Tuesday, May 25, 2010
Simple...Just Walk a Mile in Our Shoes
Crisp and clean. The invitation is crisp and clean. Elegantly, it requests our presence at a special celebration...tonight. Simple.

Staring at the familiar, invitation pinned to a bulletin board amidst a whirlwind of multicolored papers, I feel a sense of pride. I’ve managed to keep the invitation, RSVP and even remember it’s for tonight. Okay, now we just get ready and go. Simple.

30 minutes....in 30 minutes everyone must be in the car. We’ve planned for days, this should be easy. So, why are two just now running for the shower? What is my teenage son doing sitting in his, clearly shorter, brother’s suit...eating strawberry jelly? And when did my little girl, switch her cute ballet tights for black, fishnet stockings from an old theatrical costume?

"Simply conquer and divide,” I whisper aloud, my faith wavering. Now, I can battle my daughter, or simply check her off my mental “done” list by letting her “grade school saloon girl” look slide. Simple choice really...CHECK.

Next, sending my “jelly guy” off to exchange his capri length suit, I run to each bathroom door and bang out two minute warnings, confident that success is still an option. On this cue, my “Jelly guy” strolls back in with the suit he “laid out” yesterday. Only now, it looks like it’s been wadded up into the space between the end of his mattress and his footboard...all night...because it was.

Whipping his jacket into a state of “theoretically ironed” against the couch back, my personal angst releases in each snap of fabric. Dog hair flies off his jacket and I pretend to feel clever. Afterall, ironing could never have produced such a dual benefit! No worries, his brightly colored tie will save the day as a distraction. I have this handled....two kids already done, simple-CHECK.

My youngest son in a fluke moment of cooperation is out of the shower and dressed! Grabbing a damp kitchen towel, I scrub away huge stains I’m first seeing covering his jacket...nothing to it! Third kid into the car-simple, CHECK. We are okay and ready to roll on schedule- almost.

Wait, my oldest has gone off my radar! Running for the bathroom door, a pit grows in my stomache as I repeat a silent plea. Please don’t let me hear the shower running, please don’t let me hear the shower running. Straining to NOT hear as I'm running...closer to the door.
The shower is running. Frantically, I get him to come out and go to the car-half dressed dragging belt, tie, socks, shoes, hair product etc. clumsily along. Simplicity aside, we might still make it on time.
My verbal checklist with each child reveals my bedraggled son forgot the tie I prayed would distract from his other wardrobe misfortunes. Too late, I realize my verbal checklist was not my best idea. There was no time to go back. “It’ll be okay,”...I quietly insist, willing it to be this simple.

As we arrive, with the kids settled down, I risk relaxing. Glancing one last time, in the rearview mirror, I see they really do look nicely put together. No signs of the earlier frenzied rush or the ravaged battlefield we left in our wake. As each steps out of the car, I put the finishing touches on our slightly skewed crisp, clean look and bask in my moment.
So Simple.

Last reminders on behavior and representing our family and I proudly, send them in. Confident that any slight flaws will pass unnoticed. Concentratedly relaxed, "we always look like this" steps, mark my own stride as we simply whisk into the celebration.

Stop! My slightly, wrinkled, tieless, son is hobbling in front of me? Shocked, I realize his right foot appears to be about a size 9, the other, about a size 12. Kneeling closer in disbelief, I'm horrified to see one foot is sporting a wing tip, the other a loafer. But something else is off....they're both right shoes! How?? His simple answer to my shocked query,
“You said hurry.”

Unlike the invitation, we are not crisp and clean, or elegant. We are lived- in, real, wrinkled, and often times...mismatched. A simple invitation came into our world where NOTHING IS SIMPLE. The loving senders innocently invited and, honored, we bravely accepted. Nothing left to do now but, ki
ck off our shoes and enjoy! HOW SIMPLE!

Friday, May 14, 2010
My three sons are strong, smart, driven, funny and flash smiles that melt my heart. As I remind them they are my "gift from God", "special angel" and "sunshine", they light up with pride. They know my unconditional love and acceptance of who they are....they love this, they need this, they deserve this. I deserve to see them through eyes of positivity and possibilities. They are my heroes.

Today, I follow the rules as I attend an IEP (Individualized Education Plan) meeting. Tearing away the curtain on one of my son's life of private suffering, I'm called upon to illuminate every problem in my own child. The battery of generic assessment tests won't expose every weakness, every challenge, every isolating detail of my beautiful child. With heartbreaking clarity and detail, my words of limitations and inabilities paint his portrait in the room.

Still, I fear he might be sent to a world beyond his coping abilities. He feels so very small and frail to me as I imagine him dropped into a whirlwind of unpredictable lights, sounds and motion. So, I turn a spotlight harshly on each true incapacity, as I spill the rest of his dignity, to the ground.I.E.P. Individualized Educational Plan, now an acronym for Illuminate Every Problem, I feel I sell out my son's dignity. There's no comfort knowing it's in the name of accessing that which is essential. Disloyally reducing his image to a list of disability based challenges, I try to not hear my own words.
No parent should ever have to persuade others to see how poorly equipped their child is to access common pleasures of a typical day in the realworld. I'm sitting on a campus of so many included students and I wonder sadly, what kind of a parent fights to have their child excluded? I just did.

I've fought for services, placements and support in these Individual Educational Plan meetings(I.E.P.). Worst fears openly bleeding out as I (I)lluminate (E)very (P)roblem hoping for help to ease my sons' struggles, by speaking truths that leave me so heavy hearted. I grieve anew for my children after such I.E.P. meetings...momentarily overwhelmed by the chasm between what could have been, and what is.

Now, alone in my car and watching typical scenes, in a typical world, I allow myself one moment to cry. My role right now is to reclaim my sons as the gift they are. Their window to this world allows them to see details and angles many will never have the privilege to share. They're often beautifully stunning with their "take on the world". I'm blessed to be in their life. In this IEP meeting, my role became Illuminating Every Problem. I've done all I can with the system in place and I have been of service to my child. Tomorrow, the system might change but, today my perspective remains- my sons are exceptional and unique. They are deserving of better than this system that makes already challenged and grieving families shout the painfully unspeakable. They deserve an IEP that Illuminates Every Possibility because they are endless.
It's dark. The day is done and I'm low on.....well, everything. My son is stuck... again. He's almost an adult now. Perhaps he's been asked to take turns, or share, or move to another seat, or change activities from one he's enjoying. Just one breath ago he looked like any average kid but now, he's questioning fairness and justice in a rapid fire, intense way that belies that fragile shell.
He's begun his nightmare carousel ride driven by so many factors and accelerated by anxiety. Around and around he explains his position. Again and again he clarifies, restates, defends this nonsensical position. He's unable to see the world around him clearly now as it mutes, blurred and distanced from his whirling ride.
I try to break in with my words, but I seem to keep missing him as he spins by me, away from me.
I feel like a parent standing by the carousel, desperately trying to snap that photo before the ride ends. So, I begin to plan for my next move to speak and now I'm no longer truly listening to him. Like that parent, I've traded this moment for a future one.
Unable to hold my balance in this dizzying dance any longer, I shut it down. I shut him down. I shut down. " I won't discuss this topic further. I won't. I won't. I'm sorry, I won't." Outwardly, I hold firm.
Stunned and confused a now small, young child desperately pleads with me,
"Why... can you just tell me why?"
Such a simple young question from a such a brilliant young man. He deserves an answer and I feel helpless holding his truth. Any words from my mouth right now, will only thrust him back on that nightmare carousel ride.

It's dark. The day is done. I'm low on...well, everything. My son is not stuck now- success. This is our beginning.