LIFE IS A SPECTRUM
Billy had a week off from Camp Escape last week, so we decided to take a family vacation. Last year, at this time, we chickened out of family vacation, because we just didn't think he would sleep in a strange bed. We had visions of long, screaming sleepless nights that scared us into opting for a STAYCATION. Which turned out great.
We've taken vacations with extended family, so that my mom could sleep with Billy – like our New Year's trip to Disney. But we've never managed to pull off an overnighter with just the four Broadfeet.
But this year, we pulled up our big-boy pants, took a deep breath and headed for Disney World: me, Dave, Billy and Willow.
At first, I wasn't sure how much it sunk in with Billy when I told him we were going to Disney World again. I showed him some pictures and explained that we were going on Tuesday: “Today is Wednesday. On Thursday and Friday, we go to camp. On Saturday, we go to gymnastics. On Sunday we go to church. Monday we will stay home and relax. And Tuesday we go to Disney World!”
Each day, I would tell him what day it was, and he would update this mantra to himself: “On Friday we go to camp, on Saturday we go to gymnastics, On Sunday …” and so on.
For many autistic people, mastering the concept of time can be difficult. This was the very first time I'd seen Billy show real anticipation about an upcoming event. And demonstrate a grasp of days of the week!
He also showed that he had memories of his previous trips, because he talked about the things he wanted to ride – in his own way: “The Teacups, the Crazy Train, The Smaller World, The Dumbo...”
We got an awesome deal on this three-day getaway. First of all, our tickets were comped, thanks to the nice people at Disney. And then Travelocity suggested a hotel deal for us: a two-bedroom villa at Orange Lake Resort (part of the Holiday Inn Vacation Club) for about $120/night (there were some taxes and a $9/day resort fee as well). The catch: we had to go on Tuesday and Wednesday night, but that worked fine for us.
Orange Lake Resort has a huge kids Splash Pool complex, a water slide, an enormous one-foot-deep baby pool with sprinklers, pop fountains, a lazy river ride, a putt-putt course, and a bowling alley.
We didn't actually visit the golf or bowling, because our kids would have spent the rest of their lives at the pop fountains, given the chance.
But Billy did conquer his fear and ride the water slide, which he didn't stop talking about, in wide-eyes wonder, the whole trip: “It goes over your hair!” (His way of saying he got dunked under the water briefly at the end.)
We spent all day Wednesday at Magic Kingdom, mostly in the Fantasyland section, and both kids had an absolute ball. They loved It's a Small World, of course (a friend suggested that this ride is much more fun for adults if you imagine you have a shotgun) and Dumbo.
With our Guest Assistance Pass (available to kids and adults with all kinds of disabilities), we were able to scoot through lines pretty quickly and get to every ride they wanted to ride on that one day. We only had one Cast Member demand to see our Guest Assistance Pass (which he called the “handicapped pass” in a rare moment of Disney non-political correctness) because I guess he couldn't believe our child had any problems. But I have learned – especially after our last fighty trip to Disney – to take this as the compliment it was not intended to be and just get on the bleedin' train.
I didn't take that many photos this trip, because I really wanted to be in the moment with my kids. Too often on any excursion, we spend so much time setting up photo ops that we ruin the fun. And by “we,” I mean, of course, “me.”
We had FUN. The kids were good company. Billy listened, communicated, and didn't tantrum once. He handled all the stimulation with a pretty good humor, only losing it once, on the Pirates of the Caribbean, which I had tried, in vain, to convince my husband was a BAD IDEA. I wish I could feel more triumphant about being right.
One of the most touching things that happened was the way the kids bonded with each other. At ages two and (nearly) five, they don't really run in the same circles, but in many ways, developmentally, they're about at the same level. And in some ways, like communication, Willow is ahead of her brother.
Still, they found delightful ways to play together. With no cousins, grandparents or other adults (other than us, and we're old news) to coddle them, they stuck together like glue. They goofed in the back seat together on the way down to Orlando (when they weren't fighting as violently as is humanly possible when strapped into car seats at arm's length from one another). Once we were at our hotel, there were games involving chasing and hiding and bouncing on the new beds in “their” room (note: Willow did NOT actually end up sleeping in that room with Billy, but it was “theirs” during daylight hours). None of these games did we remotely understand. And all of them were infused with gales of laughter.
We had "circle time" each night as a family, just like we do when we're at home. We thought it would help Billy transition to sleep more easily if he had the same routine on the road -- to the extent possible. And maybe it worked -- he slept through the night both nights in his own room.
And after they went to bed, Dave and I cooked dinner in the condo, which had a full kitchen, sat together on the screened-in balcony to eat it and actually talked to each other. Mostly, we talked about what an awesome vacation we were having, and in hushed tones, used terms like "just like a normal family."
After we'd been home a couple of days, I went into Billy's room one night to tuck him in and found him playing an involved game on his own. He had upturned Willow's doll walker and was placing his dominoes (he LOVES dominoes) in the little trough created by the upside-down plastic toy.
At first, I was irritated. I didn't know why he had taken Willow's toy or why he was jamming in his dominoes inside of it. But before I started cleaning up the “mess,” something stopped me, and I asked him, “Billy, what are you doing?”
Billy stared at his little project for a minute before picking up one of the dominoes and pushing it down the little trough. “He's having a water slide,” he informed me matter-of-factly.
And by God, on second look, it DID look like a water slide! He was imagining his trip and using his dominoes to act it out!
One little line of dominoes was separate from the slide. Out of curiosity, I asked him again, “What are these guys over here doing?”
Billy stared at the line of dominoes for a couple of seconds. “They're ...” it was clear he was searching for a word. Finally, he finished, “They're YAYING.” And went back to his game.
They're “yaying,” cheering for the domino going down the water slide, just like he did for each of the kids that went down the slide ahead of him. He was actually acting out a little drama of his own, with characters that had roles, and it wasn't a script he had learned but a story that came out of his own imagination, based on his own memories.
This is me yaying.
Well, let's start with the fact that Santa has never, to my knowledge, appeared in a Charlie Brown holiday special. Also, Santa is not a pumpkin – and everyone knows that pumpkins are just about the greatest thing on the planet. And all that emphasis on “naughty” and “nice” pretty much takes the fun out of everything.
The reason I prefer the Great Pumpkin: No pressure. Unlike Christmas, Halloween comes with very little pre-determined, expected ritual celebration, and if you do nothing but stay home all night and hand out candy to other kids, it's still considered a success. Likewise, we have never been disappointed on Flag Day, President's Day or Columbus Day. And nobody celebrates Bubble Wrap Appreciation Day (January 31) as well as the Broadfeet.
Last year on Halloween, Billy watched “The Great Pumpkin” while wearing his astronaut Halloween costume, cried in the floor for a little while and then went to bed before the first trick-or-treater arrived. Willow stayed up and wowed all the little goblins who came to our door with her adorable FSU cheerleader outfit.
On the whole, though, holidays are a mixed bag in our house. I'm a celebrator, as I've pointed out here before. I have a pathological need to create the ULTIMATE holiday experience for my kids at every single opportunity. And it has taken me four years to get it through my head that my son just doesn't enjoy all the same things other kids do.
Let me be clear: He is a very happy kid. He enjoys a LOT of things. In fact, he enjoys the heck out of some things to which normally developing children probably wouldn't give a passing thought. Acorns, for instance. He has always loved them, been fascinated by them, and this time of year, they are everywhere. And have I mentioned how much he loves pumpkins?
He does not, though, enjoy endless Christmas present-opening, particularly when accompanied by the obligatory photo opp of Billy holding each aforementioned gift. He would just as soon spend all day playing with the same toys he's played with all year. In fact, he would just as soon spend the day playing with acorns and pumpkins.
He loves Christmas carols. He does not like performing on command. So last year at the school Christmas concert, he happily sat there on the stage, among the other kids in his class, listening to their renditions of “We Wish You A Merry Christmas” and “Rudolph” with a big smile on his face – without uttering a sound. Then he regaled us all with his own concert in the car all the way home.
Another check in the Halloween column: Very few concerts. Kids just get to sing songs about ghosts and pumpkins at school or whenever they feel like it.
Billy loves decorations of all kinds. He doesn't not like staring at expensive Christmas ornaments on a tree for a month without being allowed to touch them. He much prefers Halloween decorations: I keep spooky window gels on the dining room windows at a low enough height that he and Willow can peel them off and re-stick them over and over. I find them on the toilet, TV, fridge, on my coffee cup – wherever they can get them to stick.
And we have pumpkins. Everywhere. Billy uses them as bowling balls in his bowling game. I know that eventually there's going to be some enormous mess to clean up, but in the meantime, he and his sister are having a whale of a time for weeks, and the total cost has been about 5 bucks.
If I focus on the activities he actually enjoys, I can create a positive experience on any day of the year. If I try to push him into situations that I know are difficult for him – well, then, everyone is just going to have to accept that he's not too happy.
We've never managed to make it trick-or-treating, but we're going to give it another shot this year. But if that doesn't work out, no worries. We'll get our groove on come November 12: We totally rock Domino Day.
Yay Great Pumpkin!
I LOVE that movie! Also Halloween. No expectations, just pure fun.
Arbor Day - Most Underated Holiday
As far as I am concerned, all the biggie holidays are over rated. My son will eventually melt down at them all. That's why I like Arbor Day. Nobody melts down on Arbor Day. Plus, while you don't get candy or presents, your house doesn't get egged, you don't puke into your fireman costume hat, and you don't have to wear itchy sweaters.
adorable!
LOVED the video! I share your sentiments about the holidays. I frequently tell people about our son being the ONLY kid I know who will have a meltdown when looking for easter eggs / baskets. It has happened every year so far. I've thought of boycotting holidays alltogether (just cuz of the stress!) but I would miss them terribly!
Chris
Yay!!! Holloween.
Love this. Undoubtedly, this is my children's absolute favorite holiday! He can dress up every day in a different costume under the guise of trying to decide what to be (this goes on for weeks) and he will frequently wear the same one to bed as jammies several nights in a row. When he was in preschool he would wear the costume under his clothing because he didn't want to take it off~ I remember for a while he'd rotate between two costumes and I would wash one while he wore the other... Thank GOD I love garage sales and the after season clearance racks, where I snag costumes for $5 or less!
Thank you S Chick, for the Utube clip as well. It was lovely to see your little guy. He is charming! Plus, I love that Utube has related links or clips following.... I've been listening to a clip about neuroprocessing issues and development in the background here. Very cool!
Halloween Is our Favorite Holiday Too!
Ironically, my daughter LOVES to collect pine cones!
Our kids should be friends... lol
Halloween is my fav fav fav! And Kekito LOVES the costumes- a little TOO much! =) I've never been a big christmas fan- I totally agree about the ornaments, expectations of people, etc... Glad to hear I'm not alone! kekito gets the "Woah, Woah, Woah's" when there's too much going on. Right now pumpkins are an obession at our house! We have decorational ones that WERE supposed to be all over. But now they live on our dining table arranged perfectly around his placemat as though the pumpkins are at dinner theater and K is the main event! lol He and my husband even named the ones with faces- Chewy, Dewey, Screwy, and ...Tony. lol
You had me laughing with
Bubblewrap day! It must be a fun day at the Broadfeet house! (I'm still giggling!)
I loved your little video, too. We haven't bought any pumpkins yet this year, so today's the day! Yay for Halloween!
Wow! I really enjoyed your blog and the content. I'm a new follower who just happened to come across your site while searching twitter for, #blogs and #specialneeds.
I wonder if you would consider being a guest blogger on our site from time-to-time? It would be a tremendous honor and really help us in providing top-notch content. Please let me know if that is something you might consider. If not, I thank you for you consideration and this wonderful post.
Many Blessings,
Craig
Charlie Brown obsession
This post really caught my attention because my 2 1/2 year old who has ASD is in love with the Charlie Brown Halloween special and has been watching it since last Halloween on and off. Anyway, when I asked him what he wanted to be for Halloween, he quickly answered, "Charlie Brown!" His yellow shirt with zigzag design arrived a few days ago in the mail, he tried it on and couldn't stop checking himself out in the mirror. He has worn it for pajamas several times and is just thrilled being Charlie Brown. His nearly 4-year-old sister has decided to forego the fairy costume this year and be Lucy instead...not an easy costume to find...but we did. :) We'll probably make it to about four houses for trick-or-treating, but all the effort will be worth the cute photos. :)
Welcome Great Pumpkin!
@Wendy: Right on. By the way, everyone, I totally recommend Wendy's site, thelocalcook.com, if you want to be truly inspired about what you can do when you decide to eat locally.
@BigDaddy: Yes, we have a fantastic track record with Arbor Day as well. Ditto Administrative Professionals Day and Grandparents Day.
@Chris P-M: Last year, when the concept of Easter Egg hunting was explained and demonstrated to Billy, he went around dutifully picking them up and singing the "Clean up, Clean up" song. Not his favorite holiday experience :-)
@Melody: Yes, YouTube is a godsend in our house! Whenever we're trying to prepare for / introduce a new experience, we try to find videos on YouTube and inevitably there's something: haircuts, bike riding, gymnastics, playing piano. You name it, and you can find it on YouTube. Sometimes, that's not so good. There's also some Thomas the Train-related porno that we've accidentally stumbled upon. Be careful with those "related" videos!
@Cheryl: Ah, gotta love autumn. Billy's getting a fix for his acorn jones every day now :-)
@Jill: LOVE your pumpkin "dinner theater!" We haven't named our pumpkins yet, but I think that's a GREAT idea.
@Ginny: Bubble wrap is one of life's great joys, as far as Billy is concerned! And it's also a great way, our OT tells us, to build hand strength for handling snaps related to dressing oneself.
@Craig: Happy to help out with your great site. Expect an email from me privately within 24 hours.
@Rebecca: WHY didn't I think to dress Billy as Charlie Brown this Halloween??? I already have the astronaut/alien combo for him and his sister now, but he would have loved the CB idea. Plus, it's comfortable and cool. (It's still like 90 degrees around here.) Next year! Looking forward to hearing how your trick or treat goes ... and maybe seeing some pictures?
I Like Pumpkins, Too!
Hi Amanda:
I'm with Billy on this one...I'm not big on Halloween, but I do like pumpkins! I've got photos of my granddaughter with a giant pumpkin on my post today...
Wendy
As usual, there are so many things that I recognize. The sticker decals all over the house, not wanting to do anything on cue (opening presents, posing for pics, singing a song). You're right that there's alot less pressure around the smaller holidays. Just enjoyed a kick-ass Columbus Day!
Life With Our 9
Awesome post! I, too, have a wonderful son with Autism. He has crazy fascinations with things too, Our sons have a lot in common I htink. I have a page on my blog that describes how he affects us as a family. I also have a daughter with severe ADHD and possibly Aspergers. Come visit me at http://lifewithour9.blogspot.com
Total 13 comments
Albert Einstein – who many believe was on the autism spectrum himself – once said, “Imagination is more important than knowledge ...”
Most children don't have to be taught to imagine; play is as natural to them as breathing. They push a car – or a block that they imagine is a car -- along the floor and say "vrroom, vroom" as soon as they can utter a sound. They cuddle baby dolls or pretend to eat or drink from toy cups and saucers. As they play at these things and imagine, they communicate, they connect with people, and they practice life skills.
Imaginative play is typically a challenge for kids on the autism spectrum. When most kids were starting to pretend, Billy was putting together the wooden track on his train table or linking up the trains and driving them along the track. When he played with blocks, his favorite game was "dominoes," in which he lined the blocks up one after another and knocked them down.
Before we knew better, we'd try to force him to act out stories with us. We bought herds of plastic Little People, toy soldiers, Disney characters, astronauts, Thomas trains and ark-loads of plastic animals. We have two doll houses, three barns, an entire plastic amusement park, a medieval fort, a Mars rover, a space shuttle, an elaborate toy kitchen, two play houses, and yes, a Noah's ark.
The lesson we learned: You cannot buy a child's imagination. At least, not Billy's.
The second lesson we learned: We can buy Willow's imagination. She jumps on any new toy like a duck on a June bug.
Following the Floortime model of “following his joy,” we invested, instead, many hours lining up both trains and blocks. Slowly – and I mean slooooooowly – things started to change.
At first, we were able to add a few minor “playful obstructions,” little challenges that complicate the game: Something is blocking the train track; the dominoes travel over and under objects, etc.
Billy still does a good bit of echolalia, repeating lines from books and TV shows. The next development step he made in imaginative play was to act out, in small ways, lines from books or TV shows. One day, several characters had a “jumping contest.” On another, an astronaut had a race with a pig. I couldn't have been happier if he'd composed a symphony.
So this summer I've made a point to spend a certain amount of time each day “practicing” imaginative play. Scheduling it might seem to defeat the purpose of following his joy, but there's method in my madness.
In the morning, I'll listen to whatever lines he's repeating. Then while he's napping, I'll try to set up the scene of that book or TV show with his toys.
For instance, one morning, he was stuck on “Where the Wild Things Are,” understandable since we'd read that as a bedtime story the night before.
While he was napping, I rounded up the characters from the story – or the closest I could approximate in our menagerie of plastic pets – and laid them out on the dining room table. Note: I moved this activity out of his play room so that he wouldn't be distracted by other toys while we were busy with our imagining.
I found one of his Little People to be Max and a taller female doll to be the mom. I found a dinosaur, a Shrek and a couple of other “wild things” and lined them up as well. I stole the bed from the dollhouse and dug out the toilet-paper-roll-boat we'd made in craft time the day before. Then I got a plate from the toy kitchen and put a plastic chicken leg on it, because as every parent knows, the story begins and ends with Max's dinner.
Billy surveyed all this with a suspicious eye. He suspected there was a lesson in it somewhere. “No circle time,” he informed me -- “circle time” is the way he describes any particularly boring lesson-like activity.
“No circle time,” I agreed. “This is about Max going to see the Wild Things.”
His eyes lit up. “Wild things!”
So I proceeded to tell the story with the characters I had laid out. I stopped to let him fill in some of he lines. His favorites: When the mother calls Max “wild thing!” and when Max threatens, “I'll eat you up!”
When we got to the part where “a forest grew” in Max's room, I felt a bump down at my thigh. Willow was holding a small house plant. I cannot say for certain that she was suggesting we use it for the forest, but I'm so used to things coming so easily to her (see her "Jurassic BooBoo" video for a masterpiece of imaginative play), that I didn't even blink at a 15-month-old making this leap. “Good idea,” I simply told her, and added it to the scene.
After a couple of rounds of Wild Things, Billy was getting a bit bored. At the next pause in my recitation, to my surprise, he changed the story.
“We have to find Saturn!” he told me and flew Max around the table.
“Saturn?” Then I realized that he was switching to his favorite episode of Little Einsteins. “No, Billy,” I corrected him, “This is Where the Wild Things Are.”
I tried to get him to bring Max back so that he could get in the little boat and sail to the window sill where Shrek and the plastic alligator were waiting. Completely forgetting that the point was for him to imagine something NEW, I was slightly irritated that my carefully laid out world wasn't getting used.
He sighed and came back to the table. We walked Max through his paces, sailing him back home to where his dinner was waiting for him. “And ...?” I prompted Billy.
He picked up the plastic chicken leg and bonked the mother on the head with it. The doll fell over. “She's dead,” he informed me, and hopped on his scooter and pushed off. I tried not to take this plot twist too personally.
Willow picked up the Mama doll, gave her a little kiss -- “Mmwah!” -- and put her in the bed. “Seepy (sleepy),” she said, pulling up the covers. She certainly is.
I learned an important lesson: Let Billy do the reciting. If he takes one look at the Wild Things set-up and wants to act out the Little Einsteins with Shrek and the dinosaur driving the Rocket, that's great.
I've gotten a little better at play time over the weeks. We used the toy barn and animals to act out the story Click, Clack, Moo. We used his Thomas trains and Little People to pretend The Little Engine That Could. And we've acted out Noah's ark ... with Batman.
And we made a Little Einsteins “golden pyramid” out of cardboard that Billy loved as much as any store-bought toy. He immediately swam all his Finding Nemo characters in and around it.
In fact, we find ourselves in a new development stage. While not inventing completely new stories yet, Billy is mixing and matching his favorites joyfully. A cow might say, “I think I can, I think I can” and a train might travel to the land of the Wild Things. Batman moves in an out of diverse roles with the ease of a plastic Lawrence Olivier.
On Monday we're going to make totem poles out of cardboard tubes, inspired by another favorite Einsteins episode. I wonder what Batman will make of those...
pretend play
From Amanda on Imaginative Play
pretend play
From Amanda on Hope
Total 4 comments
Today Billy staged a race between a small plastic pig from his toy farm and a tractor. It went on for quite some time. During this race, which went around and around the dining room table, he hummed the "William Tell Overture" (the Lone Ranger song). The pig won -- which might have had something to do with the fact that the tractor was pulling a trailer carrying an astronaut and Linny from the Wonder Pets -- but that's not the point of the story.
Billy is really starting to explore his imagination. He's starting to make up his own games and tell stories with new endings -- in his own way.
Many of you have been on this journey with us since I started this blog -- and some before that. You know already that we're practicing Floortime therapy, which encourages us to follow the joy of our child. Imaginary play is highly encouraged by this philosophy of autism therapy, because it encourages not only communication, but also problem-solving and thinking more abstractly.
Billy is getting it. He's making progress.
He's still a pretty concrete thinker. He can memorize anything – and I mean anything – that has a name or a number or a specific concrete label. He's not yet four and he has an encyclopedic knowledge of road machinery.
So tell me how a kid who can identify a “steel wheel soil compacter” at 50 yards is incapable of knowing when he needs the bathroom. He's messing with me. I'm telling you that he could use the potty if he wanted to, if it didn't amuse him so much to see me unravel at the seams.
But I guess knowing when he needs to go to the potty – or telling you what color a carrot is, if there's not a carrot in front of him – is still hard. Telling you what he did earlier in the day or yesterday, understanding those vague concepts of time, is next to impossible ... for now.
It's like he lives absolutely in the moment, completely immersed in whatever or whoever he's with. He's not worried about what's going to happen tomorrow, and he's not bothered by what happened yesterday. He is totally with that pig as he crosses the finish line.
I could learn a lot from him.
A pig, astronaut and tractor
From Amanda Broadfoot
Total 2 comments
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.
Games as Autism Therapy
Billy Ball Tag
From Amanda
Total 3 comments
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.
Yaying Here, Too!
Tuesday July 12 2011 05:27:36 pm
Ashley
That's one of the best feelings in the world when you realize they're using their imaginations! Yay, yay, yay! Sounds like you guys had a wonderful vacation! I want to take our kids to Disney so badly now that we know about the golden ticket. I love seeing our kids bond and I can't wait to make some fun family memories! =)
Tuesday July 12 2011 05:30:13 pm
Rebecca C.
YAY to you guys for giving Disney another try! So happy to hear it was such a success! And I love the water-slide-acting-out-at-home story. Awesome! We're considering a day at Disney later this year. It's so good to hear some tips about making it a great experience.
Tuesday July 12 2011 06:02:34 pm
web
Awww, what a wonderful story! I'm so glad it worked out so well.
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Tuesday July 12 2011 06:11:19 pm
DeeAnn Lancaster
I'm glad you had a good time. LOVE the dominoes story. Yay for Billy! :)
What a Fantastic Vacation!
Wednesday July 13 2011 01:52:50 am
Cheryl D.
I'm so glad you took advantage of the comped tickets! It sounds like you had an absolute blast! Yay!
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Tuesday October 11 2011 09:37:12 pm
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Awww, what a wonderful story! I'm so glad it worked out so well. Best wishes to you.
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Monday October 24 2011 02:48:24 pm
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Sounds like you guys had a wonderful vacation. Awesome! We're considering a day at Disney later this year
Saturday December 10 2011 09:13:27 am
ATs
Glad you all had a good time, that's what vacation is all about :)
Total 8 comments