Wednesday, September 5, 2012


This week, we're cranking up more stuff to do on a daily basis.  So much more that I seem to have developed an over attachment to iCal.  We have so many things happening for the lot of us that depend of my remembering that I'm a little anxious that I'll double book or just forget.  Or forget to prepare.  Is it natural to wake up wondering if there was anything else you missed?

It makes me uneasy.  I want to keep up.  I want to keep all the plates spinning.  Not just keep the plates spinning, but with a smile on my face that comes straight from the heart.  Everyone where they need to be on time, and with everything they needed to be successful, and really, not have them notice.  I want my family to be together, happy, and feel safe, loved, and needed at home.  I want our home to be this sweet haven, a lighthouse complete with beacon, and a soft place to land.

Then imagine my surprise when I get home from school and the speech therapist is already here.  Whoops.

Make dinner, remembering at the last second that I needed shredded cheese.  Whoops.

Start to sit everyone down to eat, remembering #1, that Mae is soaking wet and #2, I haven't had her on the potty all day.  Double whoops.

Finish dinner with everyone, grab for Richie's Cubbie vest, can't find it.  Whoops.

Find it in the sewing room with the patch for finishing his last book still pinned to it, not sewn.  Whoops.

Did I mention Ryan refused even pizza for dinner?  Yeah, I decided to hand over the goldfish crackers for his speech therapist to use as reinforcers.  Whoops.

These are just the whoops moments I remember.  Or maybe just the ones I have the energy to recall at the moment.  But the thing that hits me is that I'm technically neurotypical.

Yes, I'm awkward.  I don't know what to say, especially in party-type situations.  As awkward as I am in person I'm exponentially awkward on the phone.  I'm not any good at riding the line between keeping up with someone and becoming a bit of a pest, and in sharing information about myself, asking for help in certain situations when I'm in over my head, I'm not known for being particularly straightforward.  I'm no good at picking out clothes, that kind of stuff.  Jeans, t-shirts, solid cardigans, and Toms or Keds tend to dominate because, as I like to say, they're Garanimals for adults.  Everything kinda matches.

But as many personality and social flaws as I feel I have, and as frustrating as change and a new schedule are for me, I don't know how Ryan does it.

Just when we got good and used to the summer schedule of being home, BAM!  Time for school.  Everything changes.

We work hard on minimizing the change by not really sleeping in all summer, then the week before we get up and dressed like we're going to school.  I have marker boards right by the door that tell him what he's doing all day and at what time, and we answer several times a day when the football game is, when church will be, and what day it is today.  He took the same backpack as last year with the same lunches, but a different lunchbox.  His shoes are the same down to the model number, just new.

Still, we can't make the whole world align to make things easy.  It seems exactly the opposite at times.  Just when things are beginning to go well and feel somewhat familiar and doable, something happens.

But we try anyway.  His teacher tries anyway.  His CE teachers at church try, too.  Even his grandparents, who are all three super-supportive, try to make things as comfortable and familiar as they can.

Even with all these people behind him, the changes are too much to handle.  They're upsetting and hard.  When you know all this, you can see why we just don't get out much other than to therapy and church.  So many seemingly minute changes throw him into a tailspin.  Today after school, as he was working with his at-home therapist, I saw that his milk cup was running low, so I thought I'd fill it.

Only he wasn't through.  Major tears and self-injury, even with me holding the milk jug and his cup in front of him, telling him what I was doing.

It's heartbreaking.

I'm not one of those people who is terribly into the "well, so and so has it worse than you, so be glad" form of self-motivation.  But to see my little man get out of the van every morning saying "mommy will come" makes me remember that I can do it.

If he can get up every morning and keep going on this alien planet, I can keep doing my God-given job of making sure his path is as smooth and prepared as possible.

Autism is big, but it's a label.  A word.  It really doesn't sum up who he is.  It's too broad to truly define him.  How my son is made is not the enemy here.  The anxiety that makes him melt down over a cup of milk, the self-injury... those are closer to the enemy.  But how do we fight?

Step by step.  Decision by decision.  Schedule by schedule, calendar by calendar.  Therapy session by therapy session, and at times minute by minute.

It's a bit like a perpetual game of Jenga.  You make the best decision possible, testing every piece that looks like it might be a good idea, but you gotta pull one sometime.  Sometimes the one that looked like it would be easy, and maybe even help in the long run, is the one that makes the whole tower topple.  And when the tower topples, you do your best to build it back as fast as you can, then it starts all over again.  Then there are times when you turn your back for just a second, let your guard down, and someone comes along and smacks it down.  But then again, there are those lovely times when you take the piece that looks like certain annihilation, yank it out, and the tower doesn't move.

But I have to say, when it's all said and done, it's my joy and privilege to be the mom I am to the kids I have.  I have a seven year old hero who wakes up in a world every day that promises to be confusing and frightening.  I have four and two year old heroes who join in this twisted game of Jenga, helping rebuild the towers as they fall.

And when you consider all the factors that go into every day of life here, it is more than comforting to know that someone has it all under control, and holds me and the rest of our family as we go about our day.  It is more than comforting to know we are all fearfully and wonderfully made, and that all our quirks and oddities and even our awkwardnesses are part of who we are.  And as we try and fail, try and fail yet again, we are loved.

Whoops moments definitely included.

Thanks be to God!

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