LIFE IS A SPECTRUM

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

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

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

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

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

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

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

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

Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Fixityourself.com

Hi Amanda,

Thanks for visiting our blog. That wall is pretty funny - as if we need one more thing in our homes to talk to us! I enjoyed spinning around your blog, too. Lots going on; you have a great voice.

Come see us again sometime!

Eric Linthorst's Film, Autistic-Like on Sensory Integration Disorder

Came on to comment on your Temple Grandin post that I found on MomsLikeMe.com and saw this. Sharing here's info about Father Eric Linthorst's film on sensory integration disorder, Autistic-Like, fyi: http://leisahammett.typepad.com/the_journey_with_grace/2009/10/while-a-three-ring-circus-of-journalists-led-by-the-blogosphere-a-conglomeration-of-government-and-medical-agencies-and-the.html

Thanks for sharing!

Thanks for the link, Lisa ... I will definitely check it out :-)

I cannot cook. My father always said that if you can read, you can cook, and it is true that I can follow directions, but that, to me, is not really cooking. Cooking skill is that magical sense -- at least it seems like magic to me -- that tells you to add a little more of this or that to make food taste better. If one ingredient is missing from a recipe, I am at a loss. I have no idea whether 1/2 teaspoon of paprika is essential or is one of those things you can leave out. I have no more idea what to substitute in its place than I would know how to change an oil filter (do oil filters get changed?).

Before I had children, it never occurred to me to want to learn to cook. When I lived on my own, it seemed like a whole lot of effort for very little reward. After all, if I cooked it, then I would end up eating it, and no one knew better than me how inedible my cooking was. Once when I lived in California, we had a minor earthquake, and some man -- I can't remember if he was with the gas company or the stove company (is there a stove company?) -- came to check that there was no leaking gas after the quake.

Horrified that I might be breathing invisible gas, I rushed him inside my apartment and in the direction of the kitchen. After a very brief inspection, he said, "OK, two things. First of all, your stove is electric, so I'm pretty sure you're OK. Secondly, it's still wrapped in the plastic it was delivered in ... so you haven't turned it on with that wrapped around it .... have you?" I had been in that apartment for 8 months at that point.

Once I got married, there was still no reason to develop an affinity or skill for cooking. I happen to marry an excellent cook who loved to spend time in the kitchen. I loved to hang out there with him, chopping things under his instruction, sipping a glass of wine and talking. David can cook anything with barely a glance to a recipe, but no matter what it is -- turkey sandwich or Christmas dinner -- it takes two hours. I'm not kidding. If he invests less than 120 minutes in the process, he doesn't feel like he's done it right. His culinary skills are truly awesome, but if you're really hungry, he's not your go-to guy.

Our schedules have gotten so busy with both kids, his full-time job, Billy's therapy appointments and life in general that we're usually not able to actually think about eating an adult meal until well after 8 p.m. On the Chef Dave clock, that means that if he's going to cook dinner, we're going to be eating after 10 o'clock.

Enter my new favorite kitchen device: the Crock Pot. Despite its hilarious (to me) name, it has been a lifesaver for our family. My mom bought me a cookbook of crockpot recipes, and I discovered that anyone -- ANYONE -- can cook with a Crock Pot. And it cooks on low all day and is ready for the adults to eat as soon as the little demons start snoring in the evening.

I'm not saying I never heard of a Crock Pot. I'm a Southern woman; of course I know what a Crock Pot is. They were lined up across long tables at every church pot luck, family dinner or company picnic throughout my life. But I thought they were difficult to use, and I thought you could only cook delicious, fattening Southern food in them ... because the people I knew who had them were really good cooks who always cooked delicious, fattening Southern food.

To my surprise, I found that even I could operate a Crock Pot. The directions: Plug in. Turn to "low." Come back in seven hours. Awesome. It's like cooking with a curling iron.

And I found all kinds of recipes in my new cookbook and online. I've made Chinese Beef and Broccoli (from my cookbook - see above), Chicken Tikka Masala, and a healthy Butternut Squash Soup. A couple of my favorite sites are A-crock-cook.com and Slowandsimple.com (which describes more than my Crock Pot).

Dave was dubious about the Crock Pot at first; he's suspicious of simple cooking. I don't know whether it was the tastiness of the final results that won him over, or the fact that I shared with him that it took seven hours to cook. But he's a believer now.

I still don't know how to cook. But I can fool people. And at the next family get-together, I'll have a Crock Pot of my own to add to the line. Watch out!

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Few stories have been better suited to the film format that the life of autistic scientist Temple Grandin. Not because she's a breathtaking

temple-grandin-danes_l

beauty. Or even necessarily because her story is full of blockbuster plot twists.

It's her brain. The HBO original film “Temple Grandin,” directed by Mick Jackson and starring Claire Danes in the title role, does a brilliant and beautiful job of illustrating how her unique brain thinks in pictures. Instant recall of every image you've ever seen is both a blessing and a curse and the movie shows how she learns, with the help of her mother, aunt and teachers, to use her assets, even as she struggles with the limitations that autism imposes on her.

Diagnosed as autistic at the age of four, Temple Grandin was encouraged and sometimes pushed by her devoted mother, depicted here by Julia Ormond, to engage with the world, take a look at it from her distinct point of view and make it a better place. Though doctors predicted she would never speak, she ultimately graduated both high school and college and became a world-renowned animal behaviorist, completely revolutionizing the treatment of livestock in the cattle industry.

She also became one of the most respected advocates for autistic people, giving interviews and doing speaking engagements, writing books and teaching college classes. Not bad for someone who was never supposed to speak, huh? (I'm not really giving away the plot by telling you this, because the film is not about what she does, so much as the way she does it.)

As I watched this movie, I wondered, "Why couldn't this film have come out before 'Rainman?'" Then, at least, parents of autistic children -- and the world at large -- would have more than one popular image of what autism can be.

Claire Danes is amazing; she just disappears into the role of Grandin. Granted, prosthetic teeth are used to subtly change the shape of her face, but she also captures what Grandin has described as her “easily spooked” quality in the skittish way she moves throughout the film. Ormond gives a moving performance as the mother who never flinches in the face of her daughter's disorder, pushing her constantly to expand her comfort zone. David Strathairn, one of my favorite actors, portrays her immensely supportive science teacher, Dr. Carlock, with quiet genius.

The real star of the film, though, is the director, who took what some might have turned into a mundane Lifetime movie-of-the-week and drew a startling and unforgettable portrait of a beautiful mind.

As the parent of an autistic child, I was mildly disappointed to find a couple of things missing in the film. Most of her childhood is absent, as filmmakers chose to focus on how she used her autism, as an adult, to reshape an entire industry. There is a scene that shows her mother relentlessly drilling a four-year-old Grandin on flashcards, but no scene that actually depicts her first words.

Also, Grandin has, in interviews, been very straightforward about the fact that she takes certain medication, including anti-depressants. She began taking these drugs in her 30s and gives them a lot of credit for her current functionality. This is missing from the film, which focuses on her more creative and natural means of calming herself in the face of stress.

The description of Temple that her mother instilled in her, that would later become her motto for autistic people everywhere -- “different, but not less” -- is a moving and simple message that I sincerely hope the world adopts as its view of autism. We may not always understand these special people, but as “Temple Grandin” so brilliantly illustrates, they have so much to offer the world and a unique way of looking at it.

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Temple Grandin

We don't have HBO (boo!), but I saw the trailer and agree that Claire Danes nails the portrayal of Temple Grandin (Emmy for Claire!). I adopted the "Different, But Not Less" motto for a PPP I gave yesterday for a class of FSU undergraduates (SLP majors and ESE majors). I also listed your blog on my Resources page under "Inspiration and Support" :)

Still hoping we can get together sometime when everyone is feeling healthy! Hubby brought home the stomach flu the weekend before Thanksgiving. Poor EJ suffered with it for 10 days and lost nearly 4 lbs.He still likes to say "Mommy, I need a pot" just to get a startled response out of me (and it works every time!)

JD in TLH

Temple Grandin & her HBO Movie

Hello! Again, I found your Temple Grandin post published on MomsLikeMe, where I am a moderator in Nashville. I am an author of a recently published book on autism and reviewed a press copy of HBO's movie. My review here:

http://leisahammett.typepad.com/the_journey_with_grace/2010/02/hbos-temple-grandin-a-review.html

and, my experiences of personal interactions with Grandin and my observations of her evolution:

http://leisahammett.typepad.com/the_journey_with_grace/2010/02/ode-to-the-temple.html

One of the things I learned in the movie that I did not know (assuming this part was not fictionalized and I do not think it was, was that Temple did not begin speaking about her autism publicly (other than to her colleagues) until about 1980. Rainman came out around mid 80s, as I recall. Temple was not yet an established figure. And that's just the way it is in this journey's evolution, as I see it. Just think about the women/families (like Eustace Cutler, Grandin's mother) who suffered from Bruno Bettleheim's ignorant, unsubstantiated but embraced theory of "Refrigerator Mothers" causing their childrens' autism. We each "suffer" some in our own time for the lack of advances, for the misperceptions, etc., within our society--by what we don't yet know, don't yet have. For me the key has been to keep my eye on my own blessings in the moment and the knowledge and the witnessing that others are and will have it better and easier and that my advocacy and other's helped them achieve that rising pinnacle.

In my second post, above, I address where Temple is today on the medication issue. Her stance has also evolved like everything about her.

Nice review. Love your ending. Wish I'd remembered to include that! But it is also my guiding truth on this disability journey and I commend you for grasping it so early in your adventure! Glad to have found your site. Keep on spreading...the GOOD...word. It is defintely there amid the struggles. And people NEED to hear it. Resoundingly!

Namaste.

I wonder if I could sell stomach flu to Hollywood starlets as the hottest new diet? "One injection of SuperFlu and you'll lose six pounds in two days -- guaranteed! A great way to get into red carpet shape for that Oscars appearance!"

Of course, after those two days, you will look like you've been chewed on by rats. And you may not be capable of actually standing on that red carpet. But goodbye unwanted pounds...

Some might question my own sanity in that one of the first things I did after managing to stand up was weigh myself, but there has to be an upside, right?

Both of my babies have had this nasty virus, I've had it, and now Dave has it. Of course, Dave -- in typical man fashion -- was planning to go into the office, even after I told him, "No one wants your germs. Their children don't want your germs. No one wants their children to get your germs so STAY HOME."

Ultimately, though, it was not my advice but the fact that he was incapable of seeing out of both eyes at the same time that sent him to bed.

Luckily, we didn't both get it at the same time. The one thing no one ever really tells you about parenthood -- or maybe they do and childless people just don't listen -- is that there are no days off. NO. DAYS. OFF.

Sick? 104-degree fever and barfing up a lung? Your children don't care. Fish sticks still have to be cooked. Diapers still have to be changed. Babies still have to have bottles warmed at 1 a.m. and 4 a.m. Children still have to go to school in clean, matching clothes. Or at least clean clothes. When Daddy dresses them, "matching" is interpreted very loosely.

But Dave was a superstar this week. I actually got a sick day to lie in bed and groan softly to myself, between rushed trips to the bathroom, while he fed, diapered, entertained, and generally Daddied both kids.

Of course, when I ultimately emerged from my fevered haze, it was to the sound of screaming. As I came down the stairs, Billy was running around the living room in his Pullups screaming "It's wet! It's wet!" (no idea what that's about) while Willow, also screaming, was holding her empty bottle by the nipple and beating it on the coffee table. (You don't need friggin' Baby Signs to interpret that message.)

Poor Dave looked up at me with such a look of weary relief that I fell in love with him all over again. It's nice to be missed.

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I'm a celebrator. While others scoff and roll their eyes at Valentine's Day, I get a secret thrill walking through a grocery store overstocked

celebrate

with candy hearts, teddy bear-shaped balloons and roses wrapped in plastic. I believe in true love and believe it is perfectly reasonable to celebrate it by wearing matching T-shirts, eating a heart-shaped steak and making one another mix tapes.

But the holiday doesn't have to be as well-established as V-day to get me interested. I'll break out the streamers and party hats at the slightest provocation. Flag Day, Earth Day, International Dog Biscuit Appreciation Day (Feb. 23 - save the date!) -- if it were up to me, we would have a special song and an imaginary creature delivering gifts for each one of them.

I'm sure it was because of the way I was brought up. My parents were celebrators. Each of us received a card and a present for every holiday, birthday, special celebration. I have drawers full of cards from my 14th birthday, my high school graduation, the day I got my first apartment (I'm also a saver, the nice way to say "pack rat"), and of course, Valentine's Day, Easter, Halloween, you name it. We made a big deal out of any given opportunity. We decorated the yard and the house for Christmas. We packed our house full of children at every birthday -- when my mom wasn't ferrying a van-load of them to a water park, amusement park or special event.

One of the greatest things about having kids is rediscovering the simple joy of celebrating. Billy comes home from school with special crafts he's made, smeared with cupcake icing singing, "Happy Birthday, Dr. King! Happy Birthday to you! Happy Birthday, Dr. King! We honor you today!" Awesome. A birthday party for Dr. King - why didn't I think of that? (Actually, as it turned out, he got a couple of things muddled up. The cupcakes were for his classmate Luca's birthday, but his heart was in the right place.)

What's the downside? If you don't like the ridiculous pink-and-red commercialism of Valentine's Day, you can always celebrate by writing a letter -- a real letter with a pen and paper -- to someone you love. Or dump Valentine's Day altogether and take a child (or adult) you love somewhere to celebrate Ferris Wheel Day, which also falls on February 14. Or National Organ Donor Day (also Feb. 14), a bit more of a celebratory challenge, I'll grant you, but I would LOVE to hear about your efforts.

February is chock-full of reasons to kick up your heels and bake cupcakes. We've got Tooth Fairy Day (Feb. 28), Pistol Patent Day (Feb. 25), Tell a Fairy Tale Day (Feb. 26) and Polar Bear Day (Feb. 27). How could the satisfaction of eye-rolling possibly compare with the joy of celebrating National Random Acts of Kindness Day (Feb. 17) or the simple pleasure of rewarding yourself on National Chocolate Mint Day (Feb. 19) and Cherry Pie Day (Feb. 20).

In fact, Feb. 20 could become the greatest holiday ever if you celebrated cherry pies, loving your pet and National Hoodie Hoo Day. This last holiday is apparently celebrated by walking outside at noon, raising your hands over your head and shouting "Hoodie Hoo!" at the top of your lungs, in the hopes of chasing away winter. I guess this is in case the whole groundhog thing didn't work out.

Just be aware, if you keep rolling your eyes, expect a visit from me on February 16: "National Do A Grouch a Favor Day." We can join hands and sing a song I made up for "Public Sleeping Day" (Feb. 28) before writing our letters to the Tooth Fairy.

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Celebrating

I am a celebrator too. Especially birthdays, When Wayne & I got married he couldn't understand why I went to all the expense, time & work to pull it all together. I always made a big party every year for Jennifer & Keith and tried to think of everything I could to make it special for them. I told him It brought me such joy to see them happy. I appreciate my mom for making my birthday, Christmas, and holidays special, because that me feel special. It's just apart of loving I think.

Celebrating

I agree! No matter how you do it, taking time out to make a big deal over a special day for the people you love is a way to show them how special they are. I know that Jennifer and Keith appreciated that too and will pass that love on to their kids :-)

Five things I liked this week ...

5. Martha Stewart Baby: Sleepytime

Most parents spend at least half of their waking hours obsessing about their kids' food, poop or sleep. If you have a child on the autism spectrum, you can double that time commitment -- at least. We've been on a sleep-obsessed phase over the last few months. I'm a firm believer in bedtime routines and using music as a wind-down cue. Music always works well as a cue for Billy: He has an "All done" song, a "time to go" song, a "taking turns" song, etc.

We've tried a variety of lullaby CDs to set the mood for bedtime. Most of them are just unbearable after a few hundred listenings. Too cutesy with drive-you-bananas-stick-in-your-head melodies is a common problem -- not what you want before bedtime.

My mother bought Sleepytime as part of a batch on eBay, and it has been our go-to bedtime music ever since. Beautiful modern soft folk-rock from the likes of Allison Krauss, Natalie Merchant and Barenaked Ladies, the songs can bear repeated listening without making you want to throw yourself into moving traffic. In fact, I ripped the CD on to my iPod and have actually listened to it by myself on several occasions.

Until I looked up the details for this review, I hadn't even realized that it was a part of the Martha Stewart Baby collection. This CD is so not what I associate with the woman who did an entire TV episode about ironing table napkins.
Favorite tracks are Krauss's "Baby Mine" and Tuck & Patti's "Takes my Breath Away" (chokes me up every time). You can actually sample the tracks here .

4. Baby Bumblebee

Theoretically, Billy shouldn't be watching any TV, right? Well, we do our best. We limit it to no more than an hour a day, and try to use it as a reward -- for good behavior, accomplishing tasks, etc.

At first, I thought we would be stuck with Thomas the Tank Engine and Mickey Mouse Clubhouse, the educational value of which I find questionable (see my rant against Thomas). But it turns out, he really likes educational DVDs too.

Baby Bumblebee has a series of DVDs that teach vocabulary, question words, and concepts like opposites, numbers and colors. They use real children to teach the concepts -- and these are definitely not trained actors -- and include interactive games and lesson reviews on each DVD. A series of flashcards matches each DVD set, so if you're into flashcards, you can use these to reinforce the concepts. (Billy has about as much interest in being drilled on flashcards as he does in balancing my checkbook, but on that theoretical day when he does develop an interest, we're ready.)

I was overjoyed the day he started showing me "Up and down," demonstrating by standing up and squatting down, "fast and slow," which he shows me by alternately running and walking, "yes and no," nodding and shaking his head. Now if I can get him to stop saying "Visit us next time at baby-bumble-bee-dot-com!"

3. Audible.com
If you have an iPod and long car trips, this can be a lifesaver, particularly if you're trying to limit TV time. Dr. Stanley Greenspan, the creator of our Floortime therapy, strongly recommends audio recordings of stories, because it forces children to use their imaginations to create the pictures to accompany the words they hear.

Audible has a large collection of recorded children's books -- in addition to their volumes of adult bestsellers (I mean fiction and non-fiction for adults, not porn) -- ranging in price from a couple of bucks for a single book to more than $10 for a collection of stories. You can either buy the recordings singly at retail prices, or join their online club and get credits for a certain number of book per month.

Then you download them to your computer where you can either transfer to an iPod (or other mp3 player) or burn to a CD. The whole process was super-simple, and I'm a super-simpleton when it comes to electronics. We joined at the most basic rate ($7.95 per month) and started with a great recording of Dr. Seuss stories, featuring the voices of David Hyde-Pierce and Jason Alexander.

2. Dry rice and beans
This takes the old adage "the best toys don't have batteries" (Is that an old adage? Hmm, now that I think about it, maybe not.) to an extreme. Billy will play with a plastic bucket of rice and dried beans for as long as I will let him. Buried in the dry stuff are tiny toys like dinosaurs and trucks, and he digs them out, reburies them, drives the trucks around. This has -- can you believe?! -- become our substitute for TV when I need 15 minutes to load the dishwasher. Upsides: a lot cleaner than sifting dirt through this fingers; it's cheap; it doesn't make an annoying sound, and you never have to go searching through the house for trip-A batteries.

1. "Up in the Air"
Really liked this film (I got to go to an actual movie!), starring George Clooney as a guy whose job it is to relieve other people of their jobs. He's hired to fly around the country, delivering bad news to employees whose bosses are too scared to do it themselves. I heard Jason Reitman, the director, interviewed on NPR and he talked about how many of the "employees" in the film are real people who were actually recently fired from their jobs. He used their real stories and let them tell them. If I hadn't heard this, I wouldn't have known, because they were really good, really heartbreaking.

I didn't think this was a perfect film the way some reviewers had described it, but I did think it was a beautifully acted and subtly told story. My only big problem with it: The fact that the woman who was supposed to be George Clooney's love interest ever acted aloof -- instead of straddling his wheelie bag in the airport and refusing to let go.

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A roundup of things that bugged me over the past week ... as though anyone cares...

5. Vtech Sit-to-Stand Dancing Tower ($43, Walmart.com)

vtech

Useless. In theory this toy sounded like a good idea to get Willow standing up and moving around. The teddy bear in the middle is supposed to dance in a circle, and there are colored lights that let you play a "follow the leader" game -- theoretically. But when we turned ours on, the teddy bear just jerked spastically and played the same single electronic note over and over again. Willow found it hilarious; her parents did not. (Dave would like me to point out that I put this toy together, as though that might be the source of the problem. I'm not convinced.)

4. The neighbor's dog
Our cat, Biggie, was attacked and is now missing a big chunk from the middle of her tail. In the neighbor's dog's defense, he cannot actually leave his yard, while my moronic cat regularly taunts him from the the top of the fence. So some might say she got a well-deserved lesson. However, this trip to the vet cost me $120, and that dog barks 24/7, so he gets the blame.

3. Sleep training
Willow's reign as "world's best baby" is officially over, as she has been refusing to sleep in her crib. While she was sick and congested, we let her sleep in her car seat, since sleeping upright seemed to help her breathing. And then we let her continue sleeping in her car seat because, well, we already had one problem sleeper at the time (see Winning the Pajama Game), we were really tired and she would sleep for 12 hours in the car seat. I would probably let her sleep in the fireplace if she would sleep 12 hours (not really -- please don't call Child Services.) This weekend, though, Billy was staying with my mom, and so we decided to bite the bullet and get her back in the crib. Oh, the drama! I just about can't take it; the heartbroken faces and sounds she creates make me feel like a heel. But one night of success: She did finally sleep in the crib.

2. Allergies
What is up with Tallahassee? I never used to have allergies and since we moved here in August, I've had red, watery eyes, itchy throat and ears and a constant sniffle. If it weren't for allergy medicine, I don't think I'd make it through the day. (This message brought to you by our friends at Zyrtec.)

chreese

1. Chreese
Nope, that's not a typo. That's what it's called: Chreese.

Say it out load: "Chreese." See, it's supposed to sound like "trees" and look like the word "cheese." Clever ... right? I'm not sure why you would want to associate your cheese with trees, but in their defense, this cheese does taste the most like sawdust of any cheese I've ever tried. (Actually, the link to "trees" is apparently to highlight that all the packaging is biodegradable.)

Billy has been on a dairy-free diet for a while, and so we've been trying various dairy alternatives. We hate soy milk, but love rice milk. He'll eat rice cheese as well. So we thought a dairy-free instant mac-n-cheese product wasn't out of the question. So we picked up Mac-n-Chreese in the New Leaf Market. Billy took one look at it and announced "No more! No more!"

So there you have it: The verdict on Chreese is "No more." The search for dairy-free mac-n-cheese continues. Anyone have any suggestions?

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Dairy free mac n cheese

Have you tried the Soy cheese ( tastes better than it sounds!) available at Publix in the produce section? Buy the wrapped american cheese-like slices and it melts pretty good and tastes almost like the real thing! I bet it would work in a homemade mac and cheese recipe instead of velveeta. Just a thought...

Some days, living in the gaze of my gorgeous children, I really wish that life had a rewind button. Or at least that button on the DVR remote that lets you jump back 30 seconds: "Wait! Ignore that last thing I did! I can do better!"

Yesterday, we were coming out of the McDonald's drive-through where I managed to keep my cursing at the price of two cokes and a small fry under my breath for the most part. Billy gets a treat when he does particularly well at therapy or school, and inevitably, the treats he asks for are "Coke" and "Fry-Fry" (French fries). He could easily say "French fry" at this point but we continue to say "fry fry" in our family because we think it's cute ... and to be honest, half the time I forget that it has a different name. I even once, flustered, asked for "fry fries" at the drive-through.

So we're coming out, stopped at the red light, and I'm juggling my Diet Coke and my cell phone charger. And I see a man out of the corner of my eye, holding a sign and clearly asking for money.

A million things run through my mind at a moment like this, and all of them make me sound a little crazy. I worry that if I start rifling through my purse for money, the light will turn green and I will hold up traffic. I worry -- I kid you not, this goes through my head -- that other cars will think I'm showing off. I worry that I'll get his attention and then find that I don't have any cash. I worry, to a lesser degree, that the person might be dangerous and try to car-jack me. In broad daylight. In front of all these cars that I'm sure are bad-mouthing me for being a self-righteous show-off who holds up traffic and is kind of asking to be car-jacked.

Well, yesterday I came to my senses and realized that I had just spent nearly five bucks on two cokes and a small fry, and this guy might not have anything to eat. This might be one of those moments when I could talk to my kids about giving to others. So I scrounged up a couple of dollars, tapped my horn, and saw out of the corner of my eye that he was walking over.

"Billy," I explained to my son, who was happily stuffing his mouth with fries and slurping on his Coke in the back seat, "this man doesn't have any money for Coke or fry-fries, so why don't we give him some? We've got plenty."

"We've got plenty," he repeated, seeming to agree.

The entire time, I had never really looked at the man, and by that point, he was at my car window. I looked up, into his eyes, and I froze.

He clearly had Down's Syndrome. What was a mentally challenged person doing begging for money in front of McDonald's? I was outraged -- at someone, though I didn't know who. Weren't there people who were supposed to be taking care of him? Wasn't there an agency in charge of this?

But all I did was reach through the car window, hand him two bucks and drive away. After all, the light had turned green and people were starting to blow their horns.

As we drove off, Billy looked back --at the man, I guess -- and said something like, "No coke."

The whole drive home I was edgy and unsettled. There was a time when my greatest fear was that my autistic son might end up unable to care for himself as an adult. It certainly happens, and there are plenty of parents who deal with that nightmare thought every day. Now we're pretty certain that Billy is going to be fine, to be able to communicate normally and catch up with his peers within a couple of years. And even if he were more severely challenged, God forbid, he now has a loving sister and two beautiful cousins who would never, I know, let him end up alone.

I would love to tell you that by the time I got home, I immediately sprang into action and tracked down the relevant agency or homeless shelter and got that man some help. But I didn't.

By the time we got home, I was more concerned about the fact that Billy had emptied his fries all over the back seat, Willow was screaming bloody murder and needed a diaper change and life went on.

In fact, I forgot about him. I forgot about him all afternoon, and all night, and until this morning, when I was emptying the trash and saw the McDonald's bag, I hadn't given him another thought.

I immediately thought of all the things I could have done, a million ways I could have helped and shown my kids that some things are more important than a honking horn or fries in the back seat.

But the morning bedlam of the Broadfeet had already ensued and we were frantically trying to get Billy's breakfast, listening therapy, Floortime and dressing completed before the 8:10 a.m. go-to-school deadline.

After he and Dave were off, I did finally manage to call someone. There is a church across the street from that McDonald's, so I looked up the number and gave them a ring. When I explained what had happened and asked that they keep an eye out for the man, the lady on the phone was very nice. She said she knew just who to call and would see to it that someone got him the help he needed the next time he showed up.

I hung up the phone, relieved. Was I relieved because I believed the man was getting help or because it was now someone else's problem? Hard to say.

I write a lot about autism advocacy and for obvious reasons, Dave and I are very motivated to help kids with challenges get what they need and deserve. But adults with mental challenges need advocates too. They aren't as cute, and they may be harder to help sometimes, but I got a well-needed wake-up call about just what happens when they slip through the cracks of the system.

Comments

Setting an Example

I have often discussed this very thing with other ASD parents; if the statistic that 1/150 kids have ASD is accurate, then how is our society going to cope with the special needs of so many people 20-30 years from now? I worry about EJ b/c he does not have siblings or cousins, just a small, tight-knit group of adults who love him more than life. We are currently changing our will to set up a trust for him and we have also changed some of our retirement goals to include a fund for him that he can access when he turns 25. We still have a 529 plan that we contribute to for his college, but we also recognize that we would be remiss if we didn't set up something to make sure that he will ALWAYS be provided for, financially speaking.

I think one of the most worrisome things about having a child with ASD is that we know that we are not going to be able to kick our baby "out of the nest" when he turns 18 or 21 or ever! Suddenly, our ages and our health habits take on a whole new dimension because it is not just about us getting him to independence at 18; it is about getting him to independence (one day) AND making sure he will always have someone to watch over him when we are no longer able to.

Living long and well

That is such a good point about how our age and health habits take on new significance. David and I have been talking about that same thing. We need to keep ourselves as healthy and active as long as possible so we're there for him as long as he needs us to be.

We're planning to have a financial planning meeting soon too, now that we've got our house-buying out of the way, so hopefully, we can get prepared for the most extreme scenario and know that no matter what, both our kids are cared for. It's a horrible thing to have to consider, but it has to be done, and parents of ASD kids can't afford to wait. It's not just a matter of "Who will take care of our kids if we're gone" but also, "Is that person educated about ASD? Capable of dealing with everything that goes with it? On the same page with us about goals, etc."

Thanks so much for sharing your experience.

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Floortime/DIR is our primary therapy protocol for Billy. "Protocol" makes it sound like something instigated by Jack Bauer at CTU, but the great thing about Floortime is that it's more of a "big picture" view, inside which you can continue with speech therapy, occupational therapy, which we're also doing.

Developed by Dr. Stanley Greenspan, Floortime/DIR therapy (DIR stands for Developmental, Individual differences, Relationship-based) is all about creating moments of joy during which you communicate with your child on their level, following their lead. Rather than try to force them to perform a series of tasks, like stacking blocks or sorting objects, your goal is to get the child to connect with people, to desire to communicate. And you create that desire by following their joy.

For instance, if Billy wants to open and close doors repeatedly, rather than try to stop him from doing that, we open and close doors with him. And when he's comfortable with us playing side-by-side, we take it to the next level, creating a "playful obstruction." Dave created the "Open the latch, Daddy," game, putting his own hand on the door, and requiring Billy to ask him to release it, thereby bringing him into the moment.

A couple of great things happened as a result of adopting the Floortime mindset: We surrendered the frustrating process of trying to get him to stop opening and closing doors (which upset him and us) and we connected with our child. I was amazed at how much fun it was to open and close doors the first time those big blues eyes looked up to me and Billy smiled as if to say, "You like this too? Isn't it great?"

We want to teach him that it's more fun, fulfilling, desirable to be connected to people than it is to be lost in his own world. And over the past few months since we first read Dr. Greenspan's book, Engaging Autism, at the suggestion of our occupational therapist, Kathy Merydith at TMH, we have seen huge strides in Billy's connection to people.

He has started reaching out to other children on a regular basis, wanting to play with them, rather than by himself. Some of his social skills need a little honing, but after all, he's still just three years old.

If he runs into another room in the house, he'll call, "Mama, where are you?" In the past, I wasn't even sure if he thought about me when I wasn't there. He regular takes my hand and demands, "Play castle," meaning he wants me to come with him and play with the fort he got for Christmas. And then a few weeks ago, completely unprompted, he threw his arms around me and said, "I love you, Mama."

Now let me put up a big warning sign here: I can't say that Floortime caused my son to say "I love you." We're doing a lot of things, and also, he's getting older. One of our primary frustrations is trying to figure out what works, what doesn't, what therapy (or lack thereof) is resulting in a particular behavior, either positive or negative. Within our Floortime "big picture," Billy has speech therapy (3 times a week at school and once a week in private clinical setting), occupational therapy (once a week at school, once a week private), therapeutic listening (twice a day, 30 minutes per session), music therapy (once/week) and Kindermusik (www.kindermusik.com, therapy for the whole family!).

When I say these therapies operate within the Floortime big picture, I mean that we make sure our goal in every setting is to encourage his connection to people, create moments of joy, and develop his ability and desire to communicate.

That being said, Floortime works (at least, for us) and it works every time. I know that, because my son looks up at me, joy on his face, and makes some new gain in communication every day. Because we're doing the things he wants to do -- opening doors, playing fort, sifting dry rice through our fingers, riding the roller coaster that Nan got him for Christmas (what kid wouldn't like that?!) or simply running around the yard non-stop screaming, "He's getting away!" -- because we're following his joy, he wants to communicate. As a side note, he's almost completely stopped opening and closing doors, opting instead for more creative play.

The upside to this therapy: you can see almost immediate results, depending on the severity of your child's communication challenges and neurological issues, however subtle. Because Billy is highly functioning and very verbal (though most of his speech is repetitive), we get a lot of immediate reward and feedback from this therapy; I can imagine it would be significantly more frustrating with a non-verbal or non-responsive child. By all accounts it will still work, but the gains may be slower than what we've experienced.

More upsides: you can practice Floortime anywhere, as long as you are engaging your child, following their lead and expanding their communication; and once you learn the basic theory, you can do it yourself (essentially, it's free -- the only "training" we have at the moment is a careful reading of Dr. Greenspan's book), but it's certainly more effective if you also have an OT or other therapist skilled in Floortime who can help coach you during sessions, brainstorm new ideas, etc. Both our OT and speech therapist are Floortime-trained, and we also regularly turn to our virtual friends on the Yahoo! Floortime Group with questions and for support.

There are also a couple of great websites that offer training, online and DVD-based, message boards, documents that can help you with everything from preparing for your IEP meeting to locating a Floortime-trained professional. Floortime.org is the website of the Interdisciplinary Council on Developmental and Learning Disorders, founded by Dr. Greenspan and Dr. Serena Wieder and is really just a wealth of great information. StanleyGreenspan.com also offers courses in child development, a selection of Dr. Greenspan's books, and information on the latest research and articles published.

OK, now the downside: If you follow Dr. Greenspan's guidelines, you'll be doing eight Floortime sessions per day, 20 minutes per session. That's in addition to school, organized therapy, etc. I can't say that we hit that goal every day, or even most days. Also, you're supposed to work toward four play dates with a peer each week. We're not there yet either.

Sometimes the book can be a bit vague about how to accomplish certain goals, like how do you follow the child's lead if he keeps flitting from one activity to the next? How exactly do you know when your child is ready for more imaginative play? When it comes to these kinds of specific answers to some of the vague generalities in the book, I've always found the answer in my kid. And to his credit, Dr. Greenspan says that when in doubt, take a step back and watch your child. What is he doing? Where is his joy?

Our plan is fluid, dynamic and ever-changing. But for the first time in a long time, I feel like everyone on our team (and they're a wonderful group) is working toward a common goal. And at the center of that goal is a beautiful, intelligent and thoroughly fascinating child named Billy.

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