I Just Wanna Be OK...

I still hold my breath when issuing an imperative.

"Son," I said tonight, "go put your pajamas on, now." {wince}

You could feel my held breath during the beat. I do not ever take it for granted when he sweetly replies, like he did tonight, "OK."

I still get my share of resistance to things. What mom doesn't?! But it is a gift, a treasure, a milestone, a minor miracle, when my son, after practicing the word for more than THREE YEARS, responds to a direction by saying, "OK."

I turn away so I can enjoy a private smile. Yes, those two little letters mean a lot to me. But more than that? It's what he doesn't say. Those other two letters. Well, actually, if anyone could spell "NO" with more than two letters, my son could. Still can. But now it's almost rare to get, "NOOOOOOOOOOOOOOOOOOOOOOOOOOO!" I do not miss those days one bit.

If you are a parent or teacher or loved one of a child who has autism and "no" is the biggest part of their limited vocabulary, please do not give up hope. Please know that I almost did, and I would have been wrong if I'd accepted that a tirading, toy throwing, temper tantrum-ing single world vocabulary was the extent of my son's future interactions.

We have practiced the word, "OK" with him, modeled it for him, rehearsed, begged, reminded, scripted, and bribed it out of him. We had ABA for every single week day for two years. We have books about it. We praise the daylights out of it. Not because we want our son to be something he isn't, not because we don't love and adore and accept him, not because we wanted to spend our time with him issuing commands and forcing compliance, but because he always seemed so furious in his world of endless NOs. He seemed to say no to ease, to peace, to comfort, to being. He has come so far, through sensory work, through OT and PT and school and "helpers" and... love. He is still a fighter in the best sense of the word, but he has put down his gloves a bit, and he has made some room for ease, peace, comfort, being.

Today he watched Lilo and Stitch, and he started laughing his heart out. Our friend Decy said, "He sounds so happy." I felt my eyes widen. To hear that said about MY boy! My boy?! I confess, I pretended I hadn't completely heard her. I said, "What did you say?" I wanted more. She said it again. "He sounds so happy." This is not a sudden thing. Our Rooster has been gradually doing better, emotionally, step by tiny step, but it still thrills me to hear anything so radically different from back when I started writing this blog in 2008. My. Boy. Sounds. So. Happy.

If you can't imagine hearing that about your child, hang in there. I am rooting for you both. Be patient. Do what you think is best. Love. Take whatever tiny baby steps make your family feel comfortable. Or whatever giant steps. Just don't give up hope. OK? OK.

Can You Hear Me Now?

The other night, after an endless day, Peaches tried to stretch out bedtime. At least, I hope it was a ploy.

"Um, mama? You know how you said today I should just listen to the little voice inside me that tells me the right thing to do? Well, I don't hear that. I think sometimes my little voice tells me to make bad choices."

Glad it was dark, I bit my lip. Then, I tried this, "Peach, if you listen carefully, I know you will hear the other voice. It's inside you telling you the right thing to do. Such a sweet girl like you can do it, I know you can, if you just listen."

I pause for a long moment and then turn to go.

"Nope," she says. "Can't hear it."

Friends, I am beginning to get the impression that child needs her own blog all to herself. Alas.

Um, Should I Really Tell You This?

Lately, I have some dramas or desires or plans that do not involve my children or autism.

Do you have any idea how significant that seems to me?

Whether it makes me feel guilty or giddy, selfish or lucky, or like it's a sign of progress or coming unglued, I marvel nonetheless.

You see, it's like saying, "Sometimes I forget my name." No, not exactly. Maybe it's like saying, "For a minute I thought it was a decade ago." No, not that either. Maybe it's like breathing for the first time in a record period of time. No, maybe there is just no way to say it but to say this:

It is really WEIRD when lately I sometimes find the energy in my life consumed by things other than raising my children, and how autism fits into that picture. It kind of has me all inarticulate and gaping. I am trying to figure out what to make of it.

Oh, there is PLENTY about autism keeping us busy. I mean, c'mon, it's a month til IEP. We're knee deep in decisions, debates, choices, therapies, social skills, birthdays, and facing some medical stuff for the boy Rooster that I don't feel like writing about just yet.

But sometimes there is room to think about my career. My marriage. Aging. Maybe getting the bathroom finally painted. Considering a tad bit of travel, to see family. Some of this stuff is also hard, and some of this stuff is nice. It all feels unfamiliar, and like the life of someone else.

To be honest, I am scared to publish this post.
Scared.

Awareness is So Money

As the calendar turns to the month of autism awareness, it also turns to tax time in an era of budget woes and governmental quagmire.

I feel like I’m in a Tilt-a-Whirl. All around me, autism awareness advocates struggle valiantly to promote inclusivity, empathy, awareness, community. And all around me, bureaucrats fight over the failing economy, especially about who should pay for it, which is almost always someone “else.” People are in their own frenzy of fears, and every important issue in our country – from health care to education to wars to taxes -- seems rife with divisiveness and antagonism. Dizzy, I have held onto the nearest wall, immobilized, waiting for my equilibrium, but now I have something to say. It might be a jumble, it might mix some metaphors and take broad strokes and combine disparate topics, but amid the chaos, there is a simple point: It’s time for us to take care of our country.

And you know what? Taking care of autism IS part of taking care of our country.

Let’s say you don’t care a bit about autism, and even less still about inclusivity, empathy, awareness or community. Fine. Let’s say instead you care only about money, capitalism, and American corporate success. Fine, fair enough. Here is a concept I think you will understand, pertaining to education, health care, and disability services:

You can pay big now, or you can pay huge later.

You can pay high costs for services for children, or astronomical costs for lifetime services.

Or forget about special needs for a second. You can invest in schools, regardless of whether you have kids or even like them, or you can pour much bigger sums of money into such sinkholes as prisons. Don’t like property taxes going to the public schools you don’t use? Would you prefer them locking up the uneducated masses that you fail to rehabilitate? Would you prefer increased crime and drug use? And when I say pay now or pay more later, the later is not a generation away… the later is getting sooner and sooner as the size of our neglect grows and our past transgressions come due presently.

Hey, if you don’t know or love someone with a developmental disability, I get why you might resent “your tax dollars” going to serve “them.” I don’t need to try to reach your heart, really, because I can talk to you where you live, in your wallet. I want you to think about the twelve-year-old college student well on track to win some of the world’s highest prizes for his genius in math and his contributions to society’s understanding of advanced physics theories you and I are not likely to grasp. Have you seen the press coverage of this boy? I want you to imagine his parents had not had access to any services when, at age 2, that child received a diagnosis of autism. They thought he might never communicate and participate in the world around him. Can you please calculate the difference between what that child will likely now contribute to society, and what he would have cost “American tax payers” had he had to live in an institution? I’m talking dollars and sense here, people, and no, that is not a typo. What about the comparison between what that boy might contribute to society and what you and I might have to offer? Is he more or less worthy than you are? Is he more or less an “investment” in America’s future than I am? If you can quantify those things, I hope you will explain how. Well, for my money, it doesn't work like that, not one bit. But, for anyone out there who simply has to measure things, I will try to make things add up.
Simply put, people invested in that boy when he needed it, and now, his future tax contributions will likely contribute to taking care of us when we are the vulnerable ones. I wonder how he and his generation (currently 1 out of about 150 of which have autism) will feel about taking care of the elderly and infirm?

It’s autism awareness month. I wear blue not because Autism Speaks necessarily speaks for me or my family, or because I’ve ever been much of a joiner, but simply because I feel less lonely when I, as an autism parent, connect with community. But you don’t have to be interested in being part of my community to realize that our country must support education, health care, and services for all of our most vulnerable members, including those with disabilities. You just have to understand basic principles that tell us not to be penny-wise and pound-foolish.

That isn’t really how I roll, to be honest -- I think you should care about protecting vulnerable citizens not because they might or might not turn out to disprove Einstein’s theories, but because they are human beings, and we are all one big human family. But if you have to make it about money, then maybe that’s just your own vulnerable special need, and I’m willing to look past it to help you learn, because we all need and deserve some help and inclusion in this life.

One Note

I have only one real point today:

I love my kids.

I love the one with autism and the one without.

I love the one who learns easily and the one who has to work.

I love my loud, messy, impulsive kids.

I love my sweet, affectionate, creative kids.

I love my unusual, surprising, confusing, mysterious kids.

I love my kids when they are popular and when they are not.

I love them whether or not you do, or anyone else does.

I love them the same, though differently. Equal, immeasurably.

I love them when I am angry and when I am joyful.

That is worthy of a blog post because.

Fiercely, gently, hugely, and to the best of my ability, with ease and without, 25 hours a day,

I love my kids.

It's My Party and I'll Blog...

I started this blog three years ago.

Then...
I was scared.
I felt hopeless.
I needed to unload, be heard, connect, find comfort, hear from others, cry. I cried every way you can, and never seemed to run dry.
My son seemed to struggle every waking minute, and sometimes while he slept, to regulate, cooperate, interact, communicate, find his balance, be.
I wrote to seek, I wrote to salve, I wrote to save.
I had no life.
I did not have a clue.

Now...
I worry. But less. I worry like I did 8 years ago, or 10, but not like three years ago, when worry had me by the throat.
I hope. A little. Not brazenly. I have not forgotten the deities who remain out to get me, but we maintain a wary settlement for now.
My son regulates, cooperates, interacts, communicates, and finds his balance sometimes, and I accept the process, and his autism, more and more when he struggles.
I write for pleasure and for work, to help and to heal, sometimes for myself and sometimes for others, when time permits.
Our lives feel full.
I am getting a clue.

Yesterday I took a walk with a dear friend. We live a few streets apart and try to find at least a day or two a week to hit the neighborhood bike path for exercise and friendship. We talk about work and family. I asked about her husband's work. "That reminds me," she said. "He has a co-worker, a woman with a four-year-old who got an autism diagnosis last week" I told her, "Have her call me. I'll do anything I can to help." It is my turn, after all, and I have learned some stuff that might be useful. I never turn down a chance to help another mama the way the mamas of the blogosphere help me. My friend and I walked and moved on to other topics.

Yesterday I took my daughter out to lunch with her classmate S and S's mom. "Is Peaches an only child?" she asked. "No? Where does your son go to school?" I told her about our Rooster, and she asked, "What do you think caused his autism?" I told her my thoughts, my uncertainties, my questioning process, and my one conviction: "I know parents who believe they know what caused their child's autism. And I just try to respect where they are coming from, even though I don't have any answers or might see it differently. It's a hard road, and everyone has to find their way as best they can. Autism is not just one thing. And there is not one right way to think about it."

Three years ago, the blogosphere embraced me, embraced my family -- my Rooster, my Peaches, my husband and me. They listened to the turmoil, gave me space, sent me love, explained the tools and choices available, offered their own stories and feelings, and, best of all, painted a picture of a brighter future. They didn't promise fixes or tell me I could CURE my son if I did THIS or THAT the way they did, but they -- YOU -- told me that, no matter what happened, time could very possibly help us all in some measure. That, usually, odds are good that time does bring some ease. Children grow. Families learn. Sleep comes. Development unfolds. Wisdom takes root. Usually.

And for us, much of this feels true three years later.

We found one good doctor, changed schools, endured two years of ABA, conquered late potty training, evolved our PT and OT programs, survived IEPs, made peace with the mysterious improvements that a GF diet does bring our son despite our inability to explain why. We tried horseback riding and music, quit speech, joined a social skills group and found a MeetUp.
We sleep more, fight less, laugh some, and work hard.
We have some friends.
I asked our Rooster yesterday, "What is autism?" He said, very, very slowly, "Autism is trying." It is ambiguous, but I like it.

As I write this, one child screams and wails in the next room, and the other tries to soothe. Peaches, my NT almost-five-year-old, has flipped out because I spoke to her sternly, and because she is a drama queen prone to flipping out quite often these days. ABA has taught me she is an attention seeker of the highest proportion. Rooster, who clearly seeks to avoid her noise, offers a refrain of, "Feel better, feel better... please stop crying... behave yourself! Stop crying!" But if he only wanted to avoid the noise, he would walk away. He would take his toys to the playroom and be done. He comforts his sister because he loves her, he hates to see her sad. He comforts his sister because he can. Because he has empathy. Because he loves his family. Because, like the rest of us, he seeks peace.

Three years later, I have a different lens, a different perspective in many ways. I don't expect my family to feel like a Little Bill cartoon or an episode of Seventh Heaven. I haven't given up hope that someday we will be maybe a little more Charlie and Lola and a little less Oscar-the-Grouch-meets-The-Simpsons. But forget about TV, three years later I just look at our family as our family, an example of one, a Casa de Rooster and Peaches. I see where we have been, who we are, and the journey we walk together, step by step.

Today, my son read me a book. My daughter asked him to share a sticker from the goody bag he got yesterday at a party for kids on the spectrum. "Okay," he said. "You can have ONE. But only ONE." Today the sun came out in SoCal after days and days of downpour. Today we get to stay home on a Monday. It's a three day weekend. It's a three year anniversary. It's a pretty good day, three years post autism diagnosis, and that is something to celebrate. And so I celebrate with this gift to myself: writing here at Rooster Calls.

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.