LIFE IS A SPECTRUM

As it turns out, Billy has the Hand-Foot-Mouth virus. Sound familiar? Then you, gentle reader, must have been here LAST YEAR when we had the EXACT SAME THING. Yes, the only thing that has changed from the post I wrote about this plague, since I wrote it last summer, is that Willow can now say the word "cuddle."

So without further ado, I give you a rerun of last year ...

Hand-Foot-Mouth, Baron Munchausen and the Robot Who Saved the Day

06/22/2010 08:34 pm

germsarenotforsharing_medium

We're still sick. And I say "we," because when one of us is sick, we all suffer. Our family is a strategically balanced machine, and when one cog isn't functioning, the whole works grinds to a halt.

I was reticent to share our latest round of illness for fear that people would start thinking I had that Baron Munchausen disease or whatever its called. You know, that psycho disease that you see on episodes of Medium or Law and Order or all those Lifetime movies where the moms keep making their kids sick so that they can take them to the hospital for ... some reason. Maybe they like old magazines or mechanical beds.

Then I realized that anyone who'd laid eyes on me recently would be well aware that I wasn't enjoying myself in the slightest and considering I haven't washed my hair or slept in a week, I'm clearly avoiding drawing attention to myself.

So yep, we're still sick. The third virus.

This one is apparently called “Hand-Foot-Mouth Disease.” I seriously thought that was something that happened to cattle. So after a month of battling respiratory flu and stomach flu, my kids have now apparently got a livestock plague.

But no: It turns out there's no relation to “Hoof and Mouth Disease,” the one cows get. So I guess they could still catch that one.

Hand-Foot-Mouth is a highly contagious (but not dangerous) virus that shows up first, usually, as an unexplained fever. Then it's followed by a rash on the – you guessed it – hands, feet and in the mouth. The whole life of the virus can last two or three weeks apparently. It occurs most commonly in children and also is spread most often in the summer months. Most adults have antibodies to fight it off.

The doctor says that it requires physical human-to-human contact, so most of our friends are in luck. Billy isn't big on going around touching people, so it's unlikely that he's rubbed the cow rash on your children.
I'd never heard of Hand-Foot-Mouth before now (though it's apparently pretty common), so I wanted to get the word out about what to look for: strange, unexplained fever, rash appearing on the feet, hands or mouth and a lack of desire for food.

As soon as we're past this round of illness, I'm going to see a local nutritionist to see if there's anything we can do to boost Billy's immunity. Maybe I'm just paranoid and he's ill no more often than other kids who start school, but it seems as though we've spent the past year doing little more than wiping noses and butts and finding new ways to hide Children's Tylenol in beverages.

We've gone through so much kids' flu meds in the past year that we're thinking of hosting tastings. We can tell you all about the best pairings: Generic ibuprofen and V-8 Fusion, for instance, has a very nice finish. But you don't wanna chase a shot of acetaminophen with rice milk. Recipe for disaster. Children's amoxycillin, however, dissolves nicely in milk.

Anyone have any ideas about boosting immunity? Both kids get a daily multi-vitamin. Our house is not over-run with vermin, and it stays reasonably disinfected, thanks to our long-suffering cleaner.

I've heard something about probiotics helping with immunity, but I have no idea what that is. In fact, when I first heard the term, I thought they were talking about robots.

I could use a robot. Particularly one who could be trained to mix up a V-8/ibuprofen cocktail at 4 a.m. so that I could stay asleep. It would be awesome if it were one of those Tranformers that could also turn into a Hummer and drive us around town and fight crime and stuff.

Sigh. But a robot probably wouldn't be very good at “cuckles” (Willow's word for “cuddles”), and I doubt the Probot5000 would know what to make of Billy's midnight recitation of “It's the Great Pumpkin, Charlie Brown.”

So until the technology improves, they're stuck with me and Dave.

Reader Comments

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I'll be thinking of you

I hope he feels better really really really soon. I'll be thinking of you guys!!

I hope Billy is feeling better by now, Amanda!

Hugs,
Wendy

Oh No

Oh no !!
poor baby
I seriously think once they start getting sick and the immunity is down - they just keep getting sick :-(
That being said I really think both Omega 3 ( coromega is a delicious brand ) and probiotics are a great idea

Oh, man!

Ugh, hope he feels better really really really soon. I'll be thinking of you guys!!

Snippets 'N Stuff

I do think I've heard of this virus before but had forgotten about it. I'm sorry. I sucks when kids are sick, but the good news...the older they get, the less they'll be sick. (I speak from experience as a mother of 4 adult kids.) Their little immune systems will become stronger with time.

Oh, my. I gotta admit, when you mention the mouth ulcer to me yesterday, I thought that was a possibility. This is terrible! I guess this means no more camp??

Total 6 comments

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

mandi-invite

Where ELSE were the neighborhood pigeons going to nest??

1. I started a new WONDERFUL job. And thank goodness I work for my sister, because no one else would have put up with my absenteeism this month. Read on ...

2. I had respiratory flu -- twice. The kids had it once, as did Dave. That sort of counts as me having it five times.

3. I had stomach flu. No one else did.

4. Then I woke up and tried to wash my face with Vick's Vapor Rub.

5. Billy's IEP meeting was awesome. (More on that later.)

6. School ended. Summer started. Which brings us to ...

7. I registered Billy for all-day ABA Camp ... they don't call it “Camp Escape” for nothin'. Come on, Monday!

8. My dad went in the hospital (he's fine now).

9. Our van broke down (it's not).

10. Willow got into at least a dozen fights ... with boys.

11. Billy was named "Terrific Kid" (the good behavior award) at Buck Lake Elementary! And no, Dave, it was not because he was out of school sick the week before ...

12. I turned 40 and Dave and I sang a bunch of 80s songs at my party. (For video of this Awsuuuuuum event, click here.)

This is just my lazy way of making excuses for not blogging very much lately. I'm starting to get act together again, so I won't be such a stranger any more, I promise. But the greatest thing about taking a little hiatus is that now I get to go catch up on all YOUR blogs! Thanks for hanging in there with me ...

Reader Comments

Snippets 'N Stuff

Vick's Vapor Rub? Good grief. You must've been delirious!

Ack! Sorry to hear about the bad stuff, congratulations on the good!

Happy, happy Birthday, Amanda! May this be your best decade yet! Congrats to Billy on his award!

Word Nerd

Thanks! I'm the new Communications Director for Pea Green Solutions. Working from home this week, though, because Billy has a week off between end of school and start of camp.

Congrats

So...what kind of work are you doing for your sister?

Congrats!

Total 5 comments

Billy has been walking around this week, reciting the same line from “It's the Great Pumpkin, Charlie Brown” over and over.

BillyBBall_Small

It's the scene where Lucy tries to get Charlie Brown, once again, to kick the football she's holding. She promises him that she means it this time, that she won't pull the ball away at the last minute. In fact, she even has a contract to that effect, which she shows him.

Of course, at the last minute, she pulls the ball away and Charlie Brown goes flying. “Curious thing about this document,” Lucy says. “It was never notarized.” That's the line that, for some reason, Billy can't get out of his head.

This got me thinking about a couple of things. First of all, the kids in Charlie Brown cartoons are really mean and terrible role models.

Secondly, I thought, OK, Bucko, if you're interested in contracts, let's make one for the summer. We have nearly three months at home ahead of us, me and you and Willow, and we need to establish some ground rules. So here goes ...

My SUMMER CONTRACT WITH BILLY

The house rule “Please don't poke Mama in the eyes” still stands. But let's agree not to share it repeatedly with guests or people at church. I'll take my chances with them.

I promise to keep your baby sister away from your train table if you promise not to sit on her. For long.

If you will nap for two hours every afternoon, I will buy you a car.

If a thunderstorm scares you, you can crawl into my bed with me and we'll watch cartoons the rest of the day.

If you force me to watch “The Great Pumpkin” more than five times in a row, I am entitled to throw the television out the window. Upstairs.

In the event that it rains three consecutive days in a row and you are unable to go outside, I reserve the right to call in the babysitter, lock the door of the playroom from the outside and drink heavily in my bedroom. You may paint anything within arm's length, including the aforementioned babysitter, until the sun comes out.

I promise not to loudly ask, “Have you done a poo-poo?” in public any more – after all, you'll be four next month – if you promise not to loudly proclaim “Chugga-chugga POOOOO-POOOOO!” in the library. (For supporting documentation, refer to the book “The Potty Train.”)

On the day you poop in the potty, I will sign the house over to you.

If you stumble and fall, I will be there to pick you up every single time, kiss it better, and immdiately apply a “Bang-aid” if required. In return, you promise not to seal your sister's eyes shut with Bang-aids.

Contractsign

At 5:30 each and every weekday, I transfer power of attorney over to your father. Any and all requests for juice, fixing of broken toys or watching of the “Great Pumpkin” must go through him until such time as I emerge from a hot bath with my game face on again.

I will throw you the birthday party of your dreams this year and every year ... if you promise not to grow up too fast.

If you will hold my hand this summer and put up with me, I'll hold yours and find joy in each and every day we share together.

Please sign at the left if you agree.

Reader Comments

Love the contract

Contract is too cute!

I think this is a wonderful contract!
Did he stick to it? ;)

Isn't it funny how the cartoons and movies we watched as kids seem so innocent in our memories... until we watch them again as adults and realize how bratty all the kid characters actually are?! I noticed the same thing about Dorothy (from The Wizard of Oz) a few months ago when I finally got around to watching it again. That little girl needed a stern talking to and a time out!

Total 2 comments

If you look around our house these days, it looks more like we're digging in for the nuclear winter than preparing for summer vacation. But getting ready for a holiday period with an autistic child, a period with schedule and scenery changes galore, is a bit like going to war. The options include Extended Year Services through the public schools, a new preschool, or developing a summer program of our own to implement at home.

SMALL_Billy_Mudpile4

I don't mean to suggest that we're going to war with our child -- or even with autism, with which we've made a comfortable truce. We're battling “regression,” a term with which every parent of a special needs student becomes familiar eventually.

When the school system – most likely your IEP team – makes a decision about whether or not your child should have Extended Year Services (EYS), their concerns about regression play a big role in that decision. “Regression” refers simply to losing skills your child has attained throughout the year. (I wrote an article about EYS for the Special Needs Examiner, which you can read if you're interested in summer services, but for a variety of reasons, we decided that Billy was better off at home over the summer.)

Billy could happily spend the summer in the middle of a pile of mud with us occasionally throwing fish sticks in his direction. But we want to make sure that the stress of the summer schedule changes doesn't cause him to lose the ground he's gained in academics and life skills this year. Dave and I sat down and talked long into one night about our hopes for the summer, and eventually boiled down our goals to three simple ones:

Potty Training: If you have any suggestions at all in this area, I will pay you for them.

Sleeping: We want to get Billy out of his elaborate enclosed crib-style bed and into a “big boy bed.” Again, suggestions? How do you keep them in the bed if they don't want to stay there? Currently, he goes to bed each night at 7:30 p.m. but stays awake sometimes for an hour reciting books and TV shows and singing the soundtracks of every Charlie Brown holiday special from “Happy New Year, Charlie Brown” to “A Charlie Brown Christmas.” If he weren't in an enclosed bed, he would probably run around his room all night long. I guess we'll find out soon enough if that's true ...

Handwriting/Drawing: Billy has made HUGE strides in this area this year. At the beginning of the year, if handed a crayon, all he'd do is peel it or perhaps chew on it. Now he can write his name, copy some letters and shapes, and he really enjoys drawing.

We wanted to build on that interest and success, so we invested in a couple of different products. The first, “TV Teacher/Alphabet Beats,” is a DVD-based handwriting program recommended by his private occupational therapist. I wrote a detailed review of it here. Billy loves the little rhymes and songs, and I credit “Ms. Marnie” with teaching him to draw a spider.

When we attended his end-of-year conference at school, though, we were introduced to the program he's been using throughout the past year. A really impressive mult-sensory program, “Handwriting Without Tears” addresses what I'm told is one of the biggest problems with special needs kids and handwriting: They get frustrated because holding a writing utensil is difficult for them, so they can develop an aversion to handwriting and just refuse to do it.

“Handwriting Without Tears” doesn't even require them to touch a writing implement until they're ready. Instead, they learn to form shapes and letters first with wooden pieces and then Playdough. Then they move on to magnetic letters on a magnetic erase board before eventually moving up to a slate and tiny pieces of chalk. There's an easy-to-follow teacher's (or parent's) guide and a workbook with fun pre-writing exercises in it.

Despite all the pieces and parts, “Handwriting Without Tears” is actually less expensive than the “TV Teacher” program. For a complete set, both are going to run in the $100 range. However, you don't have to buy every piece at once.

We're going to use a hybrid of the two over the summer. Billy likes to watch the DVDs and draw along with Ms. Marnie, so we'll let him have that as a reward. And for 5-10 minutes each morning, we'll work with the tools in the “Handwriting Without Tears” program.

Who knows? Maybe by the end of the summer, maybe Billy will be writing this blog for me. Wish us luck! (And I'm serious about those potty training ideas – PLEASE post them here!)

Reader Comments

Potty Training

I have no experience potty training boys. This worked for my girls. During the warmer months, let them run around with a t-shirt on. No underwear, diapers, or pullups. Prepare to clean up a lot of messes. Have your choice of potty readily available. We used a regular toilet with a seat over the top to keep them from falling in. We used a reward system that consisted of stickers, toys from the dollar store, and lots of hugs and praise. Through trial and error, the girls learned to listen to their bodies. My younger daughter (who has the delays), wasn't potty trained until 3 and 1/2. I really don't think that she had the muscle control, nor the awareness until then. I hope this helps!

Sleeping

I had to sit outside my son's door for a week to get him to stay in his bed but after that he pretty much started going to bed and staying there. We still have problems sometimes, but not as bad as that first week. It's going to get worse before it gets better but stick with it and stick with his routine and he'll get it.

Potty Training & Big bed

Amanda.. what have you tried so far with potty training? As for the big bed.. we got him one over a year ago, and at first it took him a while to stay in the bed, and "get" that it was time to sleep.. maybe 2-3 weeks.. but after that, he just got it, and stayed there and went to sleep.

From Amanda Broadfoot

Hi everyone! Thanks SO much for the input!

Leah: I think Billy may have lacked the muscle control until recently too. But he has just started sleeping (mostly) through the night without wetting his Pullup, so I think we're finally ready. Now that school's letting out and I'm going to have him at home, I'm going to give that technique of letting him go naked a try.

Sarah: I'll be honest: we haven't tried anything with real consistency. He does have a picture schedule for the potty and understands -- and can complete -- every step of the process by himself. The problem has been getting him to WANT to. The second I bring up going to the potty, he hits the floor screaming. Once we're there, he goes through each step (except poop - we haven't had any poop on the potty yet) by himself.

But I think we've come to understand over the last few weeks that he needs to feel more control over when he goes. A couple of times, we've left the door open to the bathroom and let him wear "big boy pants" and he actually went to the potty on his own! Also, at school he goes at VERY predictable times. It's on a picture schedule and he has a timer and he knows exactly when he's going. AND he doesn't give them a moment's trouble about it.

His speech therapist at school suggested a social story explaining that usually we go to potty on a schedule but "sometimes we have accidents" and that's when we have to go to the potty unexpectedly. And then have a picture of the potties that we sometimes have to use: at therapy, at a fast-food restaurant, etc. I'm going to create this social story this week, and I'll let you know how it goes.

Thanks again everyone for chiming in!

Potty training video?

Have you tried getting a potty training video for him? As much as he loves his shows, maybe a video about potty training would be helpful???

Potty training video

His wonderful aunt sent him an awesome Elmo potty training video, which he and Willow are now both obsessed with. I'm hoping this translates to impending potty success. Watch this space ...

Total 6 comments

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