An exhausting work of unbelieveable awesomeness

This is the post I've been trying to write for days but I'm not sure what to say or where to start.  I keep coming back. Erasing. Rewriting.  Erasing again. How much to share, how little, or even what to say, I just don't know.

This is a post about the Budge.  The boy who has confounded us since birth and has been crash-bang from the start. The boy who not only lives outside of the box - he stubbornly refuses to acknowledge the existence of a box at all. Perhaps he is a genius.  Perhaps he is a madman.  None of us know yet - time will tell.

Last year, as he adjusted to Kindergarten - his quirks got worse.  Lack of understanding of social cues, chewing on everything, soundtracking (this is what we call his constant creation of low-level noise): you could go through the manual for a kid with sensory issues and the Budge would fit the bill.  We discussed our concerns with his teachers and discovered that, over time, his issues lessened, his teachers grew comfortable with him, and the general feeling was that nothing that was happening was terribly outside of your average high-needs, sensory-seeking, spirited five-year-old.

We all came to conclude that he was an oddball, but his strangeness would not get in the way of his education and as such, we could let it go.  Perhaps we were fooling ourselves.  We consulted educators and counselors and got a general response - he's a tough kid, but he's fine.  It'll be fine.  Relax.

And relax we did until June when his reactions to discipline in all forms became so extreme that every time he was disciplined or corrected, we heard some variation of I wish I were never born! or You HATE me! Thus followed a downward spiral of weeping, misbehaving, and hurting himself.  We couldn't pretend that he was just an outside of the box kid any longer.

Unfortunately, his six-year-well-child checkup with the physician we've used since birth unearthed a rather common thread in our interactions with people:  He was fine, but we were probably just shitty parents who didn't discipline him enough.  After our low in early June, though, things got slowly better.  That fact combined with changes we'd made in parenting/discipline and the doctor's commentary led us to believe that a little work would make everything okay again.  After all, hard work always pays off, right?

And pay off it did, until school started again.  We are two weeks deep into his first grade year and The Budge has seen the counselor no less than 10 times.  He's had to be removed from the classroom several times.  Some days he's weeping, others he's hiding under his desk.  His complaints range from the physical (vision impaired, having headaches, can't breathe) to the emotional (doesn't feel safe, is sad) to visions of persecution (being bullied, everybody hates me).  Our high-needs, highly-emotional, tightly wound boy is moreso - and his commentary about wanting to hurt himself is finally triggering the district, counselors, teachers, and doctors to listen to us when we say we JUST need to know how to help him.

I spent at least 20 minutes per day on the phone with his counselor or teacher last week.  There were notes and e-mails and follow up e-mails and phone conversations.  His counselor and teacher both refer to him as "exceptional" and "brilliant" and "charming". He's been put on the watch list for Gifted and Talented - but with the tag "Double Exceptional".  This means that in addition to being very smart - there is some other special education/learning disability to conquer.  We don't know what it is yet, but an appointment with another physician next week and the occupational therapist will hopefully unearth at the very least a direction or diagnosis so that we can help him.

Let me be clear: I don't want to FIX my boy. I don't think he's broken.  I think he's intense, in touch with his emotions, and highly intelligent. I would never want to make that go away.  I do want to make him the best possible student he can be - which means giving him a set of tools that will allow him to work in a classroom.  I want him to be the best possible friend he can be - which means giving him another set of tools that allow him to work well in social situations.  And eventually, I want him to be the best possible grown man he can be.  All of that means that now is the time to learn these lessons.

But in the meantime, as we wait for some sort of diagnosis - a set of terms to use to understand the boy we are to parent, we are lost.  And as his mother, I cannot help but question every moment of conception, pregnancy, infancy, and his childhood - wondering what I have done to break his brain.  How might I have done things differently so that living would be easy for him?  Why did I go so long thinking he'd probably just be a strange guy but function just fine in this world?

We are also judged - for being too harsh, too lax, too slow on the uptake, too fast to push for diagnosis and help.  We judge ourselves probably more harshly than anyone else.

But finally, above all else? We are exhausted.  Our little man is intense to parent.  He's tiring to be around.  We can't keep up with him - and right now, we're asking that we not only keep up, but get just a tiny bit ahead of him to understand who he is, what he is about, and above all else, how to parent him in a way to make him successful in the most important way - happy, self-actualized, and surrounded by love.