LIFE IS A SPECTRUM

"Take off the mandates for coverage in the state of Nevada and all over the United States," [Nevada Republican Senate candidate Sharron] Angle says in a video from a speech she gave in 2009 at a Tea Party rally in Winnemucca. "You know what I'm talking about. You're paying for things that you don't even need. They just passed the latest one," Angle continues, then makes a reference to autism, using her fingers to make quotes around the term that describes a range of developmental disorders. "Everything they want to throw at us is covered under 'autism' so that's a mandate that you have to pay for...” --Las Vegas Review-Journal, Sept. 24, 2010

Apparently, Sharron Angle doesn't believe in autism. Or maybe she's like that character Joey from Friends and doesn't actually know what air quotes mean.

Either way, I don't understand her point: That autism doesn't affect enough children for it to be worth the cost increase in premiums that cover it? Well, I'm sure that premiums would be much lower if they excluded all diseases, disabilities and illnesses. Pure profit. Cover nothing; just charge premiums.

I think that some people in the country are under the impression that the second mandates when into effect – and Florida passed one of these laws – people were just beating down the door to get an autism diagnosis and jump on board for some fun, free speech, occupational and behavioral therapy. There's no better way to spend your day than sitting around the lobby of the speech and hearing clinic. I can't get enough of that place and its turtle tank.

Florida's law is a good piece of legislation that helps a lot of people. But not us. We're one of those families that slipped through the (rather large) gap in the law. My husband works at a company with fewer than 50 employees, so despite the fact that as a smaller group we pay higher premiums and higher deductibles, autism is not covered. (For some reason, our deductible went up $1,000 this past year, though.) We can, luckily, get some speech and occupational therapy by using a medical diagnosis code of “static encepholopathy,” provided by our neurologist.

As I mentioned last week, we looked into the option of switching to Florida KidCare. It's not one but actually several different programs. During the first call, a customer service rep told my mother that yes, all autism therapy was covered by KidCare.

On further investigation, though, we discovered that's not true. The good news: If your income qualifies you for a subsidized premium (about $20-30 a month) through Children's Medical Services, everything is covered – speech, OT, ABA therapy. If you think you would qualify and would like my contact at CMS, please email me privately at AmandaBroadfoot@gmail.com. She says that she can get you enrolled in 24 hours. (I don't want to post her email here, because I don't want her inundated by Robocommenter with ads for buying cialis online.)

The bad news: If your income doesn't qualify, you cannot buy into this program. You can't even pay an unsubsidized premium.

The good news: There is a KidCare plan that anyone can buy into and the premiums are reasonable (about $159/month) – Florida Healthy Kids.

The bad news: ABA therapy is not covered under this plan.

The good news: You can apply for a Medicaid DD waiver to help with costs of medically necessary therapy not covered.

The bad news: There is a three-year waiting list and it's getting longer every day. You can apply to be bumped to the top of the list, but I was told by my contact at CMS who was kindly lowering my expectations, “They're dealing every day with homeless children and those in life-threatening situations.”

Wow. It had never really dawned on me that there are homeless disabled children out there on the streets, but of course there are. Of course there are. There are homeless autistic children. There are autistic kids in the foster care system. There are autistic children battling other diseases as well. There are autistic children whose parents can't or won't advocate them for any number of reasons.

I still haven't found out how to get coverage for ABA therapy, but we're exploring some options. I have, however, had my eyes opened...

While I was wallowing in my hate hole last week, there were parents out there hoping and praying to God that one day they would end up as lucky as me -- living with a roof over their heads with plenty of time and money and food for their kids and the opportunity to give them the best kind of therapy available anywhere: the loving support of a happy home.

So I'm out of the hate hole – though I am sparing a little bit of intense dislike for Sharron Angle and her air quotes around “autistic.” If she doesn't believe in autism, I'd love to put her in a room with Billy and challenge her to get a word in edgewise during one of his recitations of Alvin and the Chipmunks.

But when I was ranting on Facebook about Angle and her wingnut disbelief in autism, my friend Brian responded succinctly, “That's OK. I don't believe in Sharron Angle.” Tru dat.

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Med. Waiver

Thanks for that kick in the pants, Lynn. I hadn't done it yet -- I've been feeling sort of like a balloon with the air let out since last week. But you're right: the last three years have certainly flown by. And it's not like we're not going to need the money in three years -- as much as I'd like to think our finances are going to skyrocket :-) I'm going to get that process started this week.

Sharron Angle can kiss my fat ass

Did you put yourself on the waiting list for the waiver? Even though there is a 3 year wait, the waiver takes them until they're 18 or 21 and three years goes by awfully fast. Don't feel guilty like you are taking someone's spot that needs it more...that wouldn't happen. In IL they said that I would never qualify and then out of the blue they did a lottery and I got it. So you never know...

I never get emotional over ANYTHING on the Internet. Never.
But when you talked about homeless and other unfortunate children with autism and other diseases, I got a lump in my throat and a little misty-eyed. How difficult it must be for them not receiving therapy and way to possibly make their days less frustrating, in addition to not understanding WHY they can't express themselves. And for those with severe autism, possibly being abused by parents or caretakers not having the patience and education to know why their child acts the way they do.

It breaks my heart to know that children are subject to either scenario, and so many more. It's so hard to want to love all of them yet feel so helpless because you can't.
You can only speak out for the disease and those unable to find their voice in hopes it will change what services are available to them. To potentially make their suffering a little less.

Oh, The Irony and Why I Won't Be Ranting Today

The autism mandate does not help us either. I work for FSU, but as a self-insured employer, FSU is also exempt from the autism mandate. Oh, the irony!! FSU has an growing Autism Institute, but it will not cover speech and language therapy for the autistic children of its own employees through its own speech clinic!

It is not all bad news. As an FSU employee, I do receive a discounted rate for speech therapy and the remainder that is paid out of pocket can be deducted from my Medical Reimbursement Account. Which means it is from pre-tax dollars. Which means I am getting a break from the federal government. You see where I am going with this...

I have to stop now. Every time I try to finish this post, I begin to devolve into a rant most unbecoming of your blog :). And life is too short for ranting. Better to spend my time researching Florida's political candidates and getting my vote out for November 2.

Prestigious Award

Amanda, I bestowed upon you an extremely prestigious blogging award. When you get a chance, check it out at my blog. Unfortunately, there is no cash prize that accompanies this honor.

Excellent Post--Again!

Where I live, you can get ABA provided for free through the Country Regional Center. It takes forever to go through their process, and it CAN be difficult to get accepted (they won't take kids with Asperger's or PDD-NOS diagnoses). It took us almost a year to get accepted in. But we chose an agency we love that is 100 percent funded through them. That's the good news. The bad news is because of limited budget resources, they only provided ABA for 2-3 years at most (but that's huge). We're getting kick out of ABA after only a year, but they claim our daughter is really done with it an can't benefit from it any more. After reading what you posted, I feel blessed to have even have gotten the year!

i don't believe in her either!

i wish i lived in NV so i could not vote for this idiot.

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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.

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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.

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Willow turns one on Sunday! I can't believe it's been a whole year since one of the best and worst days of my life. Oh yeah, I'm not going to lie to you. Labor was horrible; there was nothing beautiful about it either time for me. And there are still times when I look at my children's beautiful, giant heads that I get a cold shudder down my spine.

willowballpit

My sister used to joke that I was the Grinch Who Stole Pregnancy, but I felt like there was enough propaganda out there about the beauty of the experience; it was my job to be a living, breathing example of pregnancy's ugly dark side. I gained weight from the top of my head to, quite literally, the bottom of my feet (I went up a size and a half in shoes, and even after losing the baby weight, my feet are still as big as Christmas hams); I had non-stop morning sickness and was so hormonal that when I wasn't crying, I was breaking something ... on purpose.

But that is behind me, and my little WiFi is a daily source of hilarity and real inspiration to me. Until she came along, I didn't realize the things that Billy hadn't done as a baby. She hands me things. She pretends to talk. She learnes new words every day. Her vocabulary now includes "Mama," "Daddy," "BEE!" (Billy), "baby," "cat," "up," "ice," "buh-buh" (bottle), "Nan," "Pop," "bye," the list goes on.

And one horrifying profane word that I cannot print in this family-friendly forum. She didn't learn this word from us. This word is not one that gets spoken in our house or even when we get cut off in traffic.

No, this word is a strange example of how children learn to communicate. Willow plays with sounds, and two of her favorite words for a while were "cat" and "cook-cook" (cookie). Well, she kept playing around with variations on these words, changing the vowels around -- "cot," "bok" ... you see where this is going -- until she hit on just the right word to make Mama pop her head up and shout, "What did you say?!"

Well, it doesn't get much better than that reaction to Willow. Somewhere in her little brain, she logged this as the word that gets Mama's attention. And it does. I can't help it. I know the right reaction is to ignore it completely, but I'll be honest with you, if we're in public, I give her anything she wants to shut her up.

Yesterday, I was pushing her around the party store in the shopping cart; I had decorated her in this adorable little "Birthday Princess" crown and sash and she was smiling and happily shouting her new favorite word over and over again. People were giving me looks. So I started saying, "No, you can't have a COKE," in the hopes they would buy it. Or, "Oh, you want a COOKIE? No problem; here ya go." And she tossed the cookie down and shouted the word again. I just got out of there before anyone could call Child Services.

BillySmilingWillow

By the time she was born, we were already pretty sure Billy was autistic, even though we hadn't received the official medical diagnosis yet. At that point, his verbal skills were still very limited, so we didn't know how bad things would get. I didn't know if he'd ever learn to communicate and be independent or if he'd need care the rest of his life.

These days, we're very confident about the progress he's making, and feel very optimistic that within a couple of years he's going to be very close to his peers in development. But a year ago, I looked at my baby daughter and thought, You'll still be with him when we're gone. You're so small and already have such a big responsibility. I have known adults who care for adult siblings with special needs and they are unsung, uncelebrated, often unappreciated (sometimes even by those they care for) heroes.

So a year later, it does my heart good to see Billy pull his baby sister into his lap. When she sees him, she shouts, "Bee!" and "Up!" He smiles, hugs her and holds her, wrapping his big lanky body around her. When she's in the tub he says, "Willow, close your eyes. I'm going to wash your eyes," imitating the things I say to him when I wash his face. And then he gently helps me wash her hair and brush it.

It never occurred to me that he would take on the responsibility of looking after her so quickly. But he's the big brother. She's the baby sister. And with any luck, they'll spend the rest of their lives looking after one another.

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Tears!

This is a beautiful piece. My heart swelled with joy and my eyes filled with tears. You've got two awesome kiddos!

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I sat in the corner of the speech therapy room yesterday, holding my breath. Billy was cradling a baby doll. He carefully dipped a washcloth into a tub of water and then dabbed it on the "baby's" head. A small trickle of water ran into its eyes. "She needs a towel!" Billy informed us. "Wipe her eyes!"

billydavetraintable

And he did. Then he laid the baby down, covered it with the towel, and began to recite Good Night, Beach, one of his favorite bedtime stories. He reached for the toy bottle and gave it to the baby. Then he reached for the toy juice bottle and mimed pouring it on the baby's head. We all laughed, including Billy. So he did it again.

I couldn't believe it. My child was engaging in normal, imaginative play. When offered three choices -- a toy farm, Playdough, and the baby doll -- he chose the baby doll and acted out routines with which he was familiar: bath, story time, bedtime, feeding.

This is huge for us. It was only a few months ago, when we started Floortime therapy, that the most interactive play I could really get with Billy was opening and closing doors with him. We did a lot of opening and closing doors.

He liked his toy fort. And he liked his toy barn. But mostly what he did with them was open and close the doors. If I tried to introduce some of the toy figures and engage him in interactive play, he would just turn his back on me and move on to something else.

When I questioned my fellow Floortimers -- a Yahoo! user group composed of parents, caregivers, therapists and others who are engaged in Floortime therapy -- about it, they advised me, rightfully so, that he simply wasn't ready for this level of play yet. Take it back down a step, they advised, follow his lead, and then work your way back up.

So we opened and closed doors. And Dave created a game called, "Open the latch, Daddy!" He placed his hand on the door, making it impossible for Billy to open until he asked for it. We opened and closed doors on the fort. And eventually, we had the Mickey Mouse character demand, "Open the latch, Billy!"

Slowly, Billy started allowing us to introduce the toy figures into the fort game. Then one day, I caught him acting out, word-for-word, an episode of Mickey Mouse Clubhouse, using the fort and the toy figures. When I tried to join in, he backed away. But after a week, he'd let me play too, to assume one of the characters, as long as I didn't change the story. There are not words to describe how much I came to hate the episode, "Mickey's Color Adventure." I dreamed about it.

But then one day, something clicked and Mickey was forgotten. Instead, all his figures had a jumping contest. Uniqua from the Backyardigans won almost every time, for some reason. "Yay! She did the highest jump!" he told me. And Batman was universally crap at jumping. Puff the Magic Dragon won a couple of times, but he had wings, so he was kind of cheating. Day after day, we had jumping contests on the fort.

He began to call the figures by name: Mickey Mouse, Uniqua, "the dragon," and for some reason, known only to Billy, one of the plastic Little People, a blonde girl wearing a hat, introduced herself to the others as, "Hi, I'm Uncle Wes," in a deep, gruff voice. I have no idea why he decided this character was his Uncle Wes, who is actually tall, dark-haired and bears absolutely no resemblance to a blonde little girl, but nonetheless, in our house, Uncle Wes she is.

And for the first time in the past two months, he developed an attachment to a stuffed animal, a stage most children go through at a much younger age. Tah-Tah is named after the teddy bear in the cartoon "Ira Sleeps Over," and Tah-Tah sleeps with Billy every night and travels with Billy to Nan's house whenever he "sleeps over." In the last couple of weeks, Tah-Tah has been joined by Eggbert, a large colorful catepillar; Too-Too, Tah-Tah's little brother; and Eeyore from Winnie the Pooh. Each has a place on Billy's bed, and both Mama and Daddy have to kiss them all goodnight each night. I can hear him talking to them over the baby monitor sometimes, telling them stories and singing them songs. Sometimes, he tells them, "Too-too! Quiet! It's night-night!"

I know all this probably sounds like mundane childhood play to the parents of normally developing children, but to put things in perspective, a year ago, Billy was running over the baby doll with his Big Wheel, and he rarely said anything that wasn't repetition of a book or TV show.

In addition to practicing Floortime at home, both Billy's speech and occupational therapists at Tallahassee Memorial Hospital take a developmental approach; both are Floortime-trained. So his therapy sessions look a lot like play -- in fact, they are play -- where we try to create the desire to communicate, rather than teach him specific phrases to parrot without understanding their meaning.

We are so excited about Billy's growing interest in imaginative play that we keep adding things to his strange little town that includes a medieval fort, a carnival, an airport, two farms and a train station. It's kind of like a soap opera town. And now he also has a little play house with a Mama, Daddy and baby that allow us to act out routines and social situations and practice things like saying, "Hello" and "goodbye."

When I was looking for a doll house online, I found tons of sites where parents were demanding to know whether playing with a doll would turn their son gay. Seriously. When I was a kid, one of my favorite toys was a Easy-bake Oven, and I certainly hope my son has a stronger interest in babies when he grows up than I now have in cooking.

But after Billy had bathed and fed the baby and put it to bed, he had the baby jump back up and announce, "Baby wants to play barn!" So we took out the barn, and the cow, horse, sheep and chicken had a jumping contest. The cow won.

Reader Comments

Playing Daddy

"When I was looking for a doll house online, I found tons of sites where parents were demanding to know whether playing with a doll would turn their son gay."

I bought EJ a Little People dollhouse for his 3rd birthday for the same reasons as you; Floortime, practicing routine social behaviors and social roles, etc. For EJ, the Daddy is always the one who gets up to feed the crying baby and he always makes eggs for the baby for breakfast...not sure where that comes from! I thought my mother and everyone over the age of 45 at the party was going to faint; what do you mean you got him a DOLLHOUSE??! I think that was my first experience with advocacy for MYSELF ("Umm, I'm his mother and if I want to buy him 10 dollhouses, I don't need input or comments or criticisms, thanks much for your support!)

When he was younger, my mom would say things like, "You know, EJ is SO masculine!" as if him being gay was my biggest concern for his future. HA! Since the autism dx last year, I haven't heard a peep about masculinity or questionable toys. Funny how autism can really straighten out a family's priorities!

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