Thursday, January 24, 2013

In the End, It Was the Fruit Loops

In the end, it was the Fruit Loops. More than thirty of them, strung into a necklace. But then again, it wasn’t really the Fruit Loops at all. It was too many days out of routine. Too many snacks that he couldn’t eat. And then, finally, the realization that things haven't really gotten all that much easier. In short, it was the moment he recognized that, despite all the interventions, he still really has a long way to go.

OMG, you guys, I am so tired, I can't even spell "fruit." Sigh.

So, then, he wept.

He wept for how hard it is to remember what he can and can't eat. He wept for his inability to keep it together when things get too loud, or too exciting, or too "fun" around him. He wept because he really is doing the best he knows how, and still it's not enough. He wants to be able to anticipate how any given day will go and how he will react to what the world throws him, to feels a sense of control over himself in any given environment. But, he can't. 

He just can't.

Don’t get me wrong, we’re thrilled with the progress he has made. It took fifteen days into post-Christmas break for Sky to fall apart. That’s approximately 14 days longer than in post-Christmases past. But, to be honest, I’m not sure what our goals should be at this point. Does he learn effectively? Yes. Does he have friends? Yes. Is he able to express his feelings and understand when others express theirs? Generally. But, when he starts to fall apart... 

When he starts to fall apart, he just can't keep it together long enough to put into practice one of the many interventions we've introduced and explored.

Today the OT told me Sky had mastered two of his goals since the last evaluation. What goals? I asked. He can articulate what he needs to do when he gets too over- or under-stimulated, the OT explained. Yes, I said, but he could already do that. The problem is with the implementation. 

And, implementation is everything. 

It’s one thing to know what you should do when class party meets unexpected snack meets anticipation about playing video games later, but it's a whole other thing to be able to separate yourself from the moment and do what needs to be done to get through it. And we're just not there yet.

Worse, I think we all fear that we may never be.

Original image from:


Mama D said...

You speak the deepest fear of any parent with a child who has major struggles ahead. Wishing both you and Sky Godspeed in your quest...

Anonymous said...

I am struck by how much this describes my own -- adult, non-autistic, but over-stressed and under-slept mother -- sense of where I am. When dietary restrictions meet rough day of work meet boundary-testing child meet the need to make dinner while we're all starving, etc., I also lose it and can't pull it back together. (I have been known to give myself a time out, or just go to the other side of the kitchen counter, sit down, and cry.) Has anyone had luck with meditation? I keep meaning to try it -- and two of the teachers at my son's preschool say they've been having great luck with the 3-year-olds meditating each morning, and that it has transformed their behavior throughout the day . . . . (Sigh!)

Mom on the Edge said...

We've done a little with yoga but not enough to know if it's helping. I'm drawn to the meditative aspect of it for Sky (and maybe even Ren). I really believe the dietary restrictions can be the overwhelming factor, the tipping point. Sometimes it all really does seem like too much to orchestrate.