Wednesday, March 28, 2012

IEP Genius

If you ever have to go into an IEP meeting that might be in any way contentious (I probably could have stopped after "IEP meeting" to avoid redundancy), I beg of you, for the sake of your kiddo: Take a page from my husband's genius book - or should I say notebook? - about IEPs. Seriously, this is priceless advice.

See, we had our IEP today, and given the fraudulent and unscrupulous treatment our family has received previously, I went in with low expectations and high preparations. Three hours later, my husband and I emerged, weary, but satisfied, to drive to our separate jobs. I called him from my car.

"I just wanted to say that we did a good job for our boy today," I told him. Then I said something like, "I felt like our concerns and our son's needs were taken seriously today. I felt like the people in the room understand now that they can't mess with us and expect us to tolerate less than our rights. And you handled yourself very well."

And my sweet and wonderful husband laughed in a way that told me he had a story to share.

He asked me if I had noticed his notebook. I had seen it - I noticed he took careful notes, but I didn't read them, as I busily wrote my own notes. "Why?" I asked.

Just before the meeting began, he explained, he had grabbed his pen and scribbled a named in large letters on his pad. Underneath, he wrote a phone number. Then he casually left the writing in plain site for the duration of the marathon. I mean meeting.

The name? On his notebook? The name was of the attorney made famous in these parts over the last four decades for representing people with special needs, and successfully fighting to ensure that private and governmental agencies provide the services to which they are entitled by law. No one has fought harder or to greater avail to ensure compliance with IDEA, ADA, or the Lanternman Act, that this woman. She pretty much calls the district on their shameful acts, makes them straighten up and fly right, then sends them a hefty bill for her hard work, and says, "You're welcome." She says to the world: You will not abuse or neglect the vulnerable and the innocent. I think she probably has a fan club, and I would like to join it.

My husband never threatened legal action with my son's current school or district (yet), though parties withing the district have admitted to actions that would likely justify it; it didn't (yet) seem to be in Rooster's best interests, and right now, what is best for our boy is our top priority. Nothing is off the table - we just want what is right and what is fair, and we are committed to do what we need to for our adorable Rooster.

I am very proud to say my husband speaks quietly and carries a big notebook.

And so can you.

Saturday, March 24, 2012

Listen! Or Don't! For Your Own Protection!

I asked a woman recently to describe a time she thought she dealt well with an interpersonal conflict.

She said that once she had to deal with a special needs parent. She told the parent what needed to happen for the child but the stubborn parent wouldn't listen to her.

Something happened to my ears. Only for a minute, but it was surreal.

Have you ever had this happen?

My ears picked up an entirely different channel. For a minute, I could not hear this woman's story, which had started to demonstrate serious flaws in her reasoning and judgment.

Instead, my ears picked up on a drum circle. And a hazy radio signal that was going in and out of channels.

I refocused. Once again I could hear the interviewee tell me how this unreasonable parent had wanted her child to have "special" treatment and how that isn't fair to the regular kids, and I saw her catch herself and realize to some degree her answer was not a good one. It wasn't linear, coherent, or applicable, and it didn't demonstrate empathy or skills. I was clear as a bell as I watched the woman reframe and ramble back toward a semblance of an answer.

There were other, good conversations with different people that day, and in the days that followed, and never once did my ears do that funny thing again.

I wondered what had happened to me for that minute. Was I going crazy, hallucinating drums and hearing voices? Should I talk to my doctor about my ears?

Then, even more recently, I listened to people talk about a new movie that is coming out, a movie that is supposed to be funny. In fact, my husband's work even has a connection to this film, so I was listening carefully when the autistic jokes ensued. My ears did that crazy business again.

Oh, wait. It isn't drums. Wait! I figured it out. That is my heart. It beats loudly, into my ears, sometimes when my feelings become so big and crash so loudly on the shores of my being that I am too flooded for words. Usually somewhat articulate, when my system short circuits like this, I can't speak or hear momentarily, and I think my automatic response is to try to hear all the little voices inside me -- thus, the static of the untuned radio.

I am a firm believer in non-violence. I hate weapons. Sometimes words are weapons, though, and sometimes they feel like sticks and stones.

This thing my ears do? That is what I call self-defense. Not the kind of self-defense claimed in the news lately, used to justify murdering an innocent child. No, this is the self-defense against verbal attacks against innocent children.

I don't want to fix this thing that happens with my ears. I want to market it. Let's all tune out the words that hurt, and listen instead to our hearts, until we can regroup enough to voice our articulate counter attacks.

Sunday, March 4, 2012

Thinking of Sandra Cisneros Again

Today, I was six years old. We all are sometimes, but today transported me to a very particular summer day at a campground in Virginia in ways that have me once again staring, mystified, at the concentric circles of life and family.

I am at the playground, granted permission by my mother to play unsupervised until lunch time, when I will make my way back down the winding lane to our 40-foot-long air-conditioned "camper" where she is watching television as she cooks. Only the girl playing on the merry-go-round tells me she has the Barbie Dream House (the one with the elevator) that my mother refuses to get for me. The next thing I know, my father is angrily retrieving me from the girl's Jet Stream, dragging me back to our site, where my mother abandoned her mini-television a few hours ago and has locked herself in our station wagon to rock, somewhat-catatonic, back and forth, hugging herself. It seems lunch came and went but I did not, and the men had begun to discuss searching the water, calling the sheriff. She sees me through the window and moans and moans as my father opens the car and pushes me into it, into my mother's rocking.

If she never entirely forgave me, I get it now. I get it in a way I wish I didn't.

The situations are entirely different, and exactly the same. My mother believed in benign neglect, and in the 1970s I had free reign of a large campground from the time I started kindergarten. Today, driving to the park, I explained to my daughter that she had to be where she could see me at all times, because last time at the park I got nervous when she played hide-and-seek with her friends too close to the busy urban streets and the crowded parking lot filled with strangers. I do not so much as leave her in our own front yard unattended.

But when I turned around and found the backseat of my Prius empty today, maybe three minutes after parking and gathering our gear, I knew my mother's heart in the back of that old station wagon. When I forced my brain to accept that, indeed, my child had suddenly vanished, and I was not asleep, having an illogical dream, many thoughts pin-balled through my head all at one time, none too productive:

Had I, when adjusting my parking in the space to get maximum shade, run over my child as she silently slipped from the car? Four times I bent and peered under my vehicle, pointlessly. Had she, as a joke, hidden in the far back of the Prius, under our earthquake blanket? Thrice I flung around the blanket. Did the car next to us grab her just before pulling away? WAS SHE PULLING A STUNT? Did she head for swings, to the left? To the playground, to the right? To the stores, behind us? IF SHE DID I WAS GOING TO PUNISH HER LIKE SHE'D NEVER FORGET. Where was her school's event, the reason that we came to the park? Should I go look for it? But what if she came back? How many minutes had it been already? Why hadn't I agreed to bring my husband and son? Why were there no police nearby? Why were there so many people nearby? Why were there so many tragedies in the news lately? Why hadn't I been paying closer attention? How did she shut the door without my notice? Had I zoned out? Had I .... had I? Lost my mind?

And the whole time, my scream: PEACHES! PEACHES! PEACHES! It wasn't a call, it wasn't a question mark, it was an exclamation each time, unmistakable terror tinging the edges. It was my mother, rocking.

After at least five minutes, a pink blob comes into focus, quickly cresting the hill toward the parking lot, and I become certain over slow, drawn out moments you could count on your fingers that a little girl needs one tremendous, gigantic, enormous punishment for torturing me, for abandoning me in a station wagon, borderline catatonic.

She is so sorry, so sorry, so very sorry, when she sees my face. She had followed friends to play, she cries, only to realize she'd gone without me when another classmate arrived and announced, "There is a mommy in the parking lot yelling PEACHES, PEACHES!"

She sits in the grass where I have crumpled and begs me to be happy again, to take her home, to forgive her. I am fury, I am fear, I am forgiveness, and as much as I want to punish and shake her til her teeth rattle, I simply talk, and kiss her, and tell her she has to stay where she can see me, where she can see me, where she can see me, like I told her, like I told her, like I told her. I tell her most of the people in the world are good, but that I was so scared, so scared, that someone not good had taken her, or that she had walked behind a driver who could not see her little body. Her little body.

I do not tell her I had done the same thing at almost her exact same age. I do not tell her that all I had wanted today was to go to this typical school event and do our best to fit in some and connect a little and get some volunteer hours and not stick out overmuch for once. I do not tell her that I know exactly how she feels -- sorry, guilty, responsible, scared, vulnerable -- that I know exactly how my mother felt -- sorry, guilty, responsible, scared, vulnerable.

We dust ourselves off slowly, and walk back down the hill, around the corner, to raise money for her charter school, running laps along with everyone else, but not really.

This post, this day, these experiences and feelings, had nothing to do with autism, only that is never really true.