One of our family’s favorite board games is SORRY! We play round after round on family game nights.

One thing no one ever likes is getting “Sorry’ed” right back to their start. One or all of us have been known to whine and groan over the inevitable gleeful “SORRY!”

No one likes being told to go back to start.

Now, that’s what we have to do.

Almost six years ago Molly received her “official” diagnosis of Autism (as well as Russell-Silver Syndrome). We foolishly felt relief at the diagnosis thinking now we could get help. We didn’t know what the road ahead of us held.

Now we’re drowning.

Since Molly is so high-functioning (possibly Asperger’s?), that our concerns are often set aside by others (i.e. the school) until a specific behavior presents itself. Every year we go in and try to be prepared for everything, but one of a few things happens.

1. She starts off so off-kilter by the change of schedule/new event that any quirk seems mild by comparison
2. Her behavior is so beautifully spot on and normal that any deviation is like a sudden attack on everything we thought we knew (or rather, they thought they knew)
3. A new behavior develops that not even we suspected

This year we have reached a breaking point. The school has set her on a new behavior model because she degraded so tremendously after Christmas break. She isn’t listening to her teachers, she’s refusing to do anything, and she is avoiding tests like the plague (w/ standardized testing in a few weeks, this is not good, even w/ IEP accommodations).

The development of a possible learning disability on top, plus lack of focus, and weird tics and behaviors at home had Erik and I at our wits end.

We called the doc and got her in for her annual physical and set about finding out the next step.

Our pediatricians best advice?

SORRY! GO BACK TO START!!

So we must return to the geneticist that gave us our initial diagnoses. We’ll need to use him to unravel the confusion we’re currently in. There may be treatment for ADHD, we may see about getting her into a local ABA treatment, we aren’t sure what’s going to happen, but we have to go back to the beginning.

Again.

It’s a never ending process of hurry up and wait.

Mostly, Erik and I need to find local support. We find ourselves at such a loss so much, that we’re grasping at straws that aren’t there. We don’t know how to handle things, and that’s something that’s really hard for both of us to admit.

Now we wait until May to meet with Dr. E again, six years after our last appointment. Hopefully he’s able to help not just her, but us, figure out how to go forward now.

All we want is for her to be happy.

At peace.

Peace is so hard to come by.

*~*

Written for Things I can’t Say’s Pour Your Heart Out