LIFE IS A SPECTRUM

There was a time, not too long ago, when Billy never asked a question. NEVER. Then, around the age of 3, he started SOMETIMES wondering about stuff that was missing: “Where’s Mama?” or “Where’s Daddy?” or more likely “Where’s Thomas and Percy and Gordon and Rheneas and…?” And another year passed.

I watched other parents roll their eyes as their toddlers badgered them with questions in the grocery store: What is that? What is that? What is THAT? But WHAT. IS. THAT?!

I wasn’t sure if I’d ever hear that kind of passionate curiosity from Billy.

Asking questions can be tough for autistic kids. To ask someone else a question, you have to first be aware they are in the room. Second, you have to understand that they have information you need. And then you need to be able to verbalize your need for information in the appropriate form. It took us several years to make our way through steps one and two.

And I can still remember the moment, after years of speech and ABA therapy, when Billy asked the first question that showed real curiosity. He was in the bathroom, looking at a “magazine” (Toys R Us catalog). Then he pointed at a picture and asked, “What are they doing?”

The floodgates were opened. (Considering the location, maybe that’s an unfortunate choice of phrase on my part. Still, you know what I mean …)

Questions remain difficult. Sometimes they’re quirky and frequently oddly phrased. Sometimes he wants information that I simply do not have. Neither does any other human being on the planet Earth. His curiosity, now unbridled, runs the gamut of its own spectrum. But I take each question, however difficult, as seriously as possible and give him the best answer of which I’m capable:

BILLY: Can I watch Berenstain Bears for one hundred minutes?

ME: No, but you can watch TV for 10 minutes.

BILLY: Is brown angry?

ME: That’s a good question. (Is it? I don’t know, but I’m buying myself time.) Brown is not a very happy color, it must be said.

BILLY: Who was the man on “The Small World?” (We rode “The Small World” 5 times at Disney last summer, and unlike my son, I do not have perfect recall of everyone who rode with us.)

ME: Sorry. I don’t remember. If we see him again, we’ll ask.

BILLY: Can I have one hundred M&Ms?

ME: You can have ONE M&M when you sit down nicely for homework.

BILLY: Why is homework? WHY?

ME: Homework helps us learn new things.

BILLY: Can I have a gun?

ME: No.

lemur8

Question: Are these pets? Answer: NO.

BILLY: Can I have a lemur?

ME: No.

BILLY: Can I have one hundred lemurs?

ME: Definitely not.

BILLY: What are YOU feeling?

ME: A lot of things. Love, a little anxiety, humor – that means something is funny – and happiness.

BILLY: Can we go see Colin Powell?

ME: Sure, buddy. After homework. (Thank you, YouTube.)

scary_road

It can be a scary road.

I like to write about Billy's breakthroughs. I love to share our joy when he seems to meet one more challenge that his autism presents … and to try to illustrate how, when he does make progress, he still does that in an autistic way – and that's a beautiful thing. We've undoubtedly been blessed with some beautiful breakthroughs this year.

But it's not all beautiful. And it's certainly not all breakthroughs. Far from it.

It's really hard for me to write about the rough stuff. I struggle with the ethics of sharing his hardest moments. I debate whether talking about Billy's autistic challenges might give people outside our “special needs circle” the wrong impression of autism. After all, there's enough histrionic screeching about “autism epidemics” and such in the press.

But I'm not the press. And I do not speak for the entire community of parents of autistic kids. I speak for my child – when he's not able to do that for himself.

Which brings me to this week. We came back from our glorious vacation, experienced several communication breakthroughs – a couple of which I blogged about here.

And then Billy got sick.

Just a plain old summer cold with fever and sore throat. But for an autistic child who is still making the connection between cause and effect in terms of his own body, this is a very frightening things. In the middle of the night, when he could sleep, he would wake up screaming, “What is HAPPENING to me?”

At least he can ask that now. But I'll be honest: That's one of the few functional things he's been able to say in the past few days. Mostly, we've heard non-stop scripting, crying and, inexplicably, the occasional fire engine sound. (FYI, it's eerie how realistically he can emulate that sound. And that's not something you want to wake to, coming through your baby monitor at 2 a.m.)

It's depressing on a well-rested day to see even temporary regression. But go a couple of nights with no sleep, struggling to calm your terrified, sick child, and it's the recipe for a pretty black mood.

However, last night was better. We discovered that he had an ulcer on his tongue (probably caused by the fever) and once we treated that, he slept a lot better. So did I.

Now I can look at things a lot more practically. This is temporary. The weird, wacky, wonderful road of progress along the spectrum is definitely not a straight route. It takes strange turns. It can trip you up. Sometimes it may be hard to tell if you're getting anywhere.

But as the late, great Buddy Hackett once told me (remind me to tell you THAT odd story one day), “When you get to my age, sweetheart, you realize that the journey is the destination.”

So let's keep moving, OK? If you let me lean on you this week, I promise to stop and pick you up when you need a lift.

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

Sorry to Hear that Billy Is Sick

I hope he feels better soon!

I wish the journey was always going forward, but it doesn't always! With my daughter, she sometimes goes into reverse even when she isn't sick! It's very discouraging!

Mama Said, Mama Said

My mom always sings, "Mama said there'd be days like this. There'd be days like this, mama said." I don't know if she had these kinda days in mind and sometimes I wanna smack something when she sings it, but nevertheless here we are. Sorry you guys have had a rough week. There's not many words of wisdom I can offer that you haven't already heard. Sending happy thoughts, prayers, and virtual hugs your way! Oh, and I can't wait to hear the Buddy Hackett story! =)

Snippets 'N Stuff

I have never heard of an ulcer on the tongue. Ouch!
I hope Billy feels better soon and YOU get some sleep.

Total 3 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

Billy has become really interested in feelings lately. "Mama, how do you FEEL?" is a frequent question.

feelingschart

And he squints his big blue eyes and seems to really concentrate as I give my answer.

He seems dubious of simple emotions lately: happy, sad, silly and tired no longer cut it.

So I've tried to introduce slightly more complex emotions like frustrated, peaceful, confused, etc.

Which brings us to ...

INT. BILLY'S ROOM - NIGHT

It's bedtime. We've just tucked in, had a final story and he has said his prayers.

BILLY: Mama, what are you feeling please?

ME: (thinking about it) I feel peaceful. That's a quiet kind of happy that's good for bedtime.

He squints his eyes as though he doesn't believe me.

ME: And hungry. I have to go have my dinner now. How do YOU feel?

He considers this for a moment, staring thoughtfully at the ceiling. Then his eyes return to mine.

BILLY: I'm concerned.

ME: Concerned? That's a big word. Do you have a problem?

BILLY: Yes.

ME: Tell me about it. What are you concerned about?

BILLY: (emphatically) Mascara.

A beat.

ME: Mascara? Why are you concerned about mascara? Do you not know what it is? Do you not understand what it's for?

Another beat. He considers.

BILLY: Yes.

ME: Well. Mascara. It goes on ladies' eyelashes to make them ... um, darker and longer ... it's kind of like ... paint?

Billy's look has evolved from concerned to what I would call "alarmed."

ME: It's dress-up. Let's just leave it at that. No cause for concern, OK? Absolutely nothing to worry about with mascara.

Then I kiss him on the head and turn out the light.

BILLY: (in the dark) Mama? Are you peaceful?

ME: Yes I am.

Camp11_BillyBubbles

This kid NEVER tires of bubbles.

This time last year, I was a crazy person. I didn't realize it, but I was.

I was at home full-time with my four-year-old autistic son and my one-year-old wanna-be Tazmanian Deviless, and I pre-planned every moment of each day in 15-minute intervals. I am not even exaggerating. I wish.

Three weeks into this road map to the nut house, I was actually half-praying to get sick, so that I would have an excuse to go to bed and not sing “5 Little Ducks” again. I was convinced that my children hated me and that my failures amused them.

Things definitely got better once I loosened the reigns a little bit and allowed everyone the occasional half-hour Dora break. But still, I looked on with envy at the parents happily packing their kids off to camp at the science museum or the children's theater or local parks department. Or even those parents that just let their kids spend all day in the back yard without worrying whether they were learning or not. No one had warned them about the dangers of "regression."

FYI, my parents never worried about regression over the summer either. In fact, I can't even remember much about my parents being THERE during the summer. I know they were; somehow we got fed, bathed and put to bed. But summer was spent riding my bike around the neighborhood, playing in backyard forts, digging holes in stuff and generally, avoiding adult intervention at all costs.

Anyway, it's not that "normal" camps wouldn't accept Billy. But in the case of most camps geared toward normally developing children, with staff trained to handle aforementioned normally developing children, I get the impression that they consider the day a success if no one calls 911. As long as everyone's smiling most of the time, job done.

And if I were them, I would feel the same way.

Camp11_Billyruns

I wanted Billy to continue to learn, at his level, throughout the summer. I wanted him to have the chance to work on those areas we've identified as challenges – social skills, expressive language, emotional control, independent work time – but I also wanted him to enjoy himself. Really enjoy himself.

Rather than Camp Stims-A-Lot where he'd be allowed to wander around aimlessly, lost in his own world, so long as he wasn't hurting anyone, I wanted him to be challenged. At the same time, I wanted him to have the opportunity to engage in those activities in which he really excels.

I don't ask for much.

As it turns out, my extremely high expectations are not impossible to meet.

This year, for the first time, Billy's behavior therapy group, BMC Southeast, launched a special summer program, Camp Escape, for elementary- and middle-school-aged kids. During the first three-week session, their theme is “Planes, Trains, Automobiles and Carriages.” The second session will have a “Legends and Fairy Tales” theme, while the final session, running two weeks is all about “Games and Sports.”

The Camp Escape staff are ABA specialists, with the director, Dr. Dawn Bailey, BCBA-D, being a Billy specialist extraordinaire. So far this week, every day in which I've been there, there has been a 1:1 ratio of staff to kids, and they're committed to never having a greater than 1:3 ratio throughout the summer. Because of this strong staff ratio, each child's day can be tailor-made, to some degree, to fit their individual needs, interests and challenges.

Camp11_Billysmiles

Since Billy started working with the wonderful people at BMC about a year ago, he's made remarkable progress. I'm a firm believer that no single intervention has ever been enough for Billy – he has been blessed with a multi-faceted and committed team of speech, occupational, and behavior therapists – as well as wonderful teachers and aides – but the therapists at BMC have been a part of his school day, as well as his home life. Ms. Elyse, his private therapist, has come to church with us and helped us get a haircut. And every time she and/or Dr. Bailey has been involved in some challenge we've encountered along the spectrum, they offered up ideas and the situation has significantly improved.

A year ago, Billy wasn't potty-trained. His functional language was limited. He would eat about three things. He had a great deal of difficulty transitioning from one activity to another, and he rarely played with other children – or even seemed to care whether they were there or not.

On his second day of camp, he apparently approached a new friend, called him by name, and said, “Come play with me!” When the kid in question didn't immediately jump at the opportunity, Billy guided him over to his newly discovered wonder: Zhu Zhu Pets.

The campers' days have been full of music and dance, outside games, crafts, water play, developmental play – all with an eye toward encouraging social interaction, better communication and the kind of learning that happens when they don't even realize it. As Dr. Bailey said to me at the beginning of the summer, “I don't want this to be Camp Therapy.” And it's not.

That being said, at the end of every day, I get an in-depth one-on-one report from Dr. Bailey about Billy's day, the parts of it he enjoyed most, the moments during which he had challenges and how those challenges were approached/handled. A picture choice chart, for instance, has eliminated aimless wandering during free play time. His use of pronouns, I'm told, has been improving steadily. And today he had a full day that was essentially meltdown-free!

Camp11_Billywins

Billy took this trophy to bed with him tonight.

And yesterday, Billy won a trophy for his expertise at “Train, Train, Car” (“Duck, Duck, Goose”). I'm not even sure how one actually wins at “Duck, Duck, Goose,” but the award has joined his Bash and Dash trophy on the mantlepiece nonetheless.

But the greatest reward so far, without a doubt, has been the image of him greeting a new friend with excitement and actually asking him to come play with him. A year ago, I was not sure if that moment would ever come, and if I'd been able to choose one goal for the whole summer, that would have been it. So as far as I'm concerned, this camp has already been TOTALLY worth every penny.

Speaking of our pennies, Camp Escape is $300 per week for a full 8:30 – 3:30 day (after care can be arranged for $75/week.) Session 1 runs June 13 – July 1; Session 2 is July 11 – July 29 and the final session runs August 1 – August 12. They can also arrange half-days, if someone's schedule doesn't permit a full-day program.

The location is at Good Samaritan United Methodist Church and you can find out more at www.bmcsoutheast. There's still room for more campers, if you're in the Tallahassee area, and Billy and I would LOVE to have you join our beautiful little group!

But keep in mind that the competition for “Duck, Duck, Goose” is fierce.

Reader Comments

So the part of me that loves billy almost cried at the part about him asking a friend to play. The part of me that is training to be a therapist says you should JUMP on that train... talk to his parents set up play dates! (Maybe with a behavioral aide or atleast one of each kids parents) and let me know how it goes :)

Camp LuckyDuck

@Cheryl: They work really hard to keep prices affordable, and decided early on that the camp wouldn't be about making money but providing a much-needed service to our community. I can't speak highly enough about the committed individuals involved in Camp Escape and BMC in general. They really really love what they do and their dedication to the kids shows every day ... even at the end of the day :-) My dream would be to do some fundraising over the upcoming year to create some scholarships for families for whom $300/week is still way out of reach.

@Randi: Are you working with BMC through the school system? They aren't allowed to do any "marketing" of the camp through their school system connections, which sucks, because I think there are a lot of people who may not have gotten the message. I passed along flyers to all the parents I could think of who might be interested, but hopefully, by next year, more people will know about this excellent camp!

what?!

We work with BMC and never heard about this camp. Sounds amazing and I am so glad it is working out for Billy......and mommy! Going to check it out soon!

monster beats

It sounds like a dream camp!

Wow!

What a great camp! I can't believe how reasonably priced it is. My daughter is going to a normie camp and it's a lot more money! And there will be about 2 counselors for about 15 kids! Here, a social skills class for an hour or an hour and a half runs at about $80. How can they do this camp so cheaply?

Wow

It sounds like a dream camp! So glad Billy is enjoying it & you can have a few moments free of the 5 Little Ducks this summer!

Camp Escape!

@Noelle: You can contact Dr. Bailey about the camp directly at bmccamp@bmcsoutheast.com. I know she'd be happy to talk to you about the camp and give you any additional information. There is a flyer at the BMC website too: www.bmcsoutheast.com.

@Erika: I'm SO glad Jared is having a positive experience too! The people involved are just so committed to each child having fun and learning that it makes me wish I could spend all day with them too ... especially since tomorrow is Water Day :-) FYI, Billy identified Jared in a picture today and said, "Jared is very good at swords." So I'm not sure exactly WHAT they were playing today!

GREAT Camp

I am loving this camp, and Jared has been remarkably positive about the experience. Last summer, he complained (loudly) every morning about going to Camp Noisy, which was a terrible fit for him. Here, he gets lots of one-on-one attention AND quiet time when he needs it.

Total 9 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