Tuesday, February 23, 2010


Just came home from ANOTHER pre-eval meeting to update Rojo's IEP. Because we are now having him evaluated - educationally- for autism spectrum disorder, we've had to start over from scratch. Just calling and saying, "Hey, could you add one more thing to the eval?" doesn't fly. Nope. You have to meet all over again, say everything you've already said, stammer in all the same places, look around the table hopelessly for someone to jump in and rescue you, then go home and fall apart. All. Over. Again.

Today I feel like I know nothing, have no answers, have nothing but a bleak future to look forward to, and really, have made one poor decision after another. After another. After another.

But that's just today.

And that's the nature of bureaucracy. And the nature of being a small cog in a very large wheel. And the nature of parenting in general, maybe. I don't know.

I don't know where Rojo will go to high school. I don't know what Rojo will do or where he'll do it after high school. I don't know what will happen to Rojo, where he'll live and what he'll need as an adult.

I don't know.

And that's the difference between special ed parents, we know that we don't know. Nobody knows, but we know we don't know.

And that's a powerful knowing.

* Photo of Saraswati, goddess of knowledge, from www. z.about.com/hinduism


Me said...

You are right. You never know. However, doesn't he surprise you all the time? It might be the greatest story ever.

Lola said...

What we do know is how GREAT ROJO IS and always will BE!!!! kinda like his mom xo

Tanya @ TeenAutism said...

"We know that we don't know" - yes, that's it exactly. We're on the same wavelength again. Just five minutes ago, I was working on a post about my uncertainties about Nigel's future. And then I come here and read your post. Oh, how I know.

Anonymous said...

And tolerating the not-knowing, just sitting with it and accepting it, is one of the hardest things we do.

It's the next step, I think, of the grief process. After we grieve all our old dreams for our children, after we rage, and deny, and crawl toward acceptance of the idea that they won't follow that picture-perfect plan we had for them before they were born, we still have to learn to tolerate the idea that we can't make a new plan, either. That we just have to sit with them, and watch, and love, and accept, and witness them forging their own way on a path we don't know.

Not easy, to say the least. But the good news is that they can do it, and so can we, and the result will be beautiful.

Lori said...

The beauty of a blah day is that good days that come after seem like gifts. May you receive a lovely gift today, and may it last all week.

None of us know. We only think we do.

Suzy said...

But we DO know, that he will be fine. He will suprise us all.

Love you


Anonymous said...

We don't know over here either.
My father's words come back to me, "Just do the best you can." That's it. You're doing just fine.

Wanda said...

I have no words of wisdom or even comfort. Just Love. (Ditto blackknightsbrood.)

Deb Shucka said...

What you do know, and knew so much more clearly before the bureaucrats got their teeth in you, is that your boy is a pure soul whose work here won't be boxed. And you are the perfect parent for that child.

fullsoulahead.com said...

I know Rojo is love. And like attracts like. And he is okay. And so are you.

Jerri said...

Knowing that you don't know is a gift.

Lord knows, I'd like to be certain of just one thing. Any one thing would do. But the truth is, when we're certain we're right, we're always wrong because nothing is certain.

Well, death and taxes, but those are too depressing to mention.

All will be well, my friend. All will be well.

drama mama said...

Well. You don't know. And yet you do.

'Cause, frankly, Rojo is on his own fabulous trajectory.


kario said...

My friend. I love you. I love that you don't know. I love that, in the face of not knowing, you allow yourself to fall apart for a bit and then move on into that dark unknown space.

I am encouraged by your bravery and one-foot-in-front-of-the-other persistence. It makes me proud to know you.

Anonymous said...

The difference being that "we know that we don't know" is something most people don't get. Well meaning people, with typical children, say to me "well, no one really knows what their kids will do, how they will turn out" but our not knowing is so different.

I get this and we're a bit behind you on the road.