Arlene is on the SCENE

Posts Tagged ‘school

…the day is finally here. Meet Bill and Pete!

That’s right, you can finally read my very first book, Bill and Pete Go Into Space. I have to apologize for my handwriting and how the words are a bit faded.  Those of you who have heard me speak know that I wrote this story BillPete.cover02262013_00000long, long ago, in the ancient times before computers, Ipads, and Microsoft Word. Copyright date is 1978, and I was just a mere nine years old, about the same age as many of the students I meet.

When I posted it on the site this morning, I re-read it. Yikes! It doesn’t sound very good to me now. Kind of a space-age version of David and Goliath, with a little hint of my favorite show as a kid, PuffnStuff, although way less creative. And wow, there are a lot of mistakes! Spelling, grammar, punctuation. Guess I had more learning to do.

So I’m a little embarrassed to put it up here, but then again, maybe that’s a good thing. One of my main points when I talk to students is that when the environment around us is supportive, when we are all practicing our empathy, I can feel safe in sharing my true self, in embracing who I am. And I love writing. Sometimes I’m not that great at it. So?

You can click here to read “Bill and Pete Go Into Space.” Like I said, I personally don’t think it’s amazing. What it could probably use are some PICTURES! If you want to send me your drawings, I would love to see them. If you say it’s okay, I’ll post them online. You can email them to me at carol at hnf-cure.org, or click here to email me directly, and I can send you an address where you could mail me a copy of your picture.

Go Bill and Pete! 🙂

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Hey, it’s Arlene again.  Yes, I’ve been gone all summer.  I mean, not really GONE, but you know, you and I haven’t really talked in a while!  Doesn’t it always seem to go that way?  We say let’s stay in touch over the summer, but then we go to camp, Mom and Dad drag us off to see cousins and family, we watch a whole lot of TV, whatever.

But I did read some great books too!  I read the new Diary of a Wimpy Kid, and to get a little more serious, I read Esperanza Rising.  That was good.  I also read the Guiness Book of World Records because one day I will set one.  Haven’t decided which one yet.  I know it’s NOT going to be longest fingernails, because I tend to bite them.

But now it’s time to go back to school.  Part of me is really excited.  The other part is…I don’t know…nervous.  Just like last year.  This year my braces aren’t new, but still, it’s stressful, you know?  I read this thing online that made me laugh, but it was also very true.  Here, you can read it yourself, but come back to this page so we can finish talking.

So this girl is a little older than me, but she is talking about going to school with a disability, an “upper limb deficiency” to be exact.  I had to ask Mom what that meant.  As far as we could tell, sounds like this girl has only one arm, or at least only one hand.  Now that seems pretty intense to me.

But then again, I have Charcot-Marie-Tooth, and that sounds pretty intense to most other people too.

But what made me laugh is that when kids asked this girl what happened to her arm, she said it got flushed down the toilet!  Crazy!

People do ask funny questions when you’ve got a disability, and it helps to have a few of those funny answers handy when you need them.  But this girl talked about more serious stuff that is really true, things that make me a little nervous walking back into school this week.

Things like, the staring.  And I’ll probably get some funny questions too.  I’ll get new teachers who don’t know me and try to do everything for me, instead of letting me choose when I need help and when I don’t.  And I’ll get friends who get to know me so well that they forget about my disability, which is great, but then they run down the stairs ahead of me, never stopping to wait.

It’s all a big swampy mess of things and feelings that are harder to push through than say…hanging around the house this summer.  I’ll make it though.  No doubt.  In fact, I’m sure I’ll have a blast.  Just gotta get psyched up for it.

Post a comment, tell me about what went on for you when you started school this year.  I’d love to hear about it!

We see differences...

A new study in the journal Pediatrics delivers what may be surprising observations and conclusions.  The first thing that made me pause was that in the sample, 33% of the students surveyed had some form of special health care need.  For the past year, I’ve been presenting to students at elementary schools about disability and our attitudes toward it, using our book Arlene On the Scene as a launching point.  And I always jump right to it in the opening of my presentation: we do have attitudes toward disability.  Don’t try to deny it.  In fact, we have reactions and attitudes toward most differences, including disability.

The idea that in a group of students nearly one third could have a special health care need, which then generates these attitudes and reactions in those around them–well it’s no wonder that all this affects school performance.

And this is what researchers found out.  Having a special health care need, such as Charcot-Marie-Tooth disease or any other health issue, negatively impacts school performance.  That means lower grades, more absences, and less motivation to do well.  How much of that is the health care limitation itself, and how much is the lack of support from financially strapped school systems?  Or how much of that is because of our own attitudes toward disability?

The study also found that students with special health care needs were more often victims of bullying.  This surprised me, what with the War on Bullying launched recently, you’d think the teasing of kids with special needs would have been addressed.  But then again, maybe it isn’t so surprising.  An understanding of what it means to live in this world with a disability, an opening of the mind to the differences among us, the adjustment of attitudes and assumptions about disability–these are tough topics that just aren’t undertaken by our schools, given the hyperfocus on tests and stats.

But increasing awareness of disability, and of diseases like Charcot-Marie-Tooth, must be undertaken, if not by our schools then by us.  This new study is further proof of this.  We have a responsibility to our children to foster an understanding of diseases like Charcot-Marie-Tooth and the special health care needs that result.  Their future success depends on it.

Well, we got off to a great start on our week-long visit to schools in Rhode Island, spreading Arlene’s message as far and wide as possible.  We kicked the week off at the school of the girl who inspired the book, Grace Caldarone.  A big shout-out to all our new friends at Monsignor Clarke School!

Next we visited West Kingston Elementary–we loved seeing you all!  Chariho Middle School–all 500 of you–glad we could talk, even if it was 8:30 in the morning for some of you!  And to our friends at Hope Valley, thanks for all your great comments about the book.  We loved that you loved it!

And thanks to Wakefield Books for hosting a great book-signing.  We talked to a lot of our new friends that we met the past two days and continued to spread the word about the need to raise awareness of CMT.   If you missed us today, we left behind signed copies at the store, and they are the rare ones with BOTH authors’ signatures.  We’re not often in the same place, so grab one of those while they last!

We’re off to Warwick tomorrow, Providence Thursday, and Coventry Friday.  And we’ll be at Symposium Books in East Greenwich on Friday from 3:30 to 5:00 if you’re in the area!


Free Teacher's Guide! REVISED for Common Core!

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Arlene On the Scene is proudly sponsored by the Hereditary Neuropathy Foundation.

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