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Monday, July 5, 2010

Drowning in a Sea of Information

(WARNING: This post is exceedingly long and prone to incoherent rambling.  Read at your own risk.)

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Have you ever done extensive research on a subject only to find yourself conflicted about the results?  It's a new feeling for me.  I've always enjoyed research, whether it was for a book I was planning or a purchase I was about to make.  Research was fun because learning was fun.  I love to learn.

Until now.

The results (thus far) of my current research have left me floundering and confused, even scared and kind of hopeless.  This is probably because of the reason for my research.  It's not for the benefit of a work of fiction or the purchase of a new toy.  It's not a vacation or deciphering an odd dream.  It's my son.  My son's life.

In previous posts on my old blogs, I've discussed challenges my LittleDude faces -- more for my own benefit than anything else, though it's always been a real bonus if it helps somebody else.  I've talked about his tentative ADHD diagnosis and medication.  I've mentioned his psych eval and counseling.  I've covered his struggle with springtime allergies.  I've lamented his battle with Alopecia Areata (AA).  I might have even touched upon his learning disabilities (dyscalculia and graphomotor/dysgraphia issues).

In reading that last paragraph, you may get the impression LittleDude is a sickly child.  His AA (which has caused the loss of 98% of his hair including his eyebrows and eyelashes) leads many people to mistakenly presume he's currently undergoing chemotherapy.  He is neither of those things.  He is a boy with a large vocabulary and a quick smile.  He loves deeply and gets his entire body involved when he laughs.  And according to his psych eval, he suffers from a "nonverbal, contextual learning disorder."

That's when my research came in.

As soon as I received the diagnosis (a year after it was completed, but that's a whole 'nother blog post) I did what I presume any concerned parent would do.  I googled all the unfamiliar terms.  Some were easy enough to understand, but one, the big one, required more than a quick Google search.

It was that pesky nonverbal, contextual learning disorder.  The first thing I learned was Nonverbal Learning Disorder (NLD or NVLD) can't be explained in a single sentence.  I also learned that a lot of the articles about NLD are extremely dry and, with respect to their authors, were excellent at putting me out on those nights when sleep was elusive.

I wasn't too concerned initially -- because we thought stress or anxiety could be triggering LittleDude's AA, we already had him working with a counselor.  But now, a year later, his counselor is almost ready to discharge him.  Clearly, the time has come for me to become better educated on the challenges my son faces.

I reached out to the NLD mailing list:  What books should I be reading?  I made purchases based on their recommendations, and that's where I am now.  Reading books.

Sounds benign enough, right?  What harm could a couple books do?

HA!

Let me preface this by saying both books (which I list at the end of this post) are excellent.  They are informative, easy to read, and I'm coming away with a better understanding of what my son's going through.  So in those regards, these books have succeeded.

Unfortunately, they've also succeeded in scaring the snot out of me.  Thankfully, I don't mean that literally, though it's pretty darn close.

Scary thing #1:  the book titles.  Both are very simple and straight forward.  I looked at the book covers and knew immediately what the books were about.  Always the sign of a good book, right?

These titles indicate they're about Nonverbal Learning Disorder and Asperger's.

Asperger's?

While I've never neard of NLD, I had heard of Asperger's.  Admittedly, I didn't know the exact nature of Asperger's, but I did know it was no small deal.  And now, before I'd even cracked these books open, I was terrified.  My son has something comparable to Asperger's?  That wasn't good.

Scary thing #2:  Scary phrases like not learning math beyond a fourth grade level and never be able to live independently.  The good thing here is these books show these phrases to be untrue, but still.  As a mother of an NLD child, once I've seen those phrases, how am I supposed to forget them?

Scary thing #3:  While there was some degree of comfort in the fact that I now had an explanation for many of my son's behaviors, it's terrifying, too.  In those first couple chapters, a majority of the behaviors described as NLD are behaviors I see in my LittleDude.  If there was any doubt before of my son's diagnosis, it's gone now.

Scary thing #4:  Where the heck do I go from here?  With the deck so stacked against my son, how do I help him?

Knowledge can be a good thing.  A powerful thing.  But in my case, knowledge had left me devastated.  Depressed.  And distinctly feeling like I'm in way over my head.  I'm drowning without a life jacket or water wings in sight.

It really is a scary thing.  With information more readily available, it's too easy to overload.  Knowledge might be a good thing, but too much of it can be dangerous.  And I seem to be a sucker for the danger.  I've been reading NLD mailing lists.  I've searched out every website I can find that mentions NLD.  I've searched for support groups and have even reached out to a local Asperger's group.  I'm a victim of info overload, and now I can't figure what's next.

This is where my extended family and my friends lose patience with me.  I don't ask those who love me for help and support.  I don't know how.  Instead, I internalize.  I disappear into my own head and try to figure out how to solve the problem.  I stop socializing.  I fret and worry and make myself sick.

So, how do I close this post?  I have no idea.  I've not yet found my answers.  My stomach is still tied in knots.  I'm still in way over my head.  And I still don't know which way to turn.  Not a happy ending.  The good news is it's also not the end.

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RESOURCES

6 comments:

Tess Harrison said...

((Hugs!)) I can't even begin to know what your going through. But if you want/need to talk, you know where to find me. I do know what you mean about becoming lost in the 'Sea of Knowledge'. It's a scary place.

Lynn said...

Thanks, Tess. I appreciate that more than you know.

MK Chester said...

As I was recently diagnosed with MS, I can commiserate with the 'scary things' and overarching, inclusive conclusions. The comforting thing (to me) was that all cases/people are different. Can you get into a network of parents coping with the same thing? That might put some immediate, working knowledge in your hands. Hugs to you!

Lynn said...

Thanks, Marty. I was hoping to find a local NLD group, but no such luck. Perils of living in the sticks, I guess. I'm waiting to hear from a local Asperger's group -- close is better than nothing, right?

Hugs on your MS, and BTW, your wedding pics are gorgeous!

Andrew Ironwood said...

As someone who, nearing 50, is just *now* getting his 'official' Asperger's diagnosis, just wanna say it's not necessarily *that* big a hurtle [grin] -- thought, hugs, and an available ear anytime...

Lynn said...

Andrew, you have no idea how much your comment and offer is appreciated. (And I'm so sorry for the delay in approving it!) I'm dealing with things as best I can.

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