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 ...

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 ...

---------

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?

------------

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 ...

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.

I feel soooooooooo old. Yes, I'm turning 40 on Saturday, but it feels like 400. I can't remember what it feels like to sleep 60 straight minutes in a row, because the kids, and then both of us, have been sick for a week and a half now. Willow finally went back to school on Friday, and then this morning, Billy got a better-late-than-never start on his school day.

As usual, he found being sick scary, particularly in the middle of the night. Every time he woke up coughing, he would start screaming and run to our room. “I'm so sick!” he would tell us, and then ask, “Can I feel better?”

In fact, despite his fear and illness, he did an awful lot of very good communicating this week. He woke up Wednesday morning by projecting vomiting all over his bed and then repeating the act on me. “Can I have a towel?” he asked each time.

About the third day of his sickness, Dave pointed out, “You know, I haven't heard any echolalia in the last few days.” Echolalia is the repeating of scripts from TV shows and books or even conversations. Usually, Billy still does a lot of that.

When I went in to ask him if he was ready to get up in the morning, instead of giving me a few angry lines from what he calls Math Frogs Go to the Moon he actually asked me, “Can I wait a little while? Can I rest?” I was as shocked as I would have been if he'd suddenly asked me what mortgage rates were down to these days.

Within a few days, though, it was clear that he was saying almost everything in the form of a question. This from a kid who up until a few months ago, never asked questions. Now it was one question after another:

“Mama, can you leave Willow alone?” (His way of asking me to tell Willow to leave HIM alone.)

“Where is our Maglev?” (His way of showing me a video of the French bullet train on the iPad.)

“Mama, can the earth and moon resemble a double planet system?” (His way of telling me, for the 400^th time, that the Earth and moon resemble a double planet system. Thank you, Moon in Your Room CD!)

He would kill at Jeopardy where you have to answer in the form of a question – if the categories were the following: “Willow leaving me alone,” “YouTube videos of Maglevs,” “The phases of the moon,” and “Willow not touching my iPad.”

By the way, I have never understood the point of Jeopardy's little twist of answering in the form of a question. It's just stupid. I love Jeopardy, but counting it against someone if they don't answer in the form of a question is like having a game of super-nerd Mother May I:

"It's true that Yuzuru Hiraga was the Japanese naval architect noted for work on innovative warships such as the cruiser Yubari and Yamato for the Imperial Japanese Navy, but you didn't say, 'WHO is Yuzuru Hiraga.' You lose."

During his bedridden time the past week, he has also been obsessively watching his new Watch Me Learn DVDs, which model social behavior by depicting kids in a variety of settings playing games, eating together, sharing craft supplies, etc.

When he started feeling better he actually walked over to me at my desk and asked, "Mama, what are you doing?"

ME: I'm playing a stupid computer game. (In my defense, I was sick too.)

BILLY: Mama, can I play a stupid computer game too?

ME: Sure!

So I pulled him up in my lap and showed him how to play Word Whomp, which he was so unimpressed with that he then informed me ...

BILLY: OK, now it's time to clean up!

This morning, Billy finally got so bored with all my fussing over him and dosing him with medicines and checking his temperature, that at about 5 a.m., he posed his Final Jeopardy question to me: “Mama, can you go away?”

He was in my bed at the time. And yep, I left it to him.

When Billy sleeps, we all win.

INT. Master Bedroom. Morning. VERY. EARLY. MORNING.

Despite evidence to the contrary, this is not the aftermath of a natural disaster. It is – or once was – a tastefully decorated master bedroom. Now we can barely make out the outline of a bed beneath the mounds of dirty laundry, bath toys, baby bottles (yes, we allowed Willow a bottle again this week), half-filled sippy cups, wadded up tissues and half-empty bottles of children's Tylenol and Ibuprofen.

Four limp figures sprawl on the king-sized bed: two adults (sort of) and two children. One by one, they cough.

BILLY: Daddy has a cough.

(Billy coughs)

BILLY (cont.): Billy has a cough.

ME: Say, “I have a cough.”

BILLY: Mama has a cough.

ME: No, you have a cough.

(I cough.)

ME: And yes, I have a cough too.

(I take his hand and pat his own chest with it.)

ME: “I have a cough ...” (I use his hand to point at Dave.) He has a cough. (Point at me.) You have a cough. (point at Willow) She has a cough.”

DAVE: I just love these little family learning moments.

CLOSE ON

ME as I narrow my eyes at him suspiciously and swig directly from my personal bottle of Tylenol cold medicine.

WILLOW: (clinks the medicine bottle with her bottle) Cheers!

Both my kids have stomach flu again ... which reminded me of the last time this perfect storm of illness hit our family. Because everything in this post pretty much still applies, because my kids have probably passed this on to any number of other unwary children in their classes, and because I'm just this lazy, I'm going to repost my thoughts on ...

Sickness and Autism

Originally posted: 02/19/2010 10:55 am

I'm starting to think our family is being targeted by some insidious form of biological warfare. Their weapon of choice: stomach flu. Brilliant when you think about it: no one suspects foul play and you slowly sap your targets of their will to dress themselves.

I'm not sure what the goal is of this particular terrorist cell, considering we have most of our assets tied up in our extensive collection of Thomas the Train engines. [update: We have diversified into solar system toys and iPad apps.] And we don't have time for any political activism. Heck, we don't even have time for physical activism.

But we're sick again. And when Billy is sick, it's like living with a dozen sick children. Everything is so much worse, so much more terrifying for him. For a child sensitive to the slightest changes in his sensory input -- vestibular (balance/gravity) and olfactory (smells) being some of our particular bugbears -- having a stuffed up head and upset stomach is his idea of living hell.

Actually, I should say that it's one step removed from his living hell: True Hades would be sickness and a visit to the doctor. He has an absolute terror of the pediatrician's office, or any office that looks like it might be harboring a pediatrician somewhere. He had a complete meltdown the first time we visited daycare, because they had a window at the front much like the doctor's office.

We don't go to the doctor unless absolutely necessary. He does get vaccinated -- we have that to look forward to again on his fourth birthday. [Note: we survived that visit amazingly well in the end.] And he's had stitches and antibiotics at various times in his life. But finding a doctor with the patience and bedside manner to deal with what some people see as histrionics is rare. Our hometown doctor, Dr. Greg Sloan, was always amazingly patient with Billy, even though pediatrics and certainly autism were not his specialties.

We've adopted a certain routine when it comes to the doctor, which doesn't eliminate the problem, but does seem to minimize it to a degree:

1. We make sure the doctor's office is well informed about Billy's autism and how autism manifests itself in Billy. Every autistic child is different, so they should know ahead of time that he's strong, likely to be very scared, and may scream. We also warn them not to touch his head unless absolutely necessary.

2. We start talking to Billy about visiting the "Nice doctor" early in the day. We get out his toy medical kit, give his bear "Tah-Tah" a quick check-up, read a few books about visiting the doctor, and let him give us a checkup, checking our heart with the stethoscope, checking our temperature, etc. Then we let him take his doctor kit to the pediatrician.

3. Whenever possible, get the last available appointment of the day. If he does get upset, then we don't have to worry about upsetting quite so many children in the lobby. Also, it means that it we have to wait, the lobby isn't crowded with other new people, which can upset him when he's sick.

4. Weather permitting, one of us strolls him around outside, while the other waits indoors to hear his name called.

5. We insist on the thermometer that can be gently run across his forehead. He still doesn't like it, but it beats the pants off the one they have to stick in his ear.

6. If the doctor is wearing a white coat, ask them to please remove it before coming in the room. And we give them the warning about touching his head again.

7. Whenever possible, we touch Billy for the doctor, such as holding the stethoscope against his chest, using the thermometer, etc. We obviously can't vaccinate him, but the less he gets touched by a stranger, the better.

8. Hold on tight and keep telling him we love him.

With any luck, we won't have to go to the doctor with this round of flu. But I've been reading "The Berenstain Bears Visit the Doctor" just to be on the safe side.

This isn't actually a move from the Young Athlete's program. This is just something he was doing to entertain himself between events.

On Friday, Billy participated in a demonstration, with his classmates, of what he's been working on in the Young Athletes program at school.

Because qualifying kids can't join the Special Olympics until the age of seven, Young Athletes was started by the organization to teach sports skills to younger kids. Billy's school is the only one in our county where the program exists (it requires quite a commitment from the already-time-strapped staff), and we were delighted when it was announced earlier this year.

The best thing about the Young Athletes program is that it's inclusive of all kids. Neurotypical kids are Young Athletes too; in many ways, such as turn-taking, they might act as role models and mentors. In many skills, though, they're learning right alongside their pals with special needs. This wonderful program proves that an inclusion sports program, particularly for younger kids, is not only possible but a huge asset to the school and the kids involved.

Together, these hard-working athletes practice the basics of any sport: turn-taking, following multi-part instructions, working together on a team. They also develop specific skills like hitting and kicking balls, running and jumping on command, completing an obstacle course, etc.

Ms. Laurie, Billy's Young Athletes coach, told us that “At the start of the program, none of the kids could hit a ball off the tee,” but as they demonstrated on Friday, now they all can!

By the time they're seven, some of the kids in the program will have outgrown their developmentally disabled label; some will choose to move on to the Special Olympics. But all the kids will carry with them the important lessons they've learned about teamwork and the joy of sharing the athletic field with friends of all different developmental abilities.

It was inspiring to watch these kids. I felt a surge of pride as each one of them completed the obstacle course and such gratitude to the wonderful teachers and aides who made it possible. I strongly encourage you to ask about the Young Athletes program if you have a child under 7, and to volunteer with the Special Olympics, if possible, in your area.

To find out more about the Special Olympics and the Young Athletes program, CLICK HERE.

The Young Athletes and mentors march in, carrying their toilet-paper-roll torches with solemn ceremony.

Billy learns to catch a ball dropped from above, thanks to Coach Laurie!

“What do elevators, beloved character actor Wilford Brimley, mall maps, flashing yellow traffic lights, the Weather Channel and Allstate commercials have in common?” Griffin's Big Daddy asks. Then he goes on to answer this intriguing question in the pages of his hilarious new memoir, Big Daddy's Tales, From the Lighter Side of Raising a Kid with Autism.

Buy this book! Billy's in it!

F. Lewis Stark (a pen name) is well-known to those of us in the autism community as the popular blogger at BigDaddyAutism.com where he talks about his funny and fascinating life as parent to an autistic son. He also co-hosts the (Weekly? Monthly? How often does this show come on?) radio show "AutismWTF" with fellow autism parent/blogger Lynn Hydoba of AutismArmyMom.com.

Big Daddy's Tales include many memorable, gut-bustingly hilarious anecdotes about the world viewed through the eyes of his adored and adorable son. He also includes many of his Griffin cartoons – which really should get him his own show on the Cartoon Network or Comedy Central (I defy anyone to read “The Farting Continues” without laughing so hard they fall out of their chair).

But this is not a book that puts a shiny fake smiley face on autism. It's not a politically correct book. It is an honest book from a parent who openly shares the fact that his son's autism diagnosis felt, at first, like being smashed in the face by a frying pan. Big Daddy's Tales, though, are proof that you can get smashed in the face by a frying pan and still not forget how to laugh.

Nestled within the anecdotes of the Big Daddy clan are also stories from other parents of kids on the spectrum. Lynn writes an introduction to the book as well as a chapter; other chapters feature stories from bloggers from Stimeyland.com, TheKingAndEye.com, LifeWithASeverelyDisabledChild, LittleBitQuirky, AnybodyWantAPeanut?, LifeInTheHouseThatAspergerBuilt, ChipandBobo, YeahGoodTimes, LivingWithLogan, StuartDuncan, and yep, yours truly. Big Daddy included my Billy musings in the chapter titled, “You're on the Spectrum, Charlie Brown!”

If Life is a Spectrum, this book is the most honest, colorful, funny and touching picture of that wide spectrum I've read – and I have read a LOT of books about autism. A. LOT.

Big Daddy says it best in his epilogue: “If you allow it to be, the world can seem full of sorrows and negativity. We chose to live in joy.”

Order a copy of Big Daddy's Tales by clicking on the button at the right, which will take you to the author's store.

In the studio with the BLES Bobcat news team and art contest winners!

After our Disney bullying experience at the beginning of this year, I thought, “What kind of message are our kids receiving about autism?”

I wanted to make sure that we started the conversation locally as early as possible. I wanted to get ahead of the message, because while Billy's current four- and five-year-old classmates at Buck Lake Elementary School are the best and most beautiful people on the face of the planet (I really believe this), even great kids can turn into Mean Girls. And one day, he's going to that scary place known as middle school.

So, with the sponsorship support of my amazing sister, Samantha Strickland of Pea Green Solutions, I sponsored a poster contest at Billy's elementary school. The rules were very simple: Just do an Autism Awareness Month poster. Talk about how being different is ok and good. Use my blog title in it for extra credit.

About 40 fourth- and fifth-graders participated, and I got the posters back a couple of days ago.

I just boo-hooed as I went through them in my kitchen. I actually felt ashamed for adults and our utter inability to get it. Adults have to try to love the whole world and kids just do it so naturally. What happens to us?

While I already knew that Billy's teacher, his classroom aides, his school therapists and his wonderful principal have the most beautiful hearts, I was floored by the thoughtful and understanding way these young artists approached the idea of autism awareness. With the principal and art teacher's help, we narrowed down the big pile to 11 of our favorites (I couldn't eliminate one and make it and even top 10). You can see all 11 finalists at the LifeIsASpectrum.com Facebook page.

Then our panel of celebrity judges weighed in. And what a great panel we had: co-sponsor of the contest Samantha Strickland, CEO of Pea Green Solutions; Mark Marsiglio, CEO of ThinkCreative Advertising; Rosanne Dunkelberger, editor of Tallahassee Magazine; pop artist Jules Burt; and Jeanette Dummer, assistant director of the Florida State University Honors Program.

Today, we awarded the prizes for the top 5 posters during the Buck Lake Bobcat Morning News (side note: I was totally blown away by how professionally these elementary school students can produce, shoot and anchor a morning talk show -- they could teach the pros a few things).

We had three third place prize winners who each received a $10 cash prize:

3rd place: Joseph R. Joseph R's incredible pencil drawing illustrates individual uniqueness through a cityscape of intricately drawn buildings.

I like the way Odessa D. created faces out of puzzle pieces and mixed media including pencils, pastels and puffy paint.

Striking, simple and effective, Claire H's colorful butterfly is a beautiful metaphor for autism.

Next, came our second prize winners, because Chloe B. and Natalie B. chose to work together on this beautiful design, while incorporates colored pencil and 3-D fabric elements. The artists share the $25 second prize for this beautiful poster:

And finally our first prize winner! The talented Lauren S. clearly "gets it," because in the words of one judge, "I like the suggestion of not just what to do but HOW to do it!" I also love the way a couple of the kids are wearing Life is a Spectrum T-shirts. GREAT idea, Lauren :-) Lauren received a $50 cash prize and FOUR TICKETS TO DISNEY WORLD!!

Thank you to all the young artists, esteemed judges, phenomenal teachers, the wonderful principal Sands and my tireless, creative and supportive sister Sam (did I mention that you should hire Pea Green Solutions for all your marketing needs???) without whom I truly would not have made it through this month.

You have all made this April a very special time for me and my family.