LIFE IS A SPECTRUM
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.
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.
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! =)
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.
Awww, what a wonderful story! I'm so glad it worked out so well.
Snippets 'N Stuff
I'm glad you had a good time. LOVE the dominoes story. Yay for Billy! :)
What a Fantastic Vacation!
I'm so glad you took advantage of the comped tickets! It sounds like you had an absolute blast! Yay!
pellet
Awww, what a wonderful story! I'm so glad it worked out so well. Best wishes to you.
wordpress themes
Sounds like you guys had a wonderful vacation. Awesome! We're considering a day at Disney later this year
Glad you all had a good time, that's what vacation is all about :)
Total 8 comments
Billy has become really interested in feelings lately. "Mama, how do you FEEL?" is a frequent question.
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.
What a Sweetie!
Billy sounds like he's doing great! You must be so proud!
So funny and sweet
What a cutie-pie! I can't imagine having to explain mascara. So many things we do sound pretty ridiculous when you try to describe them :)
Feelings
Aw, that is so cute he put so much thought into mascara! It's great he's learning so much about feelings. I swear, half the kids in my son's 3rd grade class were never taught a lesson in feelings!
Mascara
Mascara concerns me too. But not as much as the drug that makes your eyelashes grow like weeds.
That is so sweet. They really keep us on our toes! I never know what might come out of their mouths next. =)
Snippets 'N Stuff
Mascara? I wonder what brought that on? Such interesting minds our children have!
Total 6 comments
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.
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.
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!
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.
I need to find the information for this camp immediately! Please, please, please share. I am glad Billy is enjoying it :)
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.
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!
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!
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?
monster beats
It sounds like a dream 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!
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!
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 :)
Total 9 comments
I feel soooooooooo old. Yes, I'm turning 40 on Saturday, but it feels like 400. I can't remember what it feels like to sleep 60 straight minutes in a row, because the kids, and then both of us, have been sick for a week and a half now. Willow finally went back to school on Friday, and then this morning, Billy got a better-late-than-never start on his school day.
As usual, he found being sick scary, particularly in the middle of the night. Every time he woke up coughing, he would start screaming and run to our room. “I'm so sick!” he would tell us, and then ask, “Can I feel better?”
In fact, despite his fear and illness, he did an awful lot of very good communicating this week. He woke up Wednesday morning by projecting vomiting all over his bed and then repeating the act on me. “Can I have a towel?” he asked each time.
About the third day of his sickness, Dave pointed out, “You know, I haven't heard any echolalia in the last few days.” Echolalia is the repeating of scripts from TV shows and books or even conversations. Usually, Billy still does a lot of that.
When I went in to ask him if he was ready to get up in the morning, instead of giving me a few angry lines from what he calls Math Frogs Go to the Moon he actually asked me, “Can I wait a little while? Can I rest?” I was as shocked as I would have been if he'd suddenly asked me what mortgage rates were down to these days.
Within a few days, though, it was clear that he was saying almost everything in the form of a question. This from a kid who up until a few months ago, never asked questions. Now it was one question after another:
“Mama, can you leave Willow alone?” (His way of asking me to tell Willow to leave HIM alone.)
“Where is our Maglev?” (His way of showing me a video of the French bullet train on the iPad.)
“Mama, can the earth and moon resemble a double planet system?” (His way of telling me, for the 400th time, that the Earth and moon resemble a double planet system. Thank you, Moon in Your Room CD!)
He would kill at Jeopardy where you have to answer in the form of a question – if the categories were the following: “Willow leaving me alone,” “YouTube videos of Maglevs,” “The phases of the moon,” and “Willow not touching my iPad.”
By the way, I have never understood the point of Jeopardy's little twist of answering in the form of a question. It's just stupid. I love Jeopardy, but counting it against someone if they don't answer in the form of a question is like having a game of super-nerd Mother May I:
"It's true that Yuzuru Hiraga was the Japanese naval architect noted for work on innovative warships such as the cruiser Yubari and Yamato for the Imperial Japanese Navy, but you didn't say, 'WHO is Yuzuru Hiraga.' You lose."
During his bedridden time the past week, he has also been obsessively watching his new Watch Me Learn DVDs, which model social behavior by depicting kids in a variety of settings playing games, eating together, sharing craft supplies, etc.
When he started feeling better he actually walked over to me at my desk and asked, "Mama, what are you doing?"
ME: I'm playing a stupid computer game. (In my defense, I was sick too.)
BILLY: Mama, can I play a stupid computer game too?
ME: Sure!
So I pulled him up in my lap and showed him how to play Word Whomp, which he was so unimpressed with that he then informed me ...
BILLY: OK, now it's time to clean up!
This morning, Billy finally got so bored with all my fussing over him and dosing him with medicines and checking his temperature, that at about 5 a.m., he posed his Final Jeopardy question to me: “Mama, can you go away?”
He was in my bed at the time. And yep, I left it to him.
When Billy sleeps, we all win.
eye opening
Thank you for this blog. It is very eye opening. Thank you for sharing.
I play that stupid computer game, too
Why is it so flippin' addictive with those stupid mocking little...um...what are those? Beavers? Groundhogs? Whatever.
I love the Jeopardy phrasing. That is cute. (Even though it is a dumb rule and it especially ticks me off when my hubby claims victory just because I didn't ask the darn question. Um, I mean, so I've heard from where we do our fabulous and exciting activities that do not include nerdy trivia games. Mmhmm.)
So glad to hear you guys are on the mend! Hope you have a fantastic 40th birthday!! May there be no snot, vomit, or poop! =)
Tears and Cheers!
Got tears reading this post. Sorry you all are sick, but WOW on the communication factor. Get chills just thinking about it!
Snippets 'N Stuff
You are a crack up. "Super nerd Mother May I"? I LOVE, LOVE, LOVE it!
That's so funny! My daughter was sick over the last few days. She behaves so much more typically when she's sick! She's much more flexible and less prone to crying or tantrums! It never makes any sense whatsoever!
So interesting that his speech seemed to get better and his echolalia lessened while he was sick. Hope he's feeling better!
Happy 40!!
Happy birthday, baby!!!!
I just discovered you. So glad I did. I'll be back, probably (since this is the way I function) starting at the beginning and reading everything. So if you get random comments on your blog in chronological order over the next few days, that would be me.
Great communicating
I find that Moe does a really good job communicating when he's sick too. Through the tears and whining, he'll sign perfectly, or spontaneously request something. It's like he's too weak to fight it :)
So proud of Billy! I love the moments when we see progress, and can get some sleep.
Total 9 comments
INT. Master Bedroom. Morning. VERY. EARLY. MORNING.
Despite evidence to the contrary, this is not the aftermath of a natural disaster. It is – or once was – a tastefully decorated master bedroom. Now we can barely make out the outline of a bed beneath the mounds of dirty laundry, bath toys, baby bottles (yes, we allowed Willow a bottle again this week), half-filled sippy cups, wadded up tissues and half-empty bottles of children's Tylenol and Ibuprofen.
Four limp figures sprawl on the king-sized bed: two adults (sort of) and two children. One by one, they cough.
BILLY: Daddy has a cough.
(Billy coughs)
BILLY (cont.): Billy has a cough.
ME: Say, “I have a cough.”
BILLY: Mama has a cough.
ME: No, you have a cough.
(I cough.)
ME: And yes, I have a cough too.
(I take his hand and pat his own chest with it.)
ME: “I have a cough ...” (I use his hand to point at Dave.) He has a cough. (Point at me.) You have a cough. (point at Willow) She has a cough.”
DAVE: I just love these little family learning moments.
CLOSE ON
ME as I narrow my eyes at him suspiciously and swig directly from my personal bottle of Tylenol cold medicine.
WILLOW: (clinks the medicine bottle with her bottle) Cheers!
Broadfeet
Are those the infamous "Broadfeet" in the photo? If so, who snapped the picture?
Awwww...I feel bad 'cause I'm laughing but it's still sad. The exchange between adults sounds so familiar! haha. And the "cheers." Our kids probably make onlookers think we're alcoholics the way they "cheers" everything. Hope you guys get well soon!
Wow, you really have no off switch woman.
Sorry you're all sick! Hopefully you'll be feeling better soon!
Feel better! I don't know which is worse...everyone having it at once or taking turns so the family is sick for weeks on end. At least you don't have to waste your energy trying to get the kids to cover their coughs.
Cute even when you're sick
Sorry you are all sick, but this was adorable.
Cheers!
'Cheers' to Tylenol Cold & Flu! Hilarious post! Hope everyone is on the mend.
Total 7 comments
As of a couple of weeks ago, Billy has developed a fascination for maps. His favorite is the map of the United States of America, and he quickly memorized all the states. The laminated map you'll see in the video above was once on the wall, but after repeatedly picking it up off the floor and rehanging it, I finally just let him keep it on the floor.
He lays on top of it, puts his eyeball practically right on top of his favorite states -- "Texas, Okla-HOHM-ah, Tennessee, and Ha-WHAH-eeeeee" -- for some reason.
Let's keep in mind that he still hasn't developed the communication skills to tell me where we ate lunch today ... at least, not yet. But he can name all 50 states and locate them on the map, which is more than I can do. (FYI, he can't read the names yet ... at least, I don't think he can.) And he's started on the countries of the globe.
Autism and memory are fascinating to me. Some kids like to memorize the names of every dinosaur known to man; others like to memorize dates or license plates or can easily memorize the TV guide, seemingly at a glance. One fascinating autistic child whose dad I've met online can tell you one what day of the week you were born instantly, just by knowing your birthdate.
Too often these remarkable talents are dismissed as "splinter skills," a somewhat pejorative term, in my opinion. Aren't all amazing talents "splinter skills?" Just because you aren't equally great at everything, that doesn't mean that the strengths and talents you have shouldn't be recognized as such.
Billy digs maps -- at least, at the moment -- as well as planets and satellites. He memorizes everything the GPS system says -- to the point we have to turn it off or drive ourselves crazy. I can imagine him in about 20 years, filling a date's ears with factoids about the Cassini-Huygens orbiter/probe. Or reciting the directions to her house like a living, breathing GPS system.
Look at it this way: At least they'll never get lost.
BOYCOTT AMERICAN WOMEN
Why American men should boycott American women
http://boycottamericanwomen.blogspot.com/
I am an American man, and I have decided to boycott American women. In a nutshell, American women are the most likely to cheat on you, to divorce you, to get fat, to steal half of your money in the divorce courts, don’t know how to cook or clean, don’t want to have children, etc. Therefore, what intelligent man would want to get involved with American women?
American women are generally immature, selfish, extremely arrogant and self-centered, mentally unstable, irresponsible, and highly unchaste. The behavior of most American women is utterly disgusting, to say the least.
This blog is my attempt to explain why I feel American women are inferior to foreign women (non-American women), and why American men should boycott American women, and date/marry only foreign (non-American) women.
BOYCOTT AMERICAN WOMEN!
John Rambo Really Needs to Get Laid
But on another topic, great post, Amanda! It's true! Our kids have amazing memories. My daughter was once in a play and memorized her lines after reading the script once! This was not long after she turned 5! It's just crazy!
Oh I love Billy's voice :) I love hearing all these kids talk :) I think his new skill is amazing!
American Woman!
There's some wonderful irony in the fact that Mr. Rambo made his post here, on a site written by an American woman married to a "foreign" man. Also, within his post, Mr. Rambo has inadvertently said a whole lot about why any woman would want to take him to "divorce court" and "not want to have children" with him. So I'm gonna let it stand, rather than delete it. And I think Cheryl pretty much said it all in her summation of Mr. Rambo's biggest problem :-)
Anyway, I love the story about your daughter and the script, Cheryl! I'm hoping that Billy, too, will get involved with drama, once his functional language increases a bit more and he's ever-so-slightly better at following directions (kind of important in drama), because he's certainly good at memorizing scripts!
Thanks for the feedback, guys.
We have maps taped all up and down our hall at home~ looks like a home schoolers paradise! LOL We use maps to cross-reference our hikes. Okay, I use them. But, every now and then I can get Matt to listen as I explain, "We live here and we hiked here. See how close the trail is to our house! Do you think we could walk to the trail?" Or, "Look how much of our neighborhood is shaded in now! We really are learning our area." Or, "Grandma lives here and we live here. That's why we drive I-80. See I-80? It's almost a straight line to Grandma's house."
Yup
Hello. I am commenting to you from 10 years in your future. It's pretty good here.
Griffin's map is still on his wall. He somehow messed up Lynn's birthday when we met. First time ever. I think it was all her fur and big feet that threw him off.
He's amazing
Talent is talent - I don't care if you have other disabilities or not. Billy is brilliant! When my cousin, who we now know has Asperger's, was a toddler he was obsessed with certain letters and numbers. I was convinced that he would someday earn a Nobel Prize for some theory using those letters and numbers. Still am!
I remember being fascinated with a map puzzle of the U.S. that we had when I was about 6...I'm pretty sure I wouldn't have been able to locate all the states on the map without being able to read the names! Billy's pretty impressive!
Hugs,
Wendy
That is really impressive! (Your son, not John-who-needs-to-get-laid. :)
You American women (and all western women, white women) are mentally ill and hopeless. Have fun growing old alone with your 10 cats, losers.
franklin
Stop waiting until the weekend, when you can party or let loose, until summer, spring, fall or winter, until you find the right person and get married, until you die, until your born again, to decide that there is no better time than right now to be happy.Happiness is a journey, not a destination.So love like you have never been hurt, work like you don't need the money, and dance like no one's watching.wearing<strong> <a href="http://www.franklinmarshalloutlet.org">franklin and marshall</a> </strong> when we want to anywhere please stop waiting.
Love it! My brother memorized all the stats for every football player in the NFL as a kid. At 25 months, my son M has learned the alphabet and has spelled a few things that make my husband and I wonder if he's beginning to read. Yes, he can't communicate many things to me, but communication is communication and if right now that means the ABCs then that's amazing to us and we love it :-)
<h1><a href="http://www.mymichaelkorsoutlets.com/ "> michael kors outlet </a></h1> http://www.mymichaelkorsoutlets.com/ This is a very nice article, perhaps the best I’ve ever seen Their Causes, and of course everyone’s opinion is not the same, and this c
<h1><a href="http://www.mymichaelkorsoutlets.com/ "> michael kors outlet </a></h1> http://www.mymichaelkorsoutlets.com/
This is a very nice article, perhaps the best I’ve ever seen Their Causes, and of course everyone’s opinion is not the same, and this can only represent my personal opinion, but it is very important to me I like it. Of course, this is very grateful of the efforts for it. Thank you! <h1><a href="http://www.cheapuggbootsbay.com/ "> cheap ugg boots</a></h1> http://www.cheapuggbootsbay.com/
Total 13 comments
I've written before about Billy's abiding love of Tina Fey. His fascination for pictures of the funny lady continues, unabated.
Today, though, we will meet a few other favorite members of Billy's Hollywood posse ...
INT. MINI-VAN - AFTERNOON
MOVING
Each day, on the drive home from school, we have a kind of conversation about Billy's day. Autistic kids, as a general rule, have difficulty with concepts like time and storytelling (that isn't scripted) so we've been working on this ... with varying levels of success.
ME: Hey champ, did you have a good day at school?
BILLY: Yes, good day at school.
(This response is pretty much scripted by this point, so I try to take the conversation a step further.)
ME: What did you do at school today?
BILLY: Played with friends.
(Darn. He managed to pull out another scripted answer. OK, let's try this again ...)
ME: Billy, WHO did you play with at school today?
(Pause. He's thinking. This is good. Ideally, this means he's thinking about the question, recalling the day and formulating an answer.)
BILLY: David Hyde Pierce.
ME: David -- WHAT?
BILLY: No, not David Hyde Pierce. It's Jason Alexander!
ME: Billy, I don't think you played with Jason Alexander today.
BILLY: No, not Jason Alexander. Joan Allen!
ME: Let's think about this, Billy. Joan Allen is an actress. She lives in California. She starred in the movie THE BOURNE ULTIMATUM. I don't think she was in Ms. Jade's class today.
BILLY: Hi, my name is Joan Allen!
ME: (sigh.) So, Joan, got any explanation for doing the movie DEATH RACE?
*
I was thoroughly flummoxed till I found out that during nap time -- an activity in which Billy refuses to participate -- Billy listens to stories on CD with headphones. One of those CDs features the If You Give a Mouse... stories, and guess who the narrators are?
Yep: David Hyde Pierce, Jason Alexander and Joan Allen.
So that conversation, though it unfolded in a non-traditional format, was actually a success. In his own way, he DID "play" with them!
Ha! Billy. I love that little guy. Smart as a whip, that one.
Happy Friday, Amanda!
Hilarious! That kiddo keeps you guessing:)
I love this! He's such a smart kid :)
I like his taste in friends.
Snippets 'N Stuff
Aren't you glad you didn't have to go all weekend with that puzzle spinning around in your head? :)
Billy's Brilliant!
I was thinking, gee, Amanda's watching a lot of old TV shows with her son? Billy is so funny! I can see my son doing the same thing soon. Cute story.
So Funny
I love it !!!!!! I love that right when you think that kids are getting totally off track they surprise you with the news that they do in fact know what they are talking about.
That's awesome! Sounds like the beginning of a great joke..."So David Hyde Pierce walks into a bar with Jason Alexander and Joan Allen..." =)
Billy hangs with a better crowd than I do!
Playa
What makes you so sure he didn't play with David, Jason and Joan? I had a play date with Charlie Sheen yesterday and he is a lot busier than Billy's alleged playmates these days.
Phew! For a second there I thought they maybe stocked his classroom with Star Magazine.
See, I get the celebrity thing so much more than elevators, dinosaurs, U.S. Presidents, or whatever else our kids are commonly into. I could totally bond with Billy over that. What did he think of Scarlett Johansen's dress at the Oscars?
I love David and Jason...don't know much about Joan. I think it's great that they're reading kids' stories!
Hugs,
Wendy
Total 13 comments
As I write this, it's the middle of the night – about 2 a.m. – and I can't sleep because my nose is stuffed up and I have this annoying scratchy cough. We've been through several restless nights now, with one child or the other unable to sleep due to this nasty cold. Now I have it.
I knew three nights ago that I was going to catch this thing. Willow straddled my chest at 2 a.m., nose running, unable to sleep, and after counting my eyes, ears, nose and mouth, she leaned her face very close to mine, took a deep breath ... and sneezed.
Ah, well. It's a mom's job to inhale the germs, gather them in our arms and walk the floor with them all night long, if necessary.
I wish I'd known about the headache a few nights ago. I should have given Willow Tylenol, in addition to the Vick's Vapor Rub. She couldn't tell me that her head hurt, but if my symptoms are anything to go by, she had a killer of a headache.
If Billy wakes up, should I give him Tylenol? I could ask him, “Does your head hurt?” But then again, I can't really rely on his answers for accuracy. Half the time, he repeats whatever words I put his mouth: "Does your head hurt?" Billy: "Head hurt."
If I get sick first, I have a better idea how they're feeling when it's their turn. I know what to watch for, what to medicate, how to empathize. I understand why they're cranky and sleepless and angry, because I've been there.
It's late at night and my mind is wandering; I'm tired and I've just taken cold medicine, and I'm wishing that autism was something I could catch for a few days. I wonder what it would be like to walk in Billy's shoes, live in his world, feel what he feels even for just a few hours.
Maybe if I could think with his brain for a day or two, I could learn to speak his language. And better teach him how to communicate in mine. Maybe I would understand his fear of kangaroos and feel the pain he feels at certain sounds.
And food: Is it the smell or sight or texture of some things that makes him physically sick? I would gladly be sick like him to feel what he feels and just be able to tell him, like I do when he has a cold, “I know. Here, this will make it better.”
I would love to understand his anger. He is a joyful child, and sometimes his anger surprises and confuses me. It seems to come from nowhere, but I know that's not true. Inside his mysterious and beautiful mind, there is a hidden source of his unhappiness, and I'd like to climb inside there, hunt it down, and deal with it, like I try to deal with the sadnesses and angers and unhappiness that I can see.
But most of all, I would like to feel his joy. When he closes his eyes, scoops sand between his fingers, lifts his hands to the sky and belly laughs as the grains filter back to the ground, I would like to inhale that happiness. I would like to dream what he dreams and catch a little bit of the giddiness that bubbles up in him so strongly that he wakes up literally in the middle of singing a song.
I can't walk in shoes. The best I can hope for is to stay close, walk alongside him, so that should he need me, all he has to do is reach out and take my hand.
You're right
You know you're right--and I never thought of it that way. It really is easier to know how to treat a child when you can already relate to how they feel.
But your post made me think, too, of all the mothers who would rather endure a certain pain or sickness than sit by while their kids suffer. I hope I'm not putting words in your mouth, because you didn't say that directly. It's just I caught an undercurrent of that sentiment in this piece.
Hang in there, Amanda. I imagine you ease suffering every day you're their mother.
Catching
While she never "caught it", my daughter, who is 100% NT, always had / has a special bond with her older autistic brother. When they were younger, she seemed to instinctively know what he needed or what he was trying to express when we were bewildered. That 6th sense, so to speak, has sort of gone away as she has gotten older. But it still pops up every now and again.
I hope this comment gets posted because the last few I tried got eaten and thown into space.
What a great post. I can relate. Katie always answers "I don't know" whenever I ask her if she feels sick or if something hurts and then gets incredibly frustrated if I try to push for a real answer. She is really HF, yet still doesn't have the ability to tell me what's wrong, physically. I also wish I knew why she gets so angry and sad. I wish more than anything I knew so that I could really help. Being there for them, as close as we can get, is so important, I agree.
Sorry you're sick. I know what you mean about not knowing what they're experiencing. Sadly, we usually don't until (in the case of being sick) we get it and then understand.
"I can't walk in shoes. The best I can hope for is to stay close, walk alongside him, so that should he need me, all he has to do is reach out and take my hand."<<--Love that.
Beedah's 6th sense
I've always said that Willow will be Billy's best teacher/friend/guardian as they grow up. She adores her Beedah (brother) and makes every step with him. In time, she will be a big help to him and to you in understanding him, I'm sure. You are an outstanding mother.....and writer.
FWIW
GL always denies pain. Even post-surgery, he insisted he had no pain. But when he is angry for no apparent reason, it's amazing how often Tylenol improves things. I figure when he's showing signs of distress of unknown origin, the recommended dose of Tylenol won't do any harm, and might help.
I'd do anything, ANYTHING to get inside my kid's head. Just for five minutes. Just so I could understand.
Guilty
I recently had a similar experience with catching a cold after the kids. It was a nasty one and I felt terrible for being so frustrated when the kids weren't sleeping! Oh well, there's always something to feel guilty about :(
To be in our kids' heads even for a day - I think it would be a blessing and a curse, especially if there still wasn't anything more we could do for them after.
Walking with them
@Maura: You're absolutely right my friend. I have friends who have had to walk with their kids through unimaginable pain, all the while, praying that they could take it on themselves. My walk doesn't begin to compare. We all have those moments, though, like you said, when we wish we could take the walk FOR them.
@BD: As my mom says below, we're hoping that Willow has that kind of connection with Billy. She adores him so much, and as I was saying to someone recently, she's the best therapist that money can't buy. I'm waiting for her to get to the point that she can explain the kangaroo thing to me.
@Jen: I feel your pain. It would be great if we could feel theirs. It seems the least we moms of kids on the spectrum should be able to expect is a little bit of telepathy.
@Gina: Thank you for your words. That means a lot to me.
@Nan: Billy's lucky to have you. I've met so many parents of kids on the spectrum who are doing it alone, and I'm very lucky too to have a mom who has been walking with us all the way.
@Domestic Goddess: Tru dat.
@Jen: You bring up a very good point. I would hope that I would be able to relate more, but if there was nothing I could do to help, that would be a curse indeed.
I really appreciate all the support and feedback. It's been a long week ... but I know we all have those :-)
FYI, Today was the 14th day since I emailed Disney about our New Year's Eve troubles at Hollywood Studios. I received the automatic response saying that someone would contact me within 14 days, but as yet, I've heard nothing else. Watch this space ...
So beautifully written. Very touching. I hope you feel better soon. That funk has gone around town at least 17 times already. It needs to go visit a new town. Loved the part about Willow sneezing. Caleb has learned to use his cough as a weapon of mass destruction. He actually premeditates a coughing attack aimed right at your face. It's horrible. I wonder if that's something ABA could address if we ever get our referrals out... =)
The Guilt
You are so right about the guilt. I hate it. At least when we are ill first we have an idea. I hate second guessing. I am from the UK and my son Ben is 7 and a half years old and severely Autistic. He is non verbal, has challenging behaviour, is aggressive, self harmer etc etc. Over Christmas he was ill and he was really poorly for 2 weeks. I medicated him (we can only use suppositories) and I chose the middle strength. Later my Husband and Daughter were as ill and all they kept saying was how bad their heads were and there aching bodies, that they never felt as ill in their lives. They were diagnosed with flu and I hated myself. I get the same thing with new shoes. Bleeding blisters that I didn't know were happening as there was no wimpering or limping and worst of all he almost choked on Monday ....
Love this blog (I found you on Twitter) and have been reading it as have been up since 3am with Ben.
Karen xxx
Sending You Hugs...
I hope you and your wee ones are feeling better soon...this piece moved me to tears, Amanda...
Wendy
Total 12 comments
... 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!"
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?
Sounds like The Count from sesame street and a really weird dream. 5 Charlie Browns, ha ha ha!
My thoughts are...
that she is a genius! Seriously have no idea where she was going with that last grouping but, I still think it's pretty amazing that she is doing this sort of thing at 22 months. Loved reading about your Disney trip and I'm fairly certain if that had been me dealing with those teenagers I would be texting this comment from a jail cell in Orlando! ;)
Things on your TV set for $500!
Don't kid yourself...she's clearly a genius.
Nope, she is a genius!
Pretty sure that is genius. Garrett just turned 2 and the first thing I get each morning is "EAT!!" Willow is destined to be a literary genius, Garrett is going to be a world champion food eater:)
lol what a cutie, you don't have 5 books on cars and 8 Charlie Brown books do you?
Five Car Charlie Brown
Unfortunately, I know precisely what she means. However, thanks to the gag order instituted at the request of Lucy's and Peppermint Patty's attorney, all I can say is that the unicorn in question will never be the same.
Sounds like a genius to me!
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!
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.
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!
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".
Things that rhyme?
(and yes, I know Five Car, Charlie Brown and Unicorn don't really rhyme... But she *is* only two years old)
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"...
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.
Total 14 comments
Snippets 'N Stuff
Wednesday July 13 2011 02:09:19 pm
DeeAnn Lancaster
I have never heard of an ulcer on the tongue. Ouch!
I hope Billy feels better soon and YOU get some sleep.
Mama Said, Mama Said
Wednesday July 13 2011 07:32:30 pm
Ashley
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! =)
Sorry to Hear that Billy Is Sick
Thursday July 14 2011 12:24:25 am
Cheryl D.
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!
Tuesday October 11 2011 09:50:28 pm
pellet plant
Do not worry.Tomorrow will be better?
Mr
Tuesday January 10 2012 02:05:33 am
how to whiten teeth
I hope Billy feels better soon and YOU get some sleep.
Total 5 comments