... just beginning to shine

It's holiday season.  To some of us parents, holidays mean no school.  Which means our kid's routines get jacked up.  Which brings uncertainty to those dealing with special needs.  This past weekend, however, was definitely a win.  E and I traveled, dined out, met friends (new and old and deeply missed) .... My heart is full.

Thankfully, E's therapist, gave me a lot of ammo to run with on our weekend.  I've been dealing with other monsters, myself, and was glad to partake in our annual ritual with some beloved, genuine friends and get out of town.  We brought a bunch of sensory integration tools to our friend's house.  And it seemed to aid E well in having that outlet.  Being lost in the trees was a nice recharge.

I got to focus on E and I, over the break, mostly.  But also, I got to meditate on myself.  Not just as parent, but as an adult. My therapist reminded me about how it's good to accept and love the family that I already have.  And I've already gone through a good period of time of self-love.  Knowing (heartfelt) that I am valuable.  And more and more, it all feels more natural.  There's less and less of a void.  Anyways, it's so rewarding to see yourself wake up and acknowledge the progress, awareness, and change...  

Lastly, I got to reflect on having my friends. Not talking #friends ... or a facebook tally.  But ones that actually talk to you.  No holds barred kinda stuff.  I got to feel that gratitude about the real ones.  This past summer, I got one hell of a lesson in humility and humanity.  Deep in the shit, so to speak. "It takes a village"...  no joke. I'm not a super hero.  To raise E right, I've become more aware that I need to take care of me.  And lately, I'm finding ways to do so.   Sure, I want to take vacations just like any other parent. Do I?  No. Partially, that's my fault.  I fear asking for help, often.  Primarily because I'd feel so defeated when things don't pull through. Worse so, when I find out that I'm asking the wrong people. Doing it alone is tough... booking a sitter, just to paddle out for an hour seems convoluted... But this is the life we're living.  It's different.  You tough it up... You make it work.  Who cares about keeping up with the Jones's ? I sure as hell don't ...

5 rolls were sent out, yesterday, for development.  I'm excited.  And still, we're winning...

Lessons & Puzzles

Hey blog-o-sphere.  We've been pretty preoccupied, lately.  E's therapist and I had been focusing on approaching his behavioral changes that had developed within the past two months.  Long story short, E's need for self-stimming, had increased pretty significantly.  I understand the multiple facets of self-stim.  But this was a case of him adamantly seeking sensory feedback through teeth grinding, and seeking a disconnect to watch fans (and all things similar)..  Everybody that knows him, was starting to pick up on it, too.  This wasn't the normal E that we know.  I wouldn't call it a regression, as I'd see great feats (academic and social) still being accomplished. But it has definitely been a concerning sight to loose ground in cognition.  

This past week, we began some trials of a sensory diet.  If he's actively seeking that sensory fullfilment, watch what happens to his cognition levels when utilizing a sensory integration toolset in doses....  After 4 minutes, bouncing on a large balance ball with a weighted vest, with little prompts, he executed a few 1 & 2 step directives and stopped grinding his teeth.  we repeated similar things through the appointment.  By the end, it was close to dinner time.  And on his own, independently, E stated, "want food please".  I asked if he could clear that up and tell me what he wanted (because I wasn't sure what he had said). He replies, "I... want eat please".  "Good job! Is E hungry?", I reply.  He then picks up a stick of modeling clay (we use for sensory) and pretends (with sound) to take a bite out of it.  I was floored.   

So, we're trying new things out.  So far so good. More to share, but E awaits. 

Not to mention, my head has been in this other place, lately...

Some of these autism / parenting books seem to know how to punch you in the gut with a good poem. I think this one's been pretty applicable to my entire life, and not just raising Eli.  So, I'm gonna share:  

The Race

attributed to Dr. D.H. "Dee" Groberg
Whenever I start to hang my head in front of failure’s face,
    my downward fall is broken by the memory of a race.
A children’s race, young boys, young men; how I remember well,
    excitement sure, but also fear, it wasn’t hard to tell.
They all lined up so full of hope, each thought to win that race
    or tie for first, or if not that, at least take second place.
Their parents watched from off the side, each cheering for their son,
    and each boy hoped to show his folks that he would be the one.
The whistle blew and off they flew, like chariots of fire,
    to win, to be the hero there, was each young boy’s desire.
One boy in particular, whose dad was in the crowd,
    was running in the lead and thought “My dad will be so proud.”
But as he speeded down the field and crossed a shallow dip,
    the little boy who thought he’d win, lost his step and slipped.
Trying hard to catch himself, his arms flew everyplace,
    and midst the laughter of the crowd he fell flat on his face.
As he fell, his hope fell too; he couldn’t win it now.
    Humiliated, he just wished to disappear somehow.
But as he fell his dad stood up and showed his anxious face,
    which to the boy so clearly said, “Get up and win that race!”
He quickly rose, no damage done, behind a bit that’s all,
    and ran with all his mind and might to make up for his fall.
So anxious to restore himself, to catch up and to win,
    his mind went faster than his legs. He slipped and fell again.
He wished that he had quit before with only one disgrace.
    “I’m hopeless as a runner now, I shouldn’t try to race.”
But through the laughing crowd he searched and found his father’s face
    with a steady look that said again, “Get up and win that race!”
So he jumped up to try again, ten yards behind the last.
    “If I’m to gain those yards,” he thought, “I’ve got to run real fast!”
Exceeding everything he had, he regained eight, then ten...
    but trying hard to catch the lead, he slipped and fell again.
Defeat! He lay there silently. A tear dropped from his eye.
    “There’s no sense running anymore! Three strikes I’m out! Why try?
I’ve lost, so what’s the use?” he thought. “I’ll live with my disgrace.”
    But then he thought about his dad, who soon he’d have to face.
“Get up,” an echo sounded low, “you haven’t lost at all,
    for all you have to do to win is rise each time you fall.
Get up!” the echo urged him on, “Get up and take your place!
    You were not meant for failure here! Get up and win that race!”
So, up he rose to run once more, refusing to forfeit,
    and he resolved that win or lose, at least he wouldn’t quit.
So far behind the others now, the most he’d ever been,
    still he gave it all he had and ran like he could win.
Three times he’d fallen stumbling, three times he rose again.
    Too far behind to hope to win, he still ran to the end.
They cheered another boy who crossed the line and won first place,
    head high and proud and happy -- no falling, no disgrace.
But, when the fallen youngster crossed the line, in last place,
    the crowd gave him a greater cheer for finishing the race.
And even though he came in last with head bowed low, unproud,
    you would have thought he’d won the race, to listen to the crowd.
And to his dad he sadly said, “I didn’t do so well.”
    “To me, you won,” his father said. “You rose each time you fell.
And now when things seem dark and bleak and difficult to face,
    the memory of that little boy helps me in my own race.
For all of life is like that race, with ups and downs and all.
    And all you have to do to win is rise each time you fall.
And when depression and despair shout loudly in my face,
    another voice within me says, “Get up and win that race!”

Gonna end it on that.  E and I are just gonna keep on truckin'.

Greetings.... (?)

I kinda don't have the time to post anything substantial, right now.  Currently, my son is staring me down and repeating, "three, two, one, GO" as a means to get me to chase him around our home.  But, my friends are suggesting that I write a blog.  Is this going to be about photography? I dunno.  Maybe about raising my son on my own? No idea.  I think I'll just treat it like the songwriting, and write what comes up, when it does.  But this is my greetings to you, the grand, public interwebz...   Feel free to follow our wild ride.  E's adventures and my lessons in parenting; autism; and just plain tom-foolery.