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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 to “Spinning, Spinning: The Diagnosis Roulette”

#1 Posted by goodfountain (05.09.08 at 19:36 )

Hi – delurking to ask if you’ve ever heard of the term Hyperlexia? Reading 4th grade level when starting Kindergarten, coupled with the other delays and the SPD, sounds like Hyperlexia.

My blog will give you more info about it as well as some of the other blogs in my blogroll. As well as good ole Googling.


goodfountains last blog post..Next up, Orientation

#2 Posted by Katherine (05.09.08 at 20:16 )

I have no wise words of advice. Except this picture of your son reminds me of one of my very favorite poems. I bought the picture and it is hanging in my daughter’s room from before she was born and we thought she may be a boy, I love it so much I left it there. – http://www.storypeople.com

It is under ‘prints’ and is called ‘crayon pirate’, it’s about a boy and his giant imagination.

Katherines last blog post..Guilt be gone!

#3 Posted by Heidi (05.09.08 at 23:14 )

Elizabeth, I loved reading about Edward. My word for him is delightful, so you can add that one to your list!

I know this journey you are on is full of unknowns and frustrations, but I am so glad that you are finding the joy, humor, and love in it…and I am SO glad you are sharing it. It blesses my heart. Thanks, friend.

Heidis last blog post..Are you a Lurker?

#4 Posted by mrsbear (06.09.08 at 00:05 )

I can’t imagine how frustrating it must be, especially considering as parents we are always looking for answers and explanations. You’ve got a great perspective on this, he is more than a plethora of diagnoses. He’s awesome, you all are. 🙂

mrsbears last blog post..Stocking Up For Ike

#5 Posted by Corina (06.09.08 at 00:39 )

He sounds like an amazing child. Great to have a conversation with, and quirky to boot. I love quirky kids. It sounds like he might need remediation in some of the motor skills, but it sounds like occupational therapy that you are pursuing will help with those issues. As long as the issues are being addressed, the label does not matter. Revel in the quirkiness, and the amazing abilities.

Corinas last blog post..Community Organizers: You have my respect

#6 Posted by hellokittiemama (06.09.08 at 02:43 )

I hear ya loud and clear.

We’ve done the spinning and we do it every day.

Dx? We have had so many different ones in the 7 years of my son’s life.

speech delay
Sensory Processing Disorder (formerly sensory integration dysfunction)
“autistic tendencies” (not even a real Dx)

Gosh.. I’m sure I’ve left some off. Ultimately, my son is just that MY SON. He is Alex and he is amazing. Just like your Edward, and just like every child. They are a child and not a ‘label’ and that is just the way it should be.

I’m so glad we “met” on here and truly wish we were closer geographically for both us and all of the kids.

#7 Posted by Stimey (06.09.08 at 09:09 )

In the end, a diagnosis is just a word. Take from it what you can. Leave what you don’t need. Use what helps for your child. It sounds like you’re doing great with your son.

Personally I LOVE the quirky of all my kids, diagnosed or not. 🙂

Stimeys last blog post..Photos of Nine People Who Look Nothing Alike

#8 Posted by Helene (06.09.08 at 11:32 )

I totally agree with Stimey’s comment! A diagnosis is just a word, it’s really just a label when you think about it. Each child is special and gifted in his/her own way. From what I’ve read on your blog, you are a wonderful mother and he will continue thrive with you by his side!!

Helenes last blog post..Horrible Mommy Episode #325..oh who am I kidding, it’s really #674

#9 Posted by Andrea Cook (06.09.08 at 14:17 )

Great story. I love hearing other moms tell the stories on their discoveries. Isn’t it so confusing as you go along? I keep having to look at photos and videos b/c sometimes I get so confused on my kids ages and if and when they hit their milestones.

BTW, my 6 y.o. also read at 4th grade level in Kindergarten. She is now in first, reading at 9th grade level!!!

Trying to see both my daughters’ strengths and not their deficits!

I love your description on have they always been like that – the chx finger part was so cute! You’re so funny! I enjoy your reading and our friendship so much!!!

#10 Posted by Hilary (06.09.08 at 14:51 )

I think you’re my new hero.

As for Edward … I think I’ve fallen in love.

Hilarys last blog post..This makes it all worth the while!

#11 Posted by Kim (06.09.08 at 16:04 )

I LOVE Edward – he always makes me laugh and challenges me to be “on my game” when I am around him 🙂

My word for Edward is the same as yours WONDERFUL!
Love ya

#12 Posted by Danette (06.09.08 at 16:18 )

What a great post! We often get a similar question, “are they always like this?” (usually in reference to how hyperactive and loud they are, as they are running in circles and screeching or laughing like it’s going out of style). Depending on my mood, I might give them a simple yes, or I might answer with, “like what?” or “no, only when they’re awake.” lol

Your little man has some impresive achievements! It’s great to focus on those while still giving him the support he needs in other areas. I tend to look at it as all kids have their strengths and weaknesses, kids on the spectrum just tend to have rather extreme strengths and weaknesses (relative to their peers anyway). ((hugs))

Danettes last blog post..Musical Bitty – part 2

#13 Posted by Tara R (06.09.08 at 20:00 )

well… you already KNOW I understand. I think it’s really cool though that he can read so well already! Not my boy. But he’s learning.

Tara Rs last blog post..I heart your blog award

#14 Posted by Patty O. (08.09.08 at 16:39 )

It is hard, isn’t it having an “unusual” child? People and their labels make it that much more difficult. But I love that you bring up how delightful these kids are too. People are always looking a bit askance at Danny because of his incessant quoting of movies or his need for constant movement, his inability to handle change or disappointment well, etc. But they don’t always see his amazing exuberance and fun-loving nature, his love for learning or his really funny, quirky sense of humor. I know the labels can help get services sometimes, but I wonder what they do to kids at the same time. I am torn on that issue. Your Edward sounds really, really awesome.

Patty O.s last blog post..so what does this mean?

#15 Posted by Ashley (12.09.08 at 23:40 )

I have decided that fitting into the “box” requires an additional level of effort that exhausts me! These precious children that are outside of the box have brought us such incredible freedom! I delight in wondering what Edward will become one day – let me assure you it will be SOMETHING Great! Keep planting your seed!

Much Love Ashley