You have no idea what I'm willing to do for my kids' nutrition.

If you'd seen me in Sonny's Barbecue at lunchtime recently, you would have felt sorry for me. You might have thought that the whitest girl on the planet was auditioning to be one of Beyonce's backup dancers ... in a barbecue restaurant, for some reason.

But my goal wasn't VH-1 stardom. It was to get my son to eat chicken.

When my kids came along, along with the last shreds of my career and my pre-baby body went any sense of shame. I'll make an idiot out of myself to end a tantrum and get a smile. And to get Billy to eat? Well, let's just say I've ruined barbecue chicken for a good portion of Northwest Florida. Billy is the only person alive whose appetite is increased by the sight of my booty dance.

I know some of you are probably thinking, "Maybe you could try just being a better cook." But since that isn't going to happen, we've been going with the dancing.

It's working, though. Last night, Billy ate an actual serving of PEAS!

I'm not talking about peas disguised as something else, peas mashed up and hidden under something else, peas baked into muffins (yes, I've actually tried this – don't recommend it). I'm talking about real, honest-to-goodness straight-out-of-the-can (do they come any other way?) green peas.

Favorite food: raisins

Like many parents of autistic kids, I have become semi-obsessed with food over the past few years. Heck, who am I kidding? I've been semi-obsessed with food most of my life.

My recent food obsession has less to do with fitting into skinny jeans and more to do with seeing that my son gets slightly more nutrition than what is contained in a Pop-Tart.

When Billy was a baby, he would eat anything. About the time he was supposed to move up to chunky foods, though, he started rebelling. Looking back, it should have been a sign, but we just thought it was hilarious when he would suck the cheese off macaroni and spit the noodle out.

He got to the point at which he'd eat macaroni and cheese, but that was just about all. For a while, his entire diet consisted of cheesy mac, cheese sandwiches, raisins (don't ask me), chicken nuggets and fish sticks. Oh, and peanut butter. Big fan of peanut butter.

An unfortunate symptom cropped up about this same time: When he watched other people eat something, particularly if it were some food he disliked, he would upchuck. Hurl. Any time, any where. It was almost as though he empathized so totally with the person he was watching that he imagined that he was eating the food. And so he did what he would have done had anyone stuck a blueberry in his mouth.

We were introduced to the concept of the gluten-free, casein-free diet and tried that for a while. After all, it made sense. If there were ever a child who had self-limited his diet to carbs and dairy, it was my son. The idea that his food might be serving as a kind of drug to him made enough theoretical sense that we decided to give it a shot.

That was six months of living hell. I am not a cook, but I home-made chicken nuggets and fish sticks every week with gluten-free bread crumbs. (My homemade fish sticks bore an unfortunate resemblance to something you might find buried in a litter box.) I baked gluten-free bread and bought expensive casein-free dairy products. The ninth circle of Hell for me would involve being locked away somewhere endlessly rolling up stuff in gluten-free bread crumbs.

Get it? Chreese?! Sounds like trees? Cause that's appetizing on your macaroni. (Appetizing = so gross)

We took food with us everywhere we went. Wanna see some black looks? Start unpacking your own picnic at a fancy restaurant serving Mother's Day brunch.

After six months and no real behavior changes – other than those you get when a child ages six months – we slowly started adding first gluten and then dairy back into his diet. Still, we saw no behavior changes.

Now I'm not saying that I don't believe the diet works for any autistic child. It must: There is a certain portion of the general population that is intolerant to dairy and a small portion with celiac disease. It stands to reason that some autistic people would also suffer those intolerances. When you feel uncomfortable – whether you're sick or tired – it affects your behavior. When Billy's sick, things can go completely off the rails: the echolalia gets worse and he's in a bad mood. I absolutely believe that a child with an intolerance to wheat or dairy would feel much better – and behave much better – if those irritants are removed from his diet.

Billy's just not one of those kids.

We decided to make new foods one of our ABA goals. At the prompting of our awesome therapists from BMC, we implemented an eating routine:

At the beginning of every meal, Billy is offered a non-preferred food (non-preferred = loathed), such as corn or peas, in five super-tiny bites on a separate plate. Next to that plate, is his preferred food. For him, that's ice cream in a little cup. For every bite of the non-preferred food, he gets a bite of ice cream. After he finishes his corn (or 15 minutes are up, whichever comes first), then he gets the rest of his meal (bring on the cheese sandwich!), followed by the rest of his ice cream.

For a few weeks, every dinner (we only did this one meal a day) felt like the opening scene of Saving Private Ryan. But he ate his tiny bites in order to get his ice cream.

I was so excited by his progress that when the therapists weren't there, I added extra rewards for each bite: a YouTube volcano video for every bite ALONG with the ice cream, a few minutes on the iPad, and then, I started dancing.

The dancing had a miraculous effect. He started laughing and eating things that prior to this had made him scream like he'd been poisoned. He ate pizza and peanuts and barbecue chicken. He suffered through bananas, though we've since decided he just doesn't like them – which is fine.

I'm trying to figure out a way to disguise nutritious food as birthday cake.

My dancing got more elaborate – until the day our ABA team put the breaks on it. Apparently, dinner isn't supposed to become a poor off-Broadway musical. And apparently, it could cause other problems later if I had to follow him around everywhere doing the Roger Rabbit or The Sprinkler. He's going to have enough challenges in the school cafeteria without having to explain that to his classmates, I guess.

I was convinced that the second I stopped entertaining him with my nightly one-woman show, he would stop eating. In my mind the only thing motivating him was my Humpty Dance.

But no. Ice cream is apparently as motivating as The Worm. Which is probably no bad thing. I got close to injuring myself a couple of times.

One of the biggest realizations I'm come to through this process is that Billy's self-limited diet was, in his case, behavioral and not related to any physiological problem. That being said, I think he started limiting himself because he used to suffer much more pervasive sensory problems related to smell and taste and texture. So we take it very slowly.

And it's been great to see him add things to his diet that he has discovered he likes. I don't force him to eat. I encourage him to eat. My job is “attaboys” and the ice cream currently provides the motivation to try.

Our New Year's resolution has been to eliminate the words “stick” and “nugget” from our kids' diet, to eat fresher, less processed food and to try and bridge the gap between “Billy” food and our food. It's been more successful, more quickly than I could have imagined. Tortellini has replaced mac-n-cheese; soy nuggets have replaced those containing Frankenchickens, and vegetables are easing their way into the rotation on a small scale.

I still occasionally break out my Cabbage Patch, but now we save that for dessert.

Quite a few mom bloggers took a hiatus, or at the very least slowed down their productivity, over the summer. That's one of the reasons The SITS Girls are hosting a Back2Blogging challenge this week. Many of our kids are in school (I'm writing this while Willow naps) so it's time to build some writing momentum.

I want them!! (Thelma and Louise)

AND we get entered into a sweepstakes to win the lovely ladies directly to the left, Thelma and Louise. As my dryer just broke and I've been hanging laundry out to dry all over the house, I would really like to bring either Thelma or Louise (whichever one is a dryer) into my home.

So each day there's a different writing prompt: Today, we're supposed to republish our first-ever blog post.

As soon as I read that, I got kind of a funny feeling in my stomach. I remember that first post. I actually wrote it long before I had a blog. I can't even remember why. My son's autism diagnosis was still new, and the “A” word still had a bitter taste in my mouth:

“Saying the A Word”
(Posted August 2009, written January 2009)

For the past 18 months, we've been chasing a diagnosis for Billy's delays in speech, his differences in motor function, his quirks of personality. My emotions have run the gamut from an extreme skepticism that there's anything "wrong" with him to a growing fear that our early doubts are entirely justified. I've worried, cried, screamed and pleaded with insurance companies, prayed, laughed at myself, and started the process all over again.

Actually, if I'm completely honest with myself, what I've been looking for the past 18 months, is an expert who will say, "Your son is definitely not autistic." I would demand of the therapists and doctors, "He's not autistic, is he?" because to me, that meant the end. That I would lose my son. That he would slip away from me and lose his smiles and affection and love of life -- all of which he has in spades.

Ignoring my crazy eyes and too-long sister-wife hair, the point of this pic is that it was difficult back then to get Billy to look at us.

Well, Billy's three now, and he's not slipping away -- but some of his differences from his peers have become more apparent. He's a bright, beautiful, extremely funny boy. He has an amazing memory and vocabulary. He can answer the question, "What is that?" almost every time. He recognizes animals, plants, people, the planets, food ... but he can't tell you what he did today, what he likes to do, what his name is. He doesn't ask any questions. He spends most of his time repeating entire books, the dialog of a whole cartoon, the question you just asked him.

I know what you're probably thinking: "All kids develop differently. Don't worry about it. Let him develop at his own pace ..." Believe me, I've heard it all. I've said it all to myself.

He can sing beautifully -- perfect pitch and rhythm -- has a catalog of over 100 songs that he knows, and he loves to dance. But he'll have a complete meltdown if you touch his head or offer him anything to eat except macaroni, oatmeal or chicken nuggets. A symptom of his sensory processing problems is his *extreme* clumsiness. It's like he's always looking at where he wants to be, rather than where he is, and he'll fall over the huge coffee table -- which he doesn't see -- in his desire to get to his ball on the other side of the room. He didn't see the edge of the slide, and he fell off and got himself five stitches.

It's not traditional autism. Or at least what I've always believed autism to be. He's loving and affectionate and emotional and funny. But communicating is incredibly difficult for him. It's like he has all this information locked inside him, and he can't make sense of it. So what comes out, instead of what he wants to say, are these things that he's memorized.

So on the advice of a neurologist, we went for an MRI. It was a harrowing experience. The drug they gave him to sedate him had hardly any effect, and when they put in an IV, a meltdown of Armageddon proportions commenced. The results of the MRI: nothing physically wrong. So we get our diagnosis: autism.

I asked our OT, "Is that what autism means now? A lack of brain tumor or seizure disorder or stroke? None of that and you're suddenly autistic?"

She was kind when she responded to me. "No, Amanda. There are benchmarks for communication delay, motor problems and behavior issues -- and Billy meets all of those."

Oh. OK.

I can say it: My son is autistic.

I'm lucky. He's only mildly autistic. Most of his problems are sensory-related. And she's quick to point out that with therapy, he probably has a very good shot at a complete -- or near-complete -- recovery. That's a word that didn't used to be used with autism.

I don't know why the word bothers me so much. It doesn't change the person that Billy is. He's more than a diagnosis. He's a fantastic boy that any mom would feel lucky to love. I guess it's kind of like the way I don't want anyone to know my weight. The number doesn't make me fatter, but I'm not exactly going around with it scrawled on my forehead.

Every day I question every instinct I have, every treatment decision I've made for Billy -- every decision I make full-stop, for both my kids. But I'm starting to see that that's just part of being a parent.

But the A-word doesn't scare me any more. Much.

___________________________________________________________________

It's still not easy, but sometimes he loves the camera! And the camera ALWAYS love him.

I first posted this in August of 2009, but I had originally written it nearly 8 months earlier.

Now I read those words and the anger and fear is familiar to me, but I don't feel that way any more. My recent post, “Life is a Spectrum” is a reflection of how far we've come and how we managed set down a lot of those burdens of anger and stress along the way. It's such an accurate reflection of where we are now that I decided to change the blog to that title.

A few thoughts:

I would never use the term “mildly autistic” to describe Billy any more, nor to I talk about “recovery” any more. You don't "recover" from a differently wired brain. Billy is autistic. His brain is wired differently, in some amazingly wonderful ways, as well as some ways that cause him communication challenges. He's very highly functioning, but that makes him sound like that fancy washer or dryer and doesn't do justice to the fascinating child he is.

I realize now that saying Billy didn't have “traditional autism” was just my way of showing how ignorant I was. There are as many ways to be autistic as there are to be human. And my loving, funny, brilliant, gorgeous, HAPPY son is living one of them.

Also, I now know how much I weigh. Once you've faced your greatest fears for your children, stepping on the scale isn't nearly so scary any more.

Thanks to SITS Girls, Standards of Excellence, Westar Kitchen and Bath, and Florida Builder Appliances for this little moment of time travel. It's nice to be reminded of how far my brave little man has come.

Music truly is a universal language. Even pre-verbal and non-verbal people can be moved to communicate through melody, harmony and rhythm. There's something inside us that literally craves the sound of music.

Therapy based on music is growing in popularity in the autism community. Billy attends Kindermusik with the whole family, as well as a couple of normally developing friends. And we also take him to weekly music therapy sessions at TMH Rehab.

Music therapy can be done in a group setting or one-on-one. Billy's session is one-on-one with the therapist, though I usually attend with him -- and most of the time Willow is there as well, sitting in her stroller, sipping a bottle and occasionally demanding a "cook-cook" (cookie).

At TMH, music therapy is free to their existing clients (we also attend occupational and speech therapy there), because it is a teaching hospital and intern therapists regularly participate in -- and often lead -- the sessions.

We always start with a "hello" song. We take turns singing hello to each of us -- Billy, the teacher, Mama, Willow (who has started waving as soon as she hears that song) -- while the therapist plays the guitar. Sometimes, Billy strums the guitar while the therapist holds it and changes the chords.

Then he gets to choose between a couple of activities. In the beginning, we used a picture schedule, and his two choices would be represented by pictures. For instance, he might have a choice between a drum or puppets. If he chooses puppets, he picks that card and places it on the position for "activity we're doing now." After we're done, he takes the card and puts it in the "All done" pile. That way, he can visually understand that an activity has a beginning and end and that we complete one activity before starting the next.

If he chooses the drum, one of the activities we do is "Leader of the Band." We each hold a drum, and we all sing: "Billy is the leader of the band. Billy tells us when to start and stop." Then Billy has to shout, "Start!" before we can all start playing our drums. And we keep playing until he commands us to "Stop!" That activity helps reinforce the idea that communication helps him to get people to do what he wants. He got the hang of that one pretty quickly. I frequently hear "Stop!" at home. But he also started commanding me to "Tickle!" which was nice.

There are several different puppet-based activities. One of Billy's favorites he calls "Alligator Monkey." It sounds like an inexplicable Japanese cartoon, but it's actually a game in which the therapist holds an alligator puppet, while Billy and I hold five monkey "puppets" (which are really just felt monkey on a popsicle stick).

Then we sing:
"Five little monkeys swinging from a tree,
teasing Mr. Alligator:
'Can't catch me, no, you can't catch me.'
Along comes Mr. Alligator quiet as can be
and he SNAPS that monkey right out of the tree!"

At the SNAP point, the therapist grabs one of the monkeys in the alligator's mouth. At first, I was worried Billy would be frightened by the game. But recently, he's started feeding the monkeys to the alligator as soon as the song starts. He sometimes tries to give the alligator a couple of monkeys at once.

Another favorite game: Bean bags. We each receive a bean bag of a particular color and sing:
"Bean bag, bean bag, where ya been?
Way up high (we hold our bean bag up high)
and down again (we move the bean bag down low).
Bean bag, bean bag, don't get lost.
If you're bean bag is (insert color here), then give it a toss!"
And whomever has the bean bag of a particular color, throws it into an upturned drum.

Music therapy uses instruments like the xylophone and various drums and shakers. We also occasionally use streamers, balls and balloons, bubbles, books. The unifying element is that there is a song involved with every activity, and each game or song helps teach a concept. There's a song for taking turns, a song for greetings and goodbyes, a song for cleaning up, a song for following instructions, even a song for sitting down in your blue chair and not running around the room.

When we started music therapy six months ago, each transition to a new activity was a struggle. Even getting from the lobby to the therapy room inspired a meltdown for the first few weeks. He didn't want to give up one activity or instrument he liked in favor of a new one. But now he'll run right in there shouting the name of whatever instrument he wants to play. He understands that he has to sit down in order to play. And he understands the concept of taking turns. He still prefers "Billy's turn" but he grudgingly accepts that other people get a turn with the Lollipop Drum too.

I'm a huge believer in music therapy for my child. I've seen it work with my own eyes, because Billy loves music. I can ask Billy to do something, and he'll ignore me. But if I sing the command to him, he'll look up, and most likely, respond. Sometimes, as I'm making up a melody and belting out, "Please, please, BIL-ly, stop stick-ing your hands in the toil-LET!" I feel like I'm starring in my own very strange way-way-off-off-Broadway production, but I don't mind that. I like musicals.

Billy was bawling his eyes out yesterday, faced pressed to the front window as his new play date and his mom pulled out of our driveway. "He's gone! He's not here! EJ, where are you?" The "you" is a long heartbroken wail. "He's not here and it's my birthday!"

It's not Billy's birthday. That line came straight from a book called Little Bear. But the emotion is real. He made a new friend and watching EJ walk away at the end of the play date was devastating.

My heart ached, and I had tears in my own throat. I also recognized that rising panic that I feel when confronted with a parenting problem I'm worried can't handle. I looked at him and it was like staring in helpless horror as an injured baby bird flailed around in the middle of a busy intersection. No amount of organization, careful study or regular therapy will ever protect my baby's heart from being broken.

Most people are more familiar with the unemotional side of autism, and we get that sometimes. It's almost easier to deal with. When I pick Billy up from school some afternoons, he's clearly waiting for me. But when he sees me, his first response might be a blank stare. And then suddenly, his face will break into the most brilliant smile and he'll run at me, arms in the air. And at the last minute, rather than throw himself into my arms, he does what we call "the drive-by:" he breaks away and runs in the other direction. It's almost like the emotion of the moment is too strong. He has to back away, size up the situation and then come at me again. It might take three or four tries before he finally accepts my embrace, but when he does, it's whole-hearted. He feels very deeply and sometimes it's too much for him.

When the anticipation of a moment is too strong -- maybe it's a tense moment in a book or TV show he knows very well -- he'll sometimes put his fingers in his ears. Anything to dull the sensory overload, it seems. Like he'll feel it less if he can't hear or see things as clearly. I think we all have moments like that in our lives, when we'd like to put a hazy filter on things, to tone it down just a bit. Billy's heartbreak over the absence of his new friend was one of those moments for me.

Then I snapped out of it. My son may be autistic, but he's no injured baby bird; he's smart and strong. He can handle this, and so can I. "Find Mama's eyes," I told him, and after a last doleful glance at the empty driveway, he turned his tear-stained face up to me.

"Find Mama's eyes," he repeated and then wailed again, "EJ is gone! He's not here!"

"Yeah, I know," I agreed, giving him a big hug. "But he'll come back. He's coming back on Sunday for Willow's birthday. And you'll see him at school, at lunch and on the playground." EJ goes to the same school, but is in a different pre-K class.

"He's not here. He's gone," he says again, but he's not crying now; he's thinking. "He's not here and it's my birthday." But the gears are working in his brain; you can almost watch them move. "Willow's birthday," he seemed to correct himself, and something clicked. "Where's Willow?"

Good point. Crap, where is Willow? In the midst of the drama, I momentarily forgot all about my one-year-old.

We find her playing happily, as usual, in her play yard. She looks up at her brother, squeals with delight, and holds up her arms. "Up!" she shouts. Instead, Billy climbs in the play yard with her. He wraps his arms around her and squeezes, maybe a little too hard, but she's a robust little thing and loves every minute of it.

I watch them play together, arranging figures and furniture in the doll house, and thank my lucky stars that there is no filter on what I feel.


When I first heard about therapeutic listening, I was very dubious. I didn't understand how wearing headphones and listening to weird sounds was going to do anything except seriously tick Billy off. Having completed the program now, we still can't conclusively say that his gains were specifically because of therapeutic listening, but I would call myself a tentative believer. Dave, for the record, is still skeptical.

There are few therapies associated with autism, though, where you can draw a direct correlation between what you do and changes in behavior. If we change Billy's diet and see an immediate derailment into tantrum-land, we sometimes start blaming something he ate. He could also, though, be tired, have taken a irrational dislike to the neighbor's cat which keeps showing up in our yard, or have a headache. Until he can really talk to us about what's going on in his head, we just give it our best guess.

The same thing is true about good behavior and gains in communication. We want so much to believe that any particular therapy is working. Or I should say, I do. Dave is comfortable in the permanent "It's BS till they prove to me otherwise" skeptic position.

So we look for a few things in any therapy: First, do no harm. We have to know that there's no downside before we try something. Secondly, does he enjoy it? We believe strongly in following his joy -- to the point that it does no harm. (He can find joy in riding his inflatable spaceship down the steep staircase but we do have to draw the line somewhere.) Finally, where's the science? We want to see a recent, reputable scientific study with real data -- which I then hand off to Dave to read.

Therapeutic Listening (a trademarked term but I can't figure out how to make that "R" with a circle around it) passed our test. The aim of this therapy is to help autistic kids, with underdeveloped nervous systems, differentiate the human voice from other noises in their environment. Based on what Dave explained to me -- and I could have some of this wrong; I majored in English lit and creative writing and I sometimes, admittedly, tune out when he's talking about science -- this specially filtered music and specially designed headphones help build up certain muscles in the ear whose primary purpose is to recognize the human voice.

You have to find a therapist trained in Therapeutic Listening to administer the therapy. Then you have to buy the special headphones. We ordered ours from Vital Sounds for about $145. And a CD player with a random play button and the ability to turn off the bass. There are about a dozen different CDs, ranging in theme from animal sounds to kid songs to Mozart; special sounds and clicks have been added to each one, and if an adult, with a fully developed nervous system, tries to listen to it, it can make you feel slightly dizzy or even nauseous. I got an immediate headache after about a minute of listening to "Mozart for Modulation."

But Billy didn't. He liked some CDs better than others but on the whole, he didn't mind sitting down for "headphone time" twice a day, for 30 minutes per session. Our OT let us rent the CDs for $10 a pop (if you buy them, each costs about $40) and each CD would last us two weeks. Billy hated the one with dolphin sounds on it (and who wouldn't?! That was two weeks from hell.) but loved "Peach Jamz," which was a series of upbeat kid songs to which he'd sing along. We worked in one 30-minute session before school, usually while he was eating breakfast, and one after school.

Kids are allowed to eat, ride in the car, or play with toys while listening. They can't watch TV or really interact anything with bright flashing lights or loud sounds. Ideally, he would walk around and play while listening, but we could never get him to wear the fanny pack into which the CD player inserts, so he mostly just sat and looked at books or played with table toys.

At the beginning of this therapy, he wouldn't even allow headphones to touch his head. By the end of the series, he had no problem with headphones -- but he still has strong resistance to hair washing, brushing or cutting. He has become much more verbal over the past six months, and his potty training has made significant strides. Six months ago, we were at our wits end with the tantrums and he had also started head-banging, which was alarming to say the least. Now, that is extremely rare. His connections to people are much stronger and his eye contact is much better. He said, "I love you, Mama," to me for the first time in December. He is more likely to look at someone when he's talking to them. Whether he looks up when we call his name is still a crap shoot, but it's better.

** BUT ** (And I want to put this BUT in bright neon letters!!) Therapeutic Listening (insert trademark here) is NOT the only therapy we've been doing. Far from it. We are committed to Floortime, regular occupational therapy, speech therapy, music therapy and Kindermusik. And I can't overstate the importance of going to school and learning from his peers and teachers. He attends pre-Kindergarten five days a week from 8:30 a.m. to 2:30 p.m. and he loves it.

Now that we've finished the Therapeutic Listening series, our occupational therapist has recommended we purchase the CD Billy really likes -- "Peach Jamz" -- and continue on a two-week on, two-week off schedule. Apparently, the nervous system can get too used to one CD if you listen to it every day.

We're thinking about it. We want to see if there are any changes in his behavior when we stop doing Therapeutic Listening (R with a circle around it here) for a while. If so, we may pick it back up in a month. I would love to hear from any other families who tried this therapy. And if you have any questions about it that I didn't cover here, please email me or post a comment. When we started, we were disappointed not to be able to find more experiences from parents online.

Parenting isn't easy on control freaks. I thought that, like most projects I tackle in life, careful study of the right books would fully equip me for pregnancy and motherhood. Whatever. Let's just say that What to Expect in the Toddler Years should contain the subtitle "In an Ideal World." (The Girlfriend's Guide books may not have prepared me any better, but they at least made me laugh. Hard.)

I like to carefully plan out and schedule my day, make to-do lists - for myself and Dave (oh yeah, he LOVES that) -- prioritize said list and then mark off each item with color-coded highlighters. I love highlighters.

My children like to put handfuls of mac-n-cheese in their pockets, develop strange rashes and get various parts of their bodies stuck in various places in the house five minutes before we need to pull out of the driveway to be somewhere. And those are the easy upsets to deal with. The most terrifying thing about parenthood, the thing I was totally unprepared for, is how vulnerable it makes you feel. Suddenly, the source of all your greatest joy and pain is walking around the world, running into things and people and you can't stop it or control it. I suppose I could wrap them up like mummies and feed them like baby birds but that's generally frowned upon by the best parenting books.

I realized fairly early on that I could either loosen the reins a bit or become a heavy drinker. Instead, when things veer off the rails, I organize.

My favorite tools: Velcro, Ziploc bags, a black Sharpie pen, strips of sticky magnets and index cards. During the long road to Billy's autism diagnosis, I became obsessed with organizing his toys correctly, as though the perfect playroom could "fix" him. I would stay awake at night debating whether the baby doll and bottle I bought for him (to practice imaginative play) should be in the "housekeeping" area, with the play kitchen, or next to the bikes, since his favorite thing to do with the baby doll was run over it with his Big Wheel.

I took a picture of every toy and labeled its position in the toy room with a Velcro-ed picture, so that he could practice returning things to the right place. I used those same Velcro-ed pictures on his picture schedule, a tool that helped teach him about his day and how to make choices.

My organization stress response isn't limited to toys, though. The week Billy started school I was so worried that I labeled every shelf in the kitchen cabinets with index cards; then I get blind with momentary rage if I open a cabinet and Dave has put a plate on the clearly marked "over-sized bowls" shelf. On the rare occasions that Dave and I argue, I reorganize his stuff. I might as well; if he's looking for something, he always asks me where it is, so it might as well be somewhere I put it.

He has said that he's afraid one day he's going to wake up and find himself sealed in a Ziploc bag labeled "Daddy" and Velcro-ed to the wall. And I told him that if I were stressed enough to do that, the bag might not be labeled "Daddy."

I'm probably the worst possible parent to deal with my son's autism; at least that's how it feels most days. It seems that no answers are clear-cut, no treatment is without debate, and the experts can't even decide how best to organize the diagnoses and treatments. (For more on the current debate about the American Psychiatric Association's recommendations, click here.)

Most medical doctors will recommend drugs and pooh-pooh the idea of more holistic approaches, such as the dietary interventions. Most parents, therapists and doctors who are very committed to biomedical (diet, supplements, etc.) interventions refuse to believe that every child can't be helped by those treatments. For every non-invasive therapy we try -- therapeutic listening, brushing, supplements, weighted vests, you name it -- there's a website or anonymous blogger somewhere saying how stupid it is.

I have poured over long lists of symptoms of everything from yeast sensitivity to sensory processing disorder. Some symptoms Billy seems to have, some he doesn't. Some seem to match the symptoms of five or six other allergies or disorders. Many of them instruct me to "watch his behavior" after eating certain things. Well, the same behavior that you attribute to wheat allergy could also be explained away by the fact he didn't nap today, his sister got chewed carrots on his Lightning McQueen car, and I won't let him watch TV. In short, controlling his environment and attributing behavior to one particular thing is next to impossible. He's a three-year-old, not a lab rat.

I thought when we started this process that if I found the right expert, I would get a clear-cut prescription and that would be that. Unfortunately, I found too many experts in everything except my child. It turns out that Dave and I (and my parents) are the only ones truly expert in Billy, what works for him and what doesn't. And even that list changes from one week to the next.

It drives me to distraction. But when the stress gets to be too much, I can always go organize Dave's closet.

I've been asked by quite a few people how I feel about the new recommendations of the American Psychiatric Association to eliminate all autism-ish diagnoses (like Asperger's and Pervasive Development Disorder) and simply call everything autism. Everyone is going to be "on the spectrum," to a greater or lesser degree, so instead of receiving an Asperger's diagnosis, a person might be described as having "less severe autism."

To be honest, I don't know how I feel about it. We have long since given up on looking for meaning in labels. There was a time when we thought the diagnosis "autism" would mean something terrible for Billy, but it doesn't. We still have a joyful, smart, funny and loving child.

And his autism is markedly different from the autism affecting other children we meet at the doctor's office or in the lobby outside speech therapy. He is highly verbal, while another child might never learn to speak. Billy has difficulty with transitions and managing his emotions sometimes; a buddy of his from therapy has never had any behavior issues. Billy has a unique set of sensory processing issues: he loves to hug people deeply but doesn't want anyone touching his head. And those issues change from week to week, as he improves certain skills, matures and develops other issues. What works on week may not work the next -- or even from one day to the next.

There do seem to be some common symptoms among people with ASD (autism spectrum disorder): difficulty with eye contact, expressive communication delays and social awkwardness, to name a few. But based on that, I should probably be called autistic too; half the population could probably fall "on the spectrum." As I've said before, if autism is a spectrum, so is "normal" and most of us could debate all day where we fall on that one.

My point is that there doesn't seem to be much point in looking for one prescription for autism. If that's their plan with this universal diagnosis, then I'd have to protest. A diagnosis of autism, in my utterly inexpert opinion, should simply be a starting point to analyzing an individual child's deficits and determining treatment for those particular symptoms.

If this new perspective makes it easier for more people to receive treatment, and to receive it earlier, I'm all for it. If bigger numbers of diagnoses mean more funding for research, again, that sounds good to me.

And if this debate means that the public is better informed about what autism is -- and what it is not -- then that's great. I can't count the number of times someone has observed Billy and said, "I would never know he's autistic." If you're expecting Rainman, you're going to be very pleasantly surprised. Rainman is about as representative of autism as a Porta Potty is of architecture.

So I'll leave the label debates to those more expert than myself. Whether the American Psychiatric Association decides to call my son's disorder autism or "Tallahassee flu," we'll still have the same amazing child and count ourselves lucky every single day.

I never used to think of Tallahassee as a rainy place, but man, if my kids don't get more outside time, one of us (or maybe all of us) is gonna lose it.

At least, that's how I felt until I discovered Carole Stock Kranowitz' book The Out of Sync Child Has Fun. Her earlier book, The Out of Sync Child, completely opened my eyes to my autistic son's sensory processing problems. If you aren't familiar with sensory processing disorder (SPD), it occurs when an underdeveloped nervous system can't make sense of the sensory input it receives. Autistic children are often afflicted with sensory problems, but SPD can be a standalone disorder in some kids.

A child might have difficulty taking in sounds, for instance, analyzing them and assigning more importance to human voices than other background noises. Another child might be “tactile defensive,” making human touch almost unbearable to them. The Out of Sync Child described these dysfunctions and how a parent could use a "sensory diet," a daily dose of the appropriate amount and kind of sensory input, to help regulate a child's nervous system.

Billy has some minor issues with his sense of gravity which results in him craving movement and impact. He also has some tactile defensiveness, specifically related to his head. Smells and tastes affect him in strange ways sometimes, as so certain sounds and lights. By focusing on a sensory diet, a large part of which involves giving him plenty of time and space to run off nervous energy, he can manage these issues to the point that you might not even notice them on a good day.

Rainy days, though, are a challenge. But The Out of Sync Child Has Fun provides parents with fun activities that provide that sensory input inside and outside. Depending upon your individual child's needs, you can choose an activity that engages that sense. For instance, if you have a child who needs to "crash and bang" to organize his/her balance and movement (vestibular and proprioceptive) systems, you can play the "Jack and Jill" game. Touch (tactile) sensitivity can be addressed by playing with "Unpaint." And oral-motor skills can be practiced with "Puffin' Stuff."

Almost all the materials are readily available either around the house or at your local grocery, craft or hardware store. And the great thing about the activities in this book is that they're fun for any kid. So friends, siblings and classmates will happily play along, not even realizing that their nervous systems are getting a little tune-up. Parents with perfectly normally developing children will find a wealth of fun stuff in these pages to entertain their kids, rain or shine.

Here are a few of our favorite rainy day games for preschoolers (games appropriate to ALL age ranges are in the book):

1. Go Fishing
A variation on a popular carnival game, this activity has you create construction paper "fish," with a paper clip attached to each fish's head, and then "Go fishing" with a magnet attached to the end of a string on your "fishing pole." Gross motor control is practiced as the child steadies the pole and magnet to catch each fish. A variation we've tried with this game is to use the pole to catch other small metal objects (such as his Thomas the Train engines).

2. Box Sweet Box
Every parent who has ever had a large appliance box in the house knows the fascination that it holds for children. Next time, store it somewhere in anticipation of a rainy day. Sometimes when we hit a run of rainy weather, a giant box is the only thing between me and total insanity. "Box Sweet Box" plays on the fact that many autistic kids, and Billy is one of them, are "nesters" who appreciate a quiet place to go. And when they help decorate the box, it feels even more like home. Some great ideas that Kranowitz adds include opening the ends and attaching several boxes together to make a tunnel; uses a flashlight to explore and decorate the inside of the box; and depending upon your confidence in your art skills, turning the box into a puppet theater, store, castle or rocket ship to encourage make-believe play.

Pre-writing and writing skills can be practiced on the surface of the box, as vertical surfaces (like easels) are often easier writing surfaces for kids with sensory issues. Crawling in and through the box works gross motor coordination, and of course, a quiet place to nest and rest is a handy tool for any child on the spectrum. (Obviously, this activity doesn't help a child with a fear of small places.)

3. Jack and Jill
Most kids like to crash and bang. Sensory seekers, like my Billy, need to do it. Kranowitz' "Jack and Jill" activity is good for inside or outside. Outside, you would construct a "hill" with a board elevated on one end, followed by a "crash pad," or soft place to land. Indoors, we use my inclined aerobic step (I have the Transfirmer, which is secure in an inclined position), followed by a folded up mattress topper that Billy uses as his crash pad. A bean bag also works. He carries a plastic pail "up the hill" as we recite the rhyme, stomping in rhythm and then delightfully crashes on the floor when Jack "falls down and breaks his crown" with Jill (played by Mama) tumbling after. He can do this 5,000 times without tiring of it. (My personal limit is about 12.)

4. Puffin Stuff
At its most basic, this one is super-simple. You just need a straw and a cotton ball and, as Kranowitz explains, and by blowing the cotton ball across a table, you can exercise the muscles in the face that strengthen the repiratory system and speech articulators. But you can make "Puffin Stuff" as complicated as you like, including different objects to move with the straw, like empty plastic bottles, Ping-Pong balls, feathers, golf balls, tissue, marbles -- and even some things you know will be difficult to move, so that you can discuss why certain things move and others don't. You can have races, create obstacle courses for your objects -- the sky's the limit.

5. Hammer and Nails
Also fairly easy to set up (hammer + nails in log = hours of fun), this one should obviously be closely supervised to ensure that objects other than the log don't get nailed. You'll need to start the nails for your child until they get the hang of it, but if you have a "busy beaver" in your house, this one is a winner. The impact of it really seems to be a great stress reliever. I think adults could get a lot out of this one as well.

If you aren't comfortable with the idea of nails, Kranowitz suggests an alternative: toy hammer, golf tees and an inverted egg carton or a pumpkin into which to pound them.

There are a jillion ideas in the Out of Sync Child Has Fun, complete with recommended supply lists and easy-to-follow illustrations. These are just a few of our favorites, but I'd love to hear about yours.