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.

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.

Shhhhh.

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.

So.
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.
Ahem.
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.

What's Behind Door Number 3?

A letter came in the mail yesterday that ranks up their with audit notices, jury summonses, and credit card bills all rolled into one. If you look at that letter now, you can see all the signs that it made its reader crazy -- the paper has clench marks, some tear stains, maybe a drop or two of my blood...

"With a heavy heart" the principal wrote that my boy's first grade teacher will not return after winter vacation. I should say, my boy's SECOND first grade teacher. His first teacher lasted about a month before she left for a job at a better school, where her kids attend. They did not replace the first teacher, they just took the whole class and added to another. In one fell swoop my kiddo lost the experienced and highly regarded teacher I'd begged the universe for, the classroom I'd helped him transition into, and the small class size. He landed in a different room on a different floor with an inexperienced young thing trying to handle 28 first graders, including some who had made life nightmarish for Roo in kindergarten. Now, she's gone too, and I called the principal urgently requesting contact with the third string before school resumes in what seems like a year and a half (or on January 10) after this lengthy winter break that helps nothing but the pathetic budget.

So, tomorrow my husband will take Rooster by the classroom to meet New Teacher #3. We worked for several hours today composing a letter to #3 about our expectations. It goes something like this:

Welcome, please try to last longer than Lee Press on Nails.
Our boy has autism, and we know more about him than you do.
We are sick of getting the run around.
We pay an ed therapist a lot of money because she knows what she is doing, and none of the teachers here seem to. We've brought her in for meetings with the other revolving cast of characters and explained how her strategies help our guy with academics, especially math. Use them. Like, on Monday, when you start. Use. The. Strategies. They aren't rocket science. They are simple and they work and you will use them.
The IEP says you need to help out. Read it. Help out. Do your job.
We will be in touch. Lots and lots of in touch. In your mail box. In your email. On your phone. In the homework folder. Often. One of us works right across the street, and can run fast, find you in heartbeat. Want us to go away? Gladly. Then stick around, use the strategies, read the IEP, help out, and do your job.
Our boy has autism, not the plague. He's sweet, cute, and he works his butt off.
Sincerely,
Rooster's parents, the Bears

Does anyone have $46,000 I can borrow? Um, annually? I heard of the perfect private school for my boy, only it has one problem. Or make that 46,000 problems. But the public school he's in now has ten times that many, a half million problems, all for "free."

Take That!

Okay, pardon my journalism major while I paraphrase this post, because I'm old and my memory has holes in it the size of our school district's deficit. This gives you the gist.

My kids sat in the playroom at a small table making crafts. Each one designed a colorful creature using materials from a kit sent by their adoring and generous grandma. I eavesdropped from the kitchen.

Peaches: I'm going to name this guy autism. He's a bad guy!
Rooster: Yeah, autism is a bad guy.
Peaches: Let's punch him in the nose!
Rooster: (Laughing) Yeah, let's beat up autism!
Peaches: Kick him in the face!

Where on earth do they get this stuff?

I interject from the kitchen: Kids, you know people who have autism are not bad, right?

Peaches: We KNOW that. Rooster has autism. But autism is a bad guy!
Rooster: We're going to kick him in the face.
Me: Well, you don't have to like autism. But I don't hate autism. Because I know a lot of people with autism and I really like them.
Peaches: Well, but autism is not good. I mean, the people are good, but not the autism.
Me: Maybe. But punching something you don't like doesn't seem like a good idea. I don't like "beating up" talk. I don't think you should kick people in the face!
Rooster: It's funny!

My husband gets in on the conversation: You know, kids, autism means that your brain works differently from how most people think. That's all.
Peaches: This (holds up creature) is autism, daddy! He's a bad guy so we're going to make another guy who punches him.
Husband: Do you know any people who have autism?
Peaches: Yes! Rooster does. Come on, Rooster, let's play with these guys!
Rooster: Yeah! I want to beat up autism! Kick him in the face!

Priceless

After lunch at Z Pizza yesterday, we passed right by a shoe store. Since apparently someone has been plying Peaches with Miracle Grow, I thought we should duck in and grab her a new pair of kicks that fit. About a month ago, Roo got new shoes, so I had no plans to get him any yesterday. Of course, then he spied the light up shoes with skulls on them, and his sister says, "You HAVE to get those, Rooster, they are so much cooler than your OLD shoes." Thanks, Peach. Suffice it to say, my boy lost his marbles that I would not give in and buy him an extra pair of $50 shoes that he does not need and I find aesthetically abysmal. He cried all the way home and told me about 600 times that he HATES the OLD (more expensive, bought just one month ago, light up, cute) shoes because they stink and he would throw them in the garbage.

I did not back down one centimeter and gave him the same reminders all 600 times. (Not looking for opinions on that one, just saying.) When he threw his shoes in the trash, I made him take them out, apologize, and listen to my speech about appreciation, money, etc...

Cut to this evening. Although I am Jewish and my kids and I light candles, we also have a Hanukah bush and will open presents tomorrow morning in our play room. (Guilt, guilt, guilt.) So I suggested maybe we already have too much stuff and maybe we should do a quick sort and organize. Peach says, "What do we do to organize?" So I suggest we look through our stuff and decide what to keep, what to throw out, and what to give to other people who might need or want the stuff we aren't using.

Rooster appeared engaged in playing with toys. Without missing a beat, though, he looks me right in the eye and says very calmly, "I have some stinky shoes I want to give somebody who wants them. They can HAVE them."

I don't know if that READS funny at all, if you can picture the scene or you had to be there, but I can tell you it took me 10 minutes to breathe again because I laughed so hard it was silent, and the kids looked worried I might keel over.

So, autism. Maybe it causes some perseveration and tantrums here at casa del Rooster. Maybe it gives me worries that keep me up at night. But I think we spit in its eye tonight. Go, Rooster. Go wit, go conversation, go eye contact, go FUNNY, go joint attention, go Rooster, go. Happy New Year!

Pamper Your Chef

Okay, today is the day for you to do some holiday shopping.

http://elizabethaquino.blogspot.com/2010/12/pampered-chef-giveaway.html

If you click the link above, you will see my friend Elizabeth has exciting information about how Pampered Chef shopping can benefit one of the best community building resources out there for families raising special kids, Hopeful Parents. But hurry! Time is almost up!

By the way, I am partial to the stoneware, myself...

Ho ho ho!