Spinning Plates

  • When meeting a mother and child in the grocery store line, rather than commenting, "Cute baby!" you remark on the child's good "pincer grasp" and "excellent bilateral coordination."
  • Once you get home from the grocery store, you realize that while you now have a cabinet full of mac-n-cheese, Rice Krispie treats and a freezer full of chicken nuggets and fish sticks, you have bought no food for yourself or your husband. And rather than go back to the store, you decide to just eat chicken nuggets this week.
  • Your idea of "Girl's Night Out" is that trip to the grocery store -- by yourself.
  • You have ever warned the exterminator: "Wake the baby up and you are dead to me."
  • With one glance at the screen, you know exactly how many minutes into the movie "Cars" you are and exactly how many minutes until the next commercial break, when you'll be required to find the remote and fast-forward.
  • You finally found your car keys in the dairy compartment of the fridge.
  • You refer to yourself in the third person -- "Mama is going to have the salad bar because salad is healthy" -- when talking to other adults, like waiters and cashiers.
  • In all recent family photos, you realize you have "crazy eyes."
  • When your starving cat meows, you scream, "Feed yourself, you lazy mooch!"
  • Every night, you fall asleep re-reading the same page of the same highly acclaimed literary masterpiece that's been on your bedside table for six months, but you have every word of "Bob the Builder's Easter Adventure" memorized.
  • You make up songs about everything you do -- (to the tune of "Old McDonald": "Mama's getting dressed right now ...") and there's no one in the room to hear them.
  • You count up your list of "10 Signs" and realize there are actually 12.

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Long ago, in a galaxy far, far away, I had a career. I know that to be totally PC, I should add the phrase “outside the home” but I don't look at my family as an alternative career choice. My kids are a higher calling.

teach-typing-kids-200X200

But I used to work full-time, all day, every day, outside the home. I was a magazine editor for years and a journalist and a screenwriter. I once interviewed Rick Springfield -- admittedly, it was on the set of a truly poor Sci-Fi Channel film, but I was so excited I was shaking. (FYI, he's not all that keen on answering questions about "Jessie's Girl" or "General Hospital.") I once did the can-can with Sulu and Chekov from the original Star Trek. I even interviewed the guy who wore the R2D2 suit in Star Wars.

I don't write this to name-drop – because come on, this would be the lamest attempt at name-dropping in the history of journalism. But I loved my job.

When we moved back to Florida, I was thrilled to get a job as editor of Emerald Coast Magazine and eventually, Bay Life. My job was to get to know people and go to events in Northwest Florida. I wrote about everything: real estate, jewelry, crime, health, entertainment – you name it.

If you had asked me back then – as baffling as this thought is to me now – I would probably have told you that I didn't care if I had kids or not. Motherhood wasn't something I thought about that much.

Billy changed everything. When he came along, I had had every intention of going back to work at the end of maternity leave. But then that three months whizzed by and I couldn't let go of him. I couldn't let go of his tiny feet or shake his firm little grasp. I couldn't imagine missing a single smile or not being there to pick him up when he cried.

At first, I tried working from home with him. People had told me, "It's easy at this age. They just sleep all the time." Maybe they were talking about cats, because neither of my children could ever have been described this way.

I freelanced for a while, but as Billy's developmental delays became more apparent and the demands of treating them increased, I let go of the final shreds of my career. A couple of little jobs came up here and there but it was hard for me to commit to even the simplest assignment, because I never knew when our life was going into a minor tailspin, and to be honest, I was super-stressed and finding it difficult to think about anything except Billy's autism.

I'm a control freak. I'm a planner. I like to organize things and make to-do lists and feel like I've accomplished something at the end of the day. I think that made me a good magazine editor. But parenting an autistic child is not something you can do from a Day Planner -- believe me, I tried.

That doesn't mean there wasn't plenty to fill up my Day Planner. Quite the contrary. We had doctor visits, tests, therapy appointments almost every day. From a practical standpoint, it just made sense for one of us to commit to chaffeur duty.

Slowly things started to change. Billy started preschool, Willow arrived and turned out to be world's easiest baby, and opportunities for me to write started to pop up.

This blog, started earlier this year, was my first attempt to dip my toe back into those waters. I was worried, at first, that I would have nothing to say. But when the floodgates opened, I found it difficult to shut up – which is probably one of the reasons I write some of the longest and most rambling blog posts on the Internet.

Then I got hired to be “Tallahassee Motherhood Examiner” for Examiner.com. That makes it sound like I go around examining people's motherhood credentials, but it actually just means that I write about parenting stuff at www.examiner.com/x-43368-Tallahassee-Motherhood-Examiner. I love doing that: I can now turn any afternoon with my kids into a tax write-off. Also, I get paid based on traffic, so if you check out my page, you're actually helping pay for Billy's expensive summer camp. Thanks! That kind of support entitles you to one macaroni craft or finger painting of your choice ... while supplies last.

My kids will never be impressed by my career. I can only imagine the baffling stares I'll get when I one day try to explain who Rick Springfield is. Or that there used to be a different Spock than the one played by the bad guy on “Heroes.” Maybe if had ever interviewed Lightning McQueen or Abby Cadabby it would be different.

But I make a mean batch of Rice Krispie treats, and if my life can serve as any kind of example to my children, I hope it shows them that sometimes the greatest miracles in your life are the biggest surprises; that you're capable of more than you think you are, so keep evolving; and the most exciting conversations you'll ever have will take place, not on movie sets, but in some of the quietest corners of your life with the people you love most.

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Billy started drawing this week. Not just scribbling. Not just stabbing the paper with a pen. Not peeling the paper from the crayons or breaking them or, worse yet, eating them (though we haven't seen that last one in a while, thankfully).

artautisticchild

No, he's been drawing. People. People with hair. People with beards. People with arms and legs. And always with smiles.

He and I have a deal. If he goes to the potty, he can watch "Baby Signing Time" while I load the dishwasher. But he has to draw while he watches the TV in his play room. The first time I explained this deal to him, I set up a piece of art paper on his easel (Ms. Stacee, his occupational therapist at school, explained to me that autistic children find it easier to draw on a vertical surface), turned on "Baby Signing Time," and handed him an orange crayon.

"Draw what you see on TV!" I said to him with a bright smile, trying to make it sound like the most fun activity ever.

He gave me a weird look, and I fully expected to come back into the room and find him peeling the crayon while staring transfixed at the TV. I had to get the kitchen cleaned up, though, because we had guests coming so I left him with it.

When I came back into the room, I was totally shocked that he had followed my instructions. To the letter. The entire surface of the TV screen was orange. And he had his eyeball half a millimeter from the screen, trying desperately to see his program through the crayon.

He had drawn what he saw on TV. On the TV.

And he looked up at me like, "Hey, don't look at me. This was YOUR big idea." I couldn't help but laugh.

Over the past few weeks, when he gets his TV time, he's humored me by making a few half-hearted squiggles on the paper. But the big breakthrough moment came when I wasn't looking.

I copied a move that I saw our private occupational therapist, Kathy Merydith, do during one of her sessions with him: I drew three circles on the paper and said, "Now, can you give the balloons faces?" Then I trotted off to the kitchen to get dinner started and left him to it.

Fifteen minutes later, I realized it was way too quiet in the play room. I ducked my head, expecting to catch him in the act of filling the puppets with Moon Sand or running over Willow's baby doll with his fire truck.

But no. He was still drawing. The three "balloons" now had happy faces, green beards and LEGS! With feet! The cutest little "Ls" emerged from the bottom of each head. And a crooked smile adorned each face, along with both eyes and a nose. I called Dave to tell him the news and he confessed that he was more happy and shocked at that moment than he had been when Willow took her first steps. Willow, who already says two dozen words and colors as well as Billy did just two months ago, will probably always have to work that much harder to amaze us. I know that's not great parenting, and the subject of another blog could probably be how to make the "normal" sibling of a special needs child feel "special" herself, so when I figure that out, maybe I'll write about it.

Anyway, over dinner, we all admired Billy's picture again and dubbed it "Three Happy Guys." Over breakfast the next morning, he reached for his sketch pad and furiously filled it with drawing after drawing, which we named "A Pear Takes a Walk," "Clown Face" and "Daddy Needs a Shave."

Of course, the first thing I did was go out and buy him every art supply known to man. I have sketch books of every size, crayons of every texture, shape, color, and surface, including the bath tub, and a variety of paints.

This morning, he sat down with his Pop-Tart and sketch book and began to draw carefully and slowly. First, there is a giant head. Often, this fills most of the available space. Then he made two dashes for the eyes and added a crooked smile and a round nose. "Where are his legs?" I asked. He thought for a second and then added the miniature "Ls" emerging from Mr. Big Head. Then he hesitated, put crayon back to paper and made straight lines emerge from both sides of the head. "Are those arms?" I asked.

"Arms!" he agreed. Then, "He's sleeping!"

You could have knocked me over with a feather. That was the first time he narrated or explained what he was drawing for me.

"Sleeping?" I just repeated.

"Needs a blankie!" he shouted back to me.

"Well, let's draw him a blankie!" I shouted back. Billy grabbed a yellow crayo and drew a roundish blob on the front of Mr. Big Head.

"Needs a pillow!" he shouted again. Intonation, as you might have guessed, could still use some work. While he's starting to communicate great, Billy tends to shout everything as though he's calling a Bingo game. But I was so excited I was shouting too.

We continued like this, with him adding a pillow, "covers," which is apparently different from "blankie," and "Brown Bear" to the bedroom scene. Then he abruptly decided that "Billy Goes to Sleep" was a completed masterpiece and asked very politely, "Can I be excused?" And he ran off to stage a race between Lightning McQueen and Batman until it was time to leave for school.

I just couldn't stop staring at the picture. After he left for school, I Googled "drawing" and "child development" and found this link:

http://www.learningdesign.com/Portfolio/DrawDev/kiddrawing.html

And this description seems to suggest that Billy is right on target, age-appropriate, with his drawing.

That chart also suggested that kids at this age start to work out problems with their drawings, and I wondered if there was anything going on at night that was bothering Billy. He has several “brown bears” that sleep with him and two pillows, and he has plenty of “covers,” so all I can figure is that maybe he wants a yellow blanket. Or to grow a beard.

I love Billy's drawings. And as I looked through the pages and pages that he has filled in his sketch book the last few days I was struck by how all the faces are smiling. I know that's not unusual in children's drawings, but I think it reflects something beautiful about a child's soul. As Picasso said, “Every child is an artist. The problem is how to remain an artist once we grow up.” I hope Billy never loses that part of himself that sees smiling faces everywhere.

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Child development

Fascinating chart about child development and art but I am a 30 year old mother and I couldn't not do what they show a 8 year old drawing!

A shout-out to single parents: I don't know how you do it. I know this is Autism Awareness Month, but I've got a special message for the single moms and dads out there.

I'm a whiner, and I regularly use this blog to complain about every inconvenience in my life. But I also have somebody to complain to (oh, how he loves that), someone to point out the jelly in my hair, someone to gently lift my head up from the table and say, "Go take a hot bath. I got the kids for the next hour."

Single parents of special needs kids: Your capacity for strength, patience and persistence is so awesome it kind of ticks me off. You're making the rest of us look bad -- not that you have the time to notice. Not that the press holds you up as heroes. No, the single parents of special needs kids that the press covers 24/7 are ones like that insane lady who locked herself and her autistic son in a hotel suite, murdered him and tried (unsuccessfully) to kill herself.

Her story was and is a tragic one. But if you aren't aware of them, there are single parents handling their lives -- and their special needs kids -- with love and devotion every day. They never have enough time or energy or money to meet all the needs that are thrust upon them. They are tired and dedicated, happy some days and worried most of the time, inspiring to me and they don't even know it.

Case in point: Let's call her Sue. (Though that's not her name. I'm not going to write about people without their permission -- unless they are a crazy celebrity.) Sue has not one, not two, but THREE children on the autism spectrum. One son is more severely challenged than the others, 14 years old and still minimally verbal. She rarely gets a full night's sleep. She works full time and still volunteers to help other parents navigate the mire of government programs, special education services and medical tests that come with an autism diagnosis. And I know all this because she approached me in the lobby of a therapist's office with a bright smile and said, "You have a beautiful son. What's his name?"

Sue then told me about her children, describing the fascinating way one them put together block towers, the love her second child had for art, and the amazing capacity that her 14-year-old had for love. "He sees everyone the same," she said. "I've learned a lot from him."

And she said all this, not with the slightly manic, crazed tone of a woman over the brink. No, she was genuinely admiring of her special kids. I only got the details about the sleepless nights and challenges of their autism after we had shared stories for a good half-hour. Rather than a gripe session, she turned every story into great advice about navigating the school system.

I'd love to tell you that after my encounter with Sue, my whole outlook on autism changed and I now see it as a great learning experience and chance for me to grow spiritually. Nah, I'm not quite there yet. I still wish Billy didn't scream when he gets his hair washed or repeat "The Easter Beagle" non-stop throughout breakfast. But I cut him some slack about carrying a bar of soap around the house. I don't see the life lesson in that, but if it makes him happy and he's not hurting anybody, so be it.

But Sue opened my eyes to the fact that single parents have it a heck of a lot harder than I do. As author Robert Fulghum said, "If you break your neck, if you have nothing to eat, if your house is on fire, then you got a problem. Everything else is inconvenience."

Even if you don't have Sue's enlightened outlook on life, I admire you, single parents. (In fact, truth be told, Sue would probably be a little hard to take over long periods of time, because I kinda start feeling like the world's worst mother around her.)

So do me a favor this week: hug a single parent. They probably need it.

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Thanks! I needed this!

I really needed to read this. Sometimes I get so overwhelmed with raising my two small children. Oftentimes, I take out my frustrations on my hubby who would most definitely do anything I asked him to do. I really needed to stop and count my blessings. Blessings of support!!! Support is so easily taken for granted! Thanks for posting this!
Anne
www.southernMOMentum.com

Loved This

I loved your perspective on single moms with special kids. I am one (single mom) and have two (very special kids). Most of us are crazy as a nuthatch, but I am blessed with extended family who take up the slack when my skills or my schedule are lacking. Though that does nothing to remedy my sanity. The boys are my 24-hr concern and if I had no faith I have no idea how I would cope. I done my share of poor coping and having righted that, the boys and I are on a new adventure through life every day. I agree with "sue" in that mine have taught me how to live. From my first, I've learned unending joy in ALL things and you wouldn't believe the things he's been through medically. From my littlest, I've learned absolute, unwavering, and desperate love--unbeatable and unbreakable. And I know that's not all...they just keep on comin'!

From Amanda Broadfoot

I'm so happy to hear that, Bramble! Keep on keeping on, because the world needs to see more strong, loving single parents like yourself -- do you think maybe we could get *you* interviewed on CNN and then they could stop giving us updates on that psycho mom who killed her autistic son. Sigh. Unfortunately, success stories don't play nearly as well in the media as the horror stories do.

But nonetheless, I'm sending you a virtual hug today and want you to know that I don't know how you do it. Please stay in touch, because I'd love to hear updates on how your special people are doing!

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.

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Music Therapy for Autism

To the tune of every SLP's favorite song, "It's Time to Clean Up":

It's time to wake up, it's time to wake up...

It's time to eat breakfast, it's time to eat breakfast...

It's time to brush teeth, it's time to brush teeth...

This song is making me crazy, this song is making me crazy!

I've been a bit remiss about blogging during the past week, but cut me some slack. It was Spring Break, and even though we stayed in Tallahassee, I was bound and determined to make it a memorable week for the kids. We went to the Tallahassee Museum, a traveling carnival in the mall parking lot, visited a creepy Easter Bunny and had a practice egg hunt with our friend EJ and his mom. And during the course of the week, this is what I learned from my kids:

carnival_billyMama1

Beans will grow absolutely anywhere ... except in a plant pot. I planted a pot of them too early in the year, sat the pot in the weak sunlight of one of our back windows and watched their sad little sprouts reach feebly for the light before withering and dying.

Billy, on the other hand, scattered dry lentils liberally around the yard while playing with them. (He likes to scoop them up out of an empty coffee canister and filter them through his fingers.) Now we have a yard full of wild lentils. It's kind of a beautiful metaphor really: Wherever he skips and plays, life springs straight up out of the ground.

If you push a double stroller with 75 pounds of child in it, you don't need any other workout.

It's really hard to explain the Easter story about Jesus' resurrection in a child-friendly way. Billy still gets upset when the Backyardigans go over the rickety bridge. It's much easier to explain why a rabbit delivers eggs (because he's magic).

Easter egg coloring can be really boring. Egg peeling, though, is a great sensory activity.

Florida panthers are not black. But they are incredibly beautiful. Foxes sleep in the morning. So do alligators and skunks and black bears. They sleep a lot. And yelling, "Hey, bear," doesn't wake them up. I swear, though, one of them lifted up his paw and gave me the equivalent of the bear middle finger.

Yoga is a lot more fun with a kid. "Namaste" (NAH-mas-TAY) is Billy's new favorite word ... followed closely by "Mamaste," one he made up which seems to mean "Mama should do Downward Facing Dog while I jump on her back."

Carnies don't care about autism. If you're taller than 48 inches, you're not going in the spinning teacup.

The mall Easter Bunny is still just as terrifying as he was when I was a kid. To me.

The entire Disney "Cars" story, all 782 words of it, by heart. We read it at nap time and at bed time every day. I'm starting to see secret messages in the text, like the Da Vinci Code, Pixar-style.

Every moment can be a teaching moment -- but every moment doesn't HAVE to be. Sit down and take a deep breath sometimes. This was Billy's lesson to me when he laid down on the floor in the middle of a lesson about rabbits and how mammals don't actually lay eggs, put his hands over his ears and begged, "Please stop talking!" After that, we went outside and had a shaving cream fight.

And finally and most importantly, I learned that I can do this. I'm not proud of it, but at the beginning of the week, I was terrified of Spring Break. I panicked that I wouldn't be able to handle having both kids home all day every day, that Billy would somehow regress and become more autistic, that I would take him back to school on Monday and his teacher would ask, "What did you do to him?"

Instead, we've had our best week ever. Yesterday morning, he jumped into my bed, threw his arms around me and shouted, "You're my angel! I love you so much!" I can't wait until school lets out for summer.

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Funny

"Carnies don't care about autism." One of the funniest things I've read all Autism Awareness Month!!! LOL!!!

We are STILL flapping from Spring Break...

and jumping and scripting BIG TIME. Just when EJ was ready to give up on seeing Mrs. Davis ever again, we start back to school. I actually am dreading summer somewhat as I know it is going to be a whole lot of routine changing going on (esp. when we go to DC for three weeks). Hence the conundrum...you want to expose your kids to different experiences and adventures, but it literally takes him three days to get over the excitement of it all. What to do??

JD in TLH

From Amanda

I so feel your pain. We had that experience after Christmas break. During Spring Break, poor Billy didn't get too much change in routine. We did try to go somewhere each afternoon, when possible, but I tried to keep his routine as same as possible up to nap time (which he didn't take ALL WEEK) and in the evening. And I used his same picture schedule that he used at school. And I still expected a huge to-do when he went back, but for some reason, he's been good as gold this week (fingers crossed and knocking on wood furiously). We had huge separation anxiety right before Spring Break, and since he's gone back to school -- none. Maybe he's just tired of me :-)

School Breaks

This is too funny. I think we all have the same anxiety about school breaks don't we? This is the first summer that Audrey is in a year-round school so I haven't had to plan every minute of it. But she does have a 2 1/2 week break in August...so whereas everyone else will be on the countdown for school to start, the pressure will just be starting for me. You wrote this during spring break and said that you couldn't wait for summer...hopefully you are still feeling the same way!

From Amanda Broadfoot

Hmm, I forgot I said that about summer break. Does the fact that I know EXACTLY how many days until school starts speak poorly for my coping skills?

Seriously, though, we ARE having a great time this summer. Got off to a slightly rocky start due to a month of incessant illness, but we're finding our stride. I try to keep the day full of activities (which I try to plan out the night before), INSIST on nap time (it's to all of our benefit that Mama gets a break), and hand my precious cargo over to their father at precisely 5:30 p.m. each evening!

There's a line in the Disney story "Cars" that reads, "Sally was touched." It's the moment when the main car's girlfriend is overwhelmed by emotion when the neon lights of her Route 66 town are lit up for the first time in decades.

cars_lunch

Billy loves "Cars." He doesn't call it "Cars," though. He calls it "Mater," after his favorite character. He loves the movie; he loves the books. He loves the matchbox-sized replicas of the characters. He loves his Mater-themed Pullups and his sippy cup with Lightning McQueen on it. If you have a kid going through a Cars phase, at first you consider yourself in luck, because it's everywhere. Then one day, you look around yourself and realize, "It's...everywhere."

So anyway, Sally was touched. Billy repeats this line as he reaches out his pointer finger and pokes me in the nose. "Sally was ... touched." Poke. Again and again. Sally was touched. Poke.

See? He's touching me.

It's almost like he realizes that he doesn't quite get this line. So he's working it out by thinking aloud.

A lot has been written about how literal autistic people can be, how they often don't get jokes or understand metaphor or irony. So I've been going out of my way to explain this line every time it comes up. "Sally was touched," I say, "means that she was happy, that she felt love. She was touched in her heart." And I pat myself on the chest.

Billy stares at my hand patting my chest. He's thinking.

Poke. "Mama was touched." He smiles. And for the millionth time, I wonder how much he actually knows.

It's like when we were practicing egg hunting this week at his friend EJ's house. Billy loves finding the eggs this year. He'll spot one, his face will light up and he'll go tearing across the yard toward it.

Then he opens it up, eats the candy out of it, and leaves the open plastic egg lying in his hiding place. I looked around the yard at one point and saw half a dozen plastic eggs, broken open and still lying in their hiding place, his basket long since abandoned.

I took his hand, led him to a hidden egg, and showed him how to pick it up and put it in the basket. He sighed, and moved on to the next egg, dutifully picking it up and dropping it in the basket. Then he started singing the "Clean up" song while he worked.

Any parent with a child in preschool knows the "Cleanup song:" Clean up, Clean up/Everybody everywhere/Clean up, clean up/Everybody does their share."

Dave watched him for a second and laughed. "You know," he said in his English accent, "I think Billy has a point. Easter egg hunting is a little bit like bleedin' 'clean up, clean up.'"

One of these days, Billy's gonna be watching "Cars" and finally turn to me and ask, "How can a car have a girlfriend? Or a condo in Hawaii? And if they're all cars, who changes their oil? And who installed the hardwood floors and ceiling fans in the court house?"

And then I'll know he's going to be just fine.

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autismawareness

We made a few changes to the website over the weekend. I say "we," when I actually mean that Dave made changes to the website while I did 45 tons of laundry. That is apparently what "we" did instead of taking down the "Happy Birthday, Princess" decorations, which are now in danger of becoming a permanent part of our interior design. Well, my birthday is in May so I suppose I could just have the world's first 39-year-old Disney Princess party.

At the right, you'll find a list of the most recent blog posts, as well as what people have had to say about them (under "Comments"). If you want to make a comment, just press the "New Comment" button under a blog post and let me have it!

"News" is a new section we've added, because I got tired of searching for "Autism" and "News" every day, and Dave found this cool site that would let me stream it all directly to my blog.

And on that note, Friday is World Autism Awareness Day, a kickoff to April being Autism Awareness Month.
I know I'm opening a can of worms here, but I have to say that I'm kind of ambivalent about the whole "awareness" months and days and ribbons. Not that I think any of it is bad. I just don't know if that's the best use of money and energy.

We could have a thousand people in Tallahassee get together and do a walk for autism awareness. And that would make a great photo on the front page of the Democrat. And we could all wear ribbons that look like puzzles ... and then what?

While we're doing a walk-a-thon, school budgets are getting cut and there are already fewer speech and occupational therapists servicing more autistic kids in the school system than ever. Or not servicing them, because they just don't have time. Billy, luckily, is getting exceptional services from his school system, but I know that there are backlog of kids in schools across the country, waiting to be evaluated before they can even begin to receive treatment. I've spoken to their worried, exhausted, frustrated parents. Believe me, they're aware.

We can raise more money for research, but if we keep researching the same thing over and over again (vaccination-autism link, which has been studied more than 20 times by the CDC alone), then how much progress are we making? I cringe at the thought that Autism Awareness Month is going to bring a host of new opportunities for Jenny McCarthy to preach her hysterical non-science to unsuspecting crowds.

And sometimes "awareness" seems like a consolation prize: We can't cure it. We don't have the funds to adequately treat it. Researching it is a political snakepit. So we're going to hold a rally, name a month, and make everyone aware of it.

As I write what sounds, even to me, like a cynical, smug excuse for doing nothing, I can hear a little voice in the back of my head asking, "So smarty-pants, what are you going to do? What's your big idea?" For some reason, this voice always sounds a little bit like Pee-Wee Herman.

I didn't have a plan when I started writing this, but now I've kind of talked myself into a corner, and I'm going to make a commitment to you: I'm going to call and write to every local, state and federal government official I can find until I get some answers as to why we don't have more therapists in the school system, and an expedited system for getting kids into treatment. For many families school-provided therapy is still the only autism treatment to which they have access.

I'm going to share the information I get with you and maybe, together, we can all figure where the logjam is and who I need to call or write to next month. Because as much as I'd like to think that Yoko Ono, our new World Autism Ambassador, is going to get everything sorted out by April 30, I'm pretty sure I'll still be making phone calls by the time the November mid-term elections roll around.

I'm totally open to hearing the opposing point of view about the necessity of Autism Awareness Days and the important strides that have been made because of them in the past. I'd be happy to find out that I'm completely wrong on this one, because I want to think that the time and money that's going into promoting this is well worth the effort and resources.

Comments

The Grinch Who Stole Autism Awareness

EVERY day is autism awareness for me. I made a resolution on January 1 (and I swear, it is the only one I have kept in my entire life) that from then on, I would take very opportunity to raise awareness when it comes to autism. This mainly happens when EJ and I encounter a stranger and they are getting drawn into his web of adorableness (i.e. his curly hair). They might notice after about 5 minutes or so that he is jumping and flapping a lot or that every time they ask a question, his replies are not quite what they would expect of a 4 1/2 year old child. I

It is right about then that I say, "So, do you know anyone with autism?" 9 out of 10 usually say no and that is when I say enthusiastically, "Well, you do now!!". I have raised awareness at restaurants when EJ is busily hiding under the table or unraveling the fork/napkin combo or rearranging the sugar/Splenda packets. I raise awareness every week when he comes to my office at FSU and he sticks his head out of my office door to greet undergraduates who are waiting on the elevator across the hall. I raise awareness at parks when I see other parents eye him curiously as he reverses pronouns and talks a little too loudly to their children. Every day, every chance I get, I make others aware that autism is not always Rainman and that many children with autism and I quote one mother at the park, "look completely normal" (I guess we left the "I have autism" tshirt at home that day).

Therein lies the biggest reason why I raise awareness for children with autism like EJ. He has communication, sensory, social and cognitive issues which usually manifest mildly (depending on the setting), but sometimes he can act or behave so much like a typical child that he is judged by a typical child yardstick. Which makes people think he just needs some good old fashioned discipline or that he is just odd. Or maybe the way I am raising him is odd. Or something. But not autism.

Thinking globally, acting locally- JD in TLH

From Amanda

I like your style of awareness-raising. If everyone with an autistic child followed your lead, there would be much less need for a World Autism Awareness Day. It's much more effective, I think, for people you run into to actually meet an autistic child that for 1,000 people to put puzzle magnets on their cars. (Not that I have a problem with puzzle magnets. Every time I see one, I experience a slightly guilty feeling that I haven't bought one.)

So I'm gonna follow your lead. The next time Billy decides to eat his cheese sandwich at Beef O'Brady's under the table, I will make a point of introducing the puzzled but sweet waitress to her autistic patron :-)

Some thoughts on research

Ajay and I are constantly amazed at the misdirected efforts of various awareness groups. Take, for example, breast cancer. While awareness campaigns and lobbying may have had a place a couple decades ago, it's hard to imagine what they're really accomplishing now. It's terribly politically incorrect to point this out (and I'm a complete chicken/hypocrite- I just wrote a check for another Susan G. Komen walk a friend is doing!), but the fact of the matter is that there are several successful drugs on the market and pharma/biotech companies are literally investing hundreds of millions of dollars in developing more. All the breast cancer fundraisers in the world are a spit in the ocean compared to that. The only real value in "awareness" lies in changing human behavior- whether it's increasing screening/diagnosis rates or helping people relate to those with a particular condition, a la JD's comments.

On the topic of research, there are two organizations who I think "do it right:" the Alliance for Lupus Research and the Cystic Fibrosis Foundation (for full disclosure, I sat on the board of the ALR, but while this is a bit self-congratulatory, I certainly didn't invent their strategy!). Both groups took the approach of funding a ton of basic science research. Basically they started from the perspective that biotech/pharma companies are by far the most likely to develop successful therapies, but until we better understand what the disease is, they remain "uninvestable" areas for industry (their evil investors don't let them spend willy nilly on things they're unlikely to have success at). So nearly all of their funds are given to a board comprised of scientists who distribute them as grants to basic science researchers (in both academia and industry, which is interesting) who submit proposals to study some theory on disease mechanism in the lab. CF knowledge- largely as a function of the simplicity of the disease- progressed much faster and the foundation has evolved to fund very early stage drug development as well. As soon as the infrastructure of the disease landscape was in place, drug companies started investing in therapies targeting the aspects of the disease the researchers had uncovered. Lo and behold, there is a CF drug that's likely to be on the market in a couple years (and the CF Foundation was brilliant- since they funded early stage research at the company, they'll actually get a small royalty on sales of the drug).

The commonality with autism is obviously that we don't know enough about it for companies to invest meaningfully in therapies, so I would argue that similar funding of real basic science research (which, by the way, does not include epidemiology) by a private foundation is the best use of funds. It may be that this isn't a "drugable" disease (or even a "disease" at all), but even the development of non-pharmacologic therapies would be rapidly advanced with more knowledge of what we're dealing with on a cellular level. Maybe what I'm saying is that awareness of the scientific method is what really needs to be advanced. :)

From Amanda

I think that is the most sensible approach to the whole issue of "where do we put funds" that I've heard. I think that's what's missing in a LOT of awareness campaigns: a real strategy. Awareness is all well and good, but awareness of *what* exactly? The existence of the issue? How to treat it? The challenges people face with it? And once we're aware, what is our next step? How can we use this global awareness to make real change? And what should that change look like?

Those are the hard questions, and the autism community seems to have about 41 answers to each one of them. There are so many therapies that promise improvements, if not an outright cure, for autism at the moment AND SO LITTLE SCIENCE to back any of it up! It's so frustrating. And a basic understanding of what autism is is exactly what's missing.

I know so little about what kind of research is going on at the moment. I've read a bit about the work that V.S. Ramachandran has done with the whole mirror neuron theory. And I've read a little bit (as much as my non-science brain could make sense of) about the various genetic theories.

Defining autism is such a political minefield at the moment. As we have discussed before, so much time, energy and money has been wasted on the vaccine nonsense that more credible theories get neither the media coverage nor the funding and attention.

I would really appreciate your letting me know if you hear about any new science that we should look into. It's nice to know that I can get you or Dave to explain the studies to me :-)

World Autism Awareness Day

April 2nd was <a title="April 2 is World Autism Awareness Day" href="http://personalmoneystore.com/moneyblog/2010/04/02/april-2-world-autism-awareness-day/">World Autism Awareness Day</a>, and in case you missed it – here's a little awareness of the affliction. Autism can represent a wide variety of effects, with the mild (including Asperger's disease and mild forms that can come off as just being awkward) to the extreme, where folks need consistent care and assistance for life, and it takes more than a few payday advances for parents to care for children suffering from the disease. Autism is diagnosable early on, but the reason for the disease remains unknown, though there are several theories, affects males a lot more than females, and occurs in anywhere from 2 to 6 people per 1,000.

There was a time when I despaired that by the time my son was 3 or 4, he would abandon me in favor of his dad. Because he was a boy, I imagined that eventually, sports would start to infect his brain and he would come to pity me and my sad lack of any kind of ball-playing skills.

He turns four this summer, and Billy's ball games are still very inclusive of those with special needs like myself. "Billy Ball Tag," one of the games he invented, involves me throwing a ball in his general direction and missing, so that he can shout, "You missed!" I got serious skills in Billy Ball Tag.

Then there's "It's a fumble!" which requires one of us to pick up the football (an American football for those of you Brits who still insist on calling the round black-and-white one by the wrong name), running to the other side of the yard and screaming either, "Touchdown!" or dropping it and yelling, "It's a fumble!" When we fumble, we also have to fall to the ground and pretend to cry. It turns out that Billy's understanding of the rules of football are pretty much on par with my own.

Floortime therapy has taught us to follow Billy's lead when it comes to play. He has better ideas for games than anything put out by Parker Brothers. After he gets comfortable with playing a simple game, we try to add a little complication to it that will encourage his desire to communicate.

Dave is really good at this. He invented "Yummy and Yucky" bubbles. Billy dearly loves to have one of us blow bubbles. I've practically hyperventilated trying to keep up with his bubble jones some afternoons. One day, Dave watched Billy pretending to eat the bubbles. He copied him and Billy laughed. So they spent several minutes trying to catch bubbles in their mouths.

Then he started asking Billy, "Is it a yummy bubble or a yucky bubble?" And after Dave "ate" one and declared it "Mmm-mmm, YUMMY!" Billy tasted one, made a face, and said, "Yucky!" and a game was born. Eventually, another layer was added, as we declared bubbles "hot" or "cold," "scary" or "funny," and so on. Beware Billy if he gets hold of an "angry" bubble; he's like the Incredible Hulk.

Sometimes, when we add a complication to a game -- or a "playful obstruction," as Dr. Stanley Greenspan calls it -- we lose him. He just turns his back and moves on to something else. That's the sign that he's not ready to move up the communication ladder any further that day. Or it could just be a sign that our game isn't fun.

Case in point: "Three Little Pigs." Billy loves to act out certain parts of the fairy tale. He likes the part where he hides in his playhouse and I pretend to the wolf banging on the door. He likes the part where he escapes out the window and the wolf has to run after him. He likes the part where the pig jumps into the swing and flies to the moon to get away (a plot twist Billy added to the story). He does not like any attempt on my part to get him to sit down at the picnic table and do a craft in which we build a stick, straw and brick house.

"Stinky Broadfoot," however, is a game that gets more complicated every morning. It started when he climbed into my bed one morning and I told him that he needed to go to the potty with Daddy first and then he could get into "Mama's bed," as he calls it (I'm not sure he knows that Dave also sleeps in that bed). When he resisted, we explained that if he didn't get a new Pull-up, people would call him "Stinky" when he got to school.

Well, there is nothing in this world funnier to Billy than bad smells. He decided his name was "Stinky" and we all three rolled around the bed making faces and complaining about the smell. The next day, Dave adopted the name "Smelly Daddy" and I was "Malodorous Mama." And every day we have to come up with new names for "stinky." Billy has even developed some sort of dance where he holds his nose and waves his other hand back-and-forth in the air around him. God forbid any child at school should ever have some unfortunate gas incident. My child cannot be counted on for any sense of discretion where stink is involved.

As we were rolling around on my bed this morning, contorting ourselves with fits of laughter, I thought to myself that if this is therapy, it sure beats those months when we had him on the gluten-free diet and I spent all my time cooking. Now I can concentrate on developing my skills in "Billy Ball Tag." I'm our team's starting forward this season.

Comments

Games as Autism Therapy

EJ is a "typical" boy just like Billy when it comes to his love of flatulent sounds. He is still pretty amused by his own and not so much anyone else's, however, I am sure it is just a matter of time. I am dreading the day when he learns the "F" word and revises his current exclamation of "Mommy, I am a gassy boy!".

We got him a soft T-ball set for Christmas and he seems to finally have some interest in "playing" T-ball after weeks of trying to engage him. I should note, however, that he derives the most pleasure not from hitting the ball on the T, but from demolishing my patio plants with the bat. See? Typical four year old boy!!

JD in TLH

Billy Ball Tag

I want to see a video of Billy Ball Tag in action!

From Amanda

First of all, there will be no videos of Billy Ball Tag, as even my ability to laugh at myself has a limit!

Billy does almost exactly the same thing with his T-ball bat. His uncle sent him this awesome kids' pitching machine that pumps a ball out of a shoot a little ways into the air so that you can hit it with the giant bat.

Billy LOVES to watch the balls fly into the air ... and land a few feet away. Again and again.

AND he loves to beat things with the bat. However, we haven't actually got him to put the two together yet :-)

A couple of years ago, comedian Denis Leary (Rescue Me) published a book, Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid. He made some mildly funny comments like, "If God didn't want us to eat cows, why did he make them so slow? Did you ever eat a cheetah burger? No, and you never will." (With that logic, Denis must be scarfing possum burgers on a regular basis.)

denis-leary

He also made the following comments about autism: "There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."

I don't know where to begin. But I don't have to. Leary was royally raked over the coals by absolutely everyone. From the Autism Society to his own college alma mater (for which he very successfully fundraises), everyone was demanding apologies.

He's a comedian. I get that. And I've said before, sometimes autism, like everything else, is funny. His statements, though, were not. They were idiotic, misinformed, tasteless, ignorant and hateful.

But even that I could have forgiven him if he'd come out and said, "You know what? I'm an ass, and I'm really sorry for what I said. I got carried away with being funny and forgot to be a human being."

But no, his explanation, when it came, actually accused everyone else of taking his comments "out of context." Unless the context was "Everything I'm about to say is stupid," I can't imagine how the context could explain away those statements. The title of the chapter was "Autism Schmautism."

Here's what he said as a way of explanation: "The bulk of the chapter deals with grown men who are either self-diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny ..."

Really? This is a big problem, is it? Because I know a lot of people in the autism community in this area and I've never met a single adult who had self-diagnosed himself as a high-functioning autistic to explain away a failed career. I've known some adults that I thought probably were high-functioning autistics, but to my knowledge, they're convinced they are completely normal.

Maybe this is some big trend out in Hollywood; those of you who live there will have to tell me. Stupider things have been trends: bed head, heroine chic, Channing Tatum. Maybe the big thing at LA parties that Denis Leary attends is to stand around and pretend to be autistic. That must make for one weird party.

Or maybe Denis Leary has been in the company of parents of autistic children who are musing on the possibility that some of their own traits seem kind of autistic too. We do that. The whole puzzle of it seems so baffling that we search ourselves for signs of this disorder to try and make sense of its sudden appearance in our families.

Dave and I have spent many a night discussing this very idea that we're both a bit "Aspergers-y." I, for instance, have to read four books at once. They're stacked up at my bedside. I read exactly one chapter in each, move it to the bottom of the stack, and then read a chapter in the next. I also do housework this way -- four activities at once, and I rotate between them until they're all done. I count compulsively. I have a phobia of the telephone. And social situations. And dressing room mirrors (Ok, that's not so much Aspergers-ish as having a fear of seeing myself from behind).

Dave goes completely off the rails if he has the tiniest stain on any part of his clothing. It can be on his pants, behind his knee. And I'm not kidding: We have to turn the car around and go home for him to change.

What does all this amount to? Nothing really. It's just something we do to entertain ourselves or keep ourselves sane. Most people are a little weird if you get to know them. What is normal, anyway?

Autistic kids are described as being "on the spectrum," because autism's baffling range of symptoms, characterstics and behaviors can't be described in one succinct definition. You can be a "little autistic," though professionals don't like to talk that way. Traditional Asperger's falls at this high end of the spectrum. And Rainman is at the other end.

But we're all on some kind of spectrum. Normal, if it exists, is a spectrum. And on any given day, your point on that spectrum can change.

Happiness is a spectrum. Being in love. Sanity. Fulfillment. Being an a-hole is a spectrum and some days I get a little closer to the Denis Leary end of that one than on others.

So maybe Denis Leary knows a bunch of fake autistic people and their fake autistic kids who are using this for ...? For the life of me, I can't really see the advantage. To my knowledge the only perk that being autistic gets you is to the head of the line at Disney World, so maybe they really really like Space Mountain.

But I'm hoping that the next time he has the spotlight and talks about autism, he might focus -- instead of on this imaginary miniscule minority of people -- on the huge number of real autistic kids and their parents who are struggling every day to pay for therapy, find answers, and celebrate the smallest amount of progress. I'll grant you, that's not very funny.

So maybe he could just shut up.

Prompted by all the "Rescue Me" promos I've seen on F/X while watching "Damages," this blog post is an unnecessarily long way to say I won't be watching the new season of "Rescue Me." Because I think Denis Leary is loud and stupid.

Comments

What a loser!

I had no idea Leary had said those things. That shows how popular his book was I guess NOT! He won't get my twenty bucks either.

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