If anyone had told me this moment would be possible even a year ago, I wouldn't have believed it. But autism or no autism, we have no idea what is possible ... Life is a spectrum, yes, but it is so much more. It has dimensions we can't see and takes us on a journey that has as many ups and downs as it has steps forward. Ask a parent to describe a moment so joyful that she can't swallow the tears fast enough, and we realize how inadequate words are to describe life. Luckily, we have more than words. We have iPhones. And we have music ...

Neighborhood. It’s so old-school, right? Most of us probably live in places where there is very little within walking distance. We probably have to drive to school, to the grocery store, to the office.

I’m lucky enough to live in an American community in which I can walk my son to school. When I first realized that was possible, I thought it was cool, kind of a novelty. I thought it would potentially be an outlet for all the energy Billy needs to exert before he can settle down in the morning. I thought it would be a great way to talk about things we see, things we plan to do, where we are going.

All these things turned out to be true. But I had no idea what I would come to value most about our walks to and from elementary school.

High Fives
Every morning, Billy meets Mr. David on his walk to school and gives him a big high-five. Or a small high five. Or he just buries his head in Mr. David’s chest. It depends on his mood. Mr. David is his neighbor, and his hands are up, or his arms are open, depending upon whether Billy needs a high-five or a hug.

Santos
Billy used to be dog-phobic. SERIOUSLY dog-phobic. Still is with some dogs. But every Wednesday, we look forward to an encounter with the world’s sweetest and most docile Golden Retriever, Santos, and his owner. Because of this kind, patient neighbor, Billy is no longer completely dog-phobic. Though Chihuahuas still kinda freak him out.

Holidays
It helps to be known around the neighborhood if your child is going to Trick or Treat with the opening line of “Look at that Grandma! She’s a witch!” Particularly, if the woman in question is, at most, around the age of 40. It helps to be known if your autistic child decides that one particular house deserves to be Trick-or-Treated five times in a row. If you can act genuinely surprised and delighted the fourth time that autistic Peter Pan tricks and treats your house, you will absolutely be getting a holiday basket from the ‘Feet.

Outdoor Safety
Because we walk to school, I’ve had the chance to practice road safety with Billy. He’s learned to “wait at the edge” of the road and look both ways for cars. And when he ignores all my warnings and barrels toward the intersection, Mr. Cedric, the school crossing guard, has a few words with him. Mr. Cedric is one of the kindest, most thoughtful people I know, and he has a personal and encouraging word for Billy every morning. And in the afternoon, if Billy has had a good day, Mr. Cedric is one of the first people to celebrate that fact.

Nothing warms my heart more than the moments when the people in my neighborhood help me keep my son from running into traffic. Mr. Cedric is a god in our household. He’s like Santa. All I have to say is, “Billy, this is Mr. Cedric’s sidewalk, and he is watching you,” and immediately, he slows down.

Friends
Billy has a few friends he sees only on his walk to school. They’re all neurotypical. Some walk. Some ride bikes or scooters. Many of them call him by name. One truly beautiful big-eyed girl actually makes a point to knock on our door a couple of afternoons a week. She plays Wii with Billy, helps me feed the fish, chats about her school day, and generally renews my faith in the human race.

I’ll be honest with you: There are moments when I think it would be easier to NOT be out “in the neighborhood.” It would be a lot easier to pick Billy up and drop him off by car, because every moment and encounter is not positive.

But my neighborhood has shown me how understanding a community can be. And not just understanding, but also rewarding to both me and my son. If I do my job correctly, then he’ll be as independent as is possible for him; he’ll have to be comfortable interacting with the world around him.

I can only hope that he’s lucky enough to live in a neighborhood like ours.

It's Wordless Friday, because I was too inept to get this up on Wordless Wednesday ...

Billy is LOVING the soccer now!

When I first heard the “A-word,” I was devastated because I thought my child was going to turn into some kind of robot. That he would refuse to hug me, become incapable of laughter, never have friends, never know love. That's what I thought autism meant. Because at the time, I had no idea what life on the spectrum would really be like ...

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INT. BEDTIME – LAST NIGHT

Billy is tucked into bed. My hand is on the light switch when he starts whimpering.

Me: Billy, why are you crying?

Billy: I’m crying because, because… because Mama is leaving.

Me: I’m just going to my room. I’m not going very far.

Billy: Can you hug me?

Me: Of course I can hug you.

And I jump up on his bed next to him and give him a big bear hug.

Billy: (muffled, into my shoulder) Can you hug me for a hundred minutes?

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We didn’t hug for a hundred minutes, but we hugged for a long time, long enough for me to remember how afraid I’d been that he would lose this, long enough for a tiny little spark of fear to tickle at the back of my mind: Would a day come when he wouldn’t want to hug for a hundred minutes?

Of course it will. And most mothers fear that day.

If anything, Billy's autism is more about a surplus of emotion, and how to deal with it, rather than a lack of emotion. Most of the autistic kids I know seem to be that way. Billy's emotional maturity is closer to that of his 2 1/2 year old sister than his kindergarten peers. He can go from zero to sixty -- happy to to miserable -- in about three seconds flat. But he usually gets over it just as quickly.

And he’s becoming more independent every day. This new wave of separation anxiety is caused in part, I think, by the fact I’ve been working more. I'm a working mom now, and there are a couple of afternoons each week that I’m not the one to pick him up at school. I put in a full work day each Friday now, and a wonderful grad student in the speech pathology program at FSU walks him home and plays with him for a couple of hours.

I worry about being away from him. I stress that he stresses. I debate about the cost-benefit of having more money to put into therapy and extracurricular activities vs. being home with him full-time.

I’ll be honest: Working is good for my sanity. When I stayed at home full-time with both kids – which I did until fairly recently – I was a crazy person. I am not cut out for that job, because I got steadily crazier with each passing day. I never felt like I was doing a good job, never felt like I finished anything … before it got covered in something sticky and I had to wash it or glue it back together or throw it away when no one was looking. Anybody who thinks stay-at-home parents have an easy job needs a punch in the face ... and a week spent as a stay-at-home parent.

Unlike parenting, at the office, each project has a beginning, middle and end. Even the hardest job just seems so ... easy. Occasionally, I get told, “That’s really good work!” instead of having a small, running, naked person scream, “I don’t want to poo-poo!!” at me. To date, no one at my office has screamed at me because they didn’t want to poo-poo.

Of course, none of them want to hug me for a hundred minutes either.

Billy and his baby sister are thick as thieves these days ...

As it turns out, Billy has the Hand-Foot-Mouth virus. Sound familiar? Then you, gentle reader, must have been here LAST YEAR when we had the EXACT SAME THING. Yes, the only thing that has changed from the post I wrote about this plague, since I wrote it last summer, is that Willow can now say the word "cuddle."

So without further ado, I give you a rerun of last year ...

Hand-Foot-Mouth, Baron Munchausen and the Robot Who Saved the Day

06/22/2010 08:34 pm

We're still sick. And I say "we," because when one of us is sick, we all suffer. Our family is a strategically balanced machine, and when one cog isn't functioning, the whole works grinds to a halt.

I was reticent to share our latest round of illness for fear that people would start thinking I had that Baron Munchausen disease or whatever its called. You know, that psycho disease that you see on episodes of Medium or Law and Order or all those Lifetime movies where the moms keep making their kids sick so that they can take them to the hospital for ... some reason. Maybe they like old magazines or mechanical beds.

Then I realized that anyone who'd laid eyes on me recently would be well aware that I wasn't enjoying myself in the slightest and considering I haven't washed my hair or slept in a week, I'm clearly avoiding drawing attention to myself.

So yep, we're still sick. The third virus.

This one is apparently called “Hand-Foot-Mouth Disease.” I seriously thought that was something that happened to cattle. So after a month of battling respiratory flu and stomach flu, my kids have now apparently got a livestock plague.

But no: It turns out there's no relation to “Hoof and Mouth Disease,” the one cows get. So I guess they could still catch that one.

Hand-Foot-Mouth is a highly contagious (but not dangerous) virus that shows up first, usually, as an unexplained fever. Then it's followed by a rash on the – you guessed it – hands, feet and in the mouth. The whole life of the virus can last two or three weeks apparently. It occurs most commonly in children and also is spread most often in the summer months. Most adults have antibodies to fight it off.

The doctor says that it requires physical human-to-human contact, so most of our friends are in luck. Billy isn't big on going around touching people, so it's unlikely that he's rubbed the cow rash on your children.
I'd never heard of Hand-Foot-Mouth before now (though it's apparently pretty common), so I wanted to get the word out about what to look for: strange, unexplained fever, rash appearing on the feet, hands or mouth and a lack of desire for food.

As soon as we're past this round of illness, I'm going to see a local nutritionist to see if there's anything we can do to boost Billy's immunity. Maybe I'm just paranoid and he's ill no more often than other kids who start school, but it seems as though we've spent the past year doing little more than wiping noses and butts and finding new ways to hide Children's Tylenol in beverages.

We've gone through so much kids' flu meds in the past year that we're thinking of hosting tastings. We can tell you all about the best pairings: Generic ibuprofen and V-8 Fusion, for instance, has a very nice finish. But you don't wanna chase a shot of acetaminophen with rice milk. Recipe for disaster. Children's amoxycillin, however, dissolves nicely in milk.

Anyone have any ideas about boosting immunity? Both kids get a daily multi-vitamin. Our house is not over-run with vermin, and it stays reasonably disinfected, thanks to our long-suffering cleaner.

I've heard something about probiotics helping with immunity, but I have no idea what that is. In fact, when I first heard the term, I thought they were talking about robots.

I could use a robot. Particularly one who could be trained to mix up a V-8/ibuprofen cocktail at 4 a.m. so that I could stay asleep. It would be awesome if it were one of those Tranformers that could also turn into a Hummer and drive us around town and fight crime and stuff.

Sigh. But a robot probably wouldn't be very good at “cuckles” (Willow's word for “cuddles”), and I doubt the Probot5000 would know what to make of Billy's midnight recitation of “It's the Great Pumpkin, Charlie Brown.”

So until the technology improves, they're stuck with me and Dave.

It can be a scary road.

I like to write about Billy's breakthroughs. I love to share our joy when he seems to meet one more challenge that his autism presents … and to try to illustrate how, when he does make progress, he still does that in an autistic way – and that's a beautiful thing. We've undoubtedly been blessed with some beautiful breakthroughs this year.

But it's not all beautiful. And it's certainly not all breakthroughs. Far from it.

It's really hard for me to write about the rough stuff. I struggle with the ethics of sharing his hardest moments. I debate whether talking about Billy's autistic challenges might give people outside our “special needs circle” the wrong impression of autism. After all, there's enough histrionic screeching about “autism epidemics” and such in the press.

But I'm not the press. And I do not speak for the entire community of parents of autistic kids. I speak for my child – when he's not able to do that for himself.

Which brings me to this week. We came back from our glorious vacation, experienced several communication breakthroughs – a couple of which I blogged about here.

And then Billy got sick.

Just a plain old summer cold with fever and sore throat. But for an autistic child who is still making the connection between cause and effect in terms of his own body, this is a very frightening things. In the middle of the night, when he could sleep, he would wake up screaming, “What is HAPPENING to me?”

At least he can ask that now. But I'll be honest: That's one of the few functional things he's been able to say in the past few days. Mostly, we've heard non-stop scripting, crying and, inexplicably, the occasional fire engine sound. (FYI, it's eerie how realistically he can emulate that sound. And that's not something you want to wake to, coming through your baby monitor at 2 a.m.)

It's depressing on a well-rested day to see even temporary regression. But go a couple of nights with no sleep, struggling to calm your terrified, sick child, and it's the recipe for a pretty black mood.

However, last night was better. We discovered that he had an ulcer on his tongue (probably caused by the fever) and once we treated that, he slept a lot better. So did I.

Now I can look at things a lot more practically. This is temporary. The weird, wacky, wonderful road of progress along the spectrum is definitely not a straight route. It takes strange turns. It can trip you up. Sometimes it may be hard to tell if you're getting anywhere.

But as the late, great Buddy Hackett once told me (remind me to tell you THAT odd story one day), “When you get to my age, sweetheart, you realize that the journey is the destination.”

So let's keep moving, OK? If you let me lean on you this week, I promise to stop and pick you up when you need a lift.

Billy had a week off from Camp Escape last week, so we decided to take a family vacation. Last year, at this time, we chickened out of family vacation, because we just didn't think he would sleep in a strange bed. We had visions of long, screaming sleepless nights that scared us into opting for a STAYCATION. Which turned out great.

We've taken vacations with extended family, so that my mom could sleep with Billy – like our New Year's trip to Disney. But we've never managed to pull off an overnighter with just the four Broadfeet.

But this year, we pulled up our big-boy pants, took a deep breath and headed for Disney World: me, Dave, Billy and Willow.

At first, I wasn't sure how much it sunk in with Billy when I told him we were going to Disney World again. I showed him some pictures and explained that we were going on Tuesday: “Today is Wednesday. On Thursday and Friday, we go to camp. On Saturday, we go to gymnastics. On Sunday we go to church. Monday we will stay home and relax. And Tuesday we go to Disney World!”

Each day, I would tell him what day it was, and he would update this mantra to himself: “On Friday we go to camp, on Saturday we go to gymnastics, On Sunday …” and so on.

Still lovin' those Teacups!

For many autistic people, mastering the concept of time can be difficult. This was the very first time I'd seen Billy show real anticipation about an upcoming event. And demonstrate a grasp of days of the week!

He also showed that he had memories of his previous trips, because he talked about the things he wanted to ride – in his own way: “The Teacups, the Crazy Train, The Smaller World, The Dumbo...”

We got an awesome deal on this three-day getaway. First of all, our tickets were comped, thanks to the nice people at Disney. And then Travelocity suggested a hotel deal for us: a two-bedroom villa at Orange Lake Resort (part of the Holiday Inn Vacation Club) for about $120/night (there were some taxes and a $9/day resort fee as well). The catch: we had to go on Tuesday and Wednesday night, but that worked fine for us.

Orange Lake Resort has a huge kids Splash Pool complex, a water slide, an enormous one-foot-deep baby pool with sprinklers, pop fountains, a lazy river ride, a putt-putt course, and a bowling alley.

We didn't actually visit the golf or bowling, because our kids would have spent the rest of their lives at the pop fountains, given the chance.

But Billy did conquer his fear and ride the water slide, which he didn't stop talking about, in wide-eyes wonder, the whole trip: “It goes over your hair!” (His way of saying he got dunked under the water briefly at the end.)

We spent all day Wednesday at Magic Kingdom, mostly in the Fantasyland section, and both kids had an absolute ball. They loved It's a Small World, of course (a friend suggested that this ride is much more fun for adults if you imagine you have a shotgun) and Dumbo.

With our Guest Assistance Pass (available to kids and adults with all kinds of disabilities), we were able to scoot through lines pretty quickly and get to every ride they wanted to ride on that one day. We only had one Cast Member demand to see our Guest Assistance Pass (which he called the “handicapped pass” in a rare moment of Disney non-political correctness) because I guess he couldn't believe our child had any problems. But I have learned – especially after our last fighty trip to Disney – to take this as the compliment it was not intended to be and just get on the bleedin' train.

The obligatory "castle in the background" shot. The excitement is palpable!

I didn't take that many photos this trip, because I really wanted to be in the moment with my kids. Too often on any excursion, we spend so much time setting up photo ops that we ruin the fun. And by “we,” I mean, of course, “me.”

We had FUN. The kids were good company. Billy listened, communicated, and didn't tantrum once. He handled all the stimulation with a pretty good humor, only losing it once, on the Pirates of the Caribbean, which I had tried, in vain, to convince my husband was a BAD IDEA. I wish I could feel more triumphant about being right.

One of the most touching things that happened was the way the kids bonded with each other. At ages two and (nearly) five, they don't really run in the same circles, but in many ways, developmentally, they're about at the same level. And in some ways, like communication, Willow is ahead of her brother.

Still, they found delightful ways to play together. With no cousins, grandparents or other adults (other than us, and we're old news) to coddle them, they stuck together like glue. They goofed in the back seat together on the way down to Orlando (when they weren't fighting as violently as is humanly possible when strapped into car seats at arm's length from one another). Once we were at our hotel, there were games involving chasing and hiding and bouncing on the new beds in “their” room (note: Willow did NOT actually end up sleeping in that room with Billy, but it was “theirs” during daylight hours). None of these games did we remotely understand. And all of them were infused with gales of laughter.

We had "circle time" each night as a family, just like we do when we're at home. We thought it would help Billy transition to sleep more easily if he had the same routine on the road -- to the extent possible. And maybe it worked -- he slept through the night both nights in his own room.

And after they went to bed, Dave and I cooked dinner in the condo, which had a full kitchen, sat together on the screened-in balcony to eat it and actually talked to each other. Mostly, we talked about what an awesome vacation we were having, and in hushed tones, used terms like "just like a normal family."

After we'd been home a couple of days, I went into Billy's room one night to tuck him in and found him playing an involved game on his own. He had upturned Willow's doll walker and was placing his dominoes (he LOVES dominoes) in the little trough created by the upside-down plastic toy.

At first, I was irritated. I didn't know why he had taken Willow's toy or why he was jamming in his dominoes inside of it. But before I started cleaning up the “mess,” something stopped me, and I asked him, “Billy, what are you doing?”

Can you spot the "yayers?" FYI, down below is The Dumbo, The Smaller World and The Crazy Train.

Billy stared at his little project for a minute before picking up one of the dominoes and pushing it down the little trough. “He's having a water slide,” he informed me matter-of-factly.

And by God, on second look, it DID look like a water slide! He was imagining his trip and using his dominoes to act it out!

One little line of dominoes was separate from the slide. Out of curiosity, I asked him again, “What are these guys over here doing?”

Billy stared at the line of dominoes for a couple of seconds. “They're ...” it was clear he was searching for a word. Finally, he finished, “They're YAYING.” And went back to his game.

They're “yaying,” cheering for the domino going down the water slide, just like he did for each of the kids that went down the slide ahead of him. He was actually acting out a little drama of his own, with characters that had roles, and it wasn't a script he had learned but a story that came out of his own imagination, based on his own memories.

This is me yaying.

INT. BILLY'S BEDROOM – NIGHT.

I open the door to find Billy lying on the floor, arms at his sides, legs together, toes pointed. There is an intense look of concentration on his face.

ME: Billy, what are you doing?

BILLY: (without hesitation) I'm playing luge.

A beat.

ME: You mean the sled thing that goes down the ice chute?

Another beat.

BILLY: Mama, will you play luge with me?

CUT TO

A few moments later …

Both of us are now lying on the floor, side-by-side, with our toes pointed.

BILLY: Mama! Are you winning?!

Yes. Yes, I am.

Billy has become really interested in feelings lately. "Mama, how do you FEEL?" is a frequent question.

And he squints his big blue eyes and seems to really concentrate as I give my answer.

He seems dubious of simple emotions lately: happy, sad, silly and tired no longer cut it.

So I've tried to introduce slightly more complex emotions like frustrated, peaceful, confused, etc.

Which brings us to ...

INT. BILLY'S ROOM - NIGHT

It's bedtime. We've just tucked in, had a final story and he has said his prayers.

BILLY: Mama, what are you feeling please?

ME: (thinking about it) I feel peaceful. That's a quiet kind of happy that's good for bedtime.

He squints his eyes as though he doesn't believe me.

ME: And hungry. I have to go have my dinner now. How do YOU feel?

He considers this for a moment, staring thoughtfully at the ceiling. Then his eyes return to mine.

BILLY: I'm concerned.

ME: Concerned? That's a big word. Do you have a problem?

BILLY: Yes.

ME: Tell me about it. What are you concerned about?

BILLY: (emphatically) Mascara.

A beat.

ME: Mascara? Why are you concerned about mascara? Do you not know what it is? Do you not understand what it's for?

Another beat. He considers.

BILLY: Yes.

ME: Well. Mascara. It goes on ladies' eyelashes to make them ... um, darker and longer ... it's kind of like ... paint?

Billy's look has evolved from concerned to what I would call "alarmed."

ME: It's dress-up. Let's just leave it at that. No cause for concern, OK? Absolutely nothing to worry about with mascara.

Then I kiss him on the head and turn out the light.

BILLY: (in the dark) Mama? Are you peaceful?

ME: Yes I am.