A follow-up and a request

Several months ago, I asked for your input on social pragmatics for a piece I was writing.  You were incredibly helpful and a couple of you asked me to post the piece once it was finished.  It's out now, in the Summer, 2013 edition of Thrive magazine.  You can read it here.  (And if you're interested, I have a humor column in the same issue - right here.)

And now I'm back to ask for your input on another piece.  In this one, I'd like to focus on the challenges of finding childcare for a child with special needs (and I'd like to point out that I'm looking at "special needs" more globally, without a specific focus on autism, so if you have a friend who is a special needs parent and you can point them in my direction, I'd appreciate it!)  I'm thinking about both ongoing care (daycare for toddlers and preschoolers, afterschool care for older kids) as well as occasional care - since we all know that popping out for a quick dinner and a movie can take a month's planning when you have a child with special needs.

I'm seeking advice, lessons learned, success stories, and not-so-success stories.  Please share what you have - and, if you can, jump over to the Facebook page, where I'll be posting more pointed questions on the topic.  (And, again, if you know parents with children who have needs other than autism, I'd love to hear from them as well!)

Thanks in advance for your help.  You are the best resource I know.

1, 2, 3, pedwar

In which Bud tells it like it is

We were packed up and headed out for the weekend - one of those crazily-scheduled weekends that always compels me to over-pack.  As I struggled out the door toward the car, looking like a pack mule with my arms full and bags hanging from both shoulders, I looked at Bud walking happily ahead of me, his laptop bag on his shoulder and his iPad in hand.

"Hey," I called out to him. "Why is it that I'm carrying everything and you're carrying nothing?"

Bud spun around and made his way back to me.  "I don't know," he said.

"How exactly did this happen?" I joked.

He turned his face to mine and moved closer until our noses were almost touching, then raised his eyebrows and flashed me his trademark closed-mouth grin.

"Oh," I laughed.  "Is it because you're so cute?"

"No," he answered.  "It's just because I'm so... "

He paused, searching for the right word until he found it.

"Smart."

Under pressure

I’m looking for feedback.

For years, I've been thinking that I recognize a connection between the weather and Bud’s ability (or inability) to maintain emotional regulation.  Specifically, it seems as though Bud struggles as a low pressure weather system is approaching our area.    When the forecast calls for a major storm a day or two in the future, Bud is volatile – sometimes emotional and easily overwhelmed, sometimes oppositional and aggressive, and sometimes all of those things at the same time.

On the other hand, I’m aware that I live in a region of the country characterized by volatile weather systems.  We have a lot of advancing storm systems, so I sometimes wonder if I’m grasping at straws and seeing correlations where none exist when I attribute his behavior to the weather.  Maybe we are so rarely more than a few days away from a storm that there is always a low pressure system I can point to when challenging behavior erupts.

So, reality check me here.  Do you see a connection between the weather and your child’s behavior?  And if so, what do you see?  I’d really like to know.

High, kids!

Bud brought a children's book with him to the doctor's office last week.  As we sat in the waiting room, I glanced over his shoulder to see what had him so engrossed.

And then I did a double take.

And then I took a picture of it.

Because, really.  WHAT???

Autism awareness goes to school

In which Bud's teachers show that they get it:

Me:  Bud, you did really well on your report card.

Bud:  I did?

Me:  Yes.  And look at all the great comments that your teachers wrote:  'Another great quarter, Bud! You are a very hard worker!'; 'Fantastic job this semester'; 'Bud does his best.'; "Bud continues to be a joy to teach. He is expressive, creative, and willing. Keep up the good work, Bud!'; "Bud is always a delight to have in class."

Bud:  Wow.

Me:  You did a great job at school.

Bud:  It was my pleasure.

Autism awareness goes to the office

In which Jerry uses a figure of speech:

Bud's sitter has dropped him off at my office.  We have packed our things and are heading out.  My colleague Jerry meets us at the door.

"Hey, Bud," Jerry says.

"Hey, Jerry," Bud replies.

"You going home?"

"Yup.  We're going home."

"What's for dinner tonight?"

"I don't know," says Bud, turning to me. "What's for dinner tonight, Mom?"

"Well," I say, "we have some of that chicken left over."

"Okay!  Chicken!" says Bud.

"You're easy to please," says Jerry.

"Oh, yeah," replies Bud, appreciatively. Then he turns to me and corrects himself. "Okay, chicken, please."

Autism awareness goes to the doctor

In which the nurse gets a quick lesson on literal thinking:

Nurse (taking health history):  Bud, does anyone smoke in your house?

Bud:  Actually, I live in an apartment right now.

Nurse:  Oh, that's okay.

Bud:  Yeah, it's great.

Nurse waits.  Bud returns to his book.

Nurse:  So, Bud, is there any smoking where you live?

Bud:  Well...

Nurse waits.  Bud thinks.

Bud:  Well...

Nurse waits some more.  Bud thinks some more.

Bud:  Well, one time someone burned some brownies.

And scene.

Our kind of autism awareness

"So, I put a new light bulb in the lamp in the window, Bud.  You know what color it is?”

“Blue?”

“Yes.  You know why?”

“Because it’s Autism Speaks Day?”

“Kind of.  It’s Autism Awareness Month.”

“Today is April?”

“Yes.”

“Oh.”

“So, what will the blue light tell people?”

“About autism.”

“And what do you want people to know about autism?”

“I have a brain.”

“You do.  And it works in a special way because you have autism.  So, what things are hard for your brain?”

“When my brain gets stuck.”

“That is hard.”

“Yeah.”

“And what things are easy for your brain?”

“Um.  I don’t know.”

“What are you good at?”

“I’m good at playing the Penguin Polka on the piano.”

“That’s true.  You’re very good at that.”

“And I’m good at hosting a game show.”

“That’s true, too.”

“A reality game show where everyone’s a winner… except five of you.”

“That’s Fetch With Ruff Ruffman.”

“Yeah.”

“You are good at that.”

“Yeah.”

“What else do you want people to know when they see the blue light?  What do you want them to do?”

“Um.  I don’t know.”

“Well, what can people do to make things easier for you?”

“They can be kind.”

“That’s a good one.  It’s really good to be kind.”

“Yeah.”

“Anything else?”

“No.”

“Just be kind?”

“Just be kind.”

What's your story?

I'm trying to do a little background research to figure out how much of my experience is shared by other parents of kids on the spectrum.  So, if you're a parent of a child who has difficulty with pragamatic language - using language with comfort and fluidity in social situations - and you're willing to share your story (and possibly be quoted elsewhere), can you leave a comment and tell me about any of the following:

Social situations you've attempted with your child and how they've played out;

Social situations you've avoided because the challenge feels too great;

Social successes your child has had;

Things you do with your child to prepare him/her for social situations.

Thanks in advance, friends.  And for those who have asked - yes, once this article is out, I will definitely post a link.  In the meantime, maybe we'll all find some wisdom we can use (or at least the reassurance of a few good "me too"s) in the comment section.