Charlie runs into the grocery store and grabs a shopping basket and hums happily on his way to the sushi section.

“Sounds like an owl,” I hear a young man say to a woman who, by her apron, is also an employee. I pause and say, easily, “Yeah, he does the humming because he’s so excited. It calms him down.”

The young man drifts away. The woman smiles, openly and relaxed, and says, “I stock that section and he really like sushi.”

I smile back and shrug, “Oh yes, and he likes it here best.”

And I’m thinking about how good—how great it is—that Charlie has a voice and uses it. So I know just where he is.

Autism myths abound and Kev is collecting, and dissecting, them at this new site. One myth that especailly irks me is the notion that autistic kids are “in their own world” and “withdrawn into themselves” and, generally, “out of it.”

My son Charlie is thoroughly engaged in and attuned to the goings-on of the world all around him. He may not look like he is, and he often does no respond in the usual ways that people are accustomed, to indicate social awareness. Due to his limited language, people tend to assume, or too quickly assume, that he does not understand what is said to him.

But never underestimate how carefully someone, and someone who doesn’t have the “usual,” “expected” responses, might be tuning in.

It’s apparent to everyone—Jim and me, Charlie’s teachers and therapists—that he has a lot of feeling about the arrival and departure of my parents, aka “Gong Gong” and “PoPo” (that’s the Cantonese for “maternal grandfather” and “maternal grandmother”). Charlie gets visibly, thoroughly anxious a couple of days before they visit, in the middle of their visit (as he senses that they’ll be departing at some point), the day before they leave, and the day of their departure. He’s less in control of his nerves, one could say, and generally on edge.

This is painful for Charlie, and for everyone (and certainly my parents who are regular readers here). We all spend a fair amount of time strategizing about how to help Charlie deal with so many feelings, with anxiety, joy, anticipation, happiness; with a host of contradictory feelings that are all mixed up and experienced at once. We’ve tried photos and picture schedules but sometimes those set Charlie even more on edge. I usually try to mention that my parents are coming and going in a rather casual, nonchalant manner, in the course of a general conversation about things, in the hope that it’ll sounds like a routine occurrence, and so be felt more like that by Charlie.

Charlie gave my parents an enthuasiastic and smiley send-off Monday night. He’d gotten a buzzcut at the barber and my parents had take photos of his new ‘do; my mom made vegetable soup and paper-wrapped chicken and Charlie played the piano with brio. He said good-bye, went straight to bed on Monday, and woke early on Tuesday, and got himself ready for the bus. His teacher wrote that he was agitated getting off the bus and had one tough moment in the morning, and then was finishing off a great rest of the day when something seized him just as he was to get onto the bus. He sat for almost five minutes in his seat as I stood in the parking lot and then Charlie ran out, visibly unhappy. I followed him into our condo and he sat in the black chair by the window for 45 minutes with shoes and coat on and—I guess the word would be—-moped.

Then he got up and took his lunchbox out of his bookbag, told me what he’d done at school, and went to find his Leapsters in his room.

The rest of the day was properly boring and routine. We went for our usual walk, well-bundled up and with Charlie slushing through piles of leaves, and then to the grocery store. Last week, the store had lost its electricity earlier in the day and had to throw out many refrigerated and frozen items, including Charlie’s latest favorite, vegetarian egg rolls. The bins were properly well-stocked Tuesday afternoon and he filled a basket and contemplated, and ultimately turned down, some hot dogs. We went home, ate, did a homework sheet, and I recorded hic haec hoc.

Charlie was talking in the background of my first attempts. After the second, he started repeating what I’d said (”hic, haec, hoc, huius…….“). When I tried out the podcast I’d uploaded, he came right over to my laptop and stood listening with a smile.

All while saying, hic, haec, hoc, hu……...

So with Mother Warriors: A Nation of Parents Healing Autism Against All Odds, Jenny McCarthy’s new autism book out, I decided I need to fess up.

I am a retired Warrior Mom.

“Warrior Mom” is the term that Jim used to use when I got into a certain “those administrators haven’t heard the last of us” “did that doctor listen to one word we were saying” “if we don’t do it this way he’ll never get it” “I know best because I’m the mom” state of mind—-that kind of defiant, mother-bear-out-to-protect her cubs mode. I was determined, I’d read everything book and article and stared at websites on my computer screen for so many hours and I was the person who spent the most time with Charlie—–surely I knew the most, and the best.

In some cases, I did. In other cases, I didn’t, and I’d wonder if it was precisely my determination and sense that I had to be right about what to do for Charlie that sometimes blindsided, and blinded, me. Like more than a few parents, my initial feelings of despair, loss, anger, sorrow, and chaos on learning of Charlie’s diagnosis were, I thought, to be overcome by taking matters into my own hands, learning how to the therapies and doing “research” about causes and treatments.

I first read about the special diet on the internet in June of 1999. I stopped at a health food store on the way home and, armed with a pile of printed-out recipes for gluten- and casein free foods, proceeded on home and announced to Jim, wheat has got to go.This all occurred in the days prior to Charlie starting any educational therapies. Jim and I had not been able to get Charlie to come to us when we called him (sometimes, indeed, he flopped down on the ground when we did). We had no faith in our capacity to teach Charlie at that point. But the diet was a different story. Charlie ate very few things in those days as it was, so just starting the special diet meant having to get him to eat something new, and that seemed a good thing.

I wanted, I styled myself, to be like some kind of super mom. And my biggest fight—-the obstacle that seemed to be in the way of all—-was autism.

What changed me was nothing dramatic, nothing revolutionary. When Charlie was 7 to 9 years old and having so much trouble, I started to sense that being the mom-always-ready-to come out kicking and screaming was not the best way to be. I needed to think less, if you will, histrionically about how I’d do anything for Charlie, anything, and focus on strategy, sizing things up, building allies and staying calm.

In McCarthy’s first autism book, Louder Than Words, there are numerous scenes of her (one while clad in Bugs Bunny pajamas, as she notes a few times) screaming and calling for help and doing whatever it takes to get those EMT workers there for her son. This is “Mother Warrior” behavior, the screaming and speaking loudly, the near-hysteria, the willingness to make a fool and spectacle of oneself in the interest of getting the best for one’s child. McCarthy’s taking a lead role in the Green Our Vaccines rally added more to her Mother Warrior credentials, as she made her personal political. She shall be “politically active” in a green kind of way and talk about helping kids, challenging doctors, etc., etc.. For her appearance on Oprah today, McCarthy’s asked people to ask her a question: The Mother Warrior Shall Speak.

These days, while I’ve more to say than ever, I try even more to listen. The “fight” with autism is over, and we accept and hope. We’ve let go of recovery and know that autism is lifelong. I no longer feel I have to deliver a mini-autism-awareness-information lecture when someone looks askance at Charlie.

Sometimes, I kind of feel he’s protecting me.

Tuesday night at the grocery store, after I’d bagged green bananas and cracker boxes and packs of vegetables and frozen egg rolls and sushi (not frozen), I handed Charlie two bags to carry. With the complexities of motor-planning in mind, I helped secure one bag on his shoulder and he lifted the second one up in his hand, and headed out the automatic door to the car. I followed, with only one bag.

Most of the food is for Charlie—-a growing boy looking out for others needs to build his strength.

What gets “disclosed” and what does not was the issue at the center of the recently released document concerning Hannah Poling. I have “disclosure” and “transparency” of a slightly different sort on my mind right now. Charlie’s IEP meeting is today and, amid reading over documents and evaluations and forms, reading up on IDEA at Wrightslaw, writing up some things, reviewing the draft IEP, I’ve been thinking about how key good, honest, and trusting communication is not only in creating Charlie’s IEP, but for his education as a whole.

Charlie’s speech is very limited and—aside from what I observe in his behavior—we rely completely on the reports from his teacher to find out how his day at school went. In Charlie’s school program, the teacher also makes home visits and parents can visit the classroom regularly, so that the teacher can see what Charlie is like in his home environment, and vice versa for us.

This kind of relationship most often gets tested when confusion and conflict arise and, more often than not, when Charlie is struggling, as revealed through behavior problems. As I’ve noted here before, Charlie had a history of regular self-injurious and aggressive behaviors when he started in this school district in June of 2006, and, after careful teaching, these are very much under control. We’ve all learned more about what might be triggering an anxiety attack in Charlie, and what to teach him so that he can ask for a break or to calm himself down. In the past, hearing another child crying has really upset Charlie. He used to get very distressed; now he has been asking to leave the room, or just waits it out by putting his hands over his ears.

Parents of autistic children in Wilton, Connecticut, have started a petition so that school administrators will hold a hearing on the district’s autism program, the May 1st Wilton Bulletin reports. An Autism Program Report (funded by the school district) was issued in October 2006; parents say that “little to none of the recommended changes had been put in place, and their greatest concern is the time to intervene, and possibly make drastic changes to their children’s education, programs and futures has, in many cases, come and gone”:

The parents said the mechanisms put in place for parental involvement and interaction with the autism program are broken.

The Autism Task Force, which is comprised of school staff, attorneys and a group of parents, does not allow for much input, Nancy [last name not mentioned]said.

“The Autism Task Force has one selected parent member who’s allowed to speak,” she said, adding the other two parents must remain silent. “I don’t know what intent there is for parental input.”

The Parent Advisory Board was dismantled in 2006, and when it was reconfigured, parents were told they could apply to serve, she said, with the schools choosing the advocates allowed on the board.

What’s more, Nancy said, members of the Board of Education do not attend meetings of the two groups, nor are the meetings recorded. So reports to the school board members come from the administration.

“I just think that there’s too many layers of filter between us and them,” said Mary.

By petitioning for a public hearing, the parents hoped to bring their concerns about the program directly to the policy makers for the schools.

“It really is about the parents wanting to build bridges with the Board of Education,” said Nancy, another mother. “It’s not productive for anybody, and that’s what exists,” she said of the often adversarial relationship between parents and the schools.

The Wilton parents seek to have more input and interaction among the parents, task force and advisory board and school board about the autism program and about staff hirings. 64 signatures have been collected so far. While it is not clear is the petition has statutory power to force a hearing, parents hope that the Board of Education will recognize the importance of the issue and hold a hearing of its own.

Needless to say, this sort of situation is not what one hopes to find oneself in, talking about statutory requirements and hearings instead of teeth brushing and writing the ABC’s. How ironic, Jim and I have often mused, that communication is so often a problem among parents and professionals, especially considering how hard we all work to teach our kids to communicate.

We’ve so far been very pleased with Charlie’s school program. I’ve already toured Charlie’s new classroom and spoken at length to his new teacher, who has also worked with Charlie’s current teacher on his new programs on his new IEP. Charlie will most likely have the same speech therapist, occupational therapist, and Adapted P.E. teacher. We are seeking ways to have Charlie participate with peers in activities that his interests lie in, in music and sports. We are constantly on the lookout for new ways to teach him to work on reading, typing, writing, and basic math skills.

I’ve been emailing back and forth with the other mothers of students in Charlie’s class. As our kids are moving up to middle school, we’ve decided that we really want to have some sort of ceremony to commemorate the transition, and that everyone’s made it this far, and is moving on—growing up, as I was reminded yet again when, without my asking, Charlie yesterday evening took two bags of groceries out of the car, carried them in (and his towel from swimming), carried the bags into the kitchen, and set about putting everything away in more or less the right places. (Green bananas won’t get too ripe in the refrigerator.) While he did that, I put away laundry, answered some work emails, and kind of had a moment to catch my breath.

That’s all I’ve to disclose of Charlie’s IEP (for now).

A few days ago I asked does your child know that he or she is autistic?—-and now, after Wednesday’s World Autism Day and April being Autism Awareness Month, here’s another question in the same vein:

Does your autistic child know that Wednesday was World Autism Day and that this whole month is Autism Awareness Month?

I don’t like to speak on behalf of Charlie but have a few thoughts on this particular topic. First, no, he’s not particularly aware that Wednesday or this month are focused on him or, rather, on what he “has.” Charlie hardly needs to be aware of autism. When I think about all the news reports, special features, talk shows, general media onslaught of stories about autism that have been circulating, I suspect that most would not hold his interest and no way would he be watching anything on Larry King.

This is not to say that Charlie is not aware of things around him. There has been something very unusual about this month so far and it has thrown things off-balance for Charlie all week:

The bus driver has been sick.

And, the substitute bus driver (who has, understandably, been getting lost, stopping in the parking to make phone calls for directions and instruction, and showing up at odd times) is driving a different bus. It’s an older model yellow bus with a lower ceiling, dark green seats, and the smell of “older bus.” The transportation agency did not inform us that the bus driver was sick; had it not been for the bus matron sitting in the front, we would not have known that it was the right bus for Charlie to take.

But it must just not feel like the right bus—feel right—-to Charlie. Today at 2.45pm after a fine school day he started to cry and say “no go home,” and he was still crying when the bus pulled up. I figured that he would be less happy after school this week as, last week, my parents met him at the bus every day (they went back home to California last weekend; I am “just mom”—what can I say!). The bus rides between home and school are a big deal to Charlie and we’re going to have to make sure that, in the future, we know (so Charlie can know) when the usual bus driver is sick, and the bus is different.

Charlie was unsettled all afternoon. His long-time speech therapist came and he asked for a lot of breaks and kept reaching for his blanket (but an online jigsaw puzzle absorbed him). We went for our usual walk up and down the hill and he kept his hands over his ears. We went grocery shopping and Charlie surprised the checker when he picked up a canvas bag over-stuffed with frozen food, a container of watermelon, two packs of sushi, breakfast bars, and boxes of crackers. “Both hands,” I said and showed him to hold one handle in each hand.

It was late when we got back home, but Charlie took his time to take each item out of the bags one by one and carefully consider where to put them. “Shrimp in the freezer,” I said as Charlie was placing a bag on the top shelf of the refrigerator. He stopped, looked ahead, stepped back and opened the door of the freezer. After seeing where other bags and boxes had been placed, he placed the bag of shrimp in the dead center, then took out a pack of shrimp sushi, got a plate and a fork, sat at the table, and called, “Mom, Mom, sit. Mom.”

If you ask me, someone’s pretty aware about something around here.

Financial struggles plague families of children with autism, according to a study by Deanna Sharpe, associate professor of personal financial planning in the University of Missouri’s College of Human Environmental Sciences and the mother of an autistic son. Science Daily quotes Sharpe, who says

“It is important for us to hear the voices of families who have financial struggles. There is strong pressure to do everything you can for your child. However, there is a great potential for families to spend a lot of money on therapy or new ideas that may be ineffective. Careful evaluation of therapies is important.”

Families quoted in the study did everything from skipping meals to depleting their savings and 401K plans, and even filing for bankruptcy, all to pay for treatments including “specialized child care, speech and language therapy, other types of one-on-one therapy, special interventions, and costly food or drug supplements.” Intensive programs using Applied Behavior Analysis (ABA) can cost $30,000 per year (at least). Other costs mentioned are “compensation and replacements costs for items that were destroyed” by autistic children, and also counseling and medication for parents themselves.

This study, which was published in the Journal of Family and Economic Issues, comes as no surprise: One family has spent $200,000 on therapies and parents sometimes hold fundraisers to raise money for a child’s therapy. As a comparison, back in 2004 it was estimated that it would cost a quarter million to raise a child from birth through age 17. BabyCenter offers a simple tool to estimate how much it would cost to raise a child in 2006 dollars (more than that quarter million).

I’ve never added up everything we’ve spent for Charlie: Besides all of the above, there are lawyer fees; the plumber’s bills (we lived in a one-bathroom house at the time when putting things in the toilet—-duplo Legos—provided great, if fleeting, amusement for one member of our household); fees for particular dentists and neurologists who are not in the network of practitioners covered by insurance; repairs to a beach house we rented; and on and on. Plus there are the realities of clothing and feeding a boy who just doesn’t stop growing: I know I didn’t shrink every one of Charlie’s shirts and pairs of pants, but the sleeves are “bracelet length” and his pants legs are already too short. I always steel myself when the clerk rings up the grocery bill with its so-high-figure; a boy’s got to eat (and eat).

And while there are some things we’ve paid for that I would not have knowing what I know now, I have to say: The gains Charlie has made, and the gains we’ve made as a family of three tightly connected individuals, are priceless and, yes, worth far more than their weight in gold.