Saturday, January 22, 2011

We All Have Special Needs

Believe it or not, the parent association meetings for my son's school take place at 6 PM on Friday nights.
Our school board member could not believe it either, but he came anyway, dined on cheap pizza and iced tea at card tables in the auditorium, and pitched his plans for a new span middle school in the district.
A pretty good-sized crowd turned out, and with my oldest in first grade, I expected to be a little bored as secretary taking notes about the middle school.

Then the Q and A started. The Q and A that made it the most memorable meeting I think I have ever attended...
Are there special day classes at this new school? Because my son has special needs.
Are kids fully included? Because my daughter has autism.
Is it going to remain open enrollment? Even for kids who have IEPs? Can you promise?

I have no idea what came over me but the meeting changed for me very suddenly. I went there to take notes and get home as early as I could to write a paper due Monday for a class I'm taking; I had wanted to fly under the radar quick and painlessly. But as I realized how many people in that room had kids with special needs, my heart started racing. I zoned out of their Q and A for a bit for some internal Q of my own.

She also has a kid in the inclusion program? You mean I'm not alone in that here, like I tend to assume? You mean there as so many of us? Why so many? All autism, or other diagnoses too? Can you hear how scared they are about the school in our district? We are, I mean? Why is it so hard? Are the NT families tuning out? Do they get it? Why can't we do more for kids, all kids? Why are the numbers soaring? Why are the dollars disappearing? What can we do? How long will it take?
I lost the thread of the room and I shot my hand in the air. I had no plan. I had to listen to what I said just like everyone else did because I didn't know where I was going.
I spoke louder than I planned, and slower than I am known for.

"As the parent of a child with special needs, I get sick of being made so other all the time. And as an educator, too, I just want to say that it is past time that we all realized that all people have special needs. And that we all benefit when schools address all those needs to the best of their ability. Not other schools or other rooms in the school, not somewhere else, but everywhere, fully included. And there just are not enough options for meeting kids needs, not enough schools doing what needs to be done to help all learners, and I can't understand why not."

The school board member considers this new middle school his pet project, the thing he says he commits to making happen, hell or high water, during his term, through sheer determination to serve the needs of the constituents, and that is why he spoke to us on his third late work evening of the week, tired and dogged. But that focus shifted when I spoke, and the night seemed to crack open, and a new connectivity hatched as a result. I have no perspective on how others saw the night. But what happened next, for me, sent me reeling. The school board member engaged me. He agreed. He spoke with passion. He believes in inclusion, he cares about providing services, and he was willing to talk about this important concern instead of his middle school for a portion of the night.

At the end of the evening, I walked over to a mother who has a 10-year-old with autism. We clung to each other's stories like the only two English speakers who find each other in the whole of Asia after trying in vain to pick up either Mandarin or Cantonese. As we talked, the assistant to the school board member approached us cautiously. Young and beautiful and clearly career minded, she had put together the Powerpoint and served as an able sidekick to the school board member, but coming into the circle to chat she looked like a nervous deer. She stumbled through explaining that her sister recently died, leaving behind a nonverbal 8-year-old. Together, she and her mom needed to figure out what to do for this child to get him the services he needs. Business cards and iPhones and hugs circulated rapidly as we exchanged information before she left with the school board member.

The other mom and I walked to her car, then drove to my car, then said goodnight four times before I finally drove home. We talked about our dreams for our sons, our journeys with autism, how much we would love to start an inclusion model charter in the district, how we might involve the guy from the school board because he seemed to get it and want to help.

In the car, my husband called, wondering why on earth a parent association meeting would last past 9 on a weekend night. I wanted to tell him about the meeting. He asked what happened? What was it about? I tried to find the words to tell him. But what was it about? About a middle school. About inclusion. About community. About dreams. About possibilities. About autism. About parenting. About questions. About healthy food in the cafeteria. About government. About reform. About money, or lack of money. About local control. About children.

As secretary, I can tell you what HAPPENED at the meeting, but I guess what the meeting was about is determined by perspective --- the hat you wear, the cards in your hand, the agenda you care about.
But that makes sense. Because. we. all. have. special. needs.

Sunday, January 16, 2011

An Okay Trip Down Aisle Three

We here at Casa del Rooster are doing, er, um -- okay -- these days, in case you visit this blog regularly and have been wondering.
You know "okay"?
Okay, as in, the Rooster's Mama has never seen a half full glass?
Okay, as in, shhhh, never tempt a jinx.
Okay, as in a song a dear friend gave to me:

I just wanna be OK, be OK, be OK today.

Yeah, enough said about that. But on a recent okay day, I found myself rushing through the grocery store, focused on my list mantra: milk, chicken, fruit, lunch box stuff... milk, chicken, fruit, lunch box stuff... milk...

Then a lady stepped in front of me to get some cheese.
I think: I know her, I know her. From where? How do I know her? Who is she?
She moves to the next aisle but I stand rooted. It's important. I can see her in my mind, and she has something to do with the Rooster. I pass right by the chicken I need and slowly head to the aisle I think she chose. Yes, there she is again, with her list, her white hair. I close my eyes for a moment. Yes, I see her now. It has been, what, three years? Four years? Am I slow to recall her identity because my aging mind forgets more and more as I approach 40, or because my defiant heart didn't want to budge from its perch in an okay day to visit a painful memory?

She is one of the doctors from our old pediatrics office. Not our own former doctor, the young Dr. S, but his older partner. The one everyone told us balanced things out -- you get the young Dr. S who has small kids, a big heart, infinite energy, and the latest greatest knowledge, and you get his older partner, doctor J, who has a grown child and all the experience you will ever need.

Seeing this doctor pick out apples should not be enough to knock me off my okay perch. And it's not, really, overall. I will still ring up my groceries with the adorable guy who always has something nice to say, and I will still smile at all the grocery jokes they make at TJ's. I will still go home and enjoy making my kids a healthy snack from the bounty I just bought. I will still watch my son and marvel at his recent improvements, his growth, his hard work. I will still have an okay day even when my kids skirmish a bit, and I will still be okay, be okay, be okay with my kids snuggled up on either side of me for a bedtime story.

But for a moment in the grocery store, fragility seizes upon me in the produce aisle. The memory of fear, isolation, loneliness, fatigue, failure, and desperation is not okay. A missed diagnosis, unreliable medical care, insensitive remarks, arrogance, disregard for developmental knowledge in pediatrics, wasted time, needless tests, horrible referrals, bad attitudes, selfishness... who knew how barely below the okay surface these old injuries could live?

I circle back to where I started to get that chicken on my list. I do not speak to the doctor, and she has no idea who I am or why for a moment I had to close my eyes and hold on to my cart. And that is okay with me. I only hope that she and her partner both remembered what I said when I quit them, three or four long years ago now: The next time you meet a child like mine, a child with autism, I expect you to do right by that child, by that family. I expect you to listen to them, hear them. I expect you to diagnose them. I expect you to help them. I expect you to provide resources to them. Because that is your job!

My favorite cashier asks, "Did you find everything you need?"

I think so. Eventually.

Thursday, January 13, 2011


I have a confession.
I have been holding out on you.
Something happened.
And I didn't want to tell you.
Because it's a good thing.
And I do. not. trust. good. things.
I do not speak lightly of good things.
But. Um.
Some people have been trying to explain to me lately that the world does not work the way I think it does. And that maybe, possibly, people SHOULD say the good things.
Er. I don't know. I'm open, but I'm uncertain.
So I want to give it a try. I want to tell you a good thing.
I beg of you not to jinx me. Not to hate me for the good. Not to tell on us. Not to let us be punished for a good thing.
Okay, maybe if I tell you this good thing, and the good thing stays, I will think about considering that maybe some of the people who want me to be more, uh, hopeful, might possibly be on to something. We will have to wait and see.

A few months ago.
We stopped Melatonin.
My children, almost 7 and almost 5, just sleep at night now, like they are supposed to, most nights of the week, both unmedicated.
This is a very vulnerable moment for me.
Please, don't even comment.
Let's just wait while I hold my breath and see which of us is right about how the world works.
And let's see how long it takes me develop insomnia.
Good night.