Dragons Transformed

Today at Support for Special Needs:

Excerpt: 

Sometimes I don't have words for the things that keep me up at night, the things that keep so many special needs parents awake, staring at the ceiling. Institutions that don't adequately value the amazing human beings they've been entrusted with. Voices from the outside tearing us down, in the guise of civic concern or advocacy or just plain ugliness. And most of all that wordless thing waiting in the future, the one that scares us most of all because we can't see it, we can't even imagine it, and when we ponder it, we are reminded of our own aging frailties and a clock that feels like it's running out far, far too fast. I don't always know what to say about these lurking phantoms and monsters. I'm struggling with them myself.

Her World, Her Words

Today at Support for Special Needs:

But Schuyler also does a lot of free writing, creating text files on her iPad both for homework assignments and just her thoughts as they come to her. And it's here where the results of her increased freedom of expression and communication suddenly become clear. 

It's not perfect; her grammar is touch and go at best, but even then, when she fumbles the language, she doesn't mangle it so much as twist it into something different. Her language can be broken, but also beautiful and free. A little like Schuyler, come to think of it.

Tooth and Claw

Today at Support for Special Needs:

Overall, it wasn't a bad IEP meeting. Most of the team was very responsive to the philosophical shift we asked for, and they seem eager to find a way to engage with Schuyler in a more comprehensive way. It did feel a little like IEP meetings of old, where we fought tooth and claw for what we felt our daughter needed. It was emotionally exhausting, like being attacked by vampires and bled dry,and we both felt like we'd resorted to becoming Those Parents for the first time in years. Not a great feeling, but a necessary one, I guess.

Schuyler's poem, recopied by memory as we took the photo she wanted for her blog post.

GUEST POST: A Poem by Schuyler

(I was alone with no ones there!)

The grass looks green and the sky looks blue but everything else looks gray
The pine tree looks monsters and the sea looks horses in the hill
The desert looks brown and it feel tiny and alone with no one there
The mountains looks old and wise likes wizards with their masters
I feel tiny and alone with no one there in the dark cave.
I feel super tiny in the deep way of the ocean.

-- Schuyler Rummel-Hudson

Photo concept by Schuyler

The Unbroken

There is a brokenness
Out of which comes the unbroken,
A shatteredness out
Of which blooms the unshatterable,
There is a sorrow
Beyond all grief which leads to joy
And a fragility
Out of whose depths emerges strength.
There is a hollow space
Too vast for words
Through which we pass with each loss,
Out of darkness
We are sanctioned into being.
There is a cry deeper than all sound
Whose serrated edges cut the heart
As we break open
To the place inside which is unbreakable
And whole, While learning to sing.

- Rashani Réa (1991)