Saturday, August 9, 2008

"Autism on a Bad Day" Poem

“Autism on a Bad Day’

The boiling point, melt down, crying fits,
Fist punches, hair pulling, I’d be lucky to come out clean,
Without the beating red. It sounds dysfunctional, perhaps it is.

A part of the brain that doesn’t work quite right.
A wiring that went wrong, if you will. Doctors,
Researchers, Scientists still can’t explain it, so how can I.

I pray that a melt down happens at home
Or while she’s at school—with the well equipped—
Teachers who can handle it, without the tears.

I lift weights, I need to, because in public, and she melts downs,
I must use all my power—my might, keep my cool, say a quiet
Prayer, while heaving the 40+ pounds of fighting, dead weight.

Her legs in the air, 90-degree angle (no angel), pushing against
My crotch, ripping her clothes off, finger nails digging,
Be lucky if she doesn’t bite—no easy feat being 100 pounds petite.

I just do it! People wonder how, praising me endlessly,
As if autism were my choice. And it scares because I forget
Just how much harder I have it. Ignorance is bliss, don’t forget it!

I look around to see, when I choose to see
A typical child and it catches up with me—and it’s hard.
But I must bring myself back to my world and just do it!

“We can do it” an old tin reproduction of a woman demonstrating
A muscle hangs on my kitchen wall, depicting wartime; my
war too--just different--and a reminder when it gets too tough.


Christina Shaver said...

I can COMPLETELY relate to everything -- from hoping there are no tantrums in public, to the fact that I'm 100 pounds and my son is 50. Half my weight -- and he's only 4! The other day we called 911 because the temper tantrum was so bad, and I feared for the safety of my husband and me. And he's only 4! What are we going to do when he gets older?

Holly Nappi Collins said...

Hi Christina,

That poem was written over 5 years ago when Meghan was about the same age as your son. I have quite a few stories like that one—so I understand what you’re going through—very much so. The interesting thing about your question “what to do when she gets older” is something that I can already tell you through experience: Meghan is now so much bigger than me, she is 5’6 and 170 lbs—solid girl, and she knows that she has “it” over me in a very big way… I recently had no choice to find a residential school for her—an excellent and world renowned school that my town’s school system pays for…I have written a few post about this decision through other older posts (in June and July)—check them out.

Perhaps this is not the road that you will have to travel, but it was for me and for the safety and health of Meghan…by the way, she love her new school and the structure.

Don't hesitate to ask me question and advice—I’ve been through it all!


Christina Shaver said...

I'm going to be very interested in hearing about the residential school over the coming months (if you blog about it).

It was suggested to us that Evan attend one here in Chicago -- also very well respected and affiliated with the University of Chicago. We think he is too young to live somewhere, though they do have a day program. But it is definitely something in the back of our minds.

Holly Nappi Collins said...

Hi Christina,

I will definitely be blogging about the residential school/program on an ongoing basis. Residential school is new to us too but I already knew the school and its reputation. As do you with the school that you had mentioned. I think a great alternative (because the child may be so young) would be to (at least) get him in the day program and then he is “in,” then you can see how it goes and take the school's advice on residential as it comes…