questions about positive and negative cognition.  “There’s just so much dyssynchronous development going on here…such an amazing cognitive ability while the social…”  “Yes!  Dyssynchrony!”  Edward chortles!  “I can’t spell it but I know it means ‘uneven’!”

2.  Teach children how to use a napkin properly.

Did I mention we have a new puppy?

sophie-sleeps

3.  Celebrate Joseph’s 9-year-old birthday with a trip to Olive Garden.  (Remember, it’s a chain-obsessed town.)

olive-garden

Did you know new puppies don’t sleep well at night?  And if they sleep in your child’s bed, they will relieve themselves at the corner of the bedspread?

4.  Receive training in how to administer growth hormone shots to Edward.  Give growth hormone shots to Edward.  Every. Single. Night. Possibly. For. The. Next. Ten. Years.

Were you aware that new puppies get sick when fed too many raisins and popcorn?  Not to mention the gas that particular combination creates in the newborn canine digestive system…

5.  Attend Sue’s “Muffins with Mom” celebration at her preschool while darting out every three minutes to check on the other two boys who are found, red-faced and sweating, pummeling each other with pillows in the youth room while five calm, homeschooled girls watch Little House on the Prairie videos.

Have I mentioned that we have a new puppy and she’s learned how to bark.  Really, really loudly?

sophie-chews

6.  Spend one day at a City-Wide Homeschool Spelling Bee followed by carpooling followed by borrowing every electronic hand-held game known to man in preparation for nine-year-old having two spots removed at a local dermatologist known for two-hour waits.  Sit with 3, 7 and 9-year-old in a waiting room while a TV monitor drones endlessly about the latest psoriasis treatments…field endless psoriasis questions:  “Do you have psoriasis?  Did I ever had psoriasis?  Do you think that lady has psoriasis?  Look how gross the psoriasis looks on that TV screen!  Are those things scabs?  Will that Humira help?  What does that girl have?  Do you think she has eczema?  Doesn’t she look like a babysitter we had once?  I know I had eczema and so did Joseph!  Did we take Humira?”

The questions are wearing me down: “Why can’t you play with that hand-held Star Wars thing?  Isn’t that why we borrowed it?  Why aren’t you playing it?”

“It’s out of batteries. I think it needs to be recharged.  Did you borrow the charger?  You know it comes with a charger.”

I rifle through the bag.  “There’s no charger!  Just watch the psoriasis show until they call our name!”

“Do you think I will ever get psoriasis?  Why is the ‘p’ silent in psoriasis?  Is it a Latin word?  What’s your favorite Latin word?  Do you have to know a lot of Latin to be a dermatologist?”

Did I mention we have a new puppy?  (Yes, she is peeing.)

sophie-pees

Gone cougar hunting.  Check ya later!

Posted on 16 January '09 by , under Accidental Homeschooling, Autism Spectrum/Sensory Processing. 15 Comments.