LIFE IS A SPECTRUM

Billy and his baby sister are thick as thieves these days ...

Reader Comments

Security text:*

Enter both words below, with or without a space.
The letters are not case-sensitive.
Can't read this? Try another

Snippets 'N Stuff

Sweet. :)

Total 1 comments

Diz0711_PopFountains_Billster

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.

Diz0711_Teacups

Still lovin' those Teacups!

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.

Diz_PopFountain2

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.

 

diz_castleshot

The obligatory "castle in the background" shot. The excitement is palpable!

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?”

diz_billyplaysslide

Can you spot the "yayers?" FYI, down below is The Dumbo, The Smaller World and The Crazy Train.

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.

Reader Comments

What a Fantastic Vacation!

I'm so glad you took advantage of the comped tickets! It sounds like you had an absolute blast! Yay!

Snippets 'N Stuff

I'm glad you had a good time. LOVE the dominoes story. Yay for Billy! :)

Awww, what a wonderful story! I'm so glad it worked out so well.

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.

Yaying Here, Too!

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! =)

Total 5 comments

Pinocchio_nose

Billy, what are you doing?!

I'm pinching Willow's head!

Billy, WHAT are you doing?!

I feed the TV a sandwich!

Billy, WHAT ARE YOU DOING?!

I'M WASHING THE TOILET PAPER!!

Ask a stupid question ... get an honest answer. That's one of the few “upsides” of autism: honesty.

There are others. My fellow autism parent/blogger Big Daddy has written about the fact that his 13-year-old son will still happily show affection and hold his hand while walking down the street. Other parents have mentioned the imperviousness to peer pressure and the dedication to subjects about which they feel passionate.

Where Billy is concerned we can also count an amazing memory, perfect pitch, perfect rhythm, and a scary-good sense of balance among his strengths; whether they can all be attributed to autism is impossible to say. After all, whether or not he was autistic, he might have still been a good singer, a good gymnast, or a spelling bee champ. But autism has impressed its indelible stamp on my son, so each of his favorite activities are enjoyed in a slightly different way because of his beautiful, unique brain.

I'm in no way, of course, trying to minimize the downsides, the challenges, the often heartbreaking difficulties faced by autistic people. But those are the things that usually get the press and attention, so I thought I'd mention, ever so quickly, a few positive things. And honesty is one of them.

By contrast, my two-year-old daughter is already discovering her inner sociopath. She can lie till the cows come home.

Lately, she and Billy have been physically fighting like cats and dogs. Usually over toys. And he'll come running, screaming from the other room, with her literally nipping at his heels like some kind of rabid badger. “No pinching! No pinching!” he screams as he tries to keep his Lightning McQueen car out of her grasp.

One morning, I sat them both down on the bed and ordered them to watch TV quietly while I finished getting ready in my bathroom. Poking my head back out of the bathroom a few moments later, I caught Willow, with her fingers in pre-pinch mode, ready to strike at Billy any second.

Her eyes met mine. Her hand froze. Then she wiggled her little fingers in the air. “I tickle, Mama.” Yeah, sure you do. Sure you do.

Because I now know how things look when they don't develop normally, I've come to appreciate, believe it or not, this deviousness in my daughter. I'll never have to worry whether she will wear all her feelings and thoughts openly on her face, making her a target for the con artists and bullies in the world. I'll never have to wonder whether she can understand the concept of lying at all and have to explain to her one day that everyone doesn't always tell her the truth.

Of course, I hope this tendency to fib is something she grows out of for the most part as she gets a little older – or at the very least, uses sparingly.

Maybe her brother will have a good influence on her.

Reader Comments

monster beats

Katie tries to lie, sometimes, and it is hilarious. She can't keep it going for 2 seconds. She instantly begins to laugh. She does try, though. Ben, isn't a great liar either, typical kid that he is. He will do it, but then come to me a few minutes later, seemingly guilt-ridden, and needing to tell me the truth..ha. Fine by me.

Great SIte

Great Site. Found you thru SITS. I have a sweet 13 y.o. boy on the spectrum. He has recently discovered lying. But he sucks at it LOL
He still holds my hand and runs to greet me at the door after work for my welcome home hug.

So glad I found your site!!! I LOVE IT! My son also has Autism (one psychologist thinks it's Aspergers), although he's already trying to do the lying thing. And the stealing.... pretty frequently, I might add. It's driving us nuts!
Very excited to read more!
Kelsi
Come say hi at modernmomredefined.blogspot.com

It really is interesting to watch how different kids learn about and test the concept of lying. Both my boys enjoy giving lying a whirl, but neither one has learned to do it with a straight face. I like to think they'll grow up believing I can read their minds rather than their tell-tale smirks. And if they never learn to lie convincingly, I'll never have to worry about them blowing all their hard-earned coin on poker.

I love Billy's innocence and Willow's street smarts. I hope you're right in that they'll learn from each other.

I too have a terrible time lying...I feel really guilty, and can't keep a straight face...

I also hate being lied to...

Hugs,
Wendy

Pants on Fire

My NT daughter is not a cumpulsive liar like her daddy. Yet. But she is better at it than her big brother. On ocassion, Griffin will attempt to fib, but as soon as confronted, he confesses. He would make a terrible criminal.

What a Great Topic!

I should address this issue! LOL

I can't really get a read on Audrey yet. She's so godawful about answering questions or relating past events that it's impossible to tell if she's lying or just bungling the story. If it has something to do with scoring chocolate, I have a feeling that she'll learn quick.

Total 11 comments

I've been out of touch again because we've been on Spring Break. It wasn't that we didn't have Internet access; the condo where we stayed had wireless high-speed Internet. It wasn't that I purposely took a break from electronics in an effort to reconnect on a more personal level with my family – as much as I'd like to claim that as the reason. In fact, the reason I have not been blogging is #1 on my list of “A few things Mama learned during Spring Break 2011 ...”

SB_BillySmiles_beach

1. You have to be able to hear yourself think in order to write.

Who would have thought? I had all these wild and crazy ideas about our vacation at the beach ... before we actually left. As I packed swimsuits and running shoes and sunblock, I imagined myself starting each day with a meditative walk on the beach, followed by a trip to the spa downstairs where I would work out for a full hour before hitting the sauna. In my mind's eye, I topped off this indulgence in self-care with a full body massage and pedicure. Which brings us to ...

2. After 24 hours with my kids at the beach, I want to work out like a hole in the head.

And as for the sauna: HA! I was lucky to have time for a shower. The closest I got to a pedicure was rubbing my feet on the bottom of the pool while carrying a child on my back.

But it was phenomenal week. Last year at this time, we had a “stay-cation” for Spring Break. We just didn't feel that Billy was ready for sleeping overnight in a strange place. That was a great holiday too; we just stayed in town and “played tourists” in our own city.

This year, though, we took the next step: an actual week-long vacation. Number 3 on my list is something I've stated before ...

3. A year can make a world of difference in the life of a child, any child.

Please remember that -- and help me remember it -- when we get a bit down about the current situation.

We take so many things for granted now that were practically unthinkable a year ago: eating out in (certain) restaurants without meltdown, the kids (mostly) sleeping through the night, Billy being potty-trained, Billy enjoying the company of other children. It's important to look back and realize that, even if it seems slow sometimes, progress is being made. And speaking of other kids ...

SB_BillyPrances

Beach sand = yummy tactile input :-)

4. Sometimes when we back off for a little while, nudge our little birds out of the nest, they will make breakthroughs seemingly on their own.

I sat in rapt wonder at a playground this past week as Billy played for a good half-hour with another little boy. They threw a ball back and forth, kicked it (sort of) to one another, chattered away in their own little ways, laughed and had a big sporty little boy-time. He didn't need me to provide appropriate social prompts, encourage him to take turns or guide his behavior in any way.

Of course, this wasn't actually a miracle. It just looks that way sometimes. His devoted team of speech therapists, teachers, aides, behavior therapists, occupational therapists, and family members have been working towards this goal for YEARS.

So team, take a bow -- alongside Billy. Your hard work has resulted in one happy four-year-old enjoying a great day at the playground and making a new friend.

5. Vacation is no time for flashcards.

Willow_partyoutfit

Of course, that didn't stop me from packing them. I broke out the sequencing cards one morning (3-step cards to help him learn “first, second, last” storytelling), and asked Billy about one simple picture story depicting a boy getting a book off the shelf, “Billy, what does the boy want to do next?” Instead of picking out the picture of the little boy reading, Billy replied, “Go to the beach.” And I got the message.

As a mom, I have to work on “going with the flow” a little bit. It's tough. If you read this blog regularly (and thank you, if you do!), I'm a control freak. I readily admit it. I spend so much of my time trying to be three steps ahead of every meltdown that I forget to relax and let my kids be kids sometimes. I used to have “Every moment can be a learning moment,” as my mantra, but my new mantra is, “Every moment doesn't HAVE to be a learning moment.” Chill out, mom.

6. It's Willow's vacation too.

Wait a minute, I have another kid? Sometimes, it still kinda surprises me, because so much of our planning goes into giving Billy the support he needs in any situation that I forget that Willow has "special needs" too. Even her birthday party gets planned around Billy's schedule, challenges and preferences. She's NEVER managed to blow out her own birthday candles without him getting there first.

Condo_party

Cool digs, huh? Thanks, sis!

Willow's few needs are for a moment of individual attention each day, a handful of birthday cake, and then she's good to go. The rest of the time, she's happy to make it all about her “Bee-dah” too.

7. Billy is pretty funny.

This isn't a revelation, but I was constantly reminded over the past week. One day, he was passing a stone-shaped speaker by the condo pool, he stopped pointed, and said, “I think that's ROCK music!” Then he nearly fell in the pool he was laughing so hard at his own joke. It was a pretty good joke.

8. Autism can still surprise me. And hurt. And confuse us.

pirate_sloaniebear

Are these the "captains" that have so terrified Billy? Possibly.

pirate_booboo2

Out of nowhere, Billy became incredibly fearful in the middle of our vacation. He suddenly balled up in a corner, with his fingers in his ears, screaming, “I'm so scared!” He stayed that way, off and on, for most of the next 24 hours. When we coaxed him into talking to us, the most we could get out of him was, “I'm scared of captains.” He had seen some cartoon about pirates, and we had been to a restaurant called “Peg-legged Pete's,” neither of which seemed particularly scary.

All we could figure was, like his fear of kangaroos, the fear of “captains” really means something else, some mystery made up of sensory overload, unpredictable schedule and general weariness born of several days of non-stop activity. All we can do sometimes is sit close to them, talk softly and wait it out.

Or, in Dave's case, promise Billy that if we see any captains, we'll “kick them in the peg leg and laugh.” I don't know what sort of effect this is going to have on Billy's ability to empathize with disabled mariners, but as Dave pointed out, peg legs are a bit thin on the ground these days. And it did make Billy laugh.

 

9. Sometimes autism's surprises are really good ones. For instance, even a naval air museum is fun, exciting and hilarious when viewed through Billy's eyes.

SB_Billy_Cockpit

Let's just say that on a really really good day, when I'm in a great mood, I'm faintly ambivalent about naval aviation. The idea of spending an afternoon touring various types of aircraft is likely to send me to my bed with the vapors.

DSC_0420

Until I visited one with Billy. He went completely monkey-poop over the National Naval Aviation Museum. He danced around under the giant planes and literally trembled with excitement. He hugged the end of one plane or jet or whatever you call it and said, “I hug you! I love you, big jet!” Then he tried to insist that I close the ceiling bubbly thing over the driver's seat so that “Billy can fly. Billy can FLY!” Dear lord. I don't think so. The sight of an old bi-plane made him fall on the floor in hysterical giggles. Really?!

The museum was free and had an awesome kids play area with a kiddie aircraft carrier, complete with slides (Are there slides on an aircraft carrier? I'd like to think so.) and little helicopter that the kids could sit in. Willow quickly took command of the ship and bossed around children twice her age. I think she has a scary affinity for the military.

So it was a great Spring Break, despite the fact that I never darkened the doors of the spa or the gym and my toes still look like they've been mauled by beavers. As usual, I learned at least as much about myself and what I need to work on as what I learned about Billy. Which brings me to the end of this year's list ...

10. I should really stop making lists.

Who am I kidding? That's never gonna happen.

Reader Comments

Welcome back to Blogland, Amanda! It sounds like you guys had a fun vacation!

"on a really really good day, when I'm in a great mood, I'm faintly ambivalent about naval aviation." Best. Line. Ever. I feel the same way! A couple of summers ago while visiting my brother, he decided it would be a good idea to tour the Diefenbunker, which was built during the Cold War to house the Canadian government if there were a nuclear attack...it is now a museum. Let's just say the kids faked interest as long as they could...

I'm a control freak too, but I almost never make lists...

Wendy

I like your lists!

Especially when they're like this! Loved this post - keep 'em coming!

So much better than our Spring break...

Sounds like a great vacation! I agree with your husband...I think peg-legged pirates should be the one prejudice that Billy is allowed. So awesome that Billy has made such great progress! That spontaneous play date is like a dream come true!

I needed to read this

#3 really hit me between the eyes. Right now I'm so wrapped up in the "what we can't do's" that I can't even fathom the future. Thanks for giving me hope!!!

Oh..and my little one has the weirdest fear of cows (cartoon and real). Makes every Ipad game with animals fun. And Chik fil A is on the banned list right now! ha! Glad we not alone in fears of things that have no rational explanation.

Sounds Like a Great Vacation!

It sounds like you had a great time! I'm so glad. Billy's progress is also fantastic!

Lists

A year can make a huge difference. Last year I couldn't stop making lists. This year - not so much.

All things considered, sounds like a great vacation was had by all.

Looks like a really great trip! Beautiful pictures. Have any tips/tricks for the car ride there and back? I think that's our big hang-up. Our kids (both of them) do not do well for after about 40 minutes. We do fine once we're there, but good grief it has to be a great place we're going to make it worth the hours in the car!

I enjoyed this post... I have a daughter who is a list maker and used to be a control freak. That has been adjusted since baby #1 came and she's the one that is due with baby #2 so her grip on control has slipped significantly. My favorite line in this is " toes still look like they've been mauled by beavers." LOL. I'm with you.

Total 9 comments

25000pyramid

Bad hair! The Bee Gees! A calendar of 1979

... to bring you an episode of the $25,000 Pyramid. Remember that game show?

Well, apparently Willow was Dick Clark in another life, because she remembers it too. Wait, Dick Clark is still alive. How old is that man anyway? Like 150?!

But I digress ... So Willow cuddles up in bed with me for a few minutes each morning, and she tells me things. Usually, it's just words she knows. Lately, though, she's been categorizing them. She'll sit on my chest and and recite, "Pink ... bwack ...white ...yewwoh ... orange..." and then wait.

My job is to respond, "Colors!"

Then she'll do another one: "Carrots ... peas ... ice cream ..."

"Food!" I'll guess, and if I get it wrong, she keeps going:

"Fry-fries (French fries)...eat-dog (hot dog) ..."

And I've got it: "Plastic food in your toy kitchen!"

MandiBOoboo_S

Bingo. Then she starts again: "Mama ... Daddy ... Bee-dah (brother) ...Nan..." and so on.

She loves this game. I feel like that at 22 months, categorizing words like this is a sign of unadulterated genius, but since I've never seen a normally developing child acquire language, this is probably totally normal. Everything she says seems like magic to me.

But this morning she stumped me. After we went through "Animals," "Flying stuff" and "Shapes," she came out with this list:

"Five ... car...Tar-Brown (Charlie Brown) ...eight ...Corny-corn (unicorn) ... Tar-Brown..."

Any thoughts?

Reader Comments

Best TV Show Ever

I really appreciate all the votes in favor of Willow's genius. I've decided that her last mysterious category was her list of the elements in the best TV show ever. She has developed an affinity for Charlie Brown second only to her brother's passion for the blockhead, and her unicorn is never left out of any game. Plus, she loves counting stuff more (The Count was a good shout!) more than anything else. So a show in which two Charlie Browns and a unicorn got together to count stuff would be BEST.SHOW.EVER!

@BigDaddy: Some seriously bad things HAVE been done to that unicorn. We will say no more.

@Ashley: I know what you mean. I spent about three years in search of a "label" (Dx) for Billy, and now I find myself in a place where the only label I care about where my kids are concerned is that they're MINE :-) Love both of them and their unique brains.

@Maura: Yes, indeedy: "Yewwoh" is just about my favorite word. Also, "Wiwwoh," which both of my kids say for "Willow." I will kinda miss it when they can both say Ls properly.

@Jenny and @Kristina: I have been told by many a speech therapists that girls chatter earlier, in general, than boys. It all starts to level out in elementary school, but typically, little girls learn language faster, because our brains are wired for communication. Now Billy's has been obviously been more delayed than most, but I thought it was interesting that there is such a known difference between boys/girls.

Your daughter is a total genius! My 23-month-old started saying mama and dada at the typical age, but then stopped. Then he started just grunting and pointing. He has now progressed to incessant babbling of many different single-syllables, but mostly he'll just work on one at a time over and over, with his voice raised, lowered or enunciated at certain points for emphasis. He is supposedly a "normally developing child"...

Things that rhyme?

(and yes, I know Five Car, Charlie Brown and Unicorn don't really rhyme... But she *is* only two years old)

Yewwoh

In my book, Willow gets the "genius" vote!

How much does your heart melt every time she says "Yewwoh"? Each time Ollie says, "Mama, will you pway Wegos wif me?" I drop everything, because how could I ever say no to a sentence like that?

Henry learned how to pronounce his "L"s in September, the week he started kindergarten. Next stop: learning to pronounce "th".

Snippets 'N Stuff

Not a clue! Chances are you'll figure it out someday :) My daughter is pretty good at figuring out Cody's puzzles when I cannot. Sometimes it takes team effort! Good luck and keep enjoying her!

Maybe it's a new recipe. As I recall, the unicorn was in a stew recently. That recipe may have needed a little more roughage.

My thoughts are that I just want to squish those adorable cheeks!! She is too cute. I love that she wants to play games. I'm continually surprised by what my daughter does/says. I can't tell if it's because she's a girl, a 2nd baby, or NT, or all of the above but she keeps me on my toes!

Sounds like a genius to me!

Total 14 comments

Subscribe to this blog!

...or grab my button!

Lifeisaspectrum.com button

BUY THIS BOOK!
(Billy and I are in it.)

Tags

Mon Tue Wed Thu Fri Sat Sun
1 2 3 4 5 6 7
8 9 10 11 12 13 14
15 16 17 18 19 20 21
22 23 24 25 26 27 28
29 30 31