Thursday, June 20, 2013

The Bracelet

At a Christian conference, I recently heard Pam Tebow speak about how she raised her family.  Of all the sessions and speakers I soaked up, her story of receiving a special bracelet from "Timmy" is the take away I have with me weeks later.

Before playing in Miami for the championship game, each player was given spending money for the trip.  The Tebow men apparently are last minute Christmas shoppers, and so, Tim used this money to buy his mom a bracelet.

It was a charm bracelet, filled with orange and blue beads, his football number, and other Gator related memories.  She wore it on stage, and emphasized that since her son picked out every detail of the gift, it was priceless.  She wouldn't change a thing.

You would never change a treasured gift.

"Love (your kids) the way they came packaged."

Bullseye, Mrs. Tebow.  Ouch.

It is hard to love every bead on my kids' strings.  For each bead I cherish: compassion and friendliness, affection and gentleness; there are others I would happily exchange.  Some I'd leave off altogether.

They seem wrong. Not my style. Not what I want.

Just because something is imperfect does not mean it's not valuable.  (Right, self?)

Yesterday was a "this is not what I want" day. Today is one of those "starting over again" days.

I want to see the beauty of the imperfect.  I don't want to disregard it and hope for something better to magically appear. I want to accept my gift. I want to treasure it.   I don't always.  Today I do.

Some wonderful, some painful, some hidden-- but each piece was carefully selected.

A few days after I wrote this as a draft, I noticed this little treasure.  15 seconds of receiving grace from my son.  I want to finish a task.  He just wants to be near me.  That's a 'bead' I needed to see right now.

Wednesday, June 19, 2013

The Good Autism Parent and Plain Ol' Me

Both of these personas reside in me.  I became Good Autism Parent (GAP) in an instant and operate out of this persona publicly and privately most of the time.  Plain Ol' Me (POM) is not getting along with her right now.

GAP accepts the totality of autism and embraces the differences.

POM is sick of feeling needed by her son only to dole out milk and cereal. Sick of his crashing to his knees.  Absolutely done with the concept of toileting. Wonders if true independence will ever happen here.

GAP rejects the terms cure and fix.

POM just can't see the good in erratic fear.  Rigidity.  I'd take some fixing there.  Divine Healing. Anything that equals GONE.

GAP exhausts every avenue of therapy, diet, exercise and educational models.

POM wonders how to change a diet that is so severely limited.  How much fight does basic sustenance need to be?  Milk, fries, cereal.  GAP probably thinks they are akin to poison.  Maybe they are.  The best way to teach her son?  Mentally hiding in the corner there.

GAP graciously listens to stories of families like hers and seeks advice.

POM hates that I have to mention my boy is "not aggressive" as if  I was describing a housebroken puppy. Hates that I have a hard time listing his personality traits. Hates pretending that a future for him other than FULL independence is okay with me.  Cause it ain't. It just ain't.

GAP modifies expectations for milestones and holidays.

POM remarks casually to my husband that I'd just as soon skip Christmas this year and turns into someone who'd be confused with a paid mourner.  Ugly, raw disappointment stuffed over time spills out.  Eyes so heavy and painful. Sleep can only make it better.

GAP reminds herself there is immense, immediate suffering everywhere, at all times.  Her needs, in every way, are abundantly met.  Her boy can do so much.  Walk, Run, Talk, Laugh. Love.

POM is starting to realize that a proper perspective doesn't negate the reality of personal pain.  Even the first world kind.

Both love the boy with a gentle ferocity. That's all they have in common currently.

GAP doesn't want to bum anyone out.

POM walks the tightrope of honesty with you today.  I'm put out with my boy.  Annoyed, frankly.  And that's unfair of me.  But it's true.  I don't have a pretty bow to wrap up this duality.

It exists.  And admitting that is enough for today.