LIFE IS A SPECTRUM

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.

thewayIfeel

INT. BILLY'S BEDROOM – MORNING.

It's one of my favorite times of day. The room is dark, and Billy's still warm and snuggly from sleep.

Me: Time to wake up, big guy. Time to get ready for camp.

He rubs the sleep out of his eyes and whispers to me.

Billy: Mama, how do you feel?

Me: I feel like I love you.

Billy smiles.

Billy: That makes me feel thankful.

My heart bursts and I hug him deeply.

Me: I'm thankful too. I'm thankful for you.

Billy: I am not frustrated.

Me: That's good.

Billy: I am not very shy.

Me: Truer words have never been spoken.

##

Proud

The illustration for "Proud."

Billy and Willow love the book, The Way I Feel, written and illustrated by Janan Cain. Both kids have started using words to identify their feelings, a major goal for us this year. A book can't teach these ideas all by itself, but as a visual reinforcement of conversations about these vague concepts of emotions, I think it can be very helpful, particularly to preschoolers and/or those kids with developmental delays. The illustrations in The Way I Feel are engaging and colorful, and the little rhymes do a great job of capturing the essence of feelings such as “jealous,” “shy,” “silly,” “frustrated” or “excited.” I recommend it, if your kids are working on these concepts.

FYI, I bought this book with my own hard-earned cash, and all opinions contained herein are my own, un-sponsored objective perspective. However, had anyone offered to pay me for it, I would have happily taken their money.

Sigh.

Reader Comments

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I think I'll go look for this book as this is the 3rd time it's title has come up this week. We are still working on identifying feelings and the subtle gradations of...
I hope you are well Amanda. It was good to see your name on a list somewhere today so I popped on by to say hello!

Teacher gave it to me

My son's teacher gave us this book as well and he loved it till it fell apart. I think it was very useful in teaching him about feelings, which we are still working on.

Snippets 'N Stuff

Good to know. I'll pass this information on to the teachers I work with.

Yeah, I'd happily take money too!

Too bad nobody is offering!

LOL

Very sweet!

Total 5 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

jeopardy

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.

Reader Comments

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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.

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.

Total 15 comments

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