Pie for breakfast

Here we are, coming up on the annual meeting to update Speedy’s Individualized Education Plan (IEP).  This is the meeting where the school district sits with us and 10 other people to decide how they can support our child during the course of the school year.  I’ve written about this before, but with each new year comes new needs.  With each new year (and really we do this twice a year, one for each of the young ones) comes our personal growth and changes to how we advocate for the educational needs of our children. With each new year I find myself hoping I’ll become better…faster…stronger.

Come to think of it, I could use a little of that for this hip and knee pain.  But since I’m not a television character from the 80’s, I’ll have to recuperate a little differently.

Anyway, the Meeting.  It rather feels like this big looming thing.  Knowing that it’s coming causes a certain amount of tension, even though the actual meeting itself typically goes pretty well.  [I happen to be a really strong advocate, and I know that not everyone feels they have a voice in these meetings.  I know how difficult it can be, and it may help to go in with someone by your side.  There are several organizations in our community, and likely in yours as well, who will attend meetings with you to support your voice.]

I suspect that a certain amount of this tension is due to the fact that we read the progress reports during the week leading up to the meeting, and this can be really alarming and painful.
“With moderate cuing to stay on task, he copied an 8 word sentence in 5 minutes, 15 seconds.  This is longer than it would take the average 2nd grader to copy a sentence.”

The fact is, that’s really hard to read.  On the upside, it’s a slight improvement from last year when he couldn’t attend to the task for more than a minute or two.

Another portion of this report stated that his 1:1 aide can now get him to eat 50-75% of his lunch (another improvement, but still gut-wrenching).  Eating has been a major stressor in this household, between Speedy’s medication-related difficulties and his younger brother’s seemingly age-related loathing for all things not nugget shaped.
Speedy’s physician has us giving him basically as many calories as we can get into him during the course of every day, and taking medication breaks on the weekends so that at the very least by Sunday he’s ravenous.

The thing is, these reports aren’t particularly surprising. We live with the boy, we know that when he says he has to go to the bathroom, he will spend five minutes making faces in the mirror or reading a magazine if he spots one.  Sometimes he’s just standing there talking to himself, having forgotten why he’s there.  These are things which we approach gently with him because he simply cannot help it.  This is his neurology, and although it’s been incredibly emotional for him and for us, we are working out how to support him with love, kindness, and a LOT of patience.

Ah, patience.  That’s easier talked about than actually used, isn’t it now?  Most of the time I feel like this:

19577238_10213766732784827_2499527715107381089_o
My eternally patient husband, who may have actually just been rubbing his face in this photo but I think it’s a great representation of the “facepalm” that we find ourselves doing so often

So, what do we do?  How do we mitigate the barrage of stressors from the kids, from the school district, from everything that has become our world?

Well, that’s tricky to answer.  There is no one answer for you, loves.  My advice is to find the thing you love doing, and go do it.  For me it can sometimes be as simple as stepping outside and standing in the sunshine. I close my eyes and lift my face to the sky and breath.  Some days it’s making my car turn towards the gym rather than home.

Okay.

I had written this really amazing thing, images of happy women practicing yoga with the sunrise in the background while they smile blissfully at the majesty of it all.

The reality is that I’m standing in my kitchen, beyond stressed at 6:30 in the morning. You see, after having written this amazing piece about how to handle the stress and about how you need to put the oxygen mask on yourself first, I fought with Speedy about slamming doors and interrupting people.

You win some, you lose some.

Now, if you will excuse me, I have a big decision to make about what I should have for breakfast: apple pie or lemon meringue?

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